I’m Stronger Than Scleroderma
Who am I? On some days, I don’t know how to answer that question. But I can tell you with certainty that I am not defined by my autoimmune disease.
Scleroderma, my systemic enemy, is trying to destroy me. Every day it does its best to damage my body, both inside and out. Still, I won’t let it win. Today, I am “Stronger Than Scleroderma.”
Onset and diagnosis
Scleroderma began waging a war on my body in 2014, when I was 36. In the prime of my life, I was happily married and had two little girls. But one day, my hands and feet turned dark blue, and my life changed forever.
That day’s events led to appointments with specialists that eventually revealed the name of my personal terrorist. My diagnosis has no cure. Doctors can treat my symptoms, but they can’t heal me. Nor can they prevent whatever lies ahead. For someone who dedicates her life to fixing things, hearing that there is no way to get better is torture.
There’s no doubt I’ve been changed, and it’s impossible to share all of these changes in one column. This disease may not own me, but it plays a big part in shaping the person I have become.
Physically, I’m not doing too badly on the outside. My hands are tight though, leaving me with an inability to grip things or make a fist.
My mouth has shrunk, too, which has twisted my teeth and thinned my lips. My smile was once full and complete, but now, my lips can barely cover my teeth. My nose has become bony, and my skin is pulled tight. I look like I get Botox regularly — and not from a skilled doctor.
I’ve come to accept these outward changes. What I can’t accept is the internal scarring that has destroyed all of the muscles in my esophagus and stomach, leaving me with esophageal dysmotility and gastroparesis. I’m limited by what, how, and when I can eat. Gravity is my only friend when it comes to digestion.
Worse, my lungs are damaged badly enough to force me to limit my activities, a complication known as interstitial lung disease. This is caused by a restriction that leaves me unable to take normal breaths. Recently, this restriction has worsened, and I had to start using an oxygen tank when I exercise. I can endure the facial changes and the challenges with my hands and feet, but my internal organs keep me alive. Now that they are “breaking,” my life is in danger.
Which leads me to the emotional damage that scleroderma has inflicted on me. I constantly feel guilty about worrying my family. I become angry with myself when I believe I am holding my young husband back.
And of course, my heart breaks for my daughters. No matter how hard I try, I can be out of commission for days, weeks, or months at a time, making it difficult to be the mother they need. While I have the most supportive and understanding family, I can’t seem to shake that powerful feeling of guilt that consumes me every minute of this new life.
Fighting and thriving
To truly get to know who I am, don’t focus on my disabilities and ailments. My will to survive is stronger than scleroderma. I’m a fighter, and I plan on thriving on this planet for a long time.
I continue to make things with my awkward hands. I still jog — maybe a bit more slowly than I would like — despite my lung involvement. Some days, I cook dinners from scratch and enjoy large glasses of wine.
When my body is not in a flare-up, I live it up! This is something that scleroderma hasn’t — and can’t — take away from me. My life may look different, but I’m still alive, and I deserve to be.
I’m not here for sympathy or attention. I want this column to be a place where people can obtain firsthand information about scleroderma and feel inspired to fight. I also hope to raise awareness about invisible diseases like mine, and to help this world be more accepting of patients with debilitating conditions.
Join me on the journey, and I will share how I find ways to keep moving forward despite the many hurdles thrown in my path. I’ll be here to encourage you and to let you know you are not alone.
We all have our battles in life. They may look different, and our abilities may not be the same. But I believe that together, we can be stronger. Together, we can find the strength to keep fighting!
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.
Thanks for sharing this. I have this dreadful disease too since 2017. I am trying my best
Your best is perfect! Keep fighting!
Thank you for sharing!! I just now came to terms with it and saying it out loud about 5 years ago cause I didn't have ALL the symptoms my warrior mates did. Now I can and each day is a challenge!!
Thank you again!!
Amanda, everyone has a unique journey. Thank you for sharing your comment. It is a good reminder for everyone to be patient with themselves. How we each handle our diagnosis and disease can be so different. It’s important to support each other as we navigate our own paths. Best wishes to you!
Thank you Lisa for your inspiring words.
I have been struggling with crest disease and scleroderma with that involvement. I will share my story when I am ready to discuss my journey.
Only share when you’re ready! No ones journey is the same. Stay strong!
