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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!

Saturday, May 5, 2012

Doctors, doctors everywhere : )

Haven't updated in FOREVER, but I've made a lot of progress so here we go.

I'm currently working with several different doctors, so I'll run through what's going on with each one.

General Health

Hematologist: Along with the genetic clotting disorder Factor V Leiden, I previously had low protein S, which can also increase risk of clotting.  In my bloodwork this year my protein S was back within normal range, so that's exciting.  I take a baby aspirin daily, but otherwise don't really need to do anything with this at this point (I could need blood thinners in the future for things like surgery or pregnancy).  Our major concern last year was getting me off of the birth control patch (which I was using to help with my extremely painful menstrual cramps due to endometriosis) because any kind of hormonal treatment can also increase the risk of clotting, which brings me to...

Gynecologist: In Decemeber 2010 I had an abdominal laparoscopy in order to ablate any endometrial growths we found.  They found two, but unfortunately it didn't do very much to relieve the pain.  I was given Percocet to take while having cramps (a step up from the Vicodin that I was using previously) and faced with deciding how to proceed from there, since taking Percocet several days a month makes it difficult to work (needing to regularly miss three days of work a month is not very appealing to employers).  At the moment I am on Lupron-Depot, which are monthly shots that essentially put my body into menopause, thereby helping with the pain by largely eliminating periods.  This is only a stop-gap treatment, however, that can only be used for 6-12 months because it can cause significant loss in bone density (which can be recovered after ceasing treatment).  I'm about to get my third shot, which means I am trying to figure out what to do after my time with Lupron-Depot is up.  It looks like my options are both surgical: either a uteral sacral nerve ablation or a hysterectomy.  I'm not excited about either of those options, but I fortunately have a bit of a reprieve from the pain during which I can research and get medical opinions to help me make a decision.

Oral Surgeon: I have TMJ (lock-jaw) which we were working on getting a splint made for to help relieve/correct it, but that ended up not happening for now.  However, my symptoms have lessened (I was having a lot of issues with my jaw locking while eating last year) so I'm willing to wait to tackle that hurdle at another time.

Chronic Fatigue Syndrome

Cardiologist: My postural orthostatic tachycardia symptoms (feeling like fainting after eating, difficulty standing in one place for longer than a few minutes) started to recur while I was taking the medication for it (atenolol) last October, so I stopped taking the meds and they went away.  So I have been off of atenolol since October with my cardiologist's blessing and go back to check in next year!

Sleep doctor (don't know the medical term for that): I recently had a sleep study to see if there was an underlying problem with my sleep that was contributing to my fatigue.  I found out that I spend too much time in stage 2 sleep (a lighter stage) and have an alpha-delta sleep disorder in which my stage 4 sleep (delta--deep sleep) is broken up by short bursts of stage 1 (alpha--the lightest sleep stage), which leads to me having a sleep efficiency of only 69% (should be above 85%), meaning it isn't very restorative.  I have started a medication (gabapentin) that is supposed to increase the amount of deep sleep I get, and thereby decrease the amount of lighter sleep.  It is definitely helping--my average nightly sleep is now around 7 hours, down from 10-12 hours.  It's still not perfect; I have trouble falling asleep and I generally wake up at least once or twice during the night, but I am much less fatigued during the day--a definite improvement.

Chiropractor: I've been working with a chiropractor since last fall when my general headaches escalated to daily migraines.  I have three places in my back where I have weird things going on with my spine (my neck vertebrae curve backwards, my upper back is S-shaped, and the base of my spine is curved strangely) but with frequent adjustments (I'm down to one a week from the original 2-3 times a week, and should be going to every other week soon) am doing really well.  Headaches are rare, back pain is much improved, general activity level increased.

New primary care physician: My last two primary care doctors were not very helpful/engaged/supportive and were even at times rude, so I am trying a new one.  I met with her this past week and really liked her--she seems very proactive.  We don't have a plan of action yet because she's taking some time to get familiar with my history, but she ordered several bloodtests to see if there's anything helpful there (including things like auto-immune disorder indicators, abnormal muscle protein levels, thyroid function, Epstein-Barr activity) as well as testing every three months for kidney and liver function, since I am on so many medications.  She's also testing to see if the supplements I take are correcting my Vitamin D and B12 deficiencies (both of which affect energy levels). I'll see her again in a few weeks to see where we go from here.

Acupuncturist: I know the general reaction to this one it to be skeptical, but I see her once a week, and really think it helps.  I feel more calm, more rested, more energized, and more mentally clear and healthy.  If you've never had acupuncture I recommend it at least once, it's an interesting experience; I can usually feel energy kind of swirling around in me.  I really don't know how it works, but I do very much believe that there is a real connection between our soul/spirit/whatever-it-is and our physical bodies, so maybe acupuncture is somehow able to connect to that.  And if it's actually totally bogus and is just a placebo effect, at least it helps! : )

Mental Health (I'm not sure why the spacing got weird here)
I've been working with a mental health office for almost two years now that has therapists and psychiatrists in the same office so they can kind of work together.

