Wednesday, February 3, 2016

Gapey the prize-fighter

Last week was a mess, this week is better.

OK, that's all you need.

Ha! Yeah, I'm so likely to not elaborate on those statements. :)

So, I think we left off last week with the bronchitis cough, when I thought I was splitting completely in half by coughing. I had gone to the urgent care clinic, and after a few x-rays I was told that my lungs are clear, and all the clips in gapey were OK. I left with a pretty good cough medicine. I was reassured that my skin grafts are fine, there is no internal bleeding (which is what I told them it felt like).

Well, guess what? I know this never happens to me, but... they were wrong.

The next day, pools of blood started showing up on gapey (like under-skin bruising). They got bigger and uglier as the day went on. The day after that, poor gapey looked like he just did a few rounds in the boxing ring. It hurt like knives were in me, and those skin grafts were angry.

I dragged myself to my regular doctor (GP). I had no other symptoms, and I pretty much knew that nothing could be done, but I wanted to know if my doctor thought it was still actively bleeding, or if we should be concerned. She said it looked like older blood, dark purple, and that it probably will start draining soon.

Next day shades of green and purple cascaded southward, indeed draining.

What a thing. It's still quite bruised now, but looking a little better each day. Still hurts, but calming down. So is my cough, thank the Good Lord. I now have a spot in gapey that easily gets irritated, and is fragile. I think it's the same place that hurt that first year after the mesh surgery, where the anchor clip is or something. Wah.

Well, I got through Shabbat, recovering. I even took a walk on Shabbat day to go visit a friend.

On Monday I returned to physical therapy after having not done anything for two weeks. I thought I'd be set back, because my leg was hurting more than it had been before I got sick.

I was pleasantly surprised... I didn't loose a lot of strength, and my physical therapist said things seem fine. I think my leg was hurting more also because of the pressure of coughing. It wracked my body.

And the most exciting news is that I finally got to the gym today! Still coughing a bit, gapey still fragile and a tad sore, but I took it easy. The gym was really great about giving me back the two weeks I wasn't there. They started my membership today, the actual first time I worked-out.

We're back in line with The Plan... with the help pf Gd.

I've done some gardening (before I got sick), did a bunch of weeding and pruning, and now am doing the day I planned... gym, then writing at the cafe near the gym. But next time it's gonna be my book. I just wanted to catch up on bogging first.

Yesterday I began going to a non-conventional medical doctor,
starting to deal with re-aligning my throat cartilage problem, helping my arthritis issues, dealing with sleeping problems that I've had since I weaned from the Fentanyl,
and the migraines.

There are so many layers of wellness between “I'm dying”, and “I'm doing well”. As long as we keep going in the right direction, real wellness can be achieved.

I've been at this for eight years. I can honestly say that now, (putting the bronchitis and gapey issues off to the side) I am the strongest I've been in the eight years, and in the least amount of pain since then as well.

For that, I am eternally, humbly grateful.

Tomorrow resuming Tai Chi. :)

Friday, January 29, 2016

Bronchitis... and gapey's opinion of it.

Who knew?
Who knew that me having a bronchitis cough would Hurt. So. Much.
Not hurt my chest... well, that, too, but that's no big deal. Chest muscles always hurt when you cough a lot. Nothing to write home about (or write a blog about).

But *this*... each cough is an experience in spasmodic pain, the likes of which I haven't experienced since the year I had the surgery that put the mesh in Gapey. That was a year of pain. It was the worst surgery I had to endure out of all of them. It was July 2010, and it was a horrifically painful surgery.

So it turns out that coughing, for about five days now, pretty intensively, makes a *lot* of pressure on gapey and the mesh, and I feel like I'm coming apart at the seams. I feel sharp stabbing pains (plural) in my lower left belly (skin grafts) with every cough. It was so bad the other day that I was sure I must have internal bleeding, or one of the pins which holds the mesh down got loose. It hurt that much.

So I went to an urgent care facility, being that I knew I needed an x-ray, and also that my regular doctor wasn't available.

