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I wish there was a permanent cure AND I wish we knew cause and effect. Come on; this is 2015. My brother has just been diagnosed with lymphoma and his doctors are able to pinpoint the chromosomes involved and target a very specific protocol of chemotherapy. We suffer with facial pain (not life-threatening) and it's near impossible to find a doctor who has even heard of it and who has the medical knowledge of treatments.
I keep a spread sheet to help me figure out what aids with relief and what triggers flare ups. Alcohol is definitely a problem for me, but I think that may be exacerbated by the meds. I can drink a (small) glass of wine now and then, but nothing more. Filling up my days from dawn to dusk doing all the things I love is out. S L O W down is my new reality.
What is most helpful to me is keeping to a regular schedule in taking medication. Previously, I was annoyingly prideful about the fact that I was so healthy (at 62) that I didn't need to take meds. It's really been hard for me to accept that I can't be spontaneous; I can't leave home without my drugs and I can't forget to take them. But then, that has also been a lesson for me to learn in this journey: accepting my new limitations. Working hard to get to a place of embracing the new 'me', instead of resenting, denying, and rejecting this TN monster. Oops! I guess that word means I have a long way to go to get to acceptance.
Hoping you all have a joyful day today.
Rissmal
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June 1
According to my record keeping, I have had 50 out of 60 days with little or no pain on a combination of amitriptyline and gabapentin. After previous four months of intense, unbearable pain, I'd say this is a victory.
So, I am thankful and hopeful.
Wishing you all may find joy today.
Rissmal