Wednesday, July 23, 2014

Air raid sirens for rockets, infection sirens from my body..

I haven't written in so long mostly because of lack of internet. Which, taking into account that it was because we were on vacation, can be a good thing. I couldn't even upload pictures to facebook, though! Withdrawal!

On Thursday evening, we went up north, to make our way closer to the kid's sleep-away camp for visiting day on Friday. We stayed with a distant relative of Robert's. They were excited to talk genealogy the whole time. :)

Friday, visiting day was wonderful. The kids are wildly happy, thank Gd. They have gotten some air-raid sirens, even all the way up where they are (nowhere near Gaza, so I don't know where they came from... Hamas in Lebanon, perhaps?), but they are all fine. My kids took it upon themselves to calm others down while in the "safe room", because, being from Be'er Sheva, they are old hands at air raids and rockets and that sort of thing. Yah. But anyway, they are all healthy and happy, and were chattering a mile-a-minute about everything that has gone on in camp. It was a great day, and I am so glad I got to be there. If I had had the surgery, we weren't sure if I'd make it up there for it.

We stayed the rest of the time in a little log cabin in the woods. :) Just me, Robert, and Azriel. No sirens at all. Bliss. We had a lovely Shabbat around the settlement where the cabin is, and then on Sunday we toured all around the ancient city and artist's quarter of Tzfat. I hadn't been there since our honeymoon, so it was very special. It is a beautiful nook of Israel, and a very spiritual city. After touring around quite a bit, we headed back to our log cabin, but not before playing mini-golf along the way. A real hit with Azriel. I was exhausted, though.

What I didn't realize, or put together, was that I needed to take it easier than usual. I just can't behave like I used to before NF. I can't do waking up relatively early, being busy all day, doing many different strenuous activities, mini-golf when I am already beat, then out for dinner late.

Before I continue, I just want to say that I *liked* that. I haven't yet, after all these years, accepted that I just cannot do that stuff all at once. I love touring around. I don't *want* to be someone who has to "take it easy" when everyone else is enjoying themselves. I am a "do-er", not a "rester". Before I got NF, I practically never stopped. Seven years later, and I *still* find it hard to make myself stop, especially when it means making others not do what they want to do.

Actually, I did rest *a lot* on Shabbat. Almost all afternoon I rested. Sunday was the big day doing lots of stuff, but I felt OK. Until the evening. I should have called it quits, but I wanted Azriel and Robert to enjoy everything. I know you can understand that, right?

Monday we had to go back to Tzfat because we forgot something in an art/glass blowing studio we visited the day before. Before we left, we packed up our stuff in the log cabin and packed up the car. I lifted one suitcase from the bed to the floor, not even walking with it anywhere, and it didn't seem heavy. A half hour later, I was laying in the hammock while Robert was packing the car, and I felt a sharply painful area on the right side of my groin. It was very, very sore to the touch, but nothing could be seen from the skin. We thought, another hernia? Could that be it?

It was also Monday morning (after the Sunday touring and fun-stuff.... did I tell you that day started out with me jumping on a trampoline?) that I started feeling pain again in the place I had the cellulitis two weeks ago. So, left side hurt reminiscent of cellulitis, right side new pain, and I was not a happy camper.

A half hour later, we were in Tzfat, at the art studio, picking up what we forgot.
As soon as Robert parked the car, I threw up, violently. Something Was Wrong.
After that, I felt fevery, and desperately needed a bed. Immediately. I couldn't do anything else but lie down. The car was not an option. Turns out, once again with the hand of God helping out here, that the art studio has a few rooms they rent to tourists. One was empty, and they gave it to me to rest. Unbelievable sense of being taken care of here by the Big Guy, you know?

I rested there for almost three hours while Robert and Azriel went around town again, seeing other things. They had a great time. I was miserable, but at least not inflicting them with it. It was enough that Azriel had to witness my classy barfing episode, poor guy. Scared the bajeebers out of him.

I had a fever, and my different assorted parts were hurting. I did not want to go to the hospital inTzfat, and neither of us thought it was that sort of life or death emergency. I desperately wanted to go home. Whether or not I'd go to the hospital in Be'er Sheva when we returned, I wasn't sure.

It was about a three hour ride. I was nauseous and fevery the whole time. Nice, right? NOT!