They x-rayed my chest (to make sure my lungs were clear, and they are, BH) and my belly. The surgeon there said that all the pins are present and accounted for. That the pain I am feeling isn't dangerous, it's just pressure. He tried to convince me that the graft and mesh can hold up to the pressure of the coughing.

I hope he's right. I've had many coughs in my life, some really bad bronchitis, but I don't think I've had one this whole time since the mesh surgery. This is a whole new experience for me.

So the doc there gave me a good cough syrup, the goal being that I gotta stop coughing so the graft/mesh can mellow out. The syrup works ~a bit~. Maybe I get a few hours of cough-free time, but mostly the coughing persists, but perhaps less when I take the medicine.

I just have to wait this out. I don't have any fever, and my blood test at the clinic the other day was negative for infection, which is awesome.

We just are hoping that this pain goes away when the cough does. It hurts something fierce. I grasp my belly and double over when I cough. *Not* a pretty sight.

Let's pray that the mesh supporting my belly holds up to all the pressure, and that the damn cough goes away soon!!!!

(...and the rehabilitation of my right thigh surgery three months ago doesn't regress because I haven't done physical therapy or gym in a while.... I try to stretch and do some exercises, but my tolerance for pushing myself is pretty low these days.)

Tuesday, January 26, 2016

Flu. Bleh.

I jinxed it. I knew I shouldn't have written how things are getting back to normal! Who do I think I am trying to escape the view of the evil eye? ...getting back to a schedule.... yeah right.

I got this year's version of the winter flu. A lot of coughing, laryngitis, bits of fever here and there. Not fun at all. I know my immune system well enough to know it's going to kick the flu's butt, but it's gonna have to run it's course.

What's *really* not fun is having this swollen throat and cough with the click-clack of my throat cartilage problem. When I get better I am planning on going to a cranial-sacral therapist to try to relieve the misaligned cartilage problem. It is **really** annoying.

Another side effect of coughing so much?
Gapey is killing me. I really hope I didn't rip anything apart in there. It's a large patch of thin skin graft without any layers of fat. The stomach wall muscle can be seen through the skin, it's that thin. I am worried about the supporting mesh that is in there. Every time I cough it is an experience in muscle spasm pain on my left side. Not good. I pray it goes away when the cough does. If that gets damaged, I'm in trouble. (once, when I lived in the states, I dislocated a rib when I had bronchitis. I can *really* cough...)

Another worry is that since I have canceled my physiotherapy and cannot go to the gym, I am worried that my leg progress will regress. I am exhausted from being sick, and can't do my exercises... lets pray that the leg will continue on the exact path it needs for healing.

It's more painful these days, maybe because of all the cold rain we're having, who knows.

In general, well, yeah, that's about it. I am taking care of myself, and my kids are being very helpful. And Robert brought me chocolate. It is scientifically proven to help coughing!
Today I reached out to ask a friend for driving help, so I don't have to go out. Thanks, friend!! :)

Gonna go take another hit of cough syrup.
This, too shall pass.

Sunday, January 17, 2016

Sounds a lot like regular life, right?

It's been a while since I've posted, I know. I miss you! :)

If I don't post for a while, it is usually one of two things ... either black or white. Either sadness or euphoria (Billy Joel lyrics). Either sickness or health.

In this case, it's a combination. But overall, I am in a Good place, baruch Hashem.

Lots of good, mixed with some bad, and a few so-so's thrown in there for good measure. Sounds a lot like regular life, doesn't it? I think that's what is slowly happening, I am getting back to regular life. I am starting to make myself a schedule again, after not having any schedule for many years. I joined a gym, and have a plan for going to the gym combined with writing my book. The gym is in the huge mall near my house (boasting to be the biggest mall in Israel. I hate that mall, actually- far too much walking- if you are shopping- with escalators poorly placed for handicapped). The good thing is that I can park my car near the entrace with the escalators leading to the gym, do an hour work-out (mostly physical therapy, strength-type stuff), then go to one of the cafes in the mall (one is down the same escalator that leads to the gym), to set up my laptop and write. I find I write best in a cafe. Write my book, I mean. I can blog easily from my bed at home, but for book writing, the kind of concentration I need comes easier for me when I am not at home.

