"Suffering the Slings and Arrows of Outrageous Fortune"

Catching up

I have been so busy and more than a little distracted lately; it has been hard to even find a moment to sit down and write. Hopefully things are settling down a bit and I can find a few more moments to post more regularly in upcoming days. For now…

Em has been doing water therapy for a couple weeks, she started May 30 – she has only been in the pool 4 times, two more and then she is reevaluated. That is just not enough time to make any progress and I hope that maybe we can do another month in the pool, but, sadly, that has not been our past experience. Last time, after a handful of sessions, she started saying that she was feeling more stable but then it was over. Very frustrating, but I always keep hoping that it will change at some point.

It feels like we are on a merry-go-round – she needs ongoing water therapy but the only access we have to a pool that is warm enough is through therapy. The doctors want her to exercise daily and have PT and so they occasionally order it for her when I ask, but she gets a month and then is done before she even starts to benefit and we all know what she really needs ongoing water therapy… And round we go.

Sometimes it is hard to write because it feels like nothing changes – I feel like I have been saying the same things for more than 2 years now. Logically, I know things have changed and mostly for the better; the improvements are real. But it still feels like we are spinning our wheels and that gets so frustrating. The whole PT/ exercise issue is one that we just go round and round on and never seem to get anywhere.

Anyway, so far, Em isn’t seeing any improvement from therapy but that is no surprise. She is just tired and ‘tireder’ after therapy. The water seems to help her joints be less painful at the moment, but she has the typical roaming pain afterwards; sometimes her hips, sometimes her knees, etc. The one joint that is consistently giving her problems is her big toe. I think we will mention it specifically to the PT when we go for the eval in a couple weeks because, although it sounds silly to complain about, it is an ongoing problem. It is no exaggeration to say that the feet are to the body what a foundation is to a house. Not sure if they can do anything for it, but it is something we need to  address before it gets even worse.

I am planning on posting tomorrow about the Midodrine that Em has been taking. (Maybe by actually stating that I will post again tomorrow, I will feel obliged to do so!)




Comments on: "Catching up" (4)

  1. Water therapy….. my mermaid loves the water but she found the therapy pool’s warm temps to really cause the POTS to kick into high gear. The warm water causes the blood vessels to dilate which causes more pooling. She had a couple of major POTs/NMH crashes after having a wonderful time in the pool. As in, she could hardly walk across the parking lot when we left and was slumped in the front seat on the way home.

    We may go the the little community pool this summer just to get some of that water time. Good old fashioned “natural” water temps. But it’s like Goldilocks. ….. this pool’s too warm, this pool’s too cold. Where is the pool that’s just right?

    Thinking of you,

    • Goldilocks – perfect way to describe it! We were really worried about the 91ish degrees of the therapy pool when she started a couple years ago, but she has generally tolerated it surprisingly well. Probably her worst issue is going from an air conditioned car to 100 degrees outside to room temp, to 91 degrees in the pool, back to room temp then back to 100 outside and then air conditioning. Or, in the winter, cold to warm and back again. She would definitely benefit from a climate controlled world!

      We were members of our local Y and tried to get frequent pool time in, but the temp hovers around 84 and that just way too cold – she ends up with horrific muscle spasms that cause way more pain than she was in in the beginning so that was pointless. And, she can’t tolerate the sun/warm temps to actually swim outside. Not to mention that she can’t actually be in the sun because of some of her meds.

      Oh, if we could only find a pool that was just right and we could get to 3 times a week she would be so much better. But, I am starting to doubt that the ‘baby bear’ pool actually exists!

  2. Thanks for the update! We are dealing dental.. sigh.. and some feet issues(shrinking feet) and the normal.. just when I start to feel stressed to push her further faster, something always breaks and keeps her and I busy.
    Abby said being in the water is great- it is trying to get out and the next three days of aching body,joints and extreme fatigue that have her steer clear of the water(and that most pool chemicals have some sort of corn contamination).
    We just define PT different around here.. helping put away dishes or folding dishtowels are pushing it for her on a good day.. a fine line.
    We have pretty much decided to go after a formal MCAS diagnosis- we cannot seem to get any Dr. to look past the mito and help us make sure we haven’t missed a primary.
    Hope both our girls have a great summer, no colds, lots of rest.
    Our big successes are so small to the rest of the world… last week we found Abby can eat at least one brand of organic raspberries now and she can eat artichoke hearts from freshly boiled organic artichokes- these are huge victories for us. We just try to roll with them. The journey makes us weary sometimes and I forget that we have made good progress when we measure it based on our small worlds-

    • You are right, small victories should be cherished! Sometimes I forget how far Em has come and how very, very blessed we are with that progress. I just get impatient sometimes! It is hard because we know how terribly sick she was but the newer doctors don’t and just want to push her along. I think we just have to try to find that middle road and make sure we aren’t going to fast or too slow.

      I am sure you are so pleased that Abby is finding more foods she can eat and I am sure she is too! Take the good wherever you can find it! Hope you find some answers on the mast cell front. It isn’t easy but you know your kid and have to follow your gut!

      Thanks for the encouragement!

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