Sunday, June 28, 2015

About death and life.

Standing in the oppressive noon-time sun of the desert
In a huge cemetery, plots empty and waiting surround us.
The sun beating down,
my friend going down,
into her final resting place.

Her brave husband seems so frail.
He takes a shovel, slowly shovels dirt onto his wife's body.
Their children follow suit.
Broken hearts.
We all place stones.

"She was too young."
"I can't imagine him without her"
"This does not seem real"
"The kids..... the grand kids....."

I see my friends and loved ones all around
"We have met too many times here in this cemetery"
"Yes", they say.

I limp and am trying to hold myself up straight.
The pain is strongest when I stand in one place.
And when I walk.
And when I lie down.
It never ends.

I just want to stay in bed because it hurts so much.
I must get up and LIVE.
I have been granted another chance.

I asked my husband what was going through his mind at the funeral.
"You. I was thinking of the fact that it could have been me giving that speech at your funeral".

Shabbat found us looking through old photo albums.
There she is, in full color, smiling, dancing, in every photo album.
Caught me off guard.

Third meal on Shabbat at the home of dear, loved friends. We've been together for twenty years.
He told me of when I was in the ICU and he came in and played violin for me.
My parents walked in at around that same time.
Off the plane, straight to the hospital.
My mother cried "my baby!" and threw herself over me, crying.
Tube in my throat, confusion in my head.
What happened to me? I didn't yet know My Story.

I took a half of Percocet on Shabbat. I just didn't want the pain anymore.
It took the edge off the pain, but I felt awful about putting morphine back into my body.
That was how I  could get to third meal with friends on Shabbat.

News from America, another friend passed away from cancer.
More broken hearts.
Including my own.


I hate you.
(I know, not the most profound thing I've ever said.)

OK, that's out of my system for now.

Tuesday we go to a friend's baby welcoming party... to celebrate LIFE together.
This baby is a miracle. The mother is "advanced maternal age", it's the first baby that stayed with her.
The new mother, one of our previous nanny's, is over-the-moon happy.

Thursday, June 25, 2015

A Sarah sandwich in a tube

We are on our way to the MRI now. I am typing in the car. Robert is accompanying me, I'm happy about that. I don't have to do the driving.

I've been fasting for four hours, and living in the desert, my mouth is completely dry.
I'm looking forward to this being over, and receiving the results, whatever they are. I need to know what is going on, I feel like I can't  move on with anything until I know what is with all the pain.

What I do know, and it makes itself blatantly clear on a hourly basis, is that the Fentanyl still isn't completely out of my cells. A few days ago I almost went straight to my doctor. I felt that I didn't have enough oxygen to breathe. I felt that feeling of a cinder block on my chest, and it is scary. When I walked, unless I went really slowly, I would feel out of breath. That medicine is serious stuff. I told Robert that I needed to go to the health clinic, I felt I needed an oxygen mask. He did his thing... going down to check the internet again about Fentanyl withdrawal. He came up with studies that show that since Fentanyl is stored in the fat cells, it can take up to six weeks to exit the body, because apparently fat cells detox at a slow rate. I'm sure it's some "survival of the fittest" thing, but whatever it is, it did comfort me some that this is just another expression of more withdrawal. I just didn't expect it to carry on for so long, and to repeat a stage I thought was finished. Now I know. I waited it out, and indeed, it passed by the next day. What I know now is that I am not done with withdrawal. I wonder if more pain, on a deeper level, is also going to make an appearance? Let's hope not. I don't think I could handle that.

OK, the MRI is done. But W O W, it was the longest one of my LIFE. I've had an MRI every six months for 8 years now, and never has it been this long. At the end of it, when I couldn't move myself from the stiff position I was in for an entire hour, the technician told me that he needed to be very thorough, making sure everything is clear and visual for diagnosing PVNS, and for the impingement and labrum tear. He did the same on both thigh joints, and he said he also scanned the lower abdomen. He commented on the amount of clips around Gapey, holding the mesh there. Apparently he was impressed.

