Tuesday, January 9, 2018

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.....

Saturday, December 30, 2017

State of the Union

We don't have a house cleaner..... and we have a 10+1/2 room, 3+1/2 bathroom house.
It has always been a point of contention between Robert & I, me wanting a cleaner and him against it. We have had a few through the years, but two of them we had to fire for different reasons. Then we had the big robbery a year and a half ago, and hiring a cleaner felt too risky.

But I can hardly do ANYTHING these days. I'm telling you, any time on my feet is time in hard pain. I cannot keep up with the cleaning. And I have high standards.

The other day I just got so fed up with the grime in the kitchen I started cleaning. In complete agonizing pain. This was after I had blown up at Robert for not keeping the computer room neat and clean. I was just FED UP with the dirt. So I cleaned. And I cleaned. And it hurt so much, on a scale of 1 to 10 I was way off the scale. And I was red angry inside. I was feeling a victim of Robert not wanting to get a cleaner, and him not cleaning (by my standards). Now I have set the stage for you-- be prepared.

"I hate you for not getting a cleaning person" yelled LOUD by me with all my pent up anger and pain.
It got worse. I was on a diatribe. A tirade. I said some very cruel things, he came back with not such nice things himself.

We hardly ever fight, but this was so bad. Thank Gd the kids weren't home, because I didn't hold back. Oh, it was so, so, so bad. The worst fight in many many years, if maybe ever. (this being just a few weeks after our 20th wedding anniversary).

The rest of the day and the next day I couldn't talk to him, the anger not abated. He had already agreed to getting a cleaner, but I was too far gone to let things drop.

Now, what happens to me when this anger happens is that I usually turn it in on myself at some point, and the anger turns to tears. I haven't seen this anger in so, so long, but it's still inside me.

The next day (Wednesday night) I became suicidal. Believe it or not, you read that right. I also hadn't seen that "face" in a long, long time (since my bad PTSD days), but I started to convince myself that life is no longer worth living. I am in too much pain, and I can't live this way. The fight with Robert tore me up to my core, and the pain.......... the pain........ it's just too much to handle.

The anger was also at the surgeon who messed up and caused the NF. I wanted to spit in his face.

I have all the medicines necessary to do myself in pretty quickly (more than enough). Drink it down with whatever is in our abundant liquor cabinet, and there was my plan. I had a plan. That is a scary place to be. But at the time I wasn't scared, I was convinced life is just not worth living anymore. The only thing that stopped me is seeing my children's faces in my head, and what it would do to them. I didn't want to ruin their lives forever, traumatize them, devastate them. I couldn't do it because of them. Again, like so many times in this blog, I will say, thank Gd for my kids.

I reached out to my virtual friends on the NF list. I texted to my team, and I heard back from everyone, encouraging me to live, and just staying with me on that chat. I told them about the fight, and that I was suicidal. They helped me. I cried myself to sleep.

Somehow the next day I also couldn't face Robert. It was very hard for me to drop the anger. I was too scared to be vulnerable. That was Thursday. Thursday's are his day off, and I hid away from the family the whole day. I just stayed up in my room and he took over.
Thursday evening he took the kids out to the mall for the shopping they needed. That was when I had a long talk with a friend from the US-- a long time friend who has helped me out of very bad situations before. I had to hack into an old email account that had become defunct (and I forgot the password) to get his phone number, it had been 3 or 4 years since I spoke with him. I called, and heard his voice on the other end of the phone, and was instantly relieved. He was quite surprised, of course, but gave me all the time I needed. Then gave me all the support I needed. I believe Hashem (G-d) guided me with that call. Because after I got off the phone with him, Robert came back from the mall with the kids, and I was able to apologize. We both melted into each other's arms and cried. Both of us. Cried.

That fight was the pain screaming. And my grief... remember I just lost my Dad? Just a little over a month ago. Well, I loved him a real lot. I loved him so much, and I couldn't experience the grief because I am in so much physical pain. But I miss my father so much, that hurts me in my heart.
(But I realize I finally feel freer to write exactly what I need to write because I am no longer worried about getting him too and upset by reading my blogs.)

It was all the pain and the grief talking. Yelling. Grief has to get out. So many tears were shed this week, if God saved them, Israel would have no more drought.

I'm in a bad way. Like, really bad way.
But the state of the union made it through yet another horrible crisis.
And I have my friends to thank for pulling me through it.
And Robert to thank for sticking by my side no matter what. It was I who almost left, not him.

