Well, I thought I would make a post tonight before I go to bed. It's been a horrific day symptom-wise, and I still have one more round of meds to do in 30 minutes. Since I don't want to fall asleep and then have to wake myself up again, I am going to give you an update tonight. Plus, since I didn't get any homework done today, tomorrow will be busy.
As you can tell by the title, I started Rifampin this week. This drug hits the co-infection Bartonella that I have along with Lyme Disease and Babesia. For those of you who just thought I had Lyme, nope...the tick decided that it wasn't enough to bless me with one type of infection, I got two others in the process. Bartonella is something that my doctor thinks I have big time. After experiencing what I did today, I will agree 100%. Let me back up and start at the beginning of the week.
Tuesday evening was my first day to take Rifampin. I was not looking forward to it. I had heard horror stories of this drug from friends who had taken it. So although I was hoping I would not be adding to that statistic, I thought I had done a pretty good job of preparing myself for what might come. First, we had to get past the initial test. As you all know, I don't have a very good track record of being able to take medicines and supplements without having allergic reactions. However, since we have found NAET, and I get weekly treatments, I have had more successes in the last couple of years. Last week I had an NAET treatment to this drug, and so thankfully, I took it and did not have an allergic reaction. Yay! In fact, I honestly couldn't even tell that I took it. I didn't feel any different than I normally do. Wednesday evening was the same and so was Thursday evening. Granted, I was only taking half of the dose I was supposed to be at because I always start low and work myself up, but honestly, I couldn't even tell this drug was part of my treatment protocol. Thursday evening Brian and I were talking about it, and I told him how shocked and thankful I was that I wasn't getting any symptoms from it. In fact, I actually mentioned that I was a bit concerned that maybe it wasn't hitting the Bartonella like it should. Brian said to not speak too soon as I hadn't taken the full dosage yet. Well, I am kicking myself because I definitely spoke to soon. I woke up on Friday morning and my body just decided to fall apart.
It started when I first got up. I noticed that I felt really dizzy and nauseous. Now, this in itself, isn't anything new, but it was a bit more intense. I usually drive myself to an NAET appointment every Friday (the only place I am physically able to go by myself), but after getting 5 minutes down the road, I had to turn around and come home as I knew I would never make it to that appointment.
I got home at about 8:30 and within an hour I was experiencing a symptom that I hadn't experienced since I first got sick. Six years ago, when I first got sick, I experienced a horrific symptom of my throat randomly swelling. Sometimes it was related to what I ate and sometimes not. It got so bad that it brought my diet down to chicken and a special kind of water. I couldn't go anywhere or be exposed to anything without having an adverse reaction. Those six weeks were a nightmare. I never knew if the next thing I was exposed to or the next thing I would put in my mouth would have the ambulance at my door step. It was a time I NEVER want to relive, so you can only imagine my fright when that symptom popped up this morning. I started having trouble eating, swallowing and it affected my breathing. From there, it got worse. By about 11:30, I could barely get out of bed I was so dizzy. The room would not stop spinning. My face, arms, hands were completely numb. I could still operate them, but I couldn't feel a thing. By 1:00 my heart started beating extremely fast, and I was experiencing constant fluttering. It was at this point that one of my dear friends urged me to call my Lyme Disease physician. I am pretty stubborn about calling the office, and always second guess whether it's necessary or not, but this time I didn't fight it. I was literally in my bed with the covers pulled up as far as they could go just praying that God would take away these symptoms. I literally wanted to crawl out of my skin.
The nurse called me back within about 2 hours and told me to stop taking Rifampin for about 4 days. They want me to try and start it back up again next Tuesday. Everything in me wants to scream NO WAY after what I experienced today, but at the same time, I now know that this infection is probably what has caused me to be so sick after all these years and that we have found a drug that will fight it (and that I am not allergic to). I know that if I can do it, I need to push past the symptoms to get to the other side which might just lead me on the path to wellness. So, I will try it again. If this is what I have to do to get well, I will do it. God is my protector, and He will keep me safe and bring me peace.
Today, when I was in the midst of it all, one of my sweet friends texted me Psalm 41: 2-4. I thought I would type it up so that hopefully it will be as much of an encouragement to you as it was to me...
"The Lord protects them and keeps them alive. He gives them prosperity in the land and rescues them from their enemies. The Lord nurses them when they are sick and restores them to health. Oh Lord. I prayed, have mercy on me. Heal me, for I have sinned against you."
Such a good reminder of the protection that we can only get from the Lord. He is our true source of strength and healing. We are blessed to have been given such continued grace even though we deserve so much less.
