More Questions

Posted on November 16, 2011 by administrator

Did you ever wonder if, when there was no electricity, no no cars, no machines, only candles, fires, heavy natural fiber clothes, if there really was some kind of “magic” to it all? I don’t mean the Harry Potter kind, I mean an ability within each person to connect to the deeper meaning of life, the ability to connect with the idea of a King, to connect with HaKadosh Barachu (the Holy One) Himself?

How did people gain the strength to go beyond there peasant lives and fight against the oppressors for Jewish values, or fight for the Holy Church, or fight for the right to interact with the Holy One without intercession of a priest, or later, to fight in the name of their prophet Mohammed?How did we stand up to Majesty when all we knew was dirt and animals and ale?

And why is it that we all say, “G-d is on Our side?” Where did we get that?

And another question – why is it that the more we moved away from the idea and presence of King, ever towards democracy, that we also move away from our belief in G-d’s existence, of G-d’s presence in our lives on a daily basis?

And maybe my last question – why does it take extreme sickness, near death experience, to awaken us to G-d and His Mercy?

All I know is that I don’t want to die. I believe, and have always believed since I had conscious memory (three years old), that I would be alive to see the coming of the Moshiach (the Messiah), not the Christian Second Coming, but the Jewish Moshiach. I want to live to see that fulfilled. I want to live because I have too many things undone, too many hugs and kisses to give my family and friends, too many things for which I need to do techuvah (repentance, correction) before I die.

I don’t feel well, quite nauseous, blowing hot and cold. I’m still suffering from the pain in my chest and shoulder. At times I am quite scared, no matter how much I try to live with the knowledge that every thing come from G-d, and therefore everything is good.

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Work Has Begun

Posted on November 6, 2011 by administrator

Yes I know I haven’t written anything since July. I don’t even want to write now – it’s just that I’m compelled to say something, anything. In that I might find menucha (hard to translate – like peace).

Some statistics for those of you keeping tabs:

  • To date I’ve lost 25 kilo. That’s 25*2.2=55 pounds. I still have another 10 kilo to take off to clear my poor body of the prednisone hit.
  • I no longer take any steroid or blood pressure medicine. That leaves me with the daily chemo, simvacore (cholesterol due to medicine), mega doses of Vit D, pain meds for joints (muscular-skeletal keywords), two anti-nausea meds, blood hormone, and bone (actonel) stuff.
  • I can walk and walk. I can even climb a flight or two of stairs. Given a lot of time I can climb as many flights as needed.
  • My blood pressure is low, 90/60 on a good day. Doc wants me to force it up so the kidneys get blood.
  • I’ll be on daily chemo for at least another two – two and a half years.
  • I’m dreadfully emotional right now, probably due to lack of blood. Hope this is corrected in the up coming week.
  • I’m working part time and enjoying it. My clearance came through so I’m eligible to work for my main client – many up and coming kids young adults that are great to work with.

I labeled this post “The Work Has Begun” because whenever I start something there is a certain amount of enthusiasm and drive that keeps me going and doing. At some point that energy stops. That’s when I really have to work to keep going in the right direction. In the beginning I wasn’t tempted by foods that I couldn’t eat. Now I find myself with protein cravings that drive me to inhale whatever chicken happens to be cooked. Fortunately that doesn’t happen often – but when it does I get serious pain in the gut.

My determination is shaky. I get down much more often than I did. I can’t see that light at the end of the tunnel anymore. I only see an endless, dreary, dark path in front of me. These are the times I wish I had millions of dollars so I could travel to see family. Death seems so much closer, and I’m afraid I’m not going to spend time with anyone (excluding my absolutely fantastic husband and prince charming son). I catch myself beating me with a huge club whenever I think of my daughters going through their stuff without their mother.

This is why I haven’t written. I don’t have a positive spin. In fact, my spinning seems to have come to a hard and fast halt. And so has this post.

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My Latest Fascination

Posted on July 26, 2011 by administrator

This is what I do with my time when I’m trying to escape my body. Fortunately I have been feeling rather good since last week. I keep asking myself “Is this for real? Will this last?” I don’t know, but I’m enjoying feeling better.

