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It's been a long time...
I've been a very sick chick since last year's Easter BP release & removal of my rib by Dr. Annest. (These ducks and chicks are alive aren't they?) Annest performed a great surgery - I found out later from my OR reports that my w/c co. did not authorize my usual pain meds, and no one communicated that to me. Upon returning home, I noticed immediate improvement with no (none) headaches (whew!) and a general improvement in over-all circulation.
That said, the pain was still on a slow but noticeable rise. The pain kept me from being able to bathe (water hurt), brush my teeth, brush out my hair or washing my hair after it was so knotted, changing clothes four times a day due to sweat - and my bed, too. I needed a good nurse, and I was on my 5th really, really bad "nurse" - I felt like I was running a half-way house! And they were CONSTANTLY asking for money without even knowing me...or pronouncing my name right... Finally we got "Lupe" (sound of trumpets, please) - I swear I am able type today because she worked on my hands, and she works on the knots on my back and on my neck - she's just fabulous. She cooks unbelievable. She share my faith, which is cool, she'll take me to small church appt.s if I'm up to it. The bad news is the my private disability inusrance has halted paymnet under a fake clowd of "when is my claim actionable" back in 2002, or after the 911 enactments. IT doesn't matter, I still get paid, but while they argure internally I get nohing. So do I launch an expensive push? I just now got approved by SS. Will it get sent to me? Do I hold it in trust? About two weeks ago prior to the relief I've received from the new nurse and the Topamax, I was considering a drive over to the Grant Boys to make a purchase "just in case." See, my TOS has spread from right to left, then down to left foot, and I also get pain and numbing in my right ribcage, face and now my tongue and front of my lips. My neuros (two said yes, one said no) say this IS the progression of TOS. And it is severely painful. I moan and groan and writhe in bed. I've always had Mustang convertibles in the past. I don't have one now because I don't drive, and Deanna shmooshed the car into a brick wall while parked during the first two weeks of gifting it to her. We sure have a LOT of pictures of a 17 year old blondie getting in & out of a red Mustang...so anyways, I was think that might be a good plan, leaving proper cover, notes, etc., if I got too bed. P.S. 5 months of Lyrica and I'm 50 lbs. thinner without any exercise. Run, don't walk, away from Lyrica bunnies! Although they made me quite capable of hearing some really crazy stuff going on in my life and living through it. Yep, I may be losing it after 4 1/2 years of constant pain. |
Hmm OK girly-
I had to google Grant Boys but I kinda thought maybe it would be what i was thinking it would be.:eek: :eek: So the miracle by name of Lupe has got you away from that line of thinking right? I hope so.::confused: Are you ever able to read on the RSD forum too? It really sounds to me that it might be a higher % of RSD now - if not full on TOS & RSD & possibly Fyromyalgia too. Triple whammy what ever came of the MS or autoimmune testing? nothing? or it didn't happen? Just wondering.:grouphug: :hug: :grouphug: :hug: :grouphug: |
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I miss your interactions and info sharing.
So sorry things are still in such a bad way for you. Prayers sent. Sometimes I wish we could turn back time. cher singing - If I could turn back time ....If i could find a way ... oops that's all I can remember of the lyrics so far! here they are if anyone is interested - http://www.azlyrics.com/lyrics/cher/...nbacktime.html |
I hope the latest surgery will bring more relief when things settle down !
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Tamara,
I don't understand the 5 months of lyrica and 50 lbs lighter? If anything lyrica has caused me to gain nearly 50 pounds. PS my rib-resection was April 3 last year right about the time of yours. Sandy |
I think she meant 5 months OFF lyrica.
quoted [Run, don't walk, away from Lyrica bunnies! ] |
Thank you!!!!! I considered that as a possibility. I hate lyrica, just went downstairs to take one myself i'm having so much pain today.I usually only take one at night.
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It has taken a long time to get back here to check in again...and again due to high, high, high pain. Lupe works tomorrow, and I am hoping she will bring me some relief. Just by luck, she takes PT classes at night, and she's truly gifted at smoothing the muscles down - I get those grape sized knots.