I am going to see the new doctor again tomorrow- Dr. S. I am hanging my hopes on him that he can help me out of this pain. But part of me still thinks we are missing something dark and bad inside me.

Tuesday, December 26, 2017

The new doctor.... optimism? I'm trying.

I'm beginning to start the awful and impossible mission of relating to this intractable pain as something that is not going away. Because it's not.

The obgyn Dr. Mashiach said that it is clear to him that the pain is not from the fibroids. He wished he could tell me that he can fix me, but he sat at his desk and said he can't help.

Nobody knows what the problem is.
It's possible a nerve entrapment syndrome is what is happening. Just Google "abdominal cutaneous nerve entrapment syndrome" and you will see what that is. All the articles give ways of diagnosing the problem, and treatments. The treatments usually involve some sort of medicinal nerve block injected into the nerve/s involved.

It could also be a problems with adhesions. Adhesions are internal tissues that, because of surgeries and inflammation, cause organs to stick together and not allow for free movement of tissue, thus causing pain.

I started seeing a doctor who is an MD, and is involved in osteopathy as well, and has devoted much of his practice to the study of pain, neuropathy, and what is called "functional medicine". He integrates mind/body to heal. He thinks he can help me. I had one treatment, and although it didn't help the pain, I am willing to give it more time. He is using osteopathy and gentle massage to loosen the adhesions. But we're not sure if that is the problem. It likely is part of the problem, because adhesions form where there were surgeries, often abdominal, but there may be nerve entrapment also.

Both these disorders are treatable, but it takes a skilled practitioner to diagnose the nerve entrapment syndrome. And whether or not it can be treated without injections remains to be seen.

This doctor is more optimistic than I am, but he is the first doctor who is convinced he can help me. So I'll keep going and see how things go. He thinks I can get my life back. I hope he's right.

The more this goes on, though, the more depressed I am getting. I honestly feel my life is being taken away from me by this problem. (as if my life wasn't by and large taken from me already when I had to give up my careers). Having long-term pain is really really bad for the psyche. It makes me not want to get out of bed. Like ever. If it weren't for my kids needing me I probably would stay lying down somewhere all day because that is the only position I don't have pain. Yesterday I did a lot, and I was in pain constantly. I went with Shifra do the mall to get some errands done, picked up Azriel from school, made a big salad, tuna melts, and then a big pot of soup for the kids to have while I went out to parent-teacher conferences at Shifra's school. Then after all that I pushed myself to go to a friends house for dinner; she had a night with no husband or kids home, so she invited a few good fiends to dinner. That is the stuff I need to be doing more, pain or not. So I went, and it was lovely. I got home late, fell right to sleep, and slept about 12 hours. At present, I'm not in pain (I'm mostly lying down in bed with all sorts of pillows and my laptop desk), but I am conscious of the time- I have to pick up Azriel from school soon, then Shifra, then make food, then take them to guitar lessons and wait there for them, then come home and make dinner etc. You may be thinking why don't I just let them make their own food? They aren't babies, after all. Well, for starters, sometimes I do. Secondly, they have tests and homework, Azriel is practicing for his BarMitzvah and needs my help with that, and Shifra has babysitting jobs and lots of school work. If I tell them to make their own food, something else will have to go by the wayside, and it effects them heavily. They both play guitar and need to practice daily, and there is also an important aspect that they need social lives. The balance is sometimes so hard, I just wind up in a puddle of tears. As for the older boys, thankfully Dov is very happy in his hesder yeshiva, and is taken care of well there. He even likes the food and says it's abundant. Yay for that! Ya'akov is doing OK, staying in Jerusalem for school during the week and coming home every Shabbat. He sprained his foot the other day, and I was worried I'd have to go pick him up with the car because he can't walk on it, but it's not that bad of a sprain and he stayed in Jerusalem to finish out the week. Thank Gd he is in a good living situation as well, and enjoys school. But we got a call from the principal--- the call we were kind of waiting for. Things aren't perfect there, and they need to get us involved. As I said, we were sort of waiting for that call, we know what is going on.

