Not light reading

There are times that I don't feel like I have C-PTSD (complex Post traumatic stress disorder), and can feel pretty normal. Then there are the other times. I am finding myself fighting my demons these days. Depression comes in from I-don't-understand-where, and I am down for the count.

We just had a whirlwind of holidays here in the land of Israel, all of which are good, hard, and challenging in equal portions. I also just got a cast off my hand, which was on for three or four weeks... I lost count. It was for a suspicion of a broken thumb, after I had fallen down at my gym. The floor was wet and there was no "wet floor" sign, and I slipped right there. I think the cast was on too long, but the hospital didn't give me an earlier appointment at the orthopedics clinic. Now I am dealing with pain in that hand as well, yay me. I am supposed to do occupational therapy with it, so we'll see how that goes. As of now the hospital hasn't yet given me an appointment to start the OT, but I am back at my job with the jewelry making, and that uses fine motor skills, so that should help.

The holidays we heavy, and good and hard all at once. We hosted many people for big meals over the three weeks, we were also guests by friends, and we also got to visit many friends. Best of all was the visit from my son Dov and his lovely wife and delicious baby! It was all very social. Close to the end of all the holidays, when the title of the holiday has the word "happy" in it (Simchat Torah), I got really down, and whether or not it is related, I got some sort of virus which dragged me down as well (I'm still dealing with that virus or whatever it is).

I got down about the stuff I am used to getting down about, and I couldn't stop it in it's tracks. That "stuff" is that I feel aimless, without motivation, without drive, and I mourn my losses again. Those being the losses of my music career and my doula career, both which were booming when I got NF, when it all came to a halting stop. I admit that I have not touched my horn in over two years, and I am also not advertising for my doula work. I don't feel I can commit to a couple to support them throughout their birth. I don't have it to give these days.

The pain persists. It makes me not want to do anything. I think that is the biggest downer and the reason I have no drive, no motivation. I haven't yet heard from my surgeon in NY about his opinion about the MRI's. It's now officially been a long time. I finally wrote to him today to check on the progress of that. I hope to hear from him soon. But I also know that timing and such things are in Hashem's hands. I'll get his opinion when I am supposed to get it. I am not rushing to do any surgeries any time soon, even though I am in pain. I am just blocked about going ahead with another surgery. I can't do it. I think I need my other hip replaced (three orthopedists have confirmed that), but as I don't have my doctor in NY's opinion yet, I am not going ahead with anything. It is more than that though, I think that even if I had his opinion, I would be blocked about going forth with another surgery. I just don't want to do it. I have had enough. I am at an impasse with myself. More surgery seems insurmountable at this juncture in my life. I have had 14 major surgeries, some of them quite intense, was in an induced coma, and have limped on one side or the other for many years. My body is screwed up. My soul feels screwed up too. I haven't been in any sort of therapy for well over a year, and that's OK with me. I think I've just had it. If it comes to me needing surgery and the choice is no longer a real choice, I will probably need more therapy to wrap my head around it. I have just been through too much. And I miss my life from before NF. It comes down to that, I think. I miss being driven and successful in my careers, and I miss the "me" I used to be before all the medicalization of my life.

I have been having nightmares again also. I don't know what causes them, but they are nasty. Messes up my whole night, and sometimes the day as well. I wake up yelling, and get totally freaked out, and need time awake to decompress. For a week, the week of Succot, my husband was sleeping in our "upstairs sleeping succah" (to be differentiated with our "downstairs eating succah"), and I wasn't, so I was alone in bed. I had a major nightmare while he was outside and had to process it alone. I'm glad the holiday is over and he's back in our bed. The nightmares are from the PTSD of course, the content of them makes that abundantly clear for me. They get me when I'm down. The Cannabis used to be good for deterring them completely (like magic, I am telling you), but I unfortunately got sensitive to it, got headaches every morning, and had to stop taking it.

I hope this new year on the Hebrew calendar will bring me peace of mind and body, although that feels too far to grasp right now. I pray that the pain will chill out without surgery, and that I return to at least one of my previous hobbies/ careers. I'm only 54, it's too early for me to give up. But I can tell you that giving up is my constant shadow.

Medical therapist

This Thursday is the last of the MRI's, this one of my hip/thigh. The last ones were of my lower belly and pelvis. This is the series that my doctor in NY asked to see. I finally got it all approved by the health fund, and it is almost finished. Then, I send them all to the NY doctor, and he'll give me his opinion about what might be going on inside me to cause the pain I have. 

It is the opinion of the orthopedist that all my pain is orthopedic, ie: I need a hip replacement, and that would solve all my pain problems. As I think that is true, I think I do need a left hip replacement, I am not sure if there is a plastic surgery element involved as well, ie: the NY doctor's realm. That is what I am waiting to hear. It'll be at least another month before I get his opinion. I have to send the MRI's by express mail, and then wait for him to go over them and get back to me. Thank Gd there is no emergency here, and I can wait. I can't make a decision without the other opinion anyway.

What has been going on in my head recently is that I am not emotionally ready to do another surgery. My last surgery was my right hip replacement, in 2020. It was a very painful surgery and recovery. VERY painful. Now, it's mostly fine. I do have some issues with it when I walk longer distances, but overall it's good. I just can't wrap my head around yet another surgery. This would make #15 if I get my left hip replaced. I am just fed up with surgeries and recovery, fed up with pain in general. I know that now I am in pain anyway, that I most likely need another surgery to get out of this pain; the physical therapy didn't solve my issues. I am doing it all anyway still, all the physical therapy, and going to the gym three times a week (in a normal week). But I am still in pain.

I *hate* that I am going to have to go through another surgery. HATE IT. I am not at all emotionally ready or willing at this point. I have just been through too much. My social worker thinks I should see a therapist to work through this, because I am going to need surgery soon, and I have to incorporate it into my well-being. There are specific therapists here that deal with medical circumstances. I saw one for a while a long time ago, (hi Shuli!) and she helped me tremendously by using EMDR. I might go back to seeing her, although she is in Jerusalem. I'd like to see someone here in Be'er Sheva, and I have a few recommendations from my psychiatrist who I highly respect and feel good with, but again, I just don't want to DEAL. I wish I had no medical issues at all. But, I do, like it or not. One never gets used to pain. It always sucks.

Last week Robert and I got away on a mini-vacation together to Jerusalem in a fancy hotel. It was SO nice. We did Jerusalem things, like a museum, botanical garden, art and craft fair, and a 3-D historical film with moving chairs ("minheret hazman" for those who know...), Mamilla, etc. It was nice just to get away without any kids and enjoy Jerusalem and each other. I was in pain for not an insignificant time through it all, and that was a drag. I just can't walk distances anymore, it hurts too much. I know I need the hip replacement, and that in the end it will help my quality of life, but in the immediate future, I am not ready to deal with another operation and all the pain that that entails. Also we have to find out from the NY doctor if he thinks there is a plastics element to the pain as well (nerve entrapment, or adhesions or something that I don't yet know is happening...). There is still part of the mesh in my belly, and I don't think anything can be done about that; it is incorporated into the tissue too much to remove. If that is causing the pain, (although the pain does seem to be over my hip), I have to just live with it. Or do a procedure that burns the nerve endings that lead to that pain. It's too much to deal with. But I have to deal with it. But I don't want to. But I have to. But I don't want to.

I feel like a 6 year old kid saying "don't wanna!!" I am just so DONE with difficult surgeries. I am also done with being in pain. Ugh. Up against that proverbial wall. I may go and see that medical therapist to help me deal with all this. I don't think I can do another elective procedure without that.

The Good Fairy with pain?

I played the part of the Good Fairy in a play in third grade, and I had a solo song I had to sing which I stressed over for weeks before the production. I still remember that song! It was about waving your magic wand.... "You just start waving your magic wand, waving your magic wand, wave your wand with me and you'll see everything will be alright!" I right now at this moment have the exact tune running through my head. Some things we never forget.

