Friday, February 8, 2013

Unsurprising newsflash of the day: Life is hard.

Some days, life is harder than others.  This is also an unsurprising revelation.

Today is one of those days.  Sometimes, "one of those days" turns into "one of those weeks" which subsequently turns into "one of those months" and then if it goes on longer than that... I don't know what happens because the last time that happened... well, let's just not talk about that.


Anyone who knows me knows that I have been some varying level of diseased since 2005.  I got the actual flu (body aches, chills, fever,  my freshman year in college, right smack in the middle of first semester finals (because my immune system's timing is impeccable).  Second semester, I came back and while I no longer had the flu, I had joint pain, bone pain, headaches, fevers, petechiae, and exhaustion to the point of sleeping 12+ hours a day.  Doctors threw around diagnoses including mono, Lymes disease, Lupus, and even leukemia, but all of the specific blood work was normal.  The only things that were abnormal were my ESR (erythrocyte sedimentation rate, AKA: sed rate) which is basically one of the vaguest indications that there is inflammation somewhere in the body, and my ANA (Antinuclear Antibody) test was vaguely positive, which is the world's most subjective test for indicating that there might be some kind of autoimmune process occurring (or it could mean nothing, what fun!).  I managed to finish my semester, applied to transfer back home to Drexel, and moved home.  Over that summer, I had laparoscopic surgery to see if I had endometriosis (I did, it was everywhere, despite that all of my doctors insisted beforehand that I was insane), and I saw multiple doctors, all of whom said that despite the fact that I felt terrible, nothing was wrong with me because my blood work was "mostly normal".  Eventually, a doctor decided to treat me for Lymes disease, despite the fact that I didn't have the antibodies for Lymes, because apparently, I "had enough Lymes symptoms to warrant a treatment".  

[NB: I was told I didn't have the antibodies for Lupus, so therefore I couldn't have Lupus... but then was told that I didn't have the antibodies for Lymes, but still had Lymes... mmmkay.  Medicine, ladies and gentlemen.  It's an art, not a science.  I guess.]

So then I took a year's worth of antibiotics (I'm not kidding, I was on Ceftin and Biaxin for a year) which led to major GI upset and other interesting problems that occur when you wipe out your body's normal flora.  I also was told to avoid eating yeast and wheat, as that would only continually anger my body.  2005 was not the best year to be me.  Eventually, I was having such stomach problems that my GP at the time took me off of the antibiotics.  Surprisingly, my symptoms from before were mostly gone, so we decided that hey, I guess I did have Lymes disease, so hey, maybe that's over now.  And it was.  Kind of.

Over the next 7 years, I experienced my symptoms over and over again.  At seemingly random intervals, the joint pain, headaches, and fatigue would return, often incapacitating me for days.  I also got infectiously ill much more frequently.  I went from someone who was barely sick, barring the occasional cold or stomach bug, to someone who got 6-8 sinus infections a year, strep throat, worsening migraines, and influenza (despite vaccinations!).  Again, I made the rounds through my various doctors, all of whom said that my blood work was fine and that my symptoms were probably due to my depression, so I should just stress out less and things would go away.  Feeling increasingly like I was losing my mind, I was finally sent to a rheumatologist, who decided that I had fibromyalgia and put me on yet another antidepressant (because apparently, that is just how you treat fibromyalgia).  Of course, the drug they put me on was contraindicated to another SSRI that I was already on... so they took me off of it after a few weeks.  And magically, my symptoms were kind of gone.  So, whoo hoo, maybe it was just a random thing and now it was over for real.  And it was.  Kind of.