Well, it's about time for me to take my meds tonight, so I need to get going. Thank you for those of you who prayed today. It was such an encouragement to receive your responses on Facebook. Please continue to be in prayer for this next week. I really need to be able to take this drug successfully. It looks like I have a very difficult road ahead of me, but as I said before, I will do whatever it takes to get well. We so desperately want to be out in the world again. :)
May you have a blessed weekend!
Friday, February 25, 2011
Sunday, February 20, 2011
Here we go...
This is going to be a short post and boy do I mean short! :) Well, we are officially now submerged in chaos between my schedule and Brian's. :) My graduate coursework is insane and the further we get into this semester, the tougher it gets. My professors are awesome, but with how cruddy I have been feeling this past week, the homework load looks extremely daunting.
Brian feels pretty confident with his performance on section #2 of the CPA exam last Friday. I am so proud of him!!! We should get the results in about 4 to 6 weeks. His schedule is as crazy as mine as he is immediately going to have to start studying for section #3 while also working on his two college courses.
I wanted to update you and tell you that we found a supply of the heparin that I am not allergic to. Praise the Lord! There is an awesome receptionist who works at my local doctor's office and she went on a hunt and came up with a 5 month supply for me. We ordered enough so that there would not be a chance that we would run out while we finish up IVs. We will have to stop probably in about 5 months and switch to oral antibiotics because we will no longer be able to afford the cost of intravenous therapy. So, Brian and I are both praying hard that these last 5 months will hit the bugs hard and that God would stretch our finances for us to be able to make it to our goal.
I didn't do IV treatment this past week, because we didn't have the heparin flushes, but will start again on Tuesday. We are also set to start Rifampin which will hit the co-infection Bartonella. Please pray that this does not hit me as hard as I am afraid it will. I know Bart is a big player in why I am so ill, so we are hoping that I can take this medicine successfully and we will actually see some gains instead of a big crash!
I want to put this announcement out here so that you are ready in a couple of weeks when I ask for help. For my big research project requirement for my master's degree, I am going to be investigating the impact that social media (Facebook, Blogs, and other online social networks) has on patient education in relation to Lyme Disease. I will be putting together a survey and will be asking for participants (I need about 50 to 100). Also, I am going to be intertwining patient stories, so I will need as many as I can collect. I have started putting together a blog for this project and that is where the survey and patient stories will be displayed along with a weekly discussion activity for any who are willing to participate. So, if this interests you, and you want to be a part of the study, watch for an announcement through Facebook and/or this blog. You can participate in any or all of the 3 activities. I would love for this to be published in an academic journal which would be yet another way that would help raise Lyme Disease awareness.
Well, that is all for now. I need to try and get some sleep as this past week was pretty awful symptom-wise. Please just keep us in your prayers. Treatment is tough, school is tougher and the exhaustion from the constant stress is the toughest. I will try to update you soon! Blessings!
Brian feels pretty confident with his performance on section #2 of the CPA exam last Friday. I am so proud of him!!! We should get the results in about 4 to 6 weeks. His schedule is as crazy as mine as he is immediately going to have to start studying for section #3 while also working on his two college courses.
I wanted to update you and tell you that we found a supply of the heparin that I am not allergic to. Praise the Lord! There is an awesome receptionist who works at my local doctor's office and she went on a hunt and came up with a 5 month supply for me. We ordered enough so that there would not be a chance that we would run out while we finish up IVs. We will have to stop probably in about 5 months and switch to oral antibiotics because we will no longer be able to afford the cost of intravenous therapy. So, Brian and I are both praying hard that these last 5 months will hit the bugs hard and that God would stretch our finances for us to be able to make it to our goal.
I didn't do IV treatment this past week, because we didn't have the heparin flushes, but will start again on Tuesday. We are also set to start Rifampin which will hit the co-infection Bartonella. Please pray that this does not hit me as hard as I am afraid it will. I know Bart is a big player in why I am so ill, so we are hoping that I can take this medicine successfully and we will actually see some gains instead of a big crash!
I want to put this announcement out here so that you are ready in a couple of weeks when I ask for help. For my big research project requirement for my master's degree, I am going to be investigating the impact that social media (Facebook, Blogs, and other online social networks) has on patient education in relation to Lyme Disease. I will be putting together a survey and will be asking for participants (I need about 50 to 100). Also, I am going to be intertwining patient stories, so I will need as many as I can collect. I have started putting together a blog for this project and that is where the survey and patient stories will be displayed along with a weekly discussion activity for any who are willing to participate. So, if this interests you, and you want to be a part of the study, watch for an announcement through Facebook and/or this blog. You can participate in any or all of the 3 activities. I would love for this to be published in an academic journal which would be yet another way that would help raise Lyme Disease awareness.
