Sunday, August 10, 2014

Choices

This blank screen has been staring at me all evening. Well, I have switched to other things, gotten some important things done in the meantime, but I keep coming back to this page. I need to write. I need it because the going got tough today. I want to write inspiring things, I want to feel optimistic, and give out good vibes through my writing. When I don't have that, when the optimism doesn't push it's way past sadness, that is when I often need to write. I want to push through the sadness, wring it out of my veins with writing. When I can't walk, and I feel unrelenting pain, this screen is always there, opening up to me. This screen can hold my words and deliver them.

From an outsider's point of view, it looked like I had a normal, nice Shabbat. We had a one of Shifra's friends at dinner with us on Friday night (and another guy who floats in sometimes on Friday nights, without warning), and 6 other guests at lunch. It's nice to host, I enjoy conversation.

I don't even feel I can write now what I want to write. These guests read my blogs. I don't want anyone to think that they are causing me any hardship. That's not the case; I need people in our lives. After all, people need human connections for their souls. God wants us all here to connect to each other, to touch each other. Life without Shabbat guests would be very isolating.

What I want to say is that except for the meals when I came alive and looked normal, I was in So. Much. Pain. today. I couldn't make it to shul (synagogue) even though there were many reasons I wanted to be there. Old friends in from out-of-town who I was hoping to see, and to be there to invite people who may not have had a meal plan with other people (our shul has a rotation for families to take in newcommers and others who don't have a meal set up for them, and this was our week). I knew, though, that if I walked to shul and back, I'd use up my allotment of steps I was given for that day. Some days I have a limited allotment of steps, and it's up to me to plan them out well.

The meals went well, we all enjoyed each other.
I really was hoping to go visit these out-of-town friends (and in-town friends also, who were all together today) this afternoon. Instead, I needed to rest in bed. Why in bed? Well, I need to be in a laying-down position for my hips to have real relief. Our couches aren't comfortable enough for me to rest in them. Anyway, when I am in pain, it is often accompanied by a desperate need for quiet, so the living room isn't usually the place for that.

Life is better with choices.
With pain, though, the choices get very narrow.
I didn't get to make the social call I was hoping to make this afternoon. That made me sad.

I know I've said this before, and it's no less true now... I still can't believe that this is *me*. That these changes have happened, and my choices have narrowed. That's really what it is. Sometimes people say to me that they'd love to have a day to rest, or that if I need to be in bed, than that is what my body is telling me, and to honor that. But what it is, and why these comments miss their mark, is because I don't have a choice. Pain takes away choice. These times I need to be in bed are sad and often isolating. Nobody feels good when they are in pain, or so inordinately exhausted that getting out of bed isn't an option. Is this really Sarah? Where's my vibrancy? I'm not a horn player any more, I'm not being a doula. Do I have a purpose in this world, other than to bring up my children (which I can do while working at a career, too)? Is getting through each day enough? What whirlwind took me away and deposited this one instead? Sometimes I have referred to myself here as "Sarah, prototype 2", meaning better, improved. Sometimes I don't believe that at all.

But, there are these times....

me & my little guy chillin'
Azriel couldn't resist taking pictures of me jumping!

This was a month ago... hard to resist the trampoline!

Boy, did I pay for it later, but it was fun.

Monday, August 4, 2014

About the war, lymph nodes, and God.

It was Azriel who made me realize that I am snapping at people these days.
There is an underlying tension in Israel now that is impossible to shake, and I guess I have been snapping a bit. Today we were baking a cake together, and when I needed him to move out of the place where I had to be to work the blender, he jumped down off his stool and ran upstairs crying. It took me a while to get out of him what happened, but eventually he told me... I didn't ask him to move sweetly or with patience. I apologized for that, then he told me that I have been "not smiley and nice" recently. Yeah, they really can pull at the heartstrings, can't they! He helped me realize that I am very tense about living in this war. There is so much tension- it's as thick as the conflict itself.

You know, the UN gave us this land in 1948. People seem to be forgetting that. We are seen as "occupiers". How did that happen? Why is the UN now letting part of the country be run by a terrorist organization with their charter which calls for death to all Jews? They agreed that we deserve a proper homeland. Why is the UN leaving us alone, to protect ourselves all on our own against this terrorist organization?  More than that, they are even pointing accusatory fingers at us, and supporting the terrorists! The UN is not comprised of who it used to be comprised of, that's one thing for sure.

I can't write more than that. Too hard, too close to my heart and spirit, too painful. "Where this is all going to end" is the scary, unspoken question on everyone's lips here.

