Monday, May 7, 2018

The state of The Union

If I had a nickel (or shekel) for every time someone said to me "I wish I could take your pain away"...
well, money wouldn't help these problems anyway.

Nobody can  take my pain away. Dr. F is doing his best, but it hasn't happened yet. I have had days here and there of amazing improvement, but somehow it always goes back to pain. That's where I'm at now. Pain. Abdomen.

But you know what is actually worse than constant pain?
The eroding of a really great relationship. I'm talking about what, in my blog titles I call "the state of the union". My marriage.

I have to write, but without going into too much intimate detail. I just have to write. I have to let others know that illness takes it's toll everywhere and anywhere it can.

It makes relationships unequal. It's been this way now for ELEVEN years. And we've only been married for 20. The first 9 were us working hard, buying our house, having four babies and living extremely sleep-deprived but good lives.

The second half of our marriage, where we are right now, has been insidiously undermined by illness and hardships that most people will never understand, for 11 years. Our kids are all 11 years older. They are all more independent. We've done our best within an almost impossible set of circumstances. We've had a lot of help from our friends (that's putting it mildly... without our friends I can't imagine where we'd be now. I just cannot imagine). Neither of us have much family here, and the family we do have were also very busy with building their lives and raising their kids.

Nobody talks about what happens in a marriage/family when one partner is always (or nearly always) not well. It's an imbalance in huge proportions. Both partners are overwhelmed with their burdens... one in pain or not well (with all the family's needs in mind while they are helpless to effect changes), and the other taking care of the kids, the house, the paperwork, money issues, shopping, driving, and everything in between. My kids started doing all their own laundry at a pretty young age (Azriel is the last holdout with that, he still doesn't do his own, it's time I pushed him to do that. I have wanted to spoil him, or keep him sheltered more from the hardship that is our family. He's my "baby", and I am guilty of spoiling him).

When the ill partner is the female, things are even harder. Men are not natural caretakers, women are. It is well documented that in marriages where the female is the ill partner, the rate of splitting up is much higher than in marriages where the man is the ill partner.

No, Robert & I are not planning on splitting up. Just to put your mind at ease.
But things are really really really really hard. (cue: tears. me. right now. lots and lots in recent days/weeks.)

I can't remember the last time we had a date night. I just haven't felt well in so long. And he stopped thinking of planning them. It's always pain... body pain or headache pain. Or pure exhaustion. Or all three.

We had a Shabbat all alone three weeks ago for the first time probably since we had Dov (almost 20 years ago). Was it awesome? No. Life is not perfect. BY FAR. But we did manage to have it be good somewhere from the middle of Shabbat and on. Havdallah (the end ceremony at the departure of Shabbat) had us dancing romantically together.

Fridays have been awful, though. I often come into Shabbat with deep circles under my eyes from the crying and hardships from Fridays. It's been this way for a long time.
The dark circles under my eyes don't seem to ever vanish.

I need things a certain way. I can't produce it all myself, I don't have the strength to do it all. Over many years I have learned to give up on much of what I thought I needed. I couldn't do it, so it had to be OK not getting done.

But I'm getting better now, and the imbalance is blaring. I'm getting better, but not better enough. I'm getting healthier, but not healthy enough. I absolutely need things a certain way, and it must be unilateral if others in the family don't care about those things. There are lots of mean, nasty things that come out of my mouth, especially on Fridays. Why especially Fridays? Well, often everyone is home, and Shabbat is coming, and it is the culmination of all frustrations from the week. Last week, if we didn't have guests coming to sleep over, I might have left. I certainly wanted to leave. I don't know where I'd go, but I was in a BAD WAY. Even when the guests came, I couldn't greet them, I was in too terrible a state. I was crying for hours and hours. I finally met them, with red-rimmed swollen eyes, apologizing for not being available sooner. I managed to put everything aside to welcome the Shabbat Queen, sing at the table, bless my kids, and honor Shabbat. But immediately after, the sadness came storming in again.

