Monday, April 16, 2018

Embryonic hope

Many of you wrote to me assuring me there will be better days after my last blog post... and... you were all right!

The amazing news: I had one PAIN-FREE day... I mean completely pain free, top to bottom, morning to night. And I was very active that day. I went shopping to three different stores, did a lot of food preparation and cooking, and I kept doing stuff, and I was FINE that whole day. It was really tremendous. I didn't think that would ever be possible in my life again. I was cautiously delirious with a sense of health and well being. I didn't write a blog that day because of the cautious part... I wasn't ready to buy the neon sign yet for my roof top.

The next day I did *even more* than the previous day. Lots of more. And then after doing all that more, I did some stuff in our yard that needed attention. OK, I pushed it too far, and the pain- albeit much less- started seeping back in. Was I testing my limits? Maybe, but I really think it was more like I am just dying to LIVE, and DO, and I got carried away. I paid for that, though. The following day I was immediately in pain upon awakening, and it got stronger throughout that day, the second day after the Perfect Day.

But, I had a perfect day. I thought there would never be a time in my life that I could say that.

Now I know (well, I pray) there will be more of them.

But for the time being, I have more hurdles to jump.

I'm having problems with my right kidney. Dr. F did a treatment last week which included invigorating the blood to go through my kidneys, and it seems to me that it may have been a bit too vigorous, but that's open to interpretation. My right kidney is the one with nephrocalcinosis (actually my medical charts say it's bi-lateral kidney disease, but I never had pain in the left one), and it also has some sort of "unusual" cyst which was reported from the MRE test. Anyway, my right kidney and back right flank hurt the days following the treatment (like hurt a lot). So After speaking with him about it, he made time for me to come on Sunday (yesterday). That treatment helped a lot. It was acupuncture, gentle massage, and a few other things including an entire change in my medicine regime. I left Jerusalem yesterday afternoon in much less pain (and less worry). 
(Thanks, CB, for your driving expertise and conversation!)

It seems that I may have some sort of stomach virus, too, although in the back of my head I wonder if my recent days of diarrhea have anything to do with a kidney infection. Time will tell, and I'm aware of my body and what it's doing. I seem to constantly have the infection ghost by my side. After you've been through NF and a half a dozen episodes of cellulitis and other nasty infections, the infection ghost doesn't leave your side.

After I came back from Jerusalem yesterday I had my first class of rehabilitative yoga. This is hopefully a form of body movement I can do... the Tai Chi is too hard for me- it's all on the feet, and very much belly-strength oriented. I just can't do it these days, I've tried many times, it hurts too much. And I love Tai Chi. I can't do much at a gym, so I decided to try yoga. I did a little research, and found someone who specializes in rehabilitative yoga for people dealing with difficult medical situations, and it is one-on-one. Yesterday was the first meeting, and I found I could do all the exercises I was given. I hope to continue on that path. I need to get some strength back, even though I'm still in pain. Not simple.

Overall I am improving with the direction from Dr. F. He has many modalities, and is extremely knowledgeable and uninhibited by my multi-faceted issues. My belly pain is overall less, thank Gd. Its going to take much more time, but as I keep saying, I am in the right hands. And you know what? He's my only treatment plan... all- I mean ALL- other doctors have turned me away. A few weeks ago I had a consult with one of the top surgeons in Hadassa Ein Karem hospital. I had lined up that visit months ago. It fell on one of the days I was living at the Frischman's for the intensive two weeks, but I went anyway. He listened to my story, he looked at my scans. His words were unbelievable coming from a top surgeon. He said to me "as you were telling me your story, I pictured a much bigger [בלגן was his word] problem before I looked at your CT scans. Your scans look good, comparatively to what it could be. I don't know what is causing your pain, but I have two things to say to you: I wouldn't operate on you at all. I wouldn't even do an exploratory, I wouldn't touch you. And the second thing is that I am telling you not to let anyone operate on you for any reason that's not to save your life. What you have going on in your abdomen is very delicate, and there is lots of scar tissue and adhesions, and it can't be played with. One wrong move and you could be in much more pain, and have much more serious problems for the rest of your life. I have never said this to anyone, but I am telling you- do not do any surgery for any reason other than to save your life."

