Hello Everyone!
Brian and I would like to wish everyone a Merry Christmas! We have learned a lot over the last 6 years of my health journey, but the biggest lessons learned would be to cherish every moment you have with your friends and family and to be thankful for every blessing no matter what type of package it arrives in. No matter how many times, I hear the Christmas story, I am still in awe that my loving heavenly Father would humble himself to come down to earth as a baby. I can imagine the overwhelming joy that Mary and Joseph felt as they held their precious son for the first time that night. Little did they know that this gift of joy would later make the greatest sacrifice for each one of us. It is our prayer that you experience God's gift in a new way this season. Seek God, and you won't be disappointed!
I found the song by Mercy Me called "Joseph's Lullaby". It's been out awhile, but I just heard it on the radio this week. It's such a sweet reminder of God's love and constant provision. He cares about each and every little detail in our lives. Remember, to listen to the song you will need to push pause on my music player at the bottom of my blog.
This isn't going to be too long because it's 5am in the morning, and I need to work in about 10 minutes. It's early, but I praise God for the opportunity to teach virtually. :) In my last blog post, I requested prayer for Brian and I as we were going to be making some big decisions about treatment. We are excited to say that God definitely made it clear the path we should take for the time being.
We have decided to stop all antibiotic therapy at this point in time. We are going to be doing acupuncture more often. For me, acupuncture seems to be helping the most. I can literally feel it working during my appointment. Afterwards, we see nothing but positive changes. This was a difficult decision to make after 2 1/2 years of therapy and stopping before I have reached a state of wellness. However, the drugs were doing more harm than good, and we felt God leading us in a different direction which was affirmed by many Godly individuals.
Two Saturdays ago, we went to our church's healing prayer rooms and sought prayer for my health. It was a wonderful experience, but we didn't notice a miraculous healing. That was okay because we are trusting God that he will heal me in His time. Over the last two weeks, God has guided and directed us down the path we have chosen. We feel at peace with our decision, and it seems like God is really working. I have been off antibiotics for about 3 weeks now, and I am still doing good. This was the first mile stone that we had to get past. The second one is the six-week mark. That is when I crashed the last time. That should be about the time we are traveling to San Francisco to see my Lyme doctor. So, we are hoping and praying we can walk into that appointment with an amazing testimony of what the Lord has done in my body. My doctor is not a believer, so it would be such an incredible opportunity for him to see what kind of God we serve!
In some ways, it's been kind of nice to let go and just let God work. However, in other ways, it's been a battle dealing with the unknowns of what will happen if I don't take the medication. I am learning that it's a minute by minute surrender. Just about the time I start to fear, I remember God's truths and His promises drown out the uncertainty. It's been challenging, but I have to say I am happier than I have been in a long time. It has taken me a long time to learn not to base my joy and happiness on my circumstances, but now that I have learned that lesson, I wouldn't want it to be any other way.
So, we would just ask that you would really be praying for us over the next few weeks. Please pray specifically that I can stay off antibiotics and other meds, and that I will keep improving. Of course, we would gladly welcome a miraculous healing too! :) We are believing God that He can help us have victory over this disease! We treasure all of the support we have received. Please know you are such a blessing to us. Merry Christmas friends!
Friday, December 23, 2011
Wednesday, December 14, 2011
Christmas is getting closer... :)
Hello folks! I didn't realize it's been so long since I updated this blog. We have experienced kind of a bumpy ride lately, so time seems to even fly by faster than it normally does. Christmas is coming soon! Are you so excited??!! Brian and I finished all of our Christmas shopping and mailed all of the packages. By the time we paid all the postage, we decided that was yet another reason to move closer to family. :) No, we are not looking at moving anytime soon, but it is a long term goal of ours to get back to the Midwest. We actually miss the snow! :) For now though, God is working on our contentment. Brian has an amazing job and the allergy level is very low in the desert. Plus, my doctor is in CA, and at this point, I am too sick to fly. So, we are in Tucson for the time being. We will miss all of our family and friends this Christmas. So, please know you will be in our thoughts and prayers! We pray that God would bless each one of you this holiday season.
We have had a big praise! We found a local amazing Physician Assistant who is willing to work with my Lyme doctor. She is very attentive, brilliant and believes in Chronic Lyme. We are SO thankful! She didn't freak out or question our judgement when we told her about my health journey. God is SO good! We are praising him for this blessing as we really needed someone locally that we could trust and rely on for emergencies and other issues not directly related to Lyme. We have been praying for someone like this for so long. Yay God! :)
Okay, now onto our update. Let's see...I am actually currently off antibiotics. I have been off for two weeks. I am doing pretty good Lyme infection-wise. We haven't noticed any of those types of symptoms pop up. The reason why we had to get off antibiotics is that my stomach and intestines just couldn't take it anymore. I was having constant pain in those two areas, and struggling a lot with Candida. So, we took a break. During this break, Brian and I have talked a lot about where we want to go from here. It seems that we are at a progress stand-still with the antibiotics. We have a new one to try, so that could help us move forward, but we are not sure. At the same time, the drugs seem to be reaping havoc on my system. My kidneys and liver are starting to show signs of not being happy, and obviously, we now have a big digestive tract issue. My Lyme doctor has advised us to only stay off antibiotics about a couple more days just long enough to get some supplements in me to help heal my digestive tract (which I will probably be allergic to), and to start a new antifungal (we think the last one really set my stomach issues off). However, Brian and I are really seeking the Lord about what to do.
Awhile back, I was reading 2 Chronicles 16 because it was a part of my daily devotional. At this time, Brian and I were just starting to talk about what we wanted to do for treatment. As I was reading, verse 12 seemed to pop out at me. It was talking about a king who was very ill with a serious disease. It said "Yet even with the severity of his disease, he did not seek the Lord’s help but turned only to his physicians." Boy did that give me a "spiritual slap". Over the years, I have asked for prayer for my healing, but I can't say I have honestly prayed myself. I pray for other people and believe God for their healing, but personally, I never sought God in prayer for my own healing. Sad isn't it? I guess I just felts selfish doing so. During these years, I have done what this king did. I have sought a TON of different doctors, done research on the best treatment protocols etc. I never actually just stopped and relied upon my Savior as my only source of help.
As a result, Brian and I have been really seeking God what our next step should be. This past Saturday, we went to the "healing rooms" for prayer at our local church. It was wonderful to be prayed over, and even though we didn't experience a miraculous healing, we aren't going to give up! We believe God has the power to heal, and that He will do it in His time. We are going to be persistent!
So, I guess that is where we are. We could really use your prayer to decide what to do next. We are highly suspicious that my stomach and body just won't tolerate antibiotics anymore. One of my doctors suggested getting a picc to do the IV route (to bypass the digestive tract), but if insurance won't pay for it, that is not an option for us. We just don't have that kind of cash flow. We have some major decisions to make. Our big one is do we just stay off antibiotics until we see signs of me crashing to let my gut heal and to give God a chance to work or do we get back on in a couple of days? We have discussed about just seeing what acupuncture will do to help my body since I usually make so much progress via that treatment method. However, we are concerned that I will crash and we will undo the headway we have made so far. Ugh! So many decisions! :P Please just be praying that God would make everything so clear.
Also, if you could please be praying for my stomach. I am in a lot of pain, and we are not totally sure of the cause. I ended up in the ER last Friday evening, but they weren't sure what the cause was without doing more in-depth outpatient testing. My local PA has suggested we might need to investigate this further with an ultrasound and a GI scope, but we are going to see what happens in the next week or so. Please pray for complete healing in this area.
Well that's it for now! We have an appointment in San Francisco with my Lyme doctor on January 13th, but I will try to update before then. Have a blessed holiday season!
Tuesday, November 22, 2011
Happy Thanksgiving!!! :)
Hello Folks! Happy Thanksgiving! This is my official T-giving post. :) I know, it's been a couple of weeks since my last update, but we have had a couple of crazy weeks. God has really been working on my heart to give thanks for ALL things even the tough stuff. So, I have made a point to note something I am thankful for every day this month. I already did days 1-7, so here is the rest. I will make them short so that I don't create a book, and I can also add an update about my two doctor's appointments. :)
November 8 - I am thankful for God's Word, and how it encourages my soul.
November 9 - I am thankful for today's technology that allows all of us to communicate virtually.
November 10 - The food I can eat is a blessing. I am down to about 15 foods, but I cherish the fact that I can enjoy black bean chips and blueberries. :)
November 11 - I am thankful for the wisdom of my doctors. God has used them in amazing ways.
November 12 - I am thankful for the Lyme community. I have found so much valuable information and they have helped me so much!
November 13 - God helped me get a master's degree! I am so thankful for that opportunity.
November 14 - Even though I can't work in a church ministry, God has still opened doors for me to minister to other people. What a blessing!
November 15 - I am thankful for Arizona. Although we miss our friends and family in Nebraska, we know that this place is the best place for my extreme allergies. I praise God for the low outside allergen count! :)
November 16 - Brian's job has been an incredible blessing. His company is amazing, and they have been so supportive.
November 17 - I am thankful for laughter! Even though times are tough because of my health, our home is filled with laughter.
November 18 - I am so thankful for our marriage. We have been through so much, but God continues to help us keep our marriage strong.
November 19 - Last year, my parents-in-law got me a Kindle. I was having trouble reading books because of the chemicals in the print. This has enabled me to enjoy one of my favorite hobbies.
November 20 - I am thankful for music. It is so uplifting and encouraging. What a gift from the Lord!
November 21 - Passion City Church has been a blessing to us. Even though it's in Atlanta, Pastor Louie Giglio's sermons challenge us to always pursue a strong relationship with our Lord.
November 22 - I am so thankful for my time in college and at Christian Student Fellowship. I can't put into words how much that ministry impacted my life. I met so many incredible people and made incredible memories! I cherish those 3 years!
November 23 - I am thankful for the amazing Godly women God placed in my life before and after I got married. They were incredible mentors and taught me a lot about what it looks like to walk in faith on a daily basis.
November 24 - I am thankful for this blog! It has given me an opportunity to share what God is doing. I hope that we can be a blessing to others as much as they have been a blessing to us!
Well, that's my 24 days of thanksgiving! It's times like these that really put things in perspective. Brian and I have so much to be thankful for, and we praise the Lord for all that He has done in our lives. Now onto the updates....
On November 12th, my husband and I traveled to Califorina to see a new doctor my Lyme doctor had recommended. We really liked her. She understood how my body has been impacted by Lyme and all of the other infections extremely well. She ran a lot of tests, and we found out that I have a lot more infections and viruses in my system than we thought. It was a great appointment, but we walked away more confused than ever. We thought we just had to beat Bartonella, but it looks like we have a lot more to tackle. At this point, we are having to balance the need of treatment with what my body can handle as far as my kidneys/liver go and also making sure not to increase my candida issue.
Today, I had a phone appointment with my doctor's PA. We had so many questions for her especially after meeting with that other doctor. She had a lot of good things to say. Again, I am SO incredibly thankful for this practice! We are up against a big battle and running out of options, but I appreciate how she remains optimistic even with my tricky case. We are going to try Biaxin which is a good medication for me and one I haven't been on in awhile. She said that if we don't want to get a PICC (we are still deciding) to help with my dehydration, then we should look into finding a traveling nurse that can come to my house and insert a peripheral IV once a week during the times that I am struggling with the dehydration issue. It seems to be on a pattern every month, so it's tied to my hormones in some way. Brian and I really don't know of anyone, but we do have a new lead with a local PA that is willing to work with Lyme patients. I have an ppointment with her next week. Please PRAY that she is receptive and willing to work as a team with my Lyme doctors. I am also going to keep taking Rifampin for now.
Another thing she wants us to look into is doing once or twice a week Bicillin injections. We would do the first one in the office in January, and then they would teach Brian to give them. I don't know much about them right now except I have heard they really hurt. I also know they are really expensive, but my doctor's PA said she thinks she can get them approved through our insurance. Brian and I have a lot to talk about. At this point, we are very cautious what we try because of our financial resources and also because it just seems that the right treatment differs for every person when it comes to beating Lyme and all of the infections that come with it. It's a big guessing game as what works for one person doesn't always work for another. We aren't giving up, but we are just cautious with every step we take.
Brian mentioned to me today via text message that we should go and have me prayed for again. I agree! We will let you know when we decide to go do that. Our list of options to get me well is dwindling very quickly. So, we want to make sure we are wise and definitely want to include the Lord in every decision we make. We are still believing God for a miracle!
Well, I would like to wish each one of you a Happy Thanksgiving! May you have a blessed holiday with your family and friends!
Monday, November 7, 2011
Giving Thanks!
Right now, I have Christmas music playing. I know, Thanksgiving hasn't even come yet, but I can't help it. Christmas music just puts me in such a good mood all the time! However, I don't want to skip the holiday Thanksgiving either. I have seen quite a few people write what they are thankful for on Facebook for every day in November. I like this idea, so I will do it on my blog instead. Christmas is my favorite time of the year, but I have a lot to be thankful for! Here is my list so far...
November 1 - I am thankful first and foremost for my loving Savior Jesus Christ. He is my comfort, my sustainer and my source of hope and joy.
November 2 - I am so thankful for my husband. He is such a blessing from the Lord. I can't imagine this life without him. He makes me laugh, and challenges me to be a better person.
Our life isn't easy, but with him, it's still fun! Brian, your the love of my life, and I thank the Lord every day for you!
November 3 - The Lord continues to provide for us day after day. Our medical expenses and food budget (because of my special requirements) are extremely high, but the Lord always provides exactly what we need every month.
November 4 - I am so thankful for our friends and family who have stuck by us through this LONG journey. I know it's not easy for all of you as we have had to miss a lot important events, but we appreciate your understanding and your encouragement.
November 5 - My precious Lyme friends...I can't put into words how dear you are to me. Each one of you is such a priceless gift from the Lord. You have brought me through some of the toughest times. Thank you for being there for me. Your joy and attitude about life has ministered to my heart in so many ways. Your medical wisdom has helped us find answers to my health issues. God has used you abundantly in my life! One of these days girls, we will all be on a beach healthy and celebrating! I love you all!!!! <3
November 6 - I am thankful for our sweet and spunky puppy. I know, it sounds kind of ridiculous to be thankful for a dog, but it's a miracle we can have him since I am pretty much allergic to the world. Toby has brought so much spunk and laughter (he has quite the personality) to our lives since we are stuck at home most of the time. It's amazing because he is the only dog I can tolerate being around without having horrible allergies. That little guy is a miracle from the Lord for us.
November 7 - I am grateful for our house. It has been such a safe haven for me. It was so challenging to live in an apartment where we couldn't control what chemicals our neighbors used or if they smoked etc. It's a beautiful house and has enabled us to have people come and stay with us to help out or to visit.
Well, that's the first 7 days! I will continue to make a list and will post it periodically.
Now, onto the update. Since I am back on rifampin, we are actually seeing improvements! Yay! On Saturday, I did sleep in, but I didn't have to take a nap in the afternoon. I wasn't tired! I also was able to help with the dishes, pick up the house, fold a little laundry and take out the trash. That is a monumental step for me! We hope to keep seeing progress the longer I stay on this drug.
