Ahhhhh......I knew I could count on your encouraging words and excellent advice. Obviously we're not all affected in the same way, but we each have our own particular difficulties to deal with which makes it easy to empathize with each other. First of all, I seem to have caught a cold from somewhere,
, with the sneezing, blowing my nose every two minutes, etc......Haven't had one of these in years and I can't even blame it on anybody since no one has been here who was sick. This explains some of the extra achiness the past week or so.
Checked out the porphyria and have decided my symptoms don't match up with that.......thank goodness. The blisters on my legs are from the swelling from immobility. The lymph doesn't go back up like it should, backs up and has to go somewhere. It eventually comes through the tissue as blisters. The home nurses are coming back later today to evaluate them and decide if the Unna boots should be used again or something different.
Called my neuro and found out the clinical trial for the new drug that's supposed to help nerve pain will be starting in July and I'm at the top of the list.
I've been to a pain management clinic and they have nothing different to offer than my neuro and pcp all ready tried. As you know, nerve pain is very difficult to treat and I believe that's what really wears me down. Every minute of every day there are "electric shocks" shooting around inside my body and it never stops. Like others here, the weather plays a huge part in the level of pain too. I pray this new drug.....a pill, I think.....works without making me feel like a zombie.
As for the depression/sadness, I've been on anti-depressants for years. Zoloft has been my "friend" for quite a few years now.....150 mg daily. Maybe it's time for an adjustment or change. Then the bladder issues....it's beyond being helped by medication. The next step will probably be an implanted catheter. It sounds awful and scary, but then it sure would be nice to not worry about Hoover Dam letting loose at an inopportune time. One thing at a time.
Thanks for letting me get rid of some of this frustration here and offering your encouragement, hugs and suggestions. It means more to me than you'll ever know.
All my life I've been more of a loner, independent type, which is fine but now life has thrown me....and you....a curve and a few friends would be nice to have. You're all those friends! You've cheered up this "great-grandma" and reminded me that someone does care.
This is why NT is so valuable to "people like us", being able to relate and encourage others in the same boat. Thank you, thank you, thank you. Please try not to stress out too much about what might happen in the future, easier said than done, but keep in mind I've had this monster for thirty-six years and it's just been the past four or so that things have gotten bad. It's really not worth using up your energy worrying about something that may never happen.
Medicine was different "all those years ago", no DMD's, not even MRI's. As the saying goes, "It is what it is" and basically we just have to try and cope (sort of) with "it". 
Linear Mode
