10 Things You Should Know About My Scleroderma Diagnosis

Amy Baker avatar

by Amy Baker |

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I have scleroderma. For the most part, I am pretty private about my scleroderma diagnosis — except for the fact that I write a column. Go figure.

However, the thought of discussing my diagnosis face to face with others causes me anxiety. I know it sounds strange, but I can sense impending issues that surely will follow.

Trying to explain my illness with a brief introduction can be daunting for the person I’m speaking with and for me. I’ll notice a certain look wash over their face and know they don’t know what to say. It’s OK, I didn’t either.

Instead, I’ll do what I do best: I’ll write it out for both of us, which I’ve done in the following. Please remember that everyone has a different journey, and this is only mine. 

I have a full-time job being a chronic illness patient.

A scleroderma patient spends an ample amount of time sitting in a doctor’s office. As a result, we have learned to come prepared for a lengthy wait. 

Cellphone, charger, snacks, reading material — check. 

Scleroderma has afforded me a laundry list of practitioners. Because it is systemic, multiple systems in our bodies are affected. Our bodies are tired and worn out. It is exhausting to have blood draws, X-rays, skin biopsies, and a slew of other fun things done to our bodies in the name of science. It’s like a merry-go-round. But we come prepared!  

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I grieve the old me.

When I say I miss me, I do. The old me was before my body started to betray me.

I liken my grieving process to the five stages of grief:

  • I wanted to deny my scleroderma diagnosis.
  • To say I was angry was an understatement. Actually, I’m still angry.
  • I bargained with God: “I will eat better and exercise more. Would you please let this diagnosis be wrong?”
  • I became highly depressed. I still battle depression and anxiety. The depression stage is the most challenging for me to get out of, but the process is fluid. Moving through these stages — not necessarily in order — is expected.
  • I have yet to pass through the final step, acceptance. I’ll occasionally visit this stage but haven’t quite mastered it. 

I am happy for you, but I am also slightly jealous of you.

Please know that I want you to live your best life. Seeing you succeed and be happy makes me over the moon with happiness for you. But sometimes, even when I try to hide it, I feel jealous. I want to keep living my old best life. Trying to adjust to this new life is complicated and messy. 

If you take the time to learn about my scleroderma diagnosis, you genuinely care about what I am experiencing.

When people in my life tell me they have researched my disease, it makes me feel like they are trying to understand. Receiving a rare autoimmune diagnosis is tough to take. The weight of the diagnosis can be overwhelming. Thank you for taking the time to understand me. 

My emotions are like a roller coaster.

One minute I might be feeling fine and on top of the world, while the next, a crushing wave of fatigue will hit me and swiftly pull me under. This moment will remind me of my scleroderma diagnosis. The disease is never far from my mind, and neither are the emotions I experience when dealing with it. Please be patient with me. I want to be happy and feel better. 

I’ve become an internet physician. I can Google symptoms and diagnose myself with the best of them!

I am slightly obsessed with Google. My intimate relationship with the search engine giant started when I began having symptoms.

That reminds me, quick tip: Take photos of changes you see on your skin, such as rashes, hives, tiny red dots, and other things that like to pop up. You and your physician will thank me.

My body is much like a car. When a car acts up, we call the mechanic and take it in. Therefore, I document everything.

I’ll tell you I’m fine, even when I’m not.

Most of the time, I won’t fess up to being unwell. Watch for my cues, such as the way I move when I’m hurting and my lack of appetite when I’m exhausted and in pain. 

I will be scared.

People will tell me to be positive. They’ll say to me, “At least it’s not cancer.” And they’re correct. Yet I remain scared and uncertain about how my life will change. Each new diagnosis prompts another Google search. I constantly worry about becoming incapacitated and wonder what will happen to my family. My life is irrevocably changed, and it scares me. 

I live in near constant pain.

Initially, I probably will complain a lot. Bear with me. My body is trying to adjust to living in constant pain. The initial process was a difficult and draining time in my life. However, anyone living with this disease and other chronic illnesses will understand. Our bodies tend to become accustomed to extremely high levels of pain.

Let me be pointedly clear: The pain is still there. Because of this, the standard pain scale doesn’t always accurately reflect our pain level. When we say we hurt, we do. 

I will feel like a burden.

More than anything, I do not wish to be a burden to anyone who loves me and cares for me. This feeling is probably the hardest one I face. Those who are diagnosed never imagined a life with an autoimmune disease.

Losing our ability to do the big and small tasks in life is heartbreaking. We get mad at our bodies for failing us. We don’t understand why one day we are golden and the next we are struggling to get out of bed and start our day.

