Strong and struggling

Sometimes I feel that something is Really Wrong. Other times I am so energized and able-bodied that I feel I can take on the world. And, when I feel those times, I do take on as much of the world as I possibly can. I've been working-out at the gym, and basically doing everything normal. There is that word again... it's a rather judgmental word, actually, right? I mean, nobody is normal. Only to *us*, "everyone else" is normal.

But since I've gone through much more, medically speaking, than most people, when I have ongoing symptoms, I have a tiny voice in the not-so-far-recesses of my psyche that something Big may be going on. Yet, I often choose to ignore it hoping it will go away. I have seen too many doctors, had too many surgeries, gotten too many diseases, and had too many scares to go dashing off to the doctor every time things are not quite right. Some may think quite the opposite- that I'd be the one to go dashing off to the doctor with every little symptom. But I am fed-up and jaded about doctors, and their tests. I've had enough surgeries, heavy medications, pain, infections, and rare diseases in the past eight years... it'll be nine soon... and the medical tests that go with that stuff, to last someone about 12 lifetimes. I am at the point that avoiding more conversations with doctors and more tests is my goal. To that goal, I am taking many vitamins and minerals (which I never used to do- I hate taking pills), trying to keep a good, balanced diet, working-out in a very healthy way, and trying my best to keep a good attitude about life.

But I gotta get to the bottom of what is going on with me.
I don't want to. I hate going to doctors, and I hate all the tests. Have I said that before? Ive been through too much. Today, while talking to Robert about my now-daily headaches starting first thing in the morning and lasting usually throughout the day, he asked me why I haven't seen my neurologist. My answer: I don't want to. He's an awesome person and doctor, I just don't want to chase him down to get in before my June appointment. I don't want to talk about problems and medications, go through tests. I know he will see me earlier- my history with him is that he will take me and give me a full consultation if he can, just when I pop my head into his office during his office hours. He was amazing during my withdrawal from Fentanyl. I just don't want to chase. I don't want to need anything medical. I am tired of it.

I need to get off the [eight years] of sleeping meds- I think that is a major cause of the headaches. I could be wrong, though, just my own theory. One of my doctors told me that the withdrawal from this sleeping pill (in the valuim family) may be worse than the withdrawal from the high doses of Fentanyl (morphine family) I was on for five years. I am so scared to make a real plan to start weaning from the sleeping pills. I'm actually terrified of it. And there isn't much I'm terrified of. I know that the times now that I have tried to cut down a teeny bit of a pill, I can't sleep. I've tried numerous times. My body *cannot* get into a deep sleep without the sleeping pill(s). It all started eight years ago when I had post-traumatic stress disorder (PTSD) and couldn't sleep at all, and was having horrific nightmares. A well-meaning psychiatrist put me on sleeping pills. I asked if I should take one on an SOS basis, and she said "no, you take one every night. That is the only way to get your body sleeping through the night again". And thus it began....

The past week, the first thing that goes into my digestive system in the morning is... Excedrin. I wake with a headache. Before this week, Excedrin and Zomig (my migraine medicine) have been part of my almost every day. My headaches are getting intolerable and more frequent.

That, along with two months of a consistent cough and sore throat, and I know I should be doing something about my health, but I don't want to. Don't worry, though, I will.

Remind me how is it that I question myself when it comes to the fact that I am not working at my careers?

Shabbat Shalom

Smaller big issues

"When I met you many years ago, you came to me with such huge issues, there was no room to talk about how you can get enough sleep, and the idea of sleeping unmedicated wasn't a possibility. We needed to keep you alive, walking, and safe. Look where you are now. Your last surgery was a total success. Your pain is all but gone. Now we can finally fine tune these other things which are hanging on from the really bad times".

...said by my general doctor (gp) today.

I went to her to deal with my cough. And to up my migraine medicine allowance monthly, and to share with her how my sleep is so messed up, my life feels un-anchored. She was so "pleased" to be dealing with the sleeping problems and migraines finally. She sees it as progress. I told her I am seeing the "vitamin doctor" again, who I had seen years back. The goal is to get off sleeping pills. I had blood tests done, and everything hormonally is fine, so that isn't the cause of my sleep problems. The cause is from eight years on sleeping pills. I pray that this doctor, the "orthomolecular" doc- Dr. Mel Litman can help me with this awful withdrawal from sleeping pills that has to happen. I already started a pretty intense regimen of vitamins and minerals (although I'm hating taking more pills).
He's also doing gentle cranial-sacral manipulation to hopefully guide the throat cartilage back into place.

One thing at a time, though.
Right now we have to deal with this crazy cough.

