Wednesday, April 9, 2014

Medical update, with a surprise fall.

Short medical update (short is good, right?):

Neurologist appointment:

I liked this doctor. He is a migraine specialist, one of the best here. He gave me a new med that isn't in the family of the ones I am allergic to. I used it once already, and it held off the migraine! It worked!! I felt some side effects, but totally livable. I am still cautious because I've only used it once and want to make sure it will be consistent, but it was pretty awesome that it worked already once.

He also suggested I work with his colleague, who does *hypnosis* for migraine sufferers. Isn't that cool? A main-stream doctor suggesting hypnosis. He said "I thought you would be the type of person to be open to it". He highly recommended a doctor who specializes in this sort of hypnosis. The doctor didn't have any open appointments for quite a while (he only comes to Be'er Sheva once a week, and is very popular), so I got one for the summer, but I hope to keep up with requesting a closer one.

Orthopedist appointment:

This was with my regular orthopedist in Ichilov (Dr. R), who has operated on my hip twice. This orthopedist is not the orthopedic oncologist- that's a different one who deals with the issues of the PVNS. Confusing, right?

Dr. R's opinion was quite different than the opinion I got from the orthopedist I saw two weeks ago, who is Dr. R's mentor. Does that make sense? Put it this way- two weeks ago: my othopedist's mentor. Two days ago: my regular orthopedist. Two different opinions. Maybe that is a bit clearer?

The opinion of the mentor was to operate on both thigh joints, basically the same way, arthroscopically, repairing the torn labrum (which is bilateral) and cleaning out scar tissue.

When I showed that letter to Dr. R, he said he would not be willing to go into my left hip again. He said it was too dangerous, and the possibility for infection and complications would run too high for him to take that risk. Three arthroscopic surgeries is too much, in his opinion. He would rather do a total hip replacement (THR) than what the other doc suggested. Along with that, he doesn't recommend doing a THR until I am older.

So, basically, we have to leave the left hip alone. It is quite painful, but nothing more can be done about it at this point, unless I go looking for another surgeon who is willing to go in arthroscopically to fix the left one. I am inclined not to do that; Dr. R scared me about going in to that joint for a third time.

However, we will be fixing the right one. It also has a a torn labrum, and scar tissue because of that. So, theoretically, after that heals, my general pain levels *could* go down. We can pray.

That surgery will be some time next month, I will have a date when his secretary calls me.

Oh, and just to make things interesting, I fell on my way to the train, to go to Tel Aviv. Slid right on my face. Lovely. I had broken into a bit of a jog to make the train, I cut the timing pretty short, and I didn't want to miss it. I think the hem of my pants was a little too long, and I slipped.
I'm OK, thank Gd. Got banged up a bit, cuts on hands, bruised face, but nothing more than that. It could have been a lot worse! Also, I had my computer back-pack on my shoulder, and that also went sliding (along with my glasses). When I got onto the train (yes, I made it! People outside helped me. That was really great.) I cleaned up my bloodied hand with alcohol wipes, which I always have with me... for just these occasions (for the kids, never thought it'd be for me.). Then used the bandaids I also had in my wallet. What a good mommy, equipped with boo-boo fixers.

Next order of importance was to see if my computer was OK... of course I was worried about that! It booted up nicely on the train, got wi-fi, no problems, thankfully. Yeah.

Now my wrist is acting up again- the one I had sprained and splinted for so long about six/seven months ago. I fell onto it, and it got sore in the same place again. Boo-hiss. It'll be OK, though.

I'm exhausted! The day with the fall, Tel Aviv orthopedist, and a bar-mitzvah party the same evening was so exhausting that I had to lay low and make up for it the day after, and even today. Just so exhausted. Pesach (Passover) is around the corner, and I feel too weak to do the special cleaning that the holiday calls for. Thankfully overworked-and-underpaid Robert will get a lot of it done. I will do what I can when I can.

Well, it wasn't as short as I thought I would make it. That's OK. :)

My seven-year marker is coming up soon. The day I got sick with NF. The day all our lives changed. May 2nd is the day I crashed, went into the coma. Also it's my late-father-in-law's birthday (may his memory be a blessing). He was here visiting when I got sick. We were supposed to go bowling for his birthday.

I'll write more about what the seventh year anniversary means to me soon. It is a very significant anniversary.

Good night from a very tired, but resilient blogger in Israel.

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.

Monday, March 31, 2014

The winds of change

winds bringing in clouds, sun showing who is brighter.

While thinking in the direction of upcoming surgeries, there are major unsettling thoughts going through my head:

Is courage going through with the surgery, or searching for other ways?

Do I have confidence in my direction?