What are some things you would like others to know if you’ve been diagnosed with scleroderma? Please share in the comments below. 

***

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

Suzanne Sharon Laughton avatar

Suzanne Sharon Laughton

Sometimes when i see friends, i look well, and they tell me this. I can act completely fine while i am with them. When i am home later, i can go downhill very quickly, usually because i have eaten (my Scleroderma is gut predominant), so i'll often be up most of the night. People see you looking fine, and assume you are fine. Not always the case at all.

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June Amy avatar

June Amy

My reaction was very different, I had never heard of it before but just thought, oh well that explains a lot. I don't worry about it, it is what it is and it is not curable so I can only try to ease the symptoms. Yes I am always in pain, I get all sorts of new things wrong and sometimes I feel completely wiped out, but I just go with the flow really At least I am alive and can function quite well apart from not being able to eat mch solid food and my hands do not work too well, but I can still knit and read and do most of the housework and I am happy and grateful for that :)

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Doreen Bowers avatar

Doreen Bowers

I feel I am being blamed for everything that goes wrong in the family even when I am not and that feeling doesnt go away, I have anxiety thinking everyone is talking about me.. I get nasty e-mails because people think I can cope with them. Im not ill I dont look ill its nothing told to forget it deal with it and I am too afraid to bite back because what they say hurts even more. Maybe I should just be able to deal with it..

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Carol Volckmann avatar

Carol Volckmann

Amy, thank you for sharing your struggles and all the emotions that go along with having such a chronic disease.

I thought when I was diagnosed with PAH that was my biggest challenge for the rest of my life. Then I learned my PAH was caused by Sclaraderma.

For a number of years I still thought my PAH was my biggest enemy but slowly becoming aware that many of my symptoms were because of Sclaraderma - the skin, the red ugly spots, the fatigue . Then came the enlarged liver and spleen and bowel incontinence and now an ostomy.

My PAH is pretty stable and I have been handling that for 18 years (I am 77) and plan to be around for many more years if only I can live with the ever changing effects of Sclaraderma!

Most of the time I think I am okay but yes, I do go though all the stages in no particular order. Your column helped. Thank you.

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Denise avatar

Denise

My goodness you nailed it. Everything you write s so so true. I am glad there is someone who feels like I do. Thank you

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Suzanne Sharon Laughton avatar

Suzanne Sharon Laughton

I also agree with you June. I was relieved to get my diagnosis, albeit unsure of what the future holds. I do remain positive though, and hope for the best outcome always. I take one day at a time and try not to think too far ahead. I do get frustrated if i'm honest, with the limitations that it brings, but try my best everyday. I have a supportive network of friends and family around me, so am very lucky!

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JO KEISER avatar

JO KEISER

My frustration is that so many doctors in different specialties I have to see, do not really understand scleroderma, so it's hard to get them to see the whole picture...very frustrating. The crack-down on pain medicines is also a major thing. You aren't allowed to have strong enough pain meds any more, because of others who have abused it. I'm grateful to still be alive...just turned 83. But living in this horrific pain and overwhelming fatigue isn't much quality of life.

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Yvonne Hoffmann avatar

Yvonne Hoffmann

Yes to go out is a effect , noone sees you do down hill.
I took photos to show my gp. She was shocked the first time.
I have noticed stress is a big part.

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DAN PARKER avatar

DAN PARKER

I'm challenged with two auto-immune disorders - scleroderma and mystenia gravis, so don't always know which symptoms are caused by each. My lung capacity is around 48-52 % so I tire easily, but on positive side, my blood oxygen levels remain at 93-95% so pacing myself works pretty well. Main issues are lock-jaw at beginning of eating or even shaving or brushing my teeth. Also, I run frequent spells of snapping jaws which are involuntary and get frequent dry mouth at night, but never in the day time. My hands are drawing close with very little dexterity and strength so my ability to do much is very limited. I can no longer get up from a regular chair. My new lift chair is a veritable gift in that process, Regular chair arms do not work for me in getting up but using my hands pushing from the seat of an elevated chair works for me. I have learned new processes or devices to help myself.

In my truck I keep a coat hanger for reaching back across my shoulder to grab the seat belt. I keep a small screwdriver to stick through the ignition key end to give me leverage to turn the ignition on. I use the crook of my cane handle in my door rest to pull the door closed. I keep a pair of pliers to give me leverage to open/close my gas cap for refueling. Also, pliers to grip my credit card to put it in/out of the pump because I do not have the dexterity to quickly retrieve the card after verification. I'm getting better at swallowing my pride and just asking someone at a neighboring pump to help me with the process. Most are delighted to do so. Adding a steering wheel knob has given me extra time of being able to drive, but the time is approaching when I will have to give that up.