Things are not good. Not good at all. As I said, I'm getting better, but not better enough. I'm thinking that the rest of my life (and I'm only 50) will be this... not quite sick and not quite healthy. I pray that my treatments with Dr. F will bring me beyond that reality, but as of yet I don't know that. I had a treatment yesterday, and, like usual, I am drained, exhausted, and in pain today. A few needles he put in different places yesterday are really hurting... one is very bruised, right under my umbilicus, so when I lean up against a counter top to wash dishes or whatever it hurts. It'll go away, I am used to these things. I hope that he won't unintentionally burst that encapsulated cyst of infection in my abdomen. The infection ghost always haunts me.

I haven't been a very good communicator to Robert. I am closed off, hurt and upset, and feel so distant. He's hurting, too. My life feels like a complete and total mess, failure, useless, and unproductive. And I'm so angry at NF for taking so much from me.

And I can't open up to my husband, there are too many layers of hurt there from years of being forced to be the ill one and not having things taken care of the way I needed them, but didn't have a right to say because I am the ill one and everything falls on his shoulders. It's an impossible catch-22. He couldn't admit (to me) that he feels put-upon because where would that get us? Now I have a little more life, a little more health, and the proverbial poo-poo is hitting the proverbial fan. I don't have a lot of health back, or a lot of life back.

Dr. Frischman & his wife just left to go to the US for an unknown amount of time. Two or three weeks, maybe more. So I'm on my own to keep trying to heal with the Chinese medicines.

And I need other help. Maybe with Robert, maybe without. It'd be better with him, but that is up to him. I haven't had any counseling emotionally for a very long time, and I need it. We need it. Our lives are not normal. But it needs to be someone very experienced, very wise, perceptive, and spiritual for us to be able to relate to them. Our problems are multi-layered, and haven't been taken care of.

It could be that going off my medicines is triggering the recognition of these issues, but they were always there. It's just that now I am feeling it all, the psych medicines aren't numbing my feelings. It could also be that I am in deep mourning for the loss of both my parents over a very short time period. I haven't really talked much about that, but not a day goes by (or actually an hour) that my heart doesn't hurt from those (these?) tremendous losses. Sometimes I feel so alone and cold from such tremendous loss. Sometimes I feel so desolate and broken, it feels hopeless.

Please don't feel sorry for me. I just need to write things how they are. I need to write it for you, and I need to write it for me. And things are really, really hard. That's reality. It would be better if I could open my heart up to Robert. Let's pray for that.

Wednesday, May 2, 2018

Lag B'omer 2018, coma-versary.

I haven't written in a while.
I haven't felt inspired.
The honest truth is that just living day-to-day is a challenge.

Yes, I am getting better... that is no small feat. My abdominal pain, for the most part, is tons better (but not totally healed), and I can do more. I can be on my feet more, and be in life more. Lots of things are getting better; the treatments I am doing with the Doctor of Chinese medicine (Dr. F) are all encompassing, and the medicines themselves are numerous and, I think, working. The treatments are HARD. I am often yelling out in pain, sometimes crying. It's not for sissies, doing this stuff that we have to do to heal my abdomen (and my hips, knees, ankles, it's all a big mess of scar tissue and things out of line because of all the surgeries). I often have quite alarming bruising, and am left quite wrung out the next day. But eventually the pain is lessening. The man knows what he's doing. It just hurts like h*ll. It's real external surgery... with long needles sometimes, extremely strong hands, suction cups, and all sorts of manipulations. I often grab onto the sheets around me, bracing myself with the pain. Sometimes I can try to relax while what he is doing is hurting, and he can accomplish more when I can. He can break up more scar tissue if I can relax... easier said than done.

My headaches persist, unfortunately. We're working on that. Mostly if I decide I can't take it anymore, I take analgesics when possible (only twice a week so I don't get rebound headaches), and my new "toy"-- a vaporizer for my Cannabis helps out as well. Yes, I finally got my licence renewed, and got what I need.
But there have been some pretty massive migraines of late... a few each week.

