Many things become a pain in the neck when dealing with a chronic pain disease like Rheumatoid Arthritis. But I am not going to get into dealing with insurance, doctors, pharmacies or people that do not understand at the moment. I want to talk about the physical pain, stiffness and weakness in my neck. This is not supposed to be Rheumatoid Arthritis according many of the Rheumatologist and medical websites. I just cannot understand how a person’s shoulders and hips can weaken so much that the joint cannot take the weight and the spine is not an issue? How is that logical? Really I need to understand how it would be logical to a doctor that the spine of a Rheumatoid Arthritis patient is not affected and does not need to be monitored? If the joints are weak then what part of the body takes on the weight? The spine right? Not that I believe that RA does not attack the spine. I can feel it there just as much as I feel it in my joints, muscles, ear, throat, eyes and the rest of my body.
Lately I have had less pain, stiffness and weakness in my neck, but it still hits me when it rains or if I hold my purse too long. Just like when I stand too long on my feet. The amount of time I can stand without pain in my feet or holding my purse is longer than a few months ago, but I still have limits. I have noticed that when my neck is in pain or feels very weak, I do get dizzy spells. I always thought it was the drugs but recently noticed it happens when the neck is stressed, like after sitting without any back support. Just like the inside of my nose swelling up, the choking, breathing issues, pressure headaches all seem to hit when my neck is stiff or weak. I still find it funny that one night I was able to find a position for my head/neck that made the swelling in my nose and other symptoms cease. I usually struggle to find a position to relieve the pain, just never notice until that night that it relieved other symptoms as well.
My last visit to my doctor I was informed that my neck x-rays showed issues with C-2 and C-3, one disc is thinning and the other has slipped just a little into my spine and the curve of my neck is now opposite of what it should be. I guess damage from the last 2 years of flares in my shoulders; I do have imaging that shows my neck was fine in January of 2010. So I started looking for more information on neck issues with other Rheumatoid Arthritis patients and found this Basilar Invagination on RA Warrior. The doctor had told me at my last visit not to worry my neck is still fine and it is C-1 that is when you have issues because it can cause brain stem compression. Well my younger sister has complained about pain there so I was a little upset and did not ask any questions. But after reading the article and following through on the link to Cedars-Sinai on Basilar Invagination which is where I see my doctor, I decided to give her a call. From the little I understand Basilar Invagination it can happen when there are issues with C-2. Unfortunately when I called and questioned her about it, she chuckled and said the x-rays show I am fine. I tried to mention to her the symptoms seem to match some of the things I go through, especially when my neck feels weak but could not get much out because she is sure from the X-rays that I am fine. Any patients that are dealing with stiff neck, pain in the neck and what I can describe as extreme weakness in the neck, what are you doing for it? What tools do you use to help relieve some of the symptoms? I would appreciate any suggestions you have.
Last week I finally picked up a new, well used but new to me wheelchair. The local medical shop rents them out but deducts the rental fees from the retail price when they sale them. So I picked up a $260 wheelchair for $119 and it is in good shape. I enjoy going to events that Lloyd covers on GotBaddog.com but find it difficult to find seats that work for me, like ones with back support. During his coverage of the Wounded Warrior Project Benefit at Rocktoberfest the seating was picnic tables which no longer works for me. I tried sitting on the planter boxes around the edge of the event because they were wider, but still paid the price of not having back support which caused stiffness and pain for a couple nights. It is like when I found out about the Evil Bar Stools. It is hard dealing with a disease that gives you issues when you stand, walk, lie down and even sit, can you imagine how crazy that would make you?
So our next event Hollywood On Tap benefiting The Blank Theatre I was prepared with a seat that fully supported my back. Unfortunately it takes up too much trunk space, but I guess that is part of living with RA. I had a lot of fun working the check in booth. I did feel a little wiped out a few times but did not have increase pain in my feet or neck from going to the event. Now the weather was a different story, I did start the day with sore feet so having the wheelchair was perfect timing. I did walk around the event once and picked up a couple tasters as well as some recommended mac & cheese which was good. I also took some time to snap a few photos with my iPhone so I could do a little social marketing. I will say I felt funny being in a wheelchair but able to stand up and walk around. I am just waiting for somebody to scream it is a miracle she can walk.
It is funny how fears can be so different when you are dealing with a chronic pain disease. I remember in March of 2007 my hips had been flaring for a couple months and I was stuck in bed. Only getting out of bed to use the bathroom or soak in a tub to help relieve some of the pain. At the time I was also dealing with an increase menstrual cycle, so much so gushing was like old faithful, okay maybe not that strong but it felt like it and it was an extreme amount. I wonder if my hip flare was causing more problems than just in my hips.
Anyway, when the tub turned red as the water changed to blood, I prayed that it would just keep going but then a few seconds later lifted myself up and opened the drain. I turned the tap on and started cupping the water trying to wash the blood off my legs. Someone walked in and told me when I died they have it all and chuckled as they turned and walked out of the room. It is funny sometimes how a prayer for one thing shows you another as I found myself cleaning up and then on the phone with the doctor for a raise in steroids so I could walk out that door. Rheumatoid Arthritis can put a strain on a relationship, but some relationships were made to fail from the start.
I know others may be good with writing in a positive way about Rheumatoid Arthritis aka Rheumatoid Disease aka Rheumatoid Autoimmune Disease, maybe someday my writing will improve in that way but right now I can only write about my struggles with the disease. These struggles are not so easy and I am not sure how to convey them in such a positive way.
I do not have a fear of dying, it is funny to me when I hear people say they do not fear dying like somehow I do or should. I fear living in pain but guess what that is what I have been doing for the last 9 years and I am still here. My current fears would include patients continuing to have lack of good treatment because of the current healthcare system, my children having to deal with this disease and surgeries I may have to go through in the future. But I try to stay positive day to day and to enjoy my time with my boyfriend, being able to work out, taking walks when my feet are able and feeling the sun on my skin.
Rheumatoid Patient Foundation is sponsoring a contest to help spread awareness about Rheumatoid Arthritis. Find out more about how you can win a Pentax Camera on RA Warrior and for the entry rules. Please consider supporting Rheumatoid Patient Foundation with a financial donations, we need help spreading awareness about the disease, to be able to fight for better treatment for patients and hopefully someday find a cure.
Finally here is another song that has made it to my music therapy list: