Thursday, May 5, 2011

Too many issues to deal with.

That vacation, just a week ago, feels so far away. What is it about vacations that makes that happen?

It is one of those times now that I just want to write everything that is going on with me, and make it look like BLLLEEEEHHHH all over the page. Cuz that's how it feels.

Robert suggested today perhaps another doctor's strike (on my side, not theirs). But I said honestly, it's not like I'm going to have my conditions met. It's just a metaphor for saying how fed-up I am with trying to find a doctor who can actually help me feel better.

Neck pain-- still bad. Not *as* bad as when it first started, but bad. And there is also one particular location on my shoulder that is causing pain problems. Not a muscle, a small spot on a bone that hurts. The orthopedist I saw before Pesach said he wants to see an MRI, and to come back to him when I have it. OK then, that'll take a long time. I could go for a faster CT scan, but having the 14th in four years isn't such a great set of odds to be up against.

Thigh pain-- worsening. But I've also been having sleep problems because the neck/shoulder pain wakes me up. I know for a true fact that when I get less sleep than what I need, I have lots more pain. Unfortunately, I need a lot of sleep-- at least 9 hours a night, and 10 is completely normal for me as well. So, less sleep= more pain. My thigh joint has been really unhappy these past few weeks. I presently have no [non-narcotic] pain killers that help that pain which I can take with my kidney problems.

Kidney-- pain comes and goes in the area of the right kidney in the mid/low side part of my back.

Gapey-- *not* happy recently. There seems to be some sort of eczema on the skin graft. It itches like crazy, and none of my special creams help. It is getting raw there from me rubbing/scratching it, and it has been bleeding sometimes. I should go to a dermatologist, but yeah, making appointments and talking to unfamiliar doctors is what I love to do best, as we know.

Low-grade fevers-- present and accounted for. I'd say four to five times a week, late afternoons, I have 37.5 f, which is around 100 c.

I am exhausted a the moment (just fell asleep at the keyboard!). I may call this wonderful diagnostician that was recommended to me a while ago. But the thought of another new doctor is a distasteful thought. But I may just have to do it.


  1. Have been reading your blog for a while now, but first time commenting. Had similar issues with my skin graft(also from NF)was told it was most likely eczema. It ended up being an allergy to the cream I was told to put on it. The dermatologist was able to diagnose the problem with one look. Switching creams has solved the problem. Hopefully your skin graft problems are just as simple to fix. A trip to a dermatologist may be worth it.

  2. Thanks, nf survivor. Thanks also for writing here on my blog.
    I don't use any creams on the graft, almost never. I don't need to take care of it much at all recently,thankfully, until now with this deep rash.
    I'll get to a dermatologist, I just hate going to doctors. You can relate, I am sure of that.
    blessings to you.

  3. Sarah, I think an MRI of the shoulder would help the doctor diagnose your problem. I know it takes forever to get an appointment, but if you make an appointment today, hopefully you'll get the relief you need sooner rather than later.

  4. Hugs, Sarah. I wish I had a magic pill for you to take. :-( My prayers are with you.


  5. 37.5 is not low grade fever.- It is fever. please try to make your appts. and with g-ds help you will get better. refua shlaima.