Such an intense bummer after such a nice few days vacation. There were no external incoming missile sirens, but my body's siren was blaring.

When we finally rolled into Be'er Sheva (Robert's great long-distance-night driving, yet again!), we both decided that it'd be best for me to sleep in my own bed all night, and see what develops. My fever was low, and I didn't feel in imminent danger. I loathed the idea of going to the ER at night, with fluorescent lights overhead for hours, getting poked and prodded, and not getting any sleep.

So, I stayed at home. It was also an issue of who will be with Azriel if Robert and I went to the ER, but we could have solved that pretty easily. We'd have brought him to his friend's house.

At home: just falling asleep at 11PM- siren, get out of bed, go down four flights of stairs (in my house) to get to the safe room. Wait for booms. Coast clear, go back up all the stairs to go back to bed, after making sure Azriel is in bed again. Sleep. Until....
3 AM- siren. Same routine, down lots of stairs, booms, back upstairs. Try to fall asleep again with adrenaline coursing through my veins. Air-raid, remember? Finally fall asleep, oh, and no fever at all.

This morning I had a pre-scheduled appointment with my ID (infectious disease) doctor in Soroka. This was the appointment which I scheduled after my postponed surgery last month- I was told to do allergy testing, then go to an ID doc before rescheduling surgery.

This appointment, however, came at a very opportune time because of all this other stuff that has happened *since* the surgery was canceled. (CRAZY!). It was one of the reasons I didn't go to the hospital when we got back last night, knowing I'd have this consult today.

This ID doctor has known me and my case since the NF. She is also an English speaker- always a plus for me. I told her all the gory details since the Vancomycin reaction which postponed the surgery, the cellulitis hospitalization, and yesterday's bonus prize. Lots of talk about antibiotics.

She did a physical exam, checking out my new right side pain. She said, to her, she couldn't feel a hernia (I coughed while she pushed- OW!). She suggested it could be a lymph node problem, and also said I need an ultrasound for it. The left side (from the cellulitis of two weeks ago) was a little red and inflamed, but less than it was last night when we came home from vacation. No fever.

For now, I have a prescription for more antibiotic (the same one I was on until last week) if my fever should go up again, or the cellulitis is back. Tomorrow I will see my GP. She will help me decide what to do. I'm sure she'll give me an ultrasound referral for the new right side pain.

Since the cellulitis from two weeks ago was "over", I never really felt it out of my system. I kept feeling pain there occasionally, and I thought I was getting new nerve pain areas. I have gotten nerve pain areas from cellulitis before. But I kept feeling just kinda under the weather, and my lymph nodes, especially in the left groin, were very painful.

Speaking of which, I got the results of the MRI.
GOOD NEWS: No PVNS! Baruch Hashem. That was great to see. Basically it said that my left thigh joint is about the same as it was from the last MRI a year ago. Stable in it's kinda messy way. It did say, though, that there is an especially large lymph node. My doctor said not to worry about that, it's normal to have that after just having been through cellulitis.

So, that's the story, in all it's glory. Tomorrow I see my GP and try to decide what to do about this episode that seems like a relapse of the cellulitis, but not 100%. Just bad enough to make me feel pretty crappy, and not bad enough to take immediate action. A very hard place to be.

I will give some pics with the next post, I hope. I gotta get internet back on my phone so I can transmit the pictures. (It's a long story why I don't have internet. It'll get aquared away soon).

I am going to bed now, quite sore where the new pain is on the right side groin. Tomorrow morning to the GP and we'll make a plan.

I decided to sleep in the safe room tonight. I sooooo don't want to for many reasons: 1) it is not a very comfortable bed, and my own bed is *awesome*, 2) there is no air conditioning and we live in the desert (but the ceiling fan is decent one), 3) all my stuff is near my bed up here. But, climbing up and down 4 flights multiple times a day while fighting an infection is just not good. I am not getting enough sleep. We have so many sirens every day, and boom boom boom boom boom boom all the time, with the sirens, *and* without. Booms of explosions literally all day. We are lucky to have a safe room. It is made of steel with reinforced concrete. It even has a window, but these days it is always shut with an iron closure covering it). I slept there during the last war as well.

I get so much adrenaline when the siren goes off and I hike up and down stairs, it is so hard to get back to sleep. Also Azriel is begging to sleep there with me. He wants to feel more secure. So, yah, Robert is setting it up now, and I'm moving in. I'm also trying to fight an infection here. I need rest and sleep.