Psychiatrist: Originally I was diagnosed with Major Depressive Disorder (MDD), and was treated with Lexapro (a selective serotonin reuptake inhibitor--SSRI), which helped to some degree (I was later to switched to Celexa due to insurance issues--that was disastrous) but I was still struggling.  After discussions with some friends, an idea that I had a few years before resurfaced: Bipolar Disorder.  In conjunction with my psychiatrist and therapist we agreed that my diagnosis was actually Bipolar II.  (This is commonly misdiagnosed as MDD because while the depressive episodes are the same, the manic episodes are often overlooked because the are only "hypomanic"--for example, in a hypomanic episode, you might be hyperfocused on some activity or be impulsive or irritable, but they aren't as extreme and destructive as true manic episodes seen in Bipolar I.)  My psychiatrist tried treating with increased Lexapro and adding Abilify (an atypical antipsychotic that is supposed to amplify the effects of antidepressants).  However I was still really struggling, my symptoms actually got worse (which can happen with Bipolar Disorder when treated with antidepressants alone).  Recently, we switched to a mood stabilizer (Lamictal) and a different kind of antidepressant (Pristiq, an SNRI--serotonin and norepinephrine reuptake inhibitor) that is a kind that they sometimes use to treat Chronic Fatigue Syndrome.  And I feel: AMAZINGLY BETTER!  Not in a drug-induced euphoria kind of way, but in a mentally clear and emotionally functional kind of way.  I feel more like myself than I have ever felt in my life, more in control of my thoughts, emotions, and actions, more settled in my own bones.  With my current insurance, these drugs are expensive, but definitely worth it.  [Excuse me as I get on my soapbox for a moment: If you have or think you might have mental health issues, PLEASE seek treatment.  They are serious, potentially-life threatening medical conditions that with therapy and (if necessary) the right medications can be treated.  Please, please, please: do it for yourself and all of the people that you love and who love you.  Just as you wouldn't ignore any other medical problems, don't ignore these.  You can't fix a broken bone or heart condition on your own; you can't treat chemical imbalances in your brain on your own either.  Please please please.]

Therapist: I started out with one therapist two years ago that I like to describe as the kindergarten teacher of therapists; she would draw me little pictures and talk to me in a syrupy voice--I would leave her office feeling even more overwhelmed and confused than I did when going in.  As you can imagine, I didn't see her very long (since she's been a therapist for years, I imagine she's helpful to somebody, but definitely not to me).  I started with my current therapist last May, and he's exactly the right fit for me.  He has never drawn me a little picture (thank God!) and it's kind of like talking to a patient, funny, insightful, non-judgmental friend who is very affirming and willing to call me on things--what a relief.  Even though I only see him every few weeks at this point, it's helpful even to know that I'll be able to talk to him about certain things when I do see him.  I'm glad that it only took me two try's to find the right therapist!


Work: I was working full time in a food safety lab for awhile, but it was really physically demanding and I worked the night shift!  It was really hard on me, and really damaged my physical and emotional health.  I quit at the end of February and though it took awhile to recover, I am now doing much better, and am in the process of looking for a job that better fits my needs and limitations (though my recently discovered life's ambition is to eventually be able to be a homemaker/housewife/whatever-you-want-to-call-it).  I had an interview this week that I felt good about, so we'll see how that plays out.  In the meantime, I'm doing some general office work for my chiropractor a couple of days a week.

Home: I'm living with my parents right now, and that has been great.  Nice to spend time with them, but difficult to fit all of my stuff in here!  I'm currently in the process of cleaning out and organizing the house--I love it!

Exercise: I've been doing well enough that I've actually been able to exercise some--I've been doing yoga and bike riding.  I tried a class at the gym but it was a little too intense for me.  I gained some weight over the last year due to medications/depression/bad eating habits/lack of exercise, but I'm pretty much back down to where I was before. : )

Travel: I recently went to Florida for a week with my parents to visit my sister, and actually did really well.  Because of my CFS, travel is usually really difficult for me, but I was able to be up and moving on time almost every day (only slept in one morning!).  Very encouraging.

I'm not perfect or cured by any means; I still have days where I'm very fatigued, I'm trying to figure out what kind of diet (diet as in, meal/food regime, not a thing to facilitate weight loss) I should be following since food tends to really affect how I feel, I still have some trouble with mental clarity--I carry a notepad because I'll forget things if I don't write them down and have had to do so much editing while writing this because of my frequent mind-slippy typos (please forgive any I missed!), etc, but I am doing much much better and am more hopeful about my prognosis than I have been in a long time.  I'm learning to be a much better advocate for myself to make sure I get the best care possible.

I think that's all I have for now.  Thank you for taking the time to read this, thank you for all of your love and support, and forgiveness when some of these issues make being a person in my life difficult.  Feel free to ask me any questions you might have.

If you're wondering if there's something you can do, I have two suggestions that would mean a lot to me.

1) Give blood.  Because they know so little about what causes CFS, those of us with it are asked not to give blood or donate their organs just in case it would negatively affect the recipient.  I don't like not being able to help people in this way, so I would really appreciate it if you would, if and when you can.

2) Educate yourself about my health problems, especially CFS (one of many conditions considered an "invisible disability" because the person with it can sometimes appear healthy, despite it's debilitating nature).  It's much more complicated than the name suggests and I can use all of the help I can get--it's easier for you to help me if you have a better understanding of what you're dealing with.  There's actually a controversy about what to call Chronic Fatigue Syndrome--many people consider it a "stupid name for a serious condition."  An alternate name is myalgic encephalomyelitis (which I'm considering adopting), along with a few others, but no new name has officially been agreed upon yet by the medical community because they still don't understand it very well and want a name that accurately describes the condition.

Here are a few links meant for those who know people with CFS that I think are a good start.