Long due update!


It’s been quite a while since I’ve had a good chance to blog! Summer’s been busy (probably not in healthy-people standards), but things should be easing up now. That being said I can’t believe how quickly time feels like it’s passing. I will be blogging a bit more about this summer, hopefully soon.

I’ve been having quite a bit of trouble with my hip dislocating and subluxating. It’s becoming a frequent and unpleasant problem now. Right now it’s the worst it’s ever been and I’m feeling a bit lost as to what to do about it. I’ve gotten so used to dealing with these particular problems on my own – I cope with and manage the pain until whatever joint it happens to be goes back into place. With my hip it’s a bit more difficult. The movement required with walking, even with a crutch is painful and when I twist it the wrong way which I unintentionally do it’s agonizing. I could hardly move while I was trying to sleep, and normally I have to switch positions constantly for various pain related issues.

Mom’s off to the store to get me a cane. I’ve been using a crutch for the time being but it’s hard on my shoulder and it doesn’t seem to let me shift the weight in a semi-comfortable way. Maybe a cane will be better. If it is I’m definitely bedazzling it with zebra duct tape. If you’re going to hobble, hobble in style.

Not much of an update, I know. But I’m hoping to pick this up again more regularly now.

Hugs xx

19 thoughts on “Long due update!

  1. Hi Katie!

    I’m back as promised and love your new theme! Not in love with your hip, though. :( I only subluxate having classical EDS, but even though my pain is around a 7, it’s really all upper body for whatever reason. Oh, I feel so awful about your hip because my shoulders/shoulder blades, etc., etc. are such a mess and I always say that if I had to walk on them, I’d be up a creek. You have my sympathies and I love the zebra cane, even though I know you’d much rather be able to walk like everyone else.

    Hugs and glad you’re back (and I’m sort of back)!
    A xo


    • Awe glad you like the theme! I wasn’t too sure about it yet!
      As of right now the hip’s doing really good, I haven’t needed the cane much at all. :) I’ve been practicing with it though so that when I do need it again I can actually use it safely haha. It doesn’t make me feel too coordinated lol

      Ditto with being glad to be back and that you’re back (“sort of”) lol :)


          • Me too! I pull all nighters to try and reset the ol’ clock and within a few days, I’m back to being a bat. I know a few EDSers who are nocturnal and you’re the only MFS/EDS hybrid I know (that sounded awful, but I’m an EDS/KC hybrid), so I’m taking notes. I’ve Dx’d myself with a circadian rhythm disorder called delayed sleep-phase disorder. That wouldn’t be an issue if PT and the docs weren’t on the 9-5 schedule. Ugh! Well, it’s morning so time to go to bed now, What a life! Lol…


            • That’s exactly what I do! If I’m not in the midst of some major insomnia altogether my sleep is completely backwards. I’ve wondered if I have delayed sleep phase disorder as well. I’ve spent so many hours researching and trying to figure out what’s with my sleep. I did have a sleep study appointment made at some point but it was in the midst of some other major health issues and it got canceled and never re-booked.
              Don’t worry the hybrid thing didn’t offend at all lol After all, “technically” we could be classified as mutants with our gene mutations haha


              • Oh, phew! Yes, I’m a mutant and want to live on my own planet! Anyway, I never bothered with a sleep study because I’d have to take my Ambien and what would they find? I don’t get REM sleep, but what can they do about it? What can they do about the DSPD? Sigh. I think it’s not that abnormal with us, not that I understand it. Argh!


  2. I have been wondering how you are. As is with our world I got caught up in my own journey and did not email you. I am glad that you had a busy summer – busy means you are coping. Go well and be careful with the cane Brave Katie.


    • You’ve been in my thoughts, I hope you’re doing alright. I’m hoping to get caught up on my blog reading and award posting asap.
      I definitely do have to be careful with the cane, it’s such an awkward thing to use at first! But I think I’m getting the hang of it now.
      Hugs xx


  3. I use a cane when my hip(s) subluxate, or when my SI joints are bothering me. It helps a lot. It was awkward to get used to at first. Great idea about the zebra duct tape! I’m definitely going to do that! ^..^


    • Thanks for sharing! It’s nice to hear from someone having the same kind of problem. I was feeling a little lost today as to whether I should actually go in and get it checked out this time or just wait and watch.
      Hopefully the duct tape idea looks as good in real life as it does in my head. And as an added plus if anyone asks me about it I can fill them in on it’s connection to EDS. :)


        • Sometimes it’s overwhelming just how much of life it can influence. That’s why I love the saying “I have EDS, but it doesn’t have me” so much, I try to live by it as best I can, sometimes more successfully than others but I’m learning.

          I do love the zebra theme as a symbol of it, it makes me feel more connected to other people in similar situations, and less isolated.


          • I agree! I’m going to be looking out for people wearing/using any zebra print items from now on. I never thought much about it until now! It’s always so nice to talk to someone who actually, truly understands, although that makes me feel bad in a way too because I’m sad other people are goinv through the same pain, frustration and difficulties of everyday life.


  4. Yay. Ms.Katie ((((Hugs)))) a cane ;) very nice. I mean if one needs a walking aid ( I do) then it totally needs to be a reflection of them self. Sorry your in pain :( but so good to hear from you.
    Ps. I have a sweet sword cane.


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