I prefer CT scans to MRI's although health-wise CT's are much more problematic because of the amount of radiation. MRI's don't use radiation, so they are a completely safe diagnostic tool. But, while a CT is like a doughnut or bagel around the area to be scanned, with all other parts of the body not in the doughnut, the MRI is a big white tube, where if you have your eyes open, all you see very close up is that you are in a very snug tube. I feel quite claustrophobic if I open my eyes. I'd rather just keep them closed and ponder things. if I'm lucky, I get to disassociate and be somewhere else entirely.

Then there are the heavy "antennas" they put under my back and on top of my entire middle- heavy "H" frames that are velcro'd together, front and back, making me feel like a Sarah sandwich. My arm has an iv in it so they can push the contrast dye through my veins at the appropriate times. In this particular MRI, I felt that stuff being released into my vein four times. Each time the fluid gets released into the vein, one starts to feel weird, burning in the throat, hot in the face, then the whole body, especially the middle, gets cold/hot feeling all at the same time. It is not altogether awful, but not pleasant either.

Then, there is the noise of the machine itself. I decided (having much time to ponder the sounds) that it is like being inside a video game with your head as the amplifier, with random jackhammer pounding whenever it wants. One has to wear small foam earplugs (they give everyone their own, fresh pair), and a large foam headset to protect the ears from the volume of the noise. And even with those, it feels like your head is a video game being occasionally overrun by jackhammers. Anyone want to add their personal experiences to this description? I wonder if other people experience it differently.

Home now, still feeling icky from the contrast dye, but it'll pass. You are supposed to drink a lot in the next 24 hours to wash it out of your system.

In the meantime, you know what?
Hashem is showing me perspective. We have one dear friend fighting for her life for 6 weeks already in hospital after a stage 4 cancer diagnosis. Today I heard of another friend who is pregnant with twins (which I didn't know, L.E.!), and simultaneously got a diagnosis of breast cancer.
I have another friend we are worried about... make that another two friends- who have cancer scares looming over their heads, waiting for diagnoses.

So I had a hard MRI? Ill get over it by tomorrow. I don't know what to expect in the evaluation, but for now I have perspective that as hard as things sometimes feel, right next to you is someone who needs your urgent prayers.

Please pray for Chava Yehudit bat Rivka.

yours, truly... Sarah Rachel bat Tova.

Addendum: it is with great saddness that I must notify you that my friend Eva Weil, written above with her Hebrew name- Chava Yeuhudit Bat Rivka, passed away today. Baruch Dayan Emet (blessed is the True Judge).

Sunday, June 21, 2015

Pain. Acceptance. Faith. (eat, pray, love?)

I am honestly not sure if I can keep going with this level of pain. This is what was lurking behind all that narcotic pain medicine, and it is hitting me like a hurricane. I had hurricane warnings, so to speak, but it is much stronger than I thought it'd be. It's very nice to go off pain killers while the medicine is still actively helping with pain. I learned that we *do* forget pain. Just like they say with women and childbirth; if we didn't forget pain, we'd all only have one child. I forgot what was there at the outset of this pain-relief seeking episode 5 years ago, after the surgery to put the mesh into gapey. Either I forgot, or I was lulled into thinking that after this long, it's sure to be better than it was then.

I am presently unmedicated, thank Gd, but what does that mean for the long run?

Well, one thing I pretty much know, almost for sure, is that I will be going through with the surgery to fix my right thigh joint. I have had a lot of fears about it, understandably. What I know is that getting rid of the problem in the right side will lessen my burden of pain exponentially. It won't alleviate it altogether, because the left side bears the brunt of much damage and causes pain as well, of course. I intuitively feel, and have confirmation from the important people in my life, that fixing the right thigh will, in the end, be beneficial if I am going to live life unmedicated.

I have an important MRI on Wednesday. It is for both thigh joints, pelvis, and abdomen. It's going to be long (they told me 45 mins to an hour), and since I have to be fasting, I know it is with contrast agent intravenously, as well. I am relieved to finally have the test, and know for sure what is going on in me. The biggest question is whether or not the PVNS is in the right joint. If it is, than we have no choice but to operate and get it taken out. If it isn't, and the pain is from the impingement and labrum tear, than I have pretty much decided I will fix that, as well. So, unless there are findings of PVNS in the left thigh joint (which there was in 2008 and  has a 50% rate of recurrence), I am looking at surgery for the right thigh, probably in October, after the Jewish holidays.

