Difficulties Caring For My Baby

Before diagnosis it was so hard to take care of my second baby.  I recall many times giving her a bath and not being about to get her out.  I could not lift her, and not because of my muscles, but because of the connective tissue disorder.  I recall holding under her arms and  pulling her out.  She was good for me and must have known I couldn't lift her, but she couldn't get our herself, she could barley sit by herself.

The stairs were a nightmare to climb, I usually crawled up them when no one was around.  The times when we had company, I would go up last and pretty much pull myself up on the railings, or I would just not go up at all.  I tried to move as little as possible.  If I sat still, and only moved my upper body, I was pain free.

With connective tissue disorder it is like the muscles are working against each other.  This is how my doctor explained it.  When one muscle flexes, the opposite has to relax, but mine didn't.  Every time I tried to move my leg at all, every muscle in my leg would flex, or tighten.  I found it much easier when sitting to lift my leg with my hands.  It became habit.  I crossed and uncrossed my legs by lifting my leg with my hands.  My right leg was 2 inches smaller than the left one.

The baby room was upstairs and once I got her out of her crib, I would sit her on the ground and pull her down the stairs with me.  I couldn't go down the stairs while holding her, I needed my arms to carry my weight using the rails, or to go down on my butt with my baby.

During the day I had her sleep in a pack and play in our office for naps.  I only went upstairs when I had to.  I kept her clothes in my room as well.  Anything to ease my pain was worth it.

My Beginning Symptoms of Reiter's

Twelve years ago I had been happily married for 7 years, and did not have kids yet.  I was working and going to school full time.  We had a great life, I believe some people call it DINK (double income no kids).  We traveled and played often.

I started having what  I called hip pain, but now I know it was connective tissue pain.  I limped when ever moving, and hurt really bad.  I figured it was due to working out, or that I had put some kind of strain on it.

I started seeing chiropractors, and doctors, and any natural healer I could find.  No one seemed to find anything wrong with me.  I had blood tests, x-rays, cortisone shots, and whatever else they threw at me.

This went on for 2 years before I got pregnant.  Once pregnant for about 12 weeks, the pain was gone! I hadn't linked the two, but I was just happy to be pain free.  I had a great pregnancy, no sickness, no pain, no problems.  I did request from my doctor to let me take progesterone during my first trimester.  I had had three miscarriages prior and was told that this might help.  I took it and held onto the baby without any problem.

After by baby was born, I breast fed for about 8 weeks and gave up due to everything I ate caused her to SCREAM.  I never went on a all vegetable diet, but I know pretty much every time she nursed about 10 minutes later I paid for it.  Anyhow, about 12 weeks after she was born all my pain came back.  I thought it was because I had quit breast feeding, and I was sure that on my next kid I would keep nursing as long as possible to keep the pain gone.

I started my journey for a cure again, and got no where.  I lived on VIOXX which in my head was a miracle drug.  Anything that took the pain away was great.  Soon it was off the market and I had to result to Ibuprofen (which hardly worked) and what ever drugs the doctors thought would help.  I had muscle relaxers for sleeping because my back would tighten up so bad I would toss and turn, and cry nightly.  I had Loratab and helped me sleep a little.  Sleeping was miserable for me, I would sleep in our recliner often, or take hot bathes in the middle of the night and just cry and cry due to all  my pain.  I couldn't find anything that worked.

WOW just thinking back is making me cry.  All the pain I went through and nothing to fix it.  I contemplated shooting my self many, many, many times.  I thought about taking lots and lots of pills, but worried they would just make me sick and not work.  The only thing that kept me from killing myself was my sweet little baby, my mom and family, and husband who was so good with  me but knew he couldn't help.  My baby didn't deserve for me to be so selfish.  what would she do without a mom.  How selfish could I be to take that away from her.  Here I sit crying, just thinking back on how bad it was.

Diagnosis of Reiter's Syndrome

After three more miscarriages, we finally got pregnant and started back on the Progesterone pills, and we were able to carry our second baby to full term.  Again the pain left while pregnant, and I slept great, and walked as if nothing was wrong with me.

Auto immune diseases go away while pregnant, now I know, and gets worse after each pregnancy.  I nursed my baby past 12 weeks, but the pain came back pretty much to the day.  It came on slow, and quickly got worse than it had been.  My right hip hurt so bad, I wanted to cry every time I moved.  My left knee started to swell, and had a lot of pain.  My middle toe on my right foot was swollen and looked oddly huge, and the bottom of my feet hurt so bad to stand on.  Any pressure on them was agonizing.    

The doctors in my home town took blood tests and saw that my inflammation levels were extremely high, and I was showing positive for Lupus which I clearly did not have.  I knew someone with Lupus and I did not have any of her symptoms.  They also thought I had Rheumatoid Arthritis, yet all my signs proved it wrong.  My joints never hurt once.  There was not a Rheumatalogist in my home town, so I made an appointment with one 5 hours away that my doctor had recommended, Dr. Gremillion.

Finally a breakthrough!  This doctor took my blood and examined my symptoms, and put it all in a computer data base, and lone behold my diagnosis popped up.  

Reiter's Syndrome is a rare form of Rheumatoid Arthritis that attacks the connective tissue, and is only found in the lower part of the body, and zig zags across the body like mine did.  I guess I needed every symptom in order for it to be diagnosed.