Hello Friends! I hope everyone's summer is going well. It is SOOOOO hot here. Can you tell I don't like the heat? I know...we live in the wrong place to not like heat, lol. Well, it's beautiful weather 3/4 of the year if you can make through a few short months of extreme heat. So, it's worth it!
Before I get to explaining my title, I first want to say congratulations to my sister-in-law who got married this past Friday. I was unable to attend the wedding, but Brian went and sent me pictures via his cell phone. She was honestly one of the most beautiful brides I have ever seen. I would post a picture of her, but since I don't have her permission and she is currently on her honeymoon, I can't do it yet. :) Brian and I are so thankful for the man God brought into her life. They are an incredible couple who love Jesus with all of their heart. It will be exciting to see God's plan for them unfold as I know they will impact His Kingdom in mighty ways.
Now onto an update. It broke my heart to not be able to be there to support her, but I was so thankful that I was well enough (or so I thought) to let Brian fly back to Nebraska. I had made it about 4 days without him a couple of weeks ago when he went on a business trip. It was uneventful except for a sprained ankle (long story, lol), so I thought this wouldn't be any different. Brian left on Thursday and the wedding was on Friday. Brian called to check in late Friday evening after the ceremony/reception and I was doing okay. During the day on Friday, I had started noticing that I wasn't tolerating the heat very well for some reason when I was outside with our puppy. I would get pretty sick and feel like I was going to pass out even though I was only out there for about 5 minutes. That was strange for me because I had never really had a problem with heat before. So, it wasn't fun, but I was making it through and I didn't really think much of it.
After I talked to Brian and said goodnight, I started getting ready for bed and that is when everything went crazy. It hit me hard. The room was spinning and I had to hold onto things to get places. I was short of breath, freezing cold and shivering, but sweating at the same time, had tingling and numbness all over my body, crazy heart rhythms, stomach cramping (not related to anything I ate) and had trouble keeping water down which is SOOO important because I dehydrate so easily. I literally felt like I was going to pass out about every 5 minutes no matter whether I was standing, sitting or lying down. This is why I named this post "ANS...the necessary evil." I will explain.
ANS stands for the Autonomic Nervous System. For those of you who don't know a lot about medical things (consider yourself blessed, lol), this is the part of your body that controls everything that happens "automatically". That is how I keep the two nervous systems straight. So, it controls your heart rate, breathing, temperature control, digestion and list goes on and on. That is where the "necessary" part comes in. No one can live without it! For me, Lyme has attacked the part of my brain that houses the ANS which is why I suffer from Dysautonomia. Dysautonomia symptoms are like I described above, but up until this point, I hadn't EVER experienced anything to this magnitude. It probably didn't help that I got so ill, so fast and Brian was gone. Plus, we haven't really been able to meet or fellowship with anyone in Tucson because I have been so sick since we moved down here. So, even if something did happen, there isn't anyone to call or assist. So, being alone with God truly does take on a new meaning when I am in these types of situations. I didn't get any sleep the entire night and prayed like never before.
I was unable to reach anyone late at night, but in the morning, I got a hold of Brian. The wedding festivities ended Friday evening, but he had planned on staying until Sunday afternoon. However, with how sick I was, he decided to come early. Praise the Lord! I am still not doing good at all, but thankfully, the intense magnitude of my Friday night experienced has lessened a small amount. We have our speculation as to what is happening, but we aren't medical doctors, so we can't say for sure. It's our guess though, since I have been off antibiotic treatment (that was fighting the Lyme) for about six weeks, that the bacteria has had a field day as it senses freedom. Basically, it's probably having a party. Obviously, it didn't get the "you're not invited memo" I sent out. :P So, it's attacking my ANS like never before.
This gap in treatment was really unavoidable. The treatment I was on with the doctor in CA was making me way too sick in a bad way, and we have had to wait for an appointment with the new doctor in July. Thankfully, we are almost there. July 7th is our appointment with the doctor in Phoenix. Boy, can it not come fast enough! I am probably going to be a literal mess by then, but that is what happens when you seek help from MCS and Chronic Illness specialists. They are in high demand these days and no matter how sick you are, you have to wait like everyone else.