I have many political things to say about this all (and anyone who reads my Facebook writings knows that), but not here. I chose, and still choose every day to live in Israel. This is my home in every way, shape and form. I would move my bed (and those of my children) to another one in Israel to be safer, but I would not leave Israel. I just hope this is over efficiently, fast, and that we don't keep losing precious young lives in battle. My heart breaks for them, and their families. As a mother, I fear these mother's grief. My boys are still too young to serve (at age 18 they get drafted), but I feel, in my veins, each and every loss, and case of PTSD that happens with these wars. When I was in the psych hospital after I had NF, being treated for my acute PTSD, I was only one of three civilians there- many were released soldiers battling with PTSD.

OK, I am now settled in the room which Azriel named, three wars ago, the "boom boom room". If we have another siren tonight, he will join me here. I'm fairly certain we will.

I pray we wont. 
Ever. 
Again.

This video is beautiful. click here: Make love, not war.

Sunday, July 13, 2014

An insider's view on being attacket by Rockets from Gaza... and a medical update

Life goes in so many tangents these days. I don't even know what to write about.

I'll say a little about what it's like living in this situation again where Gaza is firing rockets directed at us. We have air-raid sirens 5, 6 times a day, including one usually in the middle of the night. It's a bit nuts. We've lived through this many times before, though- it is *almost* normal, but isn't that crazy to say? It seems that Gaza attacks us with rockets that actually reach Be'er Sheva like once every year and a half or so. You should know that while there aren't always rockets to Be'er Sheva, there are almost always a steady stream to the smaller towns closer to Gaza, on the outskirts of my city. They constantly live with air-raids. We have states of emergency, as I said, it seems, every year and a half or so. There is so much I can say about it, but I am tired. I can say that day camp for Azriel has just been indefinitely canceled. All day camps in Be'er Sheva were canceled last week, but since Azriel's camp is just outside of Be'er Sheva, they didn't cancel right away, but, the call came tonight that it is canceled. There were already a few times that the mini-van that takes the kids to and from the camp was caught in the road when a rocket attack happened. With no safe room to go to, the kids went to the side of the road, crouched down, far from cars, with their hands covering their heads until the "booms" happened, and the coast was clear. That is scary. Azriel was scared for a while after that, but tonight, when we were having an air raid, we were in our safe room (in the house) and he said "hey, I'm not shaking now. I'm not scared anymore". He's been sleeping in our bed since the three older kids went off to sleep-away camp. He is scared to sleep on the other level of the house where the kids rooms are, and he's the only kid home. It's cozy.

(The other three kids are having an *awesome* time in camp, and are very safe, nestled in a northern enclave near a beautiful part of the coast. *BUT*, tonight we did get word that the camp got an air raid and a boom nearby. I can't believe it. They are very far from Gaza, but this one probably came from the Hezbollah in the north. Well, let's hope it is a fluke and the kids will carry on having a great summer....)

I wrote a letter to my parents tonight expressing some thoughts about the war here, and I am going to just paste some of that onto here. Hope you don't mind, Dad & Mom!

If tonight is again interrupted by sirens (last night we had one at 4am, each night around 1 or 2 am also), I am going to start sleeping in the safe room. It is hard to do all the stairs all the time for me. [we have a house where the parent's bedroom is the attic level, and the safe room is four flights down in the basement]. The bed in there isn't as comfy as mine, and there is no air conditioning in there, just a ceiling fan, so that is why I haven't done it yet. It is just a balance of what you are willing to cope with, you know?
Anyway, after I've said this all, I want to say, Dad, that *I am not scared*. At all. We can cope with whatever comes our way, and I am not scared.
So yeah, we keep going on with our lives.
I am recovering slower than I was hoping for after the cellulitis hospitalization. I have been feeling weak and not able to do much. It really threw my body for a loop, I guess. I'm still taking antibiotics, and haven't had a fever since I got home from the hospital, which is good. We did go to friend's today for Shabbat, and that was just so awesome, to be with so many people I love so much! We had two air-raid sirens during the Shabbat meal. During one of them, we were in their safe-room all together, and I decided to sing a Shabbat song. Everyone joined me, and we drowned out the booms which came after the siren. I was really emotional about that, I was actually crying from the beauty of singing a Shabbat song while sheltering from rockets being showered upon us by our.... enemies?.... cousins? I can't figure out what we are to each other. We are their enemies, but are they ours?