For now, the water issue has improved also. We are praising God for this! We were willing to get a PICC line, but didn't want to have to go through that process if we didn't have to. So, we are just hanging loose for now to see what will happen in the future.
Saturday night, we began to try the mast cell stabelizing protocol. Unfortunately, it was not successful. We are not sure what happened, but my symptoms actually did the opposite. I had a lot of other crazy symptoms that popped up too when I took my morning and nightly dose of Lyrica on top of that medicine. So, we can't figure out if I had a bad drug reaction or if my body just responded the wrong way (wouldn't be the first time) to the protocol. My reactions were definitely not listed in the side effect list of the drug on the internet. Surprise, surprise! :) Sunday was a bit rough, and I still think my body is trying to settle down. So, please be praying that things will upright soon!
We got my back my recent labs, and my kidneys are starting to show signs of elevation. It's not at a place where we need to be too concerned, but when I was off drugs they went back to normal, so we are praying this is not an upward trend because of rifampin. I really need to be able to handle this drug for about 4 or 5 months straight to see if we can finally beat this disease!
We are suppsoed to be traveling to California to see a new doctor on Saturday. She was recommended to us by my doctor in San Francisco and works with him a lot. She made a special Saturday appointment for us. We are still praying whether or not to go. I am kind of having some reservations about it, but not sure why. It will be expensive (first appointments always are), and it's kind of bad timing for Brian's work. Please pray that God will give us wisdom. Also, I just got an e-mail from our local Lyme support group. There is a new Lyme doctor actually in Tucson. She is real young, but just recently completed a fellowship with the physician who is the president of ILADS (International Lyme and Associated Diseases Society). My case is too complicated for someone with hardly any experience, but we have been looking for a local doctor who can work with my doc in San Francisco. I have a call into her office for an appointment. We shall see how this pans out.
I think, that is enough for today! We have a lot to be thankful for even during hard times! Blessing to you my friends!
Friday, October 21, 2011
Ever Changing!
Two posts in two days! Are you surprised? :) I had some time this afternoon, and I thought I would update you on my appointment with my doctor's PA. I just have to say how thankful I am for her wisdom, compassion and how proactive she is. I don't know where I would be without that office.
In general, we are still dealing with a severe infection of Bartonella. There are a few antibiotics that hit Bartonella. So, it's pretty obvious when you are off of them and your symptoms flare that you are still dealing with this infection. Boy, is it stubborn! As a side note, anyone who does research about Bartonella will see that the normal treatment is only a month or two of antibiotics (sometimes IV); however, that is for people who get it and treat it right away. I got it in 2003, but since no one could figure out what was wrong with me, it went undiagnosed until 2009. That is a long time to have an infection blazing through your body reaping havoc.
The PA said we should try to increase Rifampin. There is an optimal dose, but we have to get there gradually because this drug tends to hit me pretty hard. So, it was good to know that we aren't completely left without options. This was the key drug getting me well this summer. I think, I have plateued at the level I was on this summer, but hopefully, by increasing it, we can finally make some headway. We should know in the next couple of weeks. I do have to say that as soon as I began Rifampin, the excruciating bone pain and the migraine headaches lessened. So, we know it's still working to some extent. We just need it to work where it helps me beat the infection instead of just keeping me stable.
We talked to her about the possibility of pursuing a diagnosis of a mast cell disorder. What was exciting was that my doctor and the PA are currently really reasearching this right now. A patient (the friend who brought it to my attention) told him about it, and he took action. I am so thankful for a doctor who doesn't claim he knows all the answers. He is always willing to research and try things to help his patients get well.
They are wondering if this is a big key in some of their patients who have the horrible allergic reactions and chemical sensitivities like I do. The testing isn't always reliable (for most of the tests you have to be having a reaction at the time the test is performed or have had one recently for it to show up positive). What a lot of physicians do is put you on the treatment protocol and see how you respond. So, she has prescribed me the protcol and we are going to give it a shot. It is a relief that for now, I don't have to go through the biopsies (No Fun!). It will be interesting if all of these medications finally stabelize my system. Even though it would be hard to know this condition is permanent, it would be so amazing to finally get some relief from my reactions!
Now onto the water issue....I spoke to the PA and they want me to get a PICC line inserted so I can do IV fluids at home. Ugh, I just didn't want to have to do IV anymore. It's so stressful, and very inconvenient. Plus, a PICC line is much more restrictive than a PORT not to mention the increased risks of clots and infections. The thing is, you have to have a local doctor write a script to have it inserted at a local hospital or you have to go to San Francisco to have it done by the surgeon that my doctor works with. Obviously, I am not in the best condition to travel to SF, and Brian really can't take off work. We wanted to pursue it locally first.
I already had an appointment set up with my local doctor (who is totally against my Lyme and Bartonella diagnosis). I knew this was a REALLY long shot, but I wanted to take it because I am miserable. I thought, maybe, she would consider it since it doesn't have to deal directly with Lyme Disease (from her viewpoint). I did have my doc's PA call my local doctor to give her heads up about what the issue was. The PA called me right before my appointment and her words exactly were "Good Luck". Apparently, the phone call didn't go well, and we found that out really quickly during our appointment. My local doctor refused to do a PICC. She said we need to find the cause (which I agree with; however we are highly suspicious it's just the infection getting worse), but we appeased her. She is doing a number of tests on me. I guess it's good that she is actually willing to pursue something (the last time I was in there and gave her all my symptoms, she said "we just aren't going to figure those out" - basically telling me to live with them).
The one thing she did say was that my thyroid was a little on the high side. So, we are going to try lowering the dose and see what happens. That could account for the racing heart, but how that relates to the water issue, we aren't sure.
This is a great example of Lyme patients have to battle to get help. It's a struggle to make it through each day with all of these crazy symptoms. Most people would drive themselves to the ER when their arms and face go numb or when the room spins and you are short of breath for the 27th time that day, but not Lyme patients. They battle through the crazy symptoms while at the same time trying to convince the standard western medicine doctor that they are sick and need help. Whatever happened to doctors listening to patients and actually wanting to help them feel better? That is lost in the buracracy of insurance companies and managing risk. I walked out of my appointment today sad. I was sad knowing that what I experienced is what people all over the United States are experiencing every day. I am fortunate to have a brilliant Lyme doctor to help us through this nightmare, but so many people are not. I pray with all my heart that this changes some day.
Where do we go from here? Well, we are going to try and lower my thyroid meds on the off chance that it what is causing me all of these issues. That would be amazing if that resolved my water issues. However, if I don't improve, we will probably pursue getting a PICC because my body just can't live in this state forever. My local doctor did kind of give us a guideline to go by as what is just annoying dehydration symptoms verses what is dangerous and you need to go to the ER. So, we will keep a close eye on it and adjust accordingly. Please pray that this resolves.
Another thing that I am going to attempt to do is try to find a local doctor who doesn't avoid my issues and will actually work with us. It's tricky to even find a doctor who will accept you as a patient with my list of issues not to mention that the word "Lyme" on a medical chart scares away about every physician. I honestly have been denied outright by 4 physicians. They won't even let me come into the office for an appointment. Isn't that unbelievable? I have to say that even attempting to locate a doctor or to go through the "try out" phase exhausts me before I have even started the process. However, after we left today, we knew that our time with this physician was limited. So, please be praying for a miracle! Pray that God guides us to one quickly that takes our insurance and someone who is willing to help us navigate through this journey. Thanks friends! I will post updates when I can!
In general, we are still dealing with a severe infection of Bartonella. There are a few antibiotics that hit Bartonella. So, it's pretty obvious when you are off of them and your symptoms flare that you are still dealing with this infection. Boy, is it stubborn! As a side note, anyone who does research about Bartonella will see that the normal treatment is only a month or two of antibiotics (sometimes IV); however, that is for people who get it and treat it right away. I got it in 2003, but since no one could figure out what was wrong with me, it went undiagnosed until 2009. That is a long time to have an infection blazing through your body reaping havoc.
The PA said we should try to increase Rifampin. There is an optimal dose, but we have to get there gradually because this drug tends to hit me pretty hard. So, it was good to know that we aren't completely left without options. This was the key drug getting me well this summer. I think, I have plateued at the level I was on this summer, but hopefully, by increasing it, we can finally make some headway. We should know in the next couple of weeks. I do have to say that as soon as I began Rifampin, the excruciating bone pain and the migraine headaches lessened. So, we know it's still working to some extent. We just need it to work where it helps me beat the infection instead of just keeping me stable.
We talked to her about the possibility of pursuing a diagnosis of a mast cell disorder. What was exciting was that my doctor and the PA are currently really reasearching this right now. A patient (the friend who brought it to my attention) told him about it, and he took action. I am so thankful for a doctor who doesn't claim he knows all the answers. He is always willing to research and try things to help his patients get well.
They are wondering if this is a big key in some of their patients who have the horrible allergic reactions and chemical sensitivities like I do. The testing isn't always reliable (for most of the tests you have to be having a reaction at the time the test is performed or have had one recently for it to show up positive). What a lot of physicians do is put you on the treatment protocol and see how you respond. So, she has prescribed me the protcol and we are going to give it a shot. It is a relief that for now, I don't have to go through the biopsies (No Fun!). It will be interesting if all of these medications finally stabelize my system. Even though it would be hard to know this condition is permanent, it would be so amazing to finally get some relief from my reactions!
Now onto the water issue....I spoke to the PA and they want me to get a PICC line inserted so I can do IV fluids at home. Ugh, I just didn't want to have to do IV anymore. It's so stressful, and very inconvenient. Plus, a PICC line is much more restrictive than a PORT not to mention the increased risks of clots and infections. The thing is, you have to have a local doctor write a script to have it inserted at a local hospital or you have to go to San Francisco to have it done by the surgeon that my doctor works with. Obviously, I am not in the best condition to travel to SF, and Brian really can't take off work. We wanted to pursue it locally first.
I already had an appointment set up with my local doctor (who is totally against my Lyme and Bartonella diagnosis). I knew this was a REALLY long shot, but I wanted to take it because I am miserable. I thought, maybe, she would consider it since it doesn't have to deal directly with Lyme Disease (from her viewpoint). I did have my doc's PA call my local doctor to give her heads up about what the issue was. The PA called me right before my appointment and her words exactly were "Good Luck". Apparently, the phone call didn't go well, and we found that out really quickly during our appointment. My local doctor refused to do a PICC. She said we need to find the cause (which I agree with; however we are highly suspicious it's just the infection getting worse), but we appeased her. She is doing a number of tests on me. I guess it's good that she is actually willing to pursue something (the last time I was in there and gave her all my symptoms, she said "we just aren't going to figure those out" - basically telling me to live with them).
The one thing she did say was that my thyroid was a little on the high side. So, we are going to try lowering the dose and see what happens. That could account for the racing heart, but how that relates to the water issue, we aren't sure.
This is a great example of Lyme patients have to battle to get help. It's a struggle to make it through each day with all of these crazy symptoms. Most people would drive themselves to the ER when their arms and face go numb or when the room spins and you are short of breath for the 27th time that day, but not Lyme patients. They battle through the crazy symptoms while at the same time trying to convince the standard western medicine doctor that they are sick and need help. Whatever happened to doctors listening to patients and actually wanting to help them feel better? That is lost in the buracracy of insurance companies and managing risk. I walked out of my appointment today sad. I was sad knowing that what I experienced is what people all over the United States are experiencing every day. I am fortunate to have a brilliant Lyme doctor to help us through this nightmare, but so many people are not. I pray with all my heart that this changes some day.
Where do we go from here? Well, we are going to try and lower my thyroid meds on the off chance that it what is causing me all of these issues. That would be amazing if that resolved my water issues. However, if I don't improve, we will probably pursue getting a PICC because my body just can't live in this state forever. My local doctor did kind of give us a guideline to go by as what is just annoying dehydration symptoms verses what is dangerous and you need to go to the ER. So, we will keep a close eye on it and adjust accordingly. Please pray that this resolves.
Another thing that I am going to attempt to do is try to find a local doctor who doesn't avoid my issues and will actually work with us. It's tricky to even find a doctor who will accept you as a patient with my list of issues not to mention that the word "Lyme" on a medical chart scares away about every physician. I honestly have been denied outright by 4 physicians. They won't even let me come into the office for an appointment. Isn't that unbelievable? I have to say that even attempting to locate a doctor or to go through the "try out" phase exhausts me before I have even started the process. However, after we left today, we knew that our time with this physician was limited. So, please be praying for a miracle! Pray that God guides us to one quickly that takes our insurance and someone who is willing to help us navigate through this journey. Thanks friends! I will post updates when I can!
Thursday, October 20, 2011
Too Long...
Wow! I have been a really bad blogger lately. Sorry about that. I want to do it more, but we have some crazy health stuff going on and between that and working, I just don't have a lot of time or energy these days. It's been way too long, so I thought I needed to write this before a month goes by and I have to write you a book to catch you up on everything. Before I start giving you an update, I want to give you a set of verses that have really been encouraging lately.
"My soul, wait only upon God and silently submit to Him; for my hope and expectation are from Him. He only is my Rock and my Salvation; He is my Defense and my Fortress, I shall not be moved. With God rests my salvation and my glory; He is my Rock of unyielding strength and impenetrable hardness, and my refuge is in God! Trust in, lean on, rely on, and have confidence in Him at all times, you people; pour out your hearts before Him. God is a refuge for us (a fortress and a high tower). Selah [pause, and calmly think of that]!" Psalm 62:5-8 Amplified Bible
I am not sure if I have posted these verses before, but I stumbled across them the other night during my devotional time. I love how the Amplified Bible describes the Lord, our Rock, with "unyielding strength and impenetrable hardness". I imagine the Lord as my protective barrier who won't let anything get to me without first going through Him. I also like how it definites trust. Sometimes, I just need things spelled out for me. I know that I am supposed to rely on God for everything I need, but I like how this version of scripture states what exactly "trust" looks like.
I do want to say that we found out that Brian did PASS the CPA exam! We are so thrilled!! Now, all he has to do is finish his class and complete a couple other steps. His goal is to try and get it done by Christmas, but work has been crazy for him and my health hasn't been good. So, it's looking like that might not happen. All in God's timing though! :) I am so proud of him. I know having that part done is a huge relief for him.
I actually started this post a couple of weeks ago. However, life got crazy, I got sicker and it just got set on the back burner. Let me catch you up...
On October 7th, Brian and I got up at 2am to head to Albuquerque, NM to see the neurologist that my doctor recommended. We were really looking forward to this appointment. After my interaction with this physician on the phone and other things we had heard about her, we thought she would be a great addition to our medical resources. However, once we got there, it didn't go as well as we expected. She did know a lot about the autonomic nervous system and how the brain has been affected by the infections; but she really didn't give us any new tools. She was a pretty big proponent of using a line of herbals to fight the infection which would be great except that I am deathly allergic to the alcohol that it's preserved in. So, although it was nice to get out of Tucson and spend some time with my husband, we don't think we will be working with this particular doctor. It's sad because at this point, we are really running out of options.
