Wednesday, June 13, 2018

Trouble.

What I am going to write about here is that I'm giving up.

I can not live this way, in constant pain with no hope of it ever going away.

No, I'm not killing myself, I wouldn't want to traumatize my children. I wouldn't do that to them. But really, what is left of me is next to nothing.

What I wrote in the last blog about the fighter? It's lost. I have no more fight.

I'm in very bad shape.

I returned to Dr. F for a few more treatments, and as usual they were painful and rigorous, and I just can't do it anymore. I can't go there, leave dazed but in fairly good spirits, wake up the next day in more pain than I had the day before, lick my wounds for a week (from extreme acupuncture and extreme body treatments to ostensibly break up scar tissue), then go back a few days later and do it again. I just can't without seeing real results that last more than a few hours (if that) after treatments. It's more than a thousand shekels a week, and I don't have that kind of money. I have four kids to raise, and an unknown future medically. I have no pension (or a tiny one from the 12 years I was in the orchestra), and have no reason to believe that I won't need tremendous medical care as I age (I'd rather not age, honestly. I sometimes hope that G-d will just take me by the morning so I won't have to suffer anymore. But then I wake up, and have to cope.). I am extremely worried about finances, and I can't throw money into treatments that are questionable if there will be any lasting effect. I have yet to see it.

So without any hope of ever getting out of pain, that kind of leaves "hope" out in the cold.

Any surgery would leave me also in tremendous pain, and possibly not help. I've had enough insanely intense abdominal surgeries to know that there is no magic there, either.

There is no way out of pain except for more pain piled on top of it.

I am no longer able to tolerate that.

Someone who I trusted yesterday said to me (in a text) "you used to be brave, but I'm not sure about now". That hurt went deep, deep into me. Thank you for that. You know who you are.

So what does giving up look like?
I don't know because G-d keeps making me wake up.

I'm nearly off all my medications. Remaining to go is 1/2 of an anti-depressant, and the 1/2 is not a therapeutic dose. Then last to go will be the sleeping pills. Maybe.

Is this wise? I don't know. I wanted to go off them, nobody forced me to do it (but I certainly was lead to believe that I'll be better off without them). But I'm not convinced that I can live life without them. Witnessed in the deterioration of my emotional and spiritual life. I pretty much know that if I'm going to live, I might have to go back on an anti-depressant. The Chinese medicine doctor may know a lot about Chinese medicine, but he probably should stay out of psychiatry.

But I'm in no-man's-land right now. I'm pushing away all those who love me most; I'm really good at that.

I want to die but I can't.

I'm supposed to travel to the states in August, I don't know if I'm going to make it. I have appointments with the Mayo clinic after my father's gravestone unveiling, I don't know how I'm supposed to do any of it. And what is the Mayo clinic going to come up with besides possibly more surgery? There *IS* no solution. Who am I kidding?
I'm supposed to travel with Azreil, rent cars where I go, get to three different states in as many weeks, and I don't see it happening.

The way things are going, I'm not going anywhere. Not physically, emotionally, or spiritually.
I've never been so stuck in my life.
I'm in trouble.

Wednesday, June 6, 2018

Fighting... dedicated to my mom.

Dedicated to my mom, on her second yahrtzeit (marking to the day of the second year of her passing)

~1999

The theme of bearing scars, and fighting adversity has come up in a few interesting ways recently.

There was a "thing" going around Facebook about finding out what was the #1 pop song on the charts in the year you turned 14; find out that song, and supposedly it defines the life you've lead. I Googled "pop chart in 1982", "#1 hit song", and I got "Eye of the Tiger". I think we were playing it in high school band, too, that year... good song!

Here are the lyrics:
Rising up, back on the street
Did my time, took my chances
Went the distance, now I'm back on my feet
Just a man and his will to survive

So many times it happens too fast
You trade your passion for glory
Don't lose your grip on the dreams of the past
You must fight just to keep them alive

It's the eye of the tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all with the eye of the tiger

Face to face, out in the heat
Hanging tough, staying hungry
They stack the odds still we take to the street
For the kill with the skill to survive

It's the eye of the tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all with the eye of the tiger

Rising up, straight to the top
Had the guts, got the glory
Went the distance, now I'm not gonna stop
Just a man and his will to survive

It's the eye of the tiger
It's the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
Stalks his prey in the night
And he's watching us all with the eye of the tiger

The eye of the tiger

"Just a man and his will to survive"...

