My Eyes

 Hey, Happy New Years.

This year has been a lot.  I wish I could go back and do some things over.  Not really because of regrets, but more just as I reflect on some of the happenings, I wish I could go back and get more out of certain experiences or do some of them with a little more intention or a little more trust or even with a little more peacefulness.  I'm not disappointed with this past year.  I think we did a really good job adjusting, going with the flow, and embracing our circumstances.  But it was a lot.  

I don't think this year will be as full--no graduations, no moves, no kids leaving home.  There are some things though.  One thing I am looking forward to is Will's return!  He won't have lived in the states for five years.  That's wild.  I miss him and look forward to seeing him again but if I'm being honest, I actually love him being a missionary.  I love how focused he is and he is busy, happy, motivated, etc.  I love this stage of his life.  I don't doubt that I'll love college Will and married Will and all the Will's in the future, but, this is a really good version of him and a really great experience for him so I do feel a little sad about it ending.  That is probably weird.  Also, the time is flying!  

Another thing that is on the horizon is a treatment for my eyes.  I think.  I mentioned a few posts back about how I had magically met this man who is an eye doctor and he noticed my eyes and talked about a colleague who was doing research on TED (Thyroid Eye Disease).  I was discouraged because I was going to have to see a doctor on base.  I went to see the doctor in September and he said that there was a new medication for TED that was only five years old.  He said that he could not give the treatment on base but would refer me to someone who did.  He did not refer me to the doctor that my friend recommended because he said that he used to send his patients there but no one can get into him anymore so he sends them to another doctor in the same clinic who he also likes.  I asked my friend about this other doctor and he said Dr. Jones is an A+ doctor so even though it isn't the doctor I originally hoped to see things ended up working out.  

I saw Dr. Jones in December and he said that he believes I can get the treatment. I have to be in the active phase of TED for it to really be effective.  After looking at my eyes, he thinks I am still in the active phase, which is weird, and also kind of a blessing, because the active phase typically only lasts for 2-3 years and I am past the three year mark.   

Before getting the treatment some things have to happen.  First, I have to have a CT scan to see how bad my eyes are and if I'm still in the active phase.  That happens on Thursday.  Second, I had to get some blood tests done to make sure my thyroid levels are stable and that I did have TED, which they find out by looking for the antibodies for Grave's and TED.  I got my results last night and the antibody levels were very high.  I mean, I guess it wasn't a surprise but also, still disappointing to see how high the levels were.  Third, I have to go to an audiologist.  In my discussion with Dr. Jones about the medication he mentioned that the side effects of the medication are really unpleasant.  I had done a little research about it before seeing him and he confirmed that for the duration of the treatment things would be unpleasant but in his opinion, it would be worth it. One of the side effects that is common is hearing loss.  In my research it seems like some people have permanent hearing loss.  For others, it comes back a few months later.  Some people don't necessarily lose their hearing, just get tinnitus. For that reason, I have to see an audiologist to get a baseline before the treatment starts.  Other side effects include headaches, nausea, hair loss, diarrhea, and some others.  These are apparently the most common and last the entire time of the treatment, which will last for five months.  

I have multiple feelings about it all.  I feel grateful that there is a treatment.  I feel grateful that it appears I'm still in the active phase even though I shouldn't be anymore.  I feel grateful that the doctor on base could refer me to this doctor and that I happen to live in an area where there are doctors who do this treatment.  I also feel really sad and really scared.  After my visit with him I came home and cried.  If all of the tests confirm I am eligible for the treatment and insurance approves it, then for five months I can count on feeling pretty gross.  I'm really scared that I'll trade eye problems for hearing problems.  What if I'm in the group of people who doesn't get their hearing back?  Also, how long will the side effects last after the treatment?  Some of my research showed that for some people, they had to do a second round and for others, it only lasted a year and a half.  What if I fall into that group of people?  There are a lot of unknowns.  I don't feel like I can reject a treatment that can help me for fear that something bad might happen.  I also just feel really, really sad about it all.  I feel angry and sad that I'm in this position where I have TED and where my eyes aren't working like they should.  I am lucky because so far, I can still see. Some people go blind.  I feel like it's important for me to feel grateful that it's not as bad as it could be but I also hate telling myself, "At least...".  Even if it isn't as bad as it could be, it's still bad and it still causes me distress and sadness.  I don't want to go through these treatments.  They sound awful and I feel scared about how it will make me feel. Dr. Jones said to me, "This is a really rotten, sad disease."  I appreciated his validation.

I'm assuming the tests all show I'm eligible and then hopefully my insurance will approve it.  If it all works out, I'm guessing the treatment will start in March.  So, maybe all spring I'll just hunker down in my house and live in a world of quiet and poop, literally, with hair loss and headaches sprinkled in there for good measure.