I'm telling you about this because someone waved a magic wand- maybe my regular doctor- with regards to my MRI. When I first asked for the referral from my health clinic, based on the recommendation of the New York surgeon, the answer I got the next day was that I needed a recommendation from an Israeli surgeon, an American one wouldn't do. I thought 'what a bother, I don't have an Israeli surgeon to ask'. My doctor in the US for a well-deserved vacation, but she told me I can Whatsapp her if I needed anything. So, I did. I told her that they are not accepting the New York recommendation, and can she help me somehow. I don't know, but she may have waved her magic wand, because the very next day I got the approval from the Health fund that they will pay for the MRI, with the recommendation 'as is'. Great. So now I am waiting to hear back from the MRI company to give me a date. It will surely be quite a bit in the future, and I'll have to work on getting it at a closer time. We're getting there.

In the meantime I am continuing with life as best as possible. I'm still doing the gold-smithing jewelry-making every day. We have a lovely workshop that engaged couples come in and we make their rings together with them. We (I) "teach" them what to do with our machines and fire burnishers, and they take part in the making of their rings. Sometimes the man works on the woman's ring, sometimes the opposite, sometimes they work on their own rings. It's a really nice workshop, and I enjoy getting to know new couples a few times a week. I always work it into our conversations somehow that I am also a doula... for their next stage in life after the wedding. :) So if anyone out here in blog land knows of an engaged couple that may be interested in doing this, we are booked months in advance, but you can give them my number or email.

I am still going to the gym three times a week, and feel pretty strong regardless of having pain, thank Gd. I just could do without the pain. I managed to go to an out-of-town party last night; the son of good friends of ours got engaged, mazal tov! That was fun, but I was in a lot of pain by the time I crawled into bed. Then today I had physical therapy and it hurt a lot, and I got some new exercises to do.

We are coming up on the holiday of Shavu'ot. It is the holiday that the Jews, wandering in the desert, came to Mount Sinai and received the Torah. It is also the holiday of dairy, lasagna, cheesecake, Ben and Jerry's ice cream, and....well, I made that part up, but it is famous for eating dairy. It comes this year on the heels of Shabbat going out. So we have a lot of cooking to do tomorrow for Shabbat as well as Shavu'ot. We have staying with us still Robert's brother Larry, and our friend Ayala who just returned from six months in Nepal and India. So, full house again. The Klein hotel is active.

Things are stable in an unstable pain kind of way. I am grateful for what is.

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.


https://thechesedfund.com/cause/restoring-talent-buried-by-pain

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.)

diagnosisNOdiagnosis

I'm losing my mind.

Yesterday I went back to the gastro doctor, and he said again (I saw him two months ago) that he doesn't think I have IBS, no matter what Dr. Ezra said. He ordered more tests; an MRI of the intestines, and a few more stool tests that weren't done.

Then later in the afternoon I went to Jerusalem to see my osteopath who I hadn't seen since last spring. I told him what was going on, and he decided to do accupuncture rather than an osteopathic adjustment like he had always done in the past. Because this problem isn't skeletal like my other problems, this is gut problems. He is well trained in accupuncture, and did a treatment. I'm sure it's going to need a series of treatments to have an effect, but almost needless to say I feel no effect.

Do I have the strength to keep going to Jerusalem for more treatments?

WE DON'T EVEN KNOW WHAT THE PROBLEM IS!!!!!!!!!!!!!!!!!!

I'm in pain constantly (unless I'm sitting comfortably or lying down), and I'm really losing it emotionally.

Everyone has different recommendations for me... the dietary decisions are mind-blowing. I can't do any of them. I literally cannot do any special diets, or make any decisions at all.

I don't think I've ever been more confused in my my life.

The world keeps going on, but I am less and less in it.

How am I going to figure out what is going on?

Now people are trying to convince me that the mesh & clips in my abdomen holding me together may be the culprit. But it can't be taken out without major reconstructive surgery, and muscle transplant. It's about the size of a child-size violin.... not a tiny piece of mesh we are talking about here. And there is nothing there to take it's place, you can't just remove it and expect my intestines to stay inside my body, because they won't. A thin skin graft is not enough to hold my guts in. That would be a whole lotta high risk surgery for unsure results. 

Let's hope the tests the gastro ordered will show up something.

They haven't even passed the approval of the kupat cholim (HMO) yet, so it'll be a while before I actually get them done. An MRI can take sometimes a month or more to get scheduled.

I just have more pain to look forward to. 

I have to finish my translating for the medical documents for the mayo clinic. I don't know if I'll go there, but I should apply for dates anyway.

I'm in such a bad place.

Pain, Destiny, Fiery coals, and other such banalities

Such intense ups and downs have been going on over here.
First of all, I want you to know that Robert & I are on a much better wavelength, and are both working on ourselves at a new level. Thank G-d, we're good.

It's all about faith, and reaching higher to connect with G-d. It's all from G-d, even the pain. It has come to teach me something.

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

Things going on with my pain situation are less stable, though. I have now had three treatments with Dr. S, the new pain doctor, and so far there hasn't been improvement in my symptoms. I'm still quite incapacitated with pain most of the day, unless I am lying down. I do think that my talks with him have helped me to internalize that there is not likely some malignant process hiding inside me. The symptoms just don't add up. He is helping me to realize that this CAN go away, and he believes it definitely will. But since it hasn't yet, I'm not there. I am just feeling a little better emotionally believing that what is happening with this pain is purely mechanical and not -dare I say the word- cancer.

Dr. S has strongly recommended I start therapy with a therapist he knows. She specializes in NLP (neuro-linguistic programming). He feels like it must go hand-in-hand with his treatments as well. So, I met her for the first time the other day. Neuro linguistic programming is a bit like the ideas behind the Dr. John Sarno book "Mind over Back Pain", who's ideas and theories got me out of back pain completely in 1990 when I was out flat on my back with blinding back pain and herniated disks. I have even more herniated disks now (as seen in my hip MRI's), as well as many herniations in my cervical spine in my neck (which is making my swallow have that "click"), yet these herniations are not causing me any pain whatsoever. People with situations like me often go in to surgery for spinal fusions and cervical spine fusions. But I have no pain, go figure. Is it because of what I learned in that book by Dr. Sarno? Maybe.

This NLP therapist told me she walked on fiery coals and it did not hurt or scald her feet at all. That is the power of our mind to overcome pain. She honestly did it.

She wants to teach me how to "dial down the pain" like a volume dial on a radio. I'm open to learning! I am very cautiously optimistic.

My meeting with her was astounding for me. She thinks I'm an amazing person with such tremendous potential and purpose in life. She saw a clear destiny for me, that I am supposed to be a nurse. It may have influenced her when I joined in a conversation she was having before our meeting with a pregnant woman, and I offered to help her with her fears and relaxation techniques during labor. Interestingly it was the second "call" that day to help a pregnant woman who has fears of giving birth. I agreed on both counts to talk to them as much as they need. I love helping pregnant women feel confident. So, the therapist heard this part of the conversation, and perhaps got her notions of me being a medical care-giver from that. But she said she felt it so strongly that I am supposed to go to nursing school and help others the way I help laboring women, and also Sabrina with her awful open wound/fistula problems when her bandage would fail. I can do that- I can be in there with the bodily fluids and whatever- I see only the person beyond what their body is doing.

I think that is how this therapist saw me. She saw the person beyond what my body is doing (and has done). But at the same time that that is so optimistic, I also felt that she didn't hear me- I'm in tremendous pain all my waking hours, unless I can lie down. Be a nurse? Doesn't sound like I can do anything on my feet unless I am released of this pain. I appreciate that she sees a wonderful destiny for my personality, but I'm stuck in MUD. I've been through HELL.

She just kept seeing beyond that, but my life is /not/ beyond that, not yet. I appreciate her vision, but we need to deal in the now reality.

We talked a lot about all my recent grief (even before my father passed away). Losing my mom, then jumping into Sabrina's world and sticking with her until the bitter end. Then the loss in a way of my dreams of eventually adopting Tessa, her daughter. It was a HEAVY year of loss. My father passed away 7 weeks ago, but I already had this pain since September.