By the grace of God, and the ingenuity of the Israel Defense Forces, there have been very minimal damage to property or person during all these rockets. Many of them get destroyed mid-air with our anti-missile launch system ("Iron dome"). There have been injuries to two or three people, but compared to what could be happening every day, it is only a miracle.

Since I am so tired, I just want to skip to my next subject here... I could write so much more on my feelings about living in Israel during times like these, and bringing up kids talking about kidnappings and murders, bombs and Gaza. Here, we live in an alternate universe than America. It's not scary, but it's not OK, either. We live, and we sing, and our kids laugh and play the same games your kids play. It's just... an alternate universe. If you want to come here and see what I mean, my house is your house. :)


Going on....

I have the MRI tomorrow for my left leg. It is kind of a story how it came about. I'll abbreviate it. If I waited for the MRI to be convenient in Soroka, I'd have waited another two months. Since I want to be able to make a decision about surgery, I need the MRI ASAP. So, I called the "mobile MRI". It is just that- a mobile home with an MRI in it. They move around and park in different hospital lots. They go to the hospitals which don't have MRI's in them. I wanted to know when they will be in hospitals within an hour drive for me. There are two hospitals. Turns out that they were going to be in Rechovot, an hour away, this Sunday (tomorrow- today if you are in this hemisphere with me). So, great, I took an appointment. Robert would drive me, since I have had to completely give up distance driving because of the meds I take. (It is another huge loss of freedom stemming from the NF 7 years ago.)

I got a call on Thursday from them telling me that because of the situation that missiles are able to reach the mobile MRI unit, they are moving the unit to a hospital further away, in Holon, near Tel Aviv. Rockets have reached Tel Aviv this week, so I'm not sure why that is better, but that is what they decided to do. OK, so I'll go to Holon, an hour and a half away this time. They made my appointment earlier, also. Annoying, but OK, we can deal.

Tonight, just as Shabbat ended, the phone rang. It was the mobile MRI staff telling me that when they moved the machine across town, some piece got damaged in the machine. I can still have the MRI tomorrow, in Holon, but I have to come much earlier, so that the repairman can come fix the part, by noon. So crazy, right? So, instead of having a leisurely 4pm appointment an hour away, now I have an 11:30am appointment an hour and a half away. Because of the war. "and the rockets red blare, the bombs bursting in air... " It's not only for the fourth of July anymore! We live that, here, on the other side of the planet. Alternate universe.

We are so small, they are so big. We are strong, they are.... getting stronger each time we agree to a cease-fire and give them more time to gather more ammunition and design better launching systems. OK, I gotta stop. I don't like spurting political stuff on my blog. It's just that sometimes life here in Israel is *inseparable* from politics, or religion. It is the most intriguing place on the earth. It's not only civil, not only military (but soldiers and machine guns are on every street and bus stop), not only secular, and not only religious. Go figure.

I'm not scared.
Just tired.
Gonna cuddle with little Wazi next to me here and go to sleep.

I'll update tomorrow about how the MRI went (if that isn't going to be canceled, too!). Also I want to continue with chronicling what happened the next day of the hospitalization last week. Never a dull moment.

I pray for a quiet night. We all need it desperately.

Just one more snapshot I just remembered that I want to share with you:

Azriel and I were out picking up an order of sifted flour I get from "the flour lady"... it's a long story, not relevant here....

We were on our way to a friend's apartment to pick up the order, and there was an air-raid siren. It was Friday afternoon, about three hours before Shabbat. It was the first time all week I went out at all- I was in pajamas all week since I came home from hospital. Each time I tried to make it past showering to go out, I got terrible weakness and got into pj's instead of dressing to go out.

I digress....

So, I was on the cell phone with the lady with the flour, getting directions to her apartment. While we were talking, the siren went off. I asked her where to go to take cover, she directed me to a stairwell in the building next to hers. Not a safe room, but the stairwells are considered safe.

