...Seems to be my theme of late....And I'm letting it run me ragged. I met with my rheumatologist today. Actually, she ran into my head, legs first. I'd taken my wedding rings off to put lotion on my hands while I was waiting to see her and when she came into the exam room, I was on the floor frantically searching for my wedding band. When she asked what I was doing, I told her, holding up my engagement ring with my left hand, to show her that I had that one, but could not find my wedding band. She pointing to my ring finger, where my wedding band safely sat. Because I'd never taken it off.
"Now will you please listen to me???" I begged. "This is an every day occurrence. An EVERY HOUR occurrence. I am losing my mind." I gave her the rundown of every symptom I've had in the last 6 months (again), even the ones that don't fit my current diagnoses (again), asking her to once again consider something else (again). She simply reiterated that I should make an appointment with the hospital center in the next state, an additional two hours away because she doesn't know what else to do for me anymore (again). (When I again explained several reasons why it's really not an option, starting with child care, she made my husband taking the day off from work to go with me and the boys to this hospital for the day sound like a walk in the park. Sure, would she like to come with us, the two year old temperamental, tired toddler and the ten year old with Asperger's and possible ADD/ADHD for the day while I battle fatigue and other assorted issues, my husband deals with traffic and we both deal with the kids? Geez Louise, woman!) Sooooo, that's it? I just drove an hour and a half in anxiety-producing traffic for five minutes of head-patting and "Go see someone else"? Just to humor myself (and her, I suppose), when I got home, I called the specialty clinic at this hospital center when I got home to try to make an appointment. Years of experience trying to do this sort of thing have taught me it would not be worth my time. I was not disappointed. The secretary informed me that, as a potential new patient, they would not deal with me, only my doctors. My doctors would have to submit all of my records, biopsies, films and relevant lab work, along with referrals. Once the clinic has received all of my records, reviewed them, and only if the clinic doctors deem me a good potential patient, I'll receive word from the clinic. Nice touch, huh? So, not to continue to be a drama queen, but what am I supposed to do if they decide I won't be a good candidate? And that leads to the next question.... My rheumatologist has been pushing this hospital center (one of the best in the country, THE best this part of the East Coast) for several months, so why didn't she already know about this protocol? At this point, I can't trust her to return a phone call in the same week, so how am I supposed to trust her to make a referral and get all of my records to this clinic? At one point in time, this doctor was the best; she is one of the top rated in the state I live in. She was my diagnosing physician. When I was first diagnosed and saw no hope, she saw it for me. She danced around the exam room with me when I told her I was finally pregnant with Avery. So, what happened to the good doctor routine? Today, I walked out of her office without even saying goodbye, without even acknowledging her. I couldn't because I was crying too hard. I don't think I will go back, but I don't know where else to go.
Honestly, I'm ready to give up and throw it all in. I'm ready to stop seeing doctors, stop taking meds and just see what happens. A huge part of me is resisting the hospital center in large part because I just don't want to take the chance of going through this whole rigamarole just to be turned down and have to go through it all over again. I've been through two other hospital centers already: One research hospital laughed at me and told me to stop wasting their time. Another well known university hospital took one look at all of my bruises and called in social services, thinking my husband was abusing me. I know the doctor thought he was just doing his job properly, but if you know my husband and his family's history, that is not only laughable, but an amazing insult to Shawn and his mother's memory. I had told the doctor as much throughout his questioning; having him call in social services was another case in my long history of not having doctors listen to me and take me seriously.
A huge part of me is just done with all of this. I want to be done with this. I need to be done with this. What "being done with this" means though, I don't know. A final diagnosis that makes sense, a treatment that works and a doctor who listens? Moving on with my life? I'm a mom and a wife. I don't have time for this nonsense. I'm tired of banging my head against the same brick wall and getting nowhere, but I'm afraid to take the next step because I can't be certain it will be better than the last one. And I'm also afraid because I honestly just don't know what the next step is.