We never really know what it's gonna take to get us to where we need to be, so we ask ourselves: what is God's plan for me??

I realize that I have control over how my destiny unfolds. That is such a big responsibility, how can I make it small enough for me to internalize?

While doing what I have recently named "Blog Slog", slogging through my almost 7 years of blogging to get excerpts and snippets for my book, I see it *all*. I feel it all. Mostly, I feel God's hand in all these difficult decisions I have had to make. It's like God says "here's my hand, extended to you. I have saved you many times now. Your work is now to extend your own hand to reach mine, and be a partner in your journey. *You* have to make decisions.

Now I have made decisions to have both hips operated on, with the burning hope of returning some of the quality of life I have lost to the meds. And the pain.

So you know how complicated it is to make decisions to have your body operated on, in the hopes of some outcome that nobody can promise you? They (the docs) have a good idea that these broken parts of my thigh joints need to be fixed, and then I can slowly go off of the pain meds- the heavy stuff.

I have to pray really deeply to feel that I am making the right answer.

Later this week I see my orthopedic-oncologist to have a check-up (which always leaves me limping... "yes, that hurts, it always does, so please don't do it so casually!" Of course, I never have he guts to say that even though this is the guy who has gone into my thigh twice to operate on it.)

At this appointment in a few days I will get clear. I know I will. I need to give these surgeries a try. Being on such heavy doses of morphine pain relief is no more the optimal solution. It's what I went for instead of making a decision.

I plan on scheduling the surgeries. But I know he will ask me... which leg first? How do I answer that? They both hurt! They often take turns (but not always- I often get it from both sides). Do the right one first because it never had a surgery, and has less of a chance of infection? Problem with that is then I have to rely on the left one for transfer of weight, and I know for sure that it can't handle overuse. Or the left one, which has been fixed twice, so I can use the un-operated-on right thigh for transfer of weight I'll need after surgery? That will also cause more pain for the right one.

This is me after my most recent surgery, two years ago, at Purim (when we dress up in costumes):

No my best angle, but the point is clear... Superwoman. I can *do* this. Even on crutches.

Oh, and just for update's sake: tomorrow (Monday) I *finally* get to see the top neurologist specialist on migraines. I waited four months for this appointment! I PRAY for answers. Are my horrible migraines from the meds? There seems to be no rhyme or reason. Oh, and I just had another killer one on Shabbat (yesterday- Saturday) which forced me to take cover in my bedroom instead of enjoy our company we had over for lunch! That's what I mean by quality of life. My leg problems do the same thing. I can't walk places- that cuts out a *lot* of family activities, and invitations for Shabbat, when we don't drive.

What I know is that our bodies are interconnected, and one part cannot be treated without considering how all the rest will react. What I also know for sure is that once a person has their health thrown off in a big way, it can be nearly impossible to find balance again.

I used to be a 100% healthy, strong woman with babies at home, working full time in beautiful jobs (demanding in their own ways, as we know). I took care of all of it; I nursed all my babies over a year, cleaned, laundry, cooking, arrange babysitting when I had to go play concerts. It was a busy life, until this insane disease brought me down in a two day time span. BAM. God clearly said "Sarah, stop. You got off cheap this time. Take care of those souls I gave you. You are not even close to ready for more babies. This is the only way you could hear me, I'm sorry. You are always my precious loved one.

Here is a quote from my book:
"Mother these souls. The ones I've already given you, Sarah. Your talents are merely supporting directives. I heard your prayers, I gave you beautiful children. I've saved your life, I've cradled you in my palm. Now is the time for you to reach out your hand to join with mine.My message now is abundantly clear.

