Sunday, February 8, 2015

My Share of Diseases

When I first received the multiple sclerosis diagnosis, I was having a really hard time feeling convinced that that was really it.  It's just so hard to believe you have a degenerative disease when you are functioning at 100%.  I was convinced that it was a condition called ADEM or Acute Disseminated Encephalomyelitis which is basically the condition that is the "virus theory" we were all hoping for.  When I read about this condition, it said that it could be caused by a virus or immunization.  I received a flu vaccine 18 days before I noticed the slurred speech, which is within the window of how long it takes for ADEM to occur.  I thought, "Surely, I would have more symptoms than this if I had MS!"  I wrote to my doctor and asked him about this possibility.  He said that actually MS can also be triggered by vaccines.  He said it is possible that I could have a mild case of ADEM (usually people with this condition have very severe symptoms and sometimes coma) but it goes away completely.  But there is no way to distinguish between the two diseases other than to wait and see if it comes back.  Then I googled asymptomatic multiple sclerosis and learned that there are some people that have no symptoms at all but find out they have MS through MRI's they had for other reasons.  These people typically develop symptoms within 5 years.  So once I read that, I started believing that maybe I really do have it.  It's probably just another blessing that I have discovered it so early on so that I can start applying dietary changes and supplementation that could help me avoid degeneration.  Because, of course, I will!  We all know what an escape artist I am! ;)

I had another MRI on Thursday.  This one was of my neck and cervical spine.  It was the worst one yet by far!  It lasted about an hour and a half! Such a long time for a fidgeter like me!  It was a constant struggle between wanting to follow the rules and not get scolded by the MRI tech and desperately wanting to shift my position a little to get comfortable. 

They did this MRI to see if there were any more MS lesions on my spine that would make diagnosis more clear.  There weren't any, which is what they expected, but they did find arthritis in my spine.  More arthritis than my doctor said he would expect to see in someone my age.  Well, that wasn't a huge shocker because I have had pretty bad back pain for the last two years or so and suspected it could be arthritis since it seemed to get worse in cold weather.  So now I have spinal osteoarthritis and multiple sclerosis!  How many degenerative diseases does one girl need?!  I think I'm going to call a truce with my doctors and tell them to keep any future diagnoses to themselves.  You know, a don't ask, don't tell policy.  I think I've had my share, thank you!  These conditions aren't great, but, don't worry, I haven't forgotten how blessed I am to not have cancer.  At least I HOPE I'm not going to get news back from Stanford saying, actually you DO have cancer!  That's the worst thing I could imagine right now.  Ever since we heard it wasn't, we've been partying like it's 1999, and going back to cancer again would be so devastating.  But, the good news is, if the spinal fluid results confirm the MS suspicion that the doctors at Huntsman had, then that pretty much seals the deal, right?  If it's MS, it can't be cancer!

Thank you to all those who heeded the call to pray for me to have MS!  It worked!  And what a blessing it is!  I am finally off of my horrid steroid medication that I had to take after surgery.  I'm hoping the puffiness in my face will quickly subside now that I'm off of it.  I also got to go back to my workout studio.  I did my first strength workout on Thursday.  It felt so good to do something challenging and strengthening like that!  I went again on Saturday and now I am enjoying the feeling of sore muscles.  I'm really pleased that, though I've definitely lost strength, it didn't feel like it was the first time I'd ever worked out, which it sometimes can after a break.

My mind is totally flooded with information right now.  I'm reading and researching all day long. And now, I have to add arthritis onto the list of conditions to heal.  In addition to the recent stuff that has been going on, I have been dealing with some kind of hormonal condition for about seven years, ever since Elyse was born.  I have not been able to get pregnant ever since then and I also have been unable to lose any weight under any circumstances.  When this whole thing started, I was hoping that it was all connected somehow so that we could treat it all at once, but my doctors don't seem to think there's any relation.  My Dad doctor, however, thinks that it is highly likely that it could be related considering that my brain lesion is very near to the pituitary gland and hypothalamus which are responsible for fertility and metabolism.  I may never know for sure, I just wish I didn't have to research 75 different conditions in the search to heal whatever the heck is going on with my body.  I'm 35 years old!  Why am I breaking down?!  And to those of you who are wondering, yes, I have been down the roads of thyroid, bioidentical hormones, and PCOS.  Still no answers.