Since I had the water issue that we thought was related to rifampin, and we were waiting for our appointment with the new doctor (who didn't want me taking antibiotics anymore), until this past Tuesday I had been off treatment (except for a low dose of amoxicillin) for 6 weeks. Let me tell you, this was NOT good. It has about killed my body. I won't list all of my symptoms, but let's just say they are worse than they have ever been. My body has also started not aborbing nutrients very well. So, my blood work is all funky.
Guess what popped up again last week? - The water issue! Fun times! Everytime I drank water, it would go right through me. It's like my digestive system has stopped being able to absorb it. I would get so thirsty that I would drink a ton of glasses, but I still had all the symptoms of dehydration. It got so bad and started doing funky things to my heart, so we ended up in the ER last Thursday. Of course, they couldn't figure out what was causing it (especially since I haven't been on Rifampin), but we went to the good hospital, so they actually didn't question any of my diagnosises. They gave me IV fluids, and I actually was able to retain the water. So, it has something to do with my digestive tract. They had never heard of that before. I am not surprised, lol. I tend to not be a textbook case. CRAZY! The water issue comes and goes. Some days are better than others.
Another development that we are going to pursuing is the diagnosis of a condition of Mastocytosis or a form of it called Mast Cell Activation Disorder (MCAD). It was kind of a God thing how this came about. For awhile now, my Lyme doctor has been puzzled why I am so reactive. I did seem to improve this summer when we got the infection down, but my body is just so fragile, and I never recovered fully. Seven years ago, I stumbled across this disease, but frankly, it scared me, so I put it on the back burner. I also didn't have the blood or other lab markers (Mayo Clinic did test me for it), so we put the idea to rest. However, last week, two different people (a friend and my nutritionist) w/in 24 hours randomly brought this to my attention.
Bascially, Mastocytosis is where you body makes too many mast cells (histamine cells). It seems harmless, but it's not. It can cause a lot of trouble in your body. You can be born with the systemic version or you can acquire it later in life either set off by toxic chemical exposure or an infection (we are guessing it's infection for me). When I started researching the symptoms list, I realized that I now have about 21 out of the 29 symptoms. What is interesting is that in the last 3 years, they discovered a lighter version of the disease which is called MCAD. People who have the lighter form don't necessarily have the blood and other lab markers, but they do often show up positive if you did a skin biopsy or a bone marrow biopsy.
There are different forms of this disease and one version is malignant. However, the chance I have that version is extremely small. All in all though, it's a bit scary having to go through this process. It's also frustrating because my local primary doctor doesn't want to look into it, and my allergist wouldn't let me have an appointment because he has stopped seeing patients who aren't interested in allergy shots. Ugh! My Lyme doctor will be more than willing to pursue it and learn about it, but we just wanted to find someone locally who was familiar with it and could help us for once. We don't know how invasive we will get as far as the testing goes. I have had so much severe bone pain lately that we are considering a bone marrow biopsy, but I wish we didn't have to make these types of decisions ourselves. There is an AMAZING clinic in Boston, MA that has the top researchers in the world who specialize in this disease, but that is WAY too far for us to drive. So, once again, we are in a dilemma. AHHHH the constant drama gets old. :P
So, that's where we are at. We are exhausted and emotionally drained. It's been hard to try and come to grips that there is a high likely hood that I have a permanent disease on top of all of these infections. Again, when we have gotten the infections under control, things somewhat improve, but if I have this condition, this could be the cause of why I don't get totally well. That's really why I haven't updated. It's just hard to put this all into words. I thought about not writing about this until we have an official diagnosis, but we need prayer. We are desperately praying that someone will help us pursue this new condition. We need to know if this is playing a factor as to why I am not getting well. We are also praying for all test results as far as this disease to come back negative. If you would join with us, we would appreciate it. Please also be praying for our emotions and stamina. I can't tell how hard this last month has been. God is sustaining us, and we are hanging in there, but we really need for things to take a turn for the better. It's hard to watch my body keep crashing because we know it can only take so much. Also, please be praying for my job. I love it, but it's getting harder to make it through each day. It's super busy right now which is great for us financially, but very difficult when I have to work 10 hours a day. Thankfully, I can work from my bed, but it's still hard.
Well, I need to try and get some sleep since I actually have about 2 hours here before my phone appointment with my doctor's PA. I will try and update you this weekend. Thanks for praying friends!
"My soul, wait only upon God and silently submit to Him; for my hope and expectation are from Him. He only is my Rock and my Salvation; He is my Defense and my Fortress, I shall not be moved. With God rests my salvation and my glory; He is my Rock of unyielding strength and impenetrable hardness, and my refuge is in God! Trust in, lean on, rely on, and have confidence in Him at all times, you people; pour out your hearts before Him. God is a refuge for us (a fortress and a high tower). Selah [pause, and calmly think of that]!" Psalm 62:5-8 Amplified Bible
I am not sure if I have posted these verses before, but I stumbled across them the other night during my devotional time. I love how the Amplified Bible describes the Lord, our Rock, with "unyielding strength and impenetrable hardness". I imagine the Lord as my protective barrier who won't let anything get to me without first going through Him. I also like how it definites trust. Sometimes, I just need things spelled out for me. I know that I am supposed to rely on God for everything I need, but I like how this version of scripture states what exactly "trust" looks like.
I do want to say that we found out that Brian did PASS the CPA exam! We are so thrilled!! Now, all he has to do is finish his class and complete a couple other steps. His goal is to try and get it done by Christmas, but work has been crazy for him and my health hasn't been good. So, it's looking like that might not happen. All in God's timing though! :) I am so proud of him. I know having that part done is a huge relief for him.
I actually started this post a couple of weeks ago. However, life got crazy, I got sicker and it just got set on the back burner. Let me catch you up...
On October 7th, Brian and I got up at 2am to head to Albuquerque, NM to see the neurologist that my doctor recommended. We were really looking forward to this appointment. After my interaction with this physician on the phone and other things we had heard about her, we thought she would be a great addition to our medical resources. However, once we got there, it didn't go as well as we expected. She did know a lot about the autonomic nervous system and how the brain has been affected by the infections; but she really didn't give us any new tools. She was a pretty big proponent of using a line of herbals to fight the infection which would be great except that I am deathly allergic to the alcohol that it's preserved in. So, although it was nice to get out of Tucson and spend some time with my husband, we don't think we will be working with this particular doctor. It's sad because at this point, we are really running out of options.
Since I had the water issue that we thought was related to rifampin, and we were waiting for our appointment with the new doctor (who didn't want me taking antibiotics anymore), until this past Tuesday I had been off treatment (except for a low dose of amoxicillin) for 6 weeks. Let me tell you, this was NOT good. It has about killed my body. I won't list all of my symptoms, but let's just say they are worse than they have ever been. My body has also started not aborbing nutrients very well. So, my blood work is all funky.
Guess what popped up again last week? - The water issue! Fun times! Everytime I drank water, it would go right through me. It's like my digestive system has stopped being able to absorb it. I would get so thirsty that I would drink a ton of glasses, but I still had all the symptoms of dehydration. It got so bad and started doing funky things to my heart, so we ended up in the ER last Thursday. Of course, they couldn't figure out what was causing it (especially since I haven't been on Rifampin), but we went to the good hospital, so they actually didn't question any of my diagnosises. They gave me IV fluids, and I actually was able to retain the water. So, it has something to do with my digestive tract. They had never heard of that before. I am not surprised, lol. I tend to not be a textbook case. CRAZY! The water issue comes and goes. Some days are better than others.
Another development that we are going to pursuing is the diagnosis of a condition of Mastocytosis or a form of it called Mast Cell Activation Disorder (MCAD). It was kind of a God thing how this came about. For awhile now, my Lyme doctor has been puzzled why I am so reactive. I did seem to improve this summer when we got the infection down, but my body is just so fragile, and I never recovered fully. Seven years ago, I stumbled across this disease, but frankly, it scared me, so I put it on the back burner. I also didn't have the blood or other lab markers (Mayo Clinic did test me for it), so we put the idea to rest. However, last week, two different people (a friend and my nutritionist) w/in 24 hours randomly brought this to my attention.
Bascially, Mastocytosis is where you body makes too many mast cells (histamine cells). It seems harmless, but it's not. It can cause a lot of trouble in your body. You can be born with the systemic version or you can acquire it later in life either set off by toxic chemical exposure or an infection (we are guessing it's infection for me). When I started researching the symptoms list, I realized that I now have about 21 out of the 29 symptoms. What is interesting is that in the last 3 years, they discovered a lighter version of the disease which is called MCAD. People who have the lighter form don't necessarily have the blood and other lab markers, but they do often show up positive if you did a skin biopsy or a bone marrow biopsy.
There are different forms of this disease and one version is malignant. However, the chance I have that version is extremely small. All in all though, it's a bit scary having to go through this process. It's also frustrating because my local primary doctor doesn't want to look into it, and my allergist wouldn't let me have an appointment because he has stopped seeing patients who aren't interested in allergy shots. Ugh! My Lyme doctor will be more than willing to pursue it and learn about it, but we just wanted to find someone locally who was familiar with it and could help us for once. We don't know how invasive we will get as far as the testing goes. I have had so much severe bone pain lately that we are considering a bone marrow biopsy, but I wish we didn't have to make these types of decisions ourselves. There is an AMAZING clinic in Boston, MA that has the top researchers in the world who specialize in this disease, but that is WAY too far for us to drive. So, once again, we are in a dilemma. AHHHH the constant drama gets old. :P
So, that's where we are at. We are exhausted and emotionally drained. It's been hard to try and come to grips that there is a high likely hood that I have a permanent disease on top of all of these infections. Again, when we have gotten the infections under control, things somewhat improve, but if I have this condition, this could be the cause of why I don't get totally well. That's really why I haven't updated. It's just hard to put this all into words. I thought about not writing about this until we have an official diagnosis, but we need prayer. We are desperately praying that someone will help us pursue this new condition. We need to know if this is playing a factor as to why I am not getting well. We are also praying for all test results as far as this disease to come back negative. If you would join with us, we would appreciate it. Please also be praying for our emotions and stamina. I can't tell how hard this last month has been. God is sustaining us, and we are hanging in there, but we really need for things to take a turn for the better. It's hard to watch my body keep crashing because we know it can only take so much. Also, please be praying for my job. I love it, but it's getting harder to make it through each day. It's super busy right now which is great for us financially, but very difficult when I have to work 10 hours a day. Thankfully, I can work from my bed, but it's still hard.
Well, I need to try and get some sleep since I actually have about 2 hours here before my phone appointment with my doctor's PA. I will try and update you this weekend. Thanks for praying friends!
Tuesday, September 20, 2011
It's always something! :)
Hey folks! I am sorry it's been so long since I have updated. I have been really struggling physically, and it's taken everything I have to make it through my work shifts. I pretty much crash at the end of the day and on the weekends. I have quite a bit to update you on, so let's get started!
Our appointment with my Lyme doctor in San Francisco went pretty well. It's always good to get his wisdom on our situation. We came armed with about two pages of questions, and we actually got through all of them. I love my doc. He is so relaxed even though he deals with a lot of intense health situations with his patients. He is definitely a perfect fit for my personality. :P We discussed about what happened in my body to make me crash like I did after I had been doing so well. He doesn't necessarily think it's because I took a two-week break from antibiotics. All that break did was tell us that the infection is still very present in my body. He thinks something else (an outside factor) caused the backslide. However, what that was, no one is really sure.
So, what do we do from here? Well, I am just too unstable to hit my body very hard with treatment. He thinks we are kind of on a tipping point. If we push my body too hard, we could tip over into a very bad place. So, he said our goal is to stabilize my system so that we can attack the infection big time some time in the future. This was a bit frustrating for me as I just want to be done with this whole thing. However, this isn't a sprint; it's a marathon. We do want to fight the infections, but we can't damage my body in the process.
One thing good about my doctor is that he has a large number of resources at his disposal. He knows a lot of incredibly amazing physicians who treat Lyme Disease in all different areas of medicine, and he loves to go at treatment with a team approach. So, he gave us a list of people to consult which included both a nutritionist (to help with my super challenging and restrictive diet) and a neurologist (she specializes in working with the autonomic nervous system-my main issue that causes me to be so unstable).
We decided that we are also going to work on fighting my Candida issue. For months now, I have been on maintenance treatment, but he thinks that the Candida might be causing my allergies to get worse. So, we are going to really go after it with a huge hope that this will help my allergic reactions and chemical sensitivities to calm down.
He did say that my extreme herx reaction when I took my antibiotics after my two-week break is a good sign that my Bartonella infection is still responsive to treatment. So, we are very thankful for that. We just need to get me to a place where I can tolerate using more intense drugs without causing my body to crash at the same time. I am terrible at waiting especially after being sick all of these years. So, you can imagine how this is a bit frustrating! Since Rifampin has been such a good drug for me, he wants to try to increase the dose to see if that will be effective before trying a different drug to fight Bartonella. We shall see what happens!
Our trip, in general, went smoothly. I never do very well in San Francisco. The hotel was fine, but I think the high mold count in that area always sets me off. So, Brian and I left early Saturday morning to drive back home. It's always nice to get out of town, but with all of the trouble I usually have, it's EXTREMELY nice to get back home to a more stable and controlled environment.
Once we got home, unfortunately, life did not go back to normal. I felt awful, and we had a new and unpleasant condition pop up. Starting last Monday, every time I drank a glass of water, it wouldn't stay in me longer than 10 minutes - lots of trips to the restroom! The condition is called Diabetes Insipidus. It's where your kidneys do not retain water because you have too much of a certain kind of hormone. For 4 days, I was in a constant state of dehydration. It was horrible, and I felt like I was just watching my body crash. We worked with my doctor quite a bit, and he ordered a test to determine whether or not my symptoms were caused by the above condition. We should hear back today. He told me to stop Rifampin because it is known for messing with the hormones in your body. It could be indirectly causing this issue. Thankfully, things are slowly improving. I am still having trouble keeping water in my body, but it's not as bad. I am not in such a crazy dehydrated state.
Since we have been off Rifampin, my Bartonella symptoms have gotten worse. My dysautonomia has come back full force. It's hard to get through the day with all of the symptoms. So, now you know why it's been so challenging lately! We have kind of been in survival mode. Brian had to take off work last Thursday so that I could go to the Urgent Care (we needed to make sure my dehydration wasn't in the danger zone) and then to go get labs drawn. He is so amazing! The sacrifices he makes for me are so humbling. I thank the Lord for him every day!
The final update is I have started working the neurologist that my Lyme doctor recommended. I had an initial phone consult with her yesterday, and she is extremely smart. She understood how Lyme has impacted my autonomic nervous system better than any other doctor has. She has an extensive background in biological neurology along with treating using holistic and integrative measures AND she takes insurance. Whoohoo! My appointment went well. Obviously, I am very sick (she only takes the sickest patients as my case was pre-screened), but it is good to now have her on our team. She will work directly with my Lyme doctor to help stabilize my system so we can go after the infection. We have such a long road, but it's good to have such amazing doctors on our side! We have an appointment in her office in New Mexico on October 7th. We are excited (but guarded since we have seen so many doctors) to learn about her approach and see how it will help me. We definitely trust our Lyme doctor's opinion. So, if he thinks she will be able to help me, we are hopeful!
