Sunday, November 27, 2016

The wait for a diagnosis

Just popping in to say that I haven't been able to write recently. Haven't been able to play horn, or write my book, either. Having a rough time physically. I don't feel like getting into all the nitty gritty, but we are waiting on CT scan results to hopefully cast some light on what is happening in my body that is causing me pain and discomfort. And low-grade fevers.



This is a time period that could take a while, trying to get a diagnosis. If the scan comes back with no findings, I'm going to take it to a radiologist-specialist to get a second opinion. I know that with my history of rare and unusual diseases, a second opinion is usually needed.


If the second opinion doesn't turn up a logical diagnosis, we may wind up going with the diagnosis of Endometriosis, which is not visible on any scans. There is no cure for it, either, except for laproscopic surgery. It'd be unusual to have this with an accompanying fever, but there are instances of that on the internet I've seen. Since the only "cure" is removal of the endometrium with laproscopic surgery, or wait for menopause, I'd be in a quandary. It is really laying me up, and often. Like, tremendous pain in my groin/thigh area on right side (been happening for well over a year, since before my last surgery last October), and the almost-daily low-grade fever is a killer. I can't take analgesics very frequently, so, yeah... quandary. But, we're not there yet.

I may be quiet here on my blog until I get a diagnosis. I am really just trying to make it through my days. Having said that, I *am* making it through most days. I am also taking care of my friend's 6-year-old daughter (my friend is struggling with very difficult health problems, much harder than mine. Gives me perspective) on a pretty regular basis. She sleeps over here at least once a week. I push myself when I can for her. Last week, though, she got to school quite late in the morning because I just could not get up. My head was a fog after a difficult night's sleep, and Robert drove everyone to school. My kids' schools are on the total opposite side of town than her school, so unless I get up and we drive both cars to get kids to school, someone will be late. It was Tessa (my friend's daughter). Robert wrote her a note, not a huge deal, but I can't over commit to take care of her when my own health isn't reliable. Robert & I are a team in managing anyone in our care, and he does come through also regarding Tessa, but it's not at all ideal if I am not physically there for her whenever she is awake. She depends on me, and is quite attached to me (as I am to her, as well).

Life is complicated.

I am mainly working on myself regarding having gratitude to Hashem for everything in our lives. When I can focus on gratitude, my heart is full. Let's all do that work- gratitude... it makes such a huge difference in life. I redirect my focus there as much as possible.
(oh, and guess what?? I am totally *off* the Lamictal. I took it for NINE years. It's out of my system. Gratitude.)

Sunday, November 13, 2016

Yearning to make goals

It felt like I was wandering in the desert for 40 years (or perhaps 9), and had arrived home when I picked up my horn to play for the first time last week. It was so incredible, I almost don't have words for it. Picture two pieces of inert material being connected finally to complete a circuit; electricity being produced from what was inert. My two arms holding the horn, holding the metal, the mouthpiece put to my lips for the fist time in so many years, the circuit was closed, energy flowed. It was like getting a hit of Oxytocin, really. And playing... talk about muscle memory. My hands and my lips knew it all, knew where to find the notes, how to string it all together. My fingers literally knew the music before I thought about it, they just did what they know to do. I was in **heaven**. That first touch of the mouthpiece to my lips came with a palpable feeling of relief, "Baruch Hashem" uttered under my breath.



Then again two days later... played for a long time, with no music in front of me yet. Just tones, scales, stylistic techniques I dusted off, and excerpts from concertos and symphonies. I hit the top of my range, and the bottom, and everything in between. Huge Oxytocin hit- the love hormone. Making me want more.

Last night, Saturday night, with a low-grade fever, I pushed through feeling blah and opened up my horn case again. This time all my kids were home to express their surprise and happiness to see me playing. Ya'akov took a video. He said "in case you die"... thanks, buddy.

I let myself fantasize about playing with an orchestra again, or even just some chamber music. My yearning has been much more awakened, I want it more than ever. That is one of the reasons I have not played for so long, it hurts too much to not play music with other people.