It was as if his words were coming straight from G-d, not out of his mouth voluntarily. It was so uncharacteristic for a surgeon to say that, and this, from a very famous surgeon. What I heard: "I can't help you. I won't even do an exploratory. I'm sorry you are in pain, but pick up your marbles and go home".

I returned to the Frischman's house that day for my evening treatment.

Also my family doctor has no ideas for me. Nobody does. Only Dr. Frischman is extremely sure beyond the shadow of a doubt that I can fully heal while in his care. So that's my only treatment plan, and please G-d it's a good one. I consider myself fortunate to have been turned away by Western medicine, and fallen into the right hands.

I am doing very well with all the weaning from my pharmaceutical drugs, also. Today I cut back my Cymbalta again, to one dose before the end. When I started with Dr. F, I was taking 120mg of Cymbalta daily. Today I started on 30mg. And I am on half (or even less actually) of my sleeping medicine, and that is also going down. And I am sleeping well. I am so happy to be finally getting off this stuff, it's been a long time coming. I am having withdrawal symptoms, and waiting until they pass until I cut the next dose. I've been here in this withdrawal place many times, as you all know. I can do this, and I want to.

So while I am still having too much abdominal pain regularly, we are working on my whole health. Sometimes still having to put out fires. Like yesterday when I came with the kidney pain. But even that treatment addressed, with the Chinese medicines, many ongoing issues I have, not just the kidney problem. 

I want to play horn again. I will play horn again. And I want to help women have healthy, strong births. I will do that again.

But my future is still insecure... I don't know for sure that I will regain all my health and vitality. I haven't worked for 11 years, I don't have a retirement package. I don't know that I won't need lots of health care in my not-so-old age. I still have four kids to raise and Bar Mitzvah, give weddings, help buy apartments and cars to start them off in life, as my parents and Robert's parents did for us. We pay for private schools and yeshivas, and all the other trimmings of raising kids. I want to be able to help them pay their rent if they want to learn in university while they're married. My future is much more unpredictable than most other people's (although of course nobodies life is sure). If I am going to keep seeing Dr. F, our "safe money" will be eaten up by that. The gas of going to Jerusalem once or twice a week is also extremely expensive- more than twice the prices in America. And what about our future? I need these treatments now to live, to get out of bed every morning. For a while there I couldn't even do that, I was in too much pain. He has already helped me tremendously, but there is a long road ahead of us, of that I'm sure. You all know from reading this blog for years that the medical issues I have are deep and complex. I believe I can heal, but that belief is in it's embryonic stages.

It's for these reasons that we have decided to extend the fund drive. Your contributions have been amazing, and very, very humbling. I have tried to write personally to everyone who left a name on their contribution. And for the anonymous donors, you have helped more than you know. Thank you with all my heart.

We haven't quite made the goal of $5,000 yet, but it's very close. At this point my bill is higher, of course, and Dr. F is worth every penny. Please share the website on your Facebook pages, and other organizations you may know about that could assist. And please know that all contributions are deeply appreciated.

My mission is not only to survive.... I've been in survival mode, putting out fires for these almost 11 years. Now I want to *thrive*. And to quote something I saw on the internet today "to do so with some passion, some compassion, some humor and some style". That's me, at my best. And I think I can reach my best. With the help of G-d.


  1. You are an absolutely amazing woman, a giborah, and it is an absolute privilege to watch you go through this process. I'm in tears reading this.

  2. Cleans your body of toxins, too. You've recently followed some of the advice I've shared since we met, and it's working. Do the cleanses, too, under Dr F's supervision. Your body will be rejuvenated, acting and looking younger than it is. Then you'll be ready for the next stage, and it's whomping good fun. You body will soar will improved health.

  3. So happy to hear the good news about the pain level subsiding. Here's to mamy more positive posts in the future