OK, God, I'm listening. Ya got my attention. You've had it since I first said it to you, writing it on my blog, in 2008, a half of year after I survived NF. I think that was the point I was in the mental health institution for the PTSD. Boy, was I listening.

~~~~ Now, from musings to mundane~~~~~

After the neurologist tomorrow, I go to my pain Dr., Dr. Z. Haven't seen him in a while. I plan to discuss with him lowering the dose of the patches. Last time I raised it (was it three months ago?), it didn't help the pain *at all*, and just embellished the existing side effects. I will very decidedly tell him I need to lower the dose. Unless he has a really good reason for me not to, I may be starting another teeter-totter of withdrawal. It will bring on the symptoms- aches and pain in the bones, with no fever. Feels very weakening and awful. BTDT. But it only lasts about a week.

Enough to digest for now. For me, too.

My love goes out to each and every one of you who I know are holding my hand through my blog. Without you, part of me could never have bloomed into what it is blooming into.... birthing my book.

PS- I am fishing for book cover ideas. Anyone? I have some ideas, but nothing sits with me yet. I'd love to hear your creative thoughts! I may even use them!l Perhaps some sort of journey over a footbridge, like I have for my doula card logo. Visions of sketches of medical apparatus: walkers, crutches, a person on life support, crossing the multi colored bridge to a woman and her family, walking along a path, which continues on, even onto the back of the book.

I'd love more *different* ideas! Robert jokingly says to put a big- life-size picture of Gapey. Shock value sells books. Hehehe

Monday, March 24, 2014

Final decision after second opinion yesterday

I have been in limbo for so long regarding how to proceed. The pain in my thigh joints has intensified to at least double what it was when I recently raised the dosage of the Fentanyl. Raising the dose didn't even seem to help, just make side effects worse. I am going to see Dr. Z soon (pain specialist doc) and have a talk. I want to reduce that last step-up we did with the Fentanyl. Knowing how that will effect me- reducing the dose of a narcotic- is so unpleasant to think about. But I am determined. I'll get through it. I've done harder things.

After seeing the specialist yesterday for the second opinion (in Tel Aviv), I finally I have come to solid decisions regarding what will be done to ease the pain in my thigh joints. I needed someone to help me organize things in my mind, and explain pros and cons from another perspective.

After the predictable eyebrow- raising reaction that I have become so accustomed to while telling my story, he said just what I wanted to hear... "OK, let's make some order out of all this information."

So, getting down to business. He popped my MRI into his computer. Unfortunately not my most recent, but a year ago. The most recent is in my file at Ichilov. He agreed that it's not a good idea to do a total hip replacement at this point. Yes, it may help my pain, BUT, my physical situation doesn't immediately call for it. He said it's like of you have a problem with a car motor, and find out that it is a few screws that are not functioning. So, what do you do? You switch the screws, not totally replace the engine. Then, *if* the new screws still don't work, and the motor is still not functioning well, then you switch the motor. So, how does this translate to my thigh joints? Well, he suggested surgery for both of them, but not to switch any parts. They both have torn pieces called the "labrum", and that makes the joint pop out a lot during walking, pressing on nerves.

He suggesed to operate on both, one after the other.
For me, I know that means I'd have to block out ten months or a year to recover from [both of] those. But, if I have a better chance of getting out of pain.........

He is a *wonderful* man. So caring and respectuful, and explained everything, saying that he won't let me walk out the door unless I understood everything. He took out models for me to show me the anatomical parts we are talking about. It was a very positive experience! So unusual for doctors- and surgeons- and in my experience, especially orthopedists. The physical exam was gentle, and he actually stopped at the point when I said it hurt. My other orthopedists often go way past that point before they hear me.

So, I will go with that plan. First operate on the right thigh, fix the labrum, then after that heals sufficiently, do the left, basically same surgery, but the left side needs cleaning out of all the scar tissue. I asked about doing them together, but the doc said he doesn't recommend it usually. Doing them both at once significantly raises the possibility of post-surgical infection and complications. The body is weaker if both joints are done at the same time, and less efficient in fighting infection. OK, I'm conviced. That argument will always convince me without question.

So, at the beginning of April I will see my orthopedist at Ichilov, and schedule surgery.
Unfortunately the surgeon who I saw yesterday no longer operates. He is taking a break. He is seeing patients, giving opinions, working in the orthopedic unit of a hospital. Oh well. However, he agreed that my orthopedist who has operated on my left thigh twice is the best for the job.

Then.... can I get off pain meds? PLEASE God????

Again I felt my face start to burn and feel my eyes well up with tears when I told him that this is all for quality of life. I need to be off the meds for me, for my family. I explained how it effects me: can't work, I sleep tons, can't drive distances, need babysitters to help take care of my kids because of pain and the meds, well, you know all of this. Many unsavory side-effects. I don't have to repeat them.

Next update may be a while from now. I am into writing my book, and need all the time I can eek out. I am loving it. Once I have the chapter outline complete and on a microsoft XL spreadsheet, I will reveal the title on the blog. I am so excited about this writing, and all the progress I am making. It is really like a creative substitue for my playing music.