So, that leaves me asking for some prayer. Please pray that my ANS will calm down. I would ask for protection that it won't get any worse in the next 10 days. We would also ask you to start praying for that appointment. We really need this physician to help us. This weekend brought my level of sickness to an entirely new level. I have a good feeling about her, but you never know until you meet and talk over a treatment plan etc. Please pray that she will have wisdom on how to treat me as my case is so tricky with my MCS and now my severe Dysautonomia. Please also pray that we would have wisdom in the area of direction of our lives (I know that is a big general statement, lol). We have some decisions to make about my future treatment, finances, grad school etc. We are trying to just take things one day at a time, but sooner or later, we are going to have to choose certain paths.
Finally, I have an appointment with my regular internal medicine doctor on Friday. Brian is going to go with me (thank goodness) as this is the first time I will see her since I was diagnosed with Lyme and have been on treatment. If you read my "About Lyme Disease" section, you will see that there are two ways to treat Lyme and that it's tricky to test and diagnose. My guess is this doctor will disagree with how we have chosen to treat Lyme and we are not even sure if she will agree with my diagnosis all together. However, we need to see her so that she will write scripts for some of my maintenance meds. Please just be praying that the Lord will work in mighty ways and that she will be supportive and even willing to help. What a miracle that will be!!!
Well, that's my update. It's been crazy, but I have sensed the Lord's presence and His hand upon us in so many ways. This is such a scary road sometimes, but with God, we don't have a reason to fear. Sometimes, I have to beat that phrase into my head, but it's so true!. He is truly in control and we are just trusting that he will protect and lead us with every step we take. Thank you for your continued prayers.
Below is a video of an incredible worship leader, Kari Jobe, singing a song called "Beautiful". This really spoke to my heart Friday night. It's such a peaceful and beautiful worship song. You will have to hit pause on my music player at the bottom of this page so it doesn't interfere as you listen. I hope it touches your heart like it did mine.
Sunday, June 27, 2010
Wednesday, June 16, 2010
Waiting, waiting, waiting
Hi! Sorry, I have delayed in posting after my appointment last week. It's been a rough four days physically, and I have been trying to tackle a huge portion of my huge graduate project. It's been good to be distracted as Brian has been gone on business; however, he comes home today!!! Yay!!!
It's been pretty interesting since we have been in the "in between doctor transition". When I was previously on Dr. J's protocol and I stopped treatment for about a month, I actually felt good. However, there was a doctor switch and a med changes and ever since then, whenever I gap treatment, I am just getting sicker. Last night was pretty difficult to get through and probably magnified by Brian being away; however, I had horrible vertigo (the world just wouldn't stop spinning), numbness all over my body lasting up to an hour at times and just felt achy like I had the flu. So frustrating! I have also noticed the "oh not so fun" cognitive issues popping up again. Ugh!! It's hard when you have to wait to see doctors because they have such long waiting lists. I will be SOOOO excited for my appt. in Phoenix on July 7th. This doctor seems like she will be the best fit for me as she specializes in Multiple Chemical Sensitivities (MCS) and Lyme Disease. Lyme Disease is tricky enough to treat and many patients have to experience years of treatment and see multiple doctors before the right protocol gets them well or at least puts them in remission. What works for someone does not always work for someone else. So, it's very challenging. Then, when you add in the chemical sensitivities and the insane allergies, it makes it even worse. It's hard when you are so allergic to meds and supplements that you can't take what you need to get well. So, that is why we knew it was time to pursue not just a doctor who specializes in Lyme, but also a doctor who specializes in MCS.