I was thinking about having an "out" - just in case I am headed for a nursing home - but then I again thought about my girls, and the legacy that leaves them. But this pain is bringing me to truly crazy places after 4 1/2 years, and after my pain doc said there is nothing more he will do. Period. He went from compassionate, to a real jerk, frankly. My primary though said he'll do another round of Botox, and try some nerve blocks. The Botox was done one side at a time, so I only had 2 weeks true relief of overlap. I'd like both sides done at once. I'll start a Botox thread, I think, because I did find short but very good relief - not complete, but a lot of the shoulder blade, neck, top of shoulder - the injections were throughout the back areas. Besides now fighting my longterm care (and it's the new work comp law of 1/03 or 1/04, not 911, I was in so much pain when I wrote my post) anyways, they are proposing an inaccurate legal argument, but where do I get $5K to fight them for a retainer? And one doesn't represent oneself - I don't know LTD laws. (I know work comp, bankruptcy, family law, some criminal, civil lit, foreclosure, eviction and business torts - that's enough! For me to put anything in writing, I really could screw myself.) So thank you to each person for a response. I am going to TRY to get on here more often. I do miss you all. Laura, Allison and Cyndy please know I saw you called, but was in too much pain to call back since my last messages. My jaws, teeth, ears and hands hurt so much. Also, pains in my legs like growing pains. Does anyone get those leg growing pains? I did wonder if it was RSD and/or Fibro, which a couple of docs diagnosed, but my primary neuro and pain doc are ADAMANT that this is a progression of the nerve damage in my neck areas BP areas from TOS, and that they do include the legs. (Annest does NOT believe legs can be involved.) Oh, the contradicting docs, huh? Thanks to all. Please get Neurology Today sent to your home - it's free, and it has great neuro articles and some apply to us. No TOS articles - YET. Hugs. |
Tam....
I'VE BEEN SOOOOO WORRIED ABOUT YOU AS I'VE LEFT YOU SEVERAL MESSAGES OVER THE PAST TWO WEEKS AND HAVEN'T HEARD ANYTHING FROM YOU. I ALSO EMAILED YOU. DO CALL ME, DEAR!!!:hug:
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Tam, so so glad you've been able to post - have wondered how you were making out. Awesome that you (finally) found good in-home care.
I too keep thinking that I'm eventually heading for a nursing home. It's so depressing to consider. But you are absolutely right - you could be setting an example/legacy for your girls. The thought that keeps me from the "out" option: there could be others in the nursing home who need encouragement, a friendly ear, or a good belly-laugh. I can help. As long as there is some small thing I CAN do, I have a purpose here. Damn the pain. I may lie in bed and cry for 5 days straight, but if I have 1 day that I can be helpful... then worth the pain. I wish I could send you $5K. Would an attorney work for you with the promise of payment upon reciept of SSD/WC? Much love and prayers for relief, :hug: Anne |
Anne and Tam- Please listen!
Girls, you know I've been where you are, and felt the same way - only my family and my faith - and at the hardest points, only my daughters, kept me from checking out, cause who wants to keep keeping on when your entire existance is pain?
I'm still not convinced you aren't experiencing RSD, Tam - it sure sounds like it to me - the sweating, burning, spreading to the legs - much more than TOS. I tried everything to get the RSD calmed down after TOS surgery - that's when it really got nasty, just as you say you've been so sick since surgery last year. You need an RSD specialist! The one thing that did help with the RSD was ketamine - took the RSD pain to zero by day 3, and at 2 weeks later I still was a 3-4 out of 10. Kept most of that relief for 6 months - through the WINTER - with booster treatments. But it didn't stick for good, and the ins. co. denied coverage, so gradually I am seeing all sx returning. However, what has made a HUGE difference in quality of life is my SCS - I can't tell you how much it has reduced the pain, as well as improved my sleep, my mood, and returned me to more of the person I used to be. I still have to be good, can't do a whole lot more with my arms or I pay the price, but day-to-day life is so much better! The SCS I have is by Advanced Bionics, they also make the Cochlear Ear Implant, and my Dr won't use anything else for upper extremities. I have an electrode for each arm that covers from fingertip to shouldertop and underarm, and a handheld remote that allows me to increase/decrease stimulation. The program is set individually in the OR during the trial surgery to find the coverage that works for you, so if it won't work for you Tam, they will find that out then. But it IS different than external TENS, because this stim is internal and is going directly to your motor cortex and blocking the pain transmissions from reaching your brain, instead of coming from outside and competing with the pain signals. If it gets uncomfortable you just bring it down a notch or so - you soon learn where "your" zone of comfort is. I have mine on 24/7, and re-charge the battery every 10 days or so - takes about 3 hours, I can wear the charger under my clothes while it's re-charging, it's small and slim. ANd the life-expectancy of the battery is 10-12 years, according to what my Dr has seen, which is a big improvement over earlier models. If your pain Dr will do nothing for you, it's time for a new pain Dr - that's barbaric! Please, PLEASE consider what I've written, and if I can answer any questions about the SCS I'll be happy to. It's been such a blessing for me, and I HATE to see you both still suffering so. Much Love, :hug: beth |
Tam
Dear Tam,
I am so sorry that this battle goes on and on. I pray everyday for my long list of friends that are in pain. Even in your pain you took time to write a beautiful card to me. I often pull my cards out and read them. I am so gald to see that you posted an update, and just wish the news was so much better. It is great that you found Lupe, I hope she is with your forever. I am sorry to hear of the mustang....that has to hurt! Be strong, Di |
Hi Tam
It's me ( back after a long time), have not managed to catch up properly but just to say sorry that things are still nit right for you and that you are having lots of battles. I am thinking of you like I do evryone I have met on forum. Lupe sounds like bliss. My best wishes and gentlest hugs. Hx |
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