Thursday, June 13, 2013

Did I tell you?

Did I tell you that the orthopedist said to me that the labrum of my left hip (which he fixed a year and a half ago) tore again because I didn't do my physical therapy well enough, or diligently enough?

Did I tell you he also said that if I lose weight the hips would be better? This was after him saying, when I first walked into the room, that I look good, and that it looks like I lost weight. What's the deal with my weight all of a sudden? Good thing that I know my weight is fine, doesn't fluctuate much, and my BMI is in perfect range, or I'd really be getting a complex.

Did I tell you also that the rash on my wrist- which came from wearing the other splints- is starting under this [anti-allergenic] splint, too?

I have to now take the splint off more, to let the skin air out (it is summer in the desert). Less time in splint=slower recovery.

Did I tell you that even though these things seem awful, I am OK?

I should crop these two together.....


  1. I love the way you write! I was getting close to the end feeling some trepidation (what else?...) and then your punchline with your amazing spirit shining through! אין כמוך!

  2. I'd draw a picture of that orthopedist guy and take pleasure in crumpling it into a little ball and bouncing it hard off the walls (preferably landing on a thistle for good measure)

  3. in your pics you look too thin to me...what is this nonsense?

    1. He just can't admit that the surgery he did failed after 6 months. It held well before that, but the fact that it opened up again must have been because I did something wrong. His expertise could never fail.

    2. Caroline- your balled up paper ball is too benign.

    3. Tzippi- again, my fault, not his. I must weigh to much and therefor am putting pressure on the hip. It's not grounded in reality. Remember - this is after he had *just* said that I look like I've lost weight. Dufus.

  4. Well, Baruch Hashem you’re okay!!!!???? Be in touch.

    Lots of hugs,


    It's still at the research stage, but I thought you might find it interesting...


  6. Oh, Sarah. I wish I had answers for you. My heart breaks for you and I wish I could offer some real wisdom. I did say before that I wondered if Gapey should be fixed, to take pressure off other things. Maybe?? Would you walk differently if Gapey were fixed, or not? I don't see you, so I don't know the answer to that. You would know, and I think you answered that for me saying no. So my "doctoring" from Pennsylvania isn't very valid. ;-)

    However, this pain issue reminds me so much of Kayleigh. Of course, I'm thinking about Kayleigh a lot because she and Sheila are here at CHOP. So maybe it's projecting, but could it be?? And if so, what is the answer? Because Kayleigh goes through intense physical therapy all day pushing her through the pain to get to the other side. How could you do that, especially with bad hips? How is that diagnosed, anyway? (I missed that detail from Sheila.)

    I know how much I'm "suffering" from a broken toe. Really? No. Every step hurts, but not like what I imagine you go through. And I know it's just a matter of time to get better (like your wrist, sort of) so I know there's an end coming. I wish you could have that assurance as well.

    Well, dear, dear Sarah. I am praying for you. For hope, help, healing, some understanding of G*d's presence through all this. (Something I struggle with in the hard times.)

    Hugs, Jackie

  7. Honey -

    Just dotting of a quick note back.

    First of all:

    Re: the pain. I think that the NF put you in sensory integration disorder. People have it in different degrees and mostly this term is related for children. But I see LOTS of adults who have it too (including me in some measure). The good news is that there are ways when working with a talented occupational therapist where you can lessen your sensitivities. Can you check this and search it yourself a bit more on the web, to see if this rings a bell with you?

    Love you, keep strong.I believe you!

  8. Crap! That was a miserable thing to have to hear. One thing that occurs to me is, do you have the desire and the resources to go someplace like the Mayo Clinic in Rochester, MN, or to try to get seen someplace like NIH in Bethesda (not sure which institute--Allergy and Infectious diseases, Arthritis and Muscular Diseases, Rare Diseases Program?) or the Nationa Orthopaedic Hospital in Arlington VA? Would your insurance cover it?

    I hope I'm absolutely wrong about this one. But what bothers me about what you wrote is that your doctor sounds like he's just giving up on you, and if that's the case, it simply isn't acceptable. He seems to want to deal (or not deal) with the whole thing by giving you pills. Control the pain and hope it (or the patient?) just goes away. But that's not happening. Your pain is still getting worse, not better, and he doesn't seem willing to deal with the problem that's causing the pain any more. Maybe I'm overreacting to this one, out of sympathy for you or my "ima" desire (or the desire of a friend who loves you) to make things better, maybe this doc really is doing all he can. But it isn't doing any good. Maybe it's all that can be done, but just maybe someone in another facility has different answers. Is it worth finding out?

    Okay, enough running off at the mouth--or at the fingertips!--just had to get this off my chest.
    Love you,

    1. Mardi- the rare diseases unit sounds like it'd be up my alley. I am going to try to find out about it before our planned trip in August. Interesting. We are thinking about coming to Maryland, actually, so it isn't out of the realm of possibility. But what could they actually do to help in a short time we'd be there? I could write to them and see what they think. Thanks for the suggestion!

      And as far as the doctor only being interested in giving me medicine for my pain, that's not actually how it went down.
      He said that he cannot do any more surgery to help the hip problems. He thinks I *use* too much medicine, and he insinuated that I can't be in that much pain, that his other patients with FAI (which is NOT my only hip problem) don't need more than an occasional Advil. That it is my meshugas that I take that much medicine. Just another pompous, arrogant surgeon.