So, I got down to Azriel's level and hugged him really strong. He was puzzled why the war is causing adults to be tense, after all, we aren't getting that many air-raid sirens... and today we haven't had any [yet]. Oh, to be a happy child.

On the physical front, I am having a big problem with lymphoedema (yes, it is spelled that way- it refers to swelling of the lymph nodes, and lack of ability for them to drain lymphatic fluid.)

Sine I had the cellulitis a month ago, the lymph nodes near the area of infection have not been able to drain the fluid. There aren't many lymph nodes in that area to begin with. The NF infection killed them all, and they needed to be surgically removed. That's why infection can settle there- there is no system to combat it. For a year after NF I went for lymphatic draining, and it got a lot better. Now it's back, and much worse this time. I have had two sessions of lymphatic draining (a sort of massage), and the therapist (not the same one I had before) says that the problem is in "S.O.S" proportions, that there is a serious threat to my lymph system. I may have to go back to wearing a pressure garment to reduce the edema, which was awful. Right now she wants to see me three times a week, in a clinic here in Be'er Sheva (thankfully). It takes a long time to get the fluids to drain, the whole system is stopped up. We have hour-long sessions, and it is not even enough time for her to open pathways for the lymphatic fluid to drain out of the lymphoedema area. This may sound complicated. In short, I have another difficult health problem stemming from NF, and the most recent bout with cellulitis, and I am more susceptible to infections because of it.

In a few days, I am scheduled to go for more allergy testing for the purpose of seeing which antibiotics I can take, but I am leaning toward not doing it. That, I believe, is what gave me the cellulitis a month ago. On the one hand it would be good to have more antibiotics on the "OK" list, but on the other hand, does it really matter that much? I mean, I have gotten sensitive to antibiotics after having taken them many times before. Who's to say that if I get tested again, and we put another antibiotic on the "good" list (or "definitely bad" list), that's not likely to change?

I have my plans for new York and Baltimore in September. I am *very* excited about it!
I have enough trust in God, and have been through enough to know that if, for some reason, this trip would be not good for me, He would put something in it's way. It's that way in my life- always crystal clear if Hashem doesn't want me to continue on a path I have chosen. Recently it was with the surgery I had planned, and then getting the cellulitis. Those events showed me that I am super-vulnerable to infections, and the surgery isn't happening because of that. He knows what we don't know. I'm not happy that I have to postpone fixing my right leg. But, I also don't know what the future holds in the way of challenges. I have been through enough to know how to take a loud, blunt hint. (Having a huge reaction to pre-op antibiotics a mere minute before anesthesia is what I call a loud, blunt hint. That, and everything that followed it.)

About traveling, I look at it this way: We all know this will be quite hard on me.
Harder, though, would be knowing that I decided not to do it, fearful that something may happen while I am there. I know that I have to make decisions that feel positive and moving toward growth. That is what life is about- always moving toward growth.
At the same time, as I said above, I know what it is like to get big, loud, blunt hints to not go through with a plan. I'll listen if it happens, just like I am listening and not rescheduling the right leg surgery.

Me and God have been through so much in my short life... we understand each other. We communicate. Any way I can, I embrace the life He gives me. We're good. B'ezrat Hashem (with the help of God).










Thursday, July 31, 2014

An impressive book introduction

Part of the book proposal I have been working on (sending it off tonight!!) involved doing a competitive analysis of other books in my genre. I spent a lot of time on the Amazon website, putting in many different kinds prompts into the search engine to find out what books are out there like mine. I didn't find one memoir that is structured like mine, or even has a before, during, and after illness chronicle. I spent many hours looking.

While searching, I came across many other interesting books. This one especially impressed me. It addresses in a very down-to-earth way the realities of day-to-day life with post-illness "fallout".

The book is called "The Cancer Survivor's companion", practical ways to cope with your feelings after cancer, by Dr. Frances Goodhart and Lucy Atkins. 

This analogy is in the beginning of the book.

(I easily substitute any traumatic illness episode for cancer, and it is nearly identical with many feelings I have experienced.) 