We're beginning the process to clarify what may be going on. We'll look at it from three angles, one at a time:
1. lung/chest x-ray (already scheduled for Tuesday)
2. if/when that is clear, we'll go onto the second theory, which I personally feel may be the problem... that it is related to the cartilage dislocation in my neck/throat area. Goes like this: when I saw the ENT at first, a few months ago, for the cartilage/swallow/throat click problem, he asked me if I was having any reflux or heartburn. I said no. I never get that. But, in the coming weeks, indeed some reflux did start developing, and the cough started getting increasingly intense.
My GP thinks that the cough may well be reflux, stemming from the cartilage problem, which may be the result of poor head positioning at my surgery four months ago.

Solution?
We'll try reflux medicine. If it works, we've found the problem (but not solved it until the cartilage is re-aligned).

3. If the reflux theory proves a dead end, she wants to do allergy testing and treatment to see if the cough is an allergy.

So there it is. We'll hopefully get to the bottom of this.

I loved my doc's optimism this morning. You don't get that much in our health system- optimism. Or rather, bolstering the patient, commending them on how far they've come in taking care of their health problems. I've known her for 6 or 7 years, I think. I switched to her after my NF, and first cellulitis episode which my previous doctor thought was nothing. Oh, no wait- actually, it was when he thought a little tumor in my thigh joint was nothing. That was it.....

Anyway, my doc now is not an alarmist at all. Cool as a cucumber no matter what I walk in and present to her. And there have been some *very un-cool* things over the past years, as you all well know.
This is the same doctor that gave me a standing ovation when I told her I am finally off the Fentanyl after five years.

So, operation "deal with bad cough" is underway. Let's hope it doesn't get complicated.
(this is almost parallel with operation "deal with sleep issues, wean off sleeping pills", which I find much scarier and intimidating. But unfortunately necessary at this point in life.)

living parallel

I've realized it's parallel... life. Not going in an upward direction, not heading for some point. If you are lucky, it doesn't go downward. It is parallel. Mine is, anyway. I thought I was heading for certain points... reclaiming my talents, etc. But I'm not. There is no high point to aim for. It's all parallel. There are high points in life, for sure. But we don't aim for them, they happen. They pop out of the parallel.

We (people who deal with chronic medical issues) watch the world go by, watch our kids grow up (at least, the lucky ones do), we do as much as we physically are able to do, but the goals just never seem graspable. I'm fairly sure I won't ever play in an orchestra again. That hurts my heart, but it is reality. And as far as returning to any other sort of normalcy, well, I think I have it the way I am ever going to have it, right now.

Yesterday in Tel Aviv, at my orthopedic surgeon, I got the "all clear". The healing is going well after surgery, and I can expect more, steady improvement over the course of the year. That is *good news*. My right thigh joint is on the right path. The pain is very minimal, and things are moving the way they are supposed to. I will get back to stability with regards to that leg. It will continue to get stronger, and then it will level out and no longer be a problem. Don't get me wrong, I am happy about this. It brings a "low" situation back to parallel.

Regarding other issues that NF (and Fentanyl) left me with:

Sleep problems. Big time. Awful sleep problems. Awful headaches. It started with the insomnia from the 10-month withdrawal period from Fentanyl, and hasn't gotten back on track. If I can sleep and wake up during regular hours, life will be parallel again.

Gapey: rashes and small infections on a fairly regular basis. I always wonder if this or that little painful nodule is the one that is going to lead me again to cellulitis. It hasn't recently, thankfully. That situation is a little lower than parallel. I am also always uncomfortable without the prosthetic pillow. I may have to start wearing it again, but that brings down other things about quality of life. We're looking for parallel here.

Also sub-parallel regarding gapey is that my bronchitis is back. The internal bleeding episode from last time (two weeks ago) has barely fully drained (there are still purple marks), and the pain is coming back again because of the coughing. That one clip inside gapey- the one of many- the one I feel strongest- is again getting irritated. I am taking cough medicine to try to keep on top of not coughing, but I am still coughing.... hard. Kept me up last night, made a migraine get harder. That was after I returned from Tel Aviv. Gapey hurt so much. So yes, it is good that my right thigh joint healed well, I am eternally grateful, and I mean that with all my heart and soul. I don't take anything for granted. But the rest, the fallout from NF, I just try to maintain parallel. I am a very strong woman, and can handle A Lot. And I fight these things that hold me back because of the deck of cards that I was dealt.

But maybe fighting isn't what we are here to do. Maybe just parallel is OK.

I recently changed the subtitle of the blog- I doubt anyone noticed, except the person who encouraged me to take his suggestion. Instead of "Rebuilding my life...", it's now "Building my life..."
That is a subtle, but powerful change. I realize I am no longer trying to piece together what was. I have to let go of that. I am just living parallel after what I could build out of the rubble. I built, it got built, and now I try to maintain parallel. Does that make any sense?

I have to go get more cough medicine, and Excedrin for the impending headache. And put more antibiotic cream on my skin grafts, hoping that the raw, thin skin won't get angrier.

I am strong, I have what it takes to live a long, good life. Parallel will be just fine. I guess.

Compartments

My world these days seems fragmented; compartmentalized. I have two different doctors for my two different thigh joint issues.

