Surviving As Mom

I have an autoimmune disease called Sjogren’s (Show-grins) Syndrome.  I kind of describe it like a mix between Lupus, Rheumatoid arthritis, and MS.  I was officially diagnosed at 32 years old in 2013 but I’m sure I’ve had it since I was in my early 20’s.  I experienced many of my symptoms when I was younger and was even bedridden for about 2 months.  I went to numerous specialists and endured many tests, but all I would hear was “everything is normal.  You are a young, healthy woman.  You are just stressed”.  Its not easy being told that your crippling symptoms are all in your head.  I eventually started to believe that I was actually crazy and just tried my best to ignore what I was feeling and get on with life.  I eventually started to feel slightly better to a point where I could function enough to carry on.  I had a job, I was newly married, and I was just trying to get by.  I still felt terrible most days, but I just assumed I was crazy, as the doctors insisted and I pushed through it.

Fast forward to 2012.  I had 3 year old twin boys and new baby.  After a few months, I noticed that I was feeling horrible again.  My body ached, my joints were in terrible pain, I was completely exhausted and I couldn’t figure out why.  Every time I went to a doctor, I explained that I felt “like I’m falling apart”.  Doctors kept assuring me its because I was a new mom and I was breast-feeding. I sucked it up and pushed on the best I could.  I finally stopped breast feeding my son at 13 months.  A few months later I still felt terrible.  Well it wasn’t from breast feeding so I took it upon myself to figure it out since doctors had failed me for so many years.  When I googled my symptoms of severe fatigue, joint pain, muscle pain, I came upon a few autoimmune diseases like RA, Lupus, Sjogren’s Syndrome.  I learned that a rheumatologist manages these conditions so I found a local dr and made an appointment.  After my 1st appointment, he diagnosed me with Sjogren’s syndrome.  I was so relieved because it wasn’t in my head!!  I was NOT crazy!!  Sadly, I had no idea what this diagnosis actually meant.  I had no clue how disabling this disease actually was.  The doctor certainly didn’t help to educate me on it either.  This was something I just had to learn through time and experience.

I’ve since seen 9 different rheumatologists before settling on the one I see now.  BTW only 3 of those 9 rheumatologist actually agreed with my diagnosis.  The others claim I “look too good” to have this diagnosis.  I like the one I see now.  She believes me and tries to help, even though there isn’t much to do.  

I’ve tried numerous drugs as treatment, which have all failed.  I’ve done multiple different infusions of dangerous drugs.  I’ve taken pills, and given myself shots.  I even completely changed my diet, but no success. Nothing helped, which is absolutely devastating.  Not only do I have an incurable, disabling disease, but there aren’t even any real treatments to improve my situation.  All we can do is try to manage my symptoms, which hasn’t been very successful either.  This is a chronic and progressive disease which means I don’t know exactly what my future holds.  That is a very scary idea.  I try very hard not to think of my future because it does not look good.  I can only hope that one day there will be a new treatment that is discovered.

This disease has taken a major toll on my body already since my diagnosis 8 years ago.  I now walk with a mobility aid.  At times I can barely walk at all and use an ECV (power scooter) if I have to go to the store (grocery shopping, etc.).  I don’t go on family outings because its just too much for me.  We do try to go to Disney World each year, but I must use a power scooter and steroids to get through.  I am mostly housebound and at times bed bound.  I currently only leave the house for doctor appointments or for rare shopping trips.  Even then I have to limited my outings to no more than 2 hours.  When I get home, I must lay down the remainder of the day.  I also pay for it for days following.  

This illness has completely changed my life in every way.  I am sick and disabled.  I am housebound and often bed bound.  I look and feel sick and I suffer from anxiety and depression.  My current life is nothing close to what I imagined it would be.  I’ve lost the person I was and the person I wished to be.  Chronic illness is absolutely devastating in every way. But, I am trying my absolute best to remain positive and hopeful. I use mindfulness to try to find happiness in each day however I can.