Tuesday, July 24, 2012

crazy life

Crazy times.
Summer vacation, everyone home.
Hard to plan outings because of... me. Walking around places is so hard for me- it is very limiting as far as museums, trail hiking, etc. I am trying not to feel guilty for all these issues, but it is hard.
Truth is, I feel extraordinarily guilty... about so many things which stem from my problems. A comment from one family member about preferring life without babysitters can put me into a tailspin of guilt. When I can't do something with my kids because of pain, another wave of guilt.
I have done *a lot* with my kids that other people in my position would not have been able to do, I know that. (is there anyone in the world in my position?) But the times that I can't, I feel bad.

Planning a vacation with someone who can't walk far is quite limiting. But we'll do it. Somehow we always do.

There have been lots of things to write about but I am so exhausted by the end of these days, I am too far gone to write interestingly, or cohesively.
We had a very successful yard sale- that was fun, except for the crazy heat- like 105-6 (43c). The hottest days of the summer, and we had a yard sale. Crazier than that is that people came! We really made something out of nothing. At least it felt that way for us.
I spent a few hard days gathering things from all around the house and pricing them, putting them out, and motivating the kids to be able to part from things they no longer need or use. I worked *really* hard on the yard sale- it was pretty painful, actually, but when I start a project, I trudge on, whether or not I should really be resting. There was one day before the actual sale that Robert came close to forcing me upstairs to rest. I was limping all over the place, like a wounded but determined soldier.

Anyway, there have been many, many afternoons that I was just worn out after doctor's appointments. So, so many doctor's appointments. It's pretty unbelievable. Why so many doctor's appointments? What if I never went again?

Well, for one thing I'd be in lots of pain. Part of the visits are for prescriptions to help the pain. Then there is the time waiting on line at the pharmacies also to fill the prescriptions. Then there are the consultations about how to possibly make my quality of life better. Those have taken lots of time.

Then there are the therapists and life coaches. More time.

It's possible that I'd need those things even if I didn't go through all this stuff, but these meetings now are to help deal with and go on, as a result of all this stuff.

Today I went to Dr. Z, my pain doctor. We are lowering the dose of the Lyrica for the purpose of getting me onto another nerve pain medicine which hopefully will work better. Since the pain is markedly higher since I have lowered the dose of the Lyrica, he suggested we start the new medicine at the same time.

Tomorrow I head to Tel Aviv to my orthopedist for a check-up on the thigh joint. I imagine one of two possible responses to the continues pain in the joint: either live with it, or let's try a different surgery. Neither response is great. I almost feel like not going; it will wear me out, and what can he do for me at this point anyway? But, I'll go. I am good patient. bleh.

At least tomorrow evening we have friends coming over. That will be nice.

Then Thursday I am planning to go to Jerusalem for a meeting with the "medical coach". Every time we meet, I feel closer to getting *over* these traumas. Her techniques work with me. When I retell my stories now, I don't feel so much like I am reliving them. *That* is a huge step for me. It is also a step closer to writing my book; I want to be able to write about the traumatic events from a healthy perspective. Also these coachings- with the medical coach as well as the other life coach- are all in place now for a reason... I want to get into my healthy life again.

And on that note, I started with a new health regimen. I met a remarkable woman who uses all sorts of methods to get you on track with diet. I am taking some vitamins and homeopathy as well as dietary changes in order to try to have more energy. Let's pray on that one!

Speaking of "praying on that"-- well, actually, I could say a lot here about praying on that, couldn't I.
One thing is that I am now questioning myself about the reconstruction surgery. I am scared that it will put me in a  worse position than I am now. It is soooooo scary to me; this surgery has always been scary to me, and as well as I made a decision a few months ago to do it, and my life coach is helping me realize that it is one of my "dreams", so to speak, I keep being on the fence about it. MORE surgeries? Am I crazy? I feel like I have to think another hundred times before I decide. I lost momentum, I think, since after the consults. Maybe it'll start back up again after the consult on August 2nd at Ichilov. Maybe that doctor will have the best technique to offer.

