What I Wish I Knew When I Was First Diagnosed

What I Wish I Knew When I Was First Diagnosed

The beginning of any journey in life is the most crucial place to set the direction the path will take. Childhood is an important stage to teach manners, responsibility and respect. Even the beginning of a song can make someone change it or leave it.

Diseases work the same way, for the most part. When one gets diagnosed with a rare illness, their whole  life can change right before their eyes. The planned path vanishes and you begin to blindly walk a new course. As you lay down the new bricks for the foundation, it is common to feel:

  • Overwhelmed
  • Depressed
  • Defeated
  • Isolated
  • Uncertain

These feelings are normal, and it’s OK to feel this way. But you are the captain of your ship, and despite rocky seas, you have to steer it as best as you can. This is the life we were given and the longer we question the destiny, the longer it takes to make a plan of action.

Scleroderma is a scary disease to be diagnosed with because the very first thing the doctors tell you is there is no cure. The words echo repeatedly in your mind as the helpless fear rises up in your chest, spilling out into endless tears. It doesn’t have to be this way!

In some cases, scleroderma can be treated to slow the progression of the disease. Every person progresses differently, but an early diagnosis can be important to preventing further damage. Here are three extremely important actions to take if you are a newly diagnosed patient.

  1. Gather a team of doctors familiar with scleroderma

A rheumatologist is a good place to start. He or she can prescribe medications such as immunosuppressant’s, NSAID’s, chemotherapy, or biologics to try to slow things down. Some medications may cause unpleasant side effects, so trial and error is necessary. Although not fun, it can help save your life. Once you find a treatment plan that agrees with your body, you are on the right track.

It also is important for the rheumatologist to order an echocardiogram and pulmonary function test, to make sure your heart and lungs are working properly. If there are significant changes in breathing, they should refer you to a pulmonologist or cardiologist. Often the digestive tract is affected, so a gastroenterologist should be seen. I call the doctor’s office and ask the nurse about the physician’s  experience with scleroderma, and decide from there to make an appointment. The Scleroderma Foundation website is a great place to find local support groups and scleroderma medical centers.

  1. Exercise and healthy eating

This will help you become strong in the war against scleroderma!. With a disability, inactivity increases tenfold because, most of the time, your whole body hurts. Staying active is what’s actually going to keep the blood flowing, fight insomnia, and keep your muscles from weakening. Find something you actually enjoy doing.

My exercise is walking and doing light stretching through chair yoga. If you have a lot of skin involvement, talk with your doctor about physical therapy, And stick with it. I stopped going and I regret it more than anything, because I can’t lift my arms up or stretch my fingers. Once the damage is done with scleroderma, it’s almost impossible to reverse.

If you are finding yourself with heartburn or difficulty swallowing, it can help to avoid certain foods that cause inflammation in the body. It’s easy to make excuses for ourselves because we are sick, but we have to dampen scleroderma’s fire, not feed it! This will require you to do some research and become aware of the nutrition facts of foods and beverages and make a conscious decision if you should eat it or leave it.

  1. Strengthen your mind

Believe in yourself. Believe in the treatments you are receiving. Believe in the power you harness deep in your soul. When I was diagnosed in 2010, I was dating someone who told me I was going to conquer anything this disease threw my way — as I watched myself deteriorate. Now, I tell myself almost every day that I am strong, beautiful and healing, despite my deformities, and I 100% believe it.

You are going to be your own best friend in this battle because those around you will never understand what you’re going through. Once you get your mind right, you can overcome everything thrown your way. Don’t hold in what you’re going through, in fear of offending others. Sharing your trials and triumphs will allow those around you to see what a true warrior looks like.

These tips are meant for guidance through the beginning diagnosis of scleroderma. As a seven-year scleroderma veteran, I wish I knew then what I knew now.

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Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to scleroderma.

6 comments

  1. Illges S. Faron says:

    Number 1 is easier said than done. I called a doctor’s office for a new patient appointment. The person asked which member of the practice (dermatology) I wanted to see. I asked for “the one with the most experience with scleroderma.” She conferred with those in the background, then said, “Oh, then you want a lady doctor!” 😀 Most doctors — except those in the large cities — have never met people with scleroderma because it’s rare! :'(

  2. Kathy says:

    Thank you for sharing your experience. I was diagnosed in June of 2015. You story sounds similar to mine in how I felt.
    Research your Doctors and dont be afraid to be an advocate for yourself and ask questions! Keep a positive attitude but dont be arraid to vent your feelings to people close to you.

    Kathy

  3. Karen younce says:

    I’m so glad to have a support system online ! Thank you !!
    I have seen several rheumatologists and no one will treat me! I have good healthcare. I even went to Cleveland clinic !!! The 3 rheumatologists I seen referred me to a neurologist for my peripheral neuropathy ( which was my initial presentation ) my blood work is positive for Sjögren’s and Scleraderma SCL 70.
    So then I seen a gastrointestinal dr who confirmed my GERD of 7+ years had scarred my esophagus and I had rings around my entire esophagus all the way down. They stretched it. Biopsied and confirmed I have Scleraderma still the Cleveland rheumatologustvtefuse to diagnose me or treat me

  4. Chester says:

    Awesome article Jessica! Very informative and important for all people with sclero to read! Love your strong overcoming anything mentality, KEEP IT UP!!!

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