Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
And untreated. I've been seeing my current hairdresser for about 2 years. When I first met her she told me the story of her RA starting shortly after having twins 11 years ago-she's now 52. (At the time I had no idea I had or would get RA). She showed me her badly deformed feet and basically said she took nothing but pain pills. When she was first dx she proceeded to skate and basically enjoy life for the next 2 years with no medication. She eventually tried a few meds (she was really vague) but not many and found that pain pills were good enough.
Fast forward May 2011 and I get RA-have ankle surgery-laid on my back,etc. I suddenly realized "the beast" she was dealing with. She visited my house with her twin boys and her 14 year old son around that time. The 14 year old made a comment like; "Why did you let them cut you? You didn't need that surgery for what you have?" I'm like "ha?" He looked at me with the straightest face and repeated what he said. I was speechless so I figured his mom was down playing her entire RA ordeal.
Fast forward to today 2012, I went to her home as I did pre-RA to get my hair done. Her now 15 year old greeted me and appeared happy to see me. I could see my hairdresser laying in her bed from where I was standing. She took a minute to come to the living room. I noticed it was kind of solemn around the house and the boys weren't as cheerful as I remember. She finally made it to the living room wearing no shoes and walking slowly. Her son said Mom put your shoes on that's not good. You need tennis shoes like hers. I felt bad but then again his comment didn't seem to bother her. However it bothered the heck out of me because I'm thinking "you're children are starting to worry about you".
In my eyes she's a living example of untreated RA. The arches of her feet are deformed and the bottom of her legs are really swollen with old and new sores. The RA is obviously attacking from everywhere..and she has this bad cough too. I'm not insulting her condition at all because it scares me to death. And it makes me kind of angry because after I learned of my RA I told her that she needed to stop the progression of the disease. And she basically replied "they use us as guinea pigs. You just keep taking different medications and you'll see".
The moral of my story is NEVER ignore this disease. You can't honestly say you're fighting if you're not willing to accept the drugs and or lifestyle change.
I forgot to mention she kept dropping the comb and almost cut my face with the scissors. This was some visit to my hairdresser tonight. She won't be capable of doing my hair too much longer.
Fast forward May 2011 and I get RA-have ankle surgery-laid on my back,etc. I suddenly realized "the beast" she was dealing with. She visited my house with her twin boys and her 14 year old son around that time. The 14 year old made a comment like; "Why did you let them cut you? You didn't need that surgery for what you have?" I'm like "ha?" He looked at me with the straightest face and repeated what he said. I was speechless so I figured his mom was down playing her entire RA ordeal.
Fast forward to today 2012, I went to her home as I did pre-RA to get my hair done. Her now 15 year old greeted me and appeared happy to see me. I could see my hairdresser laying in her bed from where I was standing. She took a minute to come to the living room. I noticed it was kind of solemn around the house and the boys weren't as cheerful as I remember. She finally made it to the living room wearing no shoes and walking slowly. Her son said Mom put your shoes on that's not good. You need tennis shoes like hers. I felt bad but then again his comment didn't seem to bother her. However it bothered the heck out of me because I'm thinking "you're children are starting to worry about you".
In my eyes she's a living example of untreated RA. The arches of her feet are deformed and the bottom of her legs are really swollen with old and new sores. The RA is obviously attacking from everywhere..and she has this bad cough too. I'm not insulting her condition at all because it scares me to death. And it makes me kind of angry because after I learned of my RA I told her that she needed to stop the progression of the disease. And she basically replied "they use us as guinea pigs. You just keep taking different medications and you'll see".
The moral of my story is NEVER ignore this disease. You can't honestly say you're fighting if you're not willing to accept the drugs and or lifestyle change.
I forgot to mention she kept dropping the comb and almost cut my face with the scissors. This was some visit to my hairdresser tonight. She won't be capable of doing my hair too much longer.
I hope that your hairdresser will try to get treatment and I pray that she and her kids can stop suffering.
PS - I am also without health insurance and as your hairdresser can probably attest without health insurance many of us don't have the resources to chase down biologics and other high $$ treatments. So she may be "stuck" without the means to afford health care for her disease. It's sometimes easier to blame the doctors than to address the real issue...no $$$. I will put your hairdresser in my prayers.
Everyone does have to make their own choice. That's one of the wonderful things of living in a First World Country. We get to have the drugs - we can choose not to take them. So, to take or not take will remain both a choice of "if" and when" (remember, if it gets too bad, most will get the relief they need) The sad part is that RA is in third world countries too. No medical choice happening there. :(
I hope your hairdresser's kids see that someone who takes the drugs benefits greatly from medicine. (you) I also hope her hands don't become affected. She may have some really bad family or friend experiences with drugs and just can't bring herself to take them.
Bcatz-I'm really worried about it attacking her insides because she has a horrid cough. I really do care for this lady that's why I wanted to bring it here. Only RA'ers understand Ra.
BTW, in no way am I completely healthy. After my dx May of last year I was laid flat on my back. I couldn't dress myself and had to move in with my parents for a while. RA hit me very aggressive and it took a couple of med combos to get it somewhat under control. Remicade and Arava seems to be my winning mixture for now but who's to say it will be in the future. So please don't think I have this " I'm healthier than you" attitude. We're all just trying to stay afloat.
I too just took pain meds (and supplements, teas, etc) for 10 years until it got to the point that I could hardly walk. Then I found out that my right knee had eroded to pretty much nothing and needed a replacement.
I wish, wish, wish that I had started SOMETHING sooner to slow down the damage.