So, although there is an upward trend that things *are* improving, I am still often very sad, or angry, and hard to be around. Hard to be with myself, too. I'm going through the withdrawal of my pharmaceutical meds, also. I am on four main medicines (the "conventional medicines"- not the Chinese meds), and they are all in various forms of cutting back. So yeah, my mood is going to waver-- a lot. It will even out after all is said and done, but this is a very hard stage. I am happy to be getting off them, it's been a long time coming. And for the most part (if I don't have a headache) I have been sleeping well, on *much less* sleeping medicine than I have taken since I got sick 11 years ago. I have a schedule of when and what to cut. We are doing it wisely, and with precaution, and lots of support. It's a good goal, but a hard journey.

I also seem to have a type of anemia. According to all my blood tests always, finally Dr. F told me the type of anemia I have... it's not classic anemia, my hemoglobin is OK at 12. It's called Pernicious anemia. Intrinsically it is because of the lack of ability for the stomach to absorb vitamin B12. But simply taking B12 isn't the answer (I've tried that before, does nothing). So again, a milti-faceted issue that we are dealing with in my treatments and Chinese medicines which fortify blood. It could be a contributing factor in my constant unrelenting fatigue, and possibly the headaches.

Tonight on the Jewish calendar marks the day, 11 years ago, that I woke from the NF coma. It is one of those Highly Significant Days for me that I will never forget. My eyes opened, I blearily saw Robert standing next to me. I couldn't feel anything in my body, and could barely move my limbs. I couldn't talk because I was on a respirator. It was frightening. The nurse alerted Robert that my eyes are open, that I am waking up. He turned to me, and started crying, and hugging my shoulders. He told me not to try to talk, and not to be scared. The doctors said I had a bad infection but it is under control. He also told me that that was the very minute that was organized by everyone who was on our CaringBridge website to say a chapter of Psalms together, at this very minute. All over the world, friends and loved ones were reciting the same chapter of Psalms, and that was when I woke up. Did you just get chills down your spine?

Robert then told me it was the holiday of Lag B'omer (as it is tonight), which was four days after I had gone in for the exploratory surgery when they found the NF (which itself was 4 days after the original hernia surgery). That was shocking... four days happened in the world that I slept through completely. I had no idea that the whole country [world, actually] was praying for me... one very long Shabbat. I still had no idea of what happened, what bodily damage I would have to contend with, none of it. Just that Robert told me I had an infection, but now I'm out of danger. I didn't feel any pain... I drifted back into my medically induced coma. Next time I woke up I saw my parents walking into the ICU. They were told things were bad and that they should come say goodbye.... what a 12-hour-flight that must have been. My mother threw herself on top of me crying "my baby, my baby". I was awake, they had just taken out my breathing tube. My father immediately started grilling Robert for answers.... what a thing. I have so many memories. They all come flowing back during this time period. My body remembers, my mind remembers. I wrote about other details in my book, which I hope to start up writing again.

I guess what I really want to say is... is... so many things. I want the end of my book to be that I forgive the surgeon for his mistakes (plural). But that's not my reality. I can't forgive him. I want to, but I'm so embittered by what happened to me, which he could have prevented. That just may have to suffice for the end of my book. We'll see when I get there.

Even though my pain situation is improving, I still struggle every day to: get out of bed, to eat properly, to deal with my fatigue on a constant basis, to deal with migraines coming & going and the aftermath there of, I try to do a yoga routine. I take a zillion little pills three times a day and pray they will help my body to have balance, to heal. My abdomen still hurts, my skin graft causes me problems, it's a constant thing. I can't play my music, I can't help birthing women. I lost so much.