So, we went into the building, and everyone directed us up to the second floor, where it was considered safest. Families were filtering out of their apartments in various degrees of Shabbat preparations. It was pure *beauty*. Children coming out, wrapped in towels from their baths, dripping on the stairs, mothers with aprons, father's holding babies wearing only diapers, teens with no shoes on and their hair tousled. The pervasive smell of chicken soup and challah baking. That magic smell. I know this doesn't sound like a beautiful picture, but to me, it was a snapshot of Am Yisrael on a Friday afternoon. Cooking, bathing, taking care of the babies, teens getting rest for the first time all week. Religious or secular, this is Friday afternoon here. With and without being bombed.

Since we are usually only in our own safe room in our house, I haven't been caught outside much with the air-raids. It happened one other time a year ago when I was walking Emma at the park, but we went to a wall and crouched down there. Anyway, OK. I know I could go on. I gotta get my fingers- and my brain- to stop.

Leaving early for the MRI tomorrow, and who knows if tonight will be quiet or not.

Good night from... a kinda war zone, but kinda just home. :)

Wednesday, July 9, 2014

Another infection, hospitalization.

Would you believe that for the week or so that I haven't been updating my blog, nothing out of the ordinary happened?

I wouldn't either.

I wanted to write a post the evening after I did the allergy testing for the antibiotics. I was so tired, though. The few days after that were also very hectic. All the kids were home every day, and it makes for some really non-stop days. Three of my kids went off to sleep-away camp this morning, and there was a lot to do to get ready for that.

So the results of the allergy testing gave us one antibiotic that we can safely say can be used if I needed it. Well, two- in the same family of antibiotics, but slightly different. The doctor set up another time for me to return to test some others. I left there thinking "OK, I got this now. Should I just reschedule the right hip surgery? Or wait until the MRI for the left hip and see which is a priority? So, I put those thoughts in a holding pattern. Made a mental note to call and get an MRI date ASAP.

Going off on a little tangent here- you'll see where I'm going with this soon....

When I got NF, we, of course, learned whatever there was to be learned about the disease. One of the interesting things we learned, which fit into the puzzle of when I got it, was that from the time a bacteria gets into your system to the time it morphs into NF is 4-5 days. I had the surgery on a Wednesday, and by Sunday night we knew that something was wrong. I think the horrific ambulance ride to the hospital was that Sunday night. It took another three days before I'd get antibiotics, though. By that time, the strep bacteria had settled in for the long run. By that Friday I was on life support.

OK, fast-forward the picture to last week.
Allergy testing on Wednesday. That entailed shooting a small, diluted form of the antibiotic into the upper layer of my skin on the underside of my wrist. They use a syringe, and put the fluid like a bubble under the superficial layers of skin. Then you wait 15 mins or so, and if the patch of skin with the bubble of liquid under it didn't turn red, they give you a more concentrated form of the medicine, also injecting it superficially under the skin.

As the needles were going in under the skin, I, of course, had a few thoughts that it could be bringing in other bacteria with it, as well. They dab the skin area with alcohol pads before sticking in the needle, but alcohol is useless with strep and staph. It doesn't kill it. Not on surfaces, not on skin. So here I was looking at these needles being stuck into me (deeper than an acupuncture needle, and at a deeper angle, if you want a reference), thinking "hmmmm.... let's pray there is no strep or staph hanging around on my skin from being in the hospital for a hour beforehand waiting for my appointment... or on the needle...."

I often have these thoughts. I am an NF survivor. Every single time I get a cut of any sort, I wonder if it will turn into a bad infection. *Every time*. It haunts me. If the cut gets red over the next days after it happens, my mind can really have a circus about getting NF again. It is an internal circus, I don't even talk about it anymore. But it happens each and every time I get cut, or scraped, or have a shot.

Well, up above when I explained about the 4-5 day incubation period for NF to take hold?
It could explain why I came down with a nasty form of cellulitis on Sunday, four days after the allergy testing. Yup.

I just spent three days being very sick, two and a half of them in the hospital. Came home today. 

I had a fever that made me feel like I was going to pass out at any moment, and pain near the Gapey site. Why not on my arm, where the needles were poked in? Well, my theory is that my lymph nodes can fight bacteria well, until bacteria finds it's way to my Gapey area. Not much to be said for lymph nodes around there. They all got removed with the NF. My lymphatic system in the left groin and thigh is shot, basically. Each time I've gotten cellulitis, it's been there. Often without seeing a definite point of entry. I really think that bacteria get in however they do (in this case, likely from the allergy testing injections), and settle in the groin/thigh area because there is no defence system there to fight it.