I do have a will to survive, it's kept me here for the past 11 years through horrific illness and hopelessness. It's recently been challenged, but that 'will to survive' is still with me. But so is the challenge of that will.

My mom also had the will to survive. When she slipped into a septic coma (sound familiar?) at age 79, with a serious heart condition, nobody (except me & Dad) thought she'd defy odds and ever breathe again on her own. But slowly, over the course of three months, she did just that- got off the respirator. She fought other diseases, she got home from the hospital, at age 79, after a three month coma. But she couldn't walk again. Post-Sepsis Syndrome might be to blame for that, nobody ever figured out why she couldn't walk anymore. She was bedridden for 4 years thereafter, but in her own home with a live-in health care worker. She survived, but her will to keep fighting weakened, as it would.

The main differences between her story and mine are that my septic coma was at age 39, and I had many surgeries to contend with thereafter. She did not. She lived until just a few weeks before her 83rd birthday. I have a long time to keep my survival will going. (We assume). But I did walk again, I re-learned to walk after NF, then again and again with all the hip surgeries. I endured horrific pain with my post-NF abdominal surgeries. It's just, dealing with chronic pain wears you out. My mother was never in pain, thank G-d.

Can I endure this? Will it ever end? I'm sure she asked herself those questions daily, and that was without being in pain. But she endured horrific loneliness being bedridden all those years (some of it self-imposed, but I won't get into that here).

But chronic pain is a very lonely road. You can't talk about it too much because the people around you can't deal with it.


The second song which came into my head yesterday (also because of something I saw on facebook), and didn't leave my head all day, is "The Boxer" by Simon and Garfunkel:
..."and he carries a reminder, of every glove that laid him down, and cut him till he cried out, in his anger and his shame, I am leaving, I am leaving, but the fighter still remained, yes he still remains..."
Well, I did run away from home, this past Shabbat.
Something triggered hurt in me (I am aware of what it was), and I put some things in a backpack, and went out, without anyone in my family knowing where I was. Remember, it was Shabbat... no car, no wallet, no phone. I went walking, wound up at a destination about a kilometer away- surprised myself. I was gone for 5 hours. In the broiling heat, and in pain. It was somehow freeing and deeply sad at the same time. But I came back.

I am fighting the constant urge to leave still. I'm fighting the urge because you can't run away from your problems, they come with you if you don't take care of them. I'm also fighting the urge because, well, I'm not well. It's complicated to go stay with someone else. I'd love to just go alone to a hotel, actually, but can't bring myself to spend the money. Staying with someone else means traveling (I want to go stay with my friend who lives a 3+ hour drive away), and dealing with a possibly not comfortable bed, or bathroom arrangement, and my body needs creature comforts. I need my kitchen and my cooking, and my bed and bathroom. I know that sounds superficial, but I'm not 25 anymore, and I'm not well. Even with all my creature comforts I'm in constant pain. I don't travel well.

So, I'm not leaving, even though I have been heard- in my house- saying more than a few times over these past few weeks/months, "I am leaving".  Yes, even with the kids hearing it.

But the fighter still remains.

My fight constitution goes up and down, though. I'm not sure how much more "resuscitation" efforts my body and soul can endure anymore. I've been in too much pain for too long.

But there is nowhere to run away from my problems.
I'm working on them. 
In counseling.
Sometimes alone, and sometimes with Robert.
I'm not running away. 
I came back.
For today.

Tuesday, May 29, 2018

Bronchitis, Options, and shoe shopping

When I lived in Boston, I used to get bronchitis every winter, and the cough would last for months thereafter. Sometimes I took antibiotics, but it didn't seem to help. It was probably viral.

When I moved here, the frequency lessened (much easier climate!), but I still was prone to bronchitis every now & then. Especially when I was pregnant, I used to get it with each pregnancy.

Now I have it again. And no, I'm not pregnant. Just sick. And sick of being sick.
This particular round of bronchitis has been particularly bad, kind of similar to the one I had two years ago... (here) when I had internal bleeding from the coughing. I have had fevers up & down, too, over the last few days. Really, really unpleasant.