I’m curious. How many of you out there use coupons when you go to the grocery store (raise your hand)? How many of you have heard of extreme couponing (raise your hand)? I’m fascinated by the whole process. See, we don’t have coupons. I can’t buy the weekly big paper (that comes out on Thursday) for coupons. I can buy the paper, there’s just no coupons. So I subscribed to about four blogs that specialize in coupons, deals, and freebies. Every day or so I spend a few minutes pretending I was going to use coupons. I work through the lists looking for something, anything that I might buy, were I to live in the US and shop in regular stores. I don’t often find anything that I would use. It’s funny that way. We pretty much make everything, or do without. Even the coupons for cleaning supplies, paper goods, and stuff like that, I’m not sure I would buy in a regular store. That’s what Dollar stores are for. But I’m still fascinated.

The second object of my attention is the bento box. Are you caught up in that craze? The bento box, it’s origins in Japan, is a great way to eat a meal away from home and still be a mentch. The food is all decoration, really cutsie stuff, and you eat it. There are molds for shaping boiled eggs into animal heads, tiny cookie cutters of all different shapes, small refillable soy sauce plastic containers (and a special funnel to refill the container after it comes back home). The paraphernalia surrounding bentos is joy by itself, let alone the creativity it spurs to put a bento box meal together. I keep wanting to buy the box and a bunch of stuff to create beautiful food, but I don’t go out to eat. I work at home and eat at home. So there is absolutely no reason to get it. Which makes it all the more “forbidden fruit” kind of a thing.

Here are a few more pictures of bento boxes. They are very creative.

 

 

 

And there are boxes for adults.

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Hey You…

Posted on July 24, 2011 by administrator

do you remember picking blueberries under the pine forests? I never knew blueberries could taste so good. And do you remember finding wild strawberries? I had only tasted them once before when my father took me on a walk along the unused railroad tracks. I tasted the green apples by myself. I remember reading about green apples and stomach aches, so I figured they must taste good if someone will eat them knowing they’ll get sick. I didn’t like them. Even though they were sour, and I really adored eating lemons, green apples were sour in a hurtful way.

I keep seeing recipes with raspberries, blueberries, gooseberries, strawberries, lots of berries – and I can’t get them, not fresh at any rate. And yes, California is beautiful (a whole different story).

It’s really summer. It’s really hot. I really don’t want to do anything for a while. I’m homesick for the shore, the sea smell, the gritty sand. I have a desire to walk the boardwalk and peek into the shops. Mind you, I never laid out in the sun. Not my thing. On my walk I’d find kosher hotdogs with mustard and sauerkraut, maybe some pickle relish. And I’d find kosher hamburgers with mustard, lettuce, and onion – hot off the grill. And I’d have a large 7up with lots of crushed ice; eating the ice is half the fun.

And in my daydream I won’t go home and throw-up. I won’t get sunburned. Once I washed the sand away I’ll be ready for dinner, chicken and corn on the cob grilled outside, while the breeze fanned over me.

I’m having a little difficulty embracing my limitations. I’ll go and get some ice, drink more water, and dream.

 

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Well it’s Summertime and the Weather is Fine…

Posted on July 18, 2011 by administrator

…you can jump right out and even touch the sky…, or go swimming, or read a good book, or learn to make jam, or learn to freeze corn.

I went to a high school that had a reading list I had to complete between June and September. I don’t know what excuse I used to read when I was in Junior High or even grade school. I do remember being thrown out of the house to do something other than read, but I can’t remember much other than going to a friend’s house to watch her play with her Barbie dolls. And except when the fair came to our little village and setup on the fairgrounds, which just happened to be behind the firehouse, which we just happened to live in front of.

Summer is for going to a friend’s house and crowding into the bedroom with the air conditioner. Summer is picking gooseberries and making jam. Summer is harvesting corn and sitting with my friend and all her siblings as we stripped the corn from the steamed cobs all day, followed by a cook out with roasted corn on the cob. When I got older, summertime was a time to paint a porch, go to the Farmer’s Market – without my mother. And I swam, summer is always swimming.

Now I’m older, a real feeb, summer is again reading … and surfing (the net) … and watching really cool videos on the computer. Here is my absolute favorite video:

 

The woman featured in this Ted talk is a real hero!!!

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Score Another for Family Genetics

Posted on July 13, 2011 by administrator

The pathology report came back. Hold on to something – it’s a little weird and very rare. I tend to get those rare and very rare conditions. I’m sure it has to do with my siblings getting all the good genes before I came along. In fact, I’m convinced that my oldest sister took all the good genes. She reminds me of that fact every once in a while. So a strange pathology is not unusual in my history.

from colonista.com

Do you know how the small intestine, large intestine, and colon are arranged in the body? Have a look. The appendix hangs off the connection point between the small and large intestine. At that juncture, between the small and large intestine and the appendix, I had an ulcer. The surgeon took it out, along with the appendix.