My reach is extremely reduced. I can no longer reach high things. In the kitchen most things are on the counter where I reach them. I had a four inch moveable built in front of my microwave and cupboards so I can each the bottom shelf. In two of my clothes closets I had the clothes bar lowered 14 inches so I can reach them. Dressing is very difficult, particularly putting on a shirt. I've learned to drape my shirt over the side of my Lazy Boy chair and back into the sleeves and then seesawing it up my arms and back over my shoulders. As for many scleroderma suffers, I get cold hands, but the rest ofme is warm. A lady at church made me a muff I can hook around my waist. I can put my hands in it while sitting around or even put a heat pack it it on particularly cold days. I find people love to help when you express a need.

An unusual aspect of my circumstances is that when I can elevate my posterior about four inches higher than my knees I can stand with reasonable stability and core strength. Any step-up higher than two inches I need to be holding on to a support. If a stair rail is larger than 1.25 inches I cannot grab it so regular steps are a near impossibility. At church, we stack two chairs which gives me the ability to stand without someone needing to help me in a Covid environment. I find that handicapped rest rooms are no help for "Number 2" events for my circumstances. I'm careful to always do that at home where I have a handicap height toilet with another elevated seat added plus a cut down walker that allows me just the right height to push up from. Commercial elevated seats handles were just too high to allow me leverage to push up from. I don't know if other scleroderma people experience this, I just know I have to be pro-active in making my life better.

I have to teach people how to assist me if I have to sit in a regular chair or wheel chair. Most medical assistants want to pull me up from the front which makes me feel like I'm going to fall on my face. What works for me is to grab my belt in the back and lift straight up and I easily pop up, feeling safe all the while.. I wonder why doctor offices or hospital waiting rooms don't have some higher chairs for people like me. Even if they had stackable chairs, two or three could be stacked to get the same results. It would give dignity to the patient and save the backs of health care workers.

A blessing of my condition is that I do not nave significant pains. Sitting in my lift recliner one would think nothing was wrong with me. Early on in my diagnosis I had extremely high C-reactive protein readings, indicating high body inflammation which generally causes pain. Reading various sources of alternative health articles like from Steven Grundry, M.D., and others, claiming a healthy diet can improve auto-immune caused symptons, I changed my diet considerably. A church friend started making me a weekly batch of green "smoothies", consisting of mostly kale, spinach, avocados, lemons, and various fruit as sweetners. Over time my C-reactive protein returned to normal, my rock-hard arms have soften a bit and hair on them is regrowing, and my leg and back itching are mostly gone. Recently my neurologist has prescribed IVIG infusions to hopefully address my muscle weakness. So, I'm in a hopeful mode. God has been my strength and my trust is in Him for the journey. My prayer is that I might still remain useful for His kingdom purposes along the way. Amy, my payers for your journey and for you to "keep on keeping on." Sharing your journey was an encouragement.

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Veronica Gerrard avatar

Veronica Gerrard

I have had CREST, for about 20 years. I am still learning how to cope. Especially with the Raynauds.
I am in P.S.right now, running away, from the cold winters of Canada.
I went shopping in a Mall, today, it was absolutely freezing it felt like I was walking around in a freezer compartment, with the air conditioning on..
Then I noticed a man shopping by himself, he was dressed like he was going skiing. The full gear .With hat, gloves, thick snow jacket, of course a mask, with it being COVID
What I learned today, from this person, is to hell with it. Dress properly, to keep warm, look after your needs. At the end of the day, it does not matter what other people think. Stay warm, my friends❤️🙏

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Sharon Row avatar

Sharon Row

I've had systemic sclerosis for 40 years ... it's a tough illness and I can identify with all of your concerns, fears, anxiety and pain. You will come to accept it one day, I hope. There is no cure, but there are treatments. I hope you will find a Doctor you can trust implicitly and follow THEIR advice rather than Merck's Manual, the internet doctors or other people. Systemic Sclerosis can be different in everyone who has it - we share many symptoms but over time it will become clear how YOUR body will cope with it. I don't know how long you've had it or how old you are ... I was 29 when diagnosed and am now 69. Please know that there is hope, and while you live with pain every day, I went on to earn a Bachelor's Degree, and a Master's Degree and became a teacher at 50. It took me a little while to finish things and I'm slower at most things but I work through it every day. I wish all good things for you - you've got it, just don't let it get YOU. xx

