Monday, March 31, 2014

The winds of change

winds bringing in clouds, sun showing who is brighter.

While thinking in the direction of upcoming surgeries, there are major unsettling thoughts going through my head:

Is courage going through with the surgery, or searching for other ways?

Do I have confidence in my direction?

We never really know what it's gonna take to get us to where we need to be, so we ask ourselves: what is God's plan for me??

I realize that I have control over how my destiny unfolds. That is such a big responsibility, how can I make it small enough for me to internalize?

While doing what I have recently named "Blog Slog", slogging through my almost 7 years of blogging to get excerpts and snippets for my book, I see it *all*. I feel it all. Mostly, I feel God's hand in all these difficult decisions I have had to make. It's like God says "here's my hand, extended to you. I have saved you many times now. Your work is now to extend your own hand to reach mine, and be a partner in your journey. *You* have to make decisions.

Now I have made decisions to have both hips operated on, with the burning hope of returning some of the quality of life I have lost to the meds. And the pain.

So you know how complicated it is to make decisions to have your body operated on, in the hopes of some outcome that nobody can promise you? They (the docs) have a good idea that these broken parts of my thigh joints need to be fixed, and then I can slowly go off of the pain meds- the heavy stuff.

I have to pray really deeply to feel that I am making the right answer.

Later this week I see my orthopedic-oncologist to have a check-up (which always leaves me limping... "yes, that hurts, it always does, so please don't do it so casually!" Of course, I never have he guts to say that even though this is the guy who has gone into my thigh twice to operate on it.)

At this appointment in a few days I will get clear. I know I will. I need to give these surgeries a try. Being on such heavy doses of morphine pain relief is no more the optimal solution. It's what I went for instead of making a decision.

I plan on scheduling the surgeries. But I know he will ask me... which leg first? How do I answer that? They both hurt! They often take turns (but not always- I often get it from both sides). Do the right one first because it never had a surgery, and has less of a chance of infection? Problem with that is then I have to rely on the left one for transfer of weight, and I know for sure that it can't handle overuse. Or the left one, which has been fixed twice, so I can use the un-operated-on right thigh for transfer of weight I'll need after surgery? That will also cause more pain for the right one.

This is me after my most recent surgery, two years ago, at Purim (when we dress up in costumes):

No my best angle, but the point is clear... Superwoman. I can *do* this. Even on crutches.

Oh, and just for update's sake: tomorrow (Monday) I *finally* get to see the top neurologist specialist on migraines. I waited four months for this appointment! I PRAY for answers. Are my horrible migraines from the meds? There seems to be no rhyme or reason. Oh, and I just had another killer one on Shabbat (yesterday- Saturday) which forced me to take cover in my bedroom instead of enjoy our company we had over for lunch! That's what I mean by quality of life. My leg problems do the same thing. I can't walk places- that cuts out a *lot* of family activities, and invitations for Shabbat, when we don't drive.

What I know is that our bodies are interconnected, and one part cannot be treated without considering how all the rest will react. What I also know for sure is that once a person has their health thrown off in a big way, it can be nearly impossible to find balance again.

I used to be a 100% healthy, strong woman with babies at home, working full time in beautiful jobs (demanding in their own ways, as we know). I took care of all of it; I nursed all my babies over a year, cleaned, laundry, cooking, arrange babysitting when I had to go play concerts. It was a busy life, until this insane disease brought me down in a two day time span. BAM. God clearly said "Sarah, stop. You got off cheap this time. Take care of those souls I gave you. You are not even close to ready for more babies. This is the only way you could hear me, I'm sorry. You are always my precious loved one.

Here is a quote from my book:
"Mother these souls. The ones I've already given you, Sarah. Your talents are merely supporting directives. I heard your prayers, I gave you beautiful children. I've saved your life, I've cradled you in my palm. Now is the time for you to reach out your hand to join with mine.My message now is abundantly clear.

OK, God, I'm listening. Ya got my attention. You've had it since I first said it to you, writing it on my blog, in 2008, a half of year after I survived NF. I think that was the point I was in the mental health institution for the PTSD. Boy, was I listening.

~~~~ Now, from musings to mundane~~~~~

After the neurologist tomorrow, I go to my pain Dr., Dr. Z. Haven't seen him in a while. I plan to discuss with him lowering the dose of the patches. Last time I raised it (was it three months ago?), it didn't help the pain *at all*, and just embellished the existing side effects. I will very decidedly tell him I need to lower the dose. Unless he has a really good reason for me not to, I may be starting another teeter-totter of withdrawal. It will bring on the symptoms- aches and pain in the bones, with no fever. Feels very weakening and awful. BTDT. But it only lasts about a week.

Enough to digest for now. For me, too.

My love goes out to each and every one of you who I know are holding my hand through my blog. Without you, part of me could never have bloomed into what it is blooming into.... birthing my book.

PS- I am fishing for book cover ideas. Anyone? I have some ideas, but nothing sits with me yet. I'd love to hear your creative thoughts! I may even use them!l Perhaps some sort of journey over a footbridge, like I have for my doula card logo. Visions of sketches of medical apparatus: walkers, crutches, a person on life support, crossing the multi colored bridge to a woman and her family, walking along a path, which continues on, even onto the back of the book.

I'd love more *different* ideas! Robert jokingly says to put a big- life-size picture of Gapey. Shock value sells books. Hehehe


  1. Thank you for the update Sarah. Hugs to you!

  2. good luck with your migraine had these way before all the other problems (when you were using magnets). Also I am learning-through my surgeries this year that despite them helping I don't seem to be getting back to how I was before the problems started...although 80% better is great and coming through without any complications is a relief I want my old 100% self back and apparently that is too much to be realistic and strive to be as healthy as you can- you deserve a break.

  3. Actually, I like this picture for a cover. The ocean is endless and gives one the feeling of the unkown if setting out on a journey there. The clouds are dark, both representing difficulty while also a source of rain which gives growth, and the streams of sunshine breaking through the clouds, hope and those moments of joy regardless of all the challenges.

    1. Wow, Darlene, that is a beautiful interpretation! When I put this picture on the blog (I took the pic in Ashkelon last year), I wasn't thinking that way. It was just a picture I had taken, in a folder in my computer, that hit me that day. Maybe what you wrote is why!