Know what's interesting, though?
I went off my migraine meds, right? I'm still off them. I have had a few mini-migraines, but no knock-down-drag-out-blinding-vomiting migraines. I have been able to get rid of them with Excedrin and sleeping pills. That was NEVER the case before. Has this belly pain taken over my unconscious, to make me focus on it rather than the emotional pain of life? That is the theory behind Dr. Sarno's book ("Mind over back pain"), and NLP. It's the idea that often if we have huge emotional things to deal with (emotional pain), our bodies protect us from that by redirecting the pain to the body, causing us to focus on that instead of the emotional grief or trauma. I saw it work with myself in 1990- I did a three-day seminar with Dr. Sarno teaching at NYU, and within a week my back was completely out of pain. It was nothing short of miraculous.

So is the belly pain just misplaced migraines? Isn't that interesting? And if the belly pain goes away, will the migraines return???

~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

I must cautiously report today, after now that I have been out to the mall with Shifra, and down town with Azriel to get his hair cut, I am clearly and undoubtedly in LESS PAIN today.
Last night I came home from the treatment with Dr. S in tremendous pain. I wrote him a very despairing letter. But today... the pain is a notch down. I'm positive. I can breathe easier, and move easier, and I am in less pain today. I am also in complete shock about it.

If this continues, I may just sign up for nursing school.....

Update: More Complications

This is one of the lowest times in my medical history. Two months now... Two months of pain with no improvement, and it seems to be getting worse. I can barely stand for any length of time without tremendous general pain in my abdomen.

I'll cut to the updates:

The gastro doctor who said he'd take on my case- Professor Fich:

He did get back to me, thankfully. He said he looked over my CT (CAT scan), and said that he feels the original evaluation of ulcerative duodenitis is correct. Together with that, HOWEVER, he feels he sees something amiss regarding my stomach wall surgeries. He couldn't be specific, he feels it's the job of a surgeon to evaluate. He saw something not right with the mesh/clips/pins holding things together in my belly where the NF left it's big hole. Where we all call "Gapey".

One of the problems with that is that he never saw my belly before, so he doesn't know what it normally looks like. In a responding email, we asked him if he would be willing to compare this present CT with an earlier one, because he has access to all the CT's in Soroka. He declined to spend more time on it, saying I should go see a surgeon. OK.

I feel that could totally be right, even without him doing a comparison study.
This summer, while dealing with the staph infection from hell (the one that lasted what... 6 months? on my skin graft? --it's gone now- that's another story- I used honey on it!), I felt that the whole mesh inside me was inflamed. I felt all those clips, I felt the entire mesh. It was bugging me all summer. (can you imagine feeling a hernia mesh inside you?) I remember telling Robert that I wish I could have it removed. One of the clips was actually protruding a bit, I thought it was going to make it's way out of the skin graft itself. I kept a bandaid on it, it calmed down. But I wouldn't be surprised if there is some sort of grand inflammation, or adhesions or all of the above, or some option I don't yet know about, is happening in there. I feel a lot of pressure there. What I know is that the pain is mechanical in nature. What I mean is, when I lie down, it goes away. When I start to sit up, it starts to hurt. When I stand up it hurts the most. The more I stand up, the more it hurts. To the point of, if I stand up for 10 minutes or more I am out-of-my-mind with pain. I did that the other day. I decided that I was going to do one task from start to finish. I was going to put up a pot of soup. It's one of the only things I can eat- vegetable soup. I took out the vegetables, washed them, started peeling, chopping, putting in pot, simmering, etc. By the time I sat down, I was in SO MUCH PAIN I COULDN'T EVEN TALK. My daughter was getting an Arabic lesson, and her teacher was at the table. I sat down at the table, their lesson was over. I could not talk. The teacher looked at me, a frightened look in his eye, perhaps matching the look he saw in my eye. He said "breathe"....

On the phone last night with Dorit my Homeopath, she (also a physiotherapist herself) asked me about other positions, testing out the adhesions theory. She suggested hands-and-knees. I did that in bed, and BAM- within about half a minute, I could barely breathe again because of the pain. Yup, her theory was proven. We're not exactly sure what the theory means, but there is some sort of adhesions, or blood vessels that are getting smushed and not letting blood flow properly in certain positions.

It may have all started with that stubborn staph infection on the graft. I knew it was going inside, I felt it. It was only visible from the outside, but it kept oozing, for months. That means it's coming from the inside. I kept trying to tell my doctor, then the ER. They didn't even swab it. Not until it was really far along. When will they LISTEN to me?

So, now I need a surgical consult.
The only surgeon who I would let touch me near that mesh is the one who put the mesh in, eight years ago, Dr. Amir Szold in Tel Aviv. He is a very talented laproscopic surgeon who's name came to us, of course, by Rav Benjamin Fisher at the time. Dr. Szold, however, doesn't have an opening in his schedule until the beginning of December. Weh-weh. Robert called Rav Fisher back. Explained the whole story. Rav Fisher told him that Dr. Szold is away for this week (how does he know these things?), but that Robert should try to call Rav Fisher next Wed or Thursday, and he will try to get us an urgent appointment. Let's hope that works out. In the meantime I'm going to try to get an MRI so we have that for better analysis of the situation. That should keep me busy, just trying to get that.

Emotionally I'm a mess, but that's to be expected. I'm crying every day from sheer frustration. I've really lost so much. Remember when I was just one or two months after NF and I was doing 20 hour births with women? OK, I know that was also extreme, and not always in my best interest, but there was something badass about that, right? Well, maybe not. I mean, I was still in bandages, for Gd's sake. But pain, pain is a thief. It has robbed me these passed two months of so much. And I know that there is more to come. I know that this one is not going down without a fight. This is going to be a tough one. There will be surgery, and not simple surgery, I'm almost sure.

The worst part is that I am letting it rob me of my faith. I am angry at Gd. I mean, why is He picking on me so much? Last Friday night I started talking about Dr Kevorkian... poor Robert had to sweep up the pieces of that mess. Thank Gd for Robert.  I know questioning my faith is really not a good path to go down, for so many reasons. So I try not to. But com'mon... TEN YEARS since I had NF. It's been one thing after another. Ten years ago the doctors were optimistic that I will rehabilitate well after NF; I was young, strong, healthy.
Last night on the phone with Dorit, my homeopath (and long-time medical friend) I asked her how will I rehabilitate after this? So much time in bed, I probably will need surgery, I'm losing so much strength. She said "you're young". But I'm ten years older, and not as healthy anymore. I'm going to have to really work at rehab this time, it won't come easily. I already feel so weak and tired, and drained.

I wanted so much more from life. I still dream of my careers, of who I used to be.
(and I have nightmares of puss coming out of my belly, alone in a strange room, reaching for a water bottle with a parched mouth only to find the bottle empty... terrible nightmares.)

But I have to remember to be happy with what I have. I have what many people will never have... an amazing husband, 4 incredible beautiful children, a home in eretz Yisrael, and incredible friends and loving family all over the world. Thank you all for being my people. Your words are hugs to me.

Unwelcome New Chapter

I'm at the very scary, but not unimaginable point of wondering if this is EVER going to end.
The stomach pain is my constant companion. I have been taking the medicine for 11 days now, and there hasn't been much, if any change in the pain level. If I'm standing or walking around, I'm in pain, and it's a lot. I can't take it. I need to get off my feet for the pain to let up. Sitting helps, lying down helps more. I am rapidly losing strength because of this. My morale is in the dumps. I'm incredibly tired all the time. I wonder if this is it for my quality of life. This is where we've come. If that's the case, man, I'm not sure I want to be around to see it. I can't stand it any more. Sick is no life. I've seen enough. I've seen more than enough.

Yesterday I went to the specialist who Rav Fisher recommended to me. His name is Professor Fich, and he's the head of gastroenterology at Soroka hospital here in Be'er Sheva, where I live. He came highly recommend. I didn't actually have very high expectations, just because I already had a diagnosis, and had been through all the heavy tests, so I didn't expect much else for him to come up with. But I went anyway because I am still in strong pain, and it's really not getting much better. I am hoping I just have to keep being more patient, and this is a slow healing problem.

