Hi Tracy Lynn:
I realize what you have written is long ago and possibly you won't see this message. I don't know if you still are active here. This letter is also geared to many others who experience and feel the excruciating pain and I would like to share with you my story. Firstly, pain in itself is something everybody feels differently. It is very difficult to describe what chronic pain to many other people who do not know what it is. People think pain is pain and you will get over it! This is pure nonsense and unless they happen to have it. Everyone feels pain in their lives. It is also a warning sign that something that may have to be taken care of. When you break a leg, hurt your back, heavy excercise, and have surgical procedures, a fight, etc. you will feel the pain and it hurts. You can't wait to get relief by doctors prescribing pain medication for short term. It does help to alleviate the pain so you are able to do things to carry on your life. Physical therapy also helps to strenghthen muscles as well as heat, massage and meditation. There are so many variations, it is hard to describe it all. When you double up with pain which means to me that it is so severe, that you are not able to stand up, concentrate, and even sit down, then it is all out pain. Since there is a pain scale from 0 (no pain) to 10(excruciating pain) and everything in between, when you are asked to where you are what level, that is a good measurement tool. Doctors and nurses want to know this. If you are admitted in a hospital, you are asked what pain level you are at. Anytime you have surgery, this is asked of you. True, any type of surgery which even can be minor or major, generally you are fed by IV morphine or some other narcotic to reduce the pain so at least you are able to rest or sleep. This is generally the protocol depending upon what type of surgery you have. Usually you are on these IV meds for 24 to 32 hours and then you get oral medication for a few weeks until you need no more. It doesn't mean that afterwards that you will feel no pain. Even after several months you can feel some pain at times but it is reduced as time goes by. You carry on with your life and do what you are able to. Pain should never hold you back and make you feel like an invalid. Easy said than done. Look at a pregnant woman who is about to deliver. She feels the worst pain imaginable. It falls beyond the 10 level. Any woman will tell you that. Men generally never feel this kind of pain unless you are giving birth to a kidney stone and even if your gall bladder is so bad, the stones are telling you something. I never had a heart attack, thank GOD but I did have a hooked kidney stone tearing my uretha and the worst gall bladder attack that is even hard to describe. Definately, you end up in the ER and be admitted to have surgery. At least this was done in the day meaning that I am a much older person. Medical technology was still in the infant stages and hospital stays were much longer than todays 3 day stay. What I am trying to do is paint a picture before I go on with my story. I don't mean to bore you with so much detail but typing this is therapy for me. Of course you understand what I am sayng or you wouldn't be here. In no way am I suggesting that you don't know this because you do. Your all intelligent to know that.
Like I said I am an older person pushing 76 and I know what chronic pain is. How about if I tell you this started way over 20 years ago; in fact as early as me being 27 or 28 years old. I used to work in communications technology and my job was very diverse. One day I was on a scaffold in an auditorium about 30 to 40 feet high hanging speakers. When screwing the speakers on the ceiling, that is when Ifirst started to feel pain in my arms and couldn't turn the screwdriver. It was hard enough to reach up to the ceiling and felt like I was losing balance. As a matter of fact the scaffold did not really make it easy to reach the ceiling as it wasn't tall enough. I had to hold on the railing to keep from falling over. Imagne if you will, that standing on your toes trying to reach up with one hand. It was pretty hard for me. I finally did install the speakers but took me a long time. My confort level deminished as well as my confidence. You see, arthritis runs in my family and my father had it bad. He was an electrician by trade. Lets move up in time. About 20 years ago, I started to feel pain on my body and I couldn't shake it. Everywhere I touched, it hurt. I went to a doctor who was a rheumetologist and tested me by proding and poking varies pressure points and he said that it can be fibromyalgia., He prescribed Vicodin and have been on it until about a year or two ago as I had to be put on stronger narcotics which really didn't help much. Other meds were Oxicodone, morphine, Dilaudid, and duragesic patches. The best has been the good old Demerol but not used much today. I have been to several doctors who gave me trigger injections and me feeling like a pin cushion. I really hated that. It gave me some relief for about 2 or 3 hours until it wore off such as having a tooth pulled. This was the regimen that I