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The Original Contour pillow [2008-03-08]
is what I prefer. It's easy to find on line now at $18.
This site shows that product plus some other products from that company.
http://www.contourliving.com/p-32-original-contour-pillow.aspx
I felt I should post again, because I don't [2008-08-23]
give anyone the wrong impression in case anyone is following, who may be experiencing the same thing or thinking of starting on these dang narcotic meds for pain. I feel awful this weekend. Thank goodness I'm off for 2 days. It never impacts my work. I mean, its not that bad, but it is a constant sick feeling as if one got kicked in the stomach, or had a car accident - that sort of blunt force trauma feel. I am having lots of headaches now as well. I guess I was just at a good point earlier. Now I am at half my original dose. I wish it could be a bit slower, but I am trying to do this on my own. You are so right, I should go to my PCP about it, but in my experience, the other doctors really treat you like garbage once they know you go to a pain management specialist. There is sadly a lot of stigma placed on chronic pain patients, which is why I feel so badly for others in this situation. I have done a lot of research and see now that this was the best choice for me to make. I may need surgery someday, who knows, and I never knew that one can actually completely be immune to even the most potent IV pain meds if you have been on oral narcotics for years, even at a low dose. I never knew that - this pain clinic doesn't ever talk about anything, just pushes the scrips at us. What a horror that would be if I needed surgery and could not get pain relief after surgery. I'm brave, but not that brave. I have a potential gallbladder thing coming up, as was as GYN procedures that may be in the future, and again, I had no idea. So, I'm here, just not feeling all that perky this weekend. But that's OK, as I figure I'll have lots more weekends to feel great. Again, I am just posting more to let others know that this was not that easy a thing, rather than just wanting to whine at you all again. Peace!
Crissy, I just posted about FBM..sm [2008-07-23]
I also forgot in my original post, i have been on Omega fatty acids for a long time, but it does not seem to be helping me. My doctor and the rheumatologist I saw, well, he told me that my doctor was doign a great job of treating me and there was really nothing he would do differently.
My medication regimen for this awful thing:
Cymbalta 60 mg once a day
Percocet 10/650 mg 1 twice daily.
Xanax 1 mg 3 times a day
Lortab and Ultram for breakthru pain.
I take other vitamins and I also take magnesium.
As you can see, I am a walking dealer for a drug addict and i HATE IT....but I hate the pain more. Stretching exercises seem to help a GREAT deal and I do them a few times during the day.
I also have a myspace page and I have met WONDERFUL people who suffer from FBM, joined support groups online as there aren Everyday, we send each others messages, we chat on IM, some of use even exchanged phone numbers. These gals are wonderful and some have other conditions in addition to FBM and they are the strongest women I know.
If you would like to find out more about the groups I belong to, please feel free to email me. Good luck with everything. I know what you are going through.
Adult-diagnosed cystic fibrosis [2008-03-16]
Hello, everyone.
I For those of you who, like me, though, DID NOT know, cystic fibrosis can be diagnosed in an adult.
I just turned 55, and two years ago (02/01/2006), out of NOWHERE, in the middle of the night I became very ill. I chalked it up to a stomach bug, but I became sicker and sicker during the day. Finally, 21 hours later, when my pain was simply unbearable, I began having difficulty with my breathingand I KNEW I wasn't capable of driving myself to the ER, I finally called 911, and the ambulance came.
I was immediately diagnosed with pancreatitis. The only risk factor profile I was able to fit into was that my triglycerides were elevated. I spent eight scary days in the hospital.
My daughter bought a one-way ticket from Colorado to Pennsylvania where I had lived all my life, and we packed up me, the pets and everything else we could fit into the van and drove back to Colorado. I've been living with her since.
Since my move out here, I've been hospitalized six more times (total of seven), again for pancreatitis.
Finally, on my sixth hospitalization, the physicians seemed to finally be taking my case seriously. Maybe it had something to do with the 6.6-cm phlegmon that was found on the head of my pancreas (which represents approximately half the size of my ENTIRE pancreas), just two months after one of their associates basically regarded me as a drug seeker, told me she didn For whatever reason, they finally began to explore the real reason for what they finally conceded was my chronic pancreatitis. They finally requested the records from my initial hospitalization back in PA. They came clean and said that even though my triglycerides had been previously elevated (they were normal during this hospitalization), they would have needed to have been ten times those values in order to truly be considered a cause of pancreatitis.
Without any prior opportunity to ask questions, without any informed consent and without the words cystic fibrosis ever being spoken in my presence, they decided to have diagnostic DNA testing performed on me to see if I might have cystic fibrosis. This test turned out to be positive. Out of the blue, I received these devastating results one month after the report was received by the ordering pulmonologist (who is unknown to me), by my PCP in an undated three-sentence letter. Coincidentally, according to the report, the test was ordered on September 1, the results were faxed (and mailed) to the pulmonologist on September 6, and I was discharged on September 6.