I pass a "store for rent" sign near where I live and fantasize about opening an all-your-needs here birthing store.. baby carriers, pre-natal classes, lactation consulting, doula services, breast milk pumps, all of it. I have so much to offer. 74 meters is perfect. But the thought goes right out of my head; I can't be consistent. One day I'm good, the next I'm down with a migraine or horrific pain issues. I have so many dreams. I still get messages about playing in orchestras. Every day that I think "this will be the day I play horn again", something happens. Sometimes it's with one of my kids, but usually it's a problem with me. This week I went to Jerusalem for two treatments... that also eats a lot of time (and money).

My whole life & time is taken up by trying to get healthy, trying to stay in the world. You guys who get to work your careers, or jobs, and have a life that is quite routine... you can't imagine. You can't imagine what this life is like. Constantly not knowing what is around the corner, not knowing if I stay up that extra hour will cause a migraine the next day. Not knowing if I'll be down the next day or up, and for how long can I expect that? My kids don't get a mom who is consistent. The other day I had to shut everyone out for an entire day and night because of the migraine. This happens weekly. It's a crazy life, and yeah, I feel sad about it. I can't come to grips with it, even 11 years later. In the beginning it was even worse- hospitalizations every other month for infections, surgeries on average once a year, but there were years with two or more. Now life is much quieter than that, but I never got it all back. And I don't know if I'll ever really be out of pain. Dr. F is doing everything that can be done, and it's helping in a tremendous way. But my body got hit bad 11 years ago, and with it, my soul also.

It's supposed to be happy that this is the anniversary of when I woke up from the NF coma... in my NF support group it's called a "re-birthday". But it doesn't hold strength and courageous feelings for me like it does for some others. It holds the hard, hard memories, all of them, and the tremendous sadness of loss.

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.

Tuesday, April 3, 2018

It really got to me today.

So this is the kind of day I've had... ending in a nasty migraine, for which I had to take Excedrin + Tylenol (for the third time this week). The magic retreat is over, and I need more. My medical problems are very extensive, and I'm trying to heal, but today-- perhaps because of the difficult withdrawals I am doing from all my medicines (no, not all at once, but this one presently is a bear to wean off of) -- today was awful. The weaning, the arrival of my monthly female visitor, the constant pain, seeing everyone's beautiful vacation pictures on Facebook during Passover vacation now, it's all too much.

This is what I wrote to my NF list today:
I really need support today, guys, I'm miserable. I'm so, so angry at NF for taking so much of my meaningful life from me, almost 11 years ago. I am suffering with constant pain and can't endure this much longer. I don't know if my new doctor can help me.*  
Sometimes I just wanna die. There are too many medical problems to deal with, I can't take it any more. It's Passover vacation and I can't go out and enjoy, I'm in too much friggin pain. My daughter is begging me to go to the beach, and I don't have the strength. I LOVE the beach, and I can't go. I'm miserable and sometimes feel like ending it all.
* (the asterisk at the end of the first paragraph)- You ever heard that joke about the guy who hires a private detective to spy on his wife because he feels she is cheating on him? So, one day he leaves for work as usual, and the private detective is parked near his house ready to take film if there is any action. Suddenly he sees a man drive up and come to the house. The detective turns on his camera and starts snapping pictures. The wife opens the door, they hug (snap picture), and she leaves with him (snap picture).
The private detective follows the car the wife and the unknown man are traveling in. He sees them stop at a hotel, and go in. Lots of pictures snapped. He then sees a light go on in a room a few floors up, and the private detective puts on his telephoto lens. He snaps more pictures. He has pictures of them embracing and undressing. Then the window blinds get closed, and he can no longer get pictures. He reports to the husband all he saw, and shows him the pictures.
The husband says, "see? I need more proof than that!"...................

That is a little bit of where I'm at with that statement of not being sure the doctor I'm seeing (Dr. F) can help me. I hope against all hope that he can, and *he* fully believes without a shadow of a doubt that he can help me, but I need more proof. I'm still in lots of pain. Dr. F says that he believes that for every year one is ill, it'll take about a month of these types of Chinese medicines and treatments to heal you. That means we can't really judge until 11 months of treatments has passed. I've done two months. I've been really unwell for a really long time.
It's easier to fall into a pit than it is to climb out.

I got some really supportive, caring responses from the list-- other NF survivors and/or caretakers of survivors. One was this:
"You have been an inspiration to so many of us throughout our battles and it's ok to have bad days but I'm sure if you read back on some of your past comments and advice you will find your strength again to get through again and again. You are one of the reasons so many of us have come together as family in our own healing ways. I know it's bad right now but deep inside, you know that again you will beat this terrible demon that shows it's ugly self because YOU and ALL of us are some of the strongest WARRIORS and can NOT give up now. There's still too much more to learn and to teach those who are new WARRIORS and caregivers that feel lost. Sarah, thank you for being you!!"
Another like this:
"...I understand that. I can’t believe you have dealt with it for 11 years. You must have a constitution of iron. So hang in there my dear! Sending love and support your way! I hope you feel better soon. ❤️"
To which I responded:
"I actually feel that my constitution is pretty weak at this point in life, but it's been fueled by having 4 kids to take care of. They were babies when I got NF (aged 1.5 to 7). They're big now, my youngest is 12.5, and I have a 15 yo, 18, and 19. But they still need me emotionally, and to a certain extent still physically. *They* are my constitution. I probably would have purposely OD'd myself out of this world long ago if not for them. It's just that I am now in the process of going off my meds, and it can make for some very bad days. My doctor is trying to "detox" my body with these withdrawals. I hope he's right. I'm desperate enough to try anything. But this doctor is very special. I pray he can do what he says he can do, get me out of pain forever."
The person then responded:
"Sarah Kashin Klein you certainly have 4 great reasons to keep on trucking. I hope this doctor can work some magic and make it happen. YOU are a walking miracle. You didn’t make it through NF to give up. You made it through to show it you mean business. I know some days are so rough. You question everything and feel like you are just existing. But you have shown those 4 kids what it is to overcome. Some days it’s hard to get up in the morning. But I’m sure when you look into their beautiful eyes you know exactly why you did. I know sometimes when I’m having a horrible day one of my kids will say something that makes me stop and pause. THAT is why we are here. 😊❤️ "
Anyway, my point is that the NF list is a very special place to be when life is feeling really hard. There are people there who obviously I have never met, but I love them for who they are. We are a family on that list, we understand what we've been through. I'm telling you, *nobody* who hasn't gone through what we've gone through can understand what kind of devastation NF leaves in it's wake. Many have extremely similar stories to mine... undiagnosed (or misdiagnosed, or not taken seriously) for too long, kidney/liver/lung shut down, multiple surgeries, coma, skin grafts, PTSD. So many people who "have been there" where I've been. I'm so grateful for the internet which has brought us all together to support and strengthen each other. That is how I made it through today.

I was so *angry* today... I was cursing everything I was trying to do (mainly lots of food prep while standing up- I sliced my fingers quite a bit in my impatient, pained haste), I even called the dog stupid animal because she was outside barking and that is not allowed here, she immediately looses outside when she starts barking, so I called her in. She's always only loving and sweet and compassionate to me... but this anger I have-- when it rears it's ugly head, it's NASTY to anyone or anything in my tracks. And she (Emma- our dog) was barking-- a noise thing which especially gets on my nerves. She scooted her butt downstairs to be with Robert to get away from me & my tone of voice. Poor sensitive mutt.

Know where most of my anger was directed? To the surgeon who messed up [my original hernia surgery back in 2007]. I wanted to send him a hate email. HATE. Now, most of you know, I am completely not a hateful person at all. But him? I have a special place in my soul that HATES him for what he so carelessly did to my life. It's not good for my soul, I know. I'm working on it. I actually wrote that hate letter about a month ago, as an exercise with a therapist. But I didn't send it. Today, though, I wanted to. I didn't, and won't, don't worry. I'm working on forgiveness. I need it for myself, not for him.

