Shortchanged?

Someone asked recently if my kids are being shortchanged because of my disability/chronic health issues.

My kids have a different childhood or experience in life than other children do, but that would be the case if I weren't chronically ill.  No two children ever have the same childhood, even within the same family.

In some ways, my kids get away with more, have less responsibility (I actually worry that they don't have *enough* responsibility at times since I have cleaning and household help doing things they could be because I don't want to overburden them) and more privileges.  They may be more independent, but in what I think is a healthy way.

We have a car since I can't manage buses, which we certainly wouldn't have if I were well.

Things are different for them growing up than for other kids, but their childhoods are how they are supposed to be. He put them (us!) in this situation. He tailormaid it for all of us. Each of them are in the family He put them in, at the time He put them and given the childhood He planned for them.  God doesn't shortchange any of us.

My father was sick and died when I was a teenager.

I certainly wouldn't wish that on my children, but it was the childhood that made me and my siblings who we are B"H.

My kids are B"H ke'h happy, well adjusted children/teenagers who understand chessed, doing their part, invisible illnesses, the need to plan ahead and not leave things for a last minute rush, but also that we aren't in charge. Plans sometimes have to change and we have to be flexible.

My kids are definitely more responsible than if I were running the ship without needing their help at all.  One of my teenager is at the store now getting them to replace her little sisters shoes, which we bought three weeks ago. The sole came off so she volunteered to go and get it taken care of.    My other teenager is in the kitchen shaping challahs.  They know they need to help at times, and they chose these jobs today.  I am happy, they are happy and the house is B"H running smoothly.

Are they shortchanged?  I certainly don't think so, and neither do they.  Yes, they are spending half an hour out of their afternoons helping out the family, but in exchange they are getting life skills, pride in the abilities to get things done, yummy challah, a happy sister and a proud mother.   The littles sitting and playing Monopoly together don't look too upset about their lives either.

But most importantly, more than any of the other things I wrote about, my children know they are loved.  How can anyone be shortchanged when they love and are loved so much?

Thinking about death

God willing you and I have many many good years ahead of us, but recently I have lost too many close to me and I have other friends facing serious, potentially life limiting diagnoses.  I have found that most people don't even want to talk about or think about death, especially not their own chv"sh.

Leaving behind loved ones, children, spouses, and all of our dreams for the future seems impossible, yet it happens.  Even the thought seems too painful to contemplate.

When my father died I was a teenager. It was one of the hardest things I have been through.  The pain is still raw almost 23 years later.  But the pride and love is also strong.  I know my father did everything he could to take care of us and make the transition to being without him as smooth as possible.  He made sure my mother understood the finances, that they were in order and that financially we were in a decent position.  He wrote his own obituary so she didn't have to do it.  He bought his cemetery plot, made arrangements with the chevra kadisha and he even bought the wood for his casket, bought beer and invited his friends to come over and build it with him.

They refused.  He knew his time on earth was limited, but none of us were ready.  I can't say I am even now.

One of his friends did take the plans and the wood and built his coffin the day he died, before the burial.  I took the obituary and the fax phone numbers left and sent the faxes off.

The technical details were all taken care of and most importantly, we all knew we were loved and cared about.  We all knew that my father had done what he could to make things as easy as possible because he knew we would be in pain and he loved us and wished it weren't so.

He wasn't afraid of death, but he was sorry about the pain that goes along with being left behind because he loves us so.

Not all of us will be given that opportunity to prepare.  It is a gift, a heart wrenching and painful gift, to know that our days are numbered.  The opportunity to spend time with family, make preparations and make the time count, knowing it is limited.

But all of our days are numbered.  No one lives forever.

I believe that talking about our mortality can make us more human, leaves us more prepared and helps us live a better life.  What do we want to take with us when we leave?  What do we want to leave behind?  Who are we?  What is our potential?  How are we affecting those around us?  Are we making sure that those we love know how much we love them?  Are we living a life that pleases God?

