As symptoms of scleroderma speak, I reply, ‘Now what?’
In my debut column, I share the hurdles I face in my life as a warrior
Yes, I’m a warrior. I was classified as one long before my scleroderma diagnosis since I’m an African American woman and single mom of two adult children. God has been preparing me to be a great warrior since birth.
Learning that I had scleroderma was a relief. The symptoms started July 2019 after six months of excruciating pain and an inability to use my hands. Amid the diagnosis and symptoms, I found solace in thinking sardonically, “OK. Now what?”
The shock was that the doctors told me there is no cure. They prescribed prednisone to help with inflammation and methotrexate to suppress my immune system.
Disbelief about my bad luck filled me. Now what?
Cataloging my symptoms
Well, my hands are extremely tight, including my wrists. My skin has become very dark. How am I supposed to do anything with such limited use of my fingers? I’m stiff as a board when I awake each day. I don’t know what body part will be targeted next.
I do all I can to take control of my day-to-day activities, but the pain and fatigue have just completely taken over. Daily tasks are frustrating because what took two minutes now takes more than 20. Worst of all, I’m a kindergarten teacher and a librarian this semester. Now what teacher do you know who can’t hold a pencil? I’d also just enrolled in a master’s program, but I quickly withdrew.
This morning and every morning, a terrible headache comes and goes from the front of my head to the back and then moves to the side. And my hands are so tight I can’t even wash myself. The clothes I want to wear have buttons, so now I have to find something that’s just a pull-on.
Oh, and I did tell you I’m an African American woman, so my hair has to be combed. But I can’t hold a comb or brush. No one can come over to help with my hair. Standing on my head has got me looking like boxing promoter Don King — but that’s cool because I’m in a fight, right?
My right foot is hurting so much I can barely walk on it. And the doctors constantly tell me I’m obese. That’s very hurtful when I already know I’ve gained weight. You would too if you couldn’t walk, your immune system was compromised, and you were on a steroid that supercharges your appetite.
Lost in these frustrations and my headache pain one morning, I began talking to myself, saying, “Oh, God, please just let me find a hat, a wig, a stylist, a neighbor to help me get it together. Laundry is falling out of the basket, the shower needs cleaning, dishes are piling up. And yeah, paper plates are great, but I could still use a housekeeper.”
Who in the world gets diagnosed with a rare and chronic disease at 55? Are you kidding me? Now what am I supposed to do?
Now what?
Well, now I have tears. So I call a friend who helps calm me through the chaotic morning. My friend tells me what I need to hear, praying and saying, “You got this, yeah.”
Warriors endure, push, fight, fall, and get back up. And guess what? I’m fighting for my life. So now what?
I put on my armor to prepare for battle, knowing each time I wake that I’ve just received another day to start this crazy routine all over again. Scleroderma is not going away.
A sclero warrior sister told me to assemble a team.
“I like the New York Giants.”
“No, silly, a medical team.”
They gave me the name of a specific rheumatologist, and I waited six months to see him. He sent me immediately to the gastroenterologist, who performed surgery two days after meeting me to treat my gastroesophageal reflux disease. I also collected a plastic surgeon, otolaryngologist, speech therapist, weight loss team (by the way, I haven’t lost a pound), ophthalmologist, neurologist, psychologist, and last but not least, an integrative medicine doctor — which has been an awesome addition.
And now what? Now I have a team. And the team is doing a great job. The battle is on, and this sclero warrior has the gloves. I even started my own nonprofit, the United for Scleroderma Foundation. (I’ll tell you more about that later.)
For a few years now, I’ve been learning to fight. In this column, I’ll share what’s working, and in the reader comments I want to hear about what’s working for you, too. These fights aren’t done alone.
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.
About the Author
MRS GAY BARTON
I was so glad to read your blog, so encouraging to read what is going in another warrior's life and journey, you go girl xxxxx
Holly Cummings
Ms. Sherlene, I very much appreciated your article because it walks us through what a typical morning is like with Scleroderma. I was diagnosed when I was twenty and I just turned fifty, and really, not much has changed. I wonder why there's been no improvement after all of these years of research? I fear time is running out for discovering a cure for you and me.