I saw a video of a Holocaust survivor who was a subject of the infamous Dr. Mengele's twin experiments. Her twin died, she survived. She publicly forgave Dr. Mengele for what he did. It doesn't mean she condoned it, but she carries no more hate in her heart towards him. I saw another video of a woman who was jailed, on death row, for a crime she did not commit. Her husband was also jailed for the same crime, and his sentence for death was already carried out by the time the woman got enough evidence and the right lawyer to acquit her of her crime. She got let out of jail, but her husband was already electrocuted, for a crime they/he did not do. Not only that, but at her husband's electrocution, the electric chair malfunctioned, and the man died by going up in flames. It was horrific, you can only imagine. The woman, finally free, went back to the jail to give a motivational speech to the inmates. She explained her gratitude for the connection to G-d she made while in jail, and forgiveness for the system which failed her husband and herself. Can you imagine? And I can't forgive the surgeon? He certainly didn't do anything wrong intentionally. He even apologized a number of times. Not for the right things, but that's his problem. The man considers himself G-d fearing... wears a kipah (yarmulke) all the time. I trusted him. He's from Harvard. We were friends. Now I hate him. HATE. But I'm working on it. One day I hope I can write to you all that I found real forgiveness (not condoning) for him in my soul. But that day was certainly not today.

Tomorrow I have a treatment with Dr. F. It's the first one since the end of the two week retreat. I'm looking forward. I need it badly.

I want to take some space here to express my gratitude to those who were able to contribute to my fund-raiser for these medical treatments. I personally wrote emails (or spoke on the phone with) to those people who I knew, but some were from people I didn't know, and others were simply signed "anonymous". To all of you... I was, and continue to be, so grateful, and very humbled by your show of support. Thank you with all my heart. We almost reached the goal. For anyone who missed it the first time, I will re-post the website here. I encourage anyone to re-post the website to blogs or Facebook/Linked-in pages/wherever public media to spread the word. I am eternally grateful and it is a tremendous help. Even if we go over the amount of the goal of the fund-drive... I am still getting the treatments, and yes they are quite expensive. The funds go right into the Dr.'s account, where it is duly deserved. No middle-man here. Thank you all, truly, with all my heart and [quite imperfect] soul.

With that, I will say goodnight. I am grateful for all of you- each and every one of the readers here- for being with me in this sometimes tremendously painful (physically and emotionally) journey. I know there is joy in these pages, too. We are coming up on my 11th year anniversary of NF. Hard to believe this blog has gone on for that long. The original hernia surgery was two weeks after Passover in 2007.
So much writing. The blog is my pressure valve like on a pressure cooker. Until I write, the pressure cannot be released. And I couldn't keep writing if it weren't for all of you. You all bear a part in saving my life. Thank you.
There will be better times.
There will be better times.
There will be better times.
(those sentences were not done by 'copy/paste'-- I wrote them out individually. I need the practice in my head of that sentence.)

Tuesday, March 27, 2018

Retreat, Day 7

This is *SO* interesting! Amazing. And these treatments and medicines have such intellectual and practical integrity. The medicines are done with muscle testing, the body says what it needs and what it doesn't. Doesn't matter what the patient or practitioner think needs to be given. The body gives so many clues.

For instance: For the past three days, my digestive pulses have been pretty regular and predictable. This morning, however, they were all off. The doctor immediately asked me what I had for breakfast. What Western doctor takes your pulse and then asks what you had for breakfast? So I told him; spelt bread and hummus. I hadn't had spelt bread since Shabbat until this morning. He said, ah, that's it-- I'll bet your sensitive to spelt. Then he takes out his samples of all the 7 grains, and yeast as well. More muscle testing to see if I have sensitivities or allergies. Guess what? The only grain I *am not* sensitive to is barley! Spelt, yeast, wheat, rye... outta there. But the good thing is that there are ways of desensitizing the body if you want to be able to eat these things. So, seeing that Robert bought me a bunch of spelt matzah for Passover, Dr. Frischman said tomorrow he'd desensitize me to spelt. After Pesach we'll do yeast. Now how cool is that? Just by the pulses we made more discoveries.

