I’m a bad patient

I’m not a success story. My body doesn’t follow a set of rules, or react as expected and this is just one example. My physical therapist finally said, you’re done here until you get a second opinion. She finally stopped ‘beating around the bush’ and said, you shouldn’t be here anymore because most people leave PT way before this. (She tried to say it as nicely as possible.) Would have been easier if she just said go away. The last three appointments before my last physical therapy appointment that I’ve had the therapist spent much of the time asking me how I felt, what I was doing, and how it felt after I did x or y exercise. Every time I thought I was walking out with a plan. Every time I was confused why we were going through these steps. Every time I noticed more and more faces, less and less feedback. (Each appointment was 4-5 weeks apart. She never clearly said if I was meant to be doing anything different in between appointments.) Every next visit something was different. Then, after what became my last appointment everything became clear. My theory, my assumption, was my physical therapist’s boss didn’t want her spending time on me anymore. I wasn’t making enough progress.

Probably partly because I have pain and problems with exercise that are super difficult to explain.

Probably partly because my physical therapist doesn’t truly understand the different effects multiple sclerosis symptoms can have on different people. There’s too much variety in the symptoms.

Probably partly because I’m not like the typical physical therapist patient who comes to get something fixed after surgery or an injury. I’m different.

Probably partly because I take more time than the average patient and I’ve had more intensive therapy than the average patient. Similar to how I see more doctors. And I ask questions about anatomy.

When I left the last appointment she was saying things like maybe I need to get a second opinion and, again, asking me what I wanted to accomplish in PT. – My previous plans weren’t good enough after someone else had reviewed my records/her reports. She suggested I email her  my schedule so she could give me pointers on how to increase my activity. We did that another time in the past, she didn’t follow through. I said sure, knowing nothing would come out of it. Then, out of the blue she followed up a week or so after my last appointment via phone. Why would she call when she stopped replying to the majority of my (occasional) emails with progress reports. I don’t even remember the content of the call because I said what she wanted to hear. She wanted me to go away, so I finally have and that last phone call was for her to get her due diligence completed.

Chronic diseases make you a patient some doctors don’t want to deal with. MCAS makes you a bad patient and it made me a bad patient for physical therapy because I continued to have something happen that slowed down my progress – most of 2017. Like a migraine for a week more than once, or 3 weeks of antifungal treatment via PICC line. Or an allergic reaction that left me sick for a week. Or I tried increasing how often I did my physical therapy at home, and it was too much, and my symptoms flared. Nothing is easy. Just once I’d like to be able to do what is supposed to make me better AND have it make me better. All year my physical therapy was one step forward, two steps back, or two steps forward and one large step back. Sometimes one step forward, nothing backwards. As compared to where I was a in January of 2017 I’m better, definitely, but I have plenty of problems and as of yet, no medical professional who wants to take the extra time to understand.

MCAS defined

Chronic life: June and July 2017 doctor visits

I actually had a bit of a break from appointments in June because a good friend visited but that’s not the point of this point. The point of the post is which medical professionals did I see.

June was definitely a quiet month. I’m still going to the chiropractor weekly. Both the adjustments and the acupuncture help. Actually saw the chiropractor five times in the month of June. Then I had physical therapy twice. I’m glad I can manage that twice a week now. I received my Xolair and that was a happy day. And then beyond that I just had a counseling session – which made me realize how damn busy I’ve been in the past 6 to 8 weeks – and I had my – what do they call it? – “women’s health exam” and had hormone levels checked too.

That’s only a total eleven appointments in the month of June! Ranging from 25 minutes to a little over an hour. Each appointment is 50-60 minutes in the car, round trip.

And now we’re in July.

This Friday I get my next Xolair shots and see the chiropractor. I’ve got 3 or 4 chiropractor appointments scheduled. I might cancel one depending on how I feel. I only have one physical therapy session scheduled so far. I might wait 3 weeks for the next one. I’ve got a physical scheduled with my new-ish internist and I’ll have to go on another day to get the labs done since I have to fast. Beyond that, there’s three different specialists and then a hand sonogram.

So let’s see, that’s a total of eleven appointments again. And that doesn’t count the dermatologist visit I probably need to schedule and another round of Xolair if I can really (fucking finally) get it scheduled for 3 weeks now.

All of this while somehow managing to game, go to the movies, and make it to knitting group. And four and a half days of migraines. Seriously, about 86 hours, when I look back at my migraines app. Just 4 different migraines though.

I wish I got paid for my job instead of having to pay other people. Or maybe an assistant to keep track of my schedule at the very least? I’m a professional dammit!