Another chronic illness blogger has been kind enough to let a bunch of us tell our stories on her site, and late last week my most up-to-date info was included. She has indicated that she may discontinue the series if she no longer has parties interested in being part of the project, but there are so many of us out there that I would be surprised if the well ever dried up.
Today was a really big day in my little alien world. I finally got the upright MRI that I’ve been asking for for 6.5 years. In all of the 56 doctors that I’ve seen, it has only been the most recent neurologist who hasn’t fought me on my request and put the order in.
So I got strapped into a chair and a cage was lowered over my head and screwed into place like I was Hannibal Lector. Like I was ready for some football and to call out some huts! I was sandwiched and squished between two huge, white panels, a bar propped between the panels for my hands and then one lower for feet to rest on to make my very own roller coaster ride more comfortable.
A couple of times the tech buzzed in and said, “I’m picking up movement. Try to keep very still.” I had explained to her that I sometimes have trouble with tremors in my neck when we were going over the questionnaire, but maybe she’s heard that line before and doesn’t think it’s important to remember. I breathe with my diaphragm, so at a break between segments, I moved my arms as far away from my torso as far as the sandwich bread slices would allow me – that way there was less of a chance that my smushed arms would move my head when I breathed.
The tech had given me the option of tilting the chair back at 30-45 degrees, but I explained that it would compromise what we are trying to catch on imaging, so I had to stay completely upright. The MRI takes about 40-45 minutes, and to make sure the pressure in my skull was really high, I exercised my arms for about five minutes both before the cab picked me up, and then again when I changed my clothes. All I have to do is mimic the bicycle motion with my arms like what I do in PT and I nearly go completely blind from the pressure in my skull. This is why I can’t exercise. I would probably give myself seizures.
At the end of it when I was extricated from the face trap/sandwich boards, I got up to walk and ended up stumbling around like a cat coming off of anesthesia. I had to have a lot of assistance to walk back to the room where my cane was waiting for me. I might have said, “No, I don’t need a fucking walker.” This scan had better not let me down.
The Sick and the Dating 
Hi Chelsea, I’m glad you finally got your stand-up MRI. It only took over 6 years??? That is just crazy!!! I hope it shows what the hell is going on with you so these doctor’s can finally help you!!! Be sure to let us know what the results are. I’m still sitting here waiting for my Craniotomy surgery!!! I had to cancel twice due to getting sick and they have rescheduled it 3 times. Now, I am down for Jan. 4th. I can barely do anything either because the fibro is kicking my ass and the sinus disease. I go out once or twice to do whatever and I’m in bed for the next few days. Does that happen to you from the fibro because I know you have a lot of appointments? I have had asthma too since I was 4 so am on 3 puffers. Right now I’m so tired I feel like I’m 80!!! Anyways, always enjoy reading your blog!! You are such a trooper and love the fact that you sing at the top of your lungs sometimes!!!!! Cheers! Cathy
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Hi Cathy – wow, I cannot believe you are STILL waiting for your surgery! I understand, but sheesh. You know, Dr. Afrin, who diagnosed the mast cell activation disease, thinks that my fibromyalgia is happening because of the disease. Is it at all something you’ve considered? You have asthma, and you have sinus issues, and lord knows we have all of those things in common. The tough thing is that mast cell activation disease has only been studied for the past 8-9 years and so they don’t know much about the subclasses or causes and effective treatments for each, so it’s really still a lot of trial and error. The testing also can’t be done by just any immunologist either, it has to be done by someone who is really familiar, because the urine and the blood have to be refrigerated IMMEDIATELY – ice packs at the drawing tray and everything. Anyway, I’m not trying to be a jerky armchair expert towards you, and of course you know what’s best for you and your situation. But if I can shorten a diagnosis time for someone, I’m happy to be the guinea pig. As a side note, I did try to look at my MRI images today, but they won’t let me see them before my doctor has my appointment with me so I can have my freak-out in person with her first. Curses, foiled again! Where’s my Christmas wine???? Cheers right back at ya! And we’ll toast to your surgery too!
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