Wednesday, April 2, 2014

You do the math. (Bitter post. You are warned.)

Hallucinations. All night.
Brain zaps. All day.
Tomorrow more of the same?
Pray for it to be better.
You do it, I can't.

I should have made a strong mental note for myself when I was in grad school, and I decided to quit drinking coffee (way too much, freshly ground, dark, Colombian roast.... yum!!). When I did that, I literally had the shakes and threw up for two whole days, like a heroin withdrawal or something. You'd never know by the looks of me those two days that it was just coffee addiction withdrawal.

I saw Dr. Z (pain doc) on Monday, directly after the appointment with the new neurologist- more on that later, if I can still maintain enough steady typing and keep myself awake to continue...
I told Dr. Z that raising the dose of the Fentanyl hasn't helped the level of pain at all. It made side effects worse, but gave no desired effect. So, he suggested what I thought the whole time, which was to reduce the Fentanyl dosage to what it was before we raised it. (does that make sense? I am not very clear-headed at the moment- brain zaps every few seconds)

I did that Monday night- put on 12mmg less of the Fentanyl patch.

Yesterday- Tuesday- was a great day, thank Gd. I didn't feel any withdrawal. But, then again, I don't usually get withdrawal symptoms until about 16-20 hours or so after reducing the med. Yesterday I took Ya'akov on a trip to Tel Aviv (an organized trip with other English-speakers in Be'er Sheva) to see an exhibition of Leonardo da Vinci. It was *wonderful*. I never knew all the contributions da Vinci made to society, way back in Medieval times. We both learned so much, and the exhibit was so well done. It had two parts- one part where you looked at (and in some instances got to try) da Vinci's prototypes of engineering, building, flying, scuba diving (!), gear work, and awesome creations of which he only wrote about, and people years after created based on his descriptions (which were all written upside-down and backward, on purpose). The second part of the exhibit was a light and sound show with huge movie screens showing his vast artistic works and anatomy sketches and discoveries. I am blown away by knowing so much more now about him! He's more than just the Mona Lisa. I'd be happy just being known as the artist who "only" did the Mona Lisa!

I got around the exhibit with a crutch and a chair. I crutched, and Ya'akov shlepped the beach chair that my friend (and trip coordinator) lent me (thanks, TI!). It was good I had both things. I did what I usually have done, use the one crutch to favor my left hip, the one which has been operated on a few times already.

So, upon returning from the exhibit with souvenirs and excitement, I went about some cooking, tidying, and then decided I wanted to use the energy I felt to work on my book.
I went about that, which right now consists of arranging over a hundred index cards with thoughts on them, into piles, labeling the piles and detailing my outline. Each thought is a section of a chapter to itself.

I laid all the cards out in front of me on the floor and started categorizing and condensing them into labeled piles. After about a half hour of this, I got hit with a huge wave of dizziness. Dazed and smacked around by a wave of pain, I managed to get myself up from the floor (not a great thing for me to do anyway, but I need a big space to do this index card sorting), and over to my bed. I immediately felt a wave of what I have come to know as "brain zaps". These are impossible to explain unless you have ever had the experience of reducing a dose of a drug that effects the brain, but it is like little pings of electrical circuit misfires in the brain, quite an intolerable feeling.

I fell asleep. It was 8:30pm.
I woke an hour later by kids scrapping about showers. Getting up, my right hip shot pain through my entire pelvis. I then realized that I can no longer use only one crutch; both hips are damaged, and if I favor one, the other will fight back. So much for thinking that I was doing myself a favor by using one crutch.

I went directly back to bed, and had awful, disorienting, disturbing dreams. When I woke in the middle of the night, I was shivering, disoriented. I didn't even know where I was or what my life was about, and dizzy. Going back to sleep, more hallucinations happened, strange dreams. I just now erased a part that I wrote about some of the hallucinations- so unpleasant that no only can I not bear to read them, but I wouldn't want to inflict them on you.

I had set my alarm for an easy 9:30 this morning, knowing I went to bed early, and I can get some solid work done for my book. Needless to say, it has instead been a day of withdrawal symptoms and tears. Although, even through that, at one point in the day I was able to organize the cards enough that I have only seven piles. That is an accomplishment. I actually need to go and buy more index cards, though. My thoughts are not uncluttered enough yet.

Robert made me a wonderful stir-fry, which I craved all day for some bizarre reason.
I need now to go back to sleep. Tomorrow may be the same, until my body adjusts to the lower dose of the Fentanyl.

I had a little pity party for myself today. Why do I have to feel this awful withdrawal crap, why have both my hips in pain, and I am forced to waste so many precious days being un-well. It just isn't fair. Right now, I don't care about platitudes about faith and what is fair and what is not, and who should be happy for their lot, etc.
I also said twice, through tears, to Robert today "you couldn't possibly know how this feels- emotionally and physically. You get to do things *you* decide to do."
(of course that is not always true, because he is married to me, and he doesn't get to do his life the way he wants to do it because his wife isn't a 50/50 partner. See? A real pity party I had today.)

This is just a tiny glimpse of what life will be like when and if I go off the Fentanyl completely. I want that, have written about it often, but my body doesn't take these things very well. This dose change was from 100mmg down to 87.5mmg. Just 12mmg. What about the next 87.5? It could take a year, at this rate.

I wrote once (I saw this in one of my "blog-slog" sessions) that I am putting a moratorium on elective surgeries. I looked at that today and said to myself "Really? Really, Sarah? You think you can just decide to not do any surgeries? Hmmmmmm.... pain meds that stopped working, constant pain, and a surgery that gives a chance at reducing the problem. You do the math.

Sorry I am so cranky today. Although I know I don't have to apologize to you. Thanks.


  1. My dear Sarah. I'm so sorry you are going through this! I can't understand fully, but my heart breaks for you just on what I can understand. Why is all this happening? For what purpose? Or is there a purpose or just random events? I believe we can't know that, because we don't have the view God has. But I still pray for you, for your strength, endurance, decision making, quality of life, and for your family - husband and children. May God hold you all closely. Hugs!!!

    1. You know what, Jackie? What you wrote is the thing I need the most, for people to tell me they are here for me, support me, question God with me, and pray for me when I can't. Thank you with all my heart.

    2. I wish I could do more. But if this helps in any way, I'm glad. I cherish you, my friend, please remember that.

    3. anyone reading this would think we have met face-to-face and shared real hugs before. Maybe not the face-to-face part, but we have known each other from cyber-parenting for more than 16 years.
      Love to you, my friend in arms.

  2. you never have to apologize. wishing you easier days, and only feeling good days.

  3. I too am here for you, sending positive, supportive thoughts. I hope this will soon pass.

  4. Glad you lasted out yesterday!

  5. Thanks, Edna! Hasn't passed yet, but the aliens in my head will get bored there pretty soon, I'd imagine.

  6. Glad the exhibit trip worked out, not so much the other stuff. Sending you hugs from Modi'in.