Sometimes there is so much I feel needs to be expressed about living with Rheumatoid Arthritis and making choices with this disease. My experiences with Rheumatoid Arthritis is long, since the 1980′s when my mother was dealing with it, seeing my sisters deal with it and reading other patient’s blogs, messages and social posts on how they are living with it. It is not at all easy; it is a very hard path to be on. The choices of drugs are hard, the choices of what you eat are hard, to stand or sit, can you do either? Will I be able to lay flat tonight or will I be able to sleep sitting up? Will tonight be a night where I cannot do either but are to weak not too sit and now have to deal with the pressure building in my head from my shoulders and neck being so weak. Going to doctors that claim the disease does not kill you or doctors that are confused on why you would have pain in that part of your body, there are no synovial lining there! Really?
My older sister still goes to the doctor I was seeing for the first 7 years of this disease and he is a lurker (doesn’t really post but follows social/blogs). She said he wondered if the doctor I was upset about was him, it wasn’t. I feel really lucky to have that curious doctor in my life. He gave me what I needed; a doctor that listens, discusses and gives you your options as well as tries to get a better understanding of what his patients go through. A doctor that does not follow just what the tests show or what is said in the text books. I know from many discussions with him that he has changed his practice over time as he learned how to treat his patients better. It is a rare doctor to find, it is the kind of doctor that patients have the right to fight to have. The ones that listen, discuss, are willing to learn and change. The ones that consider each patients needs and understand how different each patient’s needs may be.
At one point in my life it was my son that was so very sick. He was losing his hair and the doctor diagnosed him with Alopecia. As a mother I frantically researched as much as I could about Alopecia, but the symptoms did not fully match. Off to another doctor who claimed the same and gave me the look that I was crazy because the blood tests are fine. Then another doctor who just said the same thing. Then trying to get into another doctor who wanted to wait three months to see him and finding myself screaming on the phone that you can’t make him wait three months. My son is white as a ghost with strong dark circles around his eyes, he is barely awake during the day and when he is awake he is screaming that his stomach hurt or his legs have cramps. The receptionist says Alopecia causes hair loss, no big deal, he can wait three months. REALLY!! None of these symptoms are listed for Alopecia; none of these doctors are listening to all the symptoms. I must just be crazy right? Continue reading
I have been trying to deal with the pain of Rheumatoid Arthritis also known as Rheumatoid Autoimmune Disease or Rheumatoid Disease since I fell out of “remission”. RA is a hard disease with pain, fatigue, brain fog and many other symptoms. The pain can be very intense and some of the other symptoms can be very annoying. Some may handle it with grace (RAwarrior.com) but I am a little more clumsy. I am the one that trips, stumbles, slides down stairs and runs into things along the way. I have been on that RA roller coaster of drugs this past week and let me tell you it is not fun. It is hard to decide which drug to take. Is it working? What is next? When will I have to get joints replaced? Will my joints survive better then my mothers joints? What other damage is it doing? Lloyd says I am more in tune with my body than anyone he knows; I have to be. I cannot just ignore the pain, stiffness, mouth and throat dry, having to urinate, having my nose feel clogged/swollen. I wish it was that easy! I would love to do that. I try to do that all the time, it usually does not work out if I ignore it. Since my Rheumatoid Arthritis began I have found it very hard to follow along with conversations, if any pain starts or fatigue then I will miss parts of what people are saying. I learned to make list so I would not forget what I needed to do. Sometimes I forget I have a list.
The Flexeril I was taking was not working very well so the doctor gave me a prescription for Zanaflex. Usually when I get a new drug I do some research about it. This one had side effects that included vivid dreams, seeing things and some patients were having nightmares. One mentioned fighting spiders that were not really there. I told Lloyd these side effects, someone should know what could be causing someone to see things or what if I am fighting a big spider in the middle of the night, that might not help my shoulders much. The first night I took the Zanaflex I did have a vivid dream and it was a little strange. I felt like I was just waking up, trying hard to see the writing on the wall above the sliding glass door. It looked like chalk art on a bright white wall with some writing. I was trying really hard to get my eyes fully open to see that writing. Then another part of my brain kicked in, I realized I was dreaming. I remembered the wall was not a bright white wall, but the dream was still vivid as I felt like I laid my head back down as I realized I was dreaming.
