Thursday, May 10, 2012
You're Kidding Me, Right?!
Remember my post last week that The Cleveland Clinic called me and told me the Dr. wanted me to have some other tests done, and a consult with another department? This was a week before my scheduled appointment for today, May 10th. They loaded up my day, starting at 10:45am with the last test scheduled for 3:15pm directly after my rheumatology appointment.
I get nervous when I'm with the doctor, and half the time there's things I want to discuss with her, but then forget. Partially due to my nervousness and partially due to the dang Fibro Fog. This time I was good. I sat and wrote out a list of important things I wanted to discuss with her. I knew, after having so many appointments in one day, and after the 2-hour drive to get there, I'd never remember everything without my list.
I was actually excited to talk with my rheumatologist today, because I've really been struggling. I need some sort of med change because what I'm doing, just isn't enough. I've had some days lately where I can hardly move my legs enough to walk. The insomnia has been terrible. Depression has set in between the physical pain and the fact my husband walked out. I've been worried and stressed about money, because I hadn't worked in years and my pain and fatigue level is just too much right now for me to work. I have a lot on my plate right now both physically and emotionally. I've been doing a lot of research, because I've felt like something has been overlooked due to the fact that I always have an elevated SED rate, always have a negative RF, and I've had 1 positive ANA and 1 negative ANA. I wanted to discuss the idea of polymyalgia rheumatica with her today. A dose of steroids and maybe we'd have an answer. It can't hurt to try, right? I may get lucky and reduce and/or relieve the pain. My symptoms fit and my blood results fit. I was soooo excited to possibly have an answer to reducing my pain today.
We get to the hospital campus, and are trying to find parking garage 2, but we keep hitting all of these one way streets. STBX was mumbling a few curse words and I kept apologizing. He kept telling me none of it was my fault, so to quit saying "I'm sorry". We finally find the garage, but of course all of the spots on the same level as the catwalk that leads to the building I needed to go, was taken. We go up one more level and finally find a place to park. I felt nervous about the tests I was getting ready to do, but boy did it feel good to get out of the car. My back, neck and knee was killing me after the 2-hour car ride. We get to the cat walk and open the door to see policemen and a hospitality worker telling everyone to turn around and leave. What?! The guy says to us "I'm really sorry but all appointments in this building have been cancelled for today. This building has lost water and power. Please turn around and leave. Call tomorrow to reschedule your appointments.". Oh. My. Gosh. You're kidding me, right?! "No mam, I'm not. I apologize for any inconvenience this has caused. Please call tomorrow to reschedule your appointments.".
So after walking back to the car, and heading back home, I started crying. I felt silly and didn't mean to, but I couldn't help it. STBX looked at me and was like "Why are you crying?". Oh boy did I want to unload and tell him ALL the reasons I was crying. I managed to choke out that I was crying because for 1. I'd borrowed gas money to get there from my parents. 2. STBX had to take a vacation day (that he was already in arrears on but he has a GREAT company who approved it anyway knowing my health issues and that he had to take me to Cleveland. 3. Because I was hoping for a med change because I can. not. take. this level of pain for much more. 4. Because I was hoping to be able to look up todays tests, tomorrow online on the MYCHART site. After having almost completed nursing school, I know what I'm looking at and I'm really really worried about my WBC. If it's elevated again, I have to go see a hematologist. That scares me. 5. I'm crying because I just can't take one more thing going wrong in my life, at this particular point in time.