After a tumultuous 2008-2009 in which I had a nervous breakdown (literally) and fractured my spine and herniated 2 discs by falling out of a bathtub (this is why you are NEVER too old to have a mat in the bottom of your tub), I thought that things were going to be okay.   I still had recurrent and chronic sinus infections, migraines that laid me out for days, and pain, I figured that this was just how things were.  I had surgery in 2010 to correct a seriously deviated septum and enlarged nasal turbinates (they left the outside of my nose alone, thank you very much), and I continued to feel intermittently crappy with the same old joint pain/fatigue/headaches/fever symptoms.  My allergies, which were present since childhood, began to get worse, and I started collecting new and exciting allergies to food (raw fruits,  raw vegetables, shellfish, and nuts) and my seasonal allergies were so bad that I could barely function in the spring/summer, despite being medicated.  I tried allergy shots in college, but didn't finish the full 5 year course, so who knows if they would have helped.

Most recently, I saw a new allergist because I needed better allergy care and also had started breaking out in a rash, which was diagnosed as atopic dermatitis, but they're not sure why I suddenly have it now.  I was tested for allergies again (result: I'm allergic to ALL THE THINGS) and he sent a bunch of blood work for autoimmune diseases.  Not surprisingly, my ANA was positive and nothing else was... well, that's a lie.  I also apparently had Mycoplasma pneumonia ("Walking Pneumonia") and my IgE levels were elevated (IgE = Immunoglobulin that is active in allergic reaction... so... not surprising).  He sent me to another rheumatologist, who I saw a few weeks ago.  She examined me, sent more blood work, and said, "You kind of, sort of, maybe have a bunch of the lupus symptoms, so we'll treat you like you have Lupus," and put me on Plaquenil, which is a Disease-Modifying-Anti-Rheumatic-Drug (DMARD) and then two days later, decided that I didn't have lupus because my ANA came back negative (more on that later) and my Vitamin D and Vitamin B12 were super low, so that must be my problem (seriously?) and so she put me on prescription strength Vitamin D (50,000 units weekly) and I also started taking 1000 mcg of B12 and 2000 mcg of Biotin (to see if it helped stop my hair from falling out).  

So why am I telling you all this?  Because in all of this, if you had asked me, "Alison, do you have a chronic illness?" I would say no.  I realized the other day how bizarre that was.  I take 12 medications a day and more days than not, I feel like crap.  And yet there was some part of me that was convinced that if I didn't say that I was "sick" that it meant that I wasn't.  I think this is also compounded by the fact that I have been told numerous times over the last 8 years that there isn't anything physically wrong with me, and somewhere along the way, I internalized that as "my symptoms aren't real and I must be making them up and therefore, I am crazy".  I just kept telling myself that one day I would wake up, and I would feel better because if I wished it hard enough, it would happen.  That since this was firmly ensconced in my control (newsflash: It isn't), that I should be able to fix it and that if I continued to feel crappy, it was only because I wasn't trying hard enough to feel better.

How's that for convoluted and bizarre logic (or lack thereof)?

So Danna, my therapist, encouraged me to "make peace" with my illness.  Or at the very least, accept that I have one.  At one point, I said, "I just keep thinking that it will go away," and Danna said, "But it won't.  It's not going away.  This is how it is," and I just started crying because no one had ever just said that and it was some weird combination of catharsis to hear it and also sadness at the fact that yes, I am sick and it is not going away.  I might not have a diagnosis, but how I feel is reality.  I had this delusion that as long as I didn't say it, it wouldn't be true, but I realized on Tuesday that by that logic, I could say I was a bicycle and I would magically be one (which isn't true, in case you were wondering).  What I said or believed had no bearing on reality in this case.  In fact, accepting the fact that I have an illness might make it easier to deal with said illness.  Who knows.

And so, here I am, on the internet.  I'm Alison and I have a chronic illness.  I don't have a diagnosis yet, but that doesn't make the crippling joint pain, headaches, rash, inability to stay warm, chills, and plethora of other symptoms any less real.  

So what am I doing with this information?  I'm not sure yet.  Right now, I'm just trying to absorb that this is a part of who I am and that it doesn't mean I'm any less of a person... it just is something that I have to deal with.  Maybe (hopefully) not forever, but... for the foreseeable future. 

- A

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