Today I woke up to find a post on Facebook by RA Warrior, Invisible Illness Awareness Video which is an interview of Kelly Young by Lisa Copen, founder of Invisible Illness Awareness Week. It made me think about how even when the illness progresses to show the visible damage it is still misunderstood. I remember some of the struggles of the disease as my mother lived with it. Struggling myself to help her while I dealt with fatigue that doctors could not figure out and to keep up with two toddlers. At one point my mother-in-law at the time suggested that my mother needed to drink some gelatin mixed with water each day to help protect and rebuild her joints, so I suggested it to her. Of course I remember her throwing her hands up with her fingers fused like stairways going up and the look of “really”. Sometimes it is hard when I am in pain and remember her disappointments.
I know that was not the beginning of her disappointments, I also remember times she was upset that the drugs were not working. Her complaints to my grandmother about how the methotrexate did not work and the gold shots were not working either. Then my grandmother telling her she needed to keep taking her medicine and her complaining back that the doctor said it would be working by now before she struggled to get up and walk out of the room. She did not really complain often around me but I remember the few times she did.
There also was a time she was told she had to use a ball that she could squeeze to exercise her hands daily, she refused to do that complaining it was just making her pain in her hands worse. I can understand that now when every time I try to write on paper and I can only get so far before hands are on fire. But I still think there is a time to exercise and a time to rest, sometimes it is hard dealing with doing both.
It is hard to take the advice of others and even harder when it is someone that cannot understand because they do not have to deal with the disease physically or mentally themselves. I am struggling with how to keep my posts positive when I feel the lack of complaining could be just one of the reasons why there has not been much financial support for research to help find a cure for this disease. But I can say I am very grateful for Kelly Young and other RA Patients that have started Rheumatoid Patient Foundation to help support patients dealing with the disease and hopefully some day we will be able to find a cure.
At times the disease can be funny though. This morning our water is shut off while the water company is working on the water lines. I just went to the bathroom and forgot when I flushed the toilet. Then walked out and laughed that I forgot and went to the kitchen and put soap on my hands to wash them, duh.
To end here is some more music therapy for you.
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. Continue reading
This week I am lucky enough to get to get up really early to be at the Cedars-Sinai Imaging Center by 9:30 A.M. Tuesday and Wednesday for a Nuclear Thyroid Uptake and Scan to see what the thyroid nodule is doing. Also I have an order for X-ray of Cervical Spine, to take a look at the Flexion/Extension and check for Atlantoaxial Subluxation. A previous scan shows mild bony degenerative and spondylotic changes throughout my cervical spine. Lloyd says I cannot complain because doing the test will help us see what needs to be done to improve my health.
After a little search with the thing they call Google, I ran into this article “Rheumatoid Arthritis of the Cervical Spine Overview of Rheumatoid Spondylitis” and reading how different types of compression in that area cause death for 25-30% of patients and in outcomes that “10% of patients with rheumatoid arthritis may die from brainstem compression that is unrecognized before their sudden death” I will go with Lloyd’s suggestion that I am lucky and that we may be able to prevent or take care of issues early. But whenever I quote percentages on information I find online, Lloyd see it a different way. He says that 70-75% of patients do not get different types of compression or 90% of patients with rheumatoid arthritis do not die from brain stem compression.
But I look at this a little different, first it is just one website with information that I have searched about. What is the age of the data they are referencing? Who collected that data? How was the data collected? Above I just quoted the website but I have not verified the data. Most patients or bloggers do not dig that far into statistics on the data they are referencing. The only thing in the above quotes that concerned me was the word unrecognized. As a patient with Rheumatoid Arthritis I see many things that go unrecognized. This quote had the following reference “Mikulowski P, Wollheim FA, Rotmil P. Sudden death in rheumatoid arthritis with atlanto-axial dislocation. Acta Med Scand. Dec 1975;198(6):445-51. [Medline]“. My first thought is do 10% of Rheumatoid Arthritis patients still die from “unrecognized” brain stem compression like they were in 1975? Have doctors found symptoms to look for to help prevent this from happening in the last 37 years? Has treatment of Rheumatoid Arthritis improved so much that this is no longer an issue? To me there is always more to be researched and patients are lucky to have that thing called “Google” to use.