Well, that is all for now. I need to try and get some sleep as this past week was pretty awful symptom-wise. Please just keep us in your prayers. Treatment is tough, school is tougher and the exhaustion from the constant stress is the toughest. I will try to update you soon! Blessings!
Thursday, February 10, 2011
And she's down....
I am going to warn ya ahead of time. It's been a REALLY hard week both physically and emotionally. I have read about a lot of my friends getting to this place, but I had never experienced it until this point. Physically, I am feeling worse by the day. Thankfully, I had a phone appointment with my doctor's PA on Tuesday morning and we are going to change some things up. She said that my quick decline when I was off antibiotics and all of my symptoms (electric shocks, numbness/tingling, chest pain, heart palpitations, bone pain, cognitive issues, anxiety etc.) are a big sign of the co-infection Bartonella. It helps that I have a couple of visible purple streaks on the sides of my hips. No, they are not stretch marks, lol. :) That is one of the signs of Bartonella. Lovely! :) We had always suspected that, but it was good to have it affirmed by the PA.
The reason why I had such a flare is I had been off IV azithromycin for about a month while we got my new supplies ordered by my local doctor and also we were waiting on my new infusion company to send us our order. It was nice to not have to do IVs for a bit, but I declined very rapidly. My PA said that Lyme symptoms usually take a couple of weeks to reappear when you are off antibiotics, but Bart happens very quickly. So, that was another sign to her that this is probably playing a big part in why I am so ill. She is going to be putting me on oral Rifampin along with IV azithromycin and oral amoxicillin. If I do well, with orals, then we will move to IV Rifampin. I will fully admit that I am pretty nervous to start Rifampin. I have heard some crazy horror stories of crashes on it. I haven't met one friend who survived this medication in the beginning stages with little to no symptoms. The symptoms they did experience would scare almost everyone. So, I will refrain from actually typing them in order not to scare myself. :P I really can't afford to crash on this med with my current schedule. I am barely surviving as it is. So, if you could pray for God's protection in a major way, I would appreciate it.
Also, it's been a rough week emotionally. I just feel attacked on pretty much every level. My guess is it's due to Bart because it can really mess with things in your head both physically and emotionally, but it's been a big struggle to keep positive, hopeful and to find peace. I am not sleeping well at all which doesn't help things. I am just sad and tired and when I look at treatment and talk to my friends, I really don't see an end in sight. Brian and I did our finances and we can afford about 5 more months of IVs. That scares me because that means we have only that amount of time to hit the bugs hard. After that, we are back to orals which I never do very well on because of my stomach issues.
We also have a huge prayer request. Tonight, I had an allergic reaction to the heparin lock flush that I have to use in order to keep my IV port from clotting. I use it once a day at the end of my IVs. Recently, we had to switch to a new company (the ZR Flush by Excelsior) because the heparin flush we were using by Tyco/Kendal was out of stock until mid-year (or so we were told by a medical supply company). Thankfully, I had one last one of the old version and was able to re-flush my line with the stuff I wasn't allergic to, but now we are completely stuck. If the company is out until mid-year, then we are going to have to find something else that works. I think I might know of one other brand, but I am not sure. Whatever we do, it's going to put a hault on treatment until we find something, order it and try it, which will cause me to once again to lose ground.
I have also had a lot more trouble completing my school work. Writing has always been one of the things I was good at. I would complete a paper for a class and have Brian just read over it. He would only find a couple punctuation errors. I didn't struggle at all last semester. However, since I started school a couple of weeks ago, when he reads my papers, he finds a ton of errors. Brian even had to help me with this blog post. This is devestating for me. I have to make it through 3 more grad classes (2 this semester and one this summer). I can't afford to decline that much cognitively. I have to be in school so we can pay for my treatment. This is really hard for me to deal with.
We are also feeling the financial pressure as my treatment funds are running out and if I can't do treatment, then I will stay sick. Ugh! However, God has always provided and that is about 5 months away. So, we are just going to pray that God miraculously stretches our finances. Thankfully, we are paying a lot less than we were at my old clinic which is why we have those 5 months instead of 2. Our regular monthly budget doesn't help the cause either. Did you know we spend about $600 per month just on my groceries? I have severe food and chemical allergies, and we have to buy everything pretty much organic and very specific items. Then, you add that to what it costs for all of my supplements/medications and allergy treatments and we are up over $1000 and that doesn't even include IV costs and doctor's appointments. Have I made you gag yet? It's pretty crazy! So, now you have a picture of the pressures that are on us. Oh geesh, I am crying as I type this! I am usually not this unstable. I hope this gets better with the new meds and not worse! This is not fun!
