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Cheri's Story

    I will try my best to break this down and make it as simple as possible, but if you are going through what most of us have gone through you know it's not simple.  My name is Cheri, I have 4 children of my own and 4 step children.  I just turned 38 and feel 83 most of the time :-)  

    When I was a small child, I would wake up at night crying with pain and was told it was growing pains.  When I was 18, I started getting a rash in the sun.  When I was 21, I was told I wouldn't be able to carry a child to term because of uterus problems.  In my 20's I would go through stages of rapid weight loss, fatigue, and pain.

    After my 2nd child was born they removed fibroid tumors and my symptoms got a lot worse so I decided to find another doctor.  This doctor told me after our first visit that maybe I should find a job outside of the home.  On our second visit I informed him I had a part time job outside of the home and I want to know why I always have pain, fatigue, and weight loss.  He ran a lot of tests and told me I should read up on SLE (Lupus) because that's what he thought I had.  One of the tests was borderline so for the time being he diagnosed me with CFS (chronic fatigue syndrome).  I went on my merry little way with no help.

     My third pregnancy was different from the others.  I didn't gain as much weight, around 4 months started bleeding, but made it to the end of the pregnancy to have my third son.  I have lost 6 children any place between 1 and 6 months.  

    About 5 years ago I started having lung and kidney problems.  I was diagnosed with chronic asthmatic bronchitis and had pneumonia many times for which I took steroids.  For the kidney infections, antibiotics.  I would come home from work, a single mother then, in tears because I hurt so bad.  

    I remarried 3 years ago and told my then future husband the doctor told me he thought I had Lupus but for the most part I had gone untreated because he wasn't sure.  We had many stresses in the beginning of our marriage and the more stress the sicker I got.  It was around this time I remember having a bad taste in my mouth from time to time and my tongue would kind of burn.  

    We relocated and I found out I was going to have a baby even though I was trying to prevent that :-)  This pregnancy was much like the last but I gained even less weight, was very dehydrated, and started bleeding at around 4 months.  The reason I'm telling you all of this is because I think it's all related to the Sjogren's/possible Lupus.

    My 4th child, a daughter, was born with Trisomy 21 (Down Syndrome) and heart problems which she had open heart surgery for.  Some of her problems and my youngest sons problems are now thought to be related to the placenta.  At this time my youngest son is being tested for Mosaic Down Syndrome, meaning at some point of separation he would have 47 chromosomes rather than the normal 46 through out.  I am adding this in my story because most females are not diagnosed with Sjogren's until after their child bearing years.  

    If Sjogren's affects the glands, the ovaries and placenta are glands and it's something you should talk to your doctor about if you are considering having children.  If the disease attacks us, why wouldn't it attack the child we conceive and carry?  I wouldn't trade our only girl out of 8 and I wouldn't trade my youngest son either but it has made life a lot more challenging.

    Now back to me :-)  After the birth of my daughter, I had a flare that just didn't go away and in March my brother was killed by a drunk driver.  STRESS!  By the end of that week I had to go to the hospital for an infection of the lining of my kidneys.  I found a Rheumatologist and a Pulmonary specialist that diagnosed me with Sjogren's.  I am not taking steroids at this time and want to avoid them if at all possible.  The doctor told me out of all the auto-immune diseases I could have, Sjogren's is one of two that are the hardest to treat, the other is Scleroderma.  She put me on Plaquenil and told me it will take up to 6 months before we see any real results.  She said Plaquenil is great for the Lupus like symptoms but doesn't seem to do as much for Sjogren's.  I have been taking it for about two months now and for the last two weeks I have a little more energy and I haven't needed my husband to help me out of bed on those bad days.  It does seem to be helping the Lupus like symptoms but the Sjogren's symptoms are worse.  

    I have neuropathy that has gotten worse.  My head, face, neck, back and shoulders hurt all the time now and the dryness is getting worse.  It does help to know your monster though.  At least now I know why I feel like I have a hang-over all the time even though I don't drink.  I know why my face hurts after thinking it was sinus problems that made my teeth hurt.  I know why my teeth are going bad and I know why my vision has suffered as well.  I don't think this is the end of the story for me and my doctor seems to think she will eventually diagnose me with other things, i.e. Lupus, CREST, or something of that nature.  

    My attitude is better now that I have a diagnosis because I know my enemy.  I don't have the depression I had when I didn't know what it was and felt worthless to my family.  I am fighting back with everything I have and will continue to learn as much as possible so I can help my doctors help me.  

    I have learned a lot about life and the fact that we don't appreciate a lot of little things like playing with our kids and going for walks, just simple things I could do that are now difficult most of the time.  I have to ration my energy to make sure I get the most important things done in each day like feed my kids and clean and do laundry.  

    I wish I could cry, it's really strange feeling like you are going to cry and nothing comes out.  I thought I had a real emotional problem when my brother was killed because I couldn't cry!  My eyes would water a little and then it would stop.  I have a hard time swallowing food at times and start coughing uncontrollably, that's real embarrassing at the in-laws...lol

    I want to find answers for this disease and try to find things that will help us live a fairly normal life without the side effects of steroids and such.  I've been thinking maybe I could ask my doctor to hook me up to a fluid IV once a week...lol anything, something!

     I hope I haven't gone all over the place here but I wanted to try and touch on the many ways this disease and others like it affect every part of our lives and the lives of those around us.  Thank you for reading my story.

Cheri

Story Copyright © 1999-2007 Cheri

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