During a weekly online Rheumatoid Arthritis patient (online support group) through TweetChat which is on Sundays via TweetChat – #rheum at 12:00 P.M. PST this week Anetto mentioned this article Dr. Google is currently only medical student Google. This article discusses the use of Google by patients, how sometimes doctors disregard something a patient finds online and how patients disregard the recommendations of going to the ER to take care of the stroke or appendicitis they are going through. Why does reading go to the ER not as effective as hearing a doctor say go to the ER? It also discusses how the data aka listings on Google which are getting more reliable. I can agree that as search engines have evolved one of their goals has been to provide the users better data, trusted data. This has been happening for many years. When search engines first started ranking websites it was pretty easy to get that number one spot, in fact it was pretty easy to get the top 100 spots if a person wanted to which made the listings in search engines less reliable. Continue reading
Where’s my socks?
A strange title but I have really missing my socks, around a dozen pairs disappeared. The last two weeks when I did laundry I only had a few pair of socks and I knew I had just bought some so I should have more than 3-4 pair. When I go to bed they are on my feet, when I get up they are gone. This week I was looking for my sweater and found a big ball of socks in the chair next to where I was sleeping. I have been pulling them off in the middle of the night and forgot about them in the morning. Finally I have socks again! I had to giggle when I found them, I forget things but this time I forgot my socks.
Is Cimzia working?
I finished the loading doses and this month was my first full month between shots. Last week I felt great all week, the change of taking 2 muscle relaxers (Flexeril) made a difference. Last Thursday night we were out for Business n Beer and Lloyd’s birthday. I sat on a bar stool for about 5 hours, I could feel soreness across my back by the end of the night. It was tighter the next morning and I felt it throughout the week. I will try harder to remember to sit with my back to the wall for some support the next time! Some lessons are forgotten, I usually make sure I’m sitting in a chair with a back to it, especially if it is going to be for a couple hours.
Before Thursday night the week was pretty good and I had some pain free days. Now I am looking forward to the next 2 shots of Cimzia on Saturday, I have felt some soreness in my jaws, hips, shoulders (when washing my hair or juicing), feet and fingers the last couple days as well as fatigue. The pain just feel like I am bruised and it comes and goes. I remember the same feeling as the Enbrel started working so that gives me some hope that I may find myself in remission again soon.
Even though the stiffness and pain has been better, I have still had to deal with feeling anxiety, feeling frustration and fevers. Next week I see a gland doctor (Endocrinologist), hopefully that will be the start to taking care of the Thyroid issues.
Rheumatoid Arthritis Support
If you are a patient with Rheumatoid Arthritis (aka Rheumatoid Autoimmune Disease) or a lovegiver (aka caregiver) please take some time to visit Rheumatoid Patient Foundation the first organization for RA patients by RA patients. If you are an RA patient, please take the time to answer our survey. You can also sign up as a member and have access to the private patient forum for $25 a year. Running short on cash; then here is your chance to become a member for free. How? Just leave a comment on this post by July 31, 2012 and on August 1st I will put the names in a hat and draw one person and give them a membership. In the comment please answer this question; what other diseases have you been diagnosed with besides Rheumatoid Arthritis?
Also you can join us on Sundays via TweetChat – #rheum at 12:00 P.M. PST. We feel your pain and frustrations, please join us even if it is just to vent, we understand.
Calling all Rheumatoid Arthritis patients and their lovegivers, friends and family. Would you be willing to help bring awareness about Rheumatoid Arthritis and the Rheumatoid Patient Foundation? We (patients, family, and caregivers aka lovegivers) can make a difference. I believe patients, family and caregivers are key to improving living with RA and finding a cure for this autoimmune disease (watch Lorenzo’s Oil and Burzynski both available on instant play through Netflix).
How can you help? There are many ways you can help bring awareness to Rheumatoid Patient Foundation.
Here are a few ideas on how you can help: