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Fantastic post, Kelly… so much of it applies to the diabetes community as well
Dear Kelly,
You said it! Living in what I call, “my new reality”, is one of the most challenging parts of having Rheumatoid. The overwhelming sadness associated with this “new reality” can be almost as dehabilitating as the pain, the fatigue and the physical limitations.
Thank you for reminding us that we are supermen and superwomen.
OX
Beth
There seems to be the perception, that people who suffer wiith RA experience joint pain. I had images of crooked fingers and bent over old people. What isn’t told and I believe misunderstood by the public at large, is the symptoms vary. The sickness is felt many different ways and effects your whole persona. If there was a better definition of the effects of this desease, both the general public and the RA patient would be able to handle it better.
I still walk around in disbelief, not sure if I’m feeling lousy because of this desease. Sure my feet hurt and I’m wiped out, but is the RA or am I just tired? And yes there are remarkable people who fight through it, don’t complain and trudge on. I have to admit, i’m one of the weak ones. I complain, I pop a couple of Percocets from time to time, I use it as an excuse to not go to the party that my wife wants me to go to etc., etc. But there are times that you suck it up, fight through it and do what you have to do. The point is that no one is “Superman” all the time but on the flip side, sometimes we are!
Ed, thanks for your thoughtful comments.
I talk about the individual differences every day & during every talk I give. It is one of the most un-helpful things that both patients and doctors make the same mistake as the public and pain RA disease with a broad brush. Did you read the immune fingerprint post recently? http://www.rawarrior.com/the-immune-fingerprint-and-rheumatoid-disease/ There are good reasons we do not all exhibit the same symptoms day to day. One of the main purposes of this website has always been to develop a more accurate understanding of this disease – it’s mentioned on the About page in the sign over my desk.
That’s a great point, Ed. I’ve had RA for 41 years, and it has taken on many forms. I never know what to expect from it (although I do usually have joint pain). But some of the other symptoms have surprised me over the years. RA: Expect the unexpected!
Another problem that “pops up” at our MD visits, is that yesterday we had a lot of redness and swelling of one or several joints, but when we walk through the door to the office, our symptoms miraculously disappear. I’ve often told my rheum doc he must think I’m a hypochondriac – no symptoms when I come in, but I complain about all my joints and muscles yesterday or last week. Fortunately, my rheum doc believes his patients. He treats symptomatically as well as clinically from tests.
Last visit, I think I came up to the solution I needed – and, perhaps it will help others (of course, other people probably have discovered this, but I discovered it independently). Several days before my last appointment, My hands swelled up and I could hardly use them. I managed to activate my cell-phone camera, and took snaps of my hands until I was satisfied that they were adequate for the purpose. When my Rheum doc saw the snaps, he said, “Oh! That’s not right!” Then he proceeded to change my meds around – off mtx, on Arava, setting up infusion times for Remicade. Every time I have flaring now, I’m taking pics of the affected joints. Sometimes, because my skin is swollen and tight, it reflects light funny, so I cut off my flash and just use ambient light. Whatever works. Now, however, I have a wonderful documentation of my flares.
Hope this will help other folks.
absolutely! I’ve been taking photos for a couple yrs now & encouraging others to do the same. Great reminder to document anything changing. Some drs like them – mostly those same drs who already tend to believe patients – I’m glad yours believes you.
TurtleMom, great idea. for me that wouldn’t work though. I hardly ever have visible symptoms but pain is near-constant. Some deformity in my right hand but it’s hard to spot unless you are specifically looking for it.
BTW I know exactly what you mean about the Dr’s visits. I joke with my Rhuemy that I should make an appt every day. I seem to feel great on those days that I am going to see him…
Hi Kelly. Beautifully put…
Here’s where I am having a hard time reconciling it all. If I were talking to someone else, I’d tell them that it is what it is. You can only do what you can do and your best is all that cane be asked of anyone and your best is simply different with RA then it was before. No shame in changing your expectations… But when I talk about myself, it is somehow different. Against all reason and all logic, it is hard to accept that from myself. My wife points out the obvious flaw in my thinking. But I cannot seem to help it… I still want to be Superman. I still want to be the one that solves problems and makes things better and to a great extent, I think I still do/am… BUT I hate it when I fall short. It kills me for my kids to realize that I am after all just another flawed human… Denial? Ego? I am not sure…
When I was in Kindergarten and first grade, my parents had to carry me into my classroom each morning and place me in my desk. Usually within an hour or so, my joints has loosened up enough for me to walk (and the baby aspirin I had taken had worked some of its magic). My body certainly had limitations, but my brain didn’t! I loved school and despite RA had perfect attendance until I caught chicken pox in the third grade. I accept my physical limitations, because I don’t feel they limit my overall potential at all. If anything, they feed my creativity.
Thanks, Tina. Good input!
Oops! I meant to welcome you back, Kelly! I hope you recover fast from the trip and the activities. Knowing you, I’m sure you pushed yourself too hard and are now in the “too tired to sit still” mode. Wrap up in that duvet of yours, have one of the kids crank the AC to the right temp, and try to drift off for a while. Love you and wishing you all the good thoughts in the world!
Cheerio!
Elizabeth
Excellent post, Kelly. It is a daily struggle to keep guilt at bay, for all the things I can’t do anymore. I guess denial, stubborness, and pride are all my major reasons why. It breaks my heart to know I can’t be the wife, the mother, the employee, the friend I use to be. Thank you for the reminder that it is all part of the disease and not under our control.
I wish I had know you were in Houston I would have made arrangements to come see you!I love your website and your posts. You put into words what I can’t seem to. I have a problem accepting my limits. I have always been independent and I get very frustrated when I can’t do it myself. Thank you for what you do.
So empowering, Kelly! Just love how you write and have a way of getting to the core of everything! I find myself not having anything add to your posts, so I rarely (if ever) comment 😀 But the feeling I felt after reading this… I decided to respond, you made me feel like a Superman! 🙂
I have found that often you’re damned if you do, damned if you don’t. If you miss an event because of your RA, ‘friends’ will say that you’re a malingerer. If you push through and force yourself to go, they use it as proof that you’re really not sick at all. Well, these were the friends I used to have. There’s only room in my life for those people that try to understand and accept me now. One friend who understands if worth more than a hundred of the other kind.
Hi, I was diagnois with RA 1995,started on methotrexate and continued on it for four months. felt better started back to work and quit taking it. I was without swelling, and relativity with out pain (except for a couple of flares) for about fifteen years.In 2011 i started experiencing pain in my feel, swelling in my hands,wrist, fingers, fatigue, fever just feeling bad. My Rheumatologist started me on Methotrexate again, and because of elevated sed rate increased it to 17.5mgs. I was sick most of the time when I took this so he recommended Remicade infusions.After reading about it and looking at all the lawsuits against it I decided not to take it or methotrexate anymore. I changed my eating habits to much healthier deir, lost 15lbs and for a while felt good with little pain or swelling.Its been 10 weeks without any medicines and now Im beginning to feel tired again, pain has returned though not quite as bad,generally not feeling well…….I feel trapped!!!! Doomed if I do…..Doomed if i dont!!!!