Tuesday, October 31, 2017

OT, PT, and Rheum, OH MY!

I have so much happening medically lately that I am (frankly) really overwhelmed. I feel like it would be really great to have someone to go to all of my appointments with me but then it feels like such a pain for people and honestly, pointless? Like what are they going to do? I'm struggling with being in control of as much as possible and coming to grips that I can't be in control because I'm just not capable anymore. I am learning that it's really hard to give up things and admit it's time to let go.

One of the things I really struggled with while I was hospitalized was physical therapy and occupational therapy. Matt says I was adamant that I absolutely didn't need either, there's nothing wrong with me, having a baby doesn't make me handicapped.

Clearly I didn't have a handle on what had actually happened to me.

I've gone an entire year not needing either and my therapist flat out said to me a few months ago that maybe, maybe, I need to reconsider that. That maybe my impairments aren't going to improve, but maybe there are modifications that could help me be less frustrated and angry about it. Maybe I won't be running 5k's and training for a half anymore, but maybe there are exercises I can do to make it less painful to get out of bed in the morning.

She isn't wrong. I know it in my head, logically, but dammit. I hate that this is what my life has come to. Needing modifications and exercises to stay mobile.

So last week I met with a physical therapist, Dave, and an occupational therapist, Anne, really briefly. I'll meet with Anne more maybe sometime this week even (my appointment has to be rescheduled since Friday we had a bit of a nasty winter weather day and they didn't want me to try to drive there), we'll see. Dave the physical therapist was really great, though. He wanted to know the whole story, he wanted to know what I was like physically before and since. What hurts, what doesn't, what happens if I do this or that, what diseases and conditions are ruled out and what's still on the table. He was really great and the best part? It's happened a few times with doctors but it really makes me feel like they get it, when they look me dead in the eye and say, "Your situation really sucks. You should be dead, I understand why you still wish you were and I can't say I wouldn't feel the same." I usually always come back with, "well, it could always be worse. I could be paralyzed, or have cancer, it can always be worse" and Dave? Dave just sat there and said, "I guess. But this is pretty bad and I understand why you're at this spot. I get it. It's pretty bad."

I felt so VALIDATED.

He said he recommends me to come three days a week for at least four weeks, and that's significantly more than he recommends for most patients but that I'm kind of a problem. So I guess we'll see? I left there with three stretches to do in the morning, two before I even get out of bed and one after I pee (because let's face it, my bladder is really, really, REALLY full when I wake up) and I haven't really noticed a difference? It's only been a few days though so I'm sure in another week or two I might feel a little different. I'm hopeful.

Rheumatology... sigh. I feel like I don't have a good read on this doctor at all. Some interactions make me feel like she feels sorry for me because I'm clearly crazy, and other times she makes me feel like there is something wrong with me, she just can't figure it out. So my labs were kind of a mixed bag so she repeated a few of them this week. My inflammation one is still high but something with my muscle is OK so she started me on Plaquenil to see if that does anything for me. That's a drug used to treat Rheumatoid Arthritis and Lupus, so now I'm like- I thought you said my tests were negative, why are we doing this?! After reviewing my family history and seeing my mom has RA fairly severely, she tells me that sometimes you can still have RA and Lupus with a negative test.

Honest to god, I don't know what to think anymore. I'm not kidding.

So I've taken that for like 3 days now, feel no different. I'm so incredibly tired though and I wish we could find something that fixes that. She wanted to start me on Prednisone and I just really, REALLY don't want to do that. It's another steroid, I have never heard of or seen anyone have a positive experience with it, I don't want to gain 50 pounds in two weeks, and I'm always angry and lashing out now, I can't afford for it to get worse on that. I voiced all of that and I told her I wasn't thrilled about it and I see she did not call it in. So maybe she listened? I'm going with that versus she forgot about it, because she seems pretty thorough so I don't think she would have forgotten.

But as you are reading this, I'm at the Mayo Clinic. Today I'm taking the fat kid education class in the Bariatric Clinic (mandatory before you can see one of those doctors) and then I am going to the Women's Health Clinic to talk about my estrogen replacement options. It's an exciting day, right? Well, I'll report back on the thrilling details later. In the meantime, I really hope that my appointments end early enough for me to get on the road before noon so I can take the kids Trick or Treating. I'll be really sad to miss that.


Lauren said...

Your PT sounds amazing! I'm glad he made you feel validated. I do hope you can take the kids trick-or-treating tonight!!!


Ruth said...

I hate the "It could be worse, I could have_____". To me that negates how things are for you. My husband says otherwise. Whatever. I don't like feeling shit and thinking well they have it worse. Maybe so. But, doesn't mean things are any better for me.
Prednisone is evil. I am convinced of that. My husband is finally down to 5 mg a day, but started out at 60. Ended up with a goiter, gained a ton of weight, edema, fatty deposits around his neck so bad it choked him when he laid on his back, sore teeth. That is only the worst of it.
Take care of you~

Anna (herding cats-burning soup) said...

That's awesome you've found a PT that works for ya! Such an important thing to have in your corner :)