Hey Lisa keep up the fight girl I'm right there with you! I have some living to do myself! Love light and peace, Melissa
Thank you for sharing your battle. My Father was diagnosed with Scleroderma in the 70’s. There was not much to take back then. I was diagnosed with systemic sclerosis in September of this year At the age of 56 and my lungs and esophagus have been affected. I’m currently in a drug study program for the next 20 months. Thank you again for sharing and may your good days out number the bad ones. God Bless you.
Lisa I am so proud of you. Thank you for sharing your story and inspiring those around you. Your strength and determination to spread scleroderma awareness is heard!! Sending love your way!!
Thanks Lisa good advice. Everyday is a blessing so I am grateful for that.
I have had Scleroderma since January of 1999. I still work as an Ultrasound tech in a busy doctors office and every morning I wake and do stretching exercises on my hands because without them, I can't do my job. I don't let my disease run my life, I treat my symptoms when I get them and do my best to keep my Raynaud's disease at bay by staying warm. Keep fighting!
I know immediately when I get up in the morning what my day will be like.I am dressing the cold winter ahead. I love when you mentioned having a good day and living it up! I love and cherish those days and so does my husband.😀 I love those days and believe it gives us the strength to get through the bad ones.
I so feel ur pain, but we have to stay strong. I'm lucky none of my organs have been involed THANK GOD I pray everyday. I go to John Hopkins since 2016,I have a Wonderful Dr. Wth the founder of the Sclerderm Unit. Lisa u hang in there sweetie . 😊😊👍🏻👍🏻
That’s where I go too! I drive 14 hours to be seen there and it’s worth every trip! Stay strong!
Thank you for sharing your story. I was diagnosed in 2008 but now know I was having symptoms long before that. Organ involvement is now in play as well as the skin tightening. Your words have inspired me to keep moving and doing as long as this body will allow.
Ur so right. My Dr is Dr. Julie Paik. U stay strong too!!! She put me on Cell Cept n my skin showed improvement. I couldn't afford the med $3,000 a bottle n it only last about a month. I called co. n wth paper wk being done I pay 0 !!!!! Thx for Ck back wth me. Please Ck into that med,ok. Wouldn't that be GRT if it could help u too. 😊😊
Thank you for sharing! I agree- Cellcept is wonderful! I’ve been on it since 2015. I had to go though the company to get a discount too. Much more affordable now. It’s sad we have to play games and jump through hoops to get it to be affordable.
Thank you so much for your words! I’ve been struggling with this diabolical disease since 1989. I was 21. I am now 53 and the disease has slowly eaten away at my life. Just as you said, the physical and emotional losses are overwhelming. The fatigue, reflux, joint pain, loss of breath, feelings of being a burden, loss of participation in life... all add up. Over the last five years I’ve lost all the toes on my right foot, part of my left index finger and most devastatingly my husband of 22 years, who walked away.
I understand the guilty feelings but please hear me, none of this is your fault. You are doing the best you can. Your post made me weep because you get it. It’s really hard for anyone to understand unless they’ve lived it. Like the rest of you, I get up each day hoping it will be as good or better than the day before, doing my best not to be defined by my illness. Best wishes to you all.
You write so beautifully. Your words brought tears to my eyes too. You’re a fighter! No, it’s definitely not our fault. It’s hard to remember that, but so important that we don’t forget it. Keep fighting and stay strong. Prayers that tomorrow is better!
Hi Lisa and everyone else on this site. I sometimes getting teary eyed reading some comments but would like some input from all of you on Cellcept I was put on it from my reumatologist at Duke University after symtoms worsened and had to have partial amputations on 4 of my fingers. I started this medication and felt weak but continued medication. I had 3 4 episodes were my legs gave out and within seconds fell to the floor. Decided to stop med for a while. Has anyone else had this symtom on this medication?
You should definitely go back to see your doctor. If you don’t feel like he/she is listening, go to another one. I drive 14 hours to see a specialist at a clinic just for Scleroderma patients (in Baltimore). They only treat this disease, so they see thousands of people just like us. There are different medications for each symptom. Maybe there’s a better medication for you.
I’m so sorry you had to have amputations. Things get out of control so quickly with this disease. I’ll pray for you. Meanwhile, make sure they put you on a medication to open your blood vessels and go see an Hand surgeon. Before you lose anymore fingers/toes, you want to ask about a digital sympathectomy, hyperbaric chamber treatment, and medications like Sildenafil. There are also infusions to help keep the blood vessels open. Wishing you the best!
