My Descent, Ascent, and Ongoing Battle: A Journey Through Illness and Resilience

I believe in strength, and courage. Each day, I focus on what I can do, honoring small victories and the obstacles I continue to overcome.

A few years ago, many of you may recall, or even resonate with the immense battle I faced.

At one point, I weighed just 83 pounds.I was severely malnourished, unable to tolerate any food or fluids without experiencing extreme reactions.

Hives, rashes, and other symptoms covered my body.Bruises blanketed my skin from head to toe. I had become little more than bones beneath sagging skin. My muscle mass was nearly nonexistent. I didn’t even have the strength to hold up my own head.

I couldn’t sit or stand without assistance.When I attempted to sit up, I would fall over.Even with someone supporting me, trying to stand would end with me collapsing to the ground. My body could no longer sustain its own weight.

I had to be laid on a blanket and pulled around the house, just to make it to the bathroom.I couldn’t function independently. I was so weak, I slept day and night.

Daily tasks became impossible things as simple as driving my children to school or running errands were out of reach.

I was unable to eat or consume enough fluids to sustain life. Emergency room visits became routine, first every few days, then every other day, and eventually, every single day.

Although I had been diagnosed with Mast Cell Disease, no physician seemed equipped to help me. I was labeled “too complex” and dismissed. They didn’t know how to treat me, and I was begging for help because I could feel myself slipping away.

I sought out several specialists, trying to build a medical team who understood the complexity of my conditions. My primary care doctor consulted with a physician in New York. Together, we secured referrals to specific specialists, one of them being a doctor from TPIRC.

That doctor confirmed my previous diagnoses: Mast Cell Disease, Ehlers-Danlos Syndrome, and Dysautonomia, including a subtype known as POTS (Postural Orthostatic Tachycardia Syndrome).Although he agreed to see me only as a consultant, he created a care plan for my local doctors to follow.

I also connected with one of the top cardiologists in my area, someone well-versed in the triad of conditions I had. He helped me coordinate a proper care team and eventually admitted me to the hospital to begin my long path back to health.

We began with compounded ketotifen and ranitidine. Due to my prolonged malnutrition, my body was highly sensitive. The first time I took the medication, I gagged and vomited. It tasted like poison, I even joked about it. The doctors and nurses around me laughed with me

, a rare lighthearted moment in a dark time.

Although I was finally started on the right treatment, my body was still weak, and we needed time. It was a very slow climb.

A geneticist later diagnosed me officially with Ehlers-Danlos Syndrome, but unfortunately, she retired shortly after, leaving me with no one to manage that part of my care.

I was fainting, having severe reactions and flares I didn’t yet understand, but they were all symptoms of my underlying conditions.

Eventually, I met an ER doctor who was willing to admit me for malnutrition. Thankfully, the hospitalist understood all three of my conditions.

We tried several medications, but I was reacting to something in each of them.I learned that even inactive ingredients, fillers, dyes, preservatives could trigger dangerous responses.

I required medications in their purest form, compounded in sterile water, without any additives.Only then could my body begin to tolerate them.

Once I was stabilized on medication, my condition improved slightly. But a few weeks later, my doctors determined I needed an NJ feeding tube.At just 83 pounds and unable to tolerate food, I was in critical condition.

There was genuine concern I wouldn’t survive the procedure. My family was prepared for the worst.Miraculously, the surgery was a success. Waking up afterward felt like a second chance.

Still, every day was a struggle.I reacted to the feeding tube itself.To cope, I was placed on a continuous Benadryl drip until my body could adjust. Ultimately, the tube had to be removed, I fought hard to introduce two (now three) foods that I rely on daily. I’ll share more on that later.

I spent weeks , even months in the hospital. After multiple food trials, I was able to tolerate five items:

• Blueberries

• Plain organic Greek yogurt

• Plain organic turkey

• Plain organic chicken

• Cooked organic Bartlett pears

Once my body could handle these, I was finally discharged.

It took time both for the medications to take effect and for nourishment to rebuild what had been lost.Slowly, I began regaining muscle mass.

I wiggled my toes, moved my feet, legs, arms. tried lifting my head.I sat upright. Eventually, I stood, if only for seconds.

The process was agonizing, Giving up was never an option, my children needed me.

My loved ones stood by my side lifting me when I couldn’t stand on my own. They were my strength when mine had all but vanished.

Today, my doctors still refer to me as a walking miracle.They can’t explain it, other than to say I must have an immense reservoir of strength within.

I know the truth, it’s because of you. My family, my friends, you never let me give up.Thank you for carrying me through the storm. You remain my strength, even now.

Eventually, I had enough nutrition to support real progress. I reached a healthy weight 135 to 137 lbs., was walking 1– 4 miles daily. I could function like any healthy person. From the outside, you’d never guess I was battling chronic illness. Even though I still wore a mask in public, I was finally able to lower it and breathe the fresh outdoor air.

At one point, I could tolerate only three of the original five foods:

• Plain deli-style turkey (in water)

• Organic naked chicken

• Organic Fage-brand Greek yogurt

• Peeled, cooked, puréed pears

• Blueberries (previously, now restricted)

That was — and still is — all I eat. Every day. Every meal.Even on holidays.Someday, I hope to sit at the table and enjoy a holiday dinner with my children.

Depending on my daily exposures, I may react even to these few items.It’s a continuous battle.

I drink only a specific brand of bottled water, as even slight differences in water composition can provoke a reaction.

I’m still undergoing food trials, or at least, I was as of June 2025, I currently have no physician willing to oversee further food challenges.

At one point, I was admitted to the ICU just to trial vitamin D3 in its purest compounded form. To everyone’s amazement, including mine, my body accepted it. It acted as a mast cell stabilizer. A small, but meaningful victory.

Why I Share My Story

I share this not for sympathy, but for awareness. I want our future generations to have understanding and support for complex conditions like:

• Mast Cell Disease

• P.O.T.S. (Postural Orthostatic Tachycardia Syndrome)

• Dysautonomia

• Ehlers-Danlos Syndrome

I want to help find answers. I want to be part of the solution.And I need your help.

Please educate yourself. Learn about these conditions.Share this story with others.Together, we can create change.

Written By

"The Origional " Girl In A Bubble"