I have a really good general family doctor who stays on top of things going wrong in my body. He has seen some really weird stuff over the past few years. Normally when he calls me he is very even keeled, not excited, nor does he convey extreme distress when he wants me to get to the hospital RIGHT AWAY. Maybe it’s just that he had been researching my ulcer right before he called me, but he was quite excited by the rareness of this ulcer. Maybe he reacted this way to my diagnosis of Microscopic Microangiitis on top of Lupus Nephritis, but when he spoke to me it was as if he was relating interesting weather patterns.

There are two causes for this kind of ulcer. One has a fancy name that means “we don’t know what causes these ulcers”. The other reason is the body’s reaction to certain drugs. All well and fine, except I don’t take those drugs, nor anything similar. And – there’s no treatment for this ulcer. No one knows how to prevent recurrence.

I seem to be recovered from the surgery and the fever after surgery. Unfortunately, I seem to be under the weather with something unknown. I’m always tired and can’t think very well. I had lupus lesions about a week and a half ago, but they and the subsequent rash have cleared up. I have a blood test tomorrow and at the end of the month I have an appointment with one of the top rheumatologists in the country.

In the meantime I’m doing the summertime thing – reading science fiction and lazing around the house. If I could find three other people I could play cards. But I don’t have enough energy to make jam.

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Time to Start Again

Posted on June 29, 2011 by administrator

For a while I thought I would start a new blog, under a new URL. My optimism about the lupus being in remission led me right into the oldest of traps. I was sucker punched. I ended up in the hospital twice in the last month. The first was appendicitis and ileo cholic something or other – they took a piece of my intestine that had a blockage. No word yet on the pathology report. I guess what this means is that I’m not done with this disease – or any other.

I am going to change this site somewhat. And I’m planning to add more topics than Lupus. But lupus is with me for the duration – it colors everything I do, eat, and say. So hang on for the ride.

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Two Year Anniversary

Posted on June 1, 2011 by administrator

It’s soon to be two years since I landed in the hospital. To celebrate I went back for emergency surgery: ileo-colic resection and acute appendicitis. These are the times that I know I’m in the middle east. Culture clashes on the ward are common. The Arab population brings their whole village to the hospital when someone goes in. Usually one of the older teens/early twenties are slated to stay with the sicko over night (there are no beds for them, only floor 0r a chair). Along with all the people is a lot of food, chatter, noise. At first it seems charming, but quickly gives way to, “I want to sleep and they are still here at 11pm.”

Lupus is in remission and my kidneys seem to be functioning better. In fact, 8 days on IV has taken my already low creatinine of 3 and driven it down to 2.3!!!!! It won’t last, but the number was nice to see. And compared to two years ago when my potassium was through the roof, the hospital ended up giving me potassium.

I need to reclaim my life. The experiment/phenomena of social media has left me more “out there” than at any other time in my life. This directly contradicts my efforts to be “inside”. Judaism looks at men and women differently. We perform different roles in life. And even if I have tasks that I’m responsible for and my husband does the actual task, I am still the responsible person. When we first came to Israel in 1997 I was already fully into my feminine identity. I stayed home with our five year old, took classes in Hebrew to learn how to speak and maneuver in society, transcripted lectures, and generally managed the house. After several personal fortune losses (remember those stock crashes?) it became clear that I needed to help out with the budget bottom line. That’s when I started technical writing.

Trained as an engineer at a time when the industry was booming, I experienced much more than a normal college grad. In addition, I had to write. I had to tell the story to the non-technical. These skills translated easily in the Israeli market where the engineering is top notch, but the communication skills were lacking. These jobs forced me out of the house, but not full time.

Around 2008 I lost sight of my direction. Instead of staying home, working from home, I gave into pressure and excitement as my employer began to expand. Instead of staying with writing, I moved into management. Bad move. A year later I left to form my own company. Even worse move.

We are now two years after forming my company. We are getting by, but with the illness and the loan situation not being favorable, I couldn’t do all I set out to do. I’m still doing technical writing. And I’m still publishing books (a new one to be released mid-summer). By using social media we were going to take advantage of grass-roots publicity. It meant that I put myself “out there” for two years. I’m sick of it.