Wonderfully written on how this disease attacks our life. I was diagnosed in 2014 as well, this story hits home to all that I’m facing. A very complicated and frustrating illness, God bless everyone who has to fight it.
Hi Lisa thank you for your advice. I had 2 sympathectomy before losing my first two fingers. Also hyberbaric chamber was denied by my insurance,was also on all meds you mentioned and more. I and my doctor were frustrated with all my adverse reaction to certain medications including sildenafil. My biggest frustration now is with my esohagus. I have a great Gastro who did streching procedures and put me on acid reflux meds. Swallowing has improved somewhat. I just wanted to comment that I believe you are a great mother!! For you to take the time to comment on all our posts only makes me wonder the great things you do for your family. Lets all keep strong and get through winter,already purchased new gloves and hats to battle raynauds. Have a special day.
I’m so glad you’re getting the care you need. So many people with this disease live in remote areas, or for other reasons, don’t have access to specialists. I always try to share my knowledge in case it helps someone else. This disease is scary enough. No one should feel like they are fighting alone. Thank you for the kind words! Stay strong!
I love your advice for the newly diagnosed. For me it has been seven years but wish I had your site early on to learn about all options. In hopes this site will expand to others. Best wishes to all of you. Lorraine
Lisa, I will follow your journey from here on out. I live in the state of Idaho. I have been diagnosed by 5 different Doctors concerning my Systemic/Sclerosis / Scleroderma. All have moved on or retired. My gastric system is completely comprised, gravity also allow the liquid nutrition, I pour down my throat praying I don't choke. I have refused to give into this beast & what it continues to throw my way. My largest issue is the Idaho Rhemotologists, repeatedly have told me they only treat skin, my GP has said she knows nothing about said desease, I have wondered, why she has not done any research. She validated the desease until one Rhemotologist who did nary a blood test, nor physical exam, called her up, after I asked the GP to do one to see if the markers were up, and actually bawled her out. Since then I have one Doc. Her, I no longer am doctor looking, in the state of Idaho. I don't have money and am on medicare advantage, not supplement. I keep trying to find a way to get to John Hopkins. The Mayo clinic in Arizona & Florida will not see me/ insurance. So I fight to get the GP to validate it is active. She now has fallen back to the , anxiety,stress, depression mantra. I am so much stronger than those words. I know they play a role, but not to the extent that 5 confirmed diagnostic tests have Of which any 1st yr. Premed could see, but in her defense, she has to follow clinic protocol, and she is influenced by her older peers. I'm 67, I have lost numerous abilities of my body. I don't give up, I try hard to compensate, to problem solve on my own. So many days I don't want to try again, because it is so hard. But if I can get up. I will go through my day battling Raynaud's now in the summer even. My systems are failing slowly so I'm lucky I keep going. I have many times had to crawl on all fours. But I will never never give up. I live on my own. I made an oath I would fight until I was no more, I would not be a burden to my family. I would not leave this earth in any manner that would hurt them worse. I live, I fight for the ones I love in my mind. Never will I let them down, and someday some how I will make it to John Hawkins or a place that knows of this beast. I will make it.
I will pray for you Lj. I’m so sorry you are suffering. You sound like a fierce fighter- stay stronger than Scleroderma! I will try to share more about what helps me through my struggles. Hopefully it can help you too.
Thank you for sharing your story Lisa. I was diagnosed with terrible disease in 2017, and have been on Cellcept. It has helped. I am a caregiver to my husband who is a stroke survivor & there are many days I find it so difficult to get myself out of bed. I am loosing function in my right hand, which is very much claw like along with tightness in face & feet. Your story is very encouraging!
Wow Marybeth! You are so inspiring. To have this disease and be a caregiver to your husband- that must be so difficult. You are amazing! Stay strong!
To everyone following Lisa and her story lets all be strong together for 2021. When I feel overwhelmed with this disease silly as it sounds I buy myself something cute candle new warm gloves or just hug my dog. I bought myself some cute cards and write some notes to friends or family.keep as busy and do not be afraid of naps when needed. Look forward to summer and sunshine!!! Lorraine
Lorraine, I love your positive light! Hugs!