Why am I detailing this all for you? Because I'm in pain any time I am on my feet. And I have kids at home with needs, and two away with different needs. Azriel wants new sneakers. Shifra needs new school supplies. That means I have to shop with them. It's always something. And I'm in PAIN. My body HURTS, almost ALWAYS. And there is no quick fix coming down the pipeline. My pain doctor (Dr. Z) recommended I start up on Lyrica again, but I am not going to yet. I didn't react to it well last time, although I stayed on it for quite some time. But this is different; different type of pain, and I am not on the other meds I was on last time I was on Lyrica. But I am going to give this therapy with the new doctor a try. Unfortunately he's an hour drive away for each treatment, and that alone puts me in deeper pain. I have friends and also family in the city where I go see him (Modi'in), and I may stay the night next time if possible, after the treatment.

Migraine situation is beginning to be unstable. I am still off the Topamax. My Homeopaths are encouraging me to try to stay off it. I had two medium-major migraines recently, but was able to treat them at home and not go to the hospital, thank Gd. Today I have a medium one as well-- I inadvertently ate food last night with a little wine in it, and wine is a huge trigger for me. The headache isn't too bad at the moment, and I took Excedrin (the only medicine I can take), so let's hope it doesn't escalate.

I soon have to do two MRI's- one for my PVNS hip and one for my swollen-of-yet-unknown-nature knee. Then we'll see if the knee has PVNS in it, too. I hope not. It could just be the arthritis. My hips are totally arthritic, so it's just a matter of time, I guess, that my knees would be, too. 

The new doctor (Dr. S) sees this all as one mechanism gone awry. The chronic inflammatory process that was started sometime in my past; exacerbated or caused by the NF, it's all one thing. The PVNS, the migraines, the fibroids, the arthritis, the belly pain. On the one hand, I should be able to look at it positively that he thinks we can make me better. But my reality is that I sometimes want to die. It's just Too Much to live this way.

I don't really want to die, I am completely alive, and last night I was laughing, telling stories, and as alive as can be while hanging out with my girlfriends. I loved that, I felt alive again. But the pain took over. I just tried my darndest not to show it.

I need hope on a daily basis that I will soon be out of pain. I don't want to take Lyrica- it made me dizzy, brain foggy, and sleepy always. But it does help take pain away. But if your quality of life is so downgraded because of side-effects, what's the point? You're trading what for what exactly?

I can't stand this pain much longer.... I say that a lot, yet another day comes and I am again standing the pain. But I hate it. And I don't want life this way. But I want life. But not like this. But I want life. But I want to die if the pain is going to keep being this way. But I want life. But the pain is intolerable and impossibly tolerable all at the same time. I can't. I just can't stay in this kind of pain! God please help me!

You see where I'm at?

Thursday, December 14, 2017

Hard times, hard times. Chanukah 2017

*Coming to you from Be'er Sheva Israel on the third night of chanukah*

I got the results of the MRI.
From the technician who was reding it, it looks like fibroids in my uterus are the problem. Nothing else stood out, except ovarian cysts, which I knew about. I'm going to see Dr. Mashiach on Monday, and we'll see what he suggests as treatment.
It's hard for me to believe that so much heavy pain is from fibroids. I mean, a lot of women have fibroids, it's fairly common. But I am in so much pain I can barely function. And why would this start suddenly three months ago? I did some reading on the internet, and I do see many women have heavy pain with fibroids, but somehow I feel like something worse is going on.

I have taken care of the ulcers and the duodenitis, and I went off the Topamax migraine medicine. But the pain persists. Originally I thought that going off the Topamax did help to reduce the pain a bit, but I realized, when I got back to Israel from my NY trip, that I was in less pain in New York because I was sitting shiva for my father. I wasn't making food, and I wasn't serving people. The opposite, I was mostly sitting around, and people were serving me. When I can rest, the pain is less. As soon as I got back home and got back into my regular life, all the pain came back in all it's glory.

I haven't decided yet if I'll go back on the Topamax.... I'm waiting to see what my migraine situation is. Today might be the first one; I feel one in my right eye ramping up. Let's see if Excedrin can stop it.

I gotta say, I still feel like we're missing something. The whole center of my body hurts. And even when I'm resting, when the pain lessens, it's a strange feeling that things are just wrong, I can't describe it. It feels like something is dying inside me.
I'll write again after my appointment with Dr. Mashiach.

In the meantime I made an appointment for next week to see my pain specialist (Dr. Z). I haven't seen him since I went off the Fentanyl almost three years ago. But if I have to go on living this way, I need pain medicine. It's just too much pain for too damn long. I'm suffering so much, and opting out of so many things in my children's lives, it's just too depressing.
It's not going to be Fentanyl, but I'm sure there are other options. The Percocet doesn't really help, and it makes me nauseous.