I did get a recommendation from someone about a local ND (Naturopathic Doctor) who works with Lyme patients and also has experience in MCS. We saw him last Friday. It was a good appointment and he was very nice and you could tell he has done a lot of research on Lyme Disease; however, it seems like what was missing was his confidence in knowing how to treat MCS patients who have Lyme Disease. He was honest with us (which we appreciate!) and told us that I am such a tricky case (that is not an unfamiliar comment, lol). However, it seemed like we were focusing too much on what we can't do instead of what we can do. He did do some testing and said I "should" be okay with some supplements to help with detoxification. I haven't tried them yet because Brian has been out of town, but will in the next couple of days. Time to be brave as it's always hard to try new things because I am so reactive. However, I am willing to do anything to get well, so I will give it a shot! :) I am supposed to have a follow-up appt with him on Friday, but I am going to move that out a week since I haven't been able to try any of the new things he wanted me to take because of Brian's business trip.
I am really looking forward to seeing the doctor in Phoenix though. I had a free 15 minute consult with her on the phone and was extremely impressed. She is very knowledgeable about how to treat Lyme Disease and all of the co-infections (I have Bartonella, Babesia and HHV6), but the best part is she REALLY knows how to treat MCS. She follows the protocols of a famous MCS doctor in Texas and said that she has been able to get her patients to be able to tolerate a lot of her Lyme protocols because she also treats MCS at the same time. What a breath of fresh air! This is the first doctor to really know and understand what it means to have MCS, the limitations and how to help you improve. If we could get my MCS under control, treating the Lyme would be easier (well, as easy as you can get when you are dealing with such a complex illness).
So, that is an update! Brian has been in sunny CA at a training conference for his accounting firm. He has been stuck in the classroom all day, so that has kept my jealousy from getting out of control (I have always wanted to go to CA...hopefully someday!). J/K I am happy for him when he gets to travel like this because it gets him away from our intense and small world. His sister is getting married on June 25th. We are so excited for her!!! It breaks my heart that I won't be able to attend the wedding because I am too sick to travel. However, Brian will be going and I am glad he will be able to be a part of it.
So, if you could be praying for a couple of things, we would appreciate it. First, that my Lyme symptoms would not get out of control as I am off treatment and waiting to see the new doctor in Phoenix. July 7th is quickly approaching, but it seems like I am getting so much worse off of treatment this go around. The symptoms can be downright scary, so if you could be praying for peace, I would appreciate it. Also, I will have to be alone again when Brian goes to the wedding. Not that I can't handle it (I've done pretty well, the last 4 days), but it's hard for him to be away when I am so symptomatic and also hard for me to get through the episodes. Finally, if you could be praying for our upcoming appt on the 7th. We are desperately praying that this will be a good fit for us as our other option in CA is about 12 hours away. What an amazing blessing it would be to only have to travel aproximately 2 hours to see a doctor!!
Well, that is all for now. I hope everyone is having a great summer! I think our AC is running constantly now, so I can definitely tell you that the AZ heat is here! :) Have a great rest of the week! Blessings!
It's been pretty interesting since we have been in the "in between doctor transition". When I was previously on Dr. J's protocol and I stopped treatment for about a month, I actually felt good. However, there was a doctor switch and a med changes and ever since then, whenever I gap treatment, I am just getting sicker. Last night was pretty difficult to get through and probably magnified by Brian being away; however, I had horrible vertigo (the world just wouldn't stop spinning), numbness all over my body lasting up to an hour at times and just felt achy like I had the flu. So frustrating! I have also noticed the "oh not so fun" cognitive issues popping up again. Ugh!! It's hard when you have to wait to see doctors because they have such long waiting lists. I will be SOOOO excited for my appt. in Phoenix on July 7th. This doctor seems like she will be the best fit for me as she specializes in Multiple Chemical Sensitivities (MCS) and Lyme Disease. Lyme Disease is tricky enough to treat and many patients have to experience years of treatment and see multiple doctors before the right protocol gets them well or at least puts them in remission. What works for someone does not always work for someone else. So, it's very challenging. Then, when you add in the chemical sensitivities and the insane allergies, it makes it even worse. It's hard when you are so allergic to meds and supplements that you can't take what you need to get well. So, that is why we knew it was time to pursue not just a doctor who specializes in Lyme, but also a doctor who specializes in MCS.
