Tuesday, October 25, 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:


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?!?!?!?!?!?

Monday, October 10, 2016

Animosity comes to visit for Yom Kippur... coincidence?

It flares up from time to time, this feeling of animosity toward the surgeon.
It flares up when my quality of life is disrupted more than the amount I have grown accustomed to.

One day before Yom Kippur,
when we are supposed to be careful about our thoughts and words,
I'm feeling anger.
Hostility, resentment, scorn, antagonism, bitterness.

These feelings really aren't part of my life any more. I shed them long ago.

But they come back, in the realm of my medical issues, when I am suffering because of his mistakes.

I remember one of those hospital days, when I had NF, I told him I can't feel a certain part of my body. He looked down to the floor, casting an embarrassed air, and said "the whole area was involved".

Involved. Indeed it was. At the time, I had no idea what was in store.

Lymphedema has gotten really bad. Even the pressure garment is not helping.
Help is on the way, but not until Oct 25th, that was the earliest appointment I could get with my lymphatic draining lady from years past. Nobody does it privately, I have a very rare type (of course).

I just had a two/three day flu. Fever, chills, joint pains, headache. Lots of people have gotten it.
The night I was shivering with fever, though, when different things in my gut were hurting, it got really scary. We know bad infections here. I've been through hell. I know what it looks like beforehand, too. We get more scared than most people. (I call it the infection ghost)

I did go to the doctor the next day. She gave me referral to the ER, just in case I needed it. She wasn't sure, either. If things get worse, go. If not, then just get better.
Thankfully I got to throw the referral away today.

I still have one spot that hurts way too much. I couldn't even touch it the night my fever spiked, it hurt like it was on fire. That particular spot has hurt on and off for over a year, and we don't know what it is. We may never know.

So, with tomorrow being Yom Kippur, how do I sum this up?
I can't.
Life is messy. Not everything can be contained in a pithy statement or two.
I'll just keep on working on myself and doing my best to take care of myself and others.

May everyone have a Yom Kippur filled with sincere dialogue with The Creator, and have the strength needed to forgive those who have made a mess in our lives... and to forgive ourselves.

Wednesday, October 5, 2016

Rosh Hashana 5777. About shofar, gratitude, and optimism.

It's that time of year! The high holidays are upon us. We just ended Rosh Hashana here in the holy land, and it was lovely.

The calling of the shofar was loud and clear: It broke into my praying saying to me "wake up", it said "time to cry", it said "break", it said "come together with tremendous strength", it said "LISTEN", it told me that we need to come together as a nation. The shofar blows are sometimes long, sometimes in long-ish broken sets, sometimes in short broken sets, and a few very long. God has many, many ways of getting our attention. In these days of ADD and whatnot, we need all the help we can get!!

I prayed a lot for life itself. I prayed for my husband's life, for my children's lives, and for my father. I entertained memories of my mother, daydreaming in my seat there in shul. I remembered the smell of her perfume when she got dressed up for synagogue on the holidays.

I prayed for the life of my friend who is fighting tremendous physical ailments, and is very sick. I prayed for her daughter. I prayed for my own strength of body and soul to be there for both of them.

Lots of the time I was just talking to Gd. I was in dialogue.
The shofar was at once a huge call for our nation to be strong in unity, and also it sometimes sounded like Gd crying for all that we are dealing with down here.

I feel that us Kleins are on a good path as the year starts out. The children are all in good places physically and emotionally.

I am optimistic that my personal path to health is also getting easier, with the help of Gd.
A little rundown of my varying situations would go like this:

  • Steadily going off Lamictal. It has been very challenging at times (which is why I have written less recently, the withdrawal from this medicine is really nasty), but I'm getting there. I was on 150 mg's, now down to 10... but many websites say the last 10 are the hardest. I've been on it for nine years.
  • lymph edema is unfortunately back with a vengeance. The pressure garment is no longer helpful. It's very sore and swollen where the lymph nodes were removed because of NF. I have to go back to lymphatic draining sessions. On the one hand, I know that the treatments will help, I've done them on and off over the years since I've had NF. On the other hand, I am not looking forward to them because it eats so much time from my day. Going to the physical therapy building, finding parking, a 50-minute session, driving home again (or to wherever), it is a two hour affair when all is said and done. Yet another reason I cannot work.
  • headaches still about twice a week, but can be treated with Excedrin or Advil and it usually works.
  • throat click problem still there and still very bothersome, I just don't write about it because it looks like there may be nothing that can be done about it. (this is the complication after having last year's surgery, the intubation tube caused a dislocation of something minuscule in my throat and I get a click in my head, which is palpable to anyone who puts their finger there, each and every swallow). I went to a specialist a few weeks ago, and he suggest another specialist who has a months-long appointment list. I took an appointment with specialist #2, but it's in March. Whatever. It's a big annoyance, but since it's not dangerous, and doesn't cause pain, it doesn't get priority.
  • hips functioning well, very minimal pain usually.
  • I need a knee MRI, praying for no PVNS.
  • tingling in right leg, and numbness in right foot when I wake up in the morning. Have no idea of anything about what is causing it. I was hoping the surgery last year would take away the tingling, but it didn't.
  • Gapey hasn't been doing so well. That is the wound/skin graft/mesh site where I had NF. I have had a consistent pain nearby (above the site, in my upper belly), and I am thinking it may be a high hernia, hoping it's not an ulcer or something.
Anyway, overall that laundry list is much less serious than it used to be. I am very, very grateful for that.