Anyway, professor Fich was quite respectful of the fact that I am in tremendous pain; not something to be taken for granted. Many doctors do not respect the patients pain, especially a woman's, and especially if it seems inordinate with the diagnosis staring at them in front of their eyes. He had my paperwork in front of him from my recent tests and whatnot. We talked, he examined me. He said that I have had all the tests, there are no other tests to send me for, but what he promised to do is to take on my case. That was a big deal, in my eyes. He is going to start by looking over my CT himself, with his own radiologist expert, and see if anything was missed. He instructed me to get back in touch with him on Sunday, he'll have had enough time to look over my tests by then, and if he has anything to tell me he'll know by then. I'm not expecting anything, honestly, but you never know. I think that for whatever reason ulcerative duodenitis in me is extremely painful, and it's going to be a slower healing process, and that's just how it is, and I have to just deal with it. In a way having the doctor find something else woulnd't be so great, unless it is something simple and heal-able.

This pain, though, it feels like the middle of my body is dying. I don't know how else to describe it. I don't even know what that feels like, although technically that very thing has happened to the middle of my body before, but I was in a coma, so I didn't actually feel it as it happened. Well, that's not fully true, I was in horrific pain when I had NF, but it was like an entire body pain, because, well, I was actually dying. OK, we won't go there. I know though that when I had NF I could barely move anything at all without tremendous pain all over my body. This, now, it's all belly. But wow, what belly pain it is.

And such tremendous fatigue. I feel like I need to sleep all the time, and when I look at myself in the mirror, I see someone with deep dark circles all around her eyes. I don't understand what is happening to me. I look so unwell.

I have a feeling that this chapter in my life is a very big one, and is a turning point, and not for the better. I want to be wrong about that. I want this all to heal and for me to get my energy back, and return to life as I knew it before this episode. I used to want life to return as it was before NF. Now I will be happy just to have the energy levels- and even pain levels- I had before this stomach episode (which is now about six or seven weeks). I just somehow feel that this is a big turning point, and not a good one. I fear in my inner most fears that this almost unlivable pain is my new normal. God Forbid. I have nearly dropped out of outside life, and cannot be present for most of life's joys. This is no way to live life. Please God let me heal from this. I cannot live this way. Not with pain, please God, not with this pain.

(I am doing a combination of Homeopathy, naturapathy, and Western medicine to help myself heal. You need not make suggestions. Thank you.)

Sarah Rachel Bat Tova

still no diagnosis

I've really retreated from life this passed month. I've been mostly either in bed or on the couch, unable to really do much because of the abdominal pain I still have. There are still no answers, all the tests have come up negative so far. That's so far for the non-invasive tests we've done. We know what that means.... invasive tests next up. I really thought we'd have answers by now. I've had many, many meltdowns because of being in pain with no answers and no treatment plan. There was Rosh Hashana, then we were waiting for test results from cultures and whatnot, then there was Yom Kippur, and I'm still suffering. I'm going out of my mind not knowing what is wrong in my body. It hurts So Much, I've never felt anything like this.

My mind has been going to some very dark places. I've been alone a lot these past weeks. I'm in bed a lot... in pain. In bed, or in the bathroom. Things have been so bad. I've been really feeling like this is it... the end is near. I know that sounds melodramatic, but I get to write how I feel here, and I have to get it out. I think I am still somewhat traumatized by my friend Sabrina's passing last year; I feel like, well, I'm next. Here it is.
I tell you, health is EVERYTHING.

I look at people's pictures on Facebook... I have friends who are playing in orchestras, who are able to travel to beautiful places, who are able to go out to dinner with their spouses, who are able to do fun things any ol' day! It is hard to see these pictures while I'm in pain in bed. I miss life. I keep telling myself, if I get to get over this, whatever this is, I'm going to go to a nutritionist and get on a good regimen, I'm going to do yoga with a private teacher in my house (something I've wanted for a long time), get back to my Tai Chi, and do all the things I want to do with my husband, kids, LIVE.

I wish I could draw a line in the sand and just say from HERE, from this line, I don't have to visit any doctors any more.....

OK, fantasy over.

Back to talking about scans and tests about this issue I have here and now...

The only thing that showed up on the CT scan and the ultrasound is the one little gall stone I have. I've had that on all my scans over the years. The pain I have is not characteristic of gall stones, not at all in the areas that gall pain would be. And the blood test shows that my liver is doing well, so it doesn't look like the gall stone is the problem. And of course I'd like to avoid surgery. Intuitively I don't think it's a gall bladder problem... it feels like stomach to me. I'm also having problems swallowing. And my appetite is nearly gone. But I enjoyed the peanut-butter-and-jelly on whole wheat toast that Robert made for me today! That is one of my comfort foods.

We called our "medical rav", Rabbi Benjamin Fisher from the organization "מגן לחולה" ("magen l'choleh", an organization which helps match patients with appropriate doctors, among other amazing things). He has led us to all the right doctors each time I've had serious medical problems in the past years. Many of my past surgeries have been done by surgeons recommended by him, and have gone successfully. So, It was time to call him. I've been sick for too long with no direction, no good gastroenterologist, no diagnosis, and lots of pain. He told us who to go to; and it is the head of gastroenterology in Soroka (the hospital here in Be'er Sheva, one of my least favorite places on earth for so, so many reasons.)

That doctor does see patients privately, but even using Rabbi Fisher's name and my whole story, I couldn't get an appointment with him before the end of October. I took that appointment, and put myself of the waiting list for mid October, when he comes back from his vacation.

In the meantime, I went today to an anonymous Russian gastro doctor, a different one than the one I saw a few weeks ago. I told him that the pain is worse than it was a few weeks ago, that we need to proceed with endoscopy and colonoscopy. He examined me, asked the standard questions, we talked, and he was very sincere and very understanding. He took me very seriously, thank God. He scheduled me to do both procedures at once... this Friday. As in three days from now.

I'll be in "twilight sleep", he said I won't know that the procedures happened. I won't feel them, especially because I am a patient who is in pain, he will make sure I am fully asleep.

I am very nervous, but I am relieved to be getting these tests done soon.
We will at least then have some answers.

Or not?????? There's a scary thought.

I can't do this too much longer

You know, I can handle a lot of stuff. I mean, a lot. You guys read my blog, you know what I am capable of. But piling on a lot of pain, I can't do that too long. I'm out of the game.

I'm in too much pain. This belly problem has not yet been solved. Things have been found, but no decisions have been made. Yes, there is a gall stone, that could be the cause. There is some gynecological stuff going on, but I really don't think that is what is causing all this pain. I see that as "the devil we know"... endometriosis, fibroids, cysts.... it couldn't cause this kind of pain, or loss of appetite. I've known the endometriosis pain for years, I know what it feels like. I know what the cysts feel like. The fibroid is new, but I don't think that is the cause of this pain, I just don't think that's it.

I saw a gastro doctor last week before Rosh Hashana and he wrote a list of a whole bunch of other tests to get done. I'll get to those this week. Most of them tomorrow- blood test, poo, and an upper abdominal ultrasound, also tomorrow. I hope (in a weird way) that we get some answers from that. I can't go on like this with no answers. I'm really functioning at a low level. I'm treading water so long that I completely forgot that I actually love swimming. Soon I'm going to forget how to.

I can get up and get around. But with pain. I got to shul (synagogue) on Rosh Hashana, once, for a few hours, but barely could pray. Too much pain. My prayer book barely got used this holiday. I did make it to our friend's house, and we also did have friends over, and I was around, but not really. One meal we hosted good friends and I had a migraine on top of the belly pain so I wasn't there at all. I missed sharing our traditional Rosh Hashana meal with them. It made me so sad.

Speaking of migraines, lately it seems that my headaches are winning the tug-of-war with the Topomax.... I don't know if that means we'll have to raise to dose or what. Every day now for four or five days I've had some sort of a strong headache. Twice I could call it a migraine, but not Large Scale. For a while there the Topomax was totally winning the tug-of-war. I can't help but wonder if whatever is going on in my belly is connected to headaches as well.....