Today I couldn't get up in the morning. Endometriosis could be the culprit, or scar tissue adhesions from the multiple surgeries could cause it, but quite regularly this happens to me (few times a month). Profound exhaustion straight from the morning, bending-over pain in my gut, on the right side. The only way to diagnose either of those conditions is with a laproscopic surgery, which I *don't* intend on doing. A while ago, my spiritual healer's "bio-tensor" machine diagnosed that I had endometriosis. Who knows. Not much to be done about it. Point is, it's been hard to make it through the day today. Which brings me to my point.... disappointment. I never had any of this stuff before I got sick. Only rarely had migraines.

I'm one step away from totally being off Lamictal... one more dose (2.5 mg) to cut, a few weeks of unpleasant withdrawal from that, and I'm done. That'll be a milestone.

What lead me to taking out my horn last week for the first time was meeting with my previous therapist, Lily. She encouraged me that yearning is good. It means we are alive. I also met with my spiritual healer, Miriam Maslin later in the week. I got the internal boost that I needed to surge forward, and to trust in Gd, and be **grateful** (to Gd).

So yes, I am grateful. Grateful that I can still play horn at all. Grateful that there may be a glimmer of hope for me to play in an ensemble again. I just have to keep grabbing onto that glimmer of hope, and keep being grateful.

There is a sentence that's been in my head for many years- "every time I make goals, I get sick, or I need another surgery".
That sentence does not belong in my head anymore. I choose to wipe it out.
I am also, however, not making goals. But I yearn to.

Wednesday, November 2, 2016

Faking it

I am faking it. Faking at life. You see me, you ask if I am better from the headaches, I say "yes, baruch Hashem", and it's somewhat true. I am still getting headaches from the spinal tap, in the evenings, and my lower back still hurts where the test was done. But I won't say that. I'll just say, "yes, I'm over the worst of it. I was in bed for two weeks, but thank Gd it's passed."

That's partially true.

But the big picture? I don't know how much more I can take of strange, painful, unusual medical events happening to me on a regular basis. I mean, what's the deal?



I'm tired. I'm *exhausted*. I am having a hard time getting "up" again, in the big sense of getting up after another medical throw-down. I am having a harder and harder time justifying that I need to take care of myself, try to get to the gym, cook healthy foods. I have been doing things since the headaches went away, but it is a constant inner dialogue to push, to do, to go, to accomplish. It is physically and mentally exhausting to be constantly behind the 8-ball, so to speak. I want to stay in pajamas all day and not venture out. I feel beaten down, my spirit chewed up.

I wish I had a spiritual counselor who could help me try to make sense of my life. I don't understand. I am losing my drive, my love of life.
I used to have a rav who I would have talked to about this stuff, but he is no longer with us... (Ayelet, we miss him so much. Many times his name comes up, may his memory always be blessed).

Medical problems consume- as in swallow up and burn- any energy or life force that a person used to have. If it weren't for my kids, I'd be somewhere in nowhere land.

I constantly feel that I take two steps forward and three steps back.
Health is **Everything**.

Wednesday, October 26, 2016

This Is Spinal Tap.

Since the last time I wrote about that "thunderclap" headache........

I am lying flat in bed with no other options. Because of that I can't write a lot (bad angle for the laptop and my head), but I'll try to give you a taste of what is going on here.

Since last Tuesday, October 18th, I have not had a break in headaches. At all. Not one minute. And many times it's worse than it is now (because I am trying to lie flat, which is when it feels the best, but still hurts).

Friday I went to the emergency room. The headache was so bad, and ongoing since Tuesday. It was by no means a migraine, though, it felt different than my migraines. We looked on line (Dr. Google), and there was talk of a possible hemmorage with the way the headache on Tuesday came about. There was talk about mortality; that people can die from this. The only way to rule out that particular hemmorage was to have a special CT (angio), and a spinal tap. It got scary, so I went to the ER.

I was there for t h i r t e e n  hours. Bright lights, tremendous noise, lots of sick people moaning, vomiting, talking loudly, yelling. It was.... yeah, not fun. I was alone for almost all of the time, except for a visit from a good friend for a few hours in there. That was good, thanks, BD!!

It's a long time, though.

Thankfully the ER doc was on the ball with what I was telling him about how the headache came on and it's symptoms, and knew immediately what tests to order and what we were looking for.

