My name is Michelle and I am 36 years old.  I was diagnosed with Sjogren's Syndrome 8 years ago.  Looking back now, I see that my Sjogren's Syndrome symptoms started years ago when I was a child.  I remember when I was little, my hands would get so dry that I would put them in my mouth to keep them wet.  I used to get into trouble for doing it, but as soon as my parents would look away, I would shove them in my mouth again.  My hands would become so dry and my skin would become so tight that at one point I couldn't even straighten my fingers out.

     Anyway, jumping to my mid-twenties, I became pregnant at 25 and noticed problems early on.  I had terrible vaginal dryness and my now ex-husband and I didn't have sex the entire time I was pregnant because it was too painful.  After my son was born, my serious Sjogren's symptoms began.  I suffered from dry eyes, dry skin, dry mouth, bouts of pleurisy, extreme weight loss, sores in my mouth and nose, joint pain, sinus and yeast infections that never seemed to clear up and, of course, the dreaded fatigue.  At first people were telling me how great I looked that I had lost all of the baby weight, but eventually when the weight just continued to come off and I began getting pale and worn down looking, people became concerned - no one more concerned than me.

     Before I became pregnant and during my pregnancy I had so much energy - I cleaned the house every Saturday (including scrubbing and waxing the floors) and I was a total neat freak and was constantly cleaning the house.  I exercised and took care of myself and I even did aerobics six days a week until the last month of my pregnancy (and only because I had pre-term labor and the doctor said I had to!).  Then, suddenly, it was like I came down with something and it just never went away.  I remember thinking that if I could just get some rest I would shake it off and I would feel better and then I would jump up the next morning all bright and cheery and I would start getting things done and be back to my old self.  But no matter how much sleep I got or how much I tried to rest, I never, ever got to feeling like my old self again.

          There were nights where I would literally cry in the car on the way to pick up my son at the daycare after work because I knew how much work I had ahead of me at home and all I wanted to do was crawl into bed and rest.  I would be so tired that my entire body would literally hurt.  To make matters worse, my ex-husband was no help at all around the house.  He didn't take the lead on making dinner or taking care of the house or the baby or anything.  And then, when you combined my health, a new baby and house, and a husband that didn't do anything (and the subsequent resentment towards him for not doing anything)....well, let's just say that I didn't have the most pleasant disposition.  Which then, of course, would lead to fighting.

     At the time I felt like I was going crazy.  Here I was a young mother with a beautiful baby son, a nice house, decent job, nice husband (though lazy) and I was complaining.  And then the quilt of wanting to crawl into bed rather than take care of my son - that was the worst.  I was convinced that I was the worse mother and wife on the planet.  So, not only did I have the physical problems, but emotional ones as well.  Just on and on and on.

     I went from doctor to doctor and no one seemed to know what was wrong with me.  Eventually one doctor told me that it was the "baby blues" and put me on Prozac.  I told her that I wasn't depressed, I was just SO TIRED.  But she just gave me a patronizing smile and sent me off with my little sample of anti-depressants.  I remember crying in the car at the doctor's office because a professional basically just told me that it was all in my head.  So, I took the Prozac and, of course, it didn't help my fatigue.  It just made me not care that I was so fatigued.

     Eventually I just felt worse and worse until in the middle of the night one night I woke up and could not move at all due to hypo-kalemic paralysis.  I was in the hospital completely paralyzed and eventually was put into intermediate care because they were concerned that my heart would stop.  It was terrifying.  They gave me potassium in an IV and it went away, but no one could figure out what had happened.  I had a spinal tap and every neurologist in the hospital in to see me and no one could figure out what it was.  I went to kidney doctors - nothing.  I felt even crazier.  I had been paralyzed, so it was pretty apparent that it wasn't just in my head.  But still no one had an answer.  They just sent me home.  At this point I was nearly a skeleton and was so weak and fatigued I could not do anything.  But eventually I got a little healthier and stronger, went back to work and everyone acted like it was business as usual - as if it never happened.

     Then one day my primary care sent me to a Rheumatologist who immediately said that it was Sjogren's.  I didn't know whether to cry or to kiss him - someone finally had an answer!  He started me on Plaquenil and potassium supplements and I started getting better and better.

     So here I am today - 8 years later - with a ten year old son and a new man in my life and things are going pretty well.  It is still a struggle every single day - I tell people that on a good day it feels like I am coming down with a cold or the flu, and the bad days are when it feels like a hangover or a bad bout with the flu, and then we don't even want to talk about the worst days.  And I haven't decided yet which is worse, the fatigue or people looking at me like I am making it up because I don't have any obvious signs (hair loss, cane or wheelchair) - probably the fatigue.  I still work full time and I have FMLA (which is a blessing - please, if you can, get FMLA).  I was having harassment problems from my former director and the benefits manager at work for missing days (even though I had plenty of time to use), but then discovered FMLA and most of the harassment has stopped.  The benefits manager still tries to make the process as difficult as possible, but thankfully the law has kept her from affecting my job.

     The emotional strain is still there.  I still feel like an inadequate mother because there are days where I am in bed all day and can barely function and my 10 year old pretty much has to take care of himself.  I feel like an inadequate woman because I don't take care of my house and my son eats a lot of fast food rather than a healthy home cooked meal.  I feel like an inadequate mate because much of my spare time is spent in bed resting rather than spending it with my boyfriend.  I feel like an inadequate employee because, even though I run circles around people when I am there, I am too often not there.  But worse is that I feel like an inadequate human being because I just can't keep up with the rest of the world.  I still get my hopes crushed when I get to feeling really run down and go to the doctor only for him to say that it is just a part of having Sjogren's and there is nothing he can do.  And I still go to bed every night thinking that if I could just get some extra rest......

     However, though I have come to the conclusion that I will never feel like my old self again, I am learning to love my new self.  I have learned not to worry about the dishes stacking up or the laundry overflowing or the bills mounting or the harassment from the benefits manager when I can't make it in to work - I just don't have the extra energy to expend on that stuff.  I spend what energy I have on getting through each day and I take each one as it comes.  I've learned not to expect to feel better each morning, but to be thankful that I don't feel worse than I do!  I get stuff done when I feel good and rest when I don't.  And mostly I try to spend time with my son, friends and family having fun and having a laugh or two because THAT is what gives me hope and keeps me going.  AND I have learned that maybe, just maybe, I am actually not inadequate but "superior" because I do a pretty darned good job of things even with this stupid disease!

     After all, if God doesn't give us more than we can handle, then apparently he seems to think we can do it!

Lots of Hope and Love and Strength to All of You!

Michelle

Story Copyright © 2007 Michelle

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