As I read over the 7 ideas that the #TheRealRD asked for bloggers to blog about for RA Awareness Day, which is on February 2nd, and also happens to be Groundhog Day, and was my Dads Birthday, yet he passed away 10 years ago.
Ive come to know and understand the true chances of myself, and thousands of others out there like me, who suffer from this Autoimmune Illness, have MUCH pain, sometimes daily, and we KNOW all too often no amount of medications our Rheumatologists give us, the pain, the stiffness, the swelling, the lack of use of that particular part of your body like your hands and wrists become a severe problem. Take someone like myself that is a published author, and avid blogger, trying to set at the computer daily, for often hours at a time, if you intend on keeping a blog up to date, and writing a 3rd book, I must be at the computer.
Yet, daily pain keeps me from making my goals, that I had set even two years ago. So, when I saw this opportunity to write a blog post in honor of February 2nd, RA Awareness Day, by the Rheumatoid Patient Foundation (RFP), I am thrilled for the opportunity.
Honestly, and I am sure many of us could write about all seven of the topics. I have been through so many different medications and combinations, that either did not work, or caused severe other health problems, mainly all types of infections. I feel we do NOT have nearly enough research funds to get to the root of this hideous life altering disease. I also know so MANY others may not know that RA can effect all different types of organs in the body, from the heart, causing the heart attack number to DOUBLE for those with RA. It effects the joints, and usually many joints. Feet, toes, fingers, wrists, thumbs, the spine, the liver, lungs... It is a systemic disease, of which can harm any and/or various other vital organs of the body.
The daily pain is what many do not often understand though. Those who do not know the treatments, may not realize just because we are on medications, that does not mean, that all that often the pain subsides. I spoke with a member of my Rheumatologist staff two weeks ago, and when I explained to her the amount of pain I live with was high on the 1 to 10 score, she looked at me and said that is NOT Acceptable! No one should live most of their daily lives in that much pain!
After speaking with her it dawned on me that I DO accept an unacceptable amount of pain most days of my life. I have gotten to the place I think this is just how it is, I WILL have to just LEARN to ACCEPT that on a scale from 1 to 10, pain at an average of 4 will have to do, which is so WRONG! A level daily of 4 for most people not used to chronic pain would be excruciating! And it is not right for me to have to deal with ongoing pain of that magnitude day in and day out, yet what do I, or WE do about it?
I have a great Pain Management Doctor, who has implanted my pain pump, and will up the dosage as I need it, plus he gives me oral medication for breakthrough pain. Yet, I feel that is part of the problem. I have TOO MUCH breakthrough pain, on almost a daily basis.
MANY of US as Chronic Pain Patients, whether from RA, Lupus, other bone and joint problems, spine and back issues, severe nerve pain in different regions of the body, for many reasons, from diabetic nerve pain, to nerve pain and other types of chronic pain, that even our doctors do not know WHY it is there or sometimes even HOW to treat it properly - we are told that WE MUST LEARN TO COPE with a CERTAIN AMOUNT OF PAIN! It is not that I do not agree with that, I do. NO MEDICATION will take away ALL of the pain. YET, with the proper treatments, diagnosis, sometimes surgeries, some combination of medications, certain types of exercise, some diet changes, and some natural types of therapy pain can be diminished much better. IT IS FINDING that right combination of all of those or part of those things that can give us that type of relief, BUT it make take weeks, months, even years to get that all adjusted and working. There is NO ONE treatment, or magic pill, to just take and chronic pain subside for good.
All too often I feel that RA is a very misunderstood disease. Even though we have LOADS of information about medications, ads on the television, and in magazines, I feel that as a society those that are not patients, caretakers, or close to someone with this horrid disease do not fully understand what it can do. It as not as simple as taking an NSAID over the counter, or even taking one medication that is a prescription. At times, some of us DO fine the correct medication, or combination of medications and find relief. Yet, those that do, are far and few between.
I have been through an entire gamut of all types of medications for RA and Lupus. In fact, I just saw my NP from my Rheumatologists office 2 weeks ago. As we spoke about my pain, the daily swelling, stiffness, I am losing more of my grip in both hands, the weakness, losing the ability to do everyday things, buttoning a shirt, or even zipping a zipper... I have watched my body especially my hands, wrists, fingers, thumbs are very bad, feet, ankles and now my spine begin to degenerate even more than ever before due to RA. She made a remark that upset me when she said, that I had tried all kinds of medications and none of them seem to work. What upset me about it so much, it was like she was blaming ME for medications not working! Some of them caused too high of infections in me. I had double pneumonia at least twice, then had cellulitis in both thighs, that then turned into double abscesses, that took 4 or 5 MONTHS to get well. I had to make a weekly trip 35 miles ONE WAY for weeks and weeks to a Wound Care Specialist in order to HEAL those abscesses! It delayed me in having a cervical neck surgery I needed badly, as well as my internal pain pump had a permanent motor stall, and I needed surgery to replace it! But not one surgeon would touch me until those abscesses were basically well, and I was free of infection.
So I spent months without most of my RA medications, plus a couple of months without my pain pump working, and suffered endless weeks of having to have wounds the size of a silver dollar and as deep as half my thumb getting debrided until they finally got well. Our pain is NOT just as simple as from a joint. It is not as simple as taking one pill. There are so many medications, yet like myself, daily, I am in pain. Especially for the 1st few hours of the morning. As joints start to be effected MORE by this disease, then the pain can become almost unbearable, and at times, even in my lumbar spine, I have enough degeneration from this hideous illness, that it hurts so badly, I cannot even sit to type, to write, or often not be able to have the quality of life I so want to have.
Honestly, I cannot recall unless maybe a very rare occurrence that I have read or heard one person tell me, I am in remission, and I have finally no pain from Rheumatoid Arthritis. I do not believe the cases are out there, and if they are, very, very rarely do they happen.
When I saw the article about raising awareness on February 2nd by the Rheumatoid Patient Foundation, and that I could participate, and tell my feelings on 1 of 7 subjects, I wanted to tell my feelings, and story, because awareness is something we so desperately need so much more of.
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