Here are current prayer requests:
Our appointment with my Lyme doctor in San Francisco went pretty well. It's always good to get his wisdom on our situation. We came armed with about two pages of questions, and we actually got through all of them. I love my doc. He is so relaxed even though he deals with a lot of intense health situations with his patients. He is definitely a perfect fit for my personality. :P We discussed about what happened in my body to make me crash like I did after I had been doing so well. He doesn't necessarily think it's because I took a two-week break from antibiotics. All that break did was tell us that the infection is still very present in my body. He thinks something else (an outside factor) caused the backslide. However, what that was, no one is really sure.
So, what do we do from here? Well, I am just too unstable to hit my body very hard with treatment. He thinks we are kind of on a tipping point. If we push my body too hard, we could tip over into a very bad place. So, he said our goal is to stabilize my system so that we can attack the infection big time some time in the future. This was a bit frustrating for me as I just want to be done with this whole thing. However, this isn't a sprint; it's a marathon. We do want to fight the infections, but we can't damage my body in the process.
One thing good about my doctor is that he has a large number of resources at his disposal. He knows a lot of incredibly amazing physicians who treat Lyme Disease in all different areas of medicine, and he loves to go at treatment with a team approach. So, he gave us a list of people to consult which included both a nutritionist (to help with my super challenging and restrictive diet) and a neurologist (she specializes in working with the autonomic nervous system-my main issue that causes me to be so unstable).
We decided that we are also going to work on fighting my Candida issue. For months now, I have been on maintenance treatment, but he thinks that the Candida might be causing my allergies to get worse. So, we are going to really go after it with a huge hope that this will help my allergic reactions and chemical sensitivities to calm down.
He did say that my extreme herx reaction when I took my antibiotics after my two-week break is a good sign that my Bartonella infection is still responsive to treatment. So, we are very thankful for that. We just need to get me to a place where I can tolerate using more intense drugs without causing my body to crash at the same time. I am terrible at waiting especially after being sick all of these years. So, you can imagine how this is a bit frustrating! Since Rifampin has been such a good drug for me, he wants to try to increase the dose to see if that will be effective before trying a different drug to fight Bartonella. We shall see what happens!
Our trip, in general, went smoothly. I never do very well in San Francisco. The hotel was fine, but I think the high mold count in that area always sets me off. So, Brian and I left early Saturday morning to drive back home. It's always nice to get out of town, but with all of the trouble I usually have, it's EXTREMELY nice to get back home to a more stable and controlled environment.
Once we got home, unfortunately, life did not go back to normal. I felt awful, and we had a new and unpleasant condition pop up. Starting last Monday, every time I drank a glass of water, it wouldn't stay in me longer than 10 minutes - lots of trips to the restroom! The condition is called Diabetes Insipidus. It's where your kidneys do not retain water because you have too much of a certain kind of hormone. For 4 days, I was in a constant state of dehydration. It was horrible, and I felt like I was just watching my body crash. We worked with my doctor quite a bit, and he ordered a test to determine whether or not my symptoms were caused by the above condition. We should hear back today. He told me to stop Rifampin because it is known for messing with the hormones in your body. It could be indirectly causing this issue. Thankfully, things are slowly improving. I am still having trouble keeping water in my body, but it's not as bad. I am not in such a crazy dehydrated state.
Since we have been off Rifampin, my Bartonella symptoms have gotten worse. My dysautonomia has come back full force. It's hard to get through the day with all of the symptoms. So, now you know why it's been so challenging lately! We have kind of been in survival mode. Brian had to take off work last Thursday so that I could go to the Urgent Care (we needed to make sure my dehydration wasn't in the danger zone) and then to go get labs drawn. He is so amazing! The sacrifices he makes for me are so humbling. I thank the Lord for him every day!
The final update is I have started working the neurologist that my Lyme doctor recommended. I had an initial phone consult with her yesterday, and she is extremely smart. She understood how Lyme has impacted my autonomic nervous system better than any other doctor has. She has an extensive background in biological neurology along with treating using holistic and integrative measures AND she takes insurance. Whoohoo! My appointment went well. Obviously, I am very sick (she only takes the sickest patients as my case was pre-screened), but it is good to now have her on our team. She will work directly with my Lyme doctor to help stabilize my system so we can go after the infection. We have such a long road, but it's good to have such amazing doctors on our side! We have an appointment in her office in New Mexico on October 7th. We are excited (but guarded since we have seen so many doctors) to learn about her approach and see how it will help me. We definitely trust our Lyme doctor's opinion. So, if he thinks she will be able to help me, we are hopeful!
Here are current prayer requests:
- Please be praying that I can consistently hold water in my system. The dehydration symptoms are very difficult to tolerate. It kind of feels like you are going crazy or just watching your body quit on you. Please pray for continued improvement! Please also pray for my dysautonomia to improve. I am having a lot of trouble with random tachycardia (rapid heart beat) and feeling like I am going to pass out.
- Please start praying for our appointment. We really need this new doctor to help upright my system. Until we do that, we can't hit the infections like we need to. Please be praying for my appointment on October 7th.
- Please pray that the infection won't get out of control as we try to stabilize my body. The doctor in New Mexico and my doctor in San Francisco are going to try to keep me on a low maintenance dose of treatment during this time. However, my Bartonella infection is getting worse by the day (the symptoms are increasing). Please pray that God place his hands on it and that He would protect me.
- Please that I will have endurance to make it through my job. I am working close to 40 hours a week from my house and from my bed. :) I am so thankful for being able to work virtually, but it's getting harder and harder to make it through each day.
- Please pray for endurance. This latest round has hit us hard. We just feel like we are in survival mode each day. We don't want to live like that. We want to be working for God's kingdom. Please pray that God would continue to use us even though we feel we have so little to give right now. Also, please pray against discouragement. We have a big battle up ahead, but God has given us a good medical team. Please pray that we continue to lay all of our cares upon Christ resting in the fact that he will provide financially, physically and emotionally.
We are still waiting on Brian's results from his CPA exam. He should find out this week! We are desperately praying that he passed this last section. Life is just too crazy to even think about studying for that difficult exam again. We should hear from my doctor today about what our next step should be with the current issues we are facing. I will try and update soon! Blessing to all of you!
Wednesday, September 7, 2011
Prayers Appreciated!
Hey folks! I wanted to write you a quick update with some pretty important prayer requests as we leave for our doctor's appointment in California. It's been a pretty rough week for me physically. My body seems to be freaking out a bit. We have experienced a lot of this before, but it's never fun the second or third time around.
I am a lot more sensitive to things allergy-wise. This is not good timing since we will be traveling and staying in a hotel. However, we have done it before with me in this condition, and God has always pulled us through. So, we are just walking in faith He will protect me on this trip too!
Yesterday, we got some not so good news as a result of a recent lab draw. Apparently, my kidneys are not handling antibiotic treatment anymore. I have elevated kidney function levels. This was pretty discouraging for us. My local doctor said we need to be careful that I don't tip over into mild kidney failure. So, something definitely needs to change. The problem is I don't handle natural treatment protocols very well (like herbs and things) because of how allergic I am. When people's bodies stop tolerating antibiotics that is where people usually turn. However, I have extreme allergic reactions to a lot of that stuff. So, we kind of feel backed into a corner. If we stop antibiotic treatment and don't do anything, the infection will take over. However, if we keep going on our current course, my kidneys will stop functioning and that is not good at all. You kind of need those to live. :P
Maybe, we are just getting to the point where the only option is for God to do a miraculous healing. Brian and I were talking about that exact thing last night. We feel like we are kind of backed into a corner and the only way out is to look up. Maybe, that is where we should be all the time, but humanly, it's definitely hard to do unless all physical earthly options are exhausted. At least it's hard for me to do consistently. :)
So, our appointment could not come at a better time. We have so many decisions to make in such a short amount of time. My appointment usually only lasts about 45 minutes. Please pray that God would multiply our time with the doctor, and that he will have wisdom exactly what to do. Also, please pray for safety as we travel and that God would protect my body. I have started reacting to water again and some of my food too. So, we are facing a lot of challenges right now. We are trusting God that He will come through in all of these areas.
Yesterday, before I found out that news, I was reading my bible and thinking about all that God has helped us overcome. We have had so many victories as we have fought this battle. He has helped us win with a lot stacked against us. He has been our provider and our sustainer. So, as we keep walking down this road, we will once again lay our plans at the Lord's feet. We are praying for a miracle and surrendering to His will.
We'll try to update after our appointment on Friday! Thanks for your prayers! Remember, to give God the glory no matter how bleak things look. He will make streams in the desert! :) Isaiah 35:6
I am a lot more sensitive to things allergy-wise. This is not good timing since we will be traveling and staying in a hotel. However, we have done it before with me in this condition, and God has always pulled us through. So, we are just walking in faith He will protect me on this trip too!
Yesterday, we got some not so good news as a result of a recent lab draw. Apparently, my kidneys are not handling antibiotic treatment anymore. I have elevated kidney function levels. This was pretty discouraging for us. My local doctor said we need to be careful that I don't tip over into mild kidney failure. So, something definitely needs to change. The problem is I don't handle natural treatment protocols very well (like herbs and things) because of how allergic I am. When people's bodies stop tolerating antibiotics that is where people usually turn. However, I have extreme allergic reactions to a lot of that stuff. So, we kind of feel backed into a corner. If we stop antibiotic treatment and don't do anything, the infection will take over. However, if we keep going on our current course, my kidneys will stop functioning and that is not good at all. You kind of need those to live. :P
Maybe, we are just getting to the point where the only option is for God to do a miraculous healing. Brian and I were talking about that exact thing last night. We feel like we are kind of backed into a corner and the only way out is to look up. Maybe, that is where we should be all the time, but humanly, it's definitely hard to do unless all physical earthly options are exhausted. At least it's hard for me to do consistently. :)
So, our appointment could not come at a better time. We have so many decisions to make in such a short amount of time. My appointment usually only lasts about 45 minutes. Please pray that God would multiply our time with the doctor, and that he will have wisdom exactly what to do. Also, please pray for safety as we travel and that God would protect my body. I have started reacting to water again and some of my food too. So, we are facing a lot of challenges right now. We are trusting God that He will come through in all of these areas.
Yesterday, before I found out that news, I was reading my bible and thinking about all that God has helped us overcome. We have had so many victories as we have fought this battle. He has helped us win with a lot stacked against us. He has been our provider and our sustainer. So, as we keep walking down this road, we will once again lay our plans at the Lord's feet. We are praying for a miracle and surrendering to His will.
We'll try to update after our appointment on Friday! Thanks for your prayers! Remember, to give God the glory no matter how bleak things look. He will make streams in the desert! :) Isaiah 35:6
Thursday, September 1, 2011
Up down and all around...
Hey folks! Sorry it's been so long. I could have written last week, but I just wasn't in a good emotional place. It's been pretty hard to deal with the backslide, so writing about it seemed overwhelming. I am doing a bit better now, so I am finally in a place where I could handle sharing about it.
Hmmm...where to start? First, I want to say thank you to of all of you who have been a listening ear and such an encouragement to me. I have a couple of dear friends who are also sick with Lyme. Even though they are struggling, they never fail to encourage and lift others up. Thank you so much girls! My husband has also been amazing. He listens to me, encourages me and makes me always see the good side of our situation. I am one lucky girl!
This journey is filled with so many ups and downs. When you feel great, you celebrate, but at the same time you are cautious because you know things could change quickly. I remember in June and July when I was doing so well, it was hard for me to really get excited because I was worried that something would happen. Just about the time when I started coming around emotionally and even started making plans for the future, my body decided to take a trip back to never never land. :P So, that is why this has been so hard to deal with. I got a taste of what it was like to start living a normal life (well not normal to a regular person, but a little bit more normal for me), and then I have had to deal with having to go back to being extremely careful what I come in contact with. It has hit me hard emotionally.
After I relapsed, Brian and I decided we would contact our local chuch (that we went to only a couple of times), and tell them our situation. We were going to ask if we could have some people come to our house every so often so we could get some Christian fellowship. However, now I am at a place where I get set off so easily and the reactions affect my blood pressure. So, we can't do that at this time. That is hard to swallow as I think finally, after 6 years of being isolated, it is really starting to get to us. Brian is going to start attending church regularly and wants to get involved in a men's bible study. So, the strict isolation is more on my side. I have still been able to take some trips in the car to stores. I have even been in a few, but I can't stay very long without getting pretty sick.
Lately, I have been reading James 1. A few of the verses have been really ministering to my heart and carrying me through this tough time. I will share a few with you...
"Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So, let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. James 1:2-4 NLT
I really like the translation of the Message for this same passage. It says...
"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in anyway."
I love the word picture of "faith-life". That is what life is all about. It's one big faith walk; however, we have our loving savior walking on that path with us. It's not a smooth journey, but we can take comfort in the fact that Jesus is there to hold us up when times get tough and won't let us slip. I know it's such a Christian cliche to say, but it's really true. I often just visualize the Lord taking my hand and leading us through this rocky time. It helps!
The other part in these verses that I like is when it says "don't try to get out of anything prematurely". Boy, is that convicting. If I only considered my human nature and desires, I would gladly take an escape hatch right now; however, that is not how I will grow, and would not be part of God's plan. It's been hard and tough, and lately, to be honest, I have wanted to give up, but that is not how I should run this race. I need to do what our wedding verse said (Hebrews 12:1-2) which is to run this race with perseverance keeping our eyes focused on the only place it they should be - on Jesus.
This week is a HUGE week for us. We have been waiting and waiting and waiting for this week. Okay, I have been desperately waiting for September 9th. On September 8th, we will leave Tucson to drive to San Francisco for my doctor's appointment on the 9th. It's at 2pm. Please be praying for this. We have so many questions to get answered in a short amount of time. We have a lot of decisions that need to be made, and we really need a new treatment plan. Please pray that we can bring our doctor quickly up to speed, and that he will know exactly what to do with me. We want to beat this thing, and we desperately need the Lord to give him the wisdom on how to do it with my crazy body. Please also be praying for safe travel and no reactions. It's been a trying month with how my body has freaked out. I seem to be pretty unstable, so we are not sure how well I will tolerate scent filled environments and the long car ride. Also, please be praying that Brian will be blessed with energy to drive for the trip. I am a bit too out of it to help with the driving, and it's always so demanding on him when we go up and back with in 72 hours (it's a 15 hour drive from Tucson). His work has been pretty intense lately, so he is already going into this trip pretty tired.
Well, I need to get to bed. Thanks in advance for your prayers. We'll update when we get back. Through God, we will have the victory!!! Below is a song that has been really encouraging to me. I pray it will bless you also. You will have to hit pause on my blog music player before listening to the song. Enjoy!