I go into the hospital (Soroka here in Be'er Sheva) on a daily basis to support my friend who is going on her third month there. I see her doctor often. That would be no big deal if he wasn't the same surgeon of my own NF history, but he is. I'm compartmentalizing that. No other way to deal with it. So, I deal.

I leave the hospital world behind me when I walk out of there, but things ruminate in my head when I am with my children. Still, I work on closing that door when I am not in that world.

Yesterday the compartments overlapped a bit, and it was weird. what happened was that since Shifra's new junior high school is right across the street from the hospital, and since she was finished early because it is the first week of school, I told her to come meet me in the hospital. She knows my friend and also wanted to see her. On our way into my friend's room, Shifra and I holding hands, we ran into the surgeon in the hallway. He noted that she is not 4 years old anymore, comparing to the last time he saw her, when I had NF. Yeh, that was weird. Our visit with my friend was fine, and Shifra was fine with the "sick world". For better or for worse, it is not foreign to her, obviously (I think she may have "doula" running her veins, too). But then my friend started to have an attack of tremors from fever, and it got scary quickly, and Shifra needed to leave the room and wait for me outside. Then I called her doctor from my phone... she wanted him to know she was in trouble [again] and that I have to leave to go pick up my own kids, and could he be with her because I didn't want to leave her alone..... my compartments got all tangled up. I called him from my phone. It is just beyond strange. I need to step back, it's too tangled. I need stronger compartments. I need stronger boundaries.

I want to start playing horn again. I am vividly dreaming about it. I need to structure time to do that.
I have my own complicated health things to take care of, which often means making phone calls and sending faxes and being organized. I need boundaries, to take care of myself and my family, and compartmentalize my friend's needs, but at the same time give to her when I am with her, with all my heart. Many hours have been spent in the hospital over the months. That is my choice. I am now beginning to see that it is going to be a long haul. I have many priorities, and I am readjusting my compartments.

OK, now a bit about my own health stuff; my "compartments", as it were.

Right leg: Monday. I had the MRA test privately, paid many thousands of shekels out of pocket. I didn't want to wait until December to get the test and schedule surgery. We are planning to bill our private insurance for it, and planning that they will pay. They say they pay for private MRI's, but not MRA's (arterial). We'll see about that.

It is an awful test. This is the second time I have done it on my right leg. First time was two years ago and it was awful then, too. It involves sticking a large needle with radioactive dye into the femoral artery, through the joint itself, in the groin. It hurts like hell. That is, until the Lidocaine (local anesthetic) takes effect. All this for the privilege of seeing what damage lurks in the arterial areas of the joint itself. Or something like that. Then, after the shot takes effect, the test is a regular MRI, in the white tube, with lots of jackhammering and pounding noises. My PTSD hates those noises.

I limped back into the car (Robert was with me, thankfully), and spent the rest of the day in bed, proverbially licking my wounds. Apologized to my friend that I couldn't see her in the afternoon. I had thought I could. Yeh, right.

Left leg: Tuesday. I went into Tel Aviv with my right thigh joint still aching, but not in acute pain. I stopped by my friend in the hospital in Be'er Sheva before I got on the train to Tel Aviv. She wanted ice pops, so I put those in the freezer for her and sat with her for only about 15 minutes before I had to go catch my train.

I got GOOD NEWS about my left thigh joint! Not only did the last MRI (in June) prove to be PVNS-free, but the fluid that had been around the joint for the past three years has mostly gone away. My doctor (orthopedic oncology) said he could have never imagined that three+ years after PVNS, and another surgery thereafter, that my joint would looks so clean. He said my MRI was pretty. Aw, gee, thanks, doc. ;)

My follow-ups at ortho-oncology used to be every three months. Then it went to every six months; the bi-annual MRI. Now, he said he doesn't need another MRI until next year. I've been sprung for a year! It's good news. Less traveling into Tel Aviv. fewer MRI's, more quality time for good life.
I told him I am planning the surgery for the right thigh joint, and he said he feels confident that I can depend on my left joint to carry the weight during healing the right one. That was also comforting. He said to listen to my body, and give lots of rests for my left leg after surgery- it still has scar tissue and will tire easily. I said "OK, boss".

Then as good fortune would have it, dear friends were in Ichilov the same day I was, with their daughter for a medical visit. We met up after our appointments and went out for sushi! It was such a treat to have a positive day at Ichilov and enjoy life together with my friends. Entirely memorable. :)

Now, as you can see, I took the morning off from going to Soroka, to my friend, so I can relax and write. I also will be starting to play horn soon. I gotta write about it first, though, right? :)

Now to sum up all these different compartments, I have one very important thing to say:

I am so happy to be off the Fentanyl.

I got my life back.

I feel active, alert, and

ALIVE.

I am positive that it is better to live with the level of pain that I have than to be doped up.

Thank you, Gd, for bringing me to this place in life.