endured for every two weeks. My blood work showed that my SED or sedimation rate was very high like 132. It prooved that I had inflammation. My doctor gave me low dosage Prednesone for a year and brought the SED rate down. Still I was experiencing lot of pain. I had all kinds of blood work and she was going to put me on Embrel. I didn't pursue it because it was expensive and insurance would only pay for a fraction of it. I would have to shell out at least $1000 a month. She then game me methotextrate which was very strong and generally prescribed for people who have autoimmune diseases such as HIV, cancer, etc. I got sick right away with nausea and general ill feeling and stopped it after a week. So now I supposedly had an autoimmune disease of what I did not know. I have been seeing this doctor for about 2 years and finally she wanted to put me on IV Remicade. Another potent medicine. It would have cost me a lot more than Embrel so I couldn't do it either. What doctors don't understand is that how expensive these medications are. There are really no generics. My doctor refused to treat me any further because I didn't follow what she was suggesting. Sometimes doctors seem to take it personally. A few years later, my pain was starting to increase and MRI's of my neck and back was taken and surgery was the only option to fix my bad discs in my vertebrae and fused my neck as the vertebrae needed fushion. Both surgeries were hard but the neck was the hardest for rehabilitation. Wearing a neck brace is no fun and I felt like one of these dogs who wear a collar to prevent them from scratching their wounds. The looks I got from people were really annoying and the kids came up to question me, "how come you are wearing these things and is this what you wear for Halloween?. They also would laugh and make fun. That didn't bother me as much because they are kids and kids are very inquisitive. You know that. But still I got looks from adults but they generally didn't give it much thought. Oh, how as human being are we subject to ridicule. Let them deal with these surgeries and see how much they feel. Now to continue on.....
I don't know how much I can write here as there may be a limit. Well, I will go on until I can't go on any more.
After 2 back surgeries and a neck fushion, more things began to happen. My extremities were getting numb while standing and my balance veered. I then went to a Neurologist and I had more blood work, nerve conduction studies , EEG's, and MRI's. It was determined I had peripheral neuropathy as more complications. When moving from So CA to Las Vegas, NV, I had to continue with seeing specialists More MRI"S CAT scans and other tests were done. Heavier pain meds were prescribed like Oxicontin, Oxycodone, and Duragesic patches to help with my pain. It was determined that I had nerve damge and nerve degeneration exposing the nerves to the outside world. Right away I was sent to a Neurosurgeon and the only thing that came out of his mouth was Neck surgery. I said no, no, no. You are not operating on me. At my age, it could be serious and I would have to be in ICU for a day with a line in my neck. You know and I know that their is danger in that. He had nothing more to do with me. Yes, I had all these complications and none were specific. One Neurologist I went to gave me more tests and determined I had CIPD which is a bad disease and prescribed IV Gamma Gobulin which would have cost me $5,000 for the first 5 days. No way could I afford and that is even when the insurance would pay 33% of the cost. I was told I would have to be on it for 3 years and given once a month. Whoo Haah!! Forgit about it. So, a nerve stimulator was put in and did nothing for my back and neck and shoulder but only my legs which incidentally did work on that. Big deal! The only other thing it did was to stimulate my genitals. I couldn't get it up anyway. ha ha Here is another $200.000 for trial and permanent insert. Both 3 hour stay, both outpatient, one in a surgery center and the other in a hospital. Meanwhile, various pain medications were tried to no avail. Moving from Las Vegas to Seattle was next and the doctors here say I now have not only degenerative nerve disease but other things as well.
Mood problem 11/05/2014
Memory problem 11/05/2014
Heart failure 11/05/2014 (how that got in I don't know}
Underactive thyroid 11/05/2014
Chronic pain 11/05/2014
Difficulty falling or staying asleep 11/05/2014
Restless legs syndrome 11/05/2014
Sleep apnea 11/05/2014
Heart disease due to blocked artery 11/05/2014
Transient alteration of awareness 12/22/2014 (sounds like a sci fi)
Ankylosing spondylitis 04/24/2015
Chronic kidney disease, stage III (moderate) 05/11/2015
Skin inflammation 05/12/2015
Difficulty swallowing 06/17/2015
Periodic limb movement disorder 07/20/2015
Loss of bladder control 09/10/2015
Skin inflammation 09/10/2015
I forgot some others but this is enough, don't you think? I really have a long record. Most doctors I see just tell me either I am a mess or too much complication of what I have. It's about 0212 and I am getting tired and before I finish, I will save what I have and go to bed. Sayonara.