I feel really good about this plan. I have re-started writing my book, and it is going really well. I was stopped for about a year. It was a combination of the hardships of going off the Fentanyl, dealing with 10 months of narcotic withdrawal, and then this surgery I went through almost three months ago.

My book was also stopped at a point where I couldn't work out a good transition. I am now deep into chapter two (of 8), and I knew that I had to introduce the main theme, and it was too big for me. I couldn't think of a transition from the details of the story to the large theme the book is based on. The theme comes from a dream I had while I was in the coma. It took me a long time of sitting with it to realize how it will all fit together. A few weeks ago, I got an inspiration... one small sentence... that catapulted me into that transition. I wrote that sentence down at midnight on pen and paper, and that was all I needed. The right thought at the right time. Thanks, Hashem! :)

So, the plan is that there will be days of gym/writing, alternating with days of gardening. Last year, I couldn't do any gardening. Not only because of the above reasons, though. It was, what is known in Judaism as a sabbatical year (שנת שמיטה). It is a Torah mitzvah that is commanded of Jewish people when they live in Israel. Someone outside of Israel cannot observe this incredible mitzvah. It literally gives a sabbatical year to the land itself. One is commanded to not do any farming, plowing, gardening, planting or harvesting of any sort. The land of Israel must remain un-worked for a year. It is the year we give back what the land gives us. There are many laws and instructions on how to deal with produce during the sabbatical year. It is basically considered holy, and disposing of the produce or it's byproducts must be handled in a certain way. It's very cool, in my opinion. It brings holiness into our entire eating/shopping experiences. It is one of the things I adore about living here.
Anyway, I didn't do any real gardening, and now the garden(s) need help. I couldn't do it last year anyway with all I was going through physically, so Hashem let me also have time off to work on what was most important for me; going off Fentanyl, and having the surgery.

I look forward to gardening in the next few months. I've already planted a few new plants near our front door and I love seeing them each time I walk in and out. And I have more plans (and plants) brewing....

I hope my hips can handle the gardening. I feel I can do it. I'll keep you posted!

A few other things:

I have been free of lymph-edema since my surgery. The surgery made me stop wearing the pressure garment because the incisions were too sore. Then I saw that I wasn't swelling as much as I used to in the NF area, so I am keeping off the pressure garment! This is *huge*... I wore it for 7 years. It's tight and hot and restricting. I am liking not wearing it. At the same time, though, I am still not used to how clothes feel without my prosthetic pillow that the pressure garment has, which fills in Gapey. I can't put the pillow anywhere without the pressure garment having the pocket for the pillow (the garments are all custom made, of course.) So without the pressure garment, I have no prosthetic pillow. I'll get used to it. Or not. We'll see.

I am also trying to get used to my throat "click" issue. I hate it, truthfully. The most frustrating part is that it wakes me up sometimes in that light sleep time before you really fall asleep... it makes a sound in my head, and that mechanical click feeling when I am just swallowing my own saliva, and it jolts me out of light sleep. Not good. So far nobody has come up with a solution (apparently it is a dislocation of tiny cartilage), so here I am trying to get used to it. Apparently it's an extraordinarily rare occurrence from my head being in a bad position during my last surgery. *Of course*,'s me. Something strange and incredibly rare was bound to happen. (my cynicism showing through!) I (we) just could not have guessed what it would be. I keep saying to myself at least it isn't painful. This is the first complication I have experienced (of so many) that isn't painful. Gotta count your blessings when you can!

With this, I am going to go to sleep.
Now, if I write less frequently, you understand why. There are actually other reasons, too. Those have to do with supporting a few friends who are having medical crises at the moment. I won't get into the details here, but I choose to give my time to support friends as much as possible in their times of need. Those times can get very dark, dealing with medical crises. I Know. I hope my experiences can help others.

