"You are very special" is how most doctors describe me. I have some rare, unusual, invisible chronic illnesses: Postural Orthostatic Tachycardia Syndrome (POTS) which has now progressed to Orthostatic Hypotension (OH), Gastroparesis(GP),Ehlers-Danlos Syndrome (EDS), Occipital Neuralgia Fibromyalgia, Epilepsy, Insomnia, ADD, and IRLEN syndrome(correctable dyslexia). With these illnesses I had to find ways to adapt everyday activities so that I can do more with the energy I do have. Hopefully, my blog will help people use my ideas or think of their own to use.
To help with the pain in my head and back I get Occipital Nerve Blocks and Trigger Point Injections on my back every 6 weeks. Typically people get nerve blocks every 3 months but for me they don't last long enough. Today I had the procedure! My doctor doesn't use anesthetic, which is fine with me because it doesn't actually hurt. After the procedure I feel totally numb on my back and head but also super exhausted because it is a major stressor on my body. On thursday I am going back for a different procedure, Radio Frequency Ablation (RFA). I had it once in my head but I have never had it in my lower back. Honestly, I am a bit nervous about it because when I had it last time I was given 'twilight'' and this time I am not going to have anything. But I will get through it!
In the last 6 weeks or so we finally found a doctor who knows POTS and who makes you feel like everything will be ok. Dr. Suleman works at the Heartbeat Clinic (which has locations in Dallas, Mckinney, and Denton, Texas) and he sets you up with a team of doctors he works with that are amazing! He sent me to Dr. Golder Wilson to help me type my EDS and give recommendations on how to handle it. Then Dr. Suleman sent me to Ron Overberg to help me with eating. I am now on a lot of natural supplements that help a lot, they help better then prescription medications for getting stuff moving again. Suleman also sent me to their resident physical therapist, Kyle Heffner. He gave me some great exercises, but he also gave me some bad ones. He gave me exercises for people with POTS/OH and not with EDS, so the first day I did the exercise I dislocated my ankle and sprained it and then while limping I messed up my other leg's knee. Now I am going to spend a few days in the chair. -_-
My family has been planning a big road trip to the West coast for all of July. They have been planning it for months and I really want to go! Sadly, my doctors said it would be too much for me to handle; so we had to shorten the trip by a few days and fly to Las Vegas to start there. Also, the doctor said that I need to get out of the car every 45 minutes to keep my circulation going. We are taking my wheel chair so that my family can push me around when we go on long walks or I can push the chair until I need to sit. We also are bringing baby food and soup because I can't eat regular food, from the GP.
Until tomorrow,
Hallie Rose
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