Last week I had a bad flare, one that made it at times hard to sit and hard to hold my arm up to the keyboard and mouse. We had 4 or 5 days of rainy weather, I lost track. Friday through Sunday was my worst days; I am not sure why cold or rain aggravates my Rheumatoid Disease (previously known as Rheumatoid Arthritis) but it always has. It was pretty frustrating because I had work I wanted to get done and the rug was pretty much pulled from out under my feet with the “flare”. Rheumatoid Disease is not something I can control; even medication does not make me “flare” free, even during a “remission” period.
During the flare the pain was so high I started to experience anxiety which was high during that weekend and took over a week more before it was completely gone. Even more frustrating was today when I realized I had Flexeril muscle relaxers that would have probably reduced the amount of pain I was in but I did not even think about them. To try to explain how bad the anxiety from the pain is, I started watching just the food network. How can that cause additional anxiety? Well the cook was making some chips and some were from sweet potatoes, but they were white. I had never seen white sweet potatoes so I was feeling upset that she was smiling and cutting up these sweet potatoes that did not look like sweet potatoes to me. Also Lloyd mentioned to me that he picked up a TENS unit for me to help reduce pain and I was upset that he was getting me something that would electrocute me. I really wish I would have thought of the Flexeril hidden in a drawer but the pain went up so quickly and I was too exhausted to think about them.
I live with a disease we are now calling Rheumatoid Disease and currently most patients and doctors call it “Rheumatoid Arthritis”. It is an inflammation disease but it does not just attack the joints. I do not believe that it strictly stays in the joints like many other patients, we do not need professionals to make us feel any “crazier” then we already feel with this disease. The disease for me has come with many other labels. When my lymph nodes started swelling I was given the additional label of Lymphadenopathy, when I am not happy with the disease I have depression, when I am in so much pain that my head can no longer take it then I have anxiety, I am still waiting on the new label for the nodules in my thyroid that seem to get inflammation during flares. I am not certain what label that is included in my medical records for the disc that has slid into my spine in my neck or for the one that has started to thin, I will find that out when I get copies of them.
I do not mean to be all doom and gloom in this blog, but it is a “personal” blog and I do use it to vent. While I love the grace of RAwarrior, the hope of RA Guy and the sarcasm of Hurt Blogger, I am more of a “this shit has got to change” type of blogger. Maybe that means my muse is a bit bitchy, maybe this disease just brings it out in me. I do not think anyone that met me in person would describe me that way though, maybe I am wrong.
I have watched my mother suffer and die from this disease, I have two sisters with this disease and I do not want to see my children go through this disease. This makes me extremely grateful for Rheumatoid Patient Foundation and all the patients that are trying to bring awareness about this disease and to help create changes so patents get better treatment for this disease.
This past week I visited the doctor towards the end of a bad “flare”. That same day I was due for my monthly Cimzia shot and Lloyd suggested I wait until after the blood tests, just to see how it looked in the lab test. I was called this week with the results and was told they were all in normal range. This did not surprise me, I have gone to the lab when I could visibly see the swelling and still my labs came out perfect. So at the doctor’s office we discussed some drug options to add to the cocktail I am currently taking. We discussed drugs we could add with the Cimzia to help reduce the flaring of the disease and we are adding 10 mg of Arava which I had success with on Enbrel, but at that time I was on 20 mg and had weight loss and stomach issues with so we are trying half of the dose. Also we added a NSAID called Meloxicam to use for 3 months while the Arava builds up in my system. With RA you do not just get a drug and you are good to go, it takes many months to years to find a good “cocktail” of drugs to hopefully be functional. I also have a few Xanax to use if needed during the next flare, but as I mentioned earlier the pain levels went up so quickly that I did not remember Flexeril. But I do recognize the feeling of “anxiety” and do not wish to feel that and think I would remember I have something specifically for that during the next “flare”, I hope.
I do feel pretty good today, enjoying the open doors and the warm weather. Today is also the first ever Rheumatoid Awareness Day for patients with Rheumatoid Disease previously known as Rheumatoid Arthritis created by Rheumatoid Patient Foundation. February 2nd, 2013 is also Groundhog Day and Rheumatoid Patient Foundation chose the same day to help bring the disease out of the shadows. Rheumatoid Patient Foundation is asking everyone to consider a gift as simple as $6 — reflecting the 6-week time period the Groundhog’s Shadow predicts & the short window of opportunity for early diagnosis & treatment. Through February 5, 2013 your gift will be doubled by Crescendo Bioscience up to $10,000! For that reason I started my birthday wish early this year in hopes of having your gift doubled. Causes.com has a minimum of $10 for donations. You can make a donation through my birthday wish here: http://wishes.causes.com/wishes/498007, I set my goal at $2,500 this year. If you would like to donate the $6 then please donate through: http://bit.ly/give2RPF, either way Crescendo Bioscience will match up to $10,000.
The photo above is of me with a groundhog on my lap and my daughter next to me. We were at a neighbor’s house and she was caring for a blind groundhog. This groundhog kept following me around, I sat down and it crawled up into my lap. My son took the photo. I am thankful for the first Rheumatoid Awareness Day and hope this will bring this disease out of the shadows so we can get better treatments and someday a cure, we do not want our children to go through what we are experiencing now.
Okay you had to know I would go there at some point. Getting on more drugs made this song pop into my head, another one to add to your music therapy list. Enjoy!