~ ~ ~ ~ ~ ~ ~ ~ 

Deep into the middle of this intensive two-week treatment plan with Dr. Frischman, we have been often encountering "red-herrings" as we try to solve my pain mystery. What seems to be consistent, though, is an infectious process is going on. Still. Doesn't seem to be responding to the Chinese antibiotics, though, even though my body tested positive for that medicine.

What is also going on is a hint that we got from the results of the MRE. There were a few findings that raised an eyebrow... one such finding is unusual cysts on my right kidney (where I often have back pain). The cysts have some sort of separation, well-defined shape, and the evaluation recommended I follow-up on that with a nephrologist. But that's not likely to be the source of all this abdominal pain. But it is a piece of the puzzle that Chinese medicine can address. I'm not worried about that.

The other finding is a little stranger in nature... an anatomical anomaly. Apparently my cecum (the part which comes between the small and large intestine) is apparently misplaced... and stuck to the back side of my liver. It is supposed to be lower- the appendix hangs off the cecum-- and that is usually lower right abdominal quadrant. In me, however, it's way up high, causing an inverted loop effect in my intestines. Now *that* could be causing the pain. But how would that happen? And the other question is, when I had an appendectomy in 2008, was the appendix and cecum in the right place? Robert actually tried to call the hospital to see if he could get in touch with the surgeon for that surgery, but that surgeon left Israel a while ago. The hospital said they'd try to get Robert his contact info. Of course he's done 6,000 appendectomies since mine, so what are the chances he'd remember mine... but on the other hand, we have the NF in my story (and remarkably visible on my abdomen, of course), so it's possible it may have been slightly more memorable than your average appendectomy to him. Dunno. So far that's a dead end, so we don't know when the cecum shifted positions, but suffice it to say it's not where it's supposed to be.

That can explain why my liver is often not healthy regarding it's pulses. It's got the cecum stuck to the back of it, doing digestive things. It might also explain my pain.
Dr. Frischman is not fazed by this finding, he believes he can manipulate it to break up the adhesions and coax it back into place, not unlike moving a baby in-utero from a breech presentation to head-down. I'm sure he's right. But today was the first time he really went for trying to do that, and WWOOOOWWWW, it hurt like h*ll. I can handle it, though. And it's better than surgery.

Having said that, I have decided to go through with a surgical consult which I lined up a while ago, here in Jerusalem in Hadassa Ein Karem hospital, tomorrow. It is with someone highly recommended. I don't see myself going into surgery any time unless absolutely necessary, but I will get this doctor's opinion on my situation, and I have the MRE results now also. Information from other points of view can sometimes shed light in a different way, and can be useful. Or not. Nothing to lose.

It was interesting to put to the test going through a major migraine here, on Sunday. I hadn't slept enough, and had a difficult Shabbat at home (also with a migraine on Friday), so when I arrived here on Sunday, by afternoon my head was about to spiral out of control. At home, I'd take analgesics, Cannabis, and pray that they work. Here, NO Analgesics. Strict doctor's orders. OK, so the migraine was getting worse and worse, and it got to the point where I'd normally have gone to the hospital if I were home... it was the point of no return, too much pain, I can't take anymore. But I was here, at the Frischman's house, not taking analgesics, and certainly not planning on going to the hospital for steroids. I had to wait my turn for my treatment, he has other patients. But even between patients, and sometimes during other patients, he'd work on me. Either with acupuncture needles, head pressure points, and Chinese medicines. It wasn't working. At one point he put a needle behind my jaw, kind of behind my ear, and it was excruciatingly painful. That was a hint.