Anyway, eventually they got the CT done, then they did the spinal tap. I could give you an account of how things really went down there in the ER, but I literally cannot be in this position typing for very long. Suffice it to say that I was scared out of my wits to do a spinal tap; Robert had one a long time ago when he had meningitis, and I saw (and heard) him suffering from the test itself, and the lasting after-effects. During the whole procedure, I was praying to Hashem to guide the surgeon's hand (local anesthesia), and please save me from bad side effects, please be with me, this is my time of need, I'm scared, please guide the neurologist's hand, and so on....

Well, we never know how our prayers get answered. I may have been spared something much worse than what I am suffering with now, but this is what is going on:

First of all, the tests were Negative for the big bad hemmorage. Thank Gd.

I don't know which part of this picture is the primary headache, but what I have now seems to be spinal tap after-effects.

The main one being that I cannot stand up, or even sit (especially not sit) for more than about 15 or 20 mins. At all. A huge headache starts to take over my entire head, and a solid block of steel pain invades my neck, and I am desperate to lie down. Only lying down can give me relief. But not lying down on pillows with my head at an angle... down. As in flat. Try drinking and eating in that position. And the relief it delivers is not total. I still have a headache 24/7. For a week. Now. Always. When I wake in the night to use the bathroom, it hits me like a lightening bolt, even though I stand up slowly. I reluctantly wake in the morning, knowing that I have to deal with this reality again for a day.

I honestly don't know how I'm going to do life in my coming days/weeks.... obviously I can't drive. How is Azriel going to get home from school? Shifra has rehearsals with the show she is in, "Annie". I also have certain responsibilities to my friend's 6-year-old daughter. My friend is sicker than me. Life is complicated.

How am I going to stand in the kitchen enough to make dinners, salads, laundry, anything?

OK, One Day At A Time.
This will heal. I will heal. The spinal tap effects will heal. They are normal occurrences. People on the internet say, however, that it can take from two weeks to six weeks to totally clear up.

I don't know how long.
I have to just rest and give my body a chance to get better. The spinal fluid has to be replaced from where it was taken, and that takes time. That is what causes the headaches while standing upright.

I won't get into any more details. I need to go to sleep. I've been a bit fevery the whole time, too.
Please body, get strong, heal, return to me the gift of movement. I'll be patient. I'll try my hardest to be patient.

Wednesday, October 19, 2016

A bizarre head injury

Still working on withdrawal from Lamictal (down to 5mg/day, down from 150). Things had been going pretty smoothly, relatively speaking. I had a *great* holiday of Succot with beloved friends, all my kids were home, and I was able to really enjoy myself without much pain or usual discomforts.

Then yesterday, out of nowhere, I was exerting myself physically, maybe a tad more than usual, but not crazy, and I got this intense pummelling headache at the bottom of my skull, in the back. It took about 15 seconds to come on strong, and it was extreme pain. Like being hit in the back of the head with a bat. Took about a half hour or 45 mins to go away after I stopped doing what I was doing. But ever since then, I've had a dull headache that makes me feel incredibly fatigued. It was all day yesterday, and so far all day today. I went to sleep with it last night and woke up with it this morning. I've been taking Advil for it, which, for me, could be problematic because of the migraine/analgesic issues I have. I don't want to set myself up for rebound migraines by getting onto daily Advil, Tylenol, or other analgesics. This is kind of crazy, right? I looked it up on Google (of course), and I think this is what is happening:

http://www.apexllc.org/articles/exertion-headaches/

It discusses three stages of exertion headaches, the first stage is when the exertion headache happens, the second stage can be daily, fatiguing headaches for up to two weeks, the third stage is return to exertion, but that could take up to two months, depending on the quality of rest the person has during recovery. Seriously? Rest for a long time? This is insane. Some people talk about the exertion headache being exactly where mine was; bottom of the skull (but my neck was and is fine). I'd never in my life felt that sort of intense, immediate pain there, and I've exerted myself, even recently, at the gym and other stuff, much more than what I was doing yesterday.

Again, this gets filed under the story of My Life since NF:

What Are The Chances?!?!?!?!?!?