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Amy Houston avatar

Amy Houston

I must say that I am nodding in agreement with this article. I am a 30 year survivor. This disease has robbed me of my life. I can no longer work or do any physical activity such as hiking. Due to scar tissue I cannot sing, make love or keep quantities of food in my stomach…the list is endless. It has crippled my hands and shoulders, taken all the toes on my right foot, my ability to breathe normally, disfigured my face and cost me a 22 year marriage just to scratch the surface.
I am nothing like I used to be yet my mind remembers and my heart desires as it did before. The ongoing loss and grief are incredibly difficult. Unless you have experienced something similar you can’t possibly understand and I get that. Just please don’t dismiss what we say. If I open up enough to tell you the hard stuff please do not compare my situation to yours or others. Just listen. As the article says, we do not want to be burdens but we really do need support. Sometimes the best words are simply “I’m sorry.”

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Erena Bruce avatar

Erena Bruce

Everyone, everywhere is managing something! Some of us are not so keen to talk personally about it, some of us prefer to talk to share in order to educate about a somewhat unknown condition such as Scleroderma. However we go about our acknowledging what we have, it is what it is...part of our journey is finding ways to manage both chemically and naturally. Its quite mysterious in a way our journey. We know what the end will be ......but its the journey that takes us over mountains, through rivers, trudging, enduring, resting, convalescing, determined, head strong, content, wonderous. Our ying and our yang keeps the balance...live moments of your journey folks.

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Jo avatar

Jo

Except for my husband, my family does not know the extent of the pain and fatigue I have. Some time ago I attempted at times to explain to my adult kids. I found they don't really want to know the details - that it's too hard for them to think of me in pain. It's easier, I learned, to be quiet. I also agree with Suzanne above, friends say you look good and you do - but they don't know what it's really like when you get home. I don't want to be a burden to anyone so the fight is a quiet one. I have to add that I'm grateful for the inner strength I do have and for my husband's unrelenting support when my strength is at a low point.

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Tobey Schwartz avatar

Tobey Schwartz

I try to accept things but I can't seem to get past the angry/anxious stage. I don't want to be like this. If I want a cup of coffee I need my walker with the tray on it. I need to grip the coffee cup getting it out of the microwave; it is hard for me to lift my arms up as high as my head and my fingers are usually numb and weak. I spill/drop a lot of things. That's one example of a small activity that has become a project. My handwriting looks like chicken scratch, I can't walk more than 20 feet at a time, I can't walk up steps, button clothes, etc.
It isn't productive being angry, it doesn't solve anything or make things better, but some days I am so damn frustrated. Well meaning friends tell me I look good. They care about me. I think they are uncomfortable with my limitations. I do not bore them with the daily changes I am dealing with. I do have things I am able to accept and I am thrilled when I can accomplish a small project. One day at a time! Thanks for letting me vent.

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Annie Simpson avatar

Annie Simpson

Was diagnosed with Scleroderma at age sixteen. Currently fifty-seven years old. The physical pain and everything else under the umbrella has been a pain in the fill in the blank. I began taking omega xl along with sun chlorella a few month's ago. Can't express enough the positive changes I have experienced. My only complaint is the cost of the supplements. But I'm worth it.

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June Mercer avatar

June Mercer

I have been recently diagnosed with systemic Scleroderma after years of pain . I am finding it difficult mentally right now , it feels like a double whammy because I also have Lynch Syndrome which I've coped with since my first cancer 26 years ago . It just feels overwhelming with so many hospital appointments and investigations to get through and although I have had 3 cancers the implications of Scleroderma scares me ..Wishing everybody well X

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Neil McManus avatar

Neil McManus

Wow, you talk about everything I reflect on, although I don't have the standard diagnosis of auto immune disease as someone with systemic scleroderma my quality of life has been severely affected. I'm a peripheral blood allogeneic stem cell transplant survivor, which cured the AML leukemia I was diagnosed with March 2014. The journey has been fraught with pain and suffering. I have severe scleroderma from the chronic GVHD; felt with numerous infections. Google research has been a resource I'm using every day trying to find some resolution to my condition. I can relate to everything you talk about in this article. My heart goes out to all the people struggling with medical conditions that have yet to have a true cure or symptom alleviating medication. It is a frustrating, difficult situation to think that the medical institution has been doing SCT for 45 years and they still don't have a handle on resolving it. The treatment methods seem to be stuck in a endless process of immunosuppression via chemicals that enable a cascade of other life threatening conditions, for example being susceptible to infection due to lower across the board blood cell counts. Sometimes it is just too much, and I am heavily saddened. It seems to be true, unless you have experienced it it is hard to relate.

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Nancy. Dunington avatar

Nancy. Dunington

Omega xl? Is this fish oil?

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