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...
So, I gotta say this just frustrates the s$&@ out of me. This is what we already know, and I hate to beat the deceased equine...
I caved in and went to an urgent care. I tried a walker boot on last night and it was heaven sent relief. I realized I need one pronto. Went to my local immediate care/urgent care because thw copay is MUCH less expensive. The doctor who saw me listened to my history of MTP pain, etc. Then she said "Why aren't you on a biologic?" I simultaneously wanted to scream, hug her, and cry. I know I made a face that looked like I sucked on a lemon. I replied "Well... I am seronegative.". She said "Ah... So?" She then went on to say what we already know. No two cases of RA are the same. It is highly individual because no two person's genetics are the same. You can be seronegative forever. She said you do not fit the mold of what everyone from insurance companies to doctors want to see. But this is how it is for RA, it's like cancer in that no two cases of cancer are the same. Sure there can be similarities, but they can be radically different otherwise.
I must have had a weird look on my face because she asked if that made sense. I said, absolutely, now would you mind telling rheumatologists that? She laughed and said she understood.
God you guys, WHY WHY WHY... Why does this very nice immediate care doctor understand and know this... And our "specialists" don't?
I caved in and went to an urgent care. I tried a walker boot on last night and it was heaven sent relief. I realized I need one pronto. Went to my local immediate care/urgent care because thw copay is MUCH less expensive. The doctor who saw me listened to my history of MTP pain, etc. Then she said "Why aren't you on a biologic?" I simultaneously wanted to scream, hug her, and cry. I know I made a face that looked like I sucked on a lemon. I replied "Well... I am seronegative.". She said "Ah... So?" She then went on to say what we already know. No two cases of RA are the same. It is highly individual because no two person's genetics are the same. You can be seronegative forever. She said you do not fit the mold of what everyone from insurance companies to doctors want to see. But this is how it is for RA, it's like cancer in that no two cases of cancer are the same. Sure there can be similarities, but they can be radically different otherwise.
I must have had a weird look on my face because she asked if that made sense. I said, absolutely, now would you mind telling rheumatologists that? She laughed and said she understood.
God you guys, WHY WHY WHY... Why does this very nice immediate care doctor understand and know this... And our "specialists" don't?
I think these stories will help someone else in the future. This support group is basically building an archive of seronegative stories that will save someone's sanity if they are confronted with denial or skepticism.
Love your doggie avatar.
Patients not receiving the care or attention they need.
Heck we here plenty of complaints about doctors from those who have proof positive of their disease.
My PCP brought up one point. There's not a lot of Rhuemotogist compared to other specialists. Lord knows finding a good understanding doctor is hard enough.
I worked in health care & know what's out there. Yet I delayed changing doctors. I could kick myself yet I had to have that final push of being fed up with poor care.
There's a fear at times of rejection or finding worse.
Beginning of my CP journey was tough. Not being an easy diagnosis I was sent to doctor after doctor only to end up in doctor induced depression. It gets to you. It's not like you want to give up yet in the back of ones mind are the what ifs? It's exhausting physically & mentally. Even knowing something's wrong or that you have a disease like Sero negative it's still rejection.
Your life, quality, future...........loosing faith in the medical community.
I guess the point I'm making is for some I'm sure it takes everything in them to start over again. Even knowing the current care is not near good enough.
Takes time to build up that courage to start over or to just realize you as a patient have had enough.
I can't say why those who need better care or acknowledgement remain with a doctor that is not aggressive enough in treatment but I do know looking & hoping can chew you up & spit you out.
I encourage change in care if need be. Yet I know that step of picking up that phone making that appointment can leave you holding your breathe praying this doctor finally gets it.
Fear of rejection is mighty strong & frightening.
There's good out there in our medical community but it's not always easy to find.
I approached finding a PM by asking if they provided care for a condition I had been DXed with. Knowing at the time many doctors did not acknowledge it but thought it was a "waste basket" condition.
At least it gave me some peace of mind going in.
Looking on line at Rheumatologist so many have no checked off for treatment of Fibro. Yet it was a RA doctor who just diagnosed me. leaving me to wander where does one go?
Perhaps inquiring before hand if fear of not acknowledging is a factor.
Im still battling fear of new doctors.
Cant really say why each patient remains with a doctor they know are not providing the best but I know there are reasons.
Sometimes it's lack of doctors accepting that insurance.
I'd love to see each of us have the very best care. We deserve it.
Just have to keep reminding ourselves of that.
Consults are wise. Never know until we try. It's staying strong & keeping the faith.
Thinking this should have been a new discussion.
Just wanted to put it out there. After all why do we accept inadequate care? Everyone has their reason.
Sammy
I would add cost. For me, it's $25 to take a shot at finding someone better. On other insurance plans I've had, it could have been upwards of $50-60. With absolutely no leads, and previous doctor recommendations turning disastrous, it can add up quickly.