I truly wish that I was kidding! :-(
I have a truly awful collection of conditions (all related to one another) -- started with Chronic Pelvic Pain Syndrome (feels like being kicked in the balls, hit in the rear with a baseball bat, and then shot in the leg while someone takes a blowtorch to your hip sockets) and that in turn spawned Reactive Arthralgia AKA Reiter Syndrome, which has left my entire body head to toe in constant searing pain. Add in frequent nausea, periodic vomiting (despite the use of multiple strong anti-emetic medications and unaffected by changes in my pain med levels, so it's not directly related to opiate usage) and some other fun stuff I won't bother to list here.....and you've got roughly where I'm at now.
I could literally write a book to list all of the symptoms I have, they are so insanely numerous.
Even though the Mercy clinic rejected me -- saying they are only "interventionary" (shots, surgery, implants, etc) and I should have a Rheumatology consult (I still haven't been able to find a local one in Maine, everyone including my doc knows that there's basically no good rheumatologists in Maine, at least none that will get someone with MaineCare through their waiting list in under a year!!!!) -- I still have my wonderful primary doc, who will keep me at least not too much worse off than I am now until we can find better options.
I may have to go to Boston/MA/NH to find a rheumatologist worth seeing. Which is obviously not an ideal situation with my wife so pregnant, us already having one very young child, and me pretty much totally unable to work.....
And finding a good pain specialist is also going to be vital. I just don't know who out there would take me in my situation! Most application forms don't take into account things like the fact that I have a pregnant wife to take care of, with what little function/mobility I have left. I think if I could find the right doc, and get him/her to understand the full reality of my situation and my condition, they would hopefully be able to make just enough changes to make a real difference in my ability to be there for my family over the next year or so.
Beyond that, I am willing to have an
open mind to what that doctor, if he/she is really the right person and has demonstrated that I can trust them to do right by me & my family, wants me to do from there. Frankly, despite the Everest-like challenges of my case, I am pretty much ideal for a pain management patient; I do everything that is asked of me, I don't do anything wrong, all I want is to be there for my family. I have toughed out numerous reductions/changes in my meds over the past seven years and even went completely off of them twice before this last run of almost three years.
I'm sorry to post up a storm in this thread which isn't even really supposed to be about
me.....but as soon as I saw the discussion of pain clinics/specialists in Maine, well, I had to jump in with what relatively little (if you can believe it! I used to write for a living, dozens of pages a day easy!) typing stamina I have left and try to find out if there are any other options/names I can look into here.
I need someone/something which accepts MaineCare, which makes doing out of state care difficult if not impossible. But as I am learning, it is very hard to get basic, vitally important specialist consults of any real quality or usefulness (if at all!) here. As if MaineCare's outrageous rules and PDL choices/omissions weren't problem enough!
Thanks guys for being so understanding about
my sudden and probably somewhat overbearing presence in your thread
If there is ever any way in which I can be of help to you, please, let me know.....I would be honored for the chance to put all that I've learned through this monumental suffering of the past seven years to good use helping alleviate at least some of the suffering of others. It gives my struggle added purpose, which I think we can all use as we battle to resist depression, despair, frustration over the endless insanity that is "medical care".....
Conditions: Chronic Pelvic Pain, Severe Lesioning of the Spermatic Cord, Reiter Syndrome (Reactive Arthritis and Myalgias along with a slew of other symptoms), Sacroiliitis, Costochondritis, widespread Tendonitis, and on and on. Typical daily pain levels exceed 8.5.
Medications: Oxycodone, Dilaudid, Lidoderm (lidocaine) Patches, Flexeril, Soma, Testred (testosterone capsules); many herbs & supplements.
Previous medications: Opana ER (12 hour time releasd Oxymorphone, Endo Pharm.), Fentanyl patches (two 100mcg/hr patches worn simultaneously, changed every two days; Mylan generic solid polymer patches), Cymbalta, Lyrica, Neurontin, Amitryptyline, every NSAID known to man, Prednisone, and many more.