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I'm chronically fatigued, and chronically nonsensical : )

Saturday, May 19, 2012

Update: blood test results back

Just want to do an update on the last few weeks. (If what I'm talking about doesn't make sense to you, look at the previous post, cuz I'm basically referencing that.)

Sleep: Sleep hasn't been quite as good as it was the first few weeks that I was taking gabapentin.  Been sleeping longer, been more tired.  Not sure if it's because it's warmer or because my normal routine was thrown off the last couple of weeks while my grandpa was on hospice, or if it's an issue with the gabapentin.  I forgot to take it last night, and I actually slept really well and got up earlyish, so I will have to experiment a little bit with that.

Acupuncture: I asked my acupuncturist last week how it actually works and she said that apart from the spiritual aspect, there are a few more scientific things going on.  It causes a release of endorphins, which are generally destressing and balancing for you, so: sweet.  Also, because you have these tiny needles in you, your body kind of has a histamine reaction against them which brings more blood and stuff to the areas where the needles are, which helps flush out old blood/toxins/whatever else.  So, I didn't research this or anything, but that's the word from my acupuncturist.  : )

And the bigger stuff:

Test Results: I went back to my new primary yesterday because she had the results back from all of the blood tests she ran in April.

Good news first: my Vitamin D and B12 deficiencies have been corrected, which means my body is actually absorbing the supplements that I'm taking and everything, so that's good.

Not so good news: I am still testing positive for Epstein-Barr virus (mono), which I had Christmas break my freshman year of college.   I also tested positive for it when I was tested four years ago, so basically my body has been trying to fight off mono for the last SIX YEARS, which is definitely a contributor to my fatigue.  My immune system actively, continuously fighting it is really exhausting to my body, aside from the actual effects of the virus.  It's definitely not like I've had full blown mono for the last six years--when I had it I was SUPER SUPER sick, I lost ten pounds in a month cuz I couldn't keep any food down, I had a really high fever, really sore lymph nodes, etc.  I'm not like that now.  However, of the two proteins that show up in an Esptein-Barr screen, I have the one that shows up at the beginning of an infection, not at the end, so it's definitely still active.  We don't think I'm contagious--I haven't given anyone mono that I know of in the last six years, even with all of the food and drink sharing and the 3 boyfriends that I had in that time frame, but I will try not to double dip/food&drink share from now on.  Help me be mindful of this!  (And if any of you think that I actually have given you mono at some point: I'm REALLY sorry!)  Oh, and since it's a virus, there's nothing we can really do about it.

News that might eventually end up being helpful but that I'm bummed out about for the time being:  The other test that came back positive was an ANA-cascade, which screens for auto-immune disorders (where your immune system is attacking your own body as if it's foreign).  I was positive for RNP antibodies, which attack your connective tissue (things like fat and cartilage that are part of the structure and support of your body).  I'm pretty not excited about this idea.  There are over 200 different types of connective tissue disorders, that range from things like rheumatoid arthritis to lupus.  It could be a major contributor to the symptoms I've had for the last four years (though I'm not sure at this point if it's an underlying cause or actually what had previously been diagnosed as CFS--I was tested for rheumatoid arthritis about 5 years ago because I was having trouble with my knees and lupus 4 years ago when I first presented with the unrelenting fatigue, so I don't know if what's showing up now is something newer or if they were different tests or something).  I will have to be referred to a specialist (rheumatologist) and have more tests run to determine which actual disorder it is, but my doctor did feel that whatever I have should actually be treatable (unlike CFS).  I, however, am not so quick to jump on that hope train.  Ok, to be fair to my doctor, she told me, "DO NOT GOOGLE THIS," because we really just don't have enough information yet, but of course I did.  And as far as I can tell, the top three things that they generally use to treat these kinds of things I might not be able to do because of other issues I have, like Factor V Leiden and wanting to be able to have kids.  If that's the case, I'd kind of rather not know about it than have one more thing that we can't really do anything about.  And I think it will probably take at least six months to get in to someone and get all of the tests run and everything, which is a bummer.  (And though I'm going to ask to switch, apparently the doctor that I'm currently being referred to doesn't believe that CFS exists, which is not a conversation I am emotionally prepared to have with a doctor that I'm hoping will help me with it.)

BUT: maybe there actually will be treatments that I can do, and maybe it will be really helpful.  I'd rather not get my hopes up too much, but I know there is that possibility.  Regardless, there's one way that an autoimmune diagnosis could be really helpful: in qualifying me for disability.  CFS is really challenging to get qualified for disability because there isn't a specific diagnostic test, but there are for autoimmune disorders.  I was too young when I originally got sick to be eligible for certain types of disability (as in, I hadn't put enough time into the tax-paying workforce), but there's at least part that I might qualify for.  Which would be really really helpful, as in all reality it's entirely possible that I'll never be able to work a full-time job.  I haven't given up that dream yet (I am terrified of having to put strain on the lives of people that I love because I can't contribute financially), but it's definitely within the realm of possibility for me.  That's still a really hard pill for me to swallow.

That's it for now, friends.  I really appreciate all of the feedback I got on my last post--thanks for the encouragement and the responses and the sharing.  Definitely let me know if you have any questions, and thanks for being willing to share this journey with me.  I know I was more positive a few weeks ago and I'm a little more discouraged today, but: the sun always rises. : ) Please and thank you for all of the prayers and happy thoughts.

Oh! And I went to the dermatologist on Thursday to get my moles checked because I hadn't been in about 8 years, and they found one on the back of my right thigh that they didn't like, so they took it off! I know this is really not a normal thing to be excited about, but it was interesting.  They just gave me a little shot and then like, scraped it off, kinda.  I'll be way less excited about it if it comes back as being cancerous or something, but for now: I bought some Mickey Mouse band-aids for it and am pretty intrigued by the experience.

Thanks for the encouragement, Band-Aid Box!

1 comment:

  1. Aren't band-aids magical! (And not just for tiny kids.)


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