Brian and I just really need prayer. We know we are going to make it, but we are so drained. It's hard when you don't ever see the light at the end of the tunnel, you have the looming burden of finances that truly affects your chances at getting well, the pressures of school when you aren't thinking clearly and you just go through the same "sick routine" each day sometimes getting worse, but hardly ever seeing glimpses of better. It's hard on Brian as he has to carry all the household responsibilities, take care of me, work on completing two classes and studying for the CPA exam. On top of all those things, we seem to be running into roadblocks every way we turn.
Okay, I probably sound dramatic and for those who don't have Lyme or a long-term illness it's probably difficult to understand all of these thoughts. Lyme Disease patients are all constantly searching and hoping for a cure, trying everything we can to find something that works, but never knowing whether we will be that "success story" that everyone strives for. I wish with all of my heart I could say I was doing better, but unfortunately as of right now, the answer is no. We want to say yes because then life could quit moving on without us, but unfortunately it's not our time yet. So, a message to our family and friends...Please don't give up on us. We love all of you. I don't exaggerate my symptoms or make them out to be more then they are. I would love for them to be less and to not have to experience so many scary things on a daily basis. However, I can't change it. This is a real picture of the fight we face each day. So, if we miss big events, can't call or text, or don't write on a weekly basis, it's not that we don't care, it's just that we are trying to survive. Believe you me, when I am well, we will be showing up at your doorstep unannounced and ready to catch up on all the stuff we missed out on. So, be ready! :)
I write this blog so you can get a true picture. This is the battle of a lifetime for us. When you think about it, just lift us up in prayer. God can work in mighty ways through prayer. We have seen it firsthand every week. Along with all of the health (physical and emotional) stuff I listed above, please be praying for Brian. He takes his second section of the CPA exam this coming Friday. I have confidence he will rock the test, but I know it's been a stressful month. Please pray that God would give him extreme clarity and peace as he takes section #2.
Finally, on a much more upbeat note, I have finished and posted the bracelet that was made in my friend Candice's honor. As I mentioned before, she is an amazing girl who is like a sister to me. Her support and encouragement has gotten me through this past year. She is extremely sick and struggling to afford treatment. All proceeds from the bracelet titled "Shades of Optimism" will go to her treatment costs. Make sure to check out the other bracelet styles too!
Here is the link to "Hope Creations" product page: Products
Well, that's it for now! Sorry, this wasn't a normal cheerful "always find the good in things" post. It's just been a rough couple of weeks for us; however, we'll make it. We always do! We will just have to work harder to fight off the discouragement, but thankfully, the Lord will have the victory and if He can be glorified more if I am sick, then we obediently surrender to that call no matter how hard it gets. Know that you are in our thoughts and prayers!
The reason why I had such a flare is I had been off IV azithromycin for about a month while we got my new supplies ordered by my local doctor and also we were waiting on my new infusion company to send us our order. It was nice to not have to do IVs for a bit, but I declined very rapidly. My PA said that Lyme symptoms usually take a couple of weeks to reappear when you are off antibiotics, but Bart happens very quickly. So, that was another sign to her that this is probably playing a big part in why I am so ill. She is going to be putting me on oral Rifampin along with IV azithromycin and oral amoxicillin. If I do well, with orals, then we will move to IV Rifampin. I will fully admit that I am pretty nervous to start Rifampin. I have heard some crazy horror stories of crashes on it. I haven't met one friend who survived this medication in the beginning stages with little to no symptoms. The symptoms they did experience would scare almost everyone. So, I will refrain from actually typing them in order not to scare myself. :P I really can't afford to crash on this med with my current schedule. I am barely surviving as it is. So, if you could pray for God's protection in a major way, I would appreciate it.
Also, it's been a rough week emotionally. I just feel attacked on pretty much every level. My guess is it's due to Bart because it can really mess with things in your head both physically and emotionally, but it's been a big struggle to keep positive, hopeful and to find peace. I am not sleeping well at all which doesn't help things. I am just sad and tired and when I look at treatment and talk to my friends, I really don't see an end in sight. Brian and I did our finances and we can afford about 5 more months of IVs. That scares me because that means we have only that amount of time to hit the bugs hard. After that, we are back to orals which I never do very well on because of my stomach issues.