At one point on Shabbat I couldn't rest because of all the coughing, and I was in horrible pain, so I decided to take a cough medicine that Robert bought in the US, an over-the-counter thing. I haven't been taking much at all in the way of Western medicines, I'm nearly off everything (!). My body went into a bit of a shock... I actually hallucinated with this simple over-the-counter cough medicine (Mucinex). Real hallucinations-- like clowns in the back of a big truck, and also being in a library next to a card catalogue wall (remember those?), and actually one amazing thing was that my mother (may her memory be blessed) came to me. Not the sick, bedridden mom that I had in her past 4 years, but when she was maybe about 45... healthy, young, pretty. She came to me (I think I had called out for her literally), and started stroking my curly hair away from my face saying "yes my doll, I'm here, everything is OK". Then I lost it- started really crying. ("mommy!") And I was home alone, Robert & the kids were out at friends for the Shabbat meal. But, even though it played tricks with my mind, it stopped my cough for a while and gave me some desperately needed rest.

I have actually been taking that medicine at night, because it helps me sleep. The hallucinations have stopped. I can't use my medicinal Cannabis when I have such a bad cough, so this cough medicine helps me sleep.

At first I was getting the pain from the "anchor" clip of the mesh in Gapey, and thought that internal bleeding was happening again, but today it seems better, not so purple. I can see the blood pooling behind my skin graft because those clips get so irritated with the cough.

Which brings me to the discussion about the mesh and clips... I'd like to get them out. Well, I shouldn't say "like". But, I think they might be responsible for my abdominal pain and inflammation. I don't know that for sure, but I have reason to believe, that's obvious.

But it's not that simple. They are holding me together. That big piece of mesh is representing half my stomach wall muscle. If it was taken out, there would be nothing there. I have NF to thank for that. (I remember the surgeon from the NF telling me that the bacteria got a "tiny bit" of muscle).
My options for reconstruction are not good ones, either. Option one is with a muscle graft from my own body- either from my back, or a part of my calf muscle. That would leave me with another big wound to heal, along with a major abdominal reconstruction. Not savory. Option 2 is using a cadaver muscle. I don't have enough information about this, but it seems I'd have to be on immunosuppresants for quite some time after surgery, so my body doesn't reject it, and that isn't ideal obviously, either. The idea of a survivor of NF (and a zillion infections since then) going on immunosuppresants is, well, at best, counter-intuitive.

But what *really* are my options? To stay in pain from now until I die? That's such an awful option, I can't list it as an option. To return to treatments with Dr. F when I see that after so much hard work (on both our parts) the pain returned as if nothing had changed as soon as I had to stop treatments? He's returning at the end of the week. I don't know if I will resume treatments or not. It's extremely expensive, and I was hoping for more improvement by this time. I don't know if I should return to him or not. The treatments helped while I was doing them, but there doesn't seem to be much, if any lasting effect. He is quite sure that I haven't had enough treatments to really know for sure. His original estimation of one month of treatments for every year I've been sick, well, that's only been less-than-half fulfilled at this point, so he is telling me I am not giving it a fair go if I leave now.

Other options..... More abdominal surgery? Or stay in pain? Neither, thank you. I just don't know if there are any other viable options. So far no surgeons here will touch me, and the words of my last surgical consult with the top guy in Hadassa Ein Karem hospital in Jerusalem are ringing through my head "not only am I not going to operate on you, but I am telling you do not let anyone else operate on you. You could easily be put in a much worse situation". It all makes me want to curl up and die, honestly. It's easy for him to say that, he's not living with constant abdominal pain.

I am considering getting consultations while I'm in the states. But if someone puts forth viable plans for a doable reconstruction (big *if*), it's a complicated decision. There are the obvious reasons which I stated above, but also time constraints. I'll be in the states in August, and will be doing some consults in mid-August. But, Azriel's BarMitzvah is at the beginning of September, so I couldn't do any surgery until after we came back to Israel for his BarMitzvah, and then return to the states again after all the Jewish holidays in September/October? And doing surgery in America, who will be with me? Who will take care of my kids? We're talking a minimum of 6 weeks before I could travel after a procedure like we are talking about. I remember 6 weeks after the surgery to install the hardware-- I was in horrific pain, nowhere near transportable. (THIS blog post is from 5 weeks after that surgery...) It makes my head spin.

Then I think, I should go back to Dr. F (I have a tentative appointment this Friday), and put all my eggs in one basket (as if I have any eggs, or baskets, for that matter) and pay huge amounts of money for an unknown result. I've been doing that already.

As I said, it all makes me want to curl up and just not wake up one day.

But I am not dying, I do wake up every morning, whether I want to or not.