Well, I can plan, of course, but whatever really happens is the Big Boss's decision.

What I do know is that now more than ever I feel that I am in category of "chronically ill". I hate that label. Since I went off the pain meds, though, it has become clear to me that I am there. You'd think I'd have admitted that years ago... all I can say is that there are differing levels of acceptance of one's situation in life over the years, and having increased pain has been an eye-opener for me. It's forcing me (and my family) to realize that the situation is worse than we had been accustomed to. A wake-up call. I am not willing to go back to narcotics- no way. The price was too high, with no end in sight.

I guess any way we slice it (no pun intended), in May of 2007 when I got NF, I was entering into an uncharted world that would change every single molecule and centimeter of my and my family's known existence. I never dreamed of retiring early from my careers (I was 39). I thought we'd have more kids. I was in the prime of the "creative years". I never dreamed of any of this. I don't want any of this. But as I teach my children, accepting reality is the first step toward faith. I say that because usually accepting reality means accepting a circumstance that we don't want or are not happy with. Admitting that we are in a situation like that, in my eyes, naturally lends itself to striving to make it better. In my world that means turning toward Hashem, and leading a life of emunah (faith). The more connected we are with that Life Source, the more our life is blessed with what we need.

Like the Rolling Stones said, (with a beautiful horn solo in the beginning of the song) "you can't always get what you want...... but if you try sometimes... you get what you need." The "try sometimes" is where the growth is. "Try" is related to the word "trial". And that is exactly what these experiences give us, our trials that comprise our lives.

Monday, June 15, 2015

Philosophically speaking... life.

It's almost been two weeks since my last dose of Fentanyl. Nothing about this has been easy. I am waiting to learn what my "new normal" is, and I pray that it is not this, what I have today. It's been so up and down, it's hard to keep up with myself.

Last week was really good, actually! I went away on Thursday and Friday to a writer's course. It was sooooo good for me, and I wrote and learned so much. It was in Jerusalem. I drove there because it is actually less walking than public transportation, and because I am off the Fentanyl, I am not so sleepy at the wheel anymore. Thank Gd. I stayed overnight with a dear friend, and even got another social visit in that night! I met up with friends for dinner, and it was really special. If I was being cautious, I wouldn't have gone out that night, and life would be that much less fulfilling. (more on that in a few paragraphs.....)

Came home on Friday to the business of Shabbat approaching. thank Gd for awesome Robert... he cooked, drove kids around, and prepared tons of food for the kiddush we sponsored at shul. We had many guests, also, and it was a very full and busy Shabbat. I really did a ton... lots of cleaning, setting, chopping, clearing, serving, etc. It was much more than I felt was in my "comfort zone", but I just kept chugging because, well, you know, that's me. We even went out a bit Saturday night, but I was zonked and not much company. It's OK. The point is that I went way out of my "comfort zone".

That may explain why I am sooooo SPENT now. Yesterday and today have been really hard. I guess that is to be expected. But the pain levels are rising, and I am getting worried. Everywhere that I had pain before Fentanyl, is all coming back (mostly right hip and Gapey, and to a lesser extent the left hip). As I said, I have to wait to see what my real new "normal" is, and this, now, may be more intense pain than when I am well rested, but in life, one is not always well-rested. That is just a fact. And, add to that the issues that I am dealing with regarding sleep. and I am actually not faring so well. Broke down crying today because I don't know how much more of this I can take. I am exhausted mentally and physically. It is *hard* to live with pain. Add to that not sleeping well for many months, and I am deteriorating. Like usual, you can't really "see" that when you see me, but that has always been the case. I keep doing and going and doing and going. But you know what? There is a reason for that.