It's really true what they say that if you don't have your health, not much else matters.

I mean, of course life matters. My family, it all matters intensely. But living in pain 24/7-- THIS level of pain, I didn't sign up for this. I'm used to low level pain, in my hips, my knee, on my skin graft, pain from the mesh- localized, deal with-able. I can't do this too much longer. I don't seem to have much choice, though, do I. I haven't even started the game of trying to see which pills may or may not take it away, because that is a slope that I have lots of experience with.... that could also land me in the hospital with rebound headaches, and my body getting too used to analgesics. Been there, done that. I am just waiting out these waves- tidal waves - often just steady gushes of pain in my belly. Today is the first day that lying down is not fully taking the pain away. NOT GOOD.

It's very lonely.

We just have to keep doing tests and hope we find an answer. And pray that the solution to FIX it is relatively simple.

But knowing me....not much on my journey to health has been clear or simple in the least.

I'm kind of losing my cool about this, though. It's too much pain, for too long.

Really God? More pain?

I walked into the ER on Sunday with unexplained belly pain and loss of appetite which had been going on for a week. I walked out, about 11 hours later, after being poked and prodded, having x-rays and a CT scan done, and a gynecological ultrasound as well, not much closer to an answer to the riddle. A few things showed up, but it just pointed to needing more tests.

Here I am still with the same problem. My appetite is all but gone, and the pain and pressure in my belly really only subsides when I lie down. But we can't live our lives that way... at least I am trying not to. But it's very, very hard.

I can't really explain what it's like to try to incorporate even more pain into my life. I go between saying to myself that this is all temporary to hearing that little voice in my head that says "no, honey, it's going to take a long time until this is worked out... if ever". I am dealing with a *significant* increase in pain here. And it's not as if I wasn't dealing with pain beforehand. With this, too, let us not forget that my knee is still acting up and hurts me constantly, and I have yet to clarify issues with that. Everything takes time, phone calls, waiting for calls back, paperwork, and waiting for appointments that are hard to get.

This is my life.
I lost out on being on the same planet as the working people at age 39. The doctor who I sued for malpractice, however, gets to keep his profession happily, and even throw me a big smile as we pass in the hallway of the hospital as he leads a band of residents he is teaching, Lord save them. "Hi Sarah" pleasantly surprised to see me. I did not respond. I could have said a thing or two to those residents at that moment. He's very lucky I'm not that person.

The community orchestra I had started to volunteer with last spring starts up again this week. I would love nothing more than to be there... but not this week. I can barely lift myself I am so weak, no less my french horn. My degrees and accolades hang on the wall making me long for those days. I am a ghost of that Sarah.

I may need some pain medicine, I don't know how I'm going to get through this if I have to be more active. I want to be more active, I can't let myself lose it. You know the expression "use it or lose it"...that's what I mean. Pain- it makes one "lose it". But you lose other stuff when you take pain medicine. We need to figure out what is wrong. My mind is going to the dark things- I try to stop myself from going there, it's a waste of energy. Unexplained pain is often a path to the dark things... I've seen so much cancer in my life. Many of us have, I know. I just have to keep it together and try to get in to see a gastroenterologist and get tests done. It all takes so much time. Weeks, months.

And I've put in a call to my orthopedic oncologist about my knee, hopefully we will get to the bottom of my knee problem. It may be PVNS (like a cancer, but not deadly, only deadly for the joint itself). I had that in the same leg, in the thigh joint. I hope it's not because that's pretty bad news.

And the infection on my skin graft is about to win the Guinness's Book of World records prize for the longest lived infection that won't go away and doesn't spread, just hangs out there. I went to the plastic surgeon the other day (yes, with the belly pain, in my condition, with Robert driving, dropping me off at the door, parking the car, etc). The surgeon hem'd and haw'd looking things over, pulled at it a bit (owww), and decided that it does need a scar revision procedure. He wants to cut away the whole pocket of infection, about 3-4 cm's, and stitch it straight. It would be local anesthesia, no new grafting, so it sounds OK. About a month recovery. Thankfully we have no date for that yet, and I am in NO rush to do that, as long as the infection isn't budging, it's on a back burner.

I have an ultrasound for my kidneys and urinary tract tomorrow. Nah, that won't be painful in my situation, not at all. :( Who knows, maybe it'll lead so some discovery of what may be going on here. There was some enlargement of the bile duct seen in the CT the other day, and I think I have (or used to have) gall stones, and that would be seen on the ultrasound tomorrow as well, so I don't know if any of that means anything as far as this pain is concerned, but it might.

The "chagim" or "high holy days" are coming up here next week- Rosh Hashana, followed by Yom Kippur and Succot. Very busy times, very important times. Times that I want to be in the synagogue to pray, and to be with my community. I haven't been able to go since I've been back in Israel, I've been too sick. Also with my knee the way it is I don't think I could walk that far. Although I keep thinking about that amazing hike I did in the Poconos in Pennsylvania! I hiked for about 5 hours, did 1,264 steps up and down (the people who keep Bushkill Falls counted, I didnt!), and that was just a month ago. Yeah, my knee was as swollen as a loaf of bread for a week thereafter, but I did it! And I have the tee-shirt to prove it. :) But with this belly problem, no way. I'm having a very hard time getting around. We'll rent a wheel chair for the holidays. That comes with it's own issues for me, but if it means the difference between being cooped up at home or being out, I do need to get out if I can. The question is if I am in too much pain to even get out for that long, even in the wheel chair.

One day at a time.
That's all I can do.
Let's pray for answers and solutions. I just have a sneaking feeling it's going to take a long time. And I am not happy with that feeling. This pain... it's just not OK. But I don't have much choice.

Pain in the USA, 2017

Writing to you from the good 'ol U.S of A, specifically, the Pocono mountains in Pennsylvania.
We've been pretty busy, but also resting a lot. Mostly spending time with many family members, which has been the main goal of this trip, so that's good. We came here to the Poconos today, Sunday, to a beautiful rental house that Robert found on the internet for us for the week. It's near a beautiful waterfall, river, and quaint mountain and country activities. It's our family vacation time.

I wish I could say that it's all peachy keen with me, but it's not really been smooth sailing. Not by a long shot. In fact, I'm quite worried about all the pain I've been having. I took all the antibiotics that I was supposed to take, and they didn't take away the infection on my skin graft. They ripped up my stomach something awful, though. It made for a pretty bad plane ride... I was in that little plane bathroom more than in my seat. Ugh.

So about that infection... I don't know what to make of the whole thing. I am so confused. I went to CVS, and bought a wound dressing of Silver Alginate, which said on the box kills Staph infections. It seems to have really worked. I have been putting little squares of it on the open wound every other day or so, and it is getting smaller and smaller. It's really awesome. But, at the same time, I am having more and more pain in the whole Gapey area, like the entire graft area has been so painful, it has been hard to just walk, or sit for any length of time. Lying down is the only way to remedy the pain. That is *not* good. I have no outer signs of infection, so as I said, I don't know what to make of it. I am, for now, deciding to deal with it when I get back to Israel, unless I see or feel outer signs of infection. If this pain does not go away when I get back home, I have to seriously consider going on a pain medicine again. Not Fentanyl, a different one. I completely don't want to do that, but I cannot live with this level of pain, it's definitely too much. I don't know why it is happening, other than this vacation is just challenging my body too much. If that is the case, it should calm down once I get home after a few weeks. Let's hope that is the case. But all this pain makes me very nervous. I can feel the whole mesh that is behind Gapey; whole thing, and all the clips that hold it on. Not good.

Also, on this trip, and beforehand for about a month before, I have a consistent lower right back pain. I have a gnawing suspision it is a kidney problem. I have had blood tests, like when I was in the ER a few months back, and the reading for kidney function was OK, but the pain is very persistent. I have had Nephrocalcinosis (also known as a type of chronic kidney disease), and haven't had a full kidney work-up in many years, and with this lower right back pain being so consistent, something is wrong. When I get home I'll have a complete kidney work-up done. I am also planning on switching GP's.