Sunday I had a horrible feeling fever (and was camp shopping with the kids- they still needed stuff, and I pushed myself to do it. Robert was at work, and it needed to get done.) I didn't listen to my body and just rest. I *knew* something was up when there was one specific area bothering me, hurting me more and more throughout the day. Fever climbed, and I called Robert. He convinced me to look at the area (hard to see) with a mirror, and call him back. I did, and was literally shocked by what I saw. Purple, red, swollen, spreading red down my thigh. Red flag for cellulitis. I've had it enough times before to know exactly what I was looking at.

It was four days after the allergy testing.

Well, Robert again convinced me to go to the ER, even though he wouldn't be home for over an hour later. I didn't want to/couldn't go alone. Robert called my dear close friend Miriam, who came swooping in a few minutes later, helped me get some stuff together, and took me in. The kids were shocked that one minute I tell them I am really not feeling well (I prepared a cooked dinner, anyway! With a 102 fever!), the next I am going to the ER. It is a scene they have seen before, quite a few times, unfortunately. It's sad. Dov put his arm around my shoulder, Shifra held my hand while we walked out to Miriam's car to go to the hospital.

Upon reaching triage, I told the nurse a very condensed version of my story, and alarmed them enough to get me a bed and a doctor pretty quickly in the ER. Within 2 hours, I got antibiotics-- the one I knew was on the "OK" list from the testing beforehand. Ironic, right? Let that sink in...... (if there was no testing, I may not have gotten the cellulitis, but since there was testing, and I got sick, we now had an antibiotic to give a maiden voyage...)

After way too many hours in the ER, knowing I was getting hospitalized, Robert got fed up waiting for an orderly to take me up to the ward, so he rolled my bed and took me there himself. My hero.

Finally bundled into a bed, fevery and in pain, but at least all the fluorescent lights were blessedly off. The ER is awful for anyone suffering and needing to rest. Those fluorescent lights are like interrogation lights shown directly into the eyes and face. I learned to pull my hat over my eyes. It helps. I cant turn myself onto either side usually, especially in uncomfortable beds, because of my hip pain. Being on my back, with a raging fever, those lights overhead, makes me very irritable and desperate for darkness. When I finally got into a regular bed in the surgical ward, I was out... like a light.

To be continued. I have to sleep now. I'll just leave the next installation starting with what happened in the morning. I was told I will not stay in the bed I have been comfortable in- both emotionally and physically. Why? What's this about being emotionally comfortable in a hospital bed? That's for next time. 

I have a lot of writing to do these next few weeks... a lot. Book stuff, and another time-related project, not book related, but the deadline is drawing close and because I got sick I haven't done it at all.

Having said that, I will try my best to keep up with the blog and chronicle this most recent infection, stemming from having had NF.

May we all have a quiet night... it's not been so quiet here, as you may have been reading or seeing in the news. We have rockets red blare (Arab-style), the bombs bursting in air (Israeli-style) on a too-regular basis these days. It's happening again. Be'er Sheva and all the outskirts is being bombed by our cousins over there in Gaza. I had two air-raid sirens while in hospital, and one long one just about an hour before I started to write this. I'm not scared. I've been through worse. My faith keeps me completely not scared. I just want it to stop.

Just like WW1 was started by the killing of Archduke Ferdinand and his wife, a hundred years ago, here the situation is different but similar. Three Jewish boys were kidnapped and murdered by Arab terrorists. Then one Arab boy was mercilessly murdered by Jews. I am not getting political about "us" and "them". I am merely saying that these atrocious deeds have started off this "escalation of hostilities" (I do not like that term), and how far it will escalate and where it will end is one big question mark.

Let's pray for quiet in Israel, for the children who *are* scared, even when their parents are not. 
This parent, however, is weary from the cellulitis infection and hospitalization, and glad to be home. Let's also pray that switching my antibiotic from IV to oral upon hospital release is enough coverage to keep the infection going away. That, actually, does scare me more than getting rockets and air raids. Infections. That is what scares me. Please, antibiotics, keep with the program. Keep up a good, strong, protective transition from going directly into my blood stream with the IV to going through the digestive system, with pills now. C'mon body. We got this.