Twitter is an amazing tool to spread as much gossip, lies, and some truths through the vast connected network. Over and over I’ve seen people trash others, to the point of slander. I’ve seen people trash company reputations and any other reputation they deem worthy of trash. It is an all around not nice place to visit. I’m saying goodbye. Don’t want to ever be there again.

Linked In has never been a great place for me. I hate sitting online looking at forums. They seem like such time-sinks, with no ROI (return on investment). I’ll leave my professional profile up, only because it is often the starting place for researching people.

Facebook as a business tool works for those who know how to work it. When something goes viral, it really goes. It takes a special personality and almost full time dedication to make it work. I stopped using Facebook sometime ago for business. I now limit myself only to personal contacts, family, friends.

Blogging is also one of the top social media tools. It’s why there is a blog off our French Creek Press site. This blog is also a result, albeit, it is personal and I’m not actively seeking readership.

What I’m trying to say is that I’m tired, I want to crawl into my bed and pull the covers over my head. I’ll come out to work my tech writing contracts. And I’ll come out to publish books as they come. But as of today I’m resigning my place in the social media cloud. I hope never to visit it again. And if it comes up, I hope a colleague is in tow to do the media-ing.

This is my last blog entry. If I find I need an outlet to write, and if I get pressure from you, my family to continue to communicate, I’ll pickup under a different URL. You’ll see it on Facebook.

Thanks for riding these last two years with me. We should all witness the coming of Moshiach in our time, all receive parnassa (occupation), shefa (goodness raining down on us), mazel (luck, as it is in this world), shalom bayis (peace in the house), refuah shlema (complete healing), and many more blessings. Amen.

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Judgement Day

Posted on May 18, 2011 by administrator

I’ve had a block when it comes to writing, or reading technical stuff, or talking, even talking. Today I had to actually get dressed and go out. Today is Wednesday. I last left the house last Thursday. But it was for a good cause.

My rheumotologist pronounced that my lupus is in remission. Yay! That’s really good news. I see my kidney doc next week sometime. Maybe he’ll be ready to take me off the imuran too. We’ll see.

The only drawback to all of this is that I am in much pain in all the major joints. It could be tendenitis, degeneration in the joints, anything except all in my head.

More docs, but maybe, soon, no docs? HAHAHAHAHAHAHA

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Good News

Posted on May 5, 2011 by administrator

It hasn’t been a month since I wrote my last entry, so I’m not feeling very guilty. On the other hand, I had so many topics running around in my head that I was surprised that I didn’t churn out another 10 entries by now. The ability to focus on one topic was lost to me. Along with that I generally haven’t been feeling top notch. It seems that for the last month or so I’ve been spontaneously loosing the contents of my stomach. Last night was so bad that when I started to eat I thought everything was fine. Literally moments later I was running to the porcelain receptacle, hoping to make it in time so I wouldn’t have to wash the rug in the hallway. How bizarre. I normally have some kind of warning.

I saw my regular doc on Tuesday (I haven’t seen my kidney doc for a while; the hospital doctors are on strike). We discussed possible reasons for this strange phenomena – but had no real answers. Off to do another blood test, this time it had the proper code for my creatinine level – the last two didn’t. He thought I might be reacting to Urea in the blood, which is known to cause this loss of stomach. If that was the cause it didn’t bode well. That would mean my kidneys were on a downward trend. Oh, and my entire body has decided to ache or send stabbing pains through my joints – all of them. So, blood test, would it reveal lupus activity? Or were my joints destroyed by prednisone?

Got the test results this afternoon. My creatinine is at a new, all-time low of 3. That’s right, 3. The lowest it’s been. Happy dance all over. Then crumple under the pain. But that’s ok. I don’t have to go back on the prednisone!!!!!!!

It is clearly a miracle! My kidney doc didn’t think I’d recover at all. The last time I saw him I told him my next goal is to break the 3.0 barrier – I want to see numbers under 3. He laughed. I hope he laughs even harder when he sees these blood test results.

All of you who are davening and praying for my recover, please keep doing so – it clearly works. I’m not yet out of the “catastrophic category” yet, but I’m close. And to my sisters who have shown me how to persevere, I can’t thank you enough.

Ah, my doctor just called. I may have spoken too soon about the prednisone and lupus activation. It seems some of the tests are showing that lupus may be on the way up again. Oh well. It still doesn’t take away from my kidneys!

 

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