But as I sit here and type, gapey is hurting.
Surgery hurts, too, though. Will taking gapey apart- slowly (over two years)- make my life better? I know we are looking at long run, but wow, it is hard and scary. You can't imagine.

More on the subject of "pray on that" is about my parents.
They are *both* coming home from the nursing home/rehab center in a week.
My mother took her first step-- tentatively, with a walker, with people supporting her from all sides. In my book, * a step is a step*. Please Gd more steps are in her hopeful future.
My father is recovering his walking, also, with his brand new titanium hip. He is taking lots of steps, thank Gd. He is limping, but is cane/walker free, and pain medicine free. He's 81, I'm 44, and I have yet to reach that level of hippy freedom. I am jealous. He has a new hip, and he's done.

Honestly, I have all these *issues*. Mostly having to do with the nerve pain, which is pretty hopeless, from what I know of others who suffer from nerve pain. A new hip would not solve that problem. I am hoping that the new nerve pain medicine regimen starting will soon help. I have pretty much learned that fixing gapey won't solve that problem, so I'm stuck with it. The only thing that fixing gapey will solve is the problem of having gapey. Don't get me wrong- that definitely comes with it's own problems to be solved.

I am exhausted. I am going to Tel Aviv tomorrow to Dr. Rath.
More on that tomorrow.


  1. It is hard to read about all that, I know it is enormous effort to live with so much pain. But it is even worse when you say abot feeling guilt about things you can not do - it is heartbreaking, I know that in your mind you know you do more than average healthy individual, but feelings are different - you see what you want and like to do and can not. Only prayer can do some good in this situatio. Pain medication is so important, I know from mz own experience, when you are in pain you can not even think, and do something very simple and something about what no one healthy pay attention to. Writing a book from our perspective, people who are not healthy will be different because all what we can read about health and disease are books and articles from healthy and for healthy people. All is arranged like we are the same, when you say you have to wait for prescription medication it is something what has to be organised in a different manner that you can get your medication without walking again and waiting and standing.......
    sorry for language, english is foreign language to me.

  2. There are many stories (lawsuits & recalls) of surgical mesh causing excruciating pain. I wonder if this may be a contributing factor for you.

  3. Sarah, I'm going to focus on the first part of your post, because it's something I feel so strongly about: Guilt. While I don't have young kids to consider, I do have some of the same kinds of limitations because of my heart and arthritis, so I can empathize to a large extent. I feel that guilt is an utterly misplaced emotion. It's an emotion that ought to be saved for acting poorly, or for not changing things that you can change. But when you're in a situation that you can't control, guilt is not what you ought to be focusing on. Sadness, or regret that things aren't different is absolutely normal. But if you can't control the situation, rather than wasting your precious time on guilt, wouldn't it be more productive to reconfiguring that time to figure out what you can do and how. For example, if you want to spend time in a museum but can't walk, can you do it using a wheel chair? If you can't hike a trail, can you do a picnic in the park (I love it when the kids help pepare the picnic); you never know what'll come out of the picnic basket!)? I think that with a little planning and using your very special brand of creativity, you can create at least some of the memories you want for the kids--and for the adults--without harming yourself. Trouble is, I know some of how hard this all is for you. Can't imagine how I'd handle it--but in spite of your gilty feelings, I think you're juggling everyting a whole lot better than you think. The kids may grumble and act out sometimes, but remember--they do that because you've provided a safe environment for them to let out their emotions. They still love yu, Robert still loves you, and that love is returned. So if you can, try to pack away the guilt and save it for a time when you deserve it!

    Love, hugs, and many blessings,

  4. I'm looking forward to hearing more from Dr. Rath. I hope you are having a restful sleep and have a good day tomorrow.
    Hugs, Jackie