Have a good week to all!
May we have good news on all fronts, and strength to handle all life hands us.

Monday, January 4, 2016


We have new next-door neighbors. They are really very special people, with young kids. The cool thing is that one of the kids is a good friend of Azriel's in his 4th grade class! The two of them are are very excited.

We had them over for Shabbat lunch.
In our conversations getting to know each other, she told me about her extremely busy, productive life. She is in university, and working full time as an engineer. And five small kids at home. (I think she's at least 10 years younger than me, maybe more).

I told her my "before" getting sick life, and "after" life. I didn't actually go into any details of what happened to me, it wasn't a private enough setting. I just said I got sick 8 years ago, and have been through many surgeries and complications. I told her I'm not working at my careers now, for 8 years. She said "ah, so you're home". All-of-a-sudden I felt like a non-'go-getter', someone who gave up. I know that isn't the case, and I know she doesn't really know me or my family well at all yet. That's irrelevant. I told her that in reality, I'm not home so much. I have been granted the gift of being with my children in the afternoons, but many mornings I have to deal with all that it takes to organize and run a life of being a patient, and staying in as best shape as possible for my family (and self). I have many doctor appointments (which eat up TONS of time), tests, physiotherapy, and paperwork, just to keep myself in good working order. This is something that someone who has never had to deal with this sort of life could understand.  It is very individual, and that means lonely sometimes, and it takes a lot of belief in myself and inner strength in order to not feel inadequate in the presence of someone who is living a similar life to that which I had to leave. Meaning, society's view of what it means to be "productive". She told me she's dying for a vacation, or even a small break. I told her that she needs to take one whenever she sees a possible window of opportunity. What I didn't say, but was on the tip of my tongue, was that if we don't take a break when we need to, Gd will make us take one. I didn't want to scare her, though, or lay it on heavy. (she won't be reading my blog, they don't speak English).

In the meantime, life has been so heavy. Just so heavy. I have been to a few specialists about my throat problem, and it seems to be diagnosed as a "cricothyroid dislocation". That would explain the bump that happens every time I swallow, and the cut off higher range of my voice. Apparently it is not from the intubation tube, but rather my head being in a bad position for the 4 hours of my last surgery. What to do about it is still unknown. I am grateful that it isn't painful condition. That is a pure gift from Gd- a medical condition that is not painful. It's just that it is really disturbing my daily life.

I have to say, though, this specialist that I saw yesterday was as amazing as his friend was, the ENT who referred me to him. It was again like an hour consultation, and he didn't charge me *anything*. As "luck" would have it, an esteemed colleague called him while I was there with him. He took the opportunity to explain to her my case. She will now take my case, and she is the one who diagnosed it on the phone, just by hearing all the symptoms from the doc I was with. I don't yet know if there is a treatment plan. I pray there is, and that it is non-invasive. I am planning to go possibly to a "cranio-sacral" therapist, or... I'm not sure what else. I desperately want this problem resolved, it is really making me crazy.

The other heavy stuff in life:
One of my children is suffering in school, and things are so, so hard for him. I have a counselor in the picture who deals with placement of kids in the right schools for special education, and I pray she will be able to help us. It has been **very heavy** and hard on all of us.

My friend's cancer came back. This is the friend who was in a coma last summer when I was there with her almost every day. I am one of her "people"... she has no family here. She will need a lot of support. I can give it, but sometimes it is just so overwhelming.

My physical therapy is Hard. I know that is good, but it's so hard. Both my legs need strengthening, and I am getting stronger slowly, but it takes everything out of me to do that sort of physical work-out, daily. It still hurts. I just want to curl up in bed and lick my wounds, you know?

I think that's enough for now, don't you?
I have a migraine coming on... haven't been sleeping well, partly because of this throat click thing- it is so annoying when I am trying to fall asleep. It feels quite unpleasant to swallow, and it is amplified in my head so that it is an actual noise to me.

Sometimes things are just so heavy.