Hi! I was glad to hear from you. It sounds as if you have gotten some relief. Did you have interventional shots, epidural steroid injections? I am glad you didn't get any severe reactions, just as I am glad my mother didn't.
I had one when I was in my initial pain, getting worse every day, but I walked in for an ESI and ended up crawling out and unable to move my legs within two hours and unable to pee within two days. That didn't improve for over a year when I had surgery relieving the pressure on the crushing spinal cord.
I can't take anti-inflammatories as I have had two gastric ulcers and I suffer from GERD and stomach pains.. My official diagnosis was centralized pain secondary to adhesive arachnoiditis with bowel and bladder dysfunction. I only survive on 810 mg morphine equivalent pain meds. That doesn't keep me pain free and there are still moments every day I wish I was dead, just not to feel the pain. But I just putter along walking 0.20 miles per day in 25 minutes. The rest of the day is spent laying down 23 + hours a day.
It's not that I don't believe in God, it is that the questions are too big to answer. There may be a God, there may not be- who am I too say? If you want to pray for me, I just will say, thank you.
My family life is just getting awful. My father was diagnosed in January with a very rare, very aggressive cancer, only 30 or so cases reported in literature. He figures he has seen his last Christmas. I am both mad and very sad about him. It is not that I think he has to have chemo, I wouldn't, it is just that he is already assuming that he can't live more than 3-4 more good months. I just read do not tell patients to think positive as they will no longer want to communicate how they truly feel for fear of disappointing. He told me today that every time we say somehthing about being positive that he feels he has to have chemo. None of us really want him to go through cancer.
My poor Mom spent the last two months taking care of two of us gimps. Dad bought us a condo and now I have to sell the house of which I have no idea how much he is going to help. He is dumping all the work on Mom and me now. He says it is so we learn how to do it while he is alive. Yet I don't know where to stop in terms of how much money to put into the house. We didn't even get the house finished before Dad got sick. It is hard knowing right now after realtor fees, we already will likely lose money as we built this at the heigt of the market
Well that is enough of my crappy life for now. I am glad you have a doctor you feel good with. I have my PCP giving me my opioids because PM places are just not there to help you but to doubt and question and try to force interventional treatments on a disease they don't even know. I wish it wasn't that way. I wish you keep getting the support.
ONBEACHSIDE
donna, just a short note 4 Arachnoiditits. I'll write more when up to it. AA changes the flow of CSF within the menengies of the spine, a form of menegitis. spidering of scar tissue usually in dura. Incurable, pain of cancer with no immenent relief.ð 2308 days ago
I am sorry for taking so long in writing back. I am fighting fatigue all the time. I have not been feeling well. In addition to the Adhesive Arachnoiditis and likely connected, I have had a UTI for over a year now, I have a constant low grade fever and worst of all is the stomach pain. I have to give myself a shot every other day which makes me feel horrible ( sweaty, mid to lower intestinal pains) and for about 8 months now I have been having very sharp pains which get mostly covered by the morphine but pain reaching 8-9 has been occurring up to my shoulder. It fits pancreatitis but there were no stones only the duct that drains the bile is super slow. They are treating it as slow gastric motility and I feel that it may not be. I told my folks I will not be able to live in this way and I mean it. I am going to get a referral to either Shands or Mayo. Mayo is closer in Jacksonville but when I first went there when I stopped being able to void or walk, their so called working together in all dynamics was just a case of neurology trying to get me into drug rehab rather than searching for the problem , which was the Adhesive Arachnoiditis and the need for a pedicle Subtraction Osteotomy. But Shands is 4-5 hours away and Mayo is 1.5 hours away. Any thoughts since you were a nurse?
Are you better still since the GYN surgery. How is Sparks going? I am about the same. I gained back 15 lbs and stay there now. How is your back doing now? Better,worse? Any prospects for improvement? I saw you were going to an Interventional Pain doctor, does she/he help? I saw an Intractable pain doctor as you saw in my page and the liquid morphine has been the biggest help. Also the genetic testing for pain meds helped. I learned most pain meds my body processes 70%-200% faster than the norm and that most antidepressants are just the opposite but slower?
You are the recipient of the Beautiful Woman Award!!
"Once you've been given this award, you have to paste it on the page of 8 women who deserve it. If you receive more than 3, you know you're really beautiful! If you break the chain, nothing will happen, but it's always good to know someone thinks you're beautiful inside and out!"
Again, Congratulations Beautiful!
Thanks for spreading a little beauty, love, friendship, and support into my life!