Friday, June 27, 2014

My story, 250 words or less

I am entering a writing contest (actually two different writing contests, but this one first). The winner gets their story as a chapter in an anthology of inspirational non-fiction stories. The anthology is called "Pebbles in the Pond", and it is under the auspices of my mentor, Christine Kloser. The 3rd edition just came out a few days ago, and I have already read most of it. I am so inspired by it, I want to give my story and my inspiration to others. (BTW, it is .99 cents now on Amazon for Kindle. Snag it! It will only be that price until tomorrow, I think).

Christine runs an eight month course which she calls her MasterHeart coaching program. It is very intensive one-on-one (Internet) mentoring and coaching. The people who do that course automatically have their story published in the "Pebbles" anthology. That course costs $10,000. Yup. So, this contest will give someone the MasterHeart program for free, and have their story published in the anthology, due to come out in one year from now, next June.

Since the "Pebbles in the Pond" came out a few days ago, it has soared sky-high on Amazon, and yesterday reached the marker of 180th in *all Amazon books*. That would be millions of books- every book on Amazon. The book is that close to the top. It's said that a great Amazon standing is if you are in the first 50,000. That is just in the first two days. It is an international best-seller, hence the authors of the chapters are international best-selling authors.

I want in.
I am filling out the very challenging contest entry form these days. It has taken me hours so far, and I still have a few more very challenging questions to answer. Each answer has a word count to stick to, and if you write above the word count, you are automatically disqualified. They check he word count before they read the responses themselves.

I want to reprint here for you my answer to the question:

"Please share a brief summary of the Transformational Story you want to share in 
"Pebbles in the Pond -Wave Four"

So, this is my story, in 248 words. Because of the word count limit, it took me 3 hours, at one sitting, in the hotel lounge of the Leonardo Hotel here in Be'er Sheva.

lounge, coffee, computer. Bliss.
~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

My story is about how my scarred and broken body gave spiritual essence to the soul it houses.

I made a seamless, yet presumptuous plan to bring another soul into our family.
My strategy was elaborate and sound.
I resigned my position as an orchestra musician, then had surgery to fix a hernia before the pregnancy.

Five days after the surgery, a deadly infection took hold. The flesh-eating bacteria, Necrotizing Fasciitis (NF).

Organ failure. Coma. On the precipice of life and death. Multiple surgeries. Hundreds of friends and family praying. Four young children at home.

With my husband, praying, swaying, eyes shut, by my side, I woke up.

My road is like one of those rickety rope bridges dangling over alligator infested waters. Painstakingly balancing my footing on that bridge isn't what I'd call the road to recovery, rather, steps toward transformation. The rare diseases and surgeries I have endured since NF broke not only my body, but also my soul and spirit. Hospitalizations have been in surgical wards, oncology wards, and psychiatric hospitals. They continue even today.

My body and soul have been through drastic transformations. The illnesses took away my ability to have more children. My skin grafts and scars, deformities beneath my clothes. Birth comes in many forms, however. I did birth a new soul, like I had planned, but it was... mine.


My new soul is built to accommodate God, faith, and loving. That is what my story is about. Turning death into life.

Monday, June 23, 2014

Introducing another medical wild card into the picture

I have two different doctors for my two hips.

Left hip is the one that has the scarring from NF, and from the PVNS disease. PVNS is a disease that has a 50/50% chance of returning after the tumors have been removed. My surgery to remove the tumor was in 2009, and I summed up the entire story of finally getting the diagnosis of PVNS here. The latter one brought back many memories of the year it took me to convince any doctor that something really is wrong in my hip. Nobody believed me. PVNS is a very rare disease, nobody knew what they were looking at with my MRI.

So, my point in mentioning this all is that recently, like starting about a week before my scheduled right hip surgery (not-PVNS), the left hip started acting up. There were a few days that it hurt more than the right one.

The left hip needs an orthopedic oncologist for that disease, and my doctor for the right hip is a highly specialized hip/shoulder sports orthopedist. I know, it's crazy to have a different doctor for each hip, but here it is.

I haven't had an MRI for the left hip, to check if the PVNS is returning, in a long time. I have to try to check when, but it's been about a year. I am supposed to have one every 6 months, but it seems we dropped the ball on that one since the right hip got bad.

So, this led me to wonder if I should get an MRI on the left hip before I go ahead with the right hip surgery? It is mind-boggling. Completely. PVNS is more dangerous than the hip impingement/labrum tear I have in the right hip.

