A non-soothing prose

Upheaval.
Quiet and dark, throwing up in the throes of migraines.
Three days and three nights each... twice, two weeks apart.
No medicines to control them, ride it out.
Ride it out, ride it out.
Feeling that it will Never End.
Desperation.
Quiet and dark, but not peaceful.

A life of discomfort and pain.
The occasional day of fevers and flu-like symptoms.
No answers, ride it out.
Sleep on it, either it will get better or worse, but avoid going to the doctor.
Except sleep... it's as elusive as a day without pain. It just doesn't happen.

Did I say avoid going to doctors?
In the meantime I am driving all over the country to find help.
Yes, I do see doctors, many of them.
Too many. It's exhausting.
I'm searching for relief.

Natural therapies are slow and intangible at this stage.
But I am doing them. Homeopathy.. so far isn't helping.
It's going to take a while, I am patient.
The promise is that my body will learn how to heal itself.
But there is so much damage.
Osteopathy is infrequent, the practitioner of vacation recently.(but I will go to Jerusalem and see him on Wednesday)

Vocal rehabilitation every Sunday morning, also slow, no noticeable progress.
Lots of traveling, lots of hoping.

I am either at a doctor,
or therapist of some sort,
or at home suffering, or exhausted.

Living with pain alters some part of the brain, I'm quite sure.
I take no pain medicines, my body having rejected many of them over these 10 years.
Even when I'm not in pain (I can be in pain but not suffering)
I am down... depressed.
I don't have the answers why, but as I said,
Living with pain alters some part of the brain.

You see me, I look fine, healthy, happy to see you.
That's also true.
Short lived, though.

My oldest son graduated from high school, got his drivers licence.
My other three kids, finished for the year.
Transitions.
I need my quiet, it is challenged now.
More clothes to wash, kitchen with constant crumbs, sandwich toaster always out, tomato sauce splattered all over the stove.
Rice burned at the bottom of my favorite pot.
I want to scream, but I lost my voice.
I lost my scream voice.
I quietly state my standards.

The kids are older, more independent, but in transition.
I'm *that* mother that doesn't control their cell phone/computer usage enough.
Daughter texts for too many hours.
Sons play games endlessly.
I don't have the strength to entertain them otherwise, or to stand up to opposition.

This is life.
This is life after NF... the week that changed EVERYTHING.
Every cell known and unknown to man was changed in and around my life.
I just want to reclaim those cells. I keep trying.
But they are scattered in hospital rooms and hallways.

.

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.

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.

Not in a good space after an Epic migraine. Soldiering on anyway.

