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Jennifer’s Story (Scleroderma)

Autoimmune StoryMy name is Jennifer. I am turning 34 years old next month. This is my crazy story that led me to realize the strength I have in my heart….

It all started about a year after I gave birth to my amazing little boy. I had continuous pain, which I found out was due to endometriosis and cysts on my ovaries (which I had had in previous years due to polycystic ovarian syndrome). After trying many different things, I ended up having a hysterectomy in late 2007. I had barely turned 28.

There was only one problem; after my surgery the pain continued. The doctors would write me off, and I got the whole psychobabble stuff. I had a nurse in the ER accuse me of being a drug addict. Mind you, I was not asking for pain medication. I was asking them to find out what the hell was wrong with me! Then weird things started happening to my body, and I was in CONSTANT pain (as women, we KNOW our bodies & when something isn’t right.)  They thought that since I had the surgery I should be perfectly fine. Well, guess what? I wasn’t. The only one who believed me was my chiropractor. He tested me for fibromyalgia, which they found out I do have (there are still doctors out there that think it’s a crock,  just because they can’t see something they think I must be making it up, but it’s not, and I know my daily pain). I figured now I know what is wrong, so let’s manage it. I took a turn for the worst. The skin on my right hand and fingers started to tighten (it was like wearing a wet suit ten times too small), and my fingers started to curl like a claw.  Many doctors chalked it up to fibromyalgia, so I did too.  By this point, I had pretty much given up, so I just stopped asking questions (wrong thing to do, never be afraid to get a second, third, or even tenth opinion).

Then one day in 2008, I had to go the doctor for an ear infection. I ended up seeing my doctor’s partner because he was full. My mom went with me to my appointed. At the end of my appointment my mom told me to ask about my hand’s. I finally gave in I told him, “I know that you are going to say this is probably part of fibromyalgia, but is this normal?” I showed him my hand and arm. He looked at me with wide eyes and said, “who told you that this is fibromyalgia?” I told him everyone. That’s when he told me that he thought it was something called scleroderma. He didn’t know enough about it to diagnosis it. He sent me to a local rheumatologist who preformed a test on me. Mine came back what they would consider negative, but the doctor said he had never seen such a physical look of this disease (which is still pretty rare, only 300,000 people have it in the USA). He sent me to the UCLA medical center to see a specialist. It ended up that I was sent to one of the best. He’s actually world renowned. I Googled scleroderma before I went down to UCLA, and he came up second on the search. I went down and was diagnosed with systemic sclerosis scleroderma, it’s an autoimmune disease that hardens not only your skin, but can also unfortunately harden your organs. My mom and I broke down. My first question was whether or not it was hereditary, I was worried about my son. Luckily they have not found that it is. My next question was, am I going to die. The doctor gave me the best answer ever, he looked at me and said “we’re all going to die.” He would not allow me to put a time limit on my life! He is amazing, his name is Dr.Clements.

I was immediately put on different medication. I hate taking medication, I didn’t even like taking Advil for cramps. To go from taking a vitamin to more than ten to twenty pills a day sucked. But I knew I had to.

Everything was still shaky but I was still trying to work. I started to lose strength in my legs. I had to start using a cane, I was only 29 years old at the time. I called my doctor, he immediately wanted me to have an MRI. I went back down to UCLA and had the MRI done. They found out I had another autoimmune disease called myositis. This means that basically my muscles over work themselves and my immune system tries to fight it, and that makes them not work correctly. Ironically when I was tested my doctor had told me it was positive but it was so tiny that he didn’t see it affecting me for at least ten years. He had never seen it hit some one as fast as it hit me. Luckily with a weekly IV and steroids I was able to stop using my cane.

It was just way too much for me to take in. I ended up in a VERY VERY deep depression for almost two years. I finally got help and have worked through a lot of it. Unfortunately, I did end up having to medically retire right before I turned 30. There were times I was in bed for weeks on end because of my pain, it just took over everything.

But with a fighting spirit and the will to fight I went routinely to my appointments at UCLA (which is a three hour drive from where I live). Recently I had to change two of my major medicines because my new insurance would not cover them. I changed them and when  I came home, I took my new medications, and went to bed. When I woke the next morning my pain had decreased ten fold! I actually asked myself out loud, “am I awake?” Since this change I have been doing much better. I still have “bad days” but  it is so much better than when I use to have bad months. I was missing out on so much especially when it came to my son growing up.  Now I can see the joy in his eyes when he sees me at a school function or watching him play baseball, and he gets ecstatic when I join him playing! Not everyday is perfect but my fight to live & love is. He showed me the way and I followed him.

So that’s my story in a nutshell if you have any questions please feel free to ask! Stay strong and keep the faith. Life is DEFINITELY worth fighting for!!

Submitted 6-27-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

One comment

  1. Arla

    Your journey with this disease has been nothing short of miraculous!
    Keep up the progress and the faith. I am glad to hear you are doing better.
    God bless and keep you healthy

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