D-day (is that appropriate?)

Last night I got kinda emotional.... again (but really only having two break downs through this is not bad at all) and I know it was just because I was tired. I went to R.S. to teach a class I signed up to do 3 months ago on how to make birds nest necklaces and I think I did too much. I came home and was just so sore and tired, and embarrassed for the way I looked and sounded, and the way my hands would shake and not function properly. It was hard because I love making birds nest necklaces and it made me think of all the things I love (and that help me feel better) that will be so hard to do now.... leather work, zen doodling, painting, rendering, painting walls and furniture, and to a much lesser extent looking pretty (but Don and I have been brainstorming ways we can still have nice family pictures, they will just have to be themed so I can have my eyes covered... we are thinking pirates, international spies, jail profile pictures and so on, so this could really be a good thing). My sweet and amazing husband was there to hold me, to listen to me, and to cheer me up. We played a fun game... Who can find the best 90's love ballad to describe our relationship? I cheated and chose Faithfully by Journey (who can't win with that one?) but I think Don took the cake when he chose Amazed by Lonestar. I found it funny that we spoke to each others music genre instead of our own... I chose classic rock for him and he chose country for me (we are just so good together!). So all in all I went to bed happy after my sweet husband made me smile, held me, and we ate a whole bag of mint m&m's.

This morning we go back to the Neurologist... we will drop Leigha off at school and head straight for the hospital. I am calling today D Day, I don't know if it is appropriate (most likely not) but for me I am really hoping it is Diagnosis Day. I hate to say I am scared because that leaves less room for faith, so I will say that I am nervous about what the verdict will be. Do I really want myasthenia gravis? No, I really do not. Can I live with myasthenia gravis? I absolutely can, and still be happy and live a full life. So this is me stating to the world and to myself that: NO MATTER WHAT HAPPENS, I KNOW IT IS RIGHT AND I CAN HANDLE IT!!!!

I have a lot of questions that I hope will be answered in just one short hour.... thank you again for all the prayers on me and my families behalf... we love you!

Tests, Tests, Tests, and Good, Better, Best

I met with the Neurologist yesterday, and just as we thought, he thinks as well that it could be myasthenia gravis.... but to confirm it we needed to do a lot of different tests, so as soon as I was done with him at Timpanogos Hospital we went straight down to Utah Valley Regional Hospital to start the tests. The tests are really interesting so I thought I might do a little run down on each of them as I go through out the last 2 days.

The first was the CT Scan: this scan was actually kinda funny, I could not help but laugh a little while it was happening, and I have laughed a lot about it since. The CT Scan I needed was to check my thymus gland... from what I have studied and been told, the thymus gland is part of the autoimmune system and it creates an antibody called acetecholine.... when you are a child you have a large thymus, but as you get older your thymus gets smaller and eventually turns into fat. In people with myasthenia gravis the thymus stays large and the antibodies it creates starts to attack the receptors that go between the nerves and the muscles. So back to the test, since it is to check the thymus they had to do the CT scan with contrast (I thought it would be like the contrast that I had with the MRI, but it was not!). The technician got me onto the bed which was then raised up and he put an IV into my arm... they pumped me full of saline and did a couple of runs through the machine (which looks like a giant donut). The bed goes through the donut and the machine tells you when you can breathe and when you need to hold your breathe.... there is also a funny little light to tell you. Then he told me what it would feel like when they put in the contrast.... here is how it went: first you will feel warm in your hands and your head and your heart and then you will feel like you peed your pants, but don't worry because you didn't. I did not think that it would actually feel like that, but sure enough as the contrast went in my hands started to feel warm and then my head and then my heart, and then it REALLY REALLY did feel like you peed your pants for about 4 minutes. I was having such a hard time not laughing, but I had to remind myself to sit very still so I would not have to do it again. Then the technician came in and we got to talking, I told him how much it felt like I had peed my pants and he said the best part of his job is getting to watch people check... I laughed about that so hard because that is SO something I was about to do.... and something that if I had his job would love doing. So with the CT Scan they are checking for a large thymus and also tumors on the thymus. Is it bad that I kinda am hoping for a tumor? I only say that because then they could remove it and in a few years I would be fine. With myasthenia gravis there is no cure, and treatment is only to reduce symptoms so pretty much this is something I might have for the rest of my life (I am still hoping that ALL the tests come back negative and that it is just a really expensive nothing). 15% of people with myasthenia gravis have tumors... almost ALL of those are non-cancerous.