And lastly, my knee (left) is consistely swollen. The swelling has not gone down for over a month. We have no idea why. It is also painful, especially with stairs. I have never had knee issues before this, so either it is connected to the staph infection with Gapey, or it could be new PVNS tumors showing up in the knee this time instead of the thigh. I may have to get an MRI and go to my orthopedic oncologists at Ichilov hospital to get that diagnosed.

In short, I'm kind of a mess. I need to be home, but I'm not, and I have to make the best of it. It's not so easy. I can't really enjoy the vacation with all this pain, it really stinks. I'm just taking this day-by-day, sometimes hour-by-hour. It's really not simple.

Someone on my NF group today wrote about the difference between surviving and living. I wrote that with pain levels rising, I'm finding it harder to live, and I'm going into surviving mode. I'd like to choose to live, though, that's for sure.

A non-soothing prose

Upheaval.
Quiet and dark, throwing up in the throes of migraines.
Three days and three nights each... twice, two weeks apart.
No medicines to control them, ride it out.
Ride it out, ride it out.
Feeling that it will Never End.
Desperation.
Quiet and dark, but not peaceful.

A life of discomfort and pain.
The occasional day of fevers and flu-like symptoms.
No answers, ride it out.
Sleep on it, either it will get better or worse, but avoid going to the doctor.
Except sleep... it's as elusive as a day without pain. It just doesn't happen.

Did I say avoid going to doctors?
In the meantime I am driving all over the country to find help.
Yes, I do see doctors, many of them.
Too many. It's exhausting.
I'm searching for relief.

Natural therapies are slow and intangible at this stage.
But I am doing them. Homeopathy.. so far isn't helping.
It's going to take a while, I am patient.
The promise is that my body will learn how to heal itself.
But there is so much damage.
Osteopathy is infrequent, the practitioner of vacation recently.(but I will go to Jerusalem and see him on Wednesday)

Vocal rehabilitation every Sunday morning, also slow, no noticeable progress.
Lots of traveling, lots of hoping.

I am either at a doctor,
or therapist of some sort,
or at home suffering, or exhausted.

Living with pain alters some part of the brain, I'm quite sure.
I take no pain medicines, my body having rejected many of them over these 10 years.
Even when I'm not in pain (I can be in pain but not suffering)
I am down... depressed.
I don't have the answers why, but as I said,
Living with pain alters some part of the brain.

You see me, I look fine, healthy, happy to see you.
That's also true.
Short lived, though.

My oldest son graduated from high school, got his drivers licence.
My other three kids, finished for the year.
Transitions.
I need my quiet, it is challenged now.
More clothes to wash, kitchen with constant crumbs, sandwich toaster always out, tomato sauce splattered all over the stove.
Rice burned at the bottom of my favorite pot.
I want to scream, but I lost my voice.
I lost my scream voice.
I quietly state my standards.

The kids are older, more independent, but in transition.
I'm *that* mother that doesn't control their cell phone/computer usage enough.
Daughter texts for too many hours.
Sons play games endlessly.
I don't have the strength to entertain them otherwise, or to stand up to opposition.

This is life.
This is life after NF... the week that changed EVERYTHING.
Every cell known and unknown to man was changed in and around my life.
I just want to reclaim those cells. I keep trying.
But they are scattered in hospital rooms and hallways.

.

Pain. It'll never end, it's just never going to end.

I find myself needing to *remember* to smile, to purposely uplift the gloom settling around me. Because, I am One Gloomy Me.

I have three friends battling cancer at the moment. Three. That number went up 150% in a few short weeks. I have one friend watching her mother deteriorate from Alzheimer's.

Disease is just one of the suckiest things on the entire planet.

I also just watched my mom deteriorate  and eventually pass away over the course of five years, bedridden. Lots of diseases in her past, not important to document them here.

I almost cannot bear it anymore, the disease, the illnesses, the lives changed forever because of disease. Once a person gets a diagnosis, their entire life's plans change course. Forever.

39 years old. That's how old I was when my dreams came to a screeching halt. Today, resentment is bubbling up to the surface. Resentment is really sadness in disguise.

I heard some beautiful horn playing on YouTube yesterday.... I want to play like that. I *can* play like that, if it weren't for disease. I hear those recordings, and I think to myself "tomorrow, yeah tomorrow, I'm going to pick up my horn and play again". Then disease strikes, and I don't do it. (lump in throat, tears welling) I miss it so much it makes my heart literally hurt. It hurts to listen to music.

In the meantime, thank Gd my kids are off to a good start to the school year. Ya'akov is in his third new school, let's pray this one understands him better. Everyone has their "thing", and they all seem to be adjusting.

Me... not so much.

Remember that surgery that I have been pretty quiet about because it was successful, almost a year ago? The one that fixed my right thigh joint? Well, it's hurting more and more, over the past month or so. It doesn't hurt as much as it did before the surgery last October, but the pain is gradually creeping back. I am still in the process of going off Lamictal, and my experience is that every time I go off a medicine my assorted problem areas flare up. But, the difference here is that Lamictal is not a pain medicine. That doesn't mean it's not effecting my pain, but only time will tell. I am currently on a dosage of 25mg a day, down from 150mg.
I just have a feeling that I'm going to need a hip replacement before that 5-10 year timeline my orthopedist gave me. Sometimes the idea of needing another surgery can put me into such a depression, such depth of despair, it is scary. But the pain... it's ramping up. I used to be able to bend (since I healed from the surgery), and now it's getting harder, more painful. I will not go on pain meds, my body can't take anymore. My soul can't, either. Can't take anymore surgery, pain meds, migraines, all of it.

I'm pissed at life, at Gd, at cancer, at medicines, at the cruelty randomness of disease.

(in my more spiritually grounded days, I would not be angry at Gd, and I would not use the word random. But, here we are. Ride this out with me, will ya?)

There are so many people who say "well, yes, if you do this and this, you will be much better! Or, if you have this or this attitude, you'll see everything around you change! Or, go to **this** special amazing doctor, he cures everyone, you must go to him/her". Or "I can recommend a diet that would help. Do you drink enough? Do you have good sleep habits? You need to go out to work, it'll get you out of the house and your prospective will change." and on and on and on and on.....

I've heard them all. ALL. Many times over. Well-meaning people, healthy people.
People who struggle with chronic illness don't say those things, because we know that there is no magic to getting your life back.

But it's not coming back. This is it. I can look forward to more pain, more surgeries, more migraines.

And my friends with cancer, I can't even go there. I just cry. I scream, also. And I help as much as I can.

I want to go do some "bucket list" things, because life is Too DAMN Short.
Not this year, though, I am in the mourning year for my mom. It's been two months now... Now I only think about her a few hundred times a day instead of 1000.

I'm constantly on the verge of tears.
Loosing my mom, having our house robbed (every day I am missing the things that were stolen), awful effects of weaning from medicines, hospitals, horrific migraines, increasing pain which looks like it's leading to a hip replacement, less than a year from fixing it. Possible PVNS in my knee. Beloved friends suffering. I CAN'T. I just can't. Robert is busy up to his eyeballs with work... three teaching jobs and home editing. He works so hard, partially because I CAN'T. The kids are constantly a handful, I have no air to breathe. I give and give and give, as much as I possibly can, and my tank is emptying out. I need a quiet vacation with my husband, no kids. Probably not so likely in the near future. The "state of the union" is suffering. How could it not?

Gotta end this now, Azriel needs to get picked up. Then a full afternoon of cooking, chopping salads, cleaning up, laundry, driving to and from activities. Oh, and making Turkish coffee and providing cold water for the workers who are painting our house at the moment.

Thank Gd for all the GOOD. But I'm not doing so great.

Withdrawal: MOH (medication-overuse headache)

I was sure I could handle the withdrawal without assistance. I did it with the Fentanyl, how much harder could this be?

Yah, well, it is harder. It's "cold turkey" instead of slowly tapering. That makes a big difference.

Just spent three days in the hospital neurology unit dealing with my horrendous withdrawal headaches.

The second day of no meds was on Shabbat (this past Saturday).
By Saturday night, my pain level was way past 10. It had gotten to 10 at about 4PM that day.
My neurologist said that the hospital could give me an IV "cocktail" to help the withdrawal and the pain if I needed it.