Gratitude - the goal.

Sometimes it is so easy to be grateful.  Things go the way I want them to, people help in a way that is easy to appreciate, intentions and good and so are the results.

Sometimes it is just hard, especially with close family members and jobs I would rather be doing myself.

I have to work hard to keep from snapping, grumping, and being ungrateful for a job being done, but not the way I would like it.  But it is done and I couldn't do it, and their way is okay.  Maybe not as pretty, but totally functional.  

So I am working on it.  I am working on smiling when I want to cringe, saying thankyou with a full heart and appreciating even the things I wish I could have done myself.  

Can I play hookey from my body?

I really just need a day off.  I have been up since 7am, got the kids out B"H nicely and should have gone for blood tests.  My body is twitchy, I feel like an electric current is running through me, I am having heart palpitations, yet I want to hibernate.

I did blood tests and went for IV yesterday.  Today I want to stay home.

Urgent blood work needed to be sent off by 9am.  It is 9:12am and I am sitting at home blogging instead of leaving.  The latest time for blood work, without going to the ER is 10am.

It is so tempting to climb under my covers and tune out the world, but my body insists on coming with me and reminding me it isn't happy.

Making life a little sweeter

One of my goals is making good sweet memories for my children:  family fun, quiet time together, puzzles, cuddles, and happy memories.

Pesach (Passover) is on its way.  That means a lot of cleaning, cooking and potentially a lot of stress.  We do our best to keep the preparations for the holidays as fun and stress free as possible, but the kids do have to lend a hand and do a good deal of work.  The holiday cooking is also a lot of physical labor which I can't do on my own.  Our custom is to use minimal processed foods and we peel all of our vegetables and fruits.  We cook everything from scratch.

We have lots of fun, and lots of good food.  Homemade ice cream and fruit for breakfast, potato kugel and sponge cakes, meringues, homemade chicken nuggets, and lots of roasted root vegetables.

But every year one of my kids complain that they don't get their Shabbos treat.  Cake isn't good enough, ice cream isn't what they want.  I have tried making candy out of boiled sugar, bought honey just for candy making one year, and so far, never found a good sweet solution that made everyone happy.

Util now.  I realized tonight that cotton candy needs just one ingredient, sugar, which we use.  So I bought a new toy, one we will use one week a year and one week a year only.

I can't wait to see their faces when it arrives and I can't wait to make some sweet, sticky, and hopefully long lasting happy memories over the holiday.  <3 nbsp="" p="">

"Sheesh! They need to lighten up - its just cancer."

This was a line from a magazine column.  The lady writing the column is sharing her journey through cancer treatment, surgery, chemo, external beam radiation and all of the emotional ups and down that that entails.

My friend was really upset about the line.  She was offended and felt it was insensitive.

I read the same article and didn't even blink at the line, to such an extent that I wasn't sure if I had actually read that weeks column.  I had to go back and find the magazine to re-read it to realize I had.

The following was my reply to my friend:

I sympathise with your reaction to the line you quoted, but I also think I understand where the author is coming from as well.

Sometimes when people are going through them, they make light even of serious things. If you don't laugh you have to cry and laughing is more comfortable.

I was at a consult with a surgeon who wanted to do less of a surgery than the first two surgeons I had consulted with. I asked him why, and he said "I am not going to answer that since you won't understand anyway." My reply to that was to laugh. I am an intelligent and informed patient, so his answer seemed absurd to me. His response to my laughter was "this isn't funny, it is cancer!" and that had me laughing so hard I had tears running down my face.

To this day, whenever things get too much, all anyone has to say is "this isn't funny, it is cancer!" to start the laughter flowing.

Mind you, the doctor was wrong, he would have been leaving behind cancerous nodes with his abbreviated surgery. B"H I didn't go with him!

I lost my father to cancer when I was 15. I have had cancer. My brother had cancer. My grandmother had cancer. My MIL has had two kinds of cancer, one of them two times.

