My favorite blog is RA Warrior. Kelly Young is an amazing woman and has the courage through all of the tiredness that one has with not only having RA but a mother and wife to have a terrific blog that supports many, many people lost out there with RA. She is an angel.

She asked a question today about how did your RA start for you? RA for the Rheumatologists follows that RA is mostly about the hands and wrists. But, is it really? There is no research out there for potentially other ways of looking at how RA starts and possibly helping the General Practitioner or DO to set RA patients in the right direction (instead of floundering around for years). Here is what I wrote in my little answer block provided...


"I think it started at my feet, but its hard to say. I remember getting cramps in my toes and having them curl up. When I had my first kiddo, I had to have cortosone shots in my right wrist from overuse. Then my shoulder started hurting, my hip would lock up if I was reading on the couch and tried to stand up. I would be walking around like a limping cowboy! Then I needed shots in my heel and ankle (no one ever said arthritis, but the x-rays would say "arthritic changes.") Then cortosone shots in my shoulder.

I had my second baby and while I was preggers I would hide my hand under the pillow where it was warmest to ease the pain. And at the end of that pregnancy my pubis symphis would click (the joint in the center of the hips). When I had him I couldn't lean against the counter without horrible pain. Then at the end of my schooling two years later TMJ appeared with a vengenece, my jaw would get stiff and I would (still do) have to open it to crack it and make it feel better. My wrists started getting stiff and cracking. My knuckles would too. My knees, my ankles followed. My DO sent me to a nice but spacy rheumy who just didn't help at ALL. Frustration, then went on with my busy life!

My neck a year and a half ago would crack as I turned it and realized couldn't turn it all the way to the right anymore. I had a bad bought of asthma and got lots and lots of steroids and mentioned to my pulmonologist how much better my joints felt (I just noticed, did not realize how much they hurt!). He said that a lot of people feel that way after a lot of steriods, so I brushed it off.

Then last December every joint went to town. I thought I was crazy! My wrists hurt! My knuckles were red. I couldn't type for more than a few minutes. I couldn't put my elbows on the arm rests. I couldn't sit for more than a few minutes. I was a pain in the butt and my family thought I was nuts! My very caring DO sent me to a rheumy and he finally after more cortosone shots in the hand and a thorough check up he diagnosed me (seronegative). Vidication! (And not quite a year later after diagnosis) Whew!"

And the question is where does it start? Is it somewhere else? Because RA does not just affect the joints, it also affects the lungs, heart, eyes, cardiovascular system. I wonder if it also is a part of my GI, because I always had issues there? Or just having a kicked up immune system - see my asthma. RA is about an INCREASED immune system. An AutoImmune Disease that is not like HIV/AIDS which is about no/low immunity. Its about the body attacking itself, out of control body! Where and when does it start? Is it genetic? Is it spurned by a viral or bacterial infection? A surgery or injury to bone? So many questions.

In the end, we cannot be afraid to live our lives. We as people with any condition cannot be afraid to let go and try our best to do what we can with what we have. No matter what the ticking time bomb is. Fear is not an option. That is why I support RA Warriors around me. xxxooo

Remicade on different schedule.

Had another Remicade infusion 2 weeks sooner than originally scheduled. My Rheum said my test were "normal" although he has said that and things were elevated. Hmmm. Anyway, after night shift I went to the infusion center and got my Remicade. I was so tired that I could barely sleep when I got home at noon (a 8 am to noon infusion). I slept until 5pm. Not enough. Then worked Friday night. Its getting colder around here and my hands are swollen and hurt.Time to take some pain meds and get ready for work. Positive attitude! Positive attitude.

Weather is changing; it affects the joints!

As the weather has changed, and it gets colder or rainier, my joints have been more painful and stiffer. I was hoping that the Remicade would be kicking in. I have two weeks to wait until the next infusion. I had to start up the 5 mg of prednisone because my wrists felt like they were broken one night. Now, many of my joints despite the meds are hurting, my knuckles, my wrists, my shoulders, knees, ankles, toes. Yikes! Placed a call to my Dr's office and told the MA. Had to go in and have labs. Kinda pissed me off. Like I would be faking it? But that's OK. If my sed rate is high it only underlines the situation. But its a factor in RA. Just getting to the diagnosis of RA is an uphill battle. And the having to prove you're hurting. Not fun. I begin to doubt myself even! Well I hope that things are figured out tomorrow.

The wind has been very driven tonight! Saw some transformers blow over the ridge in town. The power went out in the grocery store as I was just finishing my transaction. Whew! I was about to get a lottery scratch ticket from the machine. Good thing I didn't! I would have lost a dollar to the windstorm!

Got my infusion EOB today. Ugly. Now I will turn it in to the Remistart program people for assistance. Thank God! they are able to help. I would be facing the bankruptcy path. Seriously. I'm a bit unhappy that its not working as well as I had hoped. We shall see. There are other biologics out there.