Hmmm...where to start? First, I want to say thank you to of all of you who have been a listening ear and such an encouragement to me. I have a couple of dear friends who are also sick with Lyme. Even though they are struggling, they never fail to encourage and lift others up. Thank you so much girls! My husband has also been amazing. He listens to me, encourages me and makes me always see the good side of our situation. I am one lucky girl!
This journey is filled with so many ups and downs. When you feel great, you celebrate, but at the same time you are cautious because you know things could change quickly. I remember in June and July when I was doing so well, it was hard for me to really get excited because I was worried that something would happen. Just about the time when I started coming around emotionally and even started making plans for the future, my body decided to take a trip back to never never land. :P So, that is why this has been so hard to deal with. I got a taste of what it was like to start living a normal life (well not normal to a regular person, but a little bit more normal for me), and then I have had to deal with having to go back to being extremely careful what I come in contact with. It has hit me hard emotionally.
After I relapsed, Brian and I decided we would contact our local chuch (that we went to only a couple of times), and tell them our situation. We were going to ask if we could have some people come to our house every so often so we could get some Christian fellowship. However, now I am at a place where I get set off so easily and the reactions affect my blood pressure. So, we can't do that at this time. That is hard to swallow as I think finally, after 6 years of being isolated, it is really starting to get to us. Brian is going to start attending church regularly and wants to get involved in a men's bible study. So, the strict isolation is more on my side. I have still been able to take some trips in the car to stores. I have even been in a few, but I can't stay very long without getting pretty sick.
Lately, I have been reading James 1. A few of the verses have been really ministering to my heart and carrying me through this tough time. I will share a few with you...
"Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So, let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. James 1:2-4 NLT
I really like the translation of the Message for this same passage. It says...
"Consider it a sheer gift, friends, when tests and challenges come at you from all sides. You know that under pressure, your faith-life is forced into the open and shows its true colors. So don't try to get out of anything prematurely. Let it do its work so you become mature and well-developed, not deficient in anyway."
I love the word picture of "faith-life". That is what life is all about. It's one big faith walk; however, we have our loving savior walking on that path with us. It's not a smooth journey, but we can take comfort in the fact that Jesus is there to hold us up when times get tough and won't let us slip. I know it's such a Christian cliche to say, but it's really true. I often just visualize the Lord taking my hand and leading us through this rocky time. It helps!
The other part in these verses that I like is when it says "don't try to get out of anything prematurely". Boy, is that convicting. If I only considered my human nature and desires, I would gladly take an escape hatch right now; however, that is not how I will grow, and would not be part of God's plan. It's been hard and tough, and lately, to be honest, I have wanted to give up, but that is not how I should run this race. I need to do what our wedding verse said (Hebrews 12:1-2) which is to run this race with perseverance keeping our eyes focused on the only place it they should be - on Jesus.
This week is a HUGE week for us. We have been waiting and waiting and waiting for this week. Okay, I have been desperately waiting for September 9th. On September 8th, we will leave Tucson to drive to San Francisco for my doctor's appointment on the 9th. It's at 2pm. Please be praying for this. We have so many questions to get answered in a short amount of time. We have a lot of decisions that need to be made, and we really need a new treatment plan. Please pray that we can bring our doctor quickly up to speed, and that he will know exactly what to do with me. We want to beat this thing, and we desperately need the Lord to give him the wisdom on how to do it with my crazy body. Please also be praying for safe travel and no reactions. It's been a trying month with how my body has freaked out. I seem to be pretty unstable, so we are not sure how well I will tolerate scent filled environments and the long car ride. Also, please be praying that Brian will be blessed with energy to drive for the trip. I am a bit too out of it to help with the driving, and it's always so demanding on him when we go up and back with in 72 hours (it's a 15 hour drive from Tucson). His work has been pretty intense lately, so he is already going into this trip pretty tired.
Well, I need to get to bed. Thanks in advance for your prayers. We'll update when we get back. Through God, we will have the victory!!! Below is a song that has been really encouraging to me. I pray it will bless you also. You will have to hit pause on my blog music player before listening to the song. Enjoy!
Tuesday, August 16, 2011
An Unfortunate Reality Check
Hey folks! I wasn't sure if I would actually be able to type this post or not. It's been really rough to say the least. However, we could use a lot of prayer. Let me give you a brief update.
As you most of you know, I was on a break from antibiotics. At my last phone appointment, my doctor's ND said that I could stay off antibiotics as long as I don't have any symptoms come back. I was cautious, but excited. I did really well for two weeks, but then on Day 15, I started noticing some minor symptoms. It wasn't too terrible, and I wanted to make sure the symptoms weren't caused by something else, so I waited it out. However, by Saturday, I had pretty bad air hunger, some bone/joint pain, numbness and tingling and I was constantly dizzy. So, with all of those symptoms, I was put back on my antibiotic regiment.
Overall, I was disappointed because I wanted to be done with that part of treatment, but at the same time, I had relief that, maybe, things could still improve for the better since I obviously still have some infection in m body. However, what I didn't expect was how hard the antibiotics would hit me after my short break. By the third dose (which I took last night), I was in horrendous pain. I haven't had this type of bone pain since I first started treatment 2 years ago. I could barely walk to the kitchen or bathroom. I also had a lot of breathing issues along with horrible numbness and tingling everywhere in my body. The pressure in my head was extreme, the nausea and dizziness were horrible and my insomnia was back in full force. It was honestly like I had never been on treatment. This lasted all night. I literally did not sleep one minute, and then had to get up at 4:30am to start work at 5am. It was pretty brutal. I am not totally sure what happened. It's hard for me to fathom that during my two week break the bacteria multiplied at warp speeds to send me back to the starting line. I refuse to believe that, but I will fully admit that my mind has gone there a couple of times. I am hoping this is just a bump in the road.
My doctor's ND returned my call this afternoon to give me further instruction about what is happening right now. He said he is shocked after how well I was doing for such a long period of time. He said he has only seen this happen to a couple of people. He said that the Bartonella infection must be very ingrained my system. By taking a two-week break, it allowed the bacteria to "think" it had free reign. Then, when I took the drugs, I had a huge amount of die-off from all the bacteria we killed. My doctor said he wanted me to try and push though, so the next few days should be interesting to say the least. However, it's good to know that we are doing some damage to the little stubborn bugs.
Please just be in prayer for us. This is a pretty big set back for us after being able to experience going to church and living in the "real world" for a period of time. Please pray that my doctors would have wisdom as to what to do next. We need to be able to make headway and have it stay that way even when I am not on antibiotics. Also, please pray for us to have perseverance. At times in the past couple of months, I was doing so well that we were starting to talk about having a family in the future amongst other things. However, it seems like that is getting farther and farther away.
Obviously, we have comfort that our Lord is in control. He knew that I was going to go through this rough patch, and we are resting in the fact that this is all part of God's plan. It's so hard to feel like we are constantly waiting and waiting for my health to change for the positive and stay that way, but ultimately, we need to place all of our desires in the hands of the Lord. He is our ultimate healer. He is the one that will give rest for the weary.
Isaiah 40:31
"But those who trust in the Lord will find new strength. They will soar on wings like eagles. They will run and not grow weary. They will walk and not faint."
As you most of you know, I was on a break from antibiotics. At my last phone appointment, my doctor's ND said that I could stay off antibiotics as long as I don't have any symptoms come back. I was cautious, but excited. I did really well for two weeks, but then on Day 15, I started noticing some minor symptoms. It wasn't too terrible, and I wanted to make sure the symptoms weren't caused by something else, so I waited it out. However, by Saturday, I had pretty bad air hunger, some bone/joint pain, numbness and tingling and I was constantly dizzy. So, with all of those symptoms, I was put back on my antibiotic regiment.
Overall, I was disappointed because I wanted to be done with that part of treatment, but at the same time, I had relief that, maybe, things could still improve for the better since I obviously still have some infection in m body. However, what I didn't expect was how hard the antibiotics would hit me after my short break. By the third dose (which I took last night), I was in horrendous pain. I haven't had this type of bone pain since I first started treatment 2 years ago. I could barely walk to the kitchen or bathroom. I also had a lot of breathing issues along with horrible numbness and tingling everywhere in my body. The pressure in my head was extreme, the nausea and dizziness were horrible and my insomnia was back in full force. It was honestly like I had never been on treatment. This lasted all night. I literally did not sleep one minute, and then had to get up at 4:30am to start work at 5am. It was pretty brutal. I am not totally sure what happened. It's hard for me to fathom that during my two week break the bacteria multiplied at warp speeds to send me back to the starting line. I refuse to believe that, but I will fully admit that my mind has gone there a couple of times. I am hoping this is just a bump in the road.
My doctor's ND returned my call this afternoon to give me further instruction about what is happening right now. He said he is shocked after how well I was doing for such a long period of time. He said he has only seen this happen to a couple of people. He said that the Bartonella infection must be very ingrained my system. By taking a two-week break, it allowed the bacteria to "think" it had free reign. Then, when I took the drugs, I had a huge amount of die-off from all the bacteria we killed. My doctor said he wanted me to try and push though, so the next few days should be interesting to say the least. However, it's good to know that we are doing some damage to the little stubborn bugs.
Please just be in prayer for us. This is a pretty big set back for us after being able to experience going to church and living in the "real world" for a period of time. Please pray that my doctors would have wisdom as to what to do next. We need to be able to make headway and have it stay that way even when I am not on antibiotics. Also, please pray for us to have perseverance. At times in the past couple of months, I was doing so well that we were starting to talk about having a family in the future amongst other things. However, it seems like that is getting farther and farther away.
Obviously, we have comfort that our Lord is in control. He knew that I was going to go through this rough patch, and we are resting in the fact that this is all part of God's plan. It's so hard to feel like we are constantly waiting and waiting for my health to change for the positive and stay that way, but ultimately, we need to place all of our desires in the hands of the Lord. He is our ultimate healer. He is the one that will give rest for the weary.
Isaiah 40:31
"But those who trust in the Lord will find new strength. They will soar on wings like eagles. They will run and not grow weary. They will walk and not faint."
Sunday, August 7, 2011
The Slippery Slope
Hello Everyone! I can't believe August is here. I seriously thought July would never end, lol. Those months that have 5 weeks seem to go on and on forever. I do like August. I will admit that the reason why I like it is because I love the "going back to school" time period each year. Even though God has taken my life in a different direction, I will always be an early childhood teacher at heart. Every time Brian and I go to the store, I gawk at the "back to school" isle. I seriously love buying school supplies. :) Obviously, we don't really have a reason to buy any (even though I have tried hard to think of one) for ourselves, but I was excited to see our local church that we attend (when I can go) asking for them. Whoohoo! I finally get to buy crayons, markers and glue sticks. :) I will seriously look forward to this all week. I am a dork!
I apologize for skipping a week of updates. My job has been crazy. My boss is currently on vacation and she left me in charge of the training program and all of the new employees. That was supposed to be my role, but it ended up being a lot more as I had to step in and fill some of the gaps that were left open since she has been out of the office. Did I mention my boss is the Director of Operations? So, you can only imagine the pressures and work hours! Yes, I pretty much worked from 5am to 9pm at night last week. I would have maybe an hour or two off during the middle of the day, but that was it! I think this made me realize I like being in upper management, but I definitely never want to be the commander in chief. :)
Now, I will talk about the title of this blog post. Have you ever been rock climbing in the rain? :) Brian and I are not the most athletic people. We would not be the ones to go rock climbing, and we are definitely not thrill seekers; however, when we were on our honeymoon in Jamaica we climbed up "Dunn's River Falls". This was actually the waterfall that they used in the scene in the movie titled "Cocktail" with Tom Cruise. We laughed later because if that tourist attraction had been in the US, you would have had to sign a ton of "I will not sue if I die" waivers. :)
It was raining the day we embarked on our adventure, so that made the rocks very slippery. It was hard to find a steady and firm place for your foot. The rocks on the waterfall were so steep that you had to scale up diagonally slowly making your way to the top. There were no handrails and no safety ropes. We all followed our guide single file and during the steep parts you had to hold hands with the person in front and back of you. I had visions of one of us falling and pulling the rest of us down. I think by the time we reached the top (and breathed a sigh of relief), we had all fallen at least twice. Let me tell you, it would have been a long drop to the bottom. It is a great memory, but I am not sure if I would attempt that again.
I think this experience applies to my health journey at this moment. I have been off antibiotics for almost two weeks! It will be two weeks tomorrow. On July 25th, I called my Lyme doctor and told him that every time I took the antibiotics, I had horrible stomach pain. In my opinion, I think 2 years on this stuff has definitely taken it's tole on my poor stomach. Plus, I hadn't really had any Lyme or Bartonella symptoms for about two months. So, I got approval to take a two-week break! Yay! I was ecstatic as I knew that would allow me to add some things back into my diet that I had previously had to remove because of my Candida issue. Before, whenever I took an antibiotic break, I started noticing major cognitive issues starting on about day 4 of my break. However, this time, I have not noticed any. That is a praise!!! We are hoping that it stays this way.
Now, I will get to my own personal slippery slope. Although I haven't dealt with Lyme or Bartonella symptoms, my body has been extremely temperamental. I feel we just begin to get our footings, and then I have another reaction that sets me back awhile. Lately, I have had to try quite a few things, so it's been difficult to know what is setting me off and what isn't. Today, we tried to go to church, but unfortunately, it was not successful. I headed in already set off from something I was exposed to the night before, and we had to leave after 20 minutes. I am still recovering and the hard part is we are not sure if it's the new supplement I started taking yesterday or some make-up I tried to wear. I have struggled with all kinds of unpleasant symptoms all day.
It's times like these that I really wrestle. I hate when an attempt to try something new is unsuccessful. It shakes my confidence in the improvements I have made and also makes me concerned about the next attempt. It also is VERY hard when I have no idea what is setting me off because I can't fix it. It's especially tricky when dealing with a supplement that doesn't necessarily give me an allergic reaction when I swallow the pill, but it sets off my histamine system in general and starts making me allergic to everything or it sets off my autonomic nervous system, and I get a whole host of other icky symptoms. So, you can see the quandary that we are so often in. Currently, my skin is on fire, I have had horrible heart palpitations and my face is itchy. I am also reacting to a lot of my "safe foods". However, I have no idea what the culprit is, and I really need to keep taking this folic acid as I am severely deficient. So, I will just stay the course until it's gets intolerable. I am hoping that my body will calm down soon! Please pray for that.
I had a phone appointment on Thursday with my doctor's ND. He said I can stay off the antibiotics unless I notice symptoms starting to come back. That is awesome for my diet. We are going to try to work on the Candida in the next month. It is SOOOO great to not have to take them right now. However, at the same time, I am concerned about losing ground. I was actually surprised he let me stay off of them indefinitely. Most physicians have you do two weeks on and two weeks off for a bit and then you go down to one week and so on. However, I do love the break! One of the ways my body reacts when the infection starts to take over is I become very allergically sensitive. So, that is probably why we are paying such close attention to all of my reactions lately.