I take cancer seriously, but it is only cancer. It isn't my emunah (faith) or my kesher with HKBH (relationship with God). It isn't even my ability to laugh or smile. It is a nisayon (challenge), and not a pretty one, but if I had a choice I would take it over severe mental illness chv"sh (God forbid) or brain injury.

I am not downplaying cancer chv"sh, but if it is the nisayon I am given, I will try to get through it with a positive attitude, even if that makes it seem that I am not taking it as seriously as people on the outside would like.

 Cancer is serious.  It is messy.  It is horrible.  I hate cancer.  But it is also me.  It isn't something I can leave behind because it has changed me and how I must live my life.  It has robbed me of my father.  But I can't let it steal my sense of humor, my ability to laugh or my smile.  It has also been the reason I met some wonderful people and given me perspective on life that I wouldn't have had without it.

You know, miracles happen every day, but often we just don't notice

Today, thank God, I had open and obvious miracles.  With a bit of work, and a lot of flushing, my doctor was able to get things moving through my port again and even get blood return.  According to the laws of nature this shouldn't have been possible, but He can make even the impossible possible.

So, I am still on sepsis watch, will have to run to the hospital even on Shabbos if I start running a fever, but I know He can get me past this safely as well.

Now if only He can stretch my refrigerator.  With the holiday of Purim Sunday and Shabbos tonight, well I need a miracles to get everything in there.  We have 72 bagels in the freezer, 50+ bags of chocolate milk (they are the cutest Israeli thing, single serving size bags of chocolate milk) and about 6 lbs of cream cheese in the fridge.  It is stuffed with things to give out on Sunday, yet we need room for our Shabbos food tonight.
Maybe He will just make people extra hungry so there aren't any leftovers.  That would work too.  I don't get to order my miracles up specially, though sometimes I try, I just get to appreciate them as they come.

I am scared

I am davening/praying that this ends up okay, but I let down my guard and I am worried.  My port was used by a new nurse who I had been told was "central line certified" though it turns out she was nice but plain old clueless and I was feeling bad enough not to be on top of things as I should.   I came home too exhausted to go upstairs and fell asleep in my recliner.  I didn't get to bed until 5:45am.  When I put on my nightgown I realized my shirt was soaked with blood, but she had apologized for getting blood on my shirt, so I still didn't wake up enough to look at my line.  It was only this morning that I realized she had taken off the clave (a vital part of the line that serves as a valve that keeps bacteria from getting in  http://www.icumed.com/products/infusion-therapy/needlefree-vascular-access-devices/microclave-clear.aspx) and that the tubing had blood in it, which even without the clave on shouldn't have happened except the line wasn't even clamped until I thought to check it while driving home.  The only thing that kept me from bleeding out was a swabcap, an alcohol filled cover which is meant to be an extra safeguard over the clave, not a cap or stopper at all.

I called my doctor and we weighed the risks of the port clotting off because of blood in the chamber (which there likely is since there was blood in the tubing) vs the risk of central line infection and we decided that the safest thing was to pull out the needle to try to reduce the line infection risk.    Line infections are a big deal which we have many precautions to try to prevent .  They can, God forbid, easily lead to sepsis and death.

I am worried because both possibilities, God forbid, still exist.

Please pray for me, Chaya Liba bas (daughter of) Sorah.

Thank you! You totally made my day!!

I got to the hospital early, knowing that finding a parking spot is usually difficult.  Before I had time to even look for a spot or get the least bit frustrated with the lack of places, a man walking next to my car smiled at me, showed me his keys and motioned to where his taxi was parked, offering me his parking spot!

He totally made my day.

I blessed blessed him with good health and nachat ( joy or blessings, pride especially from one's children or grandchildren.) and am still heaping blessings on his head even though he is far away and I don't even know his name.

Sometimes small kindnesses go a very very long way.

I also got to visit with my friend Ahava Emunah today, which was really special.  The visit wasn't long enough, but her smile lit up my day.

I am so blessed to run into such wonderful people. 