This is life as I know it. It has been eight years of major surgeries, pain, and medicines, and it's not going to change much. (I'm not saying any of the amazing GOOD from these years, but don't think it doesn't exist! Quite the opposite.) I am glad to be off the narcotics, and this is the "new" life as I know it, but we don't have a crystal ball to see into the future. I have to keep going and doing. I need sometimes to push myself and sometimes hold back. Yes, I push past my comfort zone. I do it a lot. Yes, I pay for it. But I am *living*. What I mean is, if this is "life as I know it", than I need to LIVE it as fully as possible. The bad days really can be very bad, like today. I wish I didn't have such peaks and valleys in my life. I'd prefer even keel, but that is not what I have. If I work to create even keel, I feel that life will be missing it's color. Even keel would mean opting out of many things that I do, putting even more of the load on Robert, and being on a general lower level for the whole family, and myself. I would have a shorter fuse, also, because I need a basic level of order and cleanliness in the house. It's not simple, by any means. Life with chronic illness is an entirely different mindset than life without. What I am saying in too many words, is that I *know* what it means to overdo it. I *know* when it is too much for me, and I do it anyway. That doesn't make it a good thing, or a bad thing, it just *is*. In the best of all worlds, I wouldn't "overdo" it, ever, and life might be more balanced. But we don't live in the best of all possible worlds. I am alive, and I want to live. And if I live, I have to live with chronic pain and exhaustion. That's just the way it is. That's the hand of cards I drew. The pain and exhaustion are better when I rest a lot. But I am not the "rest a lot" type... even though this life of the past 8 years yeilded much more resting than I could have ever pictured myslef doing.

I just don't how much more I can deal with sleep problems and higher pain levels. It's getting me.
But we're waiting this out, and coping as best we can.

Monday, June 8, 2015

Six days after, doing better.

My doctor gave me a standing ovation. 

Literally... she stood up from her chair and clapped. I told her nobody has done that for me since I played in the orchestra. She said she had never done it before, either, but this was such a monumental occasion, me telling her I did it, the weaning is over, she was so proud of me. That was nice, indeed.

So, the anvil was slowly lifted off my chest, and my free-breathing returned yesterday. That was one BAD experience. And, it's behind me.

I am dealing with lots more pain, mainly in my right hip, actually, the one which almost got fixed last summer (but the surgery got canceled because of my allergic reaction to the antibiotic on the surgery table). The left one hurts, too, but it's a different kind of pain. They are two totally different types of pain. My wonderful physical therapist yesterday decided to tackle some weak muscles in the left side. Wow, am I sore today. Easy exercises for some... but my body took it hard. I'll tell her next time and we'll have to tailor it a bit.

I am still doing Tai Chi, and that is perfect for me. Slow, rounded moves, moving muscle groups slowly and systematically. I can shape it to my own body, taking smaller steps for instance. The instructor is very special... lucked out on that one.

Sleeping is still off, but on Shabbat I actually slept through the night. Medicated, yes, but the medicine let me sleep. The insomnia I experience from weaning, no amount of medication put me to sleep. Then the RLS came on strong, and is still strong at night. Even so, I feel that slowly I will be able to get off the sleep medicine, too, but it's going to take time. I've been taking it for 7 years. It started because of having PTSD (post-traumatic stress disorder) after NF. I couldn't sleep because of the trauma, nightmares, pain. My body got used to the pills, and the pills granted me a good night's sleep. I haven't gotten off them since. It's going to be a lot of bad nights to get off them, and I am nowhere ready to start down that path. I am still very weak as a result of the last part of the weaning. everything in it's own time.

The substitute, if necessary, will be the Cannabis. I am now in the process of changing providers so I can get the right type for me. The levels of substances (THC:CBD) have to be tweaked so that it helps me relax (relaxes the RLS), sleep, and have less pain overall. It's going to take another few months before I get it, though, because of bureaucracy and needing to renew my licence. That is frustrating, since I know it is the only thing that helps my RLS.

Going to sleep... please Gd.
We're getting there. It's never going to be 100%, but I am doing what I can to get healthier. I am not yet reaping many benefits I look forward to, but a few of the side effects from the Fentanyl are fading away. That's awesome.

Many complicated issues to deal with, and feeling stronger pain is going to be a big adjustment. One day at a time. Quite literally.

It was good to get that standing ovation, though, you know? :)