Saturday, September 5, 2015

This is a repeat post...actually was first posted on July 24 2015, but accidently deleted it.  here it is again. 

The Sjogren's Diagnosis

Settle in this one is a doozy...

On April 28th, 2015 I had a name for the reasons behind the downward spiral I felt my life had become.

     I came about this diagnosis because I had some strange sensations in my right foot at the beginning of April.  I'm not very fond of going to the doctor for every little thing so I may see him once a year on average, usually for a raging sinus infection.  The thing going on with my foot however said I needed to go and not avoid it.  I kept getting this warm, wet sensation on the bottom of my foot up to and around my toes.  Like I stuck my toes in warm bath water.  It really freaked me out! So much that the first few times I took off my shoe and sock to see if it was indeed actually wet from sweat perhaps.  The feeling lasted for around 10 seconds then would disappear.  But then it would happen frequently like several times in an hour.  I thought it sounded like an issue with nerves so I made an appointment.  While I was there I figured I would point out to him this "rash" I had on my legs, from the knee down. 

     I had it off and on for about a year.  When it first appeared I thought it was a razor burn rash.  It was small little dots, sometimes in a streak like I had pressed the razor to hard against my leg.  I did everything I could think of, changed from shaving cream to soap, to a different brand of shaving cream for sensitive skin. Changed razor blades even  to a whole different style of razor.  Sometimes the rash was there just a little, but mostly there a whole lot, all the way down to my where my sock wraps around my ankle-which made it look like a heat rash to my husband.  It was so bad the majority of the summer I didn't wear shorts b/c I was embarrassed with the way my legs looked.  It continued throughout the winter but I didn't notice it as much, b/c I just don't shave as often or show off my legs, lol.  But I was just considering this may have nothing to do with shaving at all b/c sometimes I would find the dots on my feet, where I didn't hardly ever shave.  But it never hurt or itched, I figured it was just cosmetic and since it wasn't really bothering me why should I waste the money on a copay to see the doctor about something that was most likely caused by changing skin as I got older?  That's how I thought of it.   

     The doctor didn't know what to tell me.  His words where I wish I could tell you right here right now what is going on, but before I even tell you my suspicions we are going to do some blood work so I can narrow things down a bit.  No point in worrying you about something that might not even be.  (That's what I like about him, he doesn't want to send you off with thinking you may have outrageous diseases, even the scary C word, without doing his homework first.)  So I went down to the lab and got 6-7 big tubes of blood drawn, and the waiting game began.  I have an online account and could see test results as they were uploaded to my file.The next two weeks I was checking it constantly, googling constantly, on the edge of my seat as I tried to figure out what all those test were for.  So many liver/hepatitis tests and enzyme/protein tests for a range of things.  Some came back in a normal range, some were completely insane numbers. The test all pointed to some type of autoimmune disease.  The day before my appointment to see him I had figured out that I had Sjorgrens.  

     So I read all that I could in the few short hours I had and wrote down some questions for my appointment to go over the results.  I was FLOORED, absolutely floored.  I couldn't believe all these things that had gradually started happening and snowballed into my complete misery were all connected and all had a NAME! I had started to become severely depressed but my inability to get ANYTHING done.  I was so tired all the time and had been complaining to my husband about how I used to DO things.  I used to be able to work on art, get household chores done and still hang out with my family.  I thought I was just getting lazy, blamed watching too much TV, my poor diet, not enough exercise, getting older.  I blamed A LOT of my problems on getting older and allergies.  I used to get all the house cleaning and chores done that needed to be done on one day of the weekend and the next day me and my family would spend it doing things, like hiking, shopping, swimming, going to the movies, etc.  I slowed down and it started taking all weekend to get the chores done, then it started seeping into the week.  I couldn't ever be caught up enough to be satisfied.  Things were piling up. I stopped making art or posting on the blog b/c I felt like if laundry or dishes needed to be washed that had to be a priority.  I was depressed and thought my dreams were never going to come true. I was tired, and just generally felt bad everyday.  But it had become such a habit to have these periods of just not feeling well and low grade fevers that I had accepted it as a part of my life.  I had no idea what it felt like to feel well anymore because feeling bad was my normal.

     The doctor started me on Plaquenil and within 4 weeks on it I went though so many side effects it was insane.  But I was also starting to have days here and there where I felt great! I kept saying to myself, OMG this is what normal is supposed to feel like! I didn't realize how bad of a rut I had let myself fall into b/c I wasn't paying enough attention to my body.  My doctor pointed out that being in my mid-thirties isn't anywhere near being old enough to feel the way I did and at my age I shouldn't really attribute anything to "getting older" except maybe a slight slowing down of the metabolism.  The dryness issues I thought was a side effect of allergy medicine, which is true in a sense, but not the whole all over my body dryness that I was experiencing.  I'd say I prolly had symptoms of this for at least the last 8 years.  It helps explain why if I didn't have enough water that day I felt even worse than usual.  Also explains why sometimes my lymph nodes would swell up in my neck and how my salivary glands sometimes swelled up many years before.  The rash on my legs is vasculitis of the capillaries. If I would have paid attention though I prolly would have caught it much sooner.  Can't blame that on my doctor at all.

     So now here it almost 3 months after starting the medicine, and I feel pretty good.  The vasculitis is pretty much under control, but I have had a few "flares" is what they call 'em.  I feel really awful, and I wonder how I managed to keep pushing thru that on the daily like I had been.  I actually think I was pretty close to a breaking point.  I'm not a complainer, but I had begun to complain to my husband a few months before the diagnosis that something was WRONG with me.  When I have a flare my legs will break out a few days later usually.  My life is coming back to me.  I've been reorganizing things, trying to make life easier on myself. Listening to my body more and resting more.  I have an appointment with a rheumatologist in a few weeks,  Not sure what all that will entail, but I feel a lot happier now.  Slowly, I feel my life coming back to me. I don't think I will ever be what I once was, but it sure is a hell of a lot better than what I was 6 months ago!

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