I'm a newbie, I've been on this Rheumatoid Arthritis journey for a year, and my best friend has been battling lupus for 20 years, but I did not know what RA was until my diagnosis. I'm not sure what is better: to not have known what I knew or to have been completely oblivious. I have known about all the meds and the names of them throughout her battle, so when I was initially put on plaquenil by my GP (PCP), then prednisone by an emergency room Rheumatologist that was on call, the horror was beginning to hit me. Hah! like it wasn't enough that I couldn't get out of bed and when I was able to sit up, standing and walking to the bathroom brought me to sobs of pain. When I met my rheumatologist and her nurse on my second visit and was told what my course of treatment would be: first, to get off the prednisone (YAY!) using Simponi (she gave me 3 sample injections - value $5,000 - this helped me get off the pred and bridge me the 12 weeks until the other new meds kicked in), double the plaquenil, gradually start Sulfasalazine and build it up and then the clincher ..... Methotrexate injections. I had to learn that very day how do inject myself. I was shaking when the nurse handed me the syringe and the vial of saline ... but I did it!
I knew methotrexate was probably going to be in the mix (because my best friend has been on it for a very long time and I knew that on her "chemo" days she was not to be contacted, she was down for the day) and had been surfing the net finding out what I could about possible treatments and one night - I cried myself to sleep after I had found a site that scared the living daylights out of me about methotrexate. Shortly thereafter, possibly even the next day, I found www.rawarrior.com! The information on methotrexate was more practical and "real life" than anything else I had found. I felt less anxious instantly .... I searched around the site some more and realized that this was going to be my life ..... probably ever changing and learning, not about the "standard" stuff, but about a chronic disease that would "change" me in more ways than I could imagine. Unless you get a life altering diagnosis, you will never know the fear that runs through every cell of your being. Finding the patient support sites, pages online and on Facebook, gave me this reassurance in the back of my consciousness, that I had "somewhere" to go, to go to when I couldn't sleep in the middle of the night and when I was and am housebound, to go when I was worried, to go when I had questions, to go when I was scared sh!*less. I felt so terrified and alone - I wasn't ....
Kelly Young (Rheumatoid Arthritis Warrior) is a force to be reckoned with and I still don't know how she does it .... She is a wife, mother, patient, friend, patient advocate, writer and fighter. She has inspired me, made me braver and confident about putting myself out there and educating whoever will listen. When she went to the advisory committee in Washington for the new biologic, I (lil ol' me) was the one educating my team about her and why she was there. My Rheumatologist did not know this drug was on track .... and my rheumy is a smart cookie! Kelly travels at a very high cost to her own health to conferences and speaks whenever possible to the medical community to advocate on our behalf, to tell our story of RA.
Kelly unknowingly inspired me to say yes, when asked if I would participate in an ongoing data gathering study through my rheumy's office (18 pages every visit) and again when asked if I would participate in a one year Actemra study (I am one of 250 in my country and 2,500 globally). I know I will not directly benefit from these studies, but my hope is that down the road, someone will.
As a newly diagnosed person the information I received was vital. As a more experienced patient now, I still find valuable information there about what is going on in our corner of the "medical" community and the support from others with RA is unbeatable. If you haven't visited the RA Warrior website (sign up for the newsletter), or Rheumatoid Arthritis Warrior Facebook page ... go and discover that you are not alone ...
The Imaginary Friend
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