All this to say, in my current state, it's hard to know what's happening. We don't know if I am backsliding, if I am just set off by the make-up or if the new supplement is setting me off. Whatever it is, we need to figure it out soon as I am just miserable. It's also pretty hard emotionally when I have to be so restricted, and we don't why. It's also VERY hard to have had an unsuccessful attempt at going to church. This is something I look forward to every week. It was very disappointing to have to leave this morning. Ironically, the entire service was on healing.
Please be praying for us. We are in a very precarious state right now trying to figure out what my body can handle and what it can't. Some of it is amazing because we are seeing steps of progress and other parts are hard to deal with because we are wondering if these areas will ever fully recover. We are dealing with experiencing a little taste of freedom, and then having to back track into a controlled environment to get my body to calm down and recover. We are also battling the uncertainty of not knowing whether we stopped antibiotics too early and how to recognize an infection set back verses just dealing with residual side effects of having Lyme Disease and Bartonella. Also, please be praying for our emotions. They are up, down and all around. We are exhausted from this journey, and it's hard to think that the chemical sensitivities and extreme allergic reactions are here to stay. We keep hoping that the Lord would grant us a break-through, and sometimes we see glimpses; however, the next week we go back to where we were before. So, it's one emotional roller coaster. Brian probably handles it better than I do as I am a girl. :) Finally, Brian is set to go on a week long business trip in the next couple of weeks. This is not good timing as my body is still pretty messed up, but I'll make it. :) Please just be praying for safety for both of us!
That's all for now! Sorry, this is so long. That's what happens when you don't update for two weeks. :) Talk to you soon!
I apologize for skipping a week of updates. My job has been crazy. My boss is currently on vacation and she left me in charge of the training program and all of the new employees. That was supposed to be my role, but it ended up being a lot more as I had to step in and fill some of the gaps that were left open since she has been out of the office. Did I mention my boss is the Director of Operations? So, you can only imagine the pressures and work hours! Yes, I pretty much worked from 5am to 9pm at night last week. I would have maybe an hour or two off during the middle of the day, but that was it! I think this made me realize I like being in upper management, but I definitely never want to be the commander in chief. :)
Now, I will talk about the title of this blog post. Have you ever been rock climbing in the rain? :) Brian and I are not the most athletic people. We would not be the ones to go rock climbing, and we are definitely not thrill seekers; however, when we were on our honeymoon in Jamaica we climbed up "Dunn's River Falls". This was actually the waterfall that they used in the scene in the movie titled "Cocktail" with Tom Cruise. We laughed later because if that tourist attraction had been in the US, you would have had to sign a ton of "I will not sue if I die" waivers. :)
It was raining the day we embarked on our adventure, so that made the rocks very slippery. It was hard to find a steady and firm place for your foot. The rocks on the waterfall were so steep that you had to scale up diagonally slowly making your way to the top. There were no handrails and no safety ropes. We all followed our guide single file and during the steep parts you had to hold hands with the person in front and back of you. I had visions of one of us falling and pulling the rest of us down. I think by the time we reached the top (and breathed a sigh of relief), we had all fallen at least twice. Let me tell you, it would have been a long drop to the bottom. It is a great memory, but I am not sure if I would attempt that again.
I think this experience applies to my health journey at this moment. I have been off antibiotics for almost two weeks! It will be two weeks tomorrow. On July 25th, I called my Lyme doctor and told him that every time I took the antibiotics, I had horrible stomach pain. In my opinion, I think 2 years on this stuff has definitely taken it's tole on my poor stomach. Plus, I hadn't really had any Lyme or Bartonella symptoms for about two months. So, I got approval to take a two-week break! Yay! I was ecstatic as I knew that would allow me to add some things back into my diet that I had previously had to remove because of my Candida issue. Before, whenever I took an antibiotic break, I started noticing major cognitive issues starting on about day 4 of my break. However, this time, I have not noticed any. That is a praise!!! We are hoping that it stays this way.
Now, I will get to my own personal slippery slope. Although I haven't dealt with Lyme or Bartonella symptoms, my body has been extremely temperamental. I feel we just begin to get our footings, and then I have another reaction that sets me back awhile. Lately, I have had to try quite a few things, so it's been difficult to know what is setting me off and what isn't. Today, we tried to go to church, but unfortunately, it was not successful. I headed in already set off from something I was exposed to the night before, and we had to leave after 20 minutes. I am still recovering and the hard part is we are not sure if it's the new supplement I started taking yesterday or some make-up I tried to wear. I have struggled with all kinds of unpleasant symptoms all day.
It's times like these that I really wrestle. I hate when an attempt to try something new is unsuccessful. It shakes my confidence in the improvements I have made and also makes me concerned about the next attempt. It also is VERY hard when I have no idea what is setting me off because I can't fix it. It's especially tricky when dealing with a supplement that doesn't necessarily give me an allergic reaction when I swallow the pill, but it sets off my histamine system in general and starts making me allergic to everything or it sets off my autonomic nervous system, and I get a whole host of other icky symptoms. So, you can see the quandary that we are so often in. Currently, my skin is on fire, I have had horrible heart palpitations and my face is itchy. I am also reacting to a lot of my "safe foods". However, I have no idea what the culprit is, and I really need to keep taking this folic acid as I am severely deficient. So, I will just stay the course until it's gets intolerable. I am hoping that my body will calm down soon! Please pray for that.
I had a phone appointment on Thursday with my doctor's ND. He said I can stay off the antibiotics unless I notice symptoms starting to come back. That is awesome for my diet. We are going to try to work on the Candida in the next month. It is SOOOO great to not have to take them right now. However, at the same time, I am concerned about losing ground. I was actually surprised he let me stay off of them indefinitely. Most physicians have you do two weeks on and two weeks off for a bit and then you go down to one week and so on. However, I do love the break! One of the ways my body reacts when the infection starts to take over is I become very allergically sensitive. So, that is probably why we are paying such close attention to all of my reactions lately.
All this to say, in my current state, it's hard to know what's happening. We don't know if I am backsliding, if I am just set off by the make-up or if the new supplement is setting me off. Whatever it is, we need to figure it out soon as I am just miserable. It's also pretty hard emotionally when I have to be so restricted, and we don't why. It's also VERY hard to have had an unsuccessful attempt at going to church. This is something I look forward to every week. It was very disappointing to have to leave this morning. Ironically, the entire service was on healing.
Please be praying for us. We are in a very precarious state right now trying to figure out what my body can handle and what it can't. Some of it is amazing because we are seeing steps of progress and other parts are hard to deal with because we are wondering if these areas will ever fully recover. We are dealing with experiencing a little taste of freedom, and then having to back track into a controlled environment to get my body to calm down and recover. We are also battling the uncertainty of not knowing whether we stopped antibiotics too early and how to recognize an infection set back verses just dealing with residual side effects of having Lyme Disease and Bartonella. Also, please be praying for our emotions. They are up, down and all around. We are exhausted from this journey, and it's hard to think that the chemical sensitivities and extreme allergic reactions are here to stay. We keep hoping that the Lord would grant us a break-through, and sometimes we see glimpses; however, the next week we go back to where we were before. So, it's one emotional roller coaster. Brian probably handles it better than I do as I am a girl. :) Finally, Brian is set to go on a week long business trip in the next couple of weeks. This is not good timing as my body is still pretty messed up, but I'll make it. :) Please just be praying for safety for both of us!
That's all for now! Sorry, this is so long. That's what happens when you don't update for two weeks. :) Talk to you soon!
Saturday, July 23, 2011
Long Overdue :)
Hey Everyone! Sorry it's been so long since I have posted. It's been a rough couple of weeks, and I just haven't had the energy or the brain-power. :) However, this post is long overdue, so here it goes.
I am almost done with my graduate class. We have a virtual meeting with our professor on Tuesday evening, and then I have to finish a couple of reviews of my group members. After that I will be DONE! I can't believe it! I will actually have a master's degree! It's exciting! :) All of thus work has truly paid off. There were so many times I just wanted to throw in the towel as I was trying to do treatment at the same time as all of my grad work, but I persevered and now I will have a degree to show for it. Yay! :)
Okay, now for the health update which not been as pleasant. Let me start off by telling you about the week of the 10th. That was the first week I went to church. I wrote a blog post after that experience. It was so wonderful! However, after that experience, a new adventure began. We are not sure what is the cause as we had so many things happen that it's hard to know what came first-the chicken or the egg.
The Monday after we went to church, I had a HORRIBLE reaction to turkey. It took 3 days before my stomach recovered. My guess is the turkey that we tried has some kind of added solution to it that I must have been severely allergic to. At the same time, my job ramped up and I started having to work about 12 to 13 hours a day. Let me tell you, it has not been stress free. I still love training the new hires (virtually of course), but the stress has not been great on my body. We are ramping up for a new tutoring program which is why there is such an increase in new employees. So hopefully, in the next few weeks, it will slow down. Brian and I have had a lot of talks about life-work balance as I have literally had to be glued to my computer. Starting a new position is never easy, but add in health issues, and it's one major challenge.
After my turkey episode, we went straight into the puppy adventure. July 15th was supposed to be puppy day. However, we got a message from the breeder on the 12th that our puppy would be flying into Phoenix on the 13th because of the heat index that coming Friday. We were definitely not ready, but really had not choice. Brian left after work to go get him. This was not great timing in so many ways. Brian's work has been crazy and mine has been too. However, what can ya do?! It was out of our hands.
After Brian got to Phoenix, his car wouldn't start. He was at Delta Cargo, in extremely hot weather with a new puppy-probably not on his top 10 list of best experiences, lol. Thankfully, God provided an amazing airport mechanic who got Brian's car started so that we didn't have to have it towed. We prayed him all the way home, and he made it barely. Yay God! We took the car in the next day, and after a $1100 we got it back. Talk about a hit to the budget! Car repairs are never convenient.
To be honest, I was pretty nervous about getting the puppy. I guess I just had a gut feeling that it wasn't going to work, but I plowed ahead since I didn't want fear to stop me. Well, we got the puppy home, and within 2 hours I was SOOOO sick. I was covered in hives which is a new thing for me. Most of the time, I only get a blotchy red rash on my shoulders and chest; however, this time it was from head to toe. I started reacting to all of my foods which was not surprising since the dog was setting me off so bad. The strange thing is I am not allergic to our current dog Toby. I have never been allergic to dogs. Toby sleeps on my bed, and I am around him all the time. So, my reaction to this puppy was baffling. We thought maybe he was exposed to something before we got him, so we gave him a bath. However, that didn't help at all.
My reactions got so bad that I couldn't even be within 10 feet of him. Brian had to stay home the next day because I was so unstable, and he ended up having to go back to Phoenix the following day to fly the puppy back to the breeder. It was such a stressful 36 hours. After he got home, he had to basically deep clean the entire house (or at least wherever the puppy walked) before I was able to re-enter the land of the living. :P I am telling you....I have such an AMAZING husband. We have been at this a long time, and when I am exposed to something that makes me dangerously ill, he just flips into action. By this time, he knows what needs to be done as far as how to clean and basically decontaminate the house. He does it without being asked and without a complaint-one incredible man!
Although we were told the dog was the same breed as Toby, he just didn't look right. His hair and body structure were completely different. We actually feel pretty strongly that the Mother or Father was probably not a pure bred like we were told. However, it's still strange that I had such a bad reaction to it. Since I got ill about 7 years ago, I have been around a TON of dogs. I have never reacted like this. The other factor that probably did play a roll in my intense allergic reaction was the fact that my body was already very set off because of the stress I have been under at work. Stress and the histamine system are not a good combination especially in my body. It always seems that my allergic reactions get so much worse. So, it's not a total surprise that I reacted so adversely. My reaction was so bad that it actually wasn't that hard to get rid of the puppy emotionally. He was cute, and I was a little sad, but I don't know how we would have survived the last week if he would have been here with our schedules and also with my allergies. So, I can see God's hand in it even though it has been less than pleasant.
After all of these events, it's been hard for my body to recover. My autonomic nervous system has pretty much thrown a temper tantrum. We have realized that although I have made a lot of progress in the infection area, my body has not gotten to the point where it can handle a lot of outside stress which includes exposure to a ton of allergens and also just physical or emotional stress. We have learned that stability is the key, and if the boat gets rocked, it's hard to come back.
So, as I write this, I am still experiencing a lot of unpleasant side effects. I am pretty tired, and I have a had a lot of flushing and random allergic reactions. I have also had a lot of tachycardia episodes along with nausea and dizziness. If I take Ativan, everything goes away as it calms down my autonomic nervous system; however, Ativan has a short half-life and there are also unpleasant side effects with that drug. I am sure things will eventually calm down, but it will take time. I am not a naturally patient person, so it's hard for me to wait it out especially after how well I have been feeling the last couple of months.
Emotionally, it's been a little discouraging for us. It's hard to think I have gone backwards, so we are just holding onto hope that this was just a blip caused by outside factors. It's also hard to know what has made me so sick. We are leaning towards NOT thinking it was due to the fact we started going to church. There were too many outside factors that could have sent my body over the edge. So, we will still continue to press on as far as attending when I feel well enough to go. It's also a little difficult to go back into an isolated state after experiencing a taste of the world. There is something about the taste of freedom that makes you yearn for more. To be able to attend church was like the doors were finally opening to our small confined world. So, it's been a little difficult to have to put up the barriers of protection again even if it's only for a small amount of time.
Finally, it's been hard to realize that maybe my body isn't as stable as we thought it was. Awhile back, we had a physician talk to us about how there might be some residual effects of the damage from Lyme Disease. We have been praying and hoping that will not be the case, but after experiencing what we experienced the last couple of weeks, it's looking like there might be some unpleasant symptoms that might be here to stay for the long haul. My autonomic nervous system seems to be trigger happy. There really isn't a drug that can fix that. Yes, getting the infections under control will reduce the burden on that system; however, this might be something I have to be careful of the rest of my life. It's sad because it effects so much as far as what I can tolerate, but it might be our reality. Obviously, we are still holding out hope that it's not because we believe that God can fully heal this area, but at the same time, we have had to come to the realization that this might be an ongoing battle.
Well, I think I have gone on long enough. Please be praying that my body will bounce back quickly from the events of the last couple of weeks. I am pretty miserable, and it seems like the recovery process is at a snail pace. Please also be praying that God would give us wisdom in how far we can push my body. It seems like it's such a balancing act, and we have definitely not mastered it yet. Please also pray for continued strength and encouragement. It's never easy to deal with setbacks or bumps; however, we know we are not on this journey alone. Thanks for your continued support and prayers!
I am almost done with my graduate class. We have a virtual meeting with our professor on Tuesday evening, and then I have to finish a couple of reviews of my group members. After that I will be DONE! I can't believe it! I will actually have a master's degree! It's exciting! :) All of thus work has truly paid off. There were so many times I just wanted to throw in the towel as I was trying to do treatment at the same time as all of my grad work, but I persevered and now I will have a degree to show for it. Yay! :)
Okay, now for the health update which not been as pleasant. Let me start off by telling you about the week of the 10th. That was the first week I went to church. I wrote a blog post after that experience. It was so wonderful! However, after that experience, a new adventure began. We are not sure what is the cause as we had so many things happen that it's hard to know what came first-the chicken or the egg.