I'm confident that I will find the answers and solutions I need.  That will be my new journey.  So glad I'm not starting my third week of chemo/radiation right now and that my hair is starting to grow back instead of starting to fall out!  I have a whole half an inch right now!



I have, however, just realized that this huge scar down the middle of my head is always going to show and mess with my hairline and fringe even when my hair grows back.  And I'm also getting sick of wearing hats.  If you think it's hard to find a flattering outfit to wear every morning, try finding the outfit AND a hat that matches it!  Small price, I know.

My speech is so much better now!  And I feel like I've gotten most of my expressiveness back.  That's good news, because that made me feel really awkward.  I still have to concentrate a little when I sing to hit the notes.  I expect to be completely back to my old self by the first of March.  That's amazing considering that I could be relearning to walk and feed myself right now.


When Joseph was younger, he wasn't progressing with reading as quickly as I wanted him to.  It wasn't until I started having him read aloud from the scriptures every day that he finally got it and took off with reading.  Because of this experience, I started Elyse right away reading out of the scriptures and she has been the quickest of all my children to learn to read fluently.  And you can tell from the picture above that she loves the scriptures, too :)  When I was having trouble speaking, I thought about this and thought, "The answer is to read the scriptures aloud."  There is so much power in the scriptures.  There isn't a problem that can't be improved by reading the scriptures. President Ezra Taft Benson once said, “It is not just that the Book of Mormon bears testimony of Christ, though it indeed does that, too. But there is something more. There is a power in the book which will begin to flow into your lives the moment you begin a serious study of the book."  I have found that to be true in my life.  I'll report back to let you know how my scripture reading "therapy" works out.  It's working great so far!  If I'm successful, they'll probably start implementing this therapy in all the major clinics. ;)

8 comments:

  1. I know you don't know me, but a friend of yours used to be my mentor. She shared a post from this blog a few weeks ago and I have read every entry since then. I am in awe of your positive attitude and the strength of your faith in our Lord Jesus Christ. So many blessings are bound to come your way. God bless you, dear. I look forward to the news from Stanford!

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  2. We have all been blessed by this experience. I hope we will stay strong, no matter what comes. We can lean on the Lord.

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  4. I've been following your story, as I met Maren and Joe through work. I've mentioned to them (so maybe they've mentioned it to you) that your demyelinating lesion could easily be an autoimmune response to a chronic multi systemic infection of Borrelia bacteria that causes Lyme Disease. Lyme mimics MS and Lyme is often misdiagnosed as MS because most doctors are not Lyme-literate. The additional symptoms you shared in this post can all be explained by Lyme Disease. I'm currently getting treatment for Lyme and so I thought I'd share this with you since it's not an easy thing to diagnose. If you need a Lyme specialist referral, let me know. Hope you are able to find the answers you are seeking about your health!

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  5. I'm glad that things are continuing on in a positive way. It sucks to be in the dark. It is a good thing that you are researching so you are better prepared to go to the doctors with questions. I hope those questions get answers. About the head scar: I can say from watching my mom heal from her brain surgery that with time, the scar will be less noticeable and that it won't always cause issues with hair style. And it's growing in pretty well, I'll do a jump for you. :D

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  6. You are truly an inspiration. If you are interested and open to alternative ideas (which it sounds like you are), I see a natural doctor who has changed my life. Every day I am amazed by how many people I meet that see her too! My husband and I have seen miracles happen in our lives thanks to her! She specializes in Lyme and infertility and while my husband was treated by her for Lyme and was completely healed in 2 months, I have seen her for a myriad of things.

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  7. Sorry I wasn't able to finish my comment without publishing it first. If you are interested, her name is Julie Davis and she works at the Utah Valley Health Clinic. Her title is, "nutritionist" but she is way more than that. If you have ever seen the show, "House," she is like a real life version of House. The number is 801-374-5677. She is pretty popular so she books about a month in advance out right now but I promise you she is worth the wait. Good luck with everything, I cannot tell you how many hours I used to spend researching my symptoms trying to agree with what doctors would tell me when it just wouldn't sit well with me. When I met Julie there was no more guessing, she could tell me in less than 10 minutes what the root of my problem was. I wish you the best!

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