Disease Progression Stings, but It Won’t Defeat Me

Lisa Weber avatar

by Lisa Weber |

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“It’s time to start a more aggressive scleroderma treatment,” my local rheumatologist says, although I’m not prepared to hear it. She thinks we are losing the battle and need to fight back harder. But just like in the movies when the main character is given bad news, her words flow from her mouth, yet the sound is muffled, like background noise.

“It’s time to consider a stem cell transplant,” she says.

As she speaks, the thoughts tumble around inside my head. I recall a conversation we had years ago, when she told me these options would be on the back burner if needed. She told me then that we would only need these treatments if scleroderma was progressing too fast. So, I wonder, is my life dangling over the edge of a cliff now?

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Doctor appointments rarely go well these days

This is why I loathe going to doctor appointments. I always go hoping for good news and helpful treatments, but in my chronically ill world, such wishes are rarely granted. Scleroderma is good at finding ways to let me down. This news stings badly!

Bad news always challenges my inner strength. Every day, I work hard to convince myself that I’m not that sick. So, when a doctor tells me I’m losing the battle, I must suit up for the war I’m unwillingly being thrown into. Can I hold it together for my loved ones? Will I be able to find the strength to carry on with positive thoughts and a willingness to defy the odds stacked against me?

I hate you scleroderma!

I’m not ready to be at this stage of illness. My girls aren’t yet grown. My bucket list is still long, and I’m nowhere near ready to consider changing the plans my husband and I have for our future. I hate you scleroderma!

As I write this column, I keep silently screaming those words, over and over: I hate you scleroderma! It’s hard to describe the turmoil inside me, because I haven’t accepted that this disease may have the upper hand on me right now.

Holding on to my life

I’m currently back inside the tornado of my health. It’s another storm that seems too strong to weather. But if I’ve learned one thing from this treacherous journey, it’s to remember that every storm eventually will pass. I just have to hang on for dear life until it does, long enough for a clear plan to emerge.

So, I’ll grab hold of my family, friends, and faith for the strength I need to survive, both mentally and physically. I am stronger than this disease, and I’ll do whatever I need to cross the finish line I have planned for myself. I will not wave my white flag. Scleroderma will not win this war!

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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, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Bev Hill avatar

Bev Hill

I just got news last month that my rheumatologist wants to begin an aggressive medicinal treatment because my scleroderma is moving too fast! I know your thoughts and feelings about it all! I too shouted back,” I hate you scleroderma!” But I too, will not give up! I refuse to live my life in fear and hopelessness! I still make plans and live each day happy to be here!

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Janet A, Harris avatar

Janet A, Harris

I have been diagnosed with scleroderma and my rheumatologist prescribed cellcept which I have been on for seven weeks. I am told is led to my pulmonary fibrosis which I found out about a year and one-half ago. Cellcept is a slow worker and I don't even know if it has slowed down my fibrosis at this point. My pulmonogist wants me to start esbriet but I can not have both at the same time. Your thoughts?

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vickie blackwood avatar

vickie blackwood

I can feel your pain. Stay strong. I saw Drs yesterday changing all my medications that are not working, breathing is getting worse. Hope the new meds will make all better. I am sure all of us with this nasty disease hate what is going on, i had no idea a breathing problem would ever happen, we'll see, they say it is progressive, as we know. Working is good, keeps the mind off things. Best Wishes. Vickie

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Darcy Earley avatar

Darcy Earley

I am sorry that you receive bad news from the doctor. I teach high school physical education and coach volleyball (interim position until we can find somebody else qualified to do it.). I felt like I was doing well but the stress of being a head coach has caused so many issues with my G.I. system and my heart started getting afibrillation when I increase my activity. So now I am trying to figure out if I put myself in a bad position with my health. Lots of testing and new medicines to use to buy time to make it? I just want to live my life on my terms and this stupid disease has made me miss moments with my children as they make their memories in high school and college. I want to be there for my athletes and students but I feel like I miss lots of days to rest. I really hope that your medicine can be figured out to stop this stupid disease so you don't have to get a stem cell transplant but sometimes I wonder if that would be better than taking all of this medication all of the time.

Good Luck!!! You are in my prayers.

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Sheri Olshan avatar

Sheri Olshan

Dear Lisa: I'm so sorry to hear this. I follow a group on Facebook for Scleroderma Stem Cell Transplant patients titled "Scleroderma Stem Cell Pioneers (HSCT)" where questions are asked and answered. I inquired about one myself back in my early 60s but I wasn't a good candidate. I don't know if this will help you but maybe? I assume you have Diffuse disease. I have only Limited version for 45 plus years now and still doing well. It's a brutal process but could work wonders - do check it out. Love and hugs for a better future for you.

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Tracy velkover avatar

Tracy velkover

Lisa: you are in my thoughts and prayers. My mother had scleroderma and I feel for everyone who has this horrible disease. I continue to support research and hope that soon there will be a cure. Keep fighting as I truly believe a breakthrough is on the horizon.

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S Parlo avatar

S Parlo

Always a prayer away…🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻❤️

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Donna Dinkin avatar

Donna Dinkin

Sending well-wishes. I understand the challenges with this progressive disease. Thanks for sharing your journey.

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Christel Goetsch avatar

Christel Goetsch

Oh, Lisa, yet another hurdle in this life we lead which includes scleroderma! I, too, seem to get extra things thrown at me - just when I’m managing with what I already have going on! Keep your chin up, and your beautiful attitude will carry you through…

Christel

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Tobey Schwartz avatar

Tobey Schwartz

I have not heard anything about stem cell transplant. I am willing to try most anything. I don't have any skin involvement but do have an interstitial lung disease, also neuropathy and gastroparesis. I just stopped going to two of my five specialists because they did not offer any suggestions for things I could do to help improve or maintain my current status and I can see for myself what downward progression has occurred.

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