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So an update on what I would say to my doctors about my pain. I was just diagnosed likely with Ankylosing Spondylitis. My doctor looked at my scans and was like no wonder you have been in a lot of pain. (ummm yeah). My surgeon did not feel I needed surgery on my neck. My disks are bulging in my neck and there is obvious inflammation in my C3-C2 areas but if we can get the inflammation under control it will likely help and there is nothing touching my spinal cord as of now. So that is darn good. I do worry that there is a problem there, even though he didn’t think so, but I will just have to wait and see.
As far as the Ankylosing Spondylitis, I am not HLA-B27 positive. Because of this insurance does not want to cover my medications. I would like my doctor to fight for my formulary override. I am in a LOT of pain. His complain was that it is a lot of paperwork and to have to through it again in January is a pain. I was upset, because that is really 3 months out of my life—the holiday months–October, November, December. I would LIKE to feel better during those months and NOT wait until January to fight for them. I hate someone abdicating their duties because of work.
I get tired of insurance driven medicine instead of provider driven medicine. It’s sad that so much rampant over-prescribing and over/under treating has led to the insurance companies drawing lines in the sand. But for patients who have something lik eAnkylosing—they are truly messing with our entire lives, and I just feel like they feel those lives are dispoable. But they are not. Keep fighting no matter what. Don’t give up, if that doesn’t work, go to the supervisor. Get support, talk to a behavioral health person, hopefully that person will be on your side. It’s no easy at all.
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I would like them to:
1) take my increased pain report seriously. When I state it’s getting worse it—is—getting worse. Just because I am not acting any differently does not mean I am not physically any worse
2) I need them to look for the cause and not assume I need meds for my pain. I have gone months with increased pain levels and i had a CT scsn for a different procedure and they find out Heyyy. My thoracic lumbar snd heck my whole spine is a mess. I looked at the scan and there is obvious cervical stenosis at the site of my fusion. My neck is just getting worse and worse. This stresses me. To no end. I listen to my body it screams something is wrong—thank goodness I had a CT because they were just going to do radio frequency ablation on my nerve or cryo. Kill the darn nerves screaming something is wrong. They never really thought the degeneration could be that fast after a great MRI not so long ago. But my body told me something was wrong. No matter what I said there was no—further studies. Status quo. No more diagnostic. We are not all the same. But it’s really a mess. I can tell that just by the scans. If they say not I will have to get a 2nd opinion. And I know I’d be right.
3) think outside the box. When pain patients tell you meds do not work—perhaps genetic testing is a good idea. It was determined that I do not process many medications the way others do. Instead of thinking a patient who tells you meds don’t work for very long has just built up a tolerance–perhaps they cannot metabolize them correctly!! When a patient offers hair follicle, UA’s at any time and gets your concern because they were a substance abuse counselor for 10 years. I flipping hate this and wish they’d just hear me.
Just enough.
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I have degenerative disk disease, RA ( Reumatoid Arthritus/autoimmune of some sort) and ACDF of C7-C4,problems al over my spine at this point. And Lord knows what else now. Shopping is always either treat or big burden. I don’t go out much so I kind of cherish shopping more than anything. Biggest problem I have is getting bigger items out of the cart from the bottom or cart into my car. A fold down front would be awesome do I could slide items directly into my SUV from the cart would be awesome. Lifting several heavy bags hurts like hell. So this would be great. Maybe some kind of push system that doesn’t require me to contort my spine which already looks crooked and as if shark teeth are growing connected into my lungs. Mostly stores don’t want you to lift the heavy items any more, at least more than you have to. For me the cart is my “walker” and stabilizer if I have problems walking during shopping. The grabber is a great tool and would be super awesome. I think a really neat thing would be secure atep. Fold down step. Plastic light weight on side of cart. 18″ width with safety rail incorporated. The worst is trying to reach things higher and lower. I can’t always have someone tall with me. But a safe step that allows me to reach an item at 6′ is awesome. I am 5’3″. With my messed up neck and back I get tired of waiting for a store employee, good Samaritan for items clunky for a grabber. Just daydreaming here.
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