After twenty-three years of surviving scleroderma, you would think I could handle the pain better! I wish that statement was true, but it’s not even close.

I was diagnosed with diffused systemic sclerosis at age 19. It all started with my hands hurting anytime I found myself in cold weather. I visited a dermatologist and had a skin biopsy that resulted in me being misdiagnosed with Morphea.

I was told to visit a Rheumatologist, which I did and after further blood testing I was diagnosed with scleroderma and advised to prepare for the worst. Needless to say, I was devastated and confused. I began looking for more information and support.

My mom had passed when I was 14 years old and my dad was around, but not the supportive type. I had recently lost twins due to them having major heart complications and, let’s say, I was lonely and a hot mess, totally incapable of handling this type of health news. So, I didn’t, I acted as if nothing was wrong and continued to live a normal life.

Well, that caught up with me a year later when my skin began tightening and changing colors. My left hand started getting so stiff it was flattening my knuckles. I would cry everyday about the pain.

My skin was darkening at the same time my friends kept asking me “What’s wrong with you?” Some even started a rumor I had AIDS. I started hiding in my apartment and only leaving to go to work.

Then my fingertips started getting extremely painful ulcers that sometimes bled or blistered making it almost impossible for me to use my hand at all. About two years in my left hand is completely locked in a claw position.

But that wasn’t the worst of it because ulcers started popping up all over my body. So, I decided I could no longer stay in my denial state and had to start going back to the physicians for help!

After seeing my primary physician, they advised me I would need a team of physicians moving forward as they didn’t know much about scleroderma. They couldn’t treat the disease, just the symptoms like pain, lungs, heart, etc. They also told me they couldn’t help with the ulcers unless they conducted surgeries that could result in me losing my fingers.

I was terrified and alone, so I continued seeing the doctors, but started completing what I called “my own surgeries.” I would remove the ulcers to save myself from surgery. This continued for five years until my thumb got gangrene and had to be partially amputated.

I had just started dating my now husband and was scared he would leave me. Up until this point, I had no problem getting pain medication and never gave it a second thought.

Once my amputation took place, the physicians advised me that the laws were changing and I would need to visit them monthly to take a drug test and receive my pain medication. I thought that was understandable and I complied with the request.

Fast forward ten years — six partial finger amputations and a whole toe later, everything changed. Over the ten years, my kneecaps ate themselves away, along with both elbows with several calcium deposits covering 80% of my body. The pain was indescribable.

I now must negotiate just to receive pain medication. I must allow residents (students) to learn off me to not have to visit a pain clinic. This was necessary because the pain clinics refused to treat my pain with the required narcotics which resulted in many visits to the ER. The physicians felt bad because I was one patient that truly can’t be without pain relief.

So, a meeting took place at my health care facility and they created a pain contract that explained why they felt it was necessary for them to administer my medications the way they did.

I know many others are not so lucky and suffer every day because of laws created due to abuse of narcotics. What I do know is others like me need help to bring awareness to how we are suffering, and legislation needs to be created to protect us.

I hope sharing my story lets others know you are not alone! Together we can inspire change to laws so the entire chronic pain community can be protected and our voices heard.

Now at age 43, married with a daughter, I advocate daily by telling my story. I encourage others to share their journey. You never know who is listening and how you can impact the future!

Thank you for allowing me to share. Big Hugs!!