We also have a huge prayer request. Tonight, I had an allergic reaction to the heparin lock flush that I have to use in order to keep my IV port from clotting. I use it once a day at the end of my IVs. Recently, we had to switch to a new company (the ZR Flush by Excelsior) because the heparin flush we were using by Tyco/Kendal was out of stock until mid-year (or so we were told by a medical supply company). Thankfully, I had one last one of the old version and was able to re-flush my line with the stuff I wasn't allergic to, but now we are completely stuck. If the company is out until mid-year, then we are going to have to find something else that works. I think I might know of one other brand, but I am not sure. Whatever we do, it's going to put a hault on treatment until we find something, order it and try it, which will cause me to once again to lose ground.
I have also had a lot more trouble completing my school work. Writing has always been one of the things I was good at. I would complete a paper for a class and have Brian just read over it. He would only find a couple punctuation errors. I didn't struggle at all last semester. However, since I started school a couple of weeks ago, when he reads my papers, he finds a ton of errors. Brian even had to help me with this blog post. This is devestating for me. I have to make it through 3 more grad classes (2 this semester and one this summer). I can't afford to decline that much cognitively. I have to be in school so we can pay for my treatment. This is really hard for me to deal with.
We are also feeling the financial pressure as my treatment funds are running out and if I can't do treatment, then I will stay sick. Ugh! However, God has always provided and that is about 5 months away. So, we are just going to pray that God miraculously stretches our finances. Thankfully, we are paying a lot less than we were at my old clinic which is why we have those 5 months instead of 2. Our regular monthly budget doesn't help the cause either. Did you know we spend about $600 per month just on my groceries? I have severe food and chemical allergies, and we have to buy everything pretty much organic and very specific items. Then, you add that to what it costs for all of my supplements/medications and allergy treatments and we are up over $1000 and that doesn't even include IV costs and doctor's appointments. Have I made you gag yet? It's pretty crazy! So, now you have a picture of the pressures that are on us. Oh geesh, I am crying as I type this! I am usually not this unstable. I hope this gets better with the new meds and not worse! This is not fun!
Brian and I just really need prayer. We know we are going to make it, but we are so drained. It's hard when you don't ever see the light at the end of the tunnel, you have the looming burden of finances that truly affects your chances at getting well, the pressures of school when you aren't thinking clearly and you just go through the same "sick routine" each day sometimes getting worse, but hardly ever seeing glimpses of better. It's hard on Brian as he has to carry all the household responsibilities, take care of me, work on completing two classes and studying for the CPA exam. On top of all those things, we seem to be running into roadblocks every way we turn.
Okay, I probably sound dramatic and for those who don't have Lyme or a long-term illness it's probably difficult to understand all of these thoughts. Lyme Disease patients are all constantly searching and hoping for a cure, trying everything we can to find something that works, but never knowing whether we will be that "success story" that everyone strives for. I wish with all of my heart I could say I was doing better, but unfortunately as of right now, the answer is no. We want to say yes because then life could quit moving on without us, but unfortunately it's not our time yet. So, a message to our family and friends...Please don't give up on us. We love all of you. I don't exaggerate my symptoms or make them out to be more then they are. I would love for them to be less and to not have to experience so many scary things on a daily basis. However, I can't change it. This is a real picture of the fight we face each day. So, if we miss big events, can't call or text, or don't write on a weekly basis, it's not that we don't care, it's just that we are trying to survive. Believe you me, when I am well, we will be showing up at your doorstep unannounced and ready to catch up on all the stuff we missed out on. So, be ready! :)
I write this blog so you can get a true picture. This is the battle of a lifetime for us. When you think about it, just lift us up in prayer. God can work in mighty ways through prayer. We have seen it firsthand every week. Along with all of the health (physical and emotional) stuff I listed above, please be praying for Brian. He takes his second section of the CPA exam this coming Friday. I have confidence he will rock the test, but I know it's been a stressful month. Please pray that God would give him extreme clarity and peace as he takes section #2.
Finally, on a much more upbeat note, I have finished and posted the bracelet that was made in my friend Candice's honor. As I mentioned before, she is an amazing girl who is like a sister to me. Her support and encouragement has gotten me through this past year. She is extremely sick and struggling to afford treatment. All proceeds from the bracelet titled "Shades of Optimism" will go to her treatment costs. Make sure to check out the other bracelet styles too!
Here is the link to "Hope Creations" product page: Products
Below is a picture of the new bracelet style! Have I mentioned before that I love pink?!!
Well, that's it for now! Sorry, this wasn't a normal cheerful "always find the good in things" post. It's just been a rough couple of weeks for us; however, we'll make it. We always do! We will just have to work harder to fight off the discouragement, but thankfully, the Lord will have the victory and if He can be glorified more if I am sick, then we obediently surrender to that call no matter how hard it gets. Know that you are in our thoughts and prayers!
