Monday, March 17, 2014

Mesmerizing, Migraines, Medicine, and Mystery.

PURIM 2014! The little guy, dressed as a "Minion". Check 'em out- I even think they're cute creatures!

Know what is cool? Now that I have a little start on my book, and feel momentum happening, I decided to step out of my "comfort zone" a bit and get in touch with the contact from the publishing house which, back then, was interested in my [unwritten] book, based on my blog. Our last correspondance was three years ago. So guess what? It is often wroth stepping out of your comfort zone. Not only did she remember me, but she said that she decided not to get in touch with me over the years to see how I'm doing because she didn't want me to feel pressure to write my book, or feel I have to propose a target date. She was very pleased to hear from me. She was also complimentary of the work I sent her I have done on the book (small amount), saying she was "mesmerized" by my voice, and she loves the title. 
(Yes, I do plan to reveal the title soon, but I'm not ready yet. Patience.)

So that is great. I am taking a certain amount of every writing session to go through old blog entries, taking out excerpts that may be useable at a certain point.

What is on the other side of great, when you are reading Sarah's blog?
Ummm, un-great? Well, ya. 

A few days ago (Thursday night and all Friday) I had an INSANE migraine. The really awfulawful kind that keeps me nauseus and throwing up all day. Head pounding, eyes hurting, nauseus... I gotta say, in all my experience with pain, this is up there with one of the worst types I have ever experienced. And I have no medicine that works. I am allergic to an entire family of migraine meds. My throat and lips swelled up about 10 minutes after trying one at the beginning of a migraine (years ago).

The good news is that on March 31st, I have an appointment which I had to wait three months for, with the best neurologist around, who specializes in migraines. Finally, lets pray that help is on the way. All my meds, though, adding something strong enough to handle the migraines... my poor body. I don't want it. (who would?)

I raised the Fentanyl dose about three months ago, because I was experiencing break-through pain. Since raising the dose, though, the pain hasn't improved at all. It's like it's stagnant or something. Maybe this is *it*. The end of what Fentanyl can do with my particular nervous system. Maybe the increase in migraines of late is because of that. WHO KNOWS? Medicine is not in the least bit scientific, and it is all trial and error.

I try, they error.

Another piece of news is that my orthopedic oncologist called me the other day. He said that at this point, they don't recommend a hip replacement. They do recommend fixing the other hip which has the FAI. In the meantime, I have decided on a second opinion with another orthopedist who is the mentor of my orthopedist who has done two of my surgeries. That second opinion date is for March 23rd. I will also get an appointment with my regular orthopedic surgeon, and arrange a surgery date at that point with whoever I feel is better for me, and has a manner, and opinion that I agree with. I mainly wanted one more opinion about hip replacement surgery, and also about the FAI in the right thigh.

Migraines from Fentanyl (?) Fentanyl because of NF.
PVNS in one hip joint,  inflammation of the tumors likely caused by the NF.
FAI in both hip joints, from favoring either leg at different times, from NF.
infections, cellulitis 3x, kidney problems, having endured incredibly hard surgeries,
More surgeries in my future, because of the NF.
And the financial and emotional damage? Let's just not go there now.

This list could grow to many pages. I recently came across the letter I wrote to the surgeon who did the original surgery, while reading my blog. It is a long letter about all the fallout and ramifications of my (and my family's) life because of the NF. I did get to read it to him, face-to-face, through tears, sitting in the hospital cafe once, approx 6 years ago. If I knew then what I know now about ramifications.... I wouldn't be able to sit with him in a cafe at all.

And last, but nobody could ever say least:

NF from... (it'll be in the book.)


  1. You definitely have an assortment of positives and negatives going on. Good to read that you have appointments scheduled and will be able to decide on the hip surgery by the end of March. Sometimes progress comes slowly. Positive energy coming from here.

  2. Good blog and cute pic. They all look like minions just without the glasses.

  3. There was someone talking about a new migraine remedy last week on channel 2 (Reshet?Keshet) morning news programme. Sorry I didn't catch the details but they may be on-line Mako? Somewhere out there there has to be something that works.

    1. *Very* interesting Tzippi. I'm going to have to check into that. That would be nothing less than a miracle if I could have something that can take care if the miganes, it is s debilitating, into the next day as well... ttally worn out. If it turns out that there is something I can take, and it *works*, yeah I think I'd have a party. You're invited. :0)