We went into the hospital at 8:30pm.

In the ER, they didn't know what to do for me; I was supposed to be going off over-the-counter medicines, and I was there in terrible pain, they didn't know what they could give me to help. They actually took initiative to call my neurologist at his home, at 10:45 at night.  Dr. Ezra (my neurologist) answered. That is also not to be taken for granted. He told them about me, and what to give me.

I got the "cocktail" IV only at about 11:30. I was in so much pain all I could do was lie in the hospital bed in fetal position and groan. I could barely see straight- my eyes were very effected with this withdrawal. It was hell.

So I was hospitalized at the advice from my neurologist. I couldn't do it alone, afterall.
Sometimes Hashem reminds us that there are things we just cannot do alone. We were not put in this world in a vaccuum; that, part of Tikun Olam (repairing the world) is realizing that people are here to connect and help other people. Ultimately this leads us to strengthen our connection with Gd.

At the hospital they gave me some steroids for the pain and a muscle relaxer medicine. It helped ease the pain a bit, but not a tremendous amount. For the most part I had to just slog through it, praying for Hashem to release me from the pain in my head.

My neurologist is really a gem. I have said it before, and it is only more and more true each time I see him. The morning after my intake, he came to my bed to visit and see how things are going. I said its been hard, but I'm plowing through. He asked me if I am doing any relaxation techniques, the kind I learned from his course on meditation for chronic pain sufferers. I told him I wasn't. At that moment, during busy morning rounds, he invited me to come into his office to do a relaxation session. Right then and there. I got comfortable in his big lounge chair with the leg rest and reclining back. He took my phone and recorded a whole meditation for pain session (in his voice). It took about 15 minutes. He asked me if I have less pain, and I said I didn't, but I am definitely more relaxed. He said to listen to it on "loop" (repeating over and over) to try to help overcome the pain.

Then he carried on with his rounds. Amazing.

He also had a special "protection" assigned to me... the nurses never woke me up to take blood pressure or temperature. After all, I am not sick, I just needed some back-up for a withdrawal. I never got woken up (by nurses or doctors) the whole time I was there. That, I think, is a miracle in and of itself.

I came home on day 5 of withdrawal. The hard part was over, but the headaches still hung around.

Today, the end of day 7, when Dr. Ezra said withdrawal would be finished with, I still have a dull, consistent hum of a headache. I went out with my family to celebrate Israel's 68th birthday, though, thankfully I was well enough to go to that-- our yearly cook-out with friends from all over the country.

My eyes are really effected by this withdrawal. The first two days I had a white light behind my eyes, no matter how dark I made them. I was also seeing strange visions, icons sort of, inside my closed eyes, for days. It was so strange. Now I still have some of that white light effect (kind of nerve-wracking, in a way) when my eyes are closed, and they are still over-sensitive to light. I am looking forward to a headache-free days (I have had one, yesterday), and taking off my sunglasses.

selfie from my hospital bed
Ya'akov calls it "gangsta momma"

What is unknown is what to expect about the migraines which triggered this whole cycle to begin with. I am supposed to start charting them, dates, times, rating of pain on a scale of 1-10. My current instructions are that I can take Excedrin/Advil if I feel a headache coming on (after this initial withdrawal period), but not more than once a day. Also, up to twice a week is OK, but not two days in a row. I see my neurologist again in a few weeks to follow-up, and see what comes next in evaluating the migraines. Probably an MRI first. I haven't ever had scans to evaluate the migraines.

This is all so "one-day-at-a-time".

Did I tell you my right hip (recent surgery, 6 months ago) started acting up also? It hurts these days. It had stopped hurting for like 4 months. I thought I was healed, but now I realize that all those analgesics I was taking were also helping cover that pain. Hopefully when I get back to the gym, and start working out slowly, it will be better. I hope.

As they say in Israel, "פרה פרה" (para-para, literally "cow-cow", like, we'll milk one cow at a time, no matter how many there are. It's a great expression.) Actually Dr. Ezra used an expression taken from Arabic- "שואי שואי" (shway shway) meaning "little-by-little".

I'm getting there.

migraines

For whatever reason, Hashem has decided that I have more work to do regarding pain.
He and I don't share the same opinion on that, though.

While my hip pain, on both sides, is almost completely gone (I never thought the day would come that I could say that), it feel like I just switched one pain for another.

My migraines have gotten so bad, it's almost too much to bear. I sat in a darkened room yesterday evening, crying, my head feeling like it is splitting open. That was day two of the migraine, including all night. And again, all night last night. The only thing that can help me sleep when it hurts this bad is Percocet. It doesn't really do much for the pain (Percocet is a narcotic, which don't work for migraines), but it does take a bit of the edge off, and helps me to be able to settle into sleep. You can imagine I must be *very* desperate, for me to put any narcotic into my body. I also listen to soothing music in earphones when I am trying to sleep with pain.

My migraine medicine (Zomig) does not work *at all* anymore. I can take a pill, not feel an effect, take another an hour later, and still no relief. Completely useless. It *used* to work. My migraines have become immune to it.

They have been getting worse over the past few months. I don't (yet) know why. Yesterday I went to my optometrist to see if my new glasses prescription I got about six weeks ago is a problem. He tested my eyes again. He did find one possible thing that may need to be corrected, but I am supposed to use eye drops three times a day for a week then tell him if that helped. I may need to have my glasses revised, but I am not convinced that the intense migraines are from that.

Today is day three of the headache (except for Saturday daytime, when I didn't have it at all, thankfully- I got to really enjoy our guests! But the Saturday night migraine was *horrific*). Today I called my Tai Chi instructor who also does acupuncture and Shiatsu, and asked if he has experience with migraines. He said yes, and came today to do a treatment. It was interesting, but of course, not magic- you have to do a series of treatments to see results. I'll do another on Wednesday.

I have been trying to reach my neurologist, but he is so hard to reach. I am going to try to catch him in his office like I have done in the past, but I'm no longer sure of his office hours, and his clinic says he's not in until next Wednesday, and it's booked solid, for months. I have an appointment in June, but my problem is Now. He'll probably just prescribe another migraine medicine (a few of which I am already allergic to). I think it is all stemming from the sleeping problems and sleeping pills, but at this point, I have so many migraines, that I am not sure. I'm interested to see if he has a suggestion to help getting off sleeping pills, but probably not a suggestion I want to try (like substituting it for another medicine).

Yesterday after the optometrist, with a raging migraine, I drove a half hour to see the doctor I have been seeing regarding vitamins and supplements... Dr. Litman. We will "tweak" some of my vitamin etc regimen, see if that helps. There is something I've been taking (amino acids) that may be effecting my nervous system in the brain, so I'm going to cut that out. It's all a long process to get healthy.

As someone who has had the flesh eating bacteria understands intimately- it takes one tiny bacteria to take a whole life down in a matter of hours... it takes many many years to build it back up.
Once the body loses it's inner balance of health, it seems as if it will never be the same.
Now it's the migraines and needing to address the sleeping pill problem. It seems just too hard.

Bronchitis... and gapey's opinion of it.

Who knew?

Who knew that me having a bronchitis cough would Hurt. So. Much.

Not hurt my chest... well, that, too, but that's no big deal. Chest muscles always hurt when you cough a lot. Nothing to write home about (or write a blog about).

But *this*... each cough is an experience in spasmodic pain, the likes of which I haven't experienced since the year I had the surgery that put the mesh in Gapey. That was a year of pain. It was the worst surgery I had to endure out of all of them. It was July 2010, and it was a horrifically painful surgery.

So it turns out that coughing, for about five days now, pretty intensively, makes a *lot* of pressure on gapey and the mesh, and I feel like I'm coming apart at the seams. I feel sharp stabbing pains (plural) in my lower left belly (skin grafts) with every cough. It was so bad the other day that I was sure I must have internal bleeding, or one of the pins which holds the mesh down got loose. It hurt that much.

So I went to an urgent care facility, being that I knew I needed an x-ray, and also that my regular doctor wasn't available.

