From Kelly, author of the RA Warrior blog and this RA Warrior post
I'm beginning to realize I feel this way, to some degree, every time I see my PA. It was worse than usual yesterday.
I go to a clinic because I have no health insurance or income. What I do have is retirement savings that prevent me from qualifying for Medicaid. That means I should cash in my retirement fund, run through it and wait five years until I can prove I really, really have no assets. Yeah. Right. How does one live with a chronic disease which has no cure for the next five years? Please tell me how best to do this, and I will gladly let the state of Michigan know what to tell applicants who inquire.
Back to my appointment . . .when I am finally called into the area for exam rooms, the nurse asks me my DOB. I reply. He offers to push my wheelchair, which I gladly accept because my arms are too weak to push the wheels. (I usually propel myself with my feet.) He maneuvers me into a room.
"What's your date of birth?" he asks, sitting down with his laptop.
A portent of things to come? Is it his memory or a test for me? Is he even listening to what I am saying?
We follow the usual procedure of temp, BP, heartrate checks. "What medication are you currently taking?", as he looks at the form I just corrected as to current meds. I explain what was inaccurate about their computerized list. The change to my iron supplement intake was not noted. A prescription was on the list for medication I had never taken.
"Are you in pain today?" Yep, like always. "How would you rate your pain on a scale of 1 to 10 . . ." blah, blah, blah. (He must have missed my pain post with the new guidelines!) "Can you describe the pain?" Gee whiz golly, yes, at length. And it's apparently nothing interesting as he keys away on his laptop. Is he keying what I am relating? No questions, head nodding or any other affirmation I have an attentive listener under my spell. Oh, well, the PA will be here soon.
I am anxious to learn whether or not I qualify to receive Humira at a reduced cost. I filled out the paperwork request to the drug company last November. After 2 months, PA had finally signed the form and office was supposed to fax it two weeks ago. I have been surviving on pain medication and prednisone. They both treat symptoms, neither treats the RAD.
The PA finally comes in 30 min after my scheduled appt time. The first thing he says is I have been approved for Humira. Thanks to Buddha and everyone else! Finally some progress.
My blood work is not good for the iron - count was 10 at the time of my last visit. That is down from 14 the previous time. (A count of 15 is average/normal) So my iron supplement had been cut in half when the count was 10 two weeks ago. Damn. He wants me to see hematologist to see what can be done about this anemia.
I was really looking forward to an informed conversation about taking methotrexate in combination with the Humira. About 10% more patients respond positively to Humira when they are administered simultaneously. No go on mtx with the iron problem. Stuck in limbo again until the Humira is delivered to the clinic.
He also wants to refer me to a rheumatologist. Apparently, he has not found one with whom he can consult regarding my treatment. I am in agreement on this one. I need to have a current diagnosis from a rheumatologist to have any hope of receiving SSDI. (A conversation with a lawyer is a future blog topic.) In the meantime, come back in four weeks.
"I wish I could do more to help you."
I go to check out, pay my measly little co-pay with money I am grateful my daughter and son-in-law gave me and get my receipt. "You're all set. We'll make an appointment now." Hey, wait a minute! Where is my prednisone refill? I have to take prednisone every day until I am weaned off of it now. It's going to be my bridge drug until the Humira (fingers crossed) kicks in. I had exactly enough prednisone to last until this appointment. The clerk goes tearing down the hallway to find the PA. He comes back an writes the RX. Hurries off to his next patient.
I look at the script and show it to the clerk. "How many pills is this prescription for? Does this say '20'?" I ask. That's what she reads, too. "OK, I have to take this everyday. Make that appointment for 20 days from now, please." I can play this game. I'll be out of pain meds by then also, so hope they call me back for the Humira before then - or I'll have to get another RX for that.
You know what? I'm in no shape to be doing their job. Can't even get them to listen to me. I increased the pain scale rating I gave them by one, to let them know I am not feeling better. Oblivious to my increasing discomfort. The anemia (and low vitamin D) are known consequence of RA. I have been going downhill again since the prednisone burst dosing ended. Ten mg a day is not enough. My fingers are aching again, the index fingers are stiffening up, left thumb continues to slip out of joint. Large muscle groups are better, but now, the feet are aching all the time again. Along with the right elbow and my neck. The brain fog RAers talk about is for sure increasing.
I'm not asking for an increase in pain meds. I'm not trying to be difficult or unreasonable. I'm fighting to believe you really could do more for me.