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Autoimmune diseases bring a whole different set of problems. There's no reason to try and deal alone. Why not be in it together?
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Thursday, March 27, 2014


I went to dinner with a friend tonight and we were just chatting about life.  This is a person who is also my manager, and has had to make me leave work sick before (because "supposedly"  throwing up isn't "normal" and doesn't "just happen".) I was telling her about the time I got food poisoning from sushi but tried to go into work anyway, because "you know in the morning you just feel really sick and pukey but it gets better later on in the day?" And she was just like "... no. No, that's not... No."
As if normalcy was relative or something.

Wednesday, March 26, 2014

My tombstone will read "I told you I was sick."

I got sick.  That is such a surprise, isn't it?  I'm sure it was to my family and friends who probably never tire of hearing the words "fever" "pustules" and "antibiotics" after my 28 years on this Earth.
It wasn't any big thing, just a fever with sinus pressure, swollen lymph nodes in the throat, and those beautiful white pustules on my tonsils.  Easy, peasy course of antibiotics to cure strep and sinusitis.  Great.

Image courtesy of Shutterstock
Except that after my 5 day dose pack of azythromycin I still had a sore throat and was having trouble breathing.  I have asthma but my inhaler wasn't helping.  After a sleepless night I called the doctor's office and told them what was happening- no fever at this point.  They called in another antibiotic to kick whatever it was to the curb for good. (I would also like to note that this is the end of March, officially the beginning of spring.  This is my first spring living in the Midwest, which I know means I am being exposed to new allergens my system might not be used to fighting.  I am fully aware that these symptoms could also be just allergy related, which is probably why these questions are swirling around in my head.)

See the thing is, I am treating with a biologic, Enbrel, injected once a week, which- I'm sure many of you know- suppresses the immune system and makes you more susceptible to infections, especially of the respiratory system (I'm guessing because that is what we are most often exposed to in daily life.)  And since I work at a doctor's office, I come into contact with about 30+ strangers per day.
So this second round of antibiotics raises the question very prominently in my head of over exposure to antibiotics in general.  See, here's the thing: I'm only 28.  This is a life long, chronic illness, who's drug therapy usually involves suppressing the immune system.  I have a LOT of years left on this Earth which means a lot of years of immunosuppressants, which means a lot more respiratory infections to look forward to.

Every time I have to take an antibiotic, aren't I bringing myself a step closer to developing A) an intolerance to the drug and B) the likelihood of allowing a resistant strain to take hold in my system?
Do you guys ever worry about this?  What is the long term implication of my being treated for constant systemic infections as a result of my drug therapy?  Do I have to worry about the future, about being a non responder to the commonly used antibiotics?  How do you approach this kind of thing with your doctor?  Do you try to find a happy medium between treatment and deferral?

I'm interested to hear what others have to say about this!  Maybe I'm just over thinking things.  Or, maybe you've addressed this with your doc and have good advise for the rest of us.  Let us hear it!

Saturday, March 15, 2014

Long, hard, night

It is 12:46 AM my time and I can't sleep.  My joints are hurting like crazy, probably because of weather systems but who knows really?
I'm frustrated, and I want to share that before the sleeping medicine I begrudgingly took, finally, kicks in and I can fight my way to sleep.
I was diagnosed in 2008, that's 6 years of treatment with each passing year worse than the one before it. This year I finally pushed to begin a biologic and have been blessed with the results that golfer promised me, to a large degree.  However, 2 weeks after a corticosteroid injection at the doctor (kenalog) I still find myself having gotten 0 sleep this week thanks to pain.  I'm tired of the Xanax, the Ambien, the Tizanidine, and all the other "sleep aids" that put me to sleep most of the time but cannot keep me asleep through the pain. 
I become irritable, and impossible to live with, I am sure.  And even with the huge leap of progress Enbrel gave me, I still find myself miserable most of the time and dosing out prednisone on days I know I need to power through. 
It's a defeatist kind of night for me, but I know that there will be better ones. 

Wednesday, March 5, 2014

I love makeup

 I love makeup.  I mean, if something bad happens during the day, I want to go and buy some nail polish.  If something really good happens, I want a nice $50 eye shadow palette.  Lip gloss can fix about anything.
I am a whore for makeup.
I own basically all of this.
And everything behind the camera guy.
So it becomes rather a point of irritation for me when I wake in the morning- as exhausted as if I had stayed awake to watch the paint dry in our guest room- and have lost the ability to give a fuck about putting on the $20 eyeliner or the $50 eyeshadows.
Same goes for when I wake up with fingers that look like they've been carved out of playdough and I
know that this is not going to be the day I wear eyeliner at all.  Unless the look our office is going for is "Ke$ha: the Next Morning."  I'm almost positive they are not.
So I have ALL      THIS    MAKEUP   and never feel up to using it.  But I want to so badly.  I want to try new styles of eyeshadow.  Different colors.  New highlighters.

But instead I'm sitting there with heat and cold packs on my joints stretching my fingers to try and make them type ready by the time I get to work.

How fair is that?

Saturday, March 1, 2014

The little victories...

May as well be the unending stairs from
Super Mario 64.
... Are what make the world go 'round.  I think plenty of you can relate to this sight: and there are days when you are as intimidated by it as I am.  After a flare, an injury, or just a plain shitty day this is easily the last thing I want to frickin' see when I get home, but until I can afford a personal elevator, or an Acorn chair lift for my apartment complex, I have to deal with it to get to the meds and the bed.  But, it isn't necessarily a bad thing.  I had a rheumatologist tell me that he would like me to live on a second floor for as long as possible because at the least I knew I would get exercise that way.  In other words, even if I feel like hell and can't work out- my joints still get some range of motion practice just getting home from work.  It isn't much, but every little bit helps.
What little bits do you add to your day to keep you in shape?  Do you park farther away, or get off the bus one stop early?