Ultrasound, tumors, friends, and soup

Happy birthday to my wonderful husband!!  You should live until 120 in good health and happiness!

I had my quarterly ultrasound of my neck this morning.  I went with a good friend which made it much more pleasant.  The ultrasound was pretty quick and easy B"H.  The tumor is my right parotid B"H didn't grow, though there is now one in my left parotid too.  Symmetry isn't always good, but at least it is symmetrical.  Neither are in good places to biopsy, so we will keep watching them.

From there we went together to urgent care.  There was a bit of drama.  My nurse was working from 4pm instead of until 4pm.  I while I was checking in and the head nurse saw me and realized she had made a mistake.  The conversation was like this

S: Oh no, Liba, did I tell you your nurse was working morning?
L: Yes
S: Oh no, she is working from 4pm, we thought about switching her to morning, but we didn't.  I am sorry, I feel bad.  No, I don't feel bad I did my best.
L: You could feel a *little* bad.  I guess we will have to try to find a vein instead of using my port since I can't come back.  It is all bashert.

Whether she thought she should have or not, she did feel bad.

I know because minutes later a nurse I have never met walked in with her, and she told me that nurse "new" is also certified in using ports.  She works in another urgent care branch but was B"H in the main branch for a training course this morning!   Someone who didn't feel bad wouldn't have gone to that extent to find me a port certified nurse!

And because of this "mistake" I found out that the other location has *two* nurses trained in using ports.  I have another option, besides the ER, when my nurse isn't available!  Totally great and exciting news B"H.

And I got home at 1:10 - with enough time to heat up the soup for lunch and put a pan of baked ziti in the oven before the kids walked in.

While lunch was heating I started googling to figure out who to get in touch with in the closer urgent care branch so I could find out if they can do my calcium blood tests there too and found out that the medical director and I have a mutual friend!  I emailed her:

Hello R,  

My name is Liba and I live in [my city]. H.G. is a friend of mine. I have surgically induced hypoparathyroidism as well as Crohn's disease. I have been getting calcium infusions via my port in Terem X, but there is only one nurse who is certified in port use and she is only there part time. Today there was a bit of a schedule confusion and one of your (very sweet nurses) was B"H able to save my day. She was there for a training course and was able to give me my infusion. I was told that she and one of the other nurses in your branch of Terem are both certified in port usage. She wasn't sure that you could do calcium blood tests in the your branch though. Someone else suggested that there is a "stick" that you would have to order to do so in the machine you already have, but that it should be possible with some advanced notice? I would be happy to rely on the kupah blood test results if you can't test there. Typically I need my IVs 1-3 times a week. Often I end up in the ER though because many days the one nurse port certified nurse in X isn't available and that is something I would prefer to avoid. Thank you in advance, Liba

And B"H she wrote right back, they can do the tests, have the slides for five tests and can order more.  She was really sweet.  This means I have another option besides the ER, which despite their recliners and occasionally pleasant doctors, is still a place I prefer to avoid.

How awesome is this?  He pulled a lot of strings to make this work out so nicely and neatly!

And now my 9 year old is making chocolate peanut butter hamentashen.

http://overtimecook.com/2014/03/03/peanut-butter-filled-brownie-hamantaschen/

All in all, a good day B"H, one I saw God's hand in and clearly felt His hugs and care.

ER upgrade!

Today I had a 5 star Emergency Room experience.  Did you know such a thing was possible?   I didn't!

Within five minutes of arrival blood tests were ordered and we had results from the first round less than two minutes later!

 And they added recliners to the ambulatory ER waiting/treatment area!  They were comfortable and plentiful.   

I had the sweetest volunteer for my EKG and things only got better when I met the doctor.  She was nice, smart and an English speaker.  She was impressed with my knowledge of what was going on with my body and my disorder.  She was respectful and interested and totally excited to call in a team of medical students to check out my "classic" symptoms and neurological responses, things they learn about in school but don't get to see often.