I did get a recommendation from someone about a local ND (Naturopathic Doctor) who works with Lyme patients and also has experience in MCS. We saw him last Friday. It was a good appointment and he was very nice and you could tell he has done a lot of research on Lyme Disease; however, it seems like what was missing was his confidence in knowing how to treat MCS patients who have Lyme Disease. He was honest with us (which we appreciate!) and told us that I am such a tricky case (that is not an unfamiliar comment, lol). However, it seemed like we were focusing too much on what we can't do instead of what we can do. He did do some testing and said I "should" be okay with some supplements to help with detoxification. I haven't tried them yet because Brian has been out of town, but will in the next couple of days. Time to be brave as it's always hard to try new things because I am so reactive. However, I am willing to do anything to get well, so I will give it a shot! :) I am supposed to have a follow-up appt with him on Friday, but I am going to move that out a week since I haven't been able to try any of the new things he wanted me to take because of Brian's business trip.
I am really looking forward to seeing the doctor in Phoenix though. I had a free 15 minute consult with her on the phone and was extremely impressed. She is very knowledgeable about how to treat Lyme Disease and all of the co-infections (I have Bartonella, Babesia and HHV6), but the best part is she REALLY knows how to treat MCS. She follows the protocols of a famous MCS doctor in Texas and said that she has been able to get her patients to be able to tolerate a lot of her Lyme protocols because she also treats MCS at the same time. What a breath of fresh air! This is the first doctor to really know and understand what it means to have MCS, the limitations and how to help you improve. If we could get my MCS under control, treating the Lyme would be easier (well, as easy as you can get when you are dealing with such a complex illness).
So, that is an update! Brian has been in sunny CA at a training conference for his accounting firm. He has been stuck in the classroom all day, so that has kept my jealousy from getting out of control (I have always wanted to go to CA...hopefully someday!). J/K I am happy for him when he gets to travel like this because it gets him away from our intense and small world. His sister is getting married on June 25th. We are so excited for her!!! It breaks my heart that I won't be able to attend the wedding because I am too sick to travel. However, Brian will be going and I am glad he will be able to be a part of it.
So, if you could be praying for a couple of things, we would appreciate it. First, that my Lyme symptoms would not get out of control as I am off treatment and waiting to see the new doctor in Phoenix. July 7th is quickly approaching, but it seems like I am getting so much worse off of treatment this go around. The symptoms can be downright scary, so if you could be praying for peace, I would appreciate it. Also, I will have to be alone again when Brian goes to the wedding. Not that I can't handle it (I've done pretty well, the last 4 days), but it's hard for him to be away when I am so symptomatic and also hard for me to get through the episodes. Finally, if you could be praying for our upcoming appt on the 7th. We are desperately praying that this will be a good fit for us as our other option in CA is about 12 hours away. What an amazing blessing it would be to only have to travel aproximately 2 hours to see a doctor!!
Well, that is all for now. I hope everyone is having a great summer! I think our AC is running constantly now, so I can definitely tell you that the AZ heat is here! :) Have a great rest of the week! Blessings!
Monday, June 7, 2010
Seven Years...
So, this morning I got up at 3:30am. I couldn't sleep anymore, and now, I am currently waiting for the meds to kick in. :) I was reading some blogs and came across one that was talking about her struggle to not let Lyme Disease steal her identity. That kind of hit me like a ton of bricks! I think when you are so immersed in something and every where you turn you are confronted with some aspect of it, it's easy to let it consume you. I realized, I had fallen into that trap also. That's a way to let it win, and I refuse to let it.
So, this post will be different! I do have an appt on Thursday and I will write an update after, but today I want to focus on "Seven Years". Do you know why? Well, I will eventually tell you...let's see how long it takes for you to guess...
