At 8 A.M., I walk into the Women's Clinic at the Veteran's Clinic, expecting nothing in particular. This weekend was wrought with painful moments, with the shoulders each taking turns over which would pop out the farthest. Then, migraines hit with fervor, so I was fairly incapacitated for the entire 72 hours. This morning, I expected nothing. For years I had strolled into these buildings, hoped for some assistance, and was taken through the systematic methodology of "First let's try this.." as is the rules of the Veteran's health system. But today, I expected nothing, and got a doctor who listens.
Several weeks back, another doctor, my former "regular" one, ordered X-rays which were mandated prior to any pain medication changes. The FDA is scrutinizing a manufacturer that provided Oxycodone to the hospitals, and clinics, and therefore, my pain medications were reduced. At the same time, she orders Xrays to provide me with a cause to visit the VA's pain specialist. Reduction of pain meds, xrays, then pain specialist. Seems like an illogical step to me. Also, I was given the name of a local rheumatologist who is well-versed in Ehlers-Danlos, and figured he would probably appreciate these scans, so I willingly went along with the idea.
The Xray center is just downstairs from the Women's Clinic. When I walked into the office today, my new "regular" doctor, Dr. Valerie Schram, sat at her desk, looking at my reports. But, not just the reports from the radiologist, but the weight fluctuation, the medications, the history of visits, and oh, yeah, the blood levels that confirmed Hashimoto's Disease. This is the same doctor who, after seeing me gain and lose upwards of 40lbs in a single month suggested I may have a thyroid disorder SIX years ago... but was dismissed by the then, Regular doctor. She was trying to help me years ago. And, after my last visit with the Regular Doctor, I gave a sigh, walked into the business office, and asked to be switched to the one person in the system who seemed to understand at least part of what I was going through.
The former doctor sat with me for less than 10 minutes each visit, making empathetic commentaries, and yet, never quite did anything more than offer me more pills. This doctor looked at the prescriptions, and said, "oh, I see you're not taking antidepressants anymore?" showing me that she was truly reading the file rather than thinking about the previous patients' diabetes, and future patient's flu shots. Dr. Schram paid attention to me, as a person. And, after we talked about the issues with medications, and the reason why I elected her over the previous "regular" doctor, I asked about the xrays.
The first thing she said was, "We need to control your pain, and I think the best way we can do that is after the appointment with the rheumatologist." But she didn't just leave it at that, she said, "Until then, we need to find out what the correct dosage of your medications is NOW." Then she went through and handed me a new pain medication prescription that wasn't a "break through pain" one, or a "just in case" one. It's a testing prescription that allows me to increase or decrease my current morphine levels, so she knows what the correct dosages for me are, without guessing. After that, she read through the xray results. Not just skimming, she read through the notes, and locations of the issue. We are now aware, together, that my hips, hands, and wrists, and yes, even shoulders, have progressively been getting worse, by about 7-13% since the last set last spring.
There aren't any breaks, and there are no noticeable cracks in the joint sockets, which is great news. But there are spurs, and swellings, and other weird stuff that we get with a disease that makes you a private circus. On Friday, I pick up the CD of the images so that the new rheumy can check them out. But this doctor listened, and paid attention to the long term issues, and seems to get it. The xrays were something she had to have just to put me into the pain management program, anyway, but the idea that she's actively inolved in trying to make the pain bearable is a welcomed change.
The Ehlers-Danlos does cause remarkable changes in skeletal structures. In the exam room, I was twisting my elbow almost 80 degrees out of place when they took the first shots of it. On the report the phrase, "no obvious dislocation" made me laugh. I guess it's a normal thing to have someone's hand upright and elbow facing backwards when getting pictures done. But, the rheumy should know what the images really show. I've been given body scans, and MRI's, Cat and Pet scans. Kind of like an Animal Planet show, without the tails, although I suppose I do have tales, afterall. In the joint mobility spectrum, not having the pictures would make it harder for most doctors to see the issues faced by those of us with sublux and dislocation issues. But, since the tendons, muscle, and joint tissue hardly shows on these, it's likely I'm going to have more scans. I'll be sharing those with you, too.
Today's questions- How did you know you found the RIGHT doctor? What tests do you find reassuring to your condition? Do you feel like you need a pain management specialist to assist you?