A Transverse myelitis interview , Antiphospholipid / Hughes Syndrome, Asthma, Dysautonomia / POTS.

gloria_kazan's interview


How did all start?

My journey with TM began with extreme diarrhea. Over the next several days I developed a strange numbness in my feet. Then the discomfort turned into terrible pain. I was admitted to the hospital, where testing was done. A lesion was found on my spinal cord at T5-7. When I go out of the hospital, the day before my birthday, I was in more pain than when I was admitted.

Do you already have a diagnosis? How long did it take you to get it?

It took about seven months to get a diagnosis as well as the reason I acquired Transverse Myelitis. It was do to Antiphospholipid Syndrome. Because of Transverse Myelitis, I found out that I have Antiphospholipid Syndrome.

For what medical specialties have you been treated? What has been the most useful specialty for your?

I've been treated by: Allergist, Cardiologist, Dermatologist (for Morphea Scleroderma), Gastroenterologist, Hematologist, Neurologist, Pulmonologist, Rheumatologist

What has been the most useful thing for you so far?

My neurologist has been very helpful in providing help for my myoclonic seizures. Also, exercising every day has been a great help. Transverse Myelitis Folks (Blue Crew), on Facebook, has been a great support group.

What have been your biggest difficulties?

disrupted sensation in feet and lower legs, banding at T5, ongoing digestive problems including postprandial syncope and diarrhea, myoclonic seizures, periodic episodes of exhaustion. Because of my asthma, I become ill if I am around fragrance, so I avoid it in every way I can.

How has your social and family environment reacted? Have your social or family relationships changed?

At first it was extremely hard. I walked with hyperextended posture. I dropped things. People treated me like I was mentally deficient because of the way I looked. Just getting through each day was incredibly exhausting. My symptoms are far less obvious these days, but I still have to make allowances for my conditions.

What things have you stopped doing?

I try not to over-exert myself. When I hike, it must be an easy hike and I use a walking stick. Sometimes I fall down. I will not climb a ladder. I must be careful to maintain a familiar diet to avoid postprandial syncope. I stay away from large crowds.

What do you think about the future?

I have come far since my diagnoses in 2007. Learning to make the adjustments I need has become mostly second nature. I work at continuing to improve.

So far, which years have been the best years in your life? What have you done during them?

At first, I was terrified and in horrendous pain from my condition. Now I accept it. The pain has greatly decreased. Life is good. I look forward to each new day. In 2018 I sold my condo and bought a lovely house that I share with my cat.

What would you like to do if you didn’t have your condition?

I would hike more. I would get out and about more.

If you had to describe your life in a sentence, what would it be?

I have overcome obstacles, I accept myself as I am, and I look forward to each new day.

Finally, what advice would you give to a person in a similar situation?

Never give up. Be good to yourself.


Aug 17, 2022

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