Hi all,
This is my 1st post and first time here. I have read a few stories already and can relate to almost all and have answers for same!!! I din't even know where to start, am 57 years old, have been disabled for 6 years, this being the result of 2 failed back surgeries from lousy surgeons. I am married 36 years, a miracle in todays world, have 2 grown kids and 2 g-daughters. I have been a jewelry designer for 17 years. I believe at this point that is the only thing that keeps me sane.
Up to 4 years ago I was an atractive, working, happy woman and now I can be in a freak show. This in no form is a pity me post, as I am sure everyone here goes thru bouts of depression, well I have been in a hole so deep for 6 months I cannot get out. Things wrong with me: sciatic nerve is totally compressed by inches of scar tissue, it is 3/4 covered so there is little blood flow and 24/7 extreme pain, have severe (notice everything is severe, I am always told by dr.'s that is the worst I have seen!) RSD, to the point of getting open ulcers that don't heal, have peripheral neuropathy down left side, advanced RH.Arthritis, ulcers/IBS, tumor behind left retina, 3/4 blind, not operable, severe migraines, severe scoliosis, cancer survivor, just had a stroke last month and three minis the past 2 weeks. I am on my 2nd morphine pump, the first became detached, it migrated for 3 months before I could find a surgeon to see me because original surgeon said it was no big deal, well the big deal just happened to rub the muscles between my 1 & 2 ribs to chopmeat, so I now have a huge hole there and constantly fall to the left side. Now this pump, which is also on the recalled list is sticking out like I have a flying saucer ready to burst out. It is extremely painful, also giving me bladder problems, which I already had, and is pressing up against my stomach so I always feel like I just ate a full meal. I have seen another surgeon who wants to put the rod up my back w the electroids, but I am hesitant because she is not sure it will do anything for the nerve pain, it would be for the lower back pain. Now they r putting that off due to the strokes because they do not know what is causing them. Most dr.'s don't want me as a patient because i am allergic to just about every drug known to man! I can take 1 antbiotic, I have been on Endocet for 4 years because everthing else they give me I end up in the e.r., swollen tongue, swollen face etc., so they r actually afraid to give me anything. I was given 10mg. of Soma, I took a 1/2, 45 minutes later I was unconscious on the floor, so I really believe they r afraid of me!
I currently take 7 Endocet 10/325 a day, 4 5mg of Percocet, 3 10mg of Valium and 1 10 mg of Elevil, plus nexium which is a waste w all those pills. I have delaudid and Biprivicaine in my pump, with all that I live a daily 10 pain scale, and that is a good day. I am totally housebound, except for dr.'s, which I have grown to hate-LOL, because I just keep getting worse and worse. Then they have the nerve to ask me why am I depressed????
Not only do you have to be the one to take the steps but I am thinking of getting this RSD device/pump. I have suffered many years in pain. Having neuropathy as well along with Fibro I have been to 57 Drs in the last 3 years. I would just get up and walk out with in the first 5 minutes of meeting the DR. You are the one who pays them to do a service so treat it like that. Dr.s depend on you and your insurance to make it work honey. Dont be afraid to tell them to set down shut up. dont be afraid of a dr that says I dont have all the answers but we can sure work together to find out. There are many that told me I was just an addict for pain meds well no but when you go from taking one pain pill maybe 1 every 90 days to taking 90 in a two week period somethings wrong. They want to tell me whats wrong with me, they are not us. So if they cant set and listen to what I have to say and yes make a plan or be willing to try anything at this point, Walk out. I dont care if it take 100 drs in a year. Dont stop hope. We are fighters and looking out to someone to talk to, with no life and caged in your home you feel as if youd be better off gone, so no one has to deal with this crap anymore, easier for everyone. But no we stand and fight so others can be healed as well. Go to the news media start there to see what happens.