"the upside-down machine"
parallel=weightless. It's AMAZING.

(This machine pictured is where I spent hours of the migraine the other night...)

Seems that my jaw is misaligned. All that pulling and rearranging my teeth and the orthodontics when I was a teen was either for nought, or was done wrong. This can be a major contributing factor in my migraines!

Dr. Frischman spent a tremendous amount of time with a rubber glove on, fingers in my mouth. It was excruciating. He literally realigned my jaw, painstakingly, slowly, methodically, in my mouth. I can't believe that happened, who would ever expect that? It was not easy... not only painful for obvious reasons, but also triggering old traumas of the mouth and breathing ability. I told Dr. F about all that, and he walked me through it. He stopped when I gave the sign to stop, continued when I gave my green light. Amazing amazing amazing. Such tremendous respect for the patient, I've never encountered this. And I've encountered A LOT of doctors.

It didn't take away the migraine, but it took it down a significant notch, with no analgesics, cannabis, or hospital. After my intensive treatment Sunday night, I was able to go to sleep with my regular (still half-dose) sleeping meds. I woke at 7am still with the headache right behind my left eye. I turned over and went back to sleep. I slept on and off until NOON, when Dr. F's wife came to wake me so I could get in a treatment. The headache was what I call "remnants" at that point. After the treatment, I ate lunch, then went for a walk in the sun again. After the walk, the headache was completely gone.
It is the first time, I think ever, that I got over a real hardcore migraine without analgesics or a hospital visit. It was with the support and help from Dr. F, his wife's nutritious food, and fresh air. And lots of good, restorative sleep. I sleep very well here. Thank Gd. Tonight I begin the next stage in cutting my sleeping medicine.

There are so many miracles happening here, it would take at least 4 more pages to document it all. It's all just remarkable. I have been feeling energized and with a new feeling of wellness that I haven't experienced in a LONG time. The abdominal pain remains an issue, but it is overall on a healing trend. It's going to take time; it took a long time to get to this situation, it's not going to go away immediately. But the turtle wins the race, right? There are so many issues to address, it's all interrelated. I've been a walking ball of symptoms for so many years, and here we are putting the pieces together. And much of the picture is pointing to a low-level infectious process that has been rearing it's ugly head over the years but never gone away. It may be stemming from the NF, or possibly from the mystery infection I had which led to my c-section birth with Azriel 12 years ago. I think it's from the NF, Dr. F thinks it's from the c-section... doesn't really matter who's right. All the cellulitis episodes, the infected appendix, the Bartholin cyst, and the open small wound on my skin graft last spring which took four months to heal, which lead to finally healing and immediately thereafter this abdominal pain starting up in Spetember. I have a good immune system, which is why it hasn't done more frequent damage, but we believe there is still an infectious process going on, and that is the source of all my ills and pain these past 6 months.

Keep praying, keep hoping. I have strong hope and belief that we are going to get to health. I believe that I will be healthy. Read that again... when was the last time I could write that???

As you can imagine, being sick for almost 11 years has taken a huge financial toll on my family. I've written about that before. These two weeks of intensive treatment are also costing an arm and a leg, so we have decided, with the support of family and friends, to start a fund-raising campaign to help defray the financial burden of these treatments, which, of course, are not covered by insurance. I'm putting the link here in hopes of two things: One that you feel free to please share this link on facebook sites or to friends, or blogs which you feel would be appropriate for this type of fund-raiser, and two, to give us the chance to humbly thank you all from the bottom of my heart for any support you can offer. I've had this blog for 10 years, almost 11... and this is the first time I've ever done this. It's that big, that important, and that necessary. And I have tremendous hope for the first time since NF.

Robert wrote the story for this page:

May everyone have a wonderful holiday of Passover, and Easter!
May this Passover free us all from whatever personal slavery we have been wedged into this year. New hope really can come with springtime, can't it.