After that we went to get the 6 tests of blood work done, but some of the tests have to be sent to other hospitals to be read because they are so rare, and we missed the UPS guy by 5 minutes! So that test had to be done today. We went home where my amazing mother-in-law and sister-in-law were watching the kids, and then they took them over night again... that was SUCH a HUGE help because testing this morning started at 6:45.

Which brings us to today. Test number 2 (number one for today) started bright and early at Timpanogos Hospital, it was the nerve and muscle stress tests. This was the weirdest of ALL the tests I have done. First was the nerve tests. The doctor measured and marked places on my hands and arms and then did a mixture of acupuncture and electro shock therapy. He would put a little needle in somewhere, not even one of the places he had marked and then he would put an electric probe on the places he marked and send an electronic pulse through that would trigger different reflexes, it would be measured in waves on a screen. He did it several times on multiple places in both of my arms and face... the hardest part about this for me was switching sides because it meant having to sit up and move. It felt weird, but I have been electrocuted so many times before with switching out light fixtures that it was not a surprise for me. Next was the muscle stress tests, and with this one I was not sure exactly how they did it. They put a jelly on me and then covered it up with the little sticker type things, just like if you were getting an ultrasound, but then they did a really painful tapping, at first they just did singular taps and then in a rhythm of 5 for a couple times. He said he would do it in 2 places in my arm and then 2 places on my face. When they did the ones on my face it was right up by my eyes, and it hurt pretty bad, especially when they did the periods of 5 consecutive taps. He said he was getting some interesting readings and he felt bad but he would need to do it in a third place on my face. Then he asked me which side of my face drooped more and when I told him it was the right, we had to do the test on my face on the right side as well. So instead of 2 on my face we did 5 on my face. I am glad that test is over, even though to me it was the most interesting (other than feeling like I had peed my pants). They did this test to make sure that my nerves and muscles are still communicating, it is another way to see if this could be myasthenia gravis.

After that we went home and rested for a half hour and then went down to Utah Valley Regional Hospital for the blood test and the pulmonary heart test (breathing test). The blood test was pretty typical, but they tested a lot of things, some of them the techs had never even heard of before, they were not even on the list, so the tests had to be written to the side along with what color test tube they needed to be in. They did 2 thyroid tests and anti-thyroid tests, along with an acetecholine test and something called an Anti Musk test (that was the one that everyone seemed a bit baffled by). I have great veins so this was not a big deal for me at all (everyone really seems to appreciate my great veins, so that is something I am learning to appreciate about myself as well).

The last test was the Pulmonary Heart test. I did not know what this one was going to be... I knew it was because I had been having episodes where it was really hard to breathe, but I was not sure what it would be like. They brought me and Don into a small room where there was an even smaller glass box with a chair in it and a breathing machine. They had me sit down (I feel bad because I think the doctor wanted me tested while I was having an episode, but the test was done while I could breathe normally) and first had me breathe into the machine normally, then they had me take a REALLY deep breathe and then had me release ALL the air, they did this test a couple of times. We could see the machine reading my breathing.... the good news with this is that my breathing is beyond perfectly healthy. I am able to breathe in 130% of the average person, and breathe out 124%. I guess when I breathe out all the air there was a hiccup at the bottom where it would bottom out stay there and then a few seconds later get lower. The respiratory therapist asked if there was something there preventing me from breathing out, and Don and I both looked at him and said no, it is just because I am a fighter.... I hope that I can say that is true, that when things get to their lowest I can find a way to push harder. Then they did the same test but when I breathed in I breathed in a gas and had to hold it there for 5 seconds before I could release it... this one was actually hard because even though I had filled my lungs to capacity and was holding my breath the gas was still blowing into my mouth.... this test was to measure how much air was getting into my blood to make sure everything was okay. I came in at 97% on that one. The best part about this test was the respiratory therapist, he made it fun. I think he could totally work at Disneyland because he made me feel like I was bout to take the best ride of my life by breathing into this funny machine in this tiny glass box (which was never closed, happy day).

So those were the tests, we have an appointment with Neurologist again tomorrow to go over the test results and hopefully finally have a diagnosis.

Now for the Good, Better, Best. First the Good... I am able to breathe normally, even better than 100%. One of the scariest things about myasthenia gravis is when it effects the muscles in your lungs... some people have to be on respirators, hospitalized, or it can be fatal.... I am thankful that this is something I am not dealing with now, and hope that since my lungs and breathing are SO healthy that this is something I won't have to deal with later. I am grateful for my small episodes, even though they are a bit hard and when they get bad they can be pretty scary, but they go away... I think that is very good!

