Well, today was the much-hyped trip to Birmingham for my new rheumatologist. Unfortunately, it was a bit over-hyped. I got there early, and was taken back right away. That part was pretty cool. My mom went with me, which was a nice change of pace. There was no checking of vitals, which was a little concerning.
Mom and I waited…and waited…and waited. Eventually, the doctor came in. He asked a few questions, frowned at the incredibly thin records (explained below), had me change into a gown while he left the room, had me sit on a table that was about 18″ off the floor (too close for my legs), barked out orders about how to breathe for him (2 deep in and a few shallow–no breathing out, no real listening), looked at my eyes for a minute, did strength testings on my hands, checked a little of my range of motion, looked inside my mouth for a second, told me I didn’t have Sjögren’s (or Lupus or any type of inflammatory arthritis), said he was going to order some tests, said that I should see other doctors instead of rheumatologists, was uninterested that I’ve been having near-fainting spells lately because my heart is getting more out-of-whack (I know he’s a rheumy and not a cardiologist, but still…), told me that for those spells I should see a neurologist (which given that they’re related to pulse & bp is kinda nuts), and left. Five minutes. Those five minutes that I had traveled for 2 hours to Birmingham for. Those five minutes where he told me that anything I had previously been told was true was now considered invalid. Those five minutes that I’d actually kind of looked forward to since I figured I might actually find a rheumatologist that spent more than 5 minutes and actually listened. Those five minutes were basically ones that I wished I could have back for the next hour and a half, as I went from crying to stunned silence to horrifyingly bad migraine with a numb cheek (which happens with some of them).
I cried when I was handed the lab sheet from the nurse. I lied and said I was fine to her. I cried as I went down to the admitting office. I cried as I filled out the information. I lied and said I was fine to the receptionist, too. I cried when I was having blood drawn, which freaked out the phlebotomist. (She hit the vein on one stick and didn’t leave a mark, so kudos to her.) She tried to get me to calm down. My parents tried to calm me down, too. I sat in the backseat and cried until we got to the Rest Stop. I finally told my dad what had happened, though my mom might have told him earlier, since I hadn’t really been much for talking for a while. I was almost back to my normal semi-melancholy state by the time we had lunch in Cullman.
I tried to remain a bit more positive on the rest of the ride home, and when we got home, I promptly made a list of every doctor that I could remember seeing since I was a small child. I found the addresses and phone numbers, and I found the fax number for some of them. I then found the rheumatologist’s email address and sent him the list. I also wrote a letter to him.
This is Janet Morris. I saw you today at the UAB Highlands Clinic. You commented that you didn’t have any blood work or any medical records other than what UAB’s Family Medicine Clinic in Huntsville sent. I have attached a list of every doctor that I have seen since I was about 6 years old. I would have gathered the medical records, lab reports, x-rays, imaging studies, etc. that I had done over that time period, but I didn’t have the money to pay each doctor for a copy of those records. Your office, on the other hand, can request these and get them for no charge. I have also attached the blood results from a blood test that was run by ************, my neurologist, in June of 2010.
I don’t know if you were having a bad day, if you were upset at the lack of records, or if you are normally that short with patients, but it seemed like you felt like I wasn’t worth spending any time checking. I know that it makes your day harder when patients don’t have a complete history with them, but that doesn’t seem like a reason to spend 5 minutes and automatically dismiss their history. You didn’t bother asking if I had anything more than dry eyes or joint pain before telling me that I didn’t have Sjögren’s, Lupus, or any kind of inflammatory arthritis. I have dry mouth, anhidrosis, and a rash that comes and goes pretty regularly. I also have a normal temperature at 97 or lower, unless I’m upset, sick, or go without water or eyedrops for more than 1-2 hours, at which time my temperature goes to 99 or 100. The fainting thing that you recommended I see a neurologist about was actually due to my heart rate going to the upper end of its normal level (which is typically between 95 and 145 bpm) or my bpm going up to about 100/140, which is far from its normal level of about 100/60.
As my list shows, I have seen multiple doctors over the years. Some have found problems. Others have been dismissive towards me. I had been going to see ****** who thought I had Sjögren’s, Fibromyalgia, and Joint Hypermobility syndrome, but he recently started acting like I was a waste of time, so I thought I’d try UAB’s Rheumatology department.
If you could at least try to get the records and look them over, I would appreciate it. If this is just another waste of time, then I’m sorry, but please at least try to figure out what is going on before you completely dismiss me.
I doubt that the letter will do any good except maybe brand me as a total nutjob or a hypochondriac or something, but I am so sick of going to doctors and having them just ignore me or say, “Go somewhere else.” It would be one thing if this was a rare occurrence or if this had happened in town, but this happens at the majority of places now. It happens with specialists, some of the UAB family medicine doctors, and (worst of all) when I go to the ER. (The ER likes to put me with the drug-seekers or just give the minimum care.) I am pretty much at my wit’s end when it comes to this kind of stuff.
Oh, and when we got back to Huntsville, my mom had my dad go by Sonic to get the Red Velvet Cheesecake Blast that I had asked for for my birthday. (It had been forgotten before, so we figured today was as good a time as any.) When we got there, the Sonic person said that they were no longer making them, but they made a Red Velvet shake instead. (No cheesecake or whipped cream.) So, the one thing that I had asked for for my birthday was not available.
Today, for lack of a better word, sucked for me.