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    Old 06-11-2013, 09:29 AM   #1
    Annee07
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    Location: The South USA
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    My CP Story

    [sorry it's long: I cannot edit right now]
    My son and I was in a near fatal car accident years ago. Thankfully, besides a traumatic event, my son only had bumps and bruises, because I took on the brunt of the impact. Doctors told my family to prepare themselves; because of the multiple trauma & internal bleeding, I might not make it. I was administered approximately 11 units of blood between two hospitals. After many prayers and several weeks in ICU, I pulled through & was transferred to a regular room. The injuries were as follows: broken femur, shattered pelvis (involving the left iliac wing, acetabulum, and ball and socket),left hip deformity (inward rotation of the left leg), widening of the sacroiliac joint, a shattered left elbow, broken ribs and a bruised kidney. Once I was transferred out of ICU and into a regular room, it became an agonizing waiting period. I was in traction for weeks and this method was supposed to pull back what was left of the femur head out of my lower abdomen. Had it not been for the support of my family & faith; I do not believe I would have come through this with my mind intact.

    I was nearing the end of my 2nd year in college and enrolled full time when the accident occurred. All my plans had to be put aside; because becoming mobile was my new goal. Over the years there were several surgeries to remove all of the hardware. In the beginning, doctors predicted I would develop, and eventually, I was diagnosed with degenerative arthritis. In early 2,000, I had surgery to remove a screw because it was traveling through to the other side of the tibia below the knee and had a torn ACL repaired. During my post-op visit my Ortho. told me this surgery may only relieve some of my pain concerns for a year or so, the cartilage was gone, & I’d eventually need a knee replacement. He also said he did not do hip replacements on patients until they are older because of the mortality and failure rate on that of younger patients. He proceeded to tell me I was going to need a good pain management doctor. At that time; I began seeing a pain physician and he was trying to set up an SI injection. My Orthopedist was opposed to this because I had somewhere between 200 – 300 x-rays (and many CT scans). He said this procedure (at the time) would be done under X-ray and there was not enough of a guarantee that it would help.

    Through my research, I learned about the longer acting medications that were doing wonders for patients in my predicament, but I had also heard of the problems in the media. I began corresponding with a doctor in Houston by the name of J. Hochman, MD who was a strong advocate for the rights of chronic pain patients and founded The National Foundation for the Treatment of Chronic Pain. He enlightened me on the problems we faced surrounding pain management and had also suggested an evaluation and consultation, if I was able to come to Houston for my visits. Through my research, I was starting to see this was a common theme among chronic pain patients. I was reading and hearing terms like: “the pain patient merry-go-round.” I began seeing a new pm Dr. & he agreed to take me on as a patient after several visits, exams, and becoming familiar with me and my life. My husband started A PT business & took on a new job with good benefits, because I was being denied health insurance. My husband who didn’t as much as take a Tylenol for a headache was unsure about pain management and even more unfamiliar with it as I had been. He now often recalls that I was essentially becoming bed ridden and giving up on life. He says it was like I didn’t want to physically move at all. During my short stint with my new Dr., I was informed about medications that were now available for chronic pain & he gave three options & we decided on one. I was diagnosed with IBS & stress ulcers & doctors were (earlier) ignoring this fact & prescribing NSAIDS. A few months into my treatment under the new Dr's care, I was informed he would be closing his practice and moving back to his home state. He went on to tell me that the conditions surrounding “pain care” in my state were grim. He wrote what he called: the “pain care guidelines” and personally delivered it to our governor. It was his hope the guidelines would be read and given consideration; but in his words, “I doubt it will ever be opened!” Needless to say; I was once again in fear of what lay ahead involving my treatment and life. I had briefly experienced a life restored to some dignity and productivity.

    When considering the nature of the various illnesses, tests, doctor’s visits, and procedures I endure outside of pain management, I cannot express enough, what my course of treatment has done for my life and spared me from. Sometime after the accident; I started developing more illnesses and some of which are very rare. I was diagnosed with “Shingles” at the age of 27. Little did I know; there would be more to contend with on the horizon. In the last decade; I developed enlarged lymph nodes, Pleva, Endometriosis, Epstein Barr Syndrome, and just recently had a rare tumor removed. During my never ending search it seems; for a diagnosis of a peculiar rash that developed several yrs ago, I was told by an immunologist that testing of blood was in its infancy back in ’90's and was not perfected until some years later. He decided to run Aids, Hepatitis, and various other tests. Fortunately; all tests came back negative with the exception of Epstein Barr, and questions remain about the increase of rare illnesses I’ve developed over the years. Several specialists later, a punch biopsy was performed, and I received the diagnosis of a rare illness called Pleva. Although the medications I currently take have managed my pain and allowed me to be mother, business partner, and productive, there are (still) days the pain wins.

    The life of a CP patient can be very humbling. I’ve endured demeaning pharmacy encounters early on, as many of us do. This is a story in and of itself. In spite of all the “pit-falls” that surround treatment, I’ve steadily endured the long haul. A few years ago, I was diagnosed with a cervical and thoracic lumbar strain. This is the result of the offset of my pelvis over the years. I’m sure there are other problems yet to be addressed. This has taken a toll on my spine and symptoms have limited my driving. I’m a candidate for total left hip arthroplasty, left knee replacement, and there is severe arthritis in the pelvic area, SI joint, left arm and leg. Treatment as per the cervical and thoracic lumbar strain is pending. Sometime after the surgery to remove the tumor; I started to come to terms with my back issues, increase of pain, loss of circulation and numbness in the right leg (the “good” side). I was told by my initial Orthopedists; when you have surgery; it can exacerbate an arthritic flare up; especially considering the extent of degenerative arthritis in just my pelvis alone. Although my life is somewhat hectic; I try to stay informed about the new treatments available to patients with back problems and pain. Timing is always a factor, and we’ve recently picked up more wrk through our business, because my medical bills run in the thousands yearly. This seems to always take precedent over my medical problems. Considering where I was and what I was facing, prior to pain management; thankfully, the treatment has allowed me to be functional and accomplish everyday tasks. Pain management has allowed me to be a “help” to my family, instead of a burden. I realize this can change at any time because of social and political reasons, and the opposing opinions on either side of the specialty that is, “pain management.” So vital to my quality of life; I try not to take my treatment for granted. I often worry about the impact on; not only myself, but my family and other patients, if we were to lose our care. I do realize I am a challenge, as I’m sure many of us are, and fear one day, we will “get lost in the shuffle.” Meeting patients from all walks of life through the years; I’m sure I speak for not only myself, but all of us, when I say this.

     
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