The Monday after we went to church, I had a HORRIBLE reaction to turkey. It took 3 days before my stomach recovered. My guess is the turkey that we tried has some kind of added solution to it that I must have been severely allergic to. At the same time, my job ramped up and I started having to work about 12 to 13 hours a day. Let me tell you, it has not been stress free. I still love training the new hires (virtually of course), but the stress has not been great on my body. We are ramping up for a new tutoring program which is why there is such an increase in new employees. So hopefully, in the next few weeks, it will slow down. Brian and I have had a lot of talks about life-work balance as I have literally had to be glued to my computer. Starting a new position is never easy, but add in health issues, and it's one major challenge.
After my turkey episode, we went straight into the puppy adventure. July 15th was supposed to be puppy day. However, we got a message from the breeder on the 12th that our puppy would be flying into Phoenix on the 13th because of the heat index that coming Friday. We were definitely not ready, but really had not choice. Brian left after work to go get him. This was not great timing in so many ways. Brian's work has been crazy and mine has been too. However, what can ya do?! It was out of our hands.
After Brian got to Phoenix, his car wouldn't start. He was at Delta Cargo, in extremely hot weather with a new puppy-probably not on his top 10 list of best experiences, lol. Thankfully, God provided an amazing airport mechanic who got Brian's car started so that we didn't have to have it towed. We prayed him all the way home, and he made it barely. Yay God! We took the car in the next day, and after a $1100 we got it back. Talk about a hit to the budget! Car repairs are never convenient.
To be honest, I was pretty nervous about getting the puppy. I guess I just had a gut feeling that it wasn't going to work, but I plowed ahead since I didn't want fear to stop me. Well, we got the puppy home, and within 2 hours I was SOOOO sick. I was covered in hives which is a new thing for me. Most of the time, I only get a blotchy red rash on my shoulders and chest; however, this time it was from head to toe. I started reacting to all of my foods which was not surprising since the dog was setting me off so bad. The strange thing is I am not allergic to our current dog Toby. I have never been allergic to dogs. Toby sleeps on my bed, and I am around him all the time. So, my reaction to this puppy was baffling. We thought maybe he was exposed to something before we got him, so we gave him a bath. However, that didn't help at all.
My reactions got so bad that I couldn't even be within 10 feet of him. Brian had to stay home the next day because I was so unstable, and he ended up having to go back to Phoenix the following day to fly the puppy back to the breeder. It was such a stressful 36 hours. After he got home, he had to basically deep clean the entire house (or at least wherever the puppy walked) before I was able to re-enter the land of the living. :P I am telling you....I have such an AMAZING husband. We have been at this a long time, and when I am exposed to something that makes me dangerously ill, he just flips into action. By this time, he knows what needs to be done as far as how to clean and basically decontaminate the house. He does it without being asked and without a complaint-one incredible man!
Although we were told the dog was the same breed as Toby, he just didn't look right. His hair and body structure were completely different. We actually feel pretty strongly that the Mother or Father was probably not a pure bred like we were told. However, it's still strange that I had such a bad reaction to it. Since I got ill about 7 years ago, I have been around a TON of dogs. I have never reacted like this. The other factor that probably did play a roll in my intense allergic reaction was the fact that my body was already very set off because of the stress I have been under at work. Stress and the histamine system are not a good combination especially in my body. It always seems that my allergic reactions get so much worse. So, it's not a total surprise that I reacted so adversely. My reaction was so bad that it actually wasn't that hard to get rid of the puppy emotionally. He was cute, and I was a little sad, but I don't know how we would have survived the last week if he would have been here with our schedules and also with my allergies. So, I can see God's hand in it even though it has been less than pleasant.
After all of these events, it's been hard for my body to recover. My autonomic nervous system has pretty much thrown a temper tantrum. We have realized that although I have made a lot of progress in the infection area, my body has not gotten to the point where it can handle a lot of outside stress which includes exposure to a ton of allergens and also just physical or emotional stress. We have learned that stability is the key, and if the boat gets rocked, it's hard to come back.
So, as I write this, I am still experiencing a lot of unpleasant side effects. I am pretty tired, and I have a had a lot of flushing and random allergic reactions. I have also had a lot of tachycardia episodes along with nausea and dizziness. If I take Ativan, everything goes away as it calms down my autonomic nervous system; however, Ativan has a short half-life and there are also unpleasant side effects with that drug. I am sure things will eventually calm down, but it will take time. I am not a naturally patient person, so it's hard for me to wait it out especially after how well I have been feeling the last couple of months.
Emotionally, it's been a little discouraging for us. It's hard to think I have gone backwards, so we are just holding onto hope that this was just a blip caused by outside factors. It's also hard to know what has made me so sick. We are leaning towards NOT thinking it was due to the fact we started going to church. There were too many outside factors that could have sent my body over the edge. So, we will still continue to press on as far as attending when I feel well enough to go. It's also a little difficult to go back into an isolated state after experiencing a taste of the world. There is something about the taste of freedom that makes you yearn for more. To be able to attend church was like the doors were finally opening to our small confined world. So, it's been a little difficult to have to put up the barriers of protection again even if it's only for a small amount of time.
Finally, it's been hard to realize that maybe my body isn't as stable as we thought it was. Awhile back, we had a physician talk to us about how there might be some residual effects of the damage from Lyme Disease. We have been praying and hoping that will not be the case, but after experiencing what we experienced the last couple of weeks, it's looking like there might be some unpleasant symptoms that might be here to stay for the long haul. My autonomic nervous system seems to be trigger happy. There really isn't a drug that can fix that. Yes, getting the infections under control will reduce the burden on that system; however, this might be something I have to be careful of the rest of my life. It's sad because it effects so much as far as what I can tolerate, but it might be our reality. Obviously, we are still holding out hope that it's not because we believe that God can fully heal this area, but at the same time, we have had to come to the realization that this might be an ongoing battle.
Well, I think I have gone on long enough. Please be praying that my body will bounce back quickly from the events of the last couple of weeks. I am pretty miserable, and it seems like the recovery process is at a snail pace. Please also be praying that God would give us wisdom in how far we can push my body. It seems like it's such a balancing act, and we have definitely not mastered it yet. Please also pray for continued strength and encouragement. It's never easy to deal with setbacks or bumps; however, we know we are not on this journey alone. Thanks for your continued support and prayers!
Sunday, July 10, 2011
Re-Entry :)
Hello! I have a huge graduate assignment to work on, but as you can see, I would rather write a blog post. :) These are much more fun! I actually turned in my graduate portfolio last week. I should hear back within a week to see if I need to make any changes. I have one huge assignment left for my graduate degree. I thought I was going to have to do 3, but my professor changed our syllabus! I was shocked, and so relieved as the other 2 assignments were going to be awful. I am so excited to be done! I can't believe that I made it through Lyme treatment and came out with a graduate degree on the other side! :)
Brian's CPA exam on Friday went good. He said it was hard. He also stated that there really isn't a way to tell if he passed or not. I am sure he did though. The way they calculate the final score is by measuring you against the other people who took the test at the same time. So, it's impossible to know whether you answered enough questions to get a passing grade since you don't know how the others did. We should find out in about 6 to 8 weeks. Brian's good at waiting, but I am not. :)
Well, big news for today.....We went to church!!!!! We attended for the first time in 5 years. I can't put into words how wonderful it was to worship in a corporate setting. I successfully stayed in the building the whole time. God is so good! We have been waiting so long for this moment. My health has improved quite a bit. I wouldn't say I am functioning at 100%, but for now, it's at a point where I can push through when I don't feel great. I didn't have any reactions while I was there, but I haven't felt the greatest since I've been home. I can tell it taxed my system, but it was SO worth it. We will continue to try to attend regularly unless it causes me to backslide too much. We praise the Lord for this step! It means the world to us. The church service was amazing, and we are really looking forward to the time where Brian can get back into playing on a worship team, and I can start helping out with the children's ministry and/or attend a women's bible study. All in God's timing!
I named the title of this post "Re-entry" because I think this is something that people don't often think about when someone has been ill for so long. However, it's something very real especially when you have had to deal with such a long-term isolating illness. As I was standing in the sanctuary today, it was a surreal experience. I looked around me and saw everyone worshiping. It was so great to be able to participate for the first time in so long. However, at the same time, it was a little difficult to be out and about like nothing happened. We walked into church where we hardly knew anyone, and with us, we carry remnants of the battle we have fought for the last 5 years. Personally, I have always been a VERY outgoing person. Anyone who knows me knows that I am usually the first one to go up and talk to new people, and I love interacting with everyone. However, as I stood there this morning, I found myself wanting to hang back, not really wanting anyone to notice me and actually being a little shy. I was kind of shocked because this is SO not my natural personality.
Many people who suffer long-term illnesses, especially those with Lyme Disease who have usually gone years being ill without a diagnosis, go through an adjustment period when they re-enter the world. Some say it's almost like PTSD (Post Traumatic Stress Disorder). I would have to agree. Before we treated for Bartonella, I had horrible anxiety when I went places. Now that we have that infection in my brain under control, my re-entry issue is more shyness than anything. I know that's not a bad thing, but I think it bothers me because I know it's not me! I am not a naturally shy person. I am sure things will get better with time. I think it was just a shock to see my reaction.
Another area that I struggle a bit when thinking about re-entry is celebrating the positive steps forward when you have been through so much trauma. I know that seems like a no-brainer, but it's actually quite difficult. For years, it seemed like we had disappointment after disappointment and trial after trial. Now, I am always looking behind me wondering if this might just be a glimpse of positive change instead of a permanent change. I guess I just expect that things will go backwards. I know that is not necessarily what will happen, and that is not faith. However, that is how I protect my heart from disappointment when and if the other shoe does drop. I know that should not be my attitude. Brian keeps me accountable when I start second guessing our gains. :) Again, I think it will just take time to heal.
I am not saying I am not thrilled and excited about this giant break-through. Boy, I am. I just want to be honest about the emotions that I am going through as I re-enter after being isolated for so long. I pray with all my heart that this is permanent and that things will just keep improving. God, can and is able to do it! We have the Great Physician working on our team, and it's our hope and prayer that in a few months I can report that I am regularly attending a women's bible study along with participating in other ministries. We are taking things slow to see what my body can handle, but we are celebrating each step forward which is definitely a gift from above.
So, as we take these baby steps and our world opens up, please be praying for us. Pray for emotional healing along with continued physical healing. Please also pray that our successes will continue. We are so excited to think that this may be the start of us being out in the world again! Blessings to you my friends!
Brian's CPA exam on Friday went good. He said it was hard. He also stated that there really isn't a way to tell if he passed or not. I am sure he did though. The way they calculate the final score is by measuring you against the other people who took the test at the same time. So, it's impossible to know whether you answered enough questions to get a passing grade since you don't know how the others did. We should find out in about 6 to 8 weeks. Brian's good at waiting, but I am not. :)
Well, big news for today.....We went to church!!!!! We attended for the first time in 5 years. I can't put into words how wonderful it was to worship in a corporate setting. I successfully stayed in the building the whole time. God is so good! We have been waiting so long for this moment. My health has improved quite a bit. I wouldn't say I am functioning at 100%, but for now, it's at a point where I can push through when I don't feel great. I didn't have any reactions while I was there, but I haven't felt the greatest since I've been home. I can tell it taxed my system, but it was SO worth it. We will continue to try to attend regularly unless it causes me to backslide too much. We praise the Lord for this step! It means the world to us. The church service was amazing, and we are really looking forward to the time where Brian can get back into playing on a worship team, and I can start helping out with the children's ministry and/or attend a women's bible study. All in God's timing!
I named the title of this post "Re-entry" because I think this is something that people don't often think about when someone has been ill for so long. However, it's something very real especially when you have had to deal with such a long-term isolating illness. As I was standing in the sanctuary today, it was a surreal experience. I looked around me and saw everyone worshiping. It was so great to be able to participate for the first time in so long. However, at the same time, it was a little difficult to be out and about like nothing happened. We walked into church where we hardly knew anyone, and with us, we carry remnants of the battle we have fought for the last 5 years. Personally, I have always been a VERY outgoing person. Anyone who knows me knows that I am usually the first one to go up and talk to new people, and I love interacting with everyone. However, as I stood there this morning, I found myself wanting to hang back, not really wanting anyone to notice me and actually being a little shy. I was kind of shocked because this is SO not my natural personality.
Many people who suffer long-term illnesses, especially those with Lyme Disease who have usually gone years being ill without a diagnosis, go through an adjustment period when they re-enter the world. Some say it's almost like PTSD (Post Traumatic Stress Disorder). I would have to agree. Before we treated for Bartonella, I had horrible anxiety when I went places. Now that we have that infection in my brain under control, my re-entry issue is more shyness than anything. I know that's not a bad thing, but I think it bothers me because I know it's not me! I am not a naturally shy person. I am sure things will get better with time. I think it was just a shock to see my reaction.
Another area that I struggle a bit when thinking about re-entry is celebrating the positive steps forward when you have been through so much trauma. I know that seems like a no-brainer, but it's actually quite difficult. For years, it seemed like we had disappointment after disappointment and trial after trial. Now, I am always looking behind me wondering if this might just be a glimpse of positive change instead of a permanent change. I guess I just expect that things will go backwards. I know that is not necessarily what will happen, and that is not faith. However, that is how I protect my heart from disappointment when and if the other shoe does drop. I know that should not be my attitude. Brian keeps me accountable when I start second guessing our gains. :) Again, I think it will just take time to heal.
I am not saying I am not thrilled and excited about this giant break-through. Boy, I am. I just want to be honest about the emotions that I am going through as I re-enter after being isolated for so long. I pray with all my heart that this is permanent and that things will just keep improving. God, can and is able to do it! We have the Great Physician working on our team, and it's our hope and prayer that in a few months I can report that I am regularly attending a women's bible study along with participating in other ministries. We are taking things slow to see what my body can handle, but we are celebrating each step forward which is definitely a gift from above.
So, as we take these baby steps and our world opens up, please be praying for us. Pray for emotional healing along with continued physical healing. Please also pray that our successes will continue. We are so excited to think that this may be the start of us being out in the world again! Blessings to you my friends!
Friday, July 1, 2011
What a week!
Hey folks. I don't have a lot of time to write, but I wanted to let you know that we are still doing well. I have been really busy with work and training. I LOVE it; however, it does make for long days. I get up at 4:30am and then work a tutoring shift from 5 to 8am. Then I usually train 1 or 2 students and then tutor from 2 to 5pm. After that, I either have had to train again or I have had to have a group meeting (virtually of course) for my graduate course. I can not tell you how CHALLENGING this last grad course is. My group members and I were talking, and we are definitely glad we took this course at the end of our track. If we had taken it in the beginning, I think all of us would have quit or changed our major! :P
So, my schedule is crazy, but I am loving it. It's just so nice to have more responsibility and to be able to do what I love! Brian is studying so hard for the last section of the CPA exam. His birthday was on Wednesday! Happy 31st Birthday Brian! :) Unfortunately, he is T minus 7 days until the big exam, so he ordered a pizza (for his birthday treat) and studied the night away. Poor guy! He will be so glad when July 8th rolls around and it's over. Then, we will play the waiting game to see if he passed (which I am sure he will).
