Shubhda Chaube recalls her journey from the early symptoms which were diagnosed as Raynaud’s phenomenon to the eventual diagnosis of Limited Systemic Sclerosis at age 47. Find out how she gained the knowledge and courage to handle this condition. Don’t miss the link to the book she has written to support others in their quest for comfort and her responses to our rapid questions.
My name is Shubhda, and I am a Systemic Sclerosis warrior living in Michigan, US. My path to diagnosis and learning to manage my condition was a winding road, but it has taught me so much about gratitude and the power of community.
Early Symptoms
My journey began in 2019 with Raynaud’s phenomenon, a condition where blood vessels spasm from cold or stress. My fingers and toes would turn white, blue, and then red, accompanied by numbness and sharp pain. Living in Michigan, my primary care physician (PCP) and I brushed it off as a normal reaction to freezing winters. Management for the first few years was entirely informal, relying on heavy gloves and hand warmers.
Fast forward to 2023, and extreme dry mouth surfaced. It was so severe I had to stop mid-sentence during meetings just to catch my breath and get moisture. This wake-up call led me back to the doctor. My physician examined my fingers and ordered blood work. My ANA test returned positive, with a strong 1:1280 titer.
Diagnosis of Systemic Sclerosis
At 47 years old in May 2024, I officially tested positive and was diagnosed with Limited Systemic Sclerosis. Every other test came back negative, ruling out rheumatoid arthritis and osteoporosis. Around this time, severe acid reflux and intense shoulder joint pain also set in.
My care team referred me to Occupational and Physical Therapy (OT/PT) to combat the physical limitations. This specialized rehabilitation became a turning point. The targeted exercises helped immensely with my daily stiffness management. Today, my fingers are no longer particularly sore.
Finding Support in Lived Experiences
In a matter of just a few months, my entire life changed. The physical toll was heavy, and my career had to take a backseat while I tried to navigate this new reality. I lost a significant amount of weight and felt overwhelmed.
I reached out to multiple support groups across various countries, desperate to understand this condition and find ways to feel good again. Armed with knowledge from reading, documentaries, incredible doctors, and support networks, I threw myself into self-healing.
I began focusing heavily on my nutrition, exercise, meditation, and yoga. It took time, but I am so glad to say I eventually regained my weight and was able to return to my job!
Changes my diet: Severe acid reflux forces me to eat smaller meals and sleep on a permanent incline. Extreme dry mouth requires me to keep water close by at all times.
Exercise Routine: My exercise routine is a balanced mix of rehabilitation, conditioning, and mindfulness. I began with specialized Occupational and Physical Therapy (OT/PT) routines, which effectively targeted my shoulder stiffness and resolved my finger soreness. Today, I maintain my cardiovascular health by running a few miles a day, while incorporating regular strengthening exercises to rebuild muscle support around my joints. To manage my physical limitations, joint flexibility, and balance, I practice yoga and Tai Chi. Finally, I incorporate daily meditation into my routine, which provides essential support in managing the mental stress of navigating a chronic condition.
Managing My Health
The last few years have been challenging and required quite a few lifestyle changes. I have had to learn how to pace myself, and while I am still working on getting better at slowing down, I have found a sense of peace with the condition and just try to live and let live.
Managing my health now involves regular medical monitoring. This includes frequent visits with my rheumatologist, routine blood work, and health checkups. To keep an eye on everything, I also undergo regular diagnostic screenings like Echocardiograms, Pulmonary Function Tests, and chest CT scans.
I am on a few regular medications and supplements, but nothing specifically for systemic sclerosis itself. I take omeprazole daily to control the severe acid reflux and my primary care physician recently started me on atorvastatin to manage my cholesterol. I also include daily multivitamins to support my overall health.
Handling Changes in my Social Life
My health challenges have just naturally caused me to slow down my social circle a bit. I tend to skip late nights out or big parties now, mostly because I lose my energy a little more quickly these days. When the fatigue hits, it is a pretty clear signal that I need to stop and rest up for a bit before I can get back to functioning normally. I don't really worry or feel down about it anymore, and I just take things as they come.
Family Support
Family commitments are much easier to manage now that my kids are grown and independent. While I still handle daily tasks and my regular job, I do not do all the cooking and cleaning myself. My husband and kids are always there to support me, and I hire extra help around the house whenever I need it so I can keep moving at my own comfortable pace.
Going Back to Work
Going back to work was a smooth transition because I was already a remote employee, which made it much easier to manage my environment. I did not need to ask for any changes in my responsibilities or formal reasonable accommodation. Even so, my manager and my peers were extremely helpful and accommodating, always adjusting to support me whenever needed.
My Overall approach and mindset
I won’t say that I am completely recovered or healed. I understand that this is a lifelong condition I will always have to manage. The daily challenges, aches, and pains are still there. But I constantly remind myself that things could be worse. I am profoundly grateful to my family, my friends, and above all, God, for giving me this life and the courage to keep moving forward.
A positive mindset and an attitude of gratitude are what pull me through the hardest days.
During my time off recuperating, I poured my energy into writing a book titled Calm, Core, and Cozy Layers (link here) to help others find comfort in the chaos.
To my fellow patients: please know that you are not alone. We are all in this together. Life can feel incredibly tough right now, but everyone is fighting their own battles. It’s not the battle itself, but the way we choose to deal with it that makes all the difference.
Complete the sentence
My motto in life: Take it day by day, and never let a cold winter or a cold diagnosis, freeze your spirit.
I was inspired by: The support group and the people. Doctors help us with diagnosis and treatment, but the patient helps us deal with how to live with this.
The strangest comment/reaction I received: "You look perfectly normal." Well, never judge a book by its cover.
The funniest moment was: Realizing that my fingers can sense a 1-degree temperature drop faster than the most advanced meteorology equipment in Michigan.
The most annoying moment: Realizing I can never lay down completely flat anymore because severe acid reflux demands I sleep on a permanent incline.
The best thing someone said: My husband told me, "Your diagnosis is a chapter in your book, but it is definitely not the whole story."
I love: The crisp, quiet calm of an early Michigan morning before the rest of the world wakes up, sharing a cup of tea with my husband and also chatting with friends and family, talking about everything and nothing.
I hate: Dishonesty, disloyalty, and an unorganized house.
I fear: Nothing in particular.
My biggest support: My family.
The best gift I got: A completely unplanned, slow weekend with my family and zero obligations on the calendar.
I wish: A cure to the disease.
My Book: India: https://www.amazon.in/dp/B0FQ9QXGPH