In doing the "blog- slog" (going through my tremendous amounts of writing) for my book, I realized how much I have been in a deep struggle with pain since day one. Almost seven years ago. Seven years of fighting pain, seven years of hope that I will win the struggle. Seven years of pain, almost every day, from the beginning of recovering from NF. Right from the very first day, I thought the pain would be temporary. I never could have thought what the future would hold......

This excerpt is from the first day  of me coming home from the hospital after being there almost a month with the NF. It was erev (the day before Shavuot night), 2007.

"The worst part of my day still remains the bandage change. It is just so scary to know that I am about to experience enormous amounts of pain. I took a percocet and another pain killer on top of it a half hour before, but it was still just awful. I took off the bandage myself while sitting in the shower like they did with me in the hospital, with Robert there for support. Hurt, hurt, hurt. Yuck, fear, owww. Then after the shower, after managing to actually wash my wounds (the skin donation leg hurts more now than the wound itself) I was dry and ready for rebandaging. The nurse at the hospital had taught Robert how to do it, and also my dear friend Hilary (nurse/midwife) was here for lending pointers to Robert and moral support for me. I needed it. The antibiotoc ointment that goes on the bandages burns me very much and that feeling lasts for about a half hour. Hilary was here reminding me to breathe and get through the pain. It's over now until Thursday morning- they told me it must be done every other day at least, but every day is better. So, we did it at 3PM today, tomorrow is Shavuot, so we'll do it on Thursday morning next. I am looking forward to ending this war with pain I am having which seems like it has been years, but actually only 3 weeks. The wound itself is doing much better- B"H- it aches more now rather than the sharp chisel-sort of pain it used to be. Looking forward to the right leg (donor skin) getting to that condition. It is just so painful. Anyway, I am so blessed to be home and with my loving husband and kiddies!! This will all pass, Of that I'm sure."
Tell me, do I still have that sort of optimism? I think I lost it, only to replace it with cynicism. I don't want that to be me.

The next surgery, the next chapter, will begin soon.

Thursday, March 20, 2014

"Thursday in the afternoon" (From Crosby, Stills and Nash "Suite Judy Blue Eyes")

One busy Jewish holiday on Sunday.

One day of no school, driving kids around and shopping (in a huge mall) with an indecisive teen.

One out-of-town wedding where I totally kicked it up and danced lots and lots. I chose to do that. I can't not dance at a wedding unless I am forced to, and I have someone to talk to who is also not dancing.
This was a good friend who I have known for 19 years, and he is getting married for the first time at the age of 53.

The bride and groom ( in a white robe on the left, bride on right- duh.) had their backs to us, their faces toward Zion., the place where the Beit Hamikdash will be, in the walled city of Jerusalem. The old Rabbi with the black hat is the groom's Rav, and also I used to learn with him when I went to the women's yeshiva so long ago! It was wonderful to see him, and I got to talk with him a while at the party.

The night of the wedding I wasn't in pain really, even on the drive home. But when I woke up the next day, I took that first step out of bed, and *knew* I was in for a hard day.

Now it's two days following the wedding, still in intense pain. Left hip, the one that my orthopedist recommended not to get a replacement for. Literally limping and almost cannot walk.
(I'm going to a new orthopedist for a second opinion, for both hips, on Sunday).

Today, Thursday, I was put in the position to have to do a long-distance drive, round trip (2nd time this week out of town). A series of bad luck made me & Ya'akov miss his train to his doctor in the center of the country. I am so tired. The drive back will be agonizing to keep myself awake and aware.
It hurts, my poor leg, it hurts.

(p.s. to that one- we made it back home in one piece, BH, but it is crystal clear to me that I cannot do long distance driving. No more, no matter what. I am literally drugged, and cannot keep from spacing in an open road. I had the window open (cold), and I was slapping my cheeks, and I still wasn't attentive enough, but that is how we got home. I was freezing out poor Ya'akov. That's it, though. Either someone else drives, or the child takes a train or bus, or we cancel the appointment. No choice. Check off another point for losing independence.) Leg also hurts even more now after the trip. The whole thing feels awful. :[

The renewal of my handicapped parking tag has been twice rejected. This is after my orthopedic oncologist *specifically* wrote in the summation of my last visit that I am to be given a handicapped permit because I cannot walk distances, and there has been a steady deterioration regarding the condition of my hip, and of the pain.
Now I have to bring it up with a non-profit organization here which is for equality and rights of the handicapped, here in Be'er Sheva, to back me up and help me get my permit renewed. Is anything easy?

Just a few days in the life.....

I want to accept that this is my life, that things are the way they are, and I am doing as much as I can in my control to make things normal and good for everyone, and myself. It is just that when pain strikes, strong, it is the only thing one can think of. There is nothing else I could possibly write about, nothing else I can possibly do to put it aside and "go on with life". Nobody can do that with pain. These problems are with my legs. I need them to walk, each step taken, every hour of every day. Kids, laundry, cooking, cleaning, doctors for all of us, endless errands. My legs take me everywhere. When every step hurts, every movement of each tiny muscle felt with pain, I feel my lack of independence, I feel scared for the future, and I feel bad for everyone in my life who needs to deal with it as well.

What am I going to do? Consults, decisions about surgery (again).

Just a few days in the life.