Today I was a teaching tool.  They cleared a room to put me in so students could come tap my face, check my reflexes and discuss my history.  I felt a bit like a trained monkey.  I am all for teaching students, but it was uncomfortable none the less.  "Tap here and her face twitches" is a bit awkward, not what I am normally excited to be known for.

Most importantly though, I was home before my kids were B"H!  They have no idea I was gone all morning.

I should have asked for a second set of blood tests and a second round of IVs to get my labs closer to normal values.  If I had asked they would have done it, but I was torn.  I am out of danger for the minute but will need IV again in a day or so, which means another trip to Jerusalem for another ER or urgent care visit.

In the end stability reigns in my house for today B"H.  My kids know I am not well. I am not hiding that from them, but my ER and urgent care visits worry them.  Coming home to find lunch and a mommy makes a huge difference to them, so I make myself into a pretzel to be here when they get home if it is at all possible.  It is always exciting when it B"H works out on a day like today.  It isn't usually possible to get out of the ER in a normal time frame.  

Potato kugel with love

Friday it typically a rushed and busy day around here.  We are busy getting the house pretty, the food cooked, everyone bathed, the table cleared off from their weekday projects and set with china and our best silverware, the lights on that need to be on, toilet paper ripped, the lights off that need to be off and often kids moved around from room to room and one of their rooms made up for guests.

But everyone pitches in and it does all get done B"H.

One of my daughters peels many heads of garlic for roasted garlic each week, another takes care of the table and sweeping the floor, a third peels all of the other vegetables I need to cook with.  They open cans, they polish silver, the list seems endless at times.

And in between other jobs they take turns grinding potatoes and make potato kugel for Friday lunch.

It is hot, it is yummy and it makes everyone smile and willing to work happily, together, getting their jobs done.  The kugel keeps the team fueled and working together.

The total sum of some potatoes, eggs, onions, salt, and oil is full bellies, big smiles and something to look forward to in the middle of a busy day.

Catching up after many months, a couple surgeries, a new medi-port, a great retreat, and new friends made

It really has been too long since I wrote!

It is funny, life is B"H really good.  I am happy.  I always prefer to smile over frowning and yet my blog was getting me down - so I put it away for a while.  There really is so much good going on in my life, so many wonderful people and so very very much that I am grateful for.

I wasn't doing well with the fact that my blog was becoming more and more about my challenges and difficulties.

True, my life is full of those too.  Chronic medical issues, acute medical issues, they can easily take over, but are they what is important about my life?  Certainly not.

B"H I have my family, my kids are growing up so nicely and so quickly!  I have a supportive community.  My car is chugging along taking us where we need to, and sometimes even where we want to, go.  We have the help we need around the house.  Hey, we have a house  B"H!  We finally, after 8 years of talking about it, managed to rewire the house and upgrade the electricity.  My tumor markers are low.  We discovered Ikea and finally have mirrors and bathroom cabinets.

I went on a rest and recover retreat with Beit Natan last week.  One of the workshops was about expressing ourselves through art.  We were given paper, plasticine clay and paints.  The clay was to be our body and the paint how our soul relates to our body.  It may be hard to tell from the picture of my picture, but this is what came out for me.  The pink is my body, doing what it wants, when it wants and how it wants.  It is interesting, but it does as it pleases.  There is a red heart there as well, red for life, but also for pain.  Above it all though, more important than any of the rest is my soul, my joy in life and my ability to live and love and serve HaShem despite the state of my body.  So much more important is it, that it is hard to see my body through the paint that represents my soul.

This is my front yard.  My husband planted the flowers for me, most of them almost a year ago!  Some hibernated over the winter, but they are back now and most are much much bigger.  The irises have been blooming, mostly one flower at a time, since December.

Every time I leave my house and every time I return I get to see this tangible show of his love and support for me.  When we got married my husband didn't know a trowel from a spoon, yet when I wasn't up for gardening but really wanted things growing, he stepped up and figured it out for me.