*A five month update can be found here, and a one year update (August 2018) can be found here.*
Tuesday two weeks ago, me, my mom, and my brother all set off for Rochester, Minnesota, where the main Mayo Clinic campus is. This involved two airplane rides and almost two hours in a car, so it was fun times. Additionally, the airline left our luggage behind, so we had to make do with our carry-ons the first day.
Wednesday was my initial appointment with a general medicine doctor. She took all my information, did a thorough exam, and then altered my schedule for the week to add the appointments she thought I needed and remove the ones I didn't. A few of these appointments were scheduled for after I left, which meant I was now "on checker," as they say there: I had to wait and see if there was an opening I could be moved up to. This made me pretty anxious, but as it turns out, Mayo Clinic is really quite good at fitting things into your schedule.
After that, I got some information about an oximetry test I'd have to do, and then headed home to collapse in bed. I was exhausted, but I didn't feel quite as bad as I'd expected. This is largely because we took advantage of the wheelchairs at the airport and all throughout Mayo Clinic. Throughout the week, Mom wheeled me around the nineteen floor, multi-building complex instead of having me walk.
Thursday, I had my blood drawn first thing in the morning, while my brother went to his own appointments. We had to wait about thirty minutes for that.
I went around for a bit to check on my checker appointments, ate cottage cheese and vanilla pudding in the cafeteria (yay for limited diets), and then had a gastroenterology appointment. After an awkward examination, they theorized that I had pelvic floor dysfunction, which would contribute to my irritable bowel syndrome and interstitial cystitis symptoms. Unfortunately, due to transportation issues, we weren't able to get that confirmed while we were at Mayo Clinic, but I'm on a waiting list for a physical therapist here at home to do that.
Then it was back to bed.
Friday, I managed to get in for an autonomic test, which was probably the most interesting part of the trip. They put electrodes on my chest to measure my pulse and such, then put some more special electrodes on my leg and arm that sent electricity into my skin, stimulating the sweat nerves. Then they had me breathe hard into a tube while they monitored me, and then they monitored me separately standing up and lying down. It was exhausting.
I checked in with my general doctor after that, and she told me to stop most of my supplements and that was confident that the appointments I had on Monday would give me most of the information I was looking for. So that was the end of that day.
Saturday and Sunday, Mayo Clinic is closed, so I went to visit the county fair! I don't know if I've ever been to one before, but apparently they're a big thing in the Midwest. Now, I'm sick enough that I could only handle visiting the baby animal center, so that's what I did.
So that happened. I also had cheese curds for the first time, which was pretty cool.
Then I went shopping with Mom at Walmart, which doesn't sound like a big deal, but I haven't been able to do it in forever. I had to use one of their wheelchairs to get around, which I find extremely embarrassing, mostly because they make these awful beeping noises when you go in reverse. Like, why?
Monday, it was back to appointments, my busiest day. Unfortunately, my IC had decided to flare up in protest to everything I'd done the past few days, so I was in a good bit of pain. First, we saw the neurologist.
She did an examination and then informed me that the autonomic tests showed I do have mild postural orthostatic tachycardia syndrome (POTS) as well as neurally mediated hypotension (NMH), two conditions where, basically, your body doesn't adjust well to being upright, causing a rapid heartbeat and other symptoms. She said that these conditions would probably go away on their own once I was more active, but in the meantime, I could treat it with salt tablets, compression socks, and exercise. She also informed me that the tremor I've been dealing with is benign, a natural reaction to the stress my body is under, and that it should eventually go away on its own.
It wasn't as dramatic an answer as I'd expected, but I was happy! I had some new things to try at last.
After that, and after a lot of stress trying to get transportation to a different Mayo Clinic building, I had a fibromyalgia consult, where they checked me over and confirmed that diagnosis. They told me that I also have chronic fatigue syndrome, the sister syndrome to fibromyalgia, which is basically exactly what it sounds like. Then the doctor walked us through a presentation about central sensitization, which is the mechanism behind fibro/CFS and a part of the cause for all my other conditions, too.
In basis, central sensitization tends to happens in susceptible individuals (often due to genetics and excessive stress) after they experience some sort of physical or mental trauma. A "switch" gets flipped in the brain that messes up the functioning, creating a permanent state of "flight-or-flight" compounded by steadily increasing pain signals. The longer a patient is in pain, and the more they focus on it, often the worse it becomes, because more and more parts of the nervous system become devoted to pain processing. This is a potential explanation for my tremors; sometimes, in worse cases, even the motor neurons will begin sending the pain message, which causes a lot of confusing signals and can lead to muscle spasms and the like.
In my case, I've gone through two of these traumas: first, in October 2009 when I developed fibromyalgia after having H1N1/bronchitis/strep, and then again in May 2014 when I had an unknown abdominal infection and then reacted badly to a medication I was given to treat that infection. After the first trauma, I was able to get my fibromyalgia under control and reach a level of functioning that I was happy with. However, the second trauma sent my fibro spiraling out of control again and caused me to develop many more related conditions.
Now the challenge is to work my way back up to the level of functioning that I can be happy with. Slowly.
Tuesday, I didn't have any appointments, but Wednesday, I spent eight hours in a clinic devoted to teaching fibromyalgia/CFS patients exactly how to do that. We discussed all different kinds of lifestyle modifications that can be used in conjunction with approved medicines to control these conditions. I won't go into detail in this post, but in essence, after central sensitization patients receive their diagnosis, we have to find a stable activity level that we each can operate on without setting off extra flares. Basically, imagine a graph of a line as opposed to a spiky, up-and-down graph.
Once we know what that level is, then we add onto it very, very gradually, little by little, using the methods that they discussed in the clinic. Eventually, as we push ourselves forward, our brain readjusts enough that we can make it to our desired functioning level. The symptoms are still there, of course--only in rare cases are people cured of these conditions--but they're reduced enough that the patient can live their life again.
It was a lot of information, and a little overwhelming, but it really clarified things for me. The most important thing I realized is that I've actually been exercising too much. Because you often hear that exercise is good for these conditions (and it is), I've been trying to stay at the exercise level I was at before my second trauma, even while everything else in my life has fallen apart. But that's only made everything else all the harder. What I need to do now is back off on that, find my true functioning level, and then work my way up, like I said, very slowly.
Thursday, we flew back home, and since then, I've been working to apply what I've learned.
Overall, my Mayo Clinic experience was good, informative, and important. I'm really glad I went, even though it was a wee bit less dramatic than I thought it would be. Now I know what all I'm dealing with, and I have a whole packet of information on how to overcome it. It's going to be a slow process, but as I improve, I'll let you know how it's going. Someday in the future, I'll post more details about what I learned at the fibromyalgia/CFS clinic in particular, so that any of you who are stuck in limbo like I've been, trapped by your sickness, can better find your way free.
In the meantime, I will continue doing what writing I can manage, and hopefully, by this time next year, I'll be able to resume my writerly career as before.
In conclusion, MAYO CLINIC DOES NOT HAVE A THIRTEENTH FLOOR!!!
In other conclusion, I have never seen so many disabled people before, and it was awesome.
Thank to all of you for reading and for sticking with me through all of this. I will post again on Wednesday, per the usual.
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