This month has been a busy one and I was having quite a bit of rough days so I didn’t get to blog as much as I wanted to. I think it’s been about a month since I last wrote a new post. I never intended to go that long, I was just having a lot of rough days and didn’t feel good enough. So now I can finally write another post! Instead of the typical blogs I thought I would just bring you up to speed as to what’s been going on this past month.
At the beginning of October I had a tilt table test done. If you don’t know what a tilt table test is it is something doctors use to essentially cause a fainting episode. I have been having issues with getting really dizzy and rapid heart rate upon standing so they check what’s going on by doing a tilt table test. It is like a normal hospital bed except it has straps over it to keep you strapped in so you don’t fall. You lay down for 10 minutes and your hooked up to an ekg and a blood pressure cuff and they are checking your vitals. Then the bed tilts up to about 80 degrees. They have to add an iv just in case you need one and I had to wait like 45 minutes for that because the nurse tried and couldn’t get it and then she had to call 2 different people from 2 different departments so it took a while but finally they got it in (I have such luck with blood draws haha not) and they didn’t end up using it she said they rarely use the iv but they have to put one in. I hated it and wanted to be done as soon as the bed tilted up. I definitely would have fallen if I hadn’t been strapped in about 5 minutes in my legs of course turned into jello and started shaking. Then as time passed I started feeling awful like the room was spinning I was getting really tired and I was dripping in sweat. I think it was about 20 minutes in I said I’m going to get sick and sure enough I did… (I quickly learned that’s why you couldn’t eat anything 4 hours before the test which thankfully, I followed the rules) I was very close to passing out but they lowered the bed back down but wanted me to stay sitting for a couple of minutes to monitor some more all I wanted to do was to lay down. I started to feel a little bit better after I was sitting for awhile and they brought me really cold juice and that helped. So I had a “positive” test as the nurse told me because I got sick and couldn’t stand the whole time but she said it was a interesting test ha. She said I presented all the symptoms of what they are testing for but my numbers (blood pressure and heart rate) didn’t change a whole lot like they typically see. My mom and I started to laugh because that’s how my health goes- I present everything for something except typically one thing is missing. So I go to the cardiologist next week to find out the results. He had warned me at the initial appointment that I probably wouldn’t react well to the test and that I was probably going to get sick and to maybe take off work the next day. Knowing my health I took the next day off work because I knew just standing was going to be really painful on my body. So after the test for the next 3 days I was pretty much confined to my bedroom and really only got up to go to the bathroom, this was because every single time I sat up or stood up I started throwing up, it was awful. My body ached so much from standing also. I ended up missing that week of work which I was pretty sad about. The test was done on October 2nd and its now October 29 and I still haven’t fully recovered from it. I get dizzy and my heart rate goes fast more quickly now as I stand up. It is getting better but I just haven’t felt the same since the test. So that’s a big reason as to why I wasn’t blogging. I was sick and worn down. I have had a couple of really rough flare ups this month also. A big part of that is all these weather changes. I get way more tired and everything aches double and my joints just get red and swollen. I have been diagnosed with 2 different types of chronic headaches and I get migraines I have been dealing with the headaches for about a year and half now. The migraines I started getting in middle school. This month my headaches became really intense at times I had multiple migraines this month also. Again I don’t know if thats associated with the tilt table test or all the weather changes.
Earlier this week I went back to Cleveland Clinic again. Dr. Gota said there isn’t much change and there isn’t a whole lot right now to do to change that. So we are keeping the same course. I haven’t improved at all but I haven’t had a huge decline either so that is what she means about not much change. We talked about how water aerobics made it way worse for me. She wants me to try to do physical therapy in the water, instead of aerobics and see if that helps. I am going to see another pain management doctor locally to see if he has any ideas. I can’t get any shots or pain medications so she is hoping he will offer some tips. She also is making sure I finally get a sleep study done since my insomnia has gotten so bad. I normally fall asleep at 4 and have to wake up at 7. Other days I normally sleep in but it isn’t ever rested sleep. I was supposed to get a sleep study done this summer but there were some issues so hopefully this time it works! Dr. Gota also talked about trying to set more goals that are actually achievable. She said set goals you know you can accomplish so don’t set goals like I want to get out of the wheelchair, or I want to clean my whole room. She said set goals like I can go see a movie this weekend stuff like that. So I am trying to do that. I have an appointment with my local rheumatologist coming up also so will talk about some more things with him and seeing if I need another opinion or what to do. I don’t have to go back up to Cleveland till spring unless I start getting worse. She said 6 months because of the winter coming up she didn’t want to make us drive out if the weather is bad and there isn’t a whole lot of changes to my treatment. So in the aspect of just talking about my fibromyalgia the appointment went pretty well. We really like Dr. Gota. I just wish there was a doctor out there that could figure out all my issues and diagnose and try to relieve some pain. Hopefully someday we will get there. Until then its just a continuing waiting game. So there is the update! Hopefully I can start blogging again more regularly like I was doing!
“Be joyful in hope, patient in affliction, faithful in prayer” – Romans 12:12