I admit to being incredibly angry at the way I have been treated in this regard, considering I was uninsured at this time, having been forced to cancel my employer-provided health insurance when the premium increased to literally 50% of my gross income. Before canceling my insurance, though, I did call Blue Cross/Shield, who basically laughed at me and said I wouldndiscriminate. (Ironically, if the GI who dismissed me as a drug seeker had taken my case seriously, I might still have insurance today because, from what I have read, the Cystic Fibrosis Foundation stresses the importance of continuity of insurance and will even help with the payment of the premiums, if necessary.)
However, I The root cause may be cystic fibrosis.
If you or anyone you know feel this could apply, please discuss it with your physician. If your physician feels CF is a possibility, BE SURE YOU HAVE HEALTH INSURANCE BEFORE THIS TESTING IS PERFORMED because once youofficially diagnosed, you can
I just turned 55 four days ago, and I finally have been able to save enough money to rent a car (mine was repossessed because I could no longer afford to pay the payments due to being sick and declining income) and have made an appointment with the nearest Cystic Fibrosis Clinic in Denver (approximately 80 miles away).
From everything I have read, cystic fibrosis is an always fatal disease, and my symptoms are getting worse and worse. I believe this disease is beginning to affect more GI organs because of the changes in pain and other new symptoms I have been having.
I did have some pulmonary problems throughout all this and required oxygen during each of my hospitalizations, except, ironically, the one where this mystery pulmonologist ordered the secret DNA test. (One time on discharge, I was ordered to have home oxygen, which I fought because I felt fine and chalked it up to being in bed in the hospital for 11 days. I challenged the nurse to a walk down the hall to prove it to her, only to discover that my pulse ox was 67%, which quickly shut me up!) However, my primary symptoms were with my pancreas.
I have come to terms with the fact that my life is probably going to end soon, and if anything, I feel guilty for complaining when I've lived to be 55 years of age and think about all the children and babies who either die of this disease before they can walk or live their lives struggling on a daily basis to fight this disease.
If I had been given a choice in the matter, I would not have permitted the testing until I could possibly find a way of obtaining health insurance from SOMEONE (maybe move to a more insurance friendly state or find another means of securing insurance). However, I wasn As I said, I never heard the words cystic fibrosis uttered in my presence. (I found the testing laboratoryInformed Consent for DNA Testing form, apparently required by them. I never saw or signed this form or any other form resembling it. I required a PICC line during this particular hospitalization, and I still have the informed consent with each item checked off that I was informed about, and this paper contains my signature, consistent with my recollection of the events as they occurred.)
I don't want to see any other patient whose profile fits mine go through the devastation of receiving a letter out of the blue informing them they have a fatal disease.
I want patients to be able to be proactive in their care with their physicians, as I was unable to be. They KNEW I had an intense interest in participating in my own care; I requested copies of every lab test, every imaging study and every chest x-ray from my hospital bed when those results were available because I wanted to be kept fully informed of my condition.
Please deposit this information into your memory bank in case it may someday apply to you or someone you love.
CYSTIC FIBROSIS IS NOT JUST A DISEASE OF CHILDREN AND BABIES, AND IT ISN (In fact, the original name for cystic fibrosis was cystic fibrosis of the pancreas.)
The Original Contour pillow [2008-03-08]
is what I prefer. It's easy to find on line now at $18.
This site shows that product plus some other products from that company.
http://www.contourliving.com/p-32-original-contour-pillow.aspx
Pain clinic [2008-02-19]
Well I chickened out on the ESI but got occipital nerve blocks. I am very sensitive to the steroids plus they were going to do it at T1 which is right below my surgical incision. I am dizzy today but maybe it will calm it down. They want to do more but I am afraid I won't have an immune system left. I wish I could find the right med that I could tolerate, cannot take Cymbalta, Lyrica or nortriptyline. The Neurontin gives me nausea. Any ideas would be appreciated. Also if any of you have cervical problems what type of pillow do you use? Thanks again.
Hmm, didn't know you were there. [2007-11-05]
This is how the orthopedic docs are at this office, but my mom has always gone there and isn they made up their minds and were too busy to listen to us.
Excuse me if you don't feel this example applies to the original post, but I was trying to show the OP she is not alone is having trouble communicating with MDs. They often have preconceived ideas and certain words tick them off. Mary has been treated poorly time and again, and I was trying to help her get the help she needs. If all the MDs except her rheumatologist don't think her diagnosis exists, then she has sort of hit a stone wall as far as treatment. If they don't agree with the diagnosis, then I'd want to hear what their explanation is for the pain.
Just because many docs deny a condition exists doesn't mean they are correct. Do you remember a few years ago when all the MDs were denying that H. pylori caused gastric ulcers? It took years before they would treat that bacteria because they had not been told by the traditional researchers that H. pylori was the cause of many peptic ulcers.
Doctors can be very stubborn.
I was trying to help Mary. What about you?
No, the other person following was not killed but the father was [2007-05-06]
and he was the 1 apparently who was confronting, as per my original posting. Living here, you well know there are on the average 2, 3 or 4 killings each and every day. We visted in Florida last year and surprised when not once in a week did we hear on the news of murder after murder. I would definitely in my home let a rude remark just be brushed off.
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