I do what I can for and with my kids, but that is less and less as time goes on. I haven't cooked a meal in G-d knows how long. [but after I wrote that sentence I decided I'd cook dinner last night. I did, and the kids loved it. But I was in such a foul mood, life is just too damn hard.] I took Dov shopping yesterday, it was a rare opportunity to spend time with him; he is so rarely home. What a special, amazing person that boy is. He hadn't been home for a month when he returned this Shabbat. He needed shoes, so me & my bronchitis and fever took a bunch of Tylenol's and went out shoe shopping with him. Then today I took Azriel shoe shopping (they needed different stores, I couldn't do them both at the same time.), after taking more Tylenol's. And I'll try to make some sort of dinner. Because I *am* alive, and Hashem still thinks I'm worthy of mothering these children He has entrusted me with. But if it weren't for them...?

I don't know how any of this is going to get resolved. I do plan on keeping writing though, so we'll figure it out. Or not.

How low does one have to go before he gets to see the promise of hope?

Everyone tells me it's unacceptable, not allowed in the least to give up hope.
I guess they don't know what this feels like.

Tuesday, May 22, 2018

ready to give up.

It's great to hear from my friends when I don't write a blog for a while. People think one of two things when I don't write- either that I am doing so well and life is chugging along that I have no time to write (that's the easier option to choose when you don't actually know), or that things are pretty bad, and I can't write.

Unfortunately, for those who called and wrote to me, they found out that it is the second option. I am being openly honest with everyone I'm close to... things are very, very hard.

You all know the expression three steps forward, two steps back? Well it's usually meant to put a positive spin on things that seem to not be improving, but we don't see the incremental progress.
That's not the case here. Physically I have slipped back all three steps. And sometimes the pain is so bad that I feel it is borrowing from any future progress. I am in so much pain these days, it's pretty much exactly as if I hadn't done the treatments with Dr. Frischman. I'm sure, intellectually anyway, that there must be still good things that have stayed in the "better" state after more than three months of treatments (including the two week intensive living with them), but if you take out the intellect, my body does not feel any better. The doctor has been in the US for a few weeks, and I won't see him for close to another two weeks. The big question is... is it really helping?

Things have been just. so. hard.
Incredible pain, constantly, unless I lie down, and even then sometimes it can take hours before it totally goes away.

I have been crying every day, for the pain, for the hopeless feelings, for my anger, for everything going wrong. For my lost life of which I am living every day. For my lost identity, for the isolation of being in pain, for my hurting marriage, for my hurting kids. None of this is sustainable.

We have started seeing a very good counselor. I hope he can help us see through to what we used to have, and get it back. One of my kids is seeing him, too, and that seems positive for that child, too. We don't go together, though. The child has their special appointment time, and me & Robert have a different appointment. Maybe at some later point, if me & Robert can keep things together, we will do family counseling. Because you can't imagine how this has effected everyone. It just feels like a huge, failed recipe, even though one uses all the right ingredients.

And I can't separate my physical pain from my emotional pain, and how much would I be better able to handle life if I were well, or at least not suffering so much.

I am not well, in any sphere.

And if that's too hard for you to read, sorry. I can't water it down.
It's even harder than what these words say.

I am not discounting the definitively good things that happen in my life. Amazing friends, a few wonderful beach days, being the recipient of flowers after the recent holiday when the synagogue was decorated with flowers.... when the holiday (Shavu'ot) was over, someone dear from our community brought me some of the flowers. That was so special.
We have new, wonderfully comfortable electric beds that we got for our 20th year wedding anniversary, and many other areas I could show gratitude to God. I know I should show more gratitude in my blog. That's probably part of my problem, that gratitude runs thin when I'm in pain and feel hopeless that anyone will ever know what it is or how to help me.
Pain... it's a really, really awful thing to live with. This level of pain, I could never have imagined that this could happen, with no clear promise in sight of it ever going away.

I played horn one day last week. It felt like my long lost soul again in my arms when I held my horn, and did some minor repairs so I could play again. I played a lot that day. But it's not sustainable, it hurt too much to continue. It hurts to play. I want nothing more than to be able to play again. If I could have some of ME back, maybe I could be in relationships better, you know?
But I can't see through the dense fog of constant pain to maintain any sort of real hope. In anything.

I'll be in the US in August, I am looking into options for diagnosticians/internists there.
Life is hell. I don't know how any of this is going to find resolution.

Monday, May 7, 2018

The state of The Union

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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