100% Agreement

[Lisa K.]

Hello ghughes,
This is my first post on this site. I feel such empathy with you...I've had serious chronic pain for 15 years, due to a birth defect that finally began taking its' toll. When I began to have severe radiating pain down my leg and into my foot - so bad that I couldn't sit, my life began to fall apart. I was always a big, strong, very fit woman who didn't take any kind of medication for any reason - I didn't need it! Aside from giving birth to two fine sons (natural, no pain meds) I very rarely felt that I needed to take anything. So, when I started to have this kind of pain - which began with a pain in my hip that wouldn't go away, I ignored it! Of course!
To make a very long and tortuous saga slightly shorter: I saw many, many doctors in many settings: military (at the time we were active duty), civilian, and finally I went to the pain clinic of what is considered one of the very finest medical schools in California. I was treated with suspicion and distaste from the beginning. I went to that pain clinic for three years, trying to get relief or any kind of real help for the pain I experienced every day all day. I read somewhere how someone described a similar experience like this: "In any setting other than a medical one, what I experienced was torture". And that is exactly what happened to me. Most of the doctors were cold, clinical, inexperienced, and because they were rather flummoxed by what EXACTLY was causing my pain, they were very dismissive. I never did get any help there, and very few answers.
Meanwhile, my mental health took a serious nosedive. I had to stop working, I began to drink WAY too much to deal with the screeching pain that never went away, I couldn't sleep; well, you know the drill. I let THAT go on for too long, too. My entire life as I knew it came to a halt. The one constant was, and is, my husband...who's the lucky girl? All this has been very hard on him, too. He has watched me deteriorate, and has had all the financial burden as well.
All this to say: I know what you're talking about, and I'll be right here. You are NOT alone.

[ghughes1980]

Thanks Lisa, after finding this community and finally finding affordable talk therapy these past 3 months have been "better". Having some supports has been awesome. Without support systems I think I would not be alive. What I'm still finding difficult is the time between treatments when the Botox wears off and there's still 30-45 days until the next treatment. I had my orthotics looked at and adjusted on Tuesday so there's a bonus I guess, I might have a decent August before my next needle in September. Anyone else have experiences with Botox not in a cosmetic setting? I'd greatly appreciate any tips for the times when it tapers off.

[ghughes1980]

http://youtu.be/Km4f-eRE4Kc

This robot taunts me! I hate you Astar! I really do, the people that made this PSA are bastards.

[ghughes1980]

Treatment day today, this would go a lot smoother if my arm was just gone. It would save everyone the trouble.

[manuel_moe_g]

Hello ghughes1980,

Hang in there. You are 100% a worthy valuable person. You add so much to this forum, because you speak from experience from pain. We cannot pay back the gift. All the best. We are thinking of you.

[ghughes1980]

Well I've now been passed off to the University waiting list because the clinic really doesn't know what to do. This is just great (sarcasm obviously). 6 month waiting list and $250 per year cost (up front). I hate being passed around like a hot potato. I don't get why this is complicated for professionals to grasp.

[manuel_moe_g]

I know what you mean. I am supposed to greatly cherish professional help, but I am profoundly disappointed in the level of professionalism, even when the cost is not small. So I dive into self help. I like http://www.reddit.com/r/dbtselfhelp

Sorry that mental health professionals have put an extra burden on you. You don't deserve it - you deserve better. Please take care.

[quickfall]

So am I correct to understand that they took you from being an active patient to putting you back on the waiting list?

I don't know the rules in Canada, but irrespective of federal/other laws, that's INCREDIBLY unethical. I don't know what sort of sanctions/organizations there are in Canada, but christ...there's GOT to be something that makes that sort of behavior a huge no-no and therefore reportable.

The correct action for them, if they don't know what to do, would be to refer you somewhere. You're well within your bounds to tell them you want a referral to a better provider/clinic that is suited to your needs if that's a possibility. Even if they can't find anything, they should do enough work to that end so that they can definitively say they looked "everywhere" and couldn't find anything. Putting you back on the waiting list is beyond belief...I can almost guarantee they were the people who barely passed in graduate school.

[ghughes1980]

I've been referred to the university by the clinic I believe because the staff feels that any solution they offer is of a temporary solution. I guess they feel the university may have more concrete solutions. I don't think there is anything fishy here I just feel sort of put off by the way the referral went down I suppose.

[ghughes1980]

The story continues....

So I started seeing another therapist half way across town and doing weekly physio on top of that. I still don't feel any better but the new guy seems to think I'm doing well. I'm still not sleeping regularly (I get about 3-4 hours, with the last hour being the most restful.) I can judge that because I usually wake up and have to adjust my finger rings. At my physio appointments I'm getting these electrical treatments which seem to do a little but I dunno. I think I'd have to sever the nerves completely to get a result I'd be happy with. If I could get some rest it would be nice but I guess that's not in the cards without habit forming drugs sigh.