Barbara
I was diagnosed five years ago. About 15 years ago I was in Atlanta GA at a dog show. I could not get warm. My hands were pure white and painful. I could barely show my dog. My friend came up to me and you have Raynauds. Well I researched it. It is awful. 5 years ago I finally saw a doctor who diagnosed my crooked hands and proceeded with tests. Scloderma was diagnosed. I almost 81 yrs old. I have had recent surgery gor bowel obstruction and breast cancer. My kidneys are failing. I am a mess. Feet are so bad I can hardly walk. Fatigue is as daily episode. But I am also a warrior. We shall fight to the end. GOD bless you
Cindy Pickles
Sorry about your diagnosis. I have had scleroderma or CRESt syndrome with pulmonary arterial hypertension (PAH) diagnosed in 2005 even though I had symptoms for 2 years prior. Scleroderma can affect your lungs in that the pulmonary arteries that carry blood from the right side of the heart to the lungs become progressive narrowed making it harder to breathe. The heart has to work harder to pump blood thus becomes enlarged. Insist on getting a yearly echocardiogram to check for PAH. The rheumatologist knew I had a connective tissue disease but it took 2 years for labs to change to confirm scleroderma.
Also ask gastrotrologist or PCP to do blood tests for celiac disease. I read a lot and uncovered that 28% of the people with connective tissue disease such as scleroderma have undiagnosed celiac disease. My new rheumatologist when I mentioned this looked it up to confirm. My celiac was diagnosed in 2007. I went gluten free but then learned that I also had high casein level and was instructed to go dairy free. For someone who loves cheese and ice cream this was harder than going gluten free but well worth it. My hands were so swollen that when I spread my fingers they were still touching. I had some periodic ulcers on fingers. I had so much pain in my hands that my husband would tell me that at night I would sit up and just shake them. I never remembered. The pulmonologist when PAH was diagnosed started out trying me on Norvasc, a calcium channel blocker that is generally given for high blood pressure. It dilates blood vessels allowing more blood to get to hands. It did not help my lungs so he took it away. Apparently it was helping my hands so he added it back besides the new PAH medication. It took about 8-10 months of being gluten and dairy free for the swelling to go down in my hands. What a blessing. We depend on our hands so much. I still get periodic swelling which when that happens will go on a med roll dose pack.
Here are some things we did to help with the hand swelling. Bought a Colgate battery operated toothbrush. It made brushing my teeth so much easier. We changed all the door handles in the house to levers instead of knobs you have to turn. I kept my hair short as just raising my hands above my head made me short of breath until we kind of got PAH under control. Short hair requires less brushing and less time to wash and dry and fix. I also bought a pair of compression gloves. Check to make sure this is ok with your rheumatologist. He may have a particular brand he likes. I like the Isotoner full finger compression gloves. Amazon has for $17.00
I truly believe Norvasc has also protected my kidneys over the years. Hope this help.
Linda Durnan
Welcome to the fight warrior woman! Remember there's an army behind you.
Jane coutinho
Hi sherlene, my name is Jane coutinho. I was diagnosed in with CREST syndrome 2009 I had an ulcer in my finger and was in the hyperbaric chamber for 3 1/2 months. Methotrexate made me feet worse after 2 yrs. I am 59 now and my rheumatologist is not a good autoimmune doctor. Anyway I had a smaller team Not the best. My question is what is the best treatment you take on a daily for aching hands, and joints. Hot yoga was my saving grace until an accident fracture my pelvic and sacrum. I needed emergency surgery. I am not the same. Atrophy set in bad. And advice or encouragement will be appreciated. I totally understand and am willing to fight also. Good luck and thank you. I am in Woodbridge NJ.
Sherlene Perkins
My routine that I do daily is shake turmeric on my food to help combat inflammation. Unfortunately like every thing else I do forget. It is helpful. Currently trying to eliminate sugar completely.
Nesli
Hello I also have scloredarma . I can not deal with it. Raynod sendrom started to show dont know how to cope I am hopeless
Demetria
This is an awful disease and affects everyone differently. I know it can be difficult to cope with but don't lose hope.
Demi Montgomery
It can be like that sometimes but you have to start to look at it in a different way. I try to think positive and I think about everything I can still do. The pain will start to be more manageable the less you let it control your thinking! I distract myself with advocacy efforts, exercise etc. You are not alone! Hope this helps!