Friday, February 4, 2011
Making it through...
Well, I decided to un-bury myself from my mound of homework for a couple of minutes and write a post. :) I am definitely in the throws of the semester and homework is all I see. It's been hard to balance everything, but so far, I am making it. I am just praying I can just plug away and make it to the first week in May! God is definitely helping me big time! I have huge projects this semester including 4 mega design presentation projects in one class and a big research project in my other class. The cool thing is I am going to be doing my first design project on Lyme Disease Awareness and my research project on Lyme Disease and how social media impacts patient education. I have big challenges ahead of me, but I am excited to be doing it about something I am passionate about. I will keep you posted about my projects as I might send out of a plea for help to all my blog readers who have Lyme Disease. :) I am going to need a lot of surveys completed as part of my data collection for my research project. So, if you are willing to participate and want to share a bit of your story, let me know!
Before I get to an update, I want to tell you a couple of things. First, I had the blessing of participating in an auction for one of my dear friends who is like a sister to me. I can't put into words how much her support and encouragement has impacted my life. She is always willing to help others in need and never thinks of herself. She is amazing and I am blessed beyond measure to have such a precious friend. She is extremely sick with Lyme Disease and has had to move out of her family's house. They can no longer support her physically or financially. She is too ill to work and is running out of money for food, medicine/supplements and also doctor's appointments. When I say extremely ill, I mean EXTREMELY ill. It makes my struggles look like a cake walk. She fights for her life day in and day out. A group of her friends decided to start an auction. It ends on Monday (Feb. 7th), so you still have time to bid!! Also, you can make a donation directly to her. Both the instructions for the auction and her donation page can be found at this link: Infectiously Optimistic
For the auction, I donated some of my bracelets that I am selling through my business Hope Creations. Another thing I wanted to announce was that in the next week or so there will be a new bracelet available for purchase at Hope Creations. This specific bracelet was designed by the friend I mentioned above and I, and it will be sold in her honor. All proceeds will go to help her with Lyme Disease treatment costs. The bracelet is BEAUTIFUL and I am excited to post the picture! I don't have all the beads in yet, but I should in the next couple of days. My goal is to have the picture posted by next Friday!
Now, for my other announcement:
♥ Hope Creations is having a Valentine's Day Sale! All Lyme Disease Awareness Bracelets are 20% off with free standard shipping! ♥
There has been a website design change on the product page too! So, check it out! It's the perfect time to buy your loved ones a beautiful bracelet that will make them smile and also help to raise awareness for Lyme Disease. :) Remember, 10% of the proceeds go to "Turn the Corner Foundation". Here is the link: Hope Creations
Okay, now onto my post. It's been kind of a difficult week emotionally and physically. I started back up on IV on Tuesday and hit me pretty hard. I guess, I was just hoping that since I had done so much treatment in the fall, that it wouldn't be that bad this time around, but unfortunately that was not the case. You know, it just further proves that Lyme Disease cannot be cured in 30 days. I did IV antibiotic therapy (that is supposed to hit the bugs a lot harder than orals), and the round this week hit me hard. Doctors who believe that short-term therapy is the cure-all, need to explain to me why I feel so stinkin' sick! Anyways, I had a lot of not-so-fun symptoms pop up again and some were a lot worse. I have been horribly nauseous and dizzy during IVs. I have had quite a bit of twitching and electric shock sensations that make parts of my body jump. I also have had a lot of numbness and tingling and for 4 hours yesterday, I couldn't feel my arms, face and hands. I could move them, but if I poked the skin, there was no sensation. Yikes! I am telling you that is some scary stuff. So I don't completely depress you, thankfully, I have noticed improvement cognitively. When I was off IV, I declined quite a bit. Brian was having to help me edit my grad papers and couldn't believe all the mistakes. However, since I started back up on IVs, I am doing a bit better.
So, you can see why it's hard not to get discouraged. I know it's a long journey, but we can't afford to do IV forever and if 4 months didn't make a dent, then it's hard for me not to worry about what it will take to get me well. I know God is in control, but I have just had to work through a lot of emotions this week. I so desperately want to be well again. I am going to be 31 in March, and I feel like life is just passing us by. I am so tired of the restrictions and of not being normal. It's hard to watch everyone enjoy their families, take trips and be so involved in their churches while the 4 walls of our house are pretty much the extent of what I experience each week. Sometimes, I venture out for doctor's appointments and short shopping trips, but not very often. We desire to have a family so much, but we see all of my medical issues and how old we are getting, and it looks like we are just watching our dreams disappear. Plus, there is that big decision hanging out there that even if my health improves do we take the chance that the Lyme Disease might be passed onto our children? A friend of mine posted some pictures on Facebook and I shared them on my profile page. They were of her sweet girls and basically the message was about how she is wondering if she passed on this awful disease as she is starting to see signs in her kids. After experiencing how horrible this journey can be, it is devastating to think a baby would have to fight this fight. This kind of stuff just breaks my heart! Add all of those emotions to the financial pressures, and it's just hard to deal with sometimes.
