Thursday, September 8, 2016

No plan, actually.

About that last post... ten year plan.... well, honestly I realize that there can be no plan. There can be no time line. I have days where I am closer to accepting that these changes I had in my "life plan" are here to stay, and days when I feel I am waiting for that past-tense Sarah to come back.

They say that you either get better or you get bitter. I used to be bitter about this all... all of it... the victim mode of how I got NF, all the diseases, pain, and surgeries that followed, everything. I don't think I am bitter at all anymore. And yes, I am better, but not all better, and I am pretty sure I'll never be all better. I have to accept reality, and not keep hoping to return to being the active professional musician and doula I was. It doesn't mean to give up hope, I have not given up hope. And I know I am a trillion times better than I used to be health-wise. Reading back in my journals, especially the CaringBridge ones (which I do often for writing my book), I am constantly *astounded* with how sick I was, for many many months; years, actually, and in so much pain. It is mind boggling.

My yearly follow-up for the PVNS in my left thigh brought with it a question mark the other day in Ihcilov hospital. I have been having knee pain. No injury, just some pain, going upstairs sometimes, and when I do Tai Chi or work out. Left knee. I told my doctor this, because he asked how my other joints are doing. He examined my knee, and then ordered an MRI. Suspicion of PVNS spreading to the knee of the same leg. It does that. PVNS acts like a cancer in that it can regrow new tumors whenever it wants, and in any joint. The difference is that it can't kill you directly. It can destroy a joint to the point of needing amputation if it is not taken care of early, but it doesn't have potential to take over the body. It's an oncological giant-cell tumor disease, but thank Gd not directly deadly.

So, now I have to take care of getting an MRI test for the knee. My personal gut feeling is that it isn't PVNS, but we have to check.

On another front- the headache world tipped the scales yesterday.
I had been nursing a headache for a few days with analgesics. Since the weaning from them, I am "allowed" to take them twice a week, but not two days in a row. I had taken them twice already, a little less than two full days apart, and yesterday a headache developed that I knew I couldn't medicate. Well, yeah, you guessed it. It got worse and worse until I almost exploded. I thought "maybe I should just ride this out, see how long it takes to go away on it's own". But, as the day went on, I was in so much pain, I could barely see, and I was moaning and writhing in my bed. It just kept escalating. It is so frightening. I threw up, too.

I took a cab to the hospital when I just couldn't take the pain anymore.

It took longer than usual, but I did finally get the IV "cocktail" that I need to break the migraine. Thankfully there was a good neurologist on call, and she remembered me from last time. She also agreed to shut off the lights in the room we were in, even though she needed to write on the computer. I so appreciated that.

I am home today, but still with a headache. Not a migraine, but I'm laying low.

I started the new migraine medicine today. I had been avoiding it. The reason I started weaning off the Lamictal (which I am still doing) was to start the medicine which is supposed to help the migraines. I hadn't started the new medicine, though, because I just didn't want to. I don't want more medicines in my body. You all know this has been a long-term goal for me. I hadn't had a really epic migraine since I was in NY a few months ago, so I was thinking maybe I just won't start the new med, and I'll wean off Lamictal, and my body has less medicines in it! Sounded great... until yesterday. Truthfully, it was like a two-day headache already by yesterday because I had been medicating it at home. The fact that it is lingering today makes it a four day headache. Even if this is "only" going to happen every few months, it is horrendous. And there is no telling when it will hit. I keep a journal of my headaches and trigger factors. There is no rhyme or reason any of us can see as to when they come. So, as I continue to wean off the Lamictal, I started the Depilept today. Let's pray this will help. I am sad about starting a new medicine. Side effects... what will happen now? I hate it all so much.

I have to close the computer now, my eyes are bothering me because of the headache.

Hopefully better news next time.


  1. And through it all, you emanate love and care.

  2. I think you are very brave and pulling through situations none of us knows how we would deal with! You need to stop comparing the Sarah that was an the Sarah that is. Just do your best as the Sarah now. Next time you start a headache reach me and maybe Reiki will help before it develops. Good luck with your new meds.

    1. I know you are right, and I am trying to do that- stop comparing. Also to stop wanting to be her. It's so hard, it's one of my biggest challenges.
      Thanks for reminding me about yourReiki- I had forgotten. I'll reach out to you next time I feel one coming on. XO

    2. We all want to be our best most successful selves. Hard to see our special skills fall to the wayside especially when you did such uncommon jobs!!! But things often don't go the way we planned...just feel well.

  3. Oh, my. I know you can get through this and writing about it helps. Sending my love. We're on our way back to Netanya for Shabbat. My Ima just couldn't take being away from her own home without my dad. It got very difficult and stressdul. I thank Hashem every day for my supportive husband as you do yours. Love you so much.