Janet Daninger
Fabulous column! This spoke to me - I feel the same! This is a crummy disease and so often I feel, "Now what!?" Rock on Warrior!!
Rebecca Field
So excited to read your debut column, Sherlene. It's awesome. Can't wait for the rest -Becky
Lisa
Thank you for this column, never have i read information regarding Scleroderma that resonates with me. I am from the UK, i am 57 and an ITU nurse, i dont know how much longer I can work in this role, but like yourself, i also push, fight and fall and then get back up again, I have to do this, I have to carry on doing the normal things in life that like yourself now take longer to do, I have to do this because this bloody disease will not define me. so again, Thank You x
Margi
Hi, great article! I do have a question: when you had a gastro operation, what exactly was done?
I have stomach aches every day, wondering what to do. Thanks
Sherlene Perkins
The procedure is called esophageal dilation. This assists in allowing food to pass. You should see a gastro doctor to look inside your stomach with a probe of some kind. Best to you.
Cindy Kanis
Rock on girl! I was diagnosed at 63 and have been on the roller coaster ever since. BUT… I have gone gluten free and have for the most part kept my symbols to a minimum!! Seriously, I firmly believed it has made a big difference! We all have our issues with “carders” as my husband And I like to call it, but a team of friends and Dr’s is a must!
Eileen
Reading Sherlene's column and all of the comments made my day! I refer to my 30 years of CREST Syndrome as my annoying disease - it annoys me and I feel like my complaining just annoys others (especially doctors)! I have a team - it is so important. I would add a dermatologist to the team. My current dermatologist and gastroenterologist are wonderful, empathetic and available. After so many doctors saying, "well it is probably just autoimmune" to everything I want to discuss. I have asked my husband for a new gi tract for Christmas for years but to no avail. Hang in there, seek the humor - we are warriors!!!
Demi Montgomery
Your article is great! I love to hear your not letting scleroderma get you down! You are inspiring and I'm a Fan!! Big Hugs!!
Donna E
I met Sherlene at at our church over 20 years ago and we have developed a bond and friendship thats here to stay. When she shared the news with me of her diagnosis I was saddened. I wondered what it met? What was it? Since she's a teacher, she taught me and she still is, as she learns more about Scleroderma. What's next? I see you, my warrior friend continuing to kick Sclerdermas butt! I love the article and all the work you are doing to inform others. Most of all I love you! Yes, you got this!
Latrina Hill
Thank you my scleroderma sister great read and I am praying for a cure for us all that suffer with this awful diagnosis
.
Kristi
Hi Sherlene,
Thank you for this blog!
I was also diagnosed in 2019, I was 45 at that time. It was a complete shock to me as well, I had every symptom of MS, which is what they initially thought I had. No I have developed ILD and heart issues on top of all the skin tightening and joint pain. I'm praying for all of us to find a cure and God to bless us! its a terrible disease. But we DO have an army behind us and all around us, like you said, we have to get up everyday and put on the FULL armour and be ready for the battle! God bless you!
Ps. I'm also in the Cleveland, Ohio area! We're close! :)
Sylvia Taylor
I have had scleroderma for 40 years. Just some hard lumps on my feet and hands, and 🐊 skin, is what I have. I use lots of creams on my skin twice a day. In winter, I wear layers of clothes, warm boots, gloves and and hat. I have had heat stroke , so get up early and do my work in summer, use AC. I do physical therapy every day.
Katie
Hello Sherlene,
You give me hope.. I have red spots all over my face hands are fine but my shoulders are atrophied I can barely reach shirt over my head… it’s a tough fight indeed, I am a women of color as welll and seeing this definitely gave me hope.. I have lots days of why me but then I see things like this which give me another push.. Keep fighting!!❤️
Lisa Nelson
Your strength and resilience are truly inspiring. Facing these daily challenges can be tough, but your determination to keep fighting, along with your support team and nonprofit, is amazing! Thank you for sharing your journey—it gives me hope.
I was diagnosed last summer at 49 and am still building my team of doctors and specialists. I also have EOE, diagnosed about 10 years ago, and I often wonder if it's connected to my scleroderma.