Better, with ALL the tests we have been going through, and all the other recent financial expenses we have had (cough* cough* new car) I was really nervous about how much the tests would be out of pocket while we are waiting to hear back from the insurance we are trying to enroll in... The CT scan, blood test and pulmonary heart tests, since all done at Utah Valley Regional was only $50! (with bills to come later) but still I count that as a HUGE blessing!

And finally Best.... when Don and I went to go get my prescription filled we found mint m&m's!!!! If you know me, you know that Christmas is my favorite time of the year almost solely because of mint m&m's (not really but I do love those little pieces of heaven).... My mom thinks I have my good better and best in reverse order, but to me right now it is the little things that make me smile, like feeling like I wet my pants, a fun respiratory therapist and mint m&m's.

I am also grateful to be living where we are because I am only 1 mile away from Timpanogos Hospital and only like 4 miles away from Utah Valley Regional Hospital... the Lord definitely has a plan for us, including a time where he wants us to be specific places, and right now I know we are in the right place.

Sorry for any spelling or grammar mistakes...this was done without my eye patch, and I am a bit tired... off to sleep I go.

Another Update and a Plea for Prayer

Time for another update: Last Saturday I thought I might just be tired, I had a hard time scrubbing a pan as I was doing dishes, I just felt like my hands were a bit weak, but thought nothing of it... since then it has progressed to my arms and legs... Here was a funny this morning scenario getting ready for church. I was taking a shower (which kinda makes me dizzy because it is hot and in a small place) and I REALLY needed to shave my legs, so I did not look like a woolly mammoth at church and my boots are still in storage from the move (there was no way I had the strength in my arms or the flexibility in my legs to put on nylons) as you can imagine shaving with double vision, weak arms, and heavy legs was quite an experience... I just had to laugh at that one, hope you can too.

Monday (after blogging) I talked to my best friend Kara, she is a respiratory therapist (and an amazing friend), we were talking about what I was going through and how I was feeling. I told her about my speculations of what I might have and we both came to the conclusion that it was sounding more and more like myasthenia gravis (when she studied about it in school it was referred to as the up down disease because the symptoms start at the top and work their way down). Right after that I got a call from the Ophthalmologist, Dr. Beaty (she has been AMAZING!!!!) I told her my symptoms and she said: Have you heard of myasthenia gravis? I said that I had and she said that we needed to get me into a Neurologist to get a diagnosis.

Tuesday we heard from the Neurologist and my appointment is tomorrow. The rest of the week I pretty much rested, my WONDERFUL MIL and SIL came down and took care of the kids for me on Tuesday and Wednesday so I could rest, and then came down and took them over night on Friday. That was so so so kind, and helped so so so much. I never knew I could be so tired... I don't physically feel sleepy, but my muscles just kinda give up on me.

On Friday I read a Conference talk from April that talked about how the Atonement covers illness (and everything else). It has been so helpful to me. Here is my favorite excerpt:

Elder Orson F. Whitney wrote: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we come here to acquire.”

But really everything was put into perspective for me when I talked to my sister Janice. She lives in PohnPei Micronesia, and we have been keeping tabs on each others health. She has had a strep infection that is resistant to antibiotics for a month now.... She has had all the symptoms I had when I had rheumatic fever 2 and a half years ago (I know I have some WEIRD medical history) and this past week had to be put on IV Antibiotics, she is not hospitalized but went to the hospital twice a day to receive treatment and then the rest of the time she spent with her best friend Kjiersty (who happens to be a doctor). Kjiersty and her sweet family fasted for me, and today I returned the favor... Kjiersty has a younger sister (Hayley) who's husband lost his job 3 years ago so Kjiersty and her husband Jeremy bought them a medical coding company for an income. They have 5 young children and the baby is a special needs child who has to be held all the time. Janice was training Hayley on medical coding. The other night Hayley had a heart attack or stroke and is now in a medically induced coma. Kjiersty left the island (and her husband) took her 2 young children across the world to take care of her sister and her family. It amazes me how fast the world can change and our trials put into light.

I am grateful for this experience of being sick (I hate using sick because I don't feel ill), before I had been focusing on the things that I missed, like being able to pick up and hold my kids (I still can but conner feels like he weighs more than a tank), but now I am so grateful that I can hold my family. I am grateful to know that our Savior knows us. One thing the talk mentioned was how the Savior could have experienced our pain through revelation but He chose to experience it Himself, I am grateful to know that the Lord knows ME, and that he knows Hayley and her family. Really when it is put in perspective, I do not need to fear the Neurologist or the future, whatever it may be... I just need to have faith, and be excited to see this as an experience where I can gain the education I came here to acquire. ... but I am still hoping for good news tomorrow.

P.S. Please pray for Kjiersty and Hayley and their families... I know that it helps, I have felt your prayers.