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About Me
freendeed
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About Me
I'm early 40's with chronic health problems dating back to childhood. Good years through teens, rough since early 20's on. Have good times and bad (but don't we all!). I love reading, movies, music and above all my family. My "philosophy" is in my username: "If the Son makes you free, you shall be free indeed".
I'm early 40's with chronic health problems dating back to childhood. Good years through teens, rough since early 20's on. Have good times and bad (but don't we all!). I love reading, movies, music and above all my family. My "philosophy" is in my username: "If the Son makes you free, you shall be free indeed".
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Support Groups
Close Sleep Apnea
Had cancer of spinal cord at 10. Am now early 40's. Was told I had not "slept" (passed 2nd level of the 4) since I was 10. Feels like it. Tried CPAP. Central apneas triggered. Switched to BiPAP autoSV. Having trouble tolerating. Headaches. Pneumonia-like feelings after using. Looking for HELP!!!
Treatments
- Astelin Somewhat Helpful
- Seemed to work good at first. Having been using 2 sprays BID though so going back and see if that helps.
- CPAP Somewhat Helpful
- Am almost up to my therapeutic level (9/9/19). Haven't received much help yet but am hopeful. Even in the sleep lab I only occasionally reached the 3rd level of sleep but still never the 4th (which is where you get true "rest").
Close Chronic Pain
I've had chronic pain for almost 20 years and I need new ideas and support.
Treatments
- Chiropractic Adjustment Not Working
- Not advised with all my orthopedic work.
- Cymbalta Not Working
- Gave me tardis dyskenesia due to other meds I am taking. Took it on it's own and don't remember if it helped that much (apparently not).
- Flexeril Not Working
- Baclofen is the only thing to work so far.
- Heat Working / Worked
- For the crawling pains in my stomach this will sometimes work when even strong meds won't. But I usually have to rely on a form of accupressure which works good but is impossible to do it and sleepp.
- Hydrocodone Working / Worked
- Good as an adjunct to stronger meds.
- Lidoderm Not Working
- Lyrica Working / Worked
- Currently seems to help.
- Marijuana Working / Worked
- Didn't work for my pain but literally saved my life when I was in Hospice and was "going down for the last time" (I felt). Got my mental focus back in order and allowed me to eat. It's a crime this isn't legal and you should be able to grow it yourself.
- Meditation Not Working
- Actually makes pain worse. I've subconciously developed some kind of "posture", for lack of a better word, that helps and trying to "relax" my lower muscles (the ones beyond my paraplegia) makes pain worse.
- Methadone Working / Worked
- The best thing I've been on so far.
- Mobic Not Working
- Caused spasticity to increase.
- Morphine Not Working
- I'm terribly allergic.
- Nerve Blocks Not Working
- Didn't work and the injections (due to a sadistci doctor who believed lidocaine was "just another stick") were as bad as the pain sometimes. I have thich scar tissue over my whole spine to the point he literally had use his body weight to puncture the needle through it (no lido remind you). It's the only time I can remember tears literally bursting out of my eyes.
- Neurontin Working / Worked
- Seemed to work years ago but haven't tried it in years. (Am using Lyrica now).
- Oxycodone Not Working
- Physical Therapy Somewhat Helpful
- You have to have the right therapist. Too aggresive and I end up in the ER.
- TENS Not Working
- Even turned it up so high you could see the muscles contracting in knots under the skin but never helped.
Open Brain / CNS Tumors
Type: AstrocytomaThough my cancer (astrocytoma fo the spinal cord) has been in remission for over 30 years all the damage was already done so I live with incredible chronic pain among other things. I'm here for new ideas and support.
Treatments
- Radiotherapy Working / Worked
- Stopped the tumor but radiation nercrosis for over 30 years has caused increased pain. Also, have a subarachnoic cyst. The radiation also killed the vertebra which caused sever scoliosis and multiple orthopedic surgeries.
- Surgery Not Working
- Had a DREZ procedure (Dorsal Root Entry Zone) to try and relieve the burning pain in my legs. I walked into the hospital and woke up from the surgery with the pain intact and permanentaly paralyzed from the navel down.
Open Paralysis
Type: Paraplegic (lower body)For tips on dealing with long-term issues with paralysis (from navel on down).