I've started looking for online teaching jobs since I will be graduating in August with my master's degree in E-Learning. My passion is teaching. I would love to be able to teach elementary school online. They have a lot of virtual academies, but from what I have seen, they require you to meet with the students for field trips, conferences and tutoring. Obviously, at this point, I am not able to do that yet. Teaching is something I was made to do. I can feel that call on my life. I love watching children grow and to be involved in their academic journey. It's so precious to see a child's eyes light up when they finally grasp the concept or hear the joy in their voice when they succeed. I miss it terribly. If you could be praying that God would provide a miracle job for me, I would appreciate it. I can keep tutoring like I am now, but it doesn't bring in very much money and once our student loans kick in along with all of our monthly medical expenses, well you can only imagine the huge mountain that sits in front of us.
Overall, we are making it through. We are pressing on--relying on God's strength alone to carry us when we can't walk on our own anymore. However, every once in awhile we hit a rough patch and the discouragement starts to creep in. We'll kick it right back out and reach for the truths in God's word, but this just happened to be a post at the end of a long and emotional week. We know our true joy, hope and faith does not rely upon our circumstances, but it rests in the arms of our Lord and Savior.
If you could be praying for us, we would appreciate it. Please pray that we will continue to make Christ the center of our house and that we would rely on Him for all of our needs. Please pray against the discouragement, pain and loneliness. Jesus is fighting the battle for us, and He will have the victory. Please pray that I will continue to handle school, work and treatment. I feel so cruddy with IVs and it's really hard to work on my projects. However, I can't get behind. I have a phone appointment with my Lyme doctor's PA on Tuesday (Feb. 8th) at 9am Pacific time. Please pray that she would have wisdom on what our next steps should be. Also, my in-person appointment with my LLMD has been moved from April 8th to May 6th. We were sad to see it pushed out so far, but I have to remember that nothing happens outside of God's control. His timing is perfect and obviously that is when He wanted us to go! Please pray for Brian. I think he is just as tired as I am of everything. Please pray that God would bless him with an extra measure of rest, peace and joy. I am always so amazed and thankful for how he holds our house together. He is such an incredible gift. I am so blessed!
Well, that's all for now. It's late and I should probably try to sleep. :P Have a wonderful weekend!
Before I get to an update, I want to tell you a couple of things. First, I had the blessing of participating in an auction for one of my dear friends who is like a sister to me. I can't put into words how much her support and encouragement has impacted my life. She is always willing to help others in need and never thinks of herself. She is amazing and I am blessed beyond measure to have such a precious friend. She is extremely sick with Lyme Disease and has had to move out of her family's house. They can no longer support her physically or financially. She is too ill to work and is running out of money for food, medicine/supplements and also doctor's appointments. When I say extremely ill, I mean EXTREMELY ill. It makes my struggles look like a cake walk. She fights for her life day in and day out. A group of her friends decided to start an auction. It ends on Monday (Feb. 7th), so you still have time to bid!! Also, you can make a donation directly to her. Both the instructions for the auction and her donation page can be found at this link: Infectiously Optimistic
For the auction, I donated some of my bracelets that I am selling through my business Hope Creations. Another thing I wanted to announce was that in the next week or so there will be a new bracelet available for purchase at Hope Creations. This specific bracelet was designed by the friend I mentioned above and I, and it will be sold in her honor. All proceeds will go to help her with Lyme Disease treatment costs. The bracelet is BEAUTIFUL and I am excited to post the picture! I don't have all the beads in yet, but I should in the next couple of days. My goal is to have the picture posted by next Friday!
