The uncertainty of scleroderma leaves me frustrated, overwhelmed
Columnist Amy Gietzen struggles with a slew of mysterious symptoms
A chronic, life-threatening health problem can disrupt all aspects of your life, especially when it develops unexpectedly.
When I was diagnosed with scleroderma at age 19, I was overwhelmed by difficult emotions, from fear and worry to profound sadness, despair, and grief. These feelings rushed over me like cold waves of water, leaving me numb and frozen with shock. I felt like I’d never be able to cope.
For years I put on a brave face. I put my head down and did the work, always trying to be proactive and positive in the face of scleroderma. But I still felt like I was moving further and further away from my goal of stabilizing my symptoms. When would all of my hard work, dedication, and treatment compliance pay off?
I’m tired
A common mentality in our society is to “sleep when you’re dead,” but I’d be so grateful if my body afforded me a break.
Lately, I’ve been tired of my life, consumed with the overbearing weight of 21 years of bad days and pain-filled nights. The numbness I felt early on in my journey has thawed and left me with an all-encompassing pain that’s never quelled.
This past year has been a whirlwind of raw emotions. I’ve been dealing with an assortment of symptoms, including lightheadedness, blurred vision, heart palpitations, and severe dizziness. My days have gone from productive to having to brush my teeth lying down due to dizziness and breathlessness.
When will my body finally be able to rest? Will scleroderma ever set me free?
Still no answers
As my dad drove us back home to New York after yet another slew of appointments in Pittsburgh, I looked out the window, focusing on the landscape whizzing by. I began taking in the severity of my medical situation. What will I do if doctors can’t figure out what’s wrong with me?
I endured two full days of pleading my case with my rheumatologist and cardiologist, crossing my fingers that they’d recognize what was wrong with me. I’ve been to Pittsburgh six times so far in 2023, each time leaving with a new treatment plan to try. Unfortunately, I’ve struck out with each one. Nothing seems to alleviate my symptoms.
Now, if you know me, you’ll know that I am not one to complain. Despite pain and discomfort, I usually try to grin and bear it. After all, I’ve been living with scleroderma for 90% of my adult life. I know how this game is played. Symptoms come and go, and some last longer than others.
Usually my medical team and I can find the right combination of medication, therapy, and dietary changes that allows my symptoms to slowly dissipate. But this time, nothing seems to be working. I feel more and more defeated after every trip to Pittsburgh. Will I ever get my life back?
Practicing self-compassion
Living with scleroderma can make me feel like the weight of the world is on my shoulders. The amount of uncertainty and life-altering changes could make even the strongest people want to give up. I think many of us with chronic illness eventually reach a breaking point, but I also believe that it’s perfectly reasonable for us to feel uncertain, scared, frustrated, helpless, and angry at times.
I know that I’m a fighter. Even though my doctors are still trying to figure out what exactly is causing all of my peculiar symptoms, I am confident I’ll beat this funk I’m in eventually.
There’s no right way to deal with illness. There isn’t an appropriate way to represent pain. The only thing I know for certain is that today I feel OK, and even if it’s temporary, I find comfort in that feeling.
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.
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Comments
Robert G Dupuis
I’m so sorry to hear about some of the stuff that people with Scleroderma are faced with every day,however let me tell you that I am an 81 year old man and I have had Scleroderma for 25 years. Not at all easy to live with but here I am so hang in there and get as much joy out of every day possible.Love to all,Bob.
Tracey Kenard
Great encouraging words, Bob!!!!
Joan Krajca-Radcliffe
What an encouraging note Bob! It made me smile just to read it!
I am 70 yrs old but was just formally diagnosed with limited systemic scleroderma including full CREST symptoms about 7 years ago. I now have been diagnosed with an opportunistic MAC lung infection, and after 6 months of 4 oral antibiotics plus inhaled amikacin, I’ve developed significant sensorineural hearing loss as well. Some days it’s hard to stay active and optimistic, but, you’re right, I hang in there and get as much joy out of every day possible, just as you said! Blessings to you and Amy and all who are trying to do the best you can.
Regina Scrocco
Dear Amy, Listen to your head & heart. They are telling you to stop what you're doing, recline, rest, hydrate, & sometimes eat ASAP. Your body is exhausted from oxidative/ metabolic cellular stress, in my experience. The cells need nutrition to deal with the activity/ inflammation & oxygen & fluids to balance organ functioning & protect the body. The eyes & lightheadedness are an early warning system to rest & get help. I used to get the palpitations [since childhood], but now it's sweating of my head, face, & neck. No recent dizziness, but since Jan, it's because I find myself leaning my body weight against the kit counter or bathroom sink, trying to fix a meal/ finish the dishes or to brush my teeth. Your body is focused on its core functions of the heart getting oxygen to the brain. I also start sipping cold glass bottled spring water that has sodium, calcium, & potassium. The coldness shocks & slows the heart & the fluids help protect my kidneys. Oxygen is very helpful too, if available [I don't have it], but since in my case with SIBO & dysmotility it helps the heart & lungs as the stomach/GI tract is pressing on the both of them; but the reclining on the R with head shoulders elevated & inactivity does slow the fast shallow respirations and prevents heart small/micro vessel pain/stinging from compression from bloated GI organs.
It is very scary and not because I'm anxious. It's because of the pattern. It's scary because you know how you feel and what's going to happen or in my case as a nurse what may happen and what has happened, when people don't believe you or understand you or your body. A pulse oximeter is not necessarily helpful either, I have registered 90% reclining in bed & blacked out afterwards, because my respirations were shallow, rapid, & ineffective. After a heart/HTN/SIBO event, 3 EKG machines didn't register & the leads didn't stick, until I told them to pile coats on top of me [PCP office- no blankets & they didn't believe I was DX with scleroderma] and by the time I got to see a cardiologist the first halter monitor didn't register at all, and the second was faint & weeks after the event.
I think it's also very scary & difficult for doctors, especially for specialists who don't know or understand scleroderma/rare diseases or have the time or willingness to learn about it. It is good that now, there's starting to be interdisciplinary teams with the newly diagnosed & that we have dedicated, courageous researchers & that you are with a team that is working to help us all. I have faith & hope & am optimistic; when I'm good, I'm good; when I'm not, I'm not. What counts is being able to trust someone willing to help & explore the what ifs, despite all the "overwhelming" odds.
Amy Gietzen
thank you so much for sharing
Amanda
I'm curious of if you and your doctors found the problem causing the breathing, heart palpations, & dizziness. I had the same thing going on with me a few years back. I couldn't even cook, do a load of laundry, or walk any amount of distance without needing to sit immediately, which would help resolve my symptoms which includes a plummet in 02 anytime I stood up. Turns out, after 2 hospital stays, oxygen machines, and a few years later, it was my GERD and my herniated esophagus. I have mild to moderate fluid around my heart, mild ILD but neither was the culprit. Raising my acid reducing drugs, and getting a new bed where I can sleep elevated every night all night has relieved my symptoms (for now at least). I hope you found some answers and a solution!