They x-rayed my chest (to make sure my lungs were clear, and they are, BH) and my belly. The surgeon there said that all the pins are present and accounted for. That the pain I am feeling isn't dangerous, it's just pressure. He tried to convince me that the graft and mesh can hold up to the pressure of the coughing.

I hope he's right. I've had many coughs in my life, some really bad bronchitis, but I don't think I've had one this whole time since the mesh surgery. This is a whole new experience for me.

So the doc there gave me a good cough syrup, the goal being that I gotta stop coughing so the graft/mesh can mellow out. The syrup works ~a bit~. Maybe I get a few hours of cough-free time, but mostly the coughing persists, but perhaps less when I take the medicine.

I just have to wait this out. I don't have any fever, and my blood test at the clinic the other day was negative for infection, which is awesome.

We just are hoping that this pain goes away when the cough does. It hurts something fierce. I grasp my belly and double over when I cough. *Not* a pretty sight.

Let's pray that the mesh supporting my belly holds up to all the pressure, and that the damn cough goes away soon!!!!

(...and the rehabilitation of my right thigh surgery three months ago doesn't regress because I haven't done physical therapy or gym in a while.... I try to stretch and do some exercises, but my tolerance for pushing myself is pretty low these days.)

Is it the flu, or something more sinister?

Boing boing boing.... my life on a bungee cord.

Got back in the driver's seat on Saturday night. It was... ok. a little sore using my right leg, but all-n-all, doable. I decided that I'll ease my way back "into the saddle" and take on some of the driving. My doctor said to wait about a month, and it's been about a month now.

So that was a good plan, for a day or so, until it wasn't a good plan.

I still don't really understand what happened, or is still happening, but on Monday, my body took a huge nose-dive. Felt OK in the morning, then a fever developed in the afternoon, with a strong pain in my lower right torso, upper thigh, near the surgical area. I was (and still am pretty sure) that it wasn't exactly the surgery that was the problem, though. If I had an appendix I'd have thought it was that (appendectomy was in 2009). The pain is close, but I thought it was possibly ovary pain.

I had been having stabbing pains for a few days in that area (since Saturday), and when the fever developed, I was sure an infection was taking root. In my life, fever + pain means infection. I've had so many instances of it, I am pretty professional at reading the clues from my body. I get very scared, as if NF, or some other heinous infection, is right around the corner. I call it the infection ghost... but in this case I'm not sure if it's a ghost. That's the thing about ghosts, a part of our primitive brain thinks they may exist. At least, when my kids are scared of things like ghosts, that's my theory.

So, with this fever and pain going on, I decided to go to my doctor. I was trying to decide if I should see a gynecologist or my regular doctor, but that problem was solved when neither of them were in their clinics yesterday afternoon. So then I thought I'd go to a new urgent care clinic here in Be'er Sheva, that is a much better option than the ER at Soroka. I took my son there once and was really impressed. But, since I thought I may need a gynecologist, I called ahead there to see if they have one on board at that clinic, and turns out they don't.

So, after taking all these things into consideration, I decided to go to the emergency women's clinic at Soroka. It is a separate ER specifically for women's issues.

I forgot to say that the fever spiked sometime after my decision to go pick up Shifra; she was out of school early. I drove the car to pick up Shifra, and then [she talked me into] doing an errand with her at the mall. There are so many things that all the kids are asking me to do with them. They are used to having me around a lot, going out at the last minute to get something done, shopping with them. They all want me to shop with them for different needs. I guess a month is a long wait. It's been really good for me not to be running out and doing things all the time, I've actually been grateful for the opportunity to heal. But, I need now to figure out how to balance nothing with everything.

Our family friend who is one of the generous people helping out with the driving actually came to the mall, on foot, to take over the driving. He didn't know I was sick, but just called because he was ready to pick up Shifra (I had totally forgotten to tell him she got out early). I was grateful not to drive, I was feeling very dizzy, disoriented, and dealing with this weird sort of pain. Thankfully the mall isn't so far from my house, and he was so kind and considerate as to come meet us there.

He dropped us off at home, went to get Azriel from school, and with the two kids home, he took me to Soroka.

The long and short of it is that the women's ER doctor didn't find anything wrong with any internal parts. That's good, of course. But it didn't resolve the issue. She wrote on her recommendations that I should go to the regular ER to continue to clarify what may be the problem.

So after hemming and hawing trying to decide if I should just go home, I decided to go to the main ER. I was feeling so awful, I just wanted to be home, but I was still scared that something is going on. And since I was there already, I'd follow through and try to see what is up.

When I got to the main ER, it was a zoo. There were like 50 people in the waiting room, it was loud, smelly, and just a nightmare. I took a number and it was like 30 numbers away from where they were. I know enough about the ER to know that it could be many hours before I was seen. I honestly could not handle it. I just couldn't be there. I was dizzy with fever, in pain, and not prepared to sit in those hard chairs for hours on end. Oh, and I forgot to say, the hospital does not consider anything below 38.2ºf (around 101º celsius) to be a fever. I had 37.9º (around 100c), so I knew also that they wouldn't relate to that as anything abnormal. (did I ever tell you that when I had NF I didn't have a fever?)

Our friend had just found a parking spot for the car, rather far away, but I said we are turning around and going home. I just couldn't go through with being there one more minute. I think I drove him a bit nuts, but still kind and tolerant, he got the car and we left.

I figured that either the night would go fine or it wouldn't. If I was really sick, I'd know it pretty soon, and if it was going to pass, I'd have a decent night's sleep (which would not have happened in the hospital!).

Fortunately the decent night's sleep prevailed (after a few choice medicines to help ease the fever and pain). The next day (today, Tuesday) I called my health clinic to see if I could come in to see my doctor. She was in, but unavailable. Lovely. If I had gone to the clinic in person, I'd just have waited until she could see me. Again, though, I was feeling sick and in pain. Robert had to go to work, and there was no way I was going to drive. Cab is a possibility, or our friends, but I decided just not to go.

The clinic's secretary and I are pretty good friends. It's been many years we've been doing the health clinic dance together... Israelis will know what I am talking about. If you are sick, be friends with your health clinic's secretary. She can make things happen.

So, she did an instant-messaging thing with my doctor while I was on the phone. I asked questions, she wrote the answers, I asked more questions, gave more facts, she sent it to my doctor and read me the responses. Unusual, but useful. In the end my doctor said that if I felt I needed antibiotics, she'd put in a prescription. What I think I really need is  picture of what is going on in the area where it hurts me- an ultrasound or x-ray or something. That will happen if this doesn't go away.

I didn't pick up the antibiotics. The fever was up and down a few times today, just enough to make me feel junky, but a tad better than yesterday. One of the considerations I always have is that I am allergic to so many types of antibiotics, I am afraid to take them for fear that I will get allergic to that one and have less available to me.

So now I am just hanging out, feeling not-so-great, dealing with a weird pain and not knowing exactly what to do, or if I should see anyone about it. So much has happened to me over the past 8 years since NF that either I panic, or I try to ignore it. I am not even sure what "middle ground" is anymore. I think I am taking middle ground at the moment... I'll take the antibiotics if I feel it's necessary, or I'll get better without them. Only time will tell.

I just have to trust my body to tell me what's good and what's too much. I'm sure it'll be pretty soon that I am driving full-time again. I am also acutely aware of making sure that full-time is not quite the same as it used to be. I put in a request to get Shifra a free bus pass to and from school. Right now she has to pay for riding the bus (city bus). The students who get free bus passes live three kilometers or more from the school. We live 2.8 kilometers away, so technically she isn't entitled to one. I got paperwork together to appeal for it, based on my health issues and our bank issues, so we'll see if they grant it to us. Every little bit helps.

Oh, and our dryer died. So it's rainy season and I am hanging a zillion little clothing items on the rack outside, hoping it won't rain and make me dash out to pull the laundry rack in.

Not a large issue in the scheme of life, compared to what is really going on in our world these days, but in my little corner of the world, it's a drag. Every little bit helps, as I said.

Good night. It's all going to be OK. Because it has to be.