I am just *sooooo* confused. After the right hip surgery last week went down the way it did, in the back of my head I wondered if I would ever actually have a chance to get my right hip fixed. I felt like it will never happen. I need to see an allergist (just got the referral for that today, I need to make an appointment), then an infectious disease doctor. I'd need that with any surgery I have to do. There is no real reason why it will never happen, but my head jumped to the illogical conclusion that the surgery will not ever happen. Something in me felt like it *knew* that to be a fact.

As far as timing, yes, it could still be done this summer. But, I am fully planning on going to America in the beginning of September to go to a writer's conference headed by my mentor for my book writing. At the same time, of course, taking the opportunity to see my parents. I can't make that trip on crutches. I mean I could, but I don't plan on it. Way too hard. If the surgery is postponed for more than the middle of July, I have to wait until I return from that trip. Then of course, I get into the territory of Shifra's BatMitzvah, in November 2014.

What if the PVNS is returning, though (God forbid)? If I go through right hip surgery, then need left hip to deal with PVNS, that is a bad scenario. Maybe that is why my surgeon (the one who aborted last week's surgery because of the antibiotic reaction), at first, told me he does not want to go into either hip, unless it is PVNS. He does not want to operate on me because of my whole background. He tried to talk me out of getting my right hip fixed, but told me he would do it if I chose to. I have so much pain from it, that I made that choice to fix it, and he supports my choice.

Now, should I follow my tiny but nagging voice that tells me to get an MRI for my left leg before I reschedule for the right? That could hold things up for quite some time. It can take months to get an MRI date. On the other hand, I could possibly schedule the right hip impingement surgery for sooner if I weren't waiting for an MRI. Or, maybe I could call every hospital in Israel that has an MRI machine and try to get a close appointment. But first I have to get in touch with orthopedic oncology to see if I can get a referral for an MRI without coming in for a check-up, or if I'd need an appointment there first (another thing that could take months).

You see where I am going with this?
It is so murky... I am so confused.
Was the surgery cancelled so I could get some perspective here regarding the importance of keeping tabs on the PVNS disease? Obviously it was canceled for the plain reason that I need allergy testing for antibiotics. I need that no matter what, and, frankly, I am relieved that we will finally know what I am and am not allergic to. Every time I need an antibiotic it seems like a shot-in-the-dark.
But the fact that pain has gotten more intense in the left leg makes me sort of raise an eyebrow (I could never do that with just one eyebrow. My daughter Shifra can, though! It's hysterical).

Basically I feel so lost about how to go about improving my pain. That's *all* I want. To get relief from pain. The underlying force to my every waking daytime hour revolves around pain.

Since the day of the first surgery which led to the NF, I have not had more than two or three days in a row with no pain. Narcotic pain medicine has been my constant companion for 6 years. It started around the time after I had the PVNS surgery, followed shortly thereafter by the appendicitis. Here is that post.

OK, I got it all out. It is jumbled and confused, but I spit it out onto paper.

Man, on top of all this, I have a list a mile long of very important things to take care of for the kids, and for my book! Building a website, getting ready to reveal the name of the book and move the blog over to the book website. Investigating schools for my son who is going to move to a new high school next year. Signing up for camps, paying for camps. It is very stressful this summer regarding money with three in sleep-away camp. It gets to about 9 months of mortgage payments! And I don't work. It is so important for us to give the kids these experiences for the summers, and this camp is awesome. It is part of our value system. Having them stay around the house without a particular daily goal is a terrible way for a kid to spend the summer in a city.
Shifra needs braces, and that is another big chunk-o-change. So many things on my shoulders... lists getting longer by the day.

I will go on, one day at a time, and Robert will, also, fighting his own exhaustion constantly.
I need to go to sleep.
Please forgive me for a confusing, complicated post. I just had to get it out there, to work out my own thoughts and worries.

Will I ever be out of pain?
Is that a goal Hashem wants me to build upon?
Will I ever be out of pain? Ever get off the narcotics?

One Day At A Time. I pray the answers will come to me clearly.
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And while we are talking about praying, please pray, with all your soul and being, for the safe return of the three Israeli boys who were kidnapped over a week ago. Their names are:


Yaakov Naftali ben Rachel Devorah

Gilad Michael ben Bat Galim
Eyal ben Iris Teshura