Monday, December 23, 2013

Medical update

I gotta say, things are feeling pretty low these days. I feel the weight of the world on my shoulders.

There are some really heavy things going on, and I am fighting to "keep it together". Some of it is directly related to the NF, and some of it is about one of my children. Neither of these subjects am I at liberty to detail publicy. I do have a person I can talk to, and I will call her, but I'm just saying that things have been so hard since we got back. Jet lag, the kids constant needing chauffeuring, and the other zillion things that they need from me, jet lag, the house being a disaster of clutter and dirt (I can't get a hold of it- too much to deal with), jet lag, sleeping, pain. There are a few big projects that need immediate attention in the house and it is so stressful.

I'll stop wallowing and just do a short medical update:

I got an appointment with the top neurological specialist for migraines, but I have to wait until the end of March. Let's pray I have no more big episodes until I can get some answers and help. At least I have the MRI to bring and start working with.

I was in Tel Aviv again today, making up for the one last week that I flaked on the train schedule.

We are looking into a possible hip transplant. Left side (where the PVNS surgery was, and the FAI surgery after that). It comes down to quality of life, meaning, getting off the pain meds.
With the left hip having it's issues, and the right hip needing FAI surgery, my doc asked me which one hurts more. Which problem should we deal with first.
I chose left. It is usually the more painful side.

I dream of being off pain meds. Maybe I could do birthing work again, or play professionally again. Maybe I could bike ride with my kids, go on long walks, go on wonderful Israeli hikes with the family. Dance at weddings without paying for it for the next three days. Walk, walk, walk. I miss it so much.. There can be wonderful things about hip replacements. I know I told you about the story of being dinner guests in the US, and talking to a man who has his hip transplant for 25+ years. (it's here, about half way down the page)
I also know of a few bad stories. That's true of any intervention. The body is a perfect mechanism if left alone. Once something happens, though, all bets are off. Equilibrium gets further and further away, and we keep reaching further and further to have it back.

My doctor today said we deal with averages, as far as saying how long the prosthetic would last.
That is not so impressive to me, though. As medical issues go, I think I can safely say that I am *not* average, ya know? So do I gamble with transplanting a hip which is a constant source of grueling pain, hoping to win the jackpot of getting off the drugs? Or, should I keep all my original parts until it gets so bad that I have no choice? Or maybe it will never get worse than it is now. Nobody can know these things. Well, there's time. I am not under pressure to do anything quickly. First gather all the opinions.

There first needs to be more doctors meetings; first by the orthopedic oncology team to examine my most recent MRI, then they will have me come for the next meeting with the doctor who does hip replacements there. Apparently he is one of the best. The only possible problem is the skin grafts and scar tissue, because of where it all is located. A short explanation is that an artificial joint needs to incorporate/ integrate with it's bone, tissue, and muscle environment. In my case, the question is whether or not there is enough "good" tissue to allow for a successful implant. In other words, will Gapey accept it.

It'll be a while before a decision is made. A few months, seems to me.

And my last of the medical update?
My new pierced earring holes are red, inflamed, and itchy.

I am allergic to the antibiotic ointment I was told to use. Of *course!* I am allergic to like about 50 types of antibiotics, so this thing much have a few of those.

Too bad you can't see the face I am presently making about that one.

 OK, gonna say goodnight to this day.


  1. sending only good thoughts and hugs your way - may Hashem guide you to choose the path that's best - love you.

  2. Definitely not easy, but it sounds like you're on your way to making decisions about how to proceed.

  3. I know that you will make the best decisions, when the time is right. As for your ears, it could be an allergy not to the antibiotic cream, but to the earrings (that's what happened to me, anyway). But check out another cream first and see how that goes.

    1. Michele , I thought of that possibility, but they are 14 karat gold. I sprung for both of us to have the 14 karat to avoid that issue. For the time being, I'll use some alcohol for a few days, then switch over to aloe.

    2. My body doesn't allow me to wear any type of pierced earrings (even purer than 14 karat) but that's quite rare, I've been told. Alcohol should do the trick.

    3. Well, hopefully in the next few days it'll clear up. I may have to just take out the earrings and let it close up. That would be sad! I guess you experienced that, though. I already have three holes, before I did these extra two, so I shouldn't complain. It's just that I *want* to keep these new two, I think it looks nice! (call me crazy)... too bad that isn't my biggest problem, right?