The storm of cancer
Before cancer, you’re sailing along in generally fair weather. You’re travelling in one direction. You have maps, navigation aids and provisions. You might even be part of a flotilla – you and some other boats, sailing in the same direction at the same speed. Life is fine, good even.
Then a massive storm hits – cancer.
Your boat is seriously damaged. Maybe parts of it are lost or broken. Your maps and provisions are swept overboard. In the eye of the storm, you lose all sense of direction. Your main terror is that the boat will sink.
Then your cancer care team appear. They are your lifeboat; your rescuers. They attach ropes, patch your boat up and keep it afloat; they come alongside you, and take control of the steering and direction. Slowly, they tow you back to port. Sometimes this journey towards the port is even stormier than the catastrophe itself. But you know you are not alone – you have the lifeboat staff, you make a good team.
As the lifeboat tows your boat back to port you see friends and family on the shore waving and cheering. They are so relieved to have you back.
But then your boat just stops.
You are not quite back in port. You can see the lights, and your happy loved ones. But you’re moored just outside the mouth of the harbour. Then your lifeboat, and its team, goes. They drop the ropes into the water and sail away.
You might think: I can get back to port on my own. You’ve been there before, after all. And you can see it, right there, quite close. But it all feels different now. Your boat is still damaged. You need time for repairs. You need to get a new map and provisions. And you keep looking at the sky – is the storm coming back? You listen constantly, obsessively, to the weather forecast – you hear reports of hurricanes. They may be far away, but you can’t stop yourself from feeling that they are coming for you.
This boat analogy may seem long-winded, but it accurately describes what surviving cancer can feel like – does feel like – for many people.

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

Good analogy. Actually much of this book is really good, and I do recommend it to cancer survivors, if you are interested.

I am extremely exhausted tonight, so I can't write more. I hope to have more energy to write tomorrow. I'll just throw in here one exciting thing-- I have reservations to go to the US in September! I will spend time with my parents and family in NY, and also attend the author's convention in Baltimore!! I am so excited!!

Monday, July 28, 2014

Lymph edema left-over.

After everything that has happened since the day the surgery was postponed (here is that post), I am indefinitely postponing the right hip surgery.

I have learned a lot about being aligned with my intuitive voice since NF.

Since the surgery was postponed because of my allergic reaction to antibiotics, then the follow-up allergy testing, then cellulitis (four days later), and a near-relapse last week after three days of vacation, I understand that my body is more susceptible to infection than other people's. I hadn't really realized this before. Maybe that sounds crazy to you, but I had my own belief that I was the statistical anomaly which drew the short straw, so to speak, and got NF. While that may be true, the damage that I was left with *does* increase my risk of infection.

At the moment I am suffering from lymph node overload. It's something that I dealt with the year following NF. It's called lymph edema- swelling in the area where the lymph nodes have been damaged by illness and/or surgeries. The damage happened with NF, and the whole year following NF I needed lymphatic massage, which was the only thing that relieved the discomfort. The lymphatic massage itself was actually quite pleasant, thankfully. The purpose is to "train" the lymph system to drain by way of the undamaged areas of the body through gently massaging fluid under the skin layer. After the year of this therapy, the lymph edema was pretty much under control. I would feel it occasionally, but not too bothersome.

Now, after this last bout of cellulitis, it is back. The lymph system near where the NF was is all swollen and painful. I have tried to do the lymphatic draining myself (as the therapist taught me years ago), but it's not helping. So, I will be starting a new course of lymph edema treatments.
Just what I need- once a week traveling to have this appointment- for who knows how long.

I was susceptible to the cellulitis because of the lymph damage. Infection settles there because there are no lymph node "soldiers" to combat it.

In short, I am not in any position to go through a surgery. My orthopedic surgeon told me a long time ago that he doesn't like the idea of operating on me because of the infection issues, but I always thought he was being overly cautious, that the chance of me coming down with an infection was just like anyone else's chance. Now I realize he was right to be cautious. Even with that, he was willing to operate on my right leg if I decided to. He wants me to be out of pain as much as I do. So, we decided to do it. The rest is history... only a month ago! Getting a serious infection in the interim has been a wake-up call for me. I am just going to have to deal with the pain from the hip. I don't know for how long. It is nice to think that the teeny tiny voice in the recesses of my mind telling me that maybe the broken labrum will heal itself in the time being is the voice of wisdom and truth. That remains to be seen. Since I am not going to go ahead with the surgery, we will have an opportunity to see if that will happen or not. :)

OK, even though I want to write more, I will end this here. I promise a post soon with pictures of vacation, and of my kids returning from camp (yesterday) all tan and magnificently happy!!

It's just that when I wait for a post to be finished, it winds up taking so long that more things happen, and there is too much to do. I am very busy with writing my book proposal for the contest, due Thursday!

Gotta go. On my way today to Jerusalem for an infusion of Torah with some classes I am going to attend. Bus in an hour. Bye!

(tomorrow is the ultrasound of the new right side pain... let's hope it's nothing.)

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.