It has been seven years since...
It has been seven years since I said "I do" and married the most wonderful man. I have been blessed beyond measure and cherish daily God's gift. I know life has not been easy, but there is no one else on this earth that I would want by my side. Brian, you are my best friend and the love of my life. Thank you for all that you are and all that you do. I look forward to the years to come and believe with all my heart that God will use us in mighty ways for His kingdom.
So, as you probably figured it out, today is our seventh wedding anniversary. When we said "I Do" that day, we definitely did not picture this road. However, it's on this very road that we have grown in ways that would have never been possible. We have learned what "true love" looks like and how it is displayed in a practical way each day. We have learned the impact of compassion and encouragement as it has helped us make it through some really difficult times. We know the blessing of family and friends who have supported us unconditionally. We know what despiration, hope, discouragement, faith, disappointment and joy look like as we have experienced every one of those emotions to the extent of their definitions. I pray with all of my heart that the next seven years will be full of change, healing and more and more love. God is our Savior and through Him all things are possible.
For a graduate project, I had to create a simple website. Now, when I say simple, I do mean SIMPLE. I chose to do it about the story of our engagement and wedding. I am definitely an amateur in web design, but I am learning. For those that were not there on that day, I thought you would enjoy seeing the pictures and reading our story. For those that were there, we are so thankful for each one of you and hope that you enjoy re-living the memories. Click on the title below to be directed to the site.
Our Wedding
So, as I close, I challenge you to cherish every memory, breathe in every moment and relish every day that God has given you. We can never know the future, but we can be confident that God will reign in all His glory if we are willing. Blessings to each one of you!
So, this post will be different! I do have an appt on Thursday and I will write an update after, but today I want to focus on "Seven Years". Do you know why? Well, I will eventually tell you...let's see how long it takes for you to guess...
It has been seven years since...
...i woke up extremely early with a big smile on my face
...i ran down to the guest room at my parent's house and woke-up my wonderful friend Rebecca by jumping on her bed
...i wrote a special "today is the day" card to the one i love
...i packed my suitcase knowing it was the start of a wonderful journey
...i got to wear a "princess" crown reminding me of how God views His daughters
...i wore a beautiful white dress
...i was surrounded by wonderful friends and family
...i walked down the aisle with my father at my side
...i looked into the eyes of my beloved and knew that our lives would never be the same
...i spoke vows that would be kept for a lifetime
It has been seven years since I said "I do" and married the most wonderful man. I have been blessed beyond measure and cherish daily God's gift. I know life has not been easy, but there is no one else on this earth that I would want by my side. Brian, you are my best friend and the love of my life. Thank you for all that you are and all that you do. I look forward to the years to come and believe with all my heart that God will use us in mighty ways for His kingdom.
So, as you probably figured it out, today is our seventh wedding anniversary. When we said "I Do" that day, we definitely did not picture this road. However, it's on this very road that we have grown in ways that would have never been possible. We have learned what "true love" looks like and how it is displayed in a practical way each day. We have learned the impact of compassion and encouragement as it has helped us make it through some really difficult times. We know the blessing of family and friends who have supported us unconditionally. We know what despiration, hope, discouragement, faith, disappointment and joy look like as we have experienced every one of those emotions to the extent of their definitions. I pray with all of my heart that the next seven years will be full of change, healing and more and more love. God is our Savior and through Him all things are possible.
For a graduate project, I had to create a simple website. Now, when I say simple, I do mean SIMPLE. I chose to do it about the story of our engagement and wedding. I am definitely an amateur in web design, but I am learning. For those that were not there on that day, I thought you would enjoy seeing the pictures and reading our story. For those that were there, we are so thankful for each one of you and hope that you enjoy re-living the memories. Click on the title below to be directed to the site.
Our Wedding
So, as I close, I challenge you to cherish every memory, breathe in every moment and relish every day that God has given you. We can never know the future, but we can be confident that God will reign in all His glory if we are willing. Blessings to each one of you!
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