All I want is stability. Life is so crazy, and I am so tired of being in the world of the not-well.
At the moment I am sitting in a hallway which I have sat in, wasting time, all too often. It is the hallway where people wait to prove they need disability benefits, specifically for walking problems. It's a specific hallway, a specific disability. I'm here to prove again that I am worthy of receiving money from the state for having limited walking issues. I hate all this. I'd gladly give up the disability payments, the handicapped parking tag, everything, just to get a normal life back. I may not be back in time to take Azriel to basketball practice, the appointments for people waiting in this hallway are already an hour behind.

~~~~~~~~~~~~~~~~~~~~

I had to order him a cab for him to get to basketball. He's 10, told me he was scared to ride alone in a cab. I told him to call me and we'd talk the whole way he was in the cab. He did. I did. He got there.

I had my disability hearing. The doctor there had me lie on the exam table, he literally grabbed my legs, one by one, and threw them around to see if they work. I yelped, gasped in a breath. Now I'm in pain. Thanks, dude.

There is so much going on. I am so stressed out. I never know when a horrendous migraine is going to take over my brain. Like, take Friday night, for example... (5 days ago).

I felt that pain behind my eyes when I woke up on Friday. I knew I was "at risk".
But there is no medicine I can take to stave it off, I knew, like watching two cars getting into an accident, that it was going to happen, and there was nothing I could do about it. I prayed.
But like those two speeding cars you are helpless to stop from ramming into each other, the inevitable happened; a huge migraine. No medicines I can take. Total head-in-a-vice.

I finished making the kinoa stuffed zucchini for Shabbat, and an awesome gluten-free chocolate cake with white chocolate /banana/ whiskey frosting for Robert's birthday. It was outrageously delicious!

I said to Robert I'm going to need the IV of steroids at the hospital. This was about 5pm on Friday. We were thinking about asking a friend to take me to the ER because the kids were alone, and Shabbat cooking was in high gear. Robert called a friend or two, didn't get anyone available, then I told him to forget it, I made a plan. I'd drug myself to sleep with sleeping pills and Zanax, sleep it off until the next day. I did NOT want to go to the hospital. I hate that place.

OK, he called it off.

I took the pills and Cannabis oil, and waited it out in a darkened room, moaning in pain.

The migraine intensified so much that I was yelling in pain. This was two hours after medicating myself. It was 50 on a pain scale of 1 to 10.

Robert took me to the ER.

Before I got my IV cocktail, I actually passed out. I don't remember it, but Robert told me. I was writhing in pain on the hospital gurney in the ER, clutching Robert's hand, and at some point Robert said my hand went limp in his, and it got quiet. I passed out from pain. For the third time in my life. First one was the night I went back to the hospital in pain, four days after the original hernia surgery. Second time was when I had the cellulitis 4 months after NF. Now I passed out from a migraine. It's *that* bad.

I got the steroid/nerve relaxer IV cocktail, and the migraine subsided. Pain level went from a 50 back to a 5 or 6. I was grateful. (not sure if the little Beduin nurse who inserted my IV lock was so grateful when she could barely get it in; I couldn't stay still because of the pain. Foul language may have flown out of me...).

We went home. The guest we had invited for Shabbat dinner was just leaving. Turns out he came over, had Shabbat dinner with the kids, and he was just leaving when we returned. Life is so strange sometimes. But I was glad he was there with the kids. Really glad, actually.

Shabbat day (Saturday) I slept in the morning, and we had guests for the afternoon. It was a heat wave- 105 fahrenheit. Our friends stayed all day; it was their last day in Israel for at least two years, we wanted to squeeze all the togetherness we could with each other before they leave. My 10 year old, Azriel, is very close with the children in that family, so we drew out our time together as much as possible.

But I was not in great shape, I gotta say. I have to be more careful. I really needed to rest after the insanity of the night before, but I pushed myself. I am so much about connection with people, it is hard for me to even hear my own needs sometimes, until they scream at me.

The one thing that kept another migraine from blooming was that I was still on the steroids. There was a migraine in my head, but it didn't bloom because of the steroids. I don't know how else to explain it. That is exactly what it felt like.

I am on the steroids all this week, by pills. I am tapering off from getting the huge dose on Friday night. What happens when I am off them? Only Gd knows.

I am waiting for a date for an MRI scan. It is now in the system as "immediate action necessary", but I don't have a date yet. We are going to the states July third, I really hope to have the scan before then. My neurologist says he can't continue with a treatment plan until he sees an MRI. I feel this is the first time he dropped the ball... he's really been excellent for me. But he didn't order scans early on, and now I have weaned off all the headache medicines, and the migraines are in full force, and I have no medicines to take and no treatment plan. The ER is the treatment plan. It sucks.

Meanwhile, I have four kids to care for. Each one of them is a world in his/her own, and I am their mother. And I'm not even referring to the tip of the iceberg of cooking and cleaning and laundry. That's nothing. I have three teens and a 10 year old. Dov (17.5 yrs old) is knee-deep in matriculation exams and is stressed out, Ya'akov (16) is switching schools and is struggling on a daily basis with life. Shifra... Shifra is 13. Need I say more? Ten hours of ballet a week, school work, heart-to-heart talks on a regular basis, problems with friends, clothes, contact lenses, braces.
Azriel is my easiest kid... I deserve one, don't I? :)

There is seemingly no end to the medical paperwork we need to fax here and there on a daily basis. Referrals for the two MRI's I need: one is my yearly left hip MRI for the PVNS follow-up (coming up in a few weeks), the other is my head/brain. I need paperwork for those. I need to fax receipts from the doctors I see privately to our private insurance if we are to get reimbursed. But, since those receipts were lost, I had to go to the clinic today and get them to reprint them and I had to physically go to the doctor to have him sign them and stamp his rubber stamp on it. And the phone calls.... constantly organizing things with phone calls. I know you all have to do that, too, but today it is just all too much for me.

BUT......

I paid for a series of ten massages from my favorite masseuse... I hadn't gotten a real therapeutic massage in many years. So, doctor's orders, I called her and signed up. I've had two already. This woman is so strong, and MAGICAL. She thought I was calling to pay for ten massages for Ya'akov; we did that for him in the past because his tics from Tourette's make his body very tense. I told her they were for *me*... that felt good. And feels good.

And I still did Tai Chi this morning.
And I plan on going to the gym tomorrow.
And I am taking care of my friend's 6-year-old daughter all afternoon tomorrow.