I found the Zanaflex only helped me sleep around 4 hours, then I woke up with some pain but felt wide awake. Still it felt like the best 4 hours of sleep that I have had in a long time. The Flexeril just did not seem to do that for me. The 4 hours of sleep was not enough for me to be able to function throughout the day but it was nice to feel like I slept great; it has been a really long time since I slept “great”. Back to side effects. One day we were out having dinner and very small ants started crawling across my plate, I grabbed my napkin and pointed it out to Lloyd; he saw the ants. I wasn’t sure if I was just seeing things, my mother did get kicked out of a restaurant for seeing bugs and ended up in the hospital, so side effects of the drugs concern me.
Just when I think I have the dosage figured out and I am heading in the right direction I get knocked down again. Lloyd had pain in his lower leg, I could feel the tightened muscle, so I grabbed the high CBD coconut oil and started massaging his leg until I could feel it was looser. When I stood fully up again I could feel the stiffness in my lower back. Then the pain in my shoulders that had gone away after the Zanaflex came back and came back hard, my shoulders were on fire with pain. I could not sleep so I waited until the next dose hoping it would help. At some point Lloyd called the doctors office and a new prescription was called in. I do not think the Cimzia is helping enough, if it was, I would not need to be on the muscle relaxers.
The last couple days have been pretty good and pain free most of the time. Still having trouble laying down flat, my nose feels like it swells in the inside and my mouth and throat dry out. I am on Amrix ER and Flexeril and it seems to be working, just makes me sleep too much. I use medical marijuana to help get relaxed as well, I can’t focus that well after using MMJ but I usually cannot focus well by the time I use it anyhow. Not sure what is next. My lung function tests were good, the Thyroid function tests came out fine I guess, scheduled tests for January to check up on it again. Still having trouble breathing the last few evenings. 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
Today was my first appointment with the Endocrinologist (gland doctor). I talked to two doctors, one inspected my throat area and they looked at recent blood tests and previous ultrasound of my thyroid. They discussed the nodule as being vascular which has blood vessels in it and a biopsy could lead to bleeding. We discussed symptoms I have been having from feeling like my body is on fire to feeling extremely cold, weight loss at 10 lbs a week during “flares”. To trouble swallowing, choking when I drink or eat at times during flares. Trouble breathing usually during the evening hours.
They decided to start by ordering better imaging and seeing what the thyroid is doing from what I understood. They also ordered more blood tests which I did before we left. As we were pulling out of the parking lot I received a call from their office. The imaging appointment had been setup, it is a two day test and I must not eat any seafood for 7 days prior to the test.
Day one I will go in at 9:30 a.m. and take a pill around 10 then wait 4 hours and go in for the images. Then I will head home for the night probably around 4 p.m.. The next morning I go in at 9:30 for images again. Sounds fun right? I do this in about a week, then go back for results around mid August.
It seems pretty common to see other RA patients that have a long list of diseases and medications listed in their forum signature. Sometimes the symtoms of the multiple diseases commingle, making it hard to know what is causing the issues. Sometimes while talking to other RA patients we discover we have some of the same symptoms that we have not discussed or mentioned to anyone. That happened to me this past week on Twitter while discussing in direct messages some symptoms with another patient who is currently having thyroid test done as well. The symptom we discussed was the feeling of our tongues stiffening at times. We did not go into more details but I will explain how it happens with me.
At times I have felt like my body was on fire and during those times I usually lose weight quickly. But also during those times sometimes I get so cold that my body will not stop shaking (hard shivering) and it just seems to get worse until it feels like the back of my tongue is stiffening up or getting hard. I have found if I get myself under blankets I slowly start warming up and the coldness stops. Both being overheated and severely cold are very scary. These symptoms are usually happening during a hard flare, for me the last time was during a hard shoulder flare in January when I had trouble with the weight of my head causing increase pain (see Bad Week, Hard Lessons). But the feeling of being extremely cold happens less for me than the feeling of my body being on fire.
So here I will try to list the symptoms I have or have had since December of 2003. How many of these symptoms have you had? 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.