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
It has been awhile since I updated so here we go. I switched from Arava to Methotrexate four weeks ago and I’m starting to feel much better now. I am not 100% but 80% is good! Looking forward to being able to carry my camera around and take some good photos :). Still taking Enbrel and B12 shots weekly. Currently enjoying not feeling like I was ran over by a truck.
The new year came and went by so fast! Since I was not feeling well, I did not get to do a post on my resolutions for this year. First, I decided I will go back to a notebook in my purse for my health log. Instead of trying to post what I’m dealing with or how I’m feeling in this blog daily, I will try to do a weekly post in my health log.
Secondly, I decided to start writing more about Rheumatoid Arthritis (RA). It was my intentions last year to have articles on this blog and not just a health log. Unfortunately, I was sick several months during last year, at both the beginning and the end of the year. Winters have always sucked for me. After I start feeling better, I end up spending most of my time catching up on everything that I need to do for my business, kids and home. I am still trying to catch up my photo blog, Geek Good Girl. Last year I started the Project 365 and because of not feeling well the last few months I have not finished the year. I have about 45 more photos to go, so I will be catching that up. I am hoping to start covering more marketing conferences on Geek Good Girl and of course post more photos. I am not going to continue Project 365, that way I will not have to worry about catching it up. Instead, I will post when I feel good or when I cover a conference.
Lastly, I hope to start or become involved in a non profit for Rheumatoid Arthritis. I have a few ideas and a friend with a PhD that can help with grant proposals; he does that for cancer research. I am also hoping some friends with RA and those without RA would be interesting in being involved with this non profit and ideas. So if you are reading this post, feel free to contact me. Social site links are in the sidebar —–>.
Since I have a thing for photos, I thought I would include a few in this post. My boyfriend has taken many photos of me in the last year. In previous years, I have not let him post photos of me when I was wiped out from the RA. Last year I got over it and let him post them as well. It is a part of my life. Funny, at the end of the year someone mentioned they can see in the photos when I am not feeling well. I always can see that in the photos, but my boyfriend does not really notice. Just like I don’t notice when he has gained weight. He always ask why I didn’t tell him he was that fat, I guess it just not what I’m looking at :).
This photo was while I was feeling good, on a flight to Ireland, with my boyfriend. I can say I had a blast in Ireland. I have not walked that much since before I had RA. I was shocked at how much walking I was able to do without pain. (Day 255 of Project 365).