~~~~~~~~~~~~~~~~~~~~~~

I saw my neighbor today and she asked me if I am bored not working. She said she is so bored at home with her 1 year old, she can't stand it. I was literally tongue-tied for what to say to her. We've known each other for 15 years... I told her I'd do anything to be healthy and be at home with my baby.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I'm getting lost

Wow, things are really tough and confusing these days. It's like picking petals off a forget-me-not daisy... I'm healthy, I'm healthy not, I'm healthy, I'm healthy not....

For me to feel too weak and dizzy/light-headed to go to our community Purim feast, missing it for the first time *ever*, something is really wrong. I just don't know what. I also missed the reading of the "Megillat Esther" for and by women, which I go to every year. This is *not* me.

Symptoms:

recent ones:
incredible weakness- uncharacteristic of me
dizzy/light-headed
decreased appetite

ongoing unsolved issues:
increased migraines over many months (about 5 a week now)
a chronic cough and chronic sore throat for three months

My recent blood tests are normal.

I feel that I am going crazy. Because I have had all the health problems I've had, this stuff could mean to me that something is seriously wrong with my health. The going crazy part is that nothing wrong can be pinpointed. Although I haven't done much in the way of diagnostic tests, just a few blood tests.
I don't want to go to a doctor to investigate without obvious clues. And which doctor? And what is the definition of "obvious clues"?

My GP: she will do obvious; blood tests and send me to someone else. Fairly useless.
Neurologist: he will focus on the migraines, sleeping problems, sleeping pill issues
Vitamin doctor- focus on adding more things to a vitamin/nutrient regimen

Then there are all the specialists, "non-conventional" medicine, (all the "-ists": reflexologists, accupuncturists, nutritionists, naturapaths (I know that's not an -ist...), it's a never ending list) valuable in their own specialty, but for me one big blur of "I can help you to feel better". They all have their own focus, and I generally don't go to any of them. You could literally go broke finding alternative specialties that help, maybe, for a while. It's not just the money, it's an outlook... go to another specialist and they know the tricks to help your life. I think that is why I haven't followed up much on these symptoms except for Dr. Litman, and I'm not sure if that is right for me, either. I can't stand putting stock in doctors. And none of the non-conventional stuff is covered by insurance, and it is all insanely expensive.

Thing is, I know how I feel when I am well, and this isn't it.

In short, there are a zillion ways to look at health issues. I have been to many specialists, and they all have something to add to health, but I am left with a question mark. I don't know what to do or who to go to. That's why I haven't gone to anyone. Well, except Dr. Litman the orthomolecular doctor (vitamin/nutrient supplements). I'm not even sure if what I am experiencing has to do with some of the stuff he has me on....

A few weeks ago Dr. Litman recommended that I take huge amounts of vitamin A in order to knock out the cough that I've had for three months. He said that it is highly effective against these coughs that seem to be going around the country this winter. So, OK, I did it. It was supposed to be for one week, a really high dose (50,000 units a day). Problem is that I wasn't really counting the days... I wound up taking it for two weeks instead of one. It is toxic at those levels. I started feeling really awful... not sick, but just not right. My head felt all cottony, and I was constantly dizzy. It was Robert who thought to ask if I have finished the vitamin A or not. Oops... I was slowly poisoning myself. Not a good idea. Good thing is that when you stop taking it, the symptoms go away. I'm much better now. There were a few days there, though, that I was really not good, and couldn't pinpoint what was going on. It was so bad that I had to go to bed all Shabbat two weeks ago. That's scary.
But, it was because of my not following directions strictly.

Those feelings went away a few days after stopping the high doses of vit A. Then the symptoms came back, like now, even though I'm not taking the extra vitamin A anymore. I am dizzy, light-headed, weak, fatigued. Chronic cough, chronic sore throat (which is very sore today).

It is so confusing. Am I healthy or not? I know it's not that black-and-white, especially not for me with my background. I am waiting this out because I don't want to go to doctors for something not clear or specific.

It's getting very depressing. I need to do something and I don't know what to do.
Of course I wonder if I am getting a brain tumor, or diabetes... we all jump to the scary stuff.

I am lost and confused, and not well, and don't know why.

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.