Jackson also arrives on July 8th! It's going to be an insane couple of weeks until my grad class is done. July 31st can't get here fast enough! We are excited to get the little guy though. I have been waiting with anticipation all week! I hope these next 7 days go by fast, but Brian doesn't because he wants more time to study. :) Please be praying for Brian's test. This is a really hard one and for his sake, he really needs to pass it on the first time. I have all the confidence he will, but he still has a lot to review before next Friday!
I have a phone appointment with my doctor's naturopathic on July 7th. It's a time where I can inform him of all the meds and supplements I have tried and can't tolerate, and he can tell me to try more. :) Always fun on the pocketbook, lol. He does usually have some good ideas. I think I have actually stabilized. I am really hungry all the time which that isn't fun. However, that has more to do with my diet than anything. I am still tired, and the Candida is still present, but the stuff I am doing to counteract it is working. At least, it enables me to eat carbs and fruit a couple of times a week and also helps me have enough energy to get through the day. We would appreciate prayers for total healing. I would love to not have to battle this at the same time as treatment.
Well, that's it for today. Not much to report. Still thankful for all that God is doing and has blessed us with especially in the last couple of weeks. He is good! All the time! :)
So, my schedule is crazy, but I am loving it. It's just so nice to have more responsibility and to be able to do what I love! Brian is studying so hard for the last section of the CPA exam. His birthday was on Wednesday! Happy 31st Birthday Brian! :) Unfortunately, he is T minus 7 days until the big exam, so he ordered a pizza (for his birthday treat) and studied the night away. Poor guy! He will be so glad when July 8th rolls around and it's over. Then, we will play the waiting game to see if he passed (which I am sure he will).
Jackson also arrives on July 8th! It's going to be an insane couple of weeks until my grad class is done. July 31st can't get here fast enough! We are excited to get the little guy though. I have been waiting with anticipation all week! I hope these next 7 days go by fast, but Brian doesn't because he wants more time to study. :) Please be praying for Brian's test. This is a really hard one and for his sake, he really needs to pass it on the first time. I have all the confidence he will, but he still has a lot to review before next Friday!
I have a phone appointment with my doctor's naturopathic on July 7th. It's a time where I can inform him of all the meds and supplements I have tried and can't tolerate, and he can tell me to try more. :) Always fun on the pocketbook, lol. He does usually have some good ideas. I think I have actually stabilized. I am really hungry all the time which that isn't fun. However, that has more to do with my diet than anything. I am still tired, and the Candida is still present, but the stuff I am doing to counteract it is working. At least, it enables me to eat carbs and fruit a couple of times a week and also helps me have enough energy to get through the day. We would appreciate prayers for total healing. I would love to not have to battle this at the same time as treatment.
Well, that's it for today. Not much to report. Still thankful for all that God is doing and has blessed us with especially in the last couple of weeks. He is good! All the time! :)
Friday, June 24, 2011
Amazing Changes! :)
Hello Everyone! Well, I thought we have had enough happen this week that it was time to write a post. Of course, it's 1:15am in the morning, and I can't sleep, but I don't mind. I can catch up tomorrow. Overall, I am sleeping better. It seems like if I have stuff that goes late into the evening (online grad school meetings or work obligations) that is when my insomnia kicks in. Usually, once a week I only get two or three hours of sleep before I have to get up for work at 4:30am. However, my schedule allows me to catch up during the day, so it's not too bad. I am just thankful for the other six nights that allow me to sleep like a normal person! :)
The third piece of news is that my work has promoted me to trainer. This is not a full-time position, and probably won't even be a part-time position, but when they hire new people, I now get to train them. I can't tell you how exciting this is for me. This is what I LOVE to do. Teaching is my passion. I used to think I only liked teaching little kids, but I actually really enjoy corporate training. It's challenging and yet so rewarding. I started working with my first trainee tonight, and it brought so much joy to my heart. To have the opportunity to help others succeed is such a blessing. I will still be tutoring in the mornings and afternoons, but I will train the new employees as they are hired. Also, for awhile now, I have been trying to switch tutoring programs for my afternoon shift because of the lack of students. I found out today that it is in the works, and hopefully, I should be able to switch in the next week. Please pray for that! My current tutoring program has to release me so I can change. My manager is working on it, but we aren't sure if it will happen without some major finagling.
The first piece of big news is that on Monday, Brian received a HUGE promotion. He will now be a Senior Accountant at his CPA firm. His manager said that he was the first person in the history of his company to be promoted to that position after only 1 1/2 years. Yay!!! Have I mentioned how amazing he is???!!!!! :) Words can not describe how proud I am of him! He works so hard, and God has blessed him abundantly with this wonderful gift. His review went amazing, and they were so impressed that Brian will be done with the CPA exam by Christmas. That is Brian's goal, and he is working hard to complete it. They wanted him to be finished by December 2012, but Brian will finish one year ahead of time. That's Brian for you! He sets a goal and always accomplishes it. They are so impressed by his ambitions, work ethic and talents. I know he will be AMAZING at this new position.
The second piece of news is that we found out that Brian passed the third section of the CPA exam!!!! Yay!!! Only one more section to go! :) That is so exciting. He is set to take the last section on July 8th. Please be praying for this. It's the hardest section of the exam. He still has a lot of studying to do in the next two weeks. Please pray that God would give him clarity of mind, and that He would multiply his time!
The third piece of news is that my work has promoted me to trainer. This is not a full-time position, and probably won't even be a part-time position, but when they hire new people, I now get to train them. I can't tell you how exciting this is for me. This is what I LOVE to do. Teaching is my passion. I used to think I only liked teaching little kids, but I actually really enjoy corporate training. It's challenging and yet so rewarding. I started working with my first trainee tonight, and it brought so much joy to my heart. To have the opportunity to help others succeed is such a blessing. I will still be tutoring in the mornings and afternoons, but I will train the new employees as they are hired. Also, for awhile now, I have been trying to switch tutoring programs for my afternoon shift because of the lack of students. I found out today that it is in the works, and hopefully, I should be able to switch in the next week. Please pray for that! My current tutoring program has to release me so I can change. My manager is working on it, but we aren't sure if it will happen without some major finagling.
Health-wise, I am doing better. I think we are finally getting the Candida under control. I have lost a lot of weight, but I don't mind. :) I have learned I can't cheat on the diet though. I have to be very careful to only have fruit once or twice a week, and mainly stick to vegetables, meat and a little bit of yogurt. I have been able to have a little bit of carbs in the form of brown rice, but I have to be careful with that too. Thankfully, the fatigue is SOOOO much better!
I have been successfully taking the full dose of Rifampin for 2 weeks now! Yay! I am getting some herx-like reactions, but they are minor compared to what I used to get. As long as I make sure to detox, I am okay. Which brings me to my next prayer request. We are still trying to find a replacement for the current detox supplement that I am taking. It's very vital that we find something that works in order to keep my symptoms under control. I am going to be ordering something that was recommended by my doctor tomorrow. However, it has a few ingredients that are pretty strange, and I am not sure how well I will tolerate it.
We are actually going to try going to church one week from Sunday. I have to train some students who live on the East Coast for work this Sunday. Unfortunately, because of the time difference, it will run right into the time we would be at church. So, we had to push the date out. To be honest, I am quite nervous to go. It's been a VERY long time since we have tried to do this. For about a month now, I have been going grocery shopping with Brian very successfully. However, that is a situation where I don't have to stay in one place for a really long time. My chemical sensitivities are still present, so we don't know how I will react. However, we still want to try! Please be praying for this! It would be such a blessing to be able to worship with other believers and to once again get some Christian fellowship. I don't expect to be symptom free, but I am praying and hoping that the symptoms that come are ones I can push through!
The last piece of news i
s a fun one! In August, I will be graduating with my master's degree. When I was battling the intense IV therapy and also trying to complete my graduate work, my parents decided to bless me with a goal/gift. They said that they would buy us a second puppy as they know I have wanted one for awhile. He will be the same breed as Toby, a Cavachon ~ hypoallergenic and non-shedding. I am not sure why I am not allergic to dogs when the rest of the world makes me react, lol. However, I have to say that I am SO thankful! I have included a picture on the left. He is SO cute! :) His name will be Jackson. We will get him on July 8th as he is flying in from Iowa! :) I am ecstatic. These little guys are so much fun and bring a lot of joy into our house amongst all the health and life stuff.
s a fun one! In August, I will be graduating with my master's degree. When I was battling the intense IV therapy and also trying to complete my graduate work, my parents decided to bless me with a goal/gift. They said that they would buy us a second puppy as they know I have wanted one for awhile. He will be the same breed as Toby, a Cavachon ~ hypoallergenic and non-shedding. I am not sure why I am not allergic to dogs when the rest of the world makes me react, lol. However, I have to say that I am SO thankful! I have included a picture on the left. He is SO cute! :) His name will be Jackson. We will get him on July 8th as he is flying in from Iowa! :) I am ecstatic. These little guys are so much fun and bring a lot of joy into our house amongst all the health and life stuff.Well, that's all for now! I have to say I really like this post because there are so many positives. It's nice to be able to celebrate for once! :) We serve an incredible God, and we are so thankful for all that is doing in our lives. I hope you have a wonderful weekend! July is almost here! :)
Thursday, June 16, 2011
On the Mend
Hello Folks! Well, I think the meds are finally starting to work on the Candida. I am adding another one hopefully by Saturday that will help me improve also. I have realized that my problems are directly related to Candida which is a big relief to me! It's great to still see all the progress I have made. It will be a tricky balancing act with the antibiotics I still must take, but God can do it. In the last day or so, I have been able to add back in a few carbs here and there which make such a difference in my energy level. I am sleeping a ton better too which has done wonders!
All of this is such an emotional roller coaster ride. One day things look up, and the next day you are climbing the big hill before the drop off trying to overcome another obstacle. However, I guess that is life right?!! What has helped me a lot in the last couple of days is to remember where I was two years ago, and now look where I am at. I have come so far. The next mile stone come August or September is to start the taper down process of the antibiotics to see what will happen if I am not taking them. Also, if we can just get my chemical sensitivities under control so I can work out of my home and attend church regularly, we would be set! :) Please be praying for this! We are doing acupuncture treatments which we feel strongly are helping my body learn to detox naturally. We need this to happen so I don't soak up chemicals in the environment like a sponge which is the reason I react so easily.
This leads me to my next prayer request. For awhile now, I have some issues with my current company and their reliability with pay and consistent work. I have also had a lot of trouble with upper management not responding to my e-mails or phone calls. I think I have been consistently trying to contact them for 3 1/2 weeks and have received no reply. In April, I trained for another English tutoring program, and it looked like things were improving. My schedule was full, and I was finally earning what I needed to be earning and loving it! However, with the recent series of events, I am about 95% sure they are canceling this program. There is a mandatory meeting for all phone tutors in Michigan on Saturday. This, of course, leaves me out of the picture since I live too far away to attend. The e-mail message stated that they wanted to discuss the recent events that have led to the "reorganization of the company". Hmm....anyone in the business world knows what that means! :P It drives me crazy how Korean clients pull their contracts from our company. From my observations, my guess would be it's a quality control issue with our tutors. There is absolutely no professional development or performance feedback, and the training is pretty terrible. After working on my graduate degree, and learning to analyze these kinds of problems and knowing what it would take to fix them, it's hard for me not to say anything.
So, I am back to looking very hard for a new job. I am considering going back to my former place of employment, Alpine Access. The pay won't be great, but at least it will be steady and reliable income. Plus, I would have the opportunity for advancement into a supervisor or training position in the future. The latter is something I am definitely qualified for with my graduate degree and something I would LOVE to be doing again. So, if you could be praying that God would open up a door and that they would be willing to take me back, I would appreciate it! Actually, just be praying that God would open up a door at any company that would be a good fit for me. I would love to be able to use my graduate degree, but if I have to start back in the customer service field and work my way up, I will do it so that our family can make ends meet!
6/17/11 - Update - Well, Alpine Access is a no go. It looks like even though I worked for them awhile ago, I am not elligible for rehire. My guess it has to do with the amount of absences I had before I left because of Lyme Disease. It obviously wasn't God's will, but it's a little hard to swallow because I have always been a good employee. Please keep praying that God will provide a job for me. Thanks!
Well, I need to go take some meds. Thanks for praying friends! I will keep you posted! :)
All of this is such an emotional roller coaster ride. One day things look up, and the next day you are climbing the big hill before the drop off trying to overcome another obstacle. However, I guess that is life right?!! What has helped me a lot in the last couple of days is to remember where I was two years ago, and now look where I am at. I have come so far. The next mile stone come August or September is to start the taper down process of the antibiotics to see what will happen if I am not taking them. Also, if we can just get my chemical sensitivities under control so I can work out of my home and attend church regularly, we would be set! :) Please be praying for this! We are doing acupuncture treatments which we feel strongly are helping my body learn to detox naturally. We need this to happen so I don't soak up chemicals in the environment like a sponge which is the reason I react so easily.
This leads me to my next prayer request. For awhile now, I have some issues with my current company and their reliability with pay and consistent work. I have also had a lot of trouble with upper management not responding to my e-mails or phone calls. I think I have been consistently trying to contact them for 3 1/2 weeks and have received no reply. In April, I trained for another English tutoring program, and it looked like things were improving. My schedule was full, and I was finally earning what I needed to be earning and loving it! However, with the recent series of events, I am about 95% sure they are canceling this program. There is a mandatory meeting for all phone tutors in Michigan on Saturday. This, of course, leaves me out of the picture since I live too far away to attend. The e-mail message stated that they wanted to discuss the recent events that have led to the "reorganization of the company". Hmm....anyone in the business world knows what that means! :P It drives me crazy how Korean clients pull their contracts from our company. From my observations, my guess would be it's a quality control issue with our tutors. There is absolutely no professional development or performance feedback, and the training is pretty terrible. After working on my graduate degree, and learning to analyze these kinds of problems and knowing what it would take to fix them, it's hard for me not to say anything.
So, I am back to looking very hard for a new job. I am considering going back to my former place of employment, Alpine Access. The pay won't be great, but at least it will be steady and reliable income. Plus, I would have the opportunity for advancement into a supervisor or training position in the future. The latter is something I am definitely qualified for with my graduate degree and something I would LOVE to be doing again. So, if you could be praying that God would open up a door and that they would be willing to take me back, I would appreciate it! Actually, just be praying that God would open up a door at any company that would be a good fit for me. I would love to be able to use my graduate degree, but if I have to start back in the customer service field and work my way up, I will do it so that our family can make ends meet!
6/17/11 - Update - Well, Alpine Access is a no go. It looks like even though I worked for them awhile ago, I am not elligible for rehire. My guess it has to do with the amount of absences I had before I left because of Lyme Disease. It obviously wasn't God's will, but it's a little hard to swallow because I have always been a good employee. Please keep praying that God will provide a job for me. Thanks!
Well, I need to go take some meds. Thanks for praying friends! I will keep you posted! :)
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