Things are pretty good. I have so, so, so much to be grateful for.
My little guy, Azriel, just turned 11 last week. Dovie is almost 18 (O. M. G.), Ya'akov is 16, and Shifra is 13 (although she is always sure to tell her age as "almost 14".) They are the lights of my life, the blood that runs through my veins. And Robert, well, he is the glue of this family. The stronghold.

Thank you, Gd, for the gifts, and the lessons learned in the hardhsips.

May all my readers who are celebrating the Jewish new year have a year of health, strength, and an abundance of love.

(and may I finish my book this year! It is going well!!)

Sunday, September 18, 2016

Pain. It'll never end, it's just never going to end.

I find myself needing to *remember* to smile, to purposely uplift the gloom settling around me. Because, I am One Gloomy Me.

I have three friends battling cancer at the moment. Three. That number went up 150% in a few short weeks. I have one friend watching her mother deteriorate from Alzheimer's.

Disease is just one of the suckiest things on the entire planet.

I also just watched my mom deteriorate  and eventually pass away over the course of five years, bedridden. Lots of diseases in her past, not important to document them here.

I almost cannot bear it anymore, the disease, the illnesses, the lives changed forever because of disease. Once a person gets a diagnosis, their entire life's plans change course. Forever.

39 years old. That's how old I was when my dreams came to a screeching halt. Today, resentment is bubbling up to the surface. Resentment is really sadness in disguise.

I heard some beautiful horn playing on YouTube yesterday.... I want to play like that. I *can* play like that, if it weren't for disease. I hear those recordings, and I think to myself "tomorrow, yeah tomorrow, I'm going to pick up my horn and play again". Then disease strikes, and I don't do it. (lump in throat, tears welling) I miss it so much it makes my heart literally hurt. It hurts to listen to music.

In the meantime, thank Gd my kids are off to a good start to the school year. Ya'akov is in his third new school, let's pray this one understands him better. Everyone has their "thing", and they all seem to be adjusting.

Me... not so much.

Remember that surgery that I have been pretty quiet about because it was successful, almost a year ago? The one that fixed my right thigh joint? Well, it's hurting more and more, over the past month or so. It doesn't hurt as much as it did before the surgery last October, but the pain is gradually creeping back. I am still in the process of going off Lamictal, and my experience is that every time I go off a medicine my assorted problem areas flare up. But, the difference here is that Lamictal is not a pain medicine. That doesn't mean it's not effecting my pain, but only time will tell. I am currently on a dosage of 25mg a day, down from 150mg.
I just have a feeling that I'm going to need a hip replacement before that 5-10 year timeline my orthopedist gave me. Sometimes the idea of needing another surgery can put me into such a depression, such depth of despair, it is scary. But the pain... it's ramping up. I used to be able to bend (since I healed from the surgery), and now it's getting harder, more painful. I will not go on pain meds, my body can't take anymore. My soul can't, either. Can't take anymore surgery, pain meds, migraines, all of it.

I'm pissed at life, at Gd, at cancer, at medicines, at the cruelty randomness of disease.

(in my more spiritually grounded days, I would not be angry at Gd, and I would not use the word random. But, here we are. Ride this out with me, will ya?)

There are so many people who say "well, yes, if you do this and this, you will be much better! Or, if you have this or this attitude, you'll see everything around you change! Or, go to **this** special amazing doctor, he cures everyone, you must go to him/her". Or "I can recommend a diet that would help. Do you drink enough? Do you have good sleep habits? You need to go out to work, it'll get you out of the house and your prospective will change." and on and on and on and on.....

I've heard them all. ALL. Many times over. Well-meaning people, healthy people.
People who struggle with chronic illness don't say those things, because we know that there is no magic to getting your life back.

But it's not coming back. This is it. I can look forward to more pain, more surgeries, more migraines.

And my friends with cancer, I can't even go there. I just cry. I scream, also. And I help as much as I can.

I want to go do some "bucket list" things, because life is Too DAMN Short.
Not this year, though, I am in the mourning year for my mom. It's been two months now... Now I only think about her a few hundred times a day instead of 1000.

I'm constantly on the verge of tears.
Loosing my mom, having our house robbed (every day I am missing the things that were stolen), awful effects of weaning from medicines, hospitals, horrific migraines, increasing pain which looks like it's leading to a hip replacement, less than a year from fixing it. Possible PVNS in my knee. Beloved friends suffering. I CAN'T. I just can't. Robert is busy up to his eyeballs with work... three teaching jobs and home editing. He works so hard, partially because I CAN'T. The kids are constantly a handful, I have no air to breathe. I give and give and give, as much as I possibly can, and my tank is emptying out. I need a quiet vacation with my husband, no kids. Probably not so likely in the near future. The "state of the union" is suffering. How could it not?

Gotta end this now, Azriel needs to get picked up. Then a full afternoon of cooking, chopping salads, cleaning up, laundry, driving to and from activities. Oh, and making Turkish coffee and providing cold water for the workers who are painting our house at the moment.

Thank Gd for all the GOOD. But I'm not doing so great.