Now, for my other announcement:
♥ Hope Creations is having a Valentine's Day Sale! All Lyme Disease Awareness Bracelets are 20% off with free standard shipping! ♥
There has been a website design change on the product page too! So, check it out! It's the perfect time to buy your loved ones a beautiful bracelet that will make them smile and also help to raise awareness for Lyme Disease. :) Remember, 10% of the proceeds go to "Turn the Corner Foundation". Here is the link: Hope Creations
Okay, now onto my post. It's been kind of a difficult week emotionally and physically. I started back up on IV on Tuesday and hit me pretty hard. I guess, I was just hoping that since I had done so much treatment in the fall, that it wouldn't be that bad this time around, but unfortunately that was not the case. You know, it just further proves that Lyme Disease cannot be cured in 30 days. I did IV antibiotic therapy (that is supposed to hit the bugs a lot harder than orals), and the round this week hit me hard. Doctors who believe that short-term therapy is the cure-all, need to explain to me why I feel so stinkin' sick! Anyways, I had a lot of not-so-fun symptoms pop up again and some were a lot worse. I have been horribly nauseous and dizzy during IVs. I have had quite a bit of twitching and electric shock sensations that make parts of my body jump. I also have had a lot of numbness and tingling and for 4 hours yesterday, I couldn't feel my arms, face and hands. I could move them, but if I poked the skin, there was no sensation. Yikes! I am telling you that is some scary stuff. So I don't completely depress you, thankfully, I have noticed improvement cognitively. When I was off IV, I declined quite a bit. Brian was having to help me edit my grad papers and couldn't believe all the mistakes. However, since I started back up on IVs, I am doing a bit better.
So, you can see why it's hard not to get discouraged. I know it's a long journey, but we can't afford to do IV forever and if 4 months didn't make a dent, then it's hard for me not to worry about what it will take to get me well. I know God is in control, but I have just had to work through a lot of emotions this week. I so desperately want to be well again. I am going to be 31 in March, and I feel like life is just passing us by. I am so tired of the restrictions and of not being normal. It's hard to watch everyone enjoy their families, take trips and be so involved in their churches while the 4 walls of our house are pretty much the extent of what I experience each week. Sometimes, I venture out for doctor's appointments and short shopping trips, but not very often. We desire to have a family so much, but we see all of my medical issues and how old we are getting, and it looks like we are just watching our dreams disappear. Plus, there is that big decision hanging out there that even if my health improves do we take the chance that the Lyme Disease might be passed onto our children? A friend of mine posted some pictures on Facebook and I shared them on my profile page. They were of her sweet girls and basically the message was about how she is wondering if she passed on this awful disease as she is starting to see signs in her kids. After experiencing how horrible this journey can be, it is devastating to think a baby would have to fight this fight. This kind of stuff just breaks my heart! Add all of those emotions to the financial pressures, and it's just hard to deal with sometimes.
I've started looking for online teaching jobs since I will be graduating in August with my master's degree in E-Learning. My passion is teaching. I would love to be able to teach elementary school online. They have a lot of virtual academies, but from what I have seen, they require you to meet with the students for field trips, conferences and tutoring. Obviously, at this point, I am not able to do that yet. Teaching is something I was made to do. I can feel that call on my life. I love watching children grow and to be involved in their academic journey. It's so precious to see a child's eyes light up when they finally grasp the concept or hear the joy in their voice when they succeed. I miss it terribly. If you could be praying that God would provide a miracle job for me, I would appreciate it. I can keep tutoring like I am now, but it doesn't bring in very much money and once our student loans kick in along with all of our monthly medical expenses, well you can only imagine the huge mountain that sits in front of us.
Overall, we are making it through. We are pressing on--relying on God's strength alone to carry us when we can't walk on our own anymore. However, every once in awhile we hit a rough patch and the discouragement starts to creep in. We'll kick it right back out and reach for the truths in God's word, but this just happened to be a post at the end of a long and emotional week. We know our true joy, hope and faith does not rely upon our circumstances, but it rests in the arms of our Lord and Savior.
If you could be praying for us, we would appreciate it. Please pray that we will continue to make Christ the center of our house and that we would rely on Him for all of our needs. Please pray against the discouragement, pain and loneliness. Jesus is fighting the battle for us, and He will have the victory. Please pray that I will continue to handle school, work and treatment. I feel so cruddy with IVs and it's really hard to work on my projects. However, I can't get behind. I have a phone appointment with my Lyme doctor's PA on Tuesday (Feb. 8th) at 9am Pacific time. Please pray that she would have wisdom on what our next steps should be. Also, my in-person appointment with my LLMD has been moved from April 8th to May 6th. We were sad to see it pushed out so far, but I have to remember that nothing happens outside of God's control. His timing is perfect and obviously that is when He wanted us to go! Please pray for Brian. I think he is just as tired as I am of everything. Please pray that God would bless him with an extra measure of rest, peace and joy. I am always so amazed and thankful for how he holds our house together. He is such an incredible gift. I am so blessed!
Well, that's all for now. It's late and I should probably try to sleep. :P Have a wonderful weekend!
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