I saw my othopedic oncologist last week in Ichilov hospital. It was my bi-yearly follow-up for the PVNS. I left with more referrals for MRI's- for my thigh joint and my famously swollen and painful knee. We need to check if PVNS is in the knee now. So I have to set up those MRI's and go back to the orthopedic oncologist in 6 weeks with results.

That's the news... here's the weather...

66 degrees during the days, light rain around and about. Cold at nights....

No, that's not what I meant...

I meant emotionally.
I'm really not doing well.
My Dad died three weeks ago, and I'm in constant pain physically.
I have to keep living, I have to keep being in the world, I don't want to die, but I don't want to live this way. (just grabbed a tissue). I think about starting some sort of healing through Chinese medicine; I did a little reaching out and have a recommendation. I haven't called yet.

My life force is gray. It doesn't shine anymore. I have so much in me that wants to shine, but I'm in constant pain. I'm terrified that this is my normal now. I thought the pain I had before this was my normal, and I made my peace with it. But this, this is not normal, and I have no more peace to make with it.

It's not a good place in life for me. Let's hope for a working treatment plan on Monday. Let's hope for a pain-free Sarah. I don't even remember what that feels like. I honestly do not know my life without pain since I had NF.

And today I think is the first real migraine since going off the Topamax. It's coming on strong now.

May this holiday of light bring light to everyone, and may I be able to bring you all light very soon.

Sunday, December 3, 2017

my heart hurts- my abdomen hurts.

I got the suitcases unpacked, and am trying to get over my jetlag. I am so overwhelmed with everything from the past two weeks since my father died. I am still kind of shocked, but I'm getting more used to it I guess. I feel that deep, deep saddness that I know well from when my mother died... except now I'm "orphaned". We had an "open house" here for two evenings, in which people-- friends from my community-- came over to give me condolence. I had already sat shiva for Dad, but in New York, without my people around me. The open house was Robert's idea, and it was a really good one. I got to tell things from my perspective, and talk about my feelings and experiences. Our shiva in New York was full, robust I'd even say, but I didn't know 95% of the people who came, they were all Peter's friends from Manhattan (who all seem to be wonderful people). So holding this open house was good for me, thank you to everyone who came.

I was supposed to see professor Mashiach today, but the secretary called and cancelled. She said he has too many procedures scheduled for today and cannot see me. This secretary knows I'm in pain, and have waited for this appointent for a month. She couldn't even offer me a new date yet. I have an MRI scheduled for Tuesday, so at least we'll have that, but I don't have an appointment with the doctor who I think I should be going to.

This is just going on and on.

I did go off the migraine medicine (Topamax) completely. Interestingly, I ramped *up* on the dosage last summer when I was in New York, and now I ramped *down* from it in the same place. I've been off of it for a little over a week. The interesting thing is that the pain DOES seem to be less. It hasn't gone away, not by a long shot, but it did go down. So now I am left with more question marks than answers. But the good news is, as of yet (it's only been a week), I haven't had a migraine. I know they will come back, though. I can pray some magic was done by being on the Topamax and I'll never get the migraines again, but I have the feeling that the other shoe will drop, it's just a matter of time.

So today marks two weeks since my father died. I am still in a sort of shock about that, and so deeply, deeply, saddened. I loved him so much. So, so much. My heart is aching, and the tears just keep flowing.


Wednesday I'm supposed to go to Ichilov hospital (in Tel Aviv) to have a follow-up for my PVNS, and to see if I have it in my knee- the one that is constantly swollen and painful. (I'll need an MRI for that, too.)

I have to voice this here: I am worried that I may have cancer of some sort. I hope to G-d I'm wrong. But in the meantime there is no diagnosis and obviously no treatment plan, and I am living my days at much less than half capacity because of the pain.

When my brother said, about sitting shiva, "I'm glad we only have to do this twice".... the thought went through my head "I'm next".
I hope I'm wrong.
But I just have this feeling that I'm dying of something which is as of yet hidden.
I hope I'm wrong.

Maybe, like Robert thinks, the more time the Topamax has to get totally out of my system, the better the pain will get. Intuitively I don't think so. I think somehow the Topomax did have the side effect for me of abdominal pain, witnessed by lessening of pain when I went off of it. But it's been over a week, and the pain isn't going down any more than it did from the first few days. Something is very wrong inside me. I hope the MRI can help direct us. And I hope Hashem leads me to the doctor who is wise and intuitive enough to help figure it out.