The vanilla is gone!!

Before I got sick, which is starting to feel like a lifetime ago, I went through 2-3 liters of vanilla a year.  When I got sick that changed pretty abruptly.  I had the same open one liter bottle for the last three years.  It was half full a  few months ago, and now it is gone.

The kids and I did a lot of baking this summer.  They are now great helpers, able to follow recipes and happy to clean up, and I am having more good days when I can work with them in the kitchen.

We have 101 new cookie cutters, a bunch of good (some very messy!) recipes and a lot of good memories. They are learning life skills and I am learning to let go and give them the chance to play, learn, make mistakes, make wonderful creations - and clean up.

I just opened up a new one liter bottle of vanilla and am curious how long it will take to finish.

I also think it is finally time to replace my mint extract.  I bought it in bulk during the good old days when it didn't seem to last a wink, and it sat so long that it isn't good any more.  I am sure the children would enjoy being able to expand their recipe repertoire and I would love some chocolate mint brownies.

Procrastination pays off!!

I have a whole bunch of blood tests that I need done.  Very few of them could be done through the local clinic.  Most of them had to be done at the hospital, and not just one hospital but two hospitals because each one only does some of them.

I had approval for the tests at one hospital (SZ) and was waiting on the approval for the ones at the other hospital (EK) since Monday.

I was near the first hospital Wednesday (SZ) and decided to go on the wild goose chase trying to figure out where to go to get the tests done and what I was going to need to do.  I found the office of the secretary at 1:03pm but of course it had closed at 1pm.  I managed to find the lab manager who sent me to a different lab and in the end I found out the rules.  The lab is open for draws between 8am and 9:50am Sunday-Thursday, the secretary is there until 1pm (exactly!) to answer questions and hopefully get test results eventually.

I decided yesterday and I was going to go today and do the tests, but this morning I was just too tired.

This afternoon I got approval for most of the tests at EK.  One wasn't approved and when the doctor checked into why it was causing the problems we found out was because it had been incorrectly entered for the wrong hospital.  The test is actually only done in SZ.

If I had gone to SZ this morning I would have had to go back next week anyway.

Now I have to figure out where to go in EK and if it is physically possible to go to both hospitals in one morning within the hours that the labs are open for outpatient blood tests.

It is worth a try!!

Summer is a splash

My kids may turn into fish before summer is over.  I need to find a way to get the sand out of the bottom of the pool though.  The filter just isn't cutting it.  We keep having sand storms and the bottom of the pool is taking the brunt of it.  I can't keep my car clean either.  It is just part of living in a desert country.

I have another consultation in the hospital I prefer to avoid on Sunday.  I am sure it will be fine, I am actually less anxious this time than I was last time, but then again it is only Thursday.

My calcium levels are low now, but I am not so miserable with low calcium symptoms unless I do too much B"H.  By evening I am a bit tingly and twitchy just from getting through the day, and I know my levels are low without blood tests, though I am a good patient and do them none the less since the doctors like to see numbers.

I am back to baking a bit.  I forgot how easy it is even with my limited energy, especially with my new flour sifter!  I sift three kilo (6.6lbs) of flour at once and keep it in a big bag in the freezer for easy baking.  Jam squares take minutes to get into the oven and brownies are just as quick and easy.  Swimming makes the kids hungry and their friends don't mind a treat either.  Plus, I can sneak in whole wheat flour and pretend it is healthy.

It is nice having everyone home, though I am sure by the time summer vacation is over I will be more than ready to send them back.  I still have to wash and iron all of their new uniform shirts, buy all of their school supplies and cover their books.  Maybe this is the year I will manage to teach them to cover books.  Any which way I am glad we have plenty of time to get it all done without pressure!  Relaxed summers with happy kids are a real blessing.

I need to live forver

My fathers 21st yertzeit (anniversary of his death) is this coming Sunday.  I had just turned 16 when he died from colon cancer.  Not only have I been without a father for the majority of my life, but I have a 14 year old, and it struck me this week that she is so so close to the same age that I was when I lost my father.

And yet, I still don't have a will.  I have no one that I am ready to appoint as guardians for me kids.

My husband and I need to live to a good old age.  There just isn't a choice.

One sister in law might be willing to be put down as guardian on our will, she is responsible enough that I would trust her, but she has a house full of her own kids and doesn't think she is up to dealing with the medical issues.  She isn't local, so it would be a huge upheaval for my kids.

I can't even get a babysitter for my tube fed son so my husband and I can get away for a night together.

Email, protocol, confusion, kids and me

So my new endocrinologist did email me!  My patience did pay off.

One of the things I had asked him for was protocol for what to do when my calcium is low.  I got an answer, but what he feels is standard is something that has never happened in 3 years of calcium issues for me.  His protocol would likely work, but standard?  I wish.  I am quoting it exactly as I received it.  The English isn't great, mostly typos I am sure, but English is his 4th or 5th language so I am willing to cut him some slack either way.

The protocol  of treatment of hypocalcemia is standard, and written in every manual of emergency room.In cases of symptomatic hypocalcemia, it is recommended to give IV CALCIUM GLUCONATE : one vial (10 mg/ML) witihn 10 minutes, may be repeated once or twice untill synptoms resolve, and thengive an infusion of 5 -10 vials of  with solution  dextrose 5% 500-1000 cc WITHING 6 - 12 hours, respectively.

Until now my "treatment" has always been 2 vials of calcium gluconate over 1 hour, and nothing after.  Those "extra" 5-10 vials might be the difference between feeling better for a day or so and feeling better more long term.  Any which way, it has never happened that way, standard or not.

On a more fun, or at least less medical, front, we are getting into a good vacation groove here at home.  The kids and I figured out that having a set clean up time at the end of the day keeps the house in order while preventing me from asking them to clean up at random times throughout the day when they would rather be doing other things or are in the middle of projects.

We all like starting the day with a clean table and a nice house, and they are much more willing to help when it is scheduled in and they know it is coming.

It is funny that it took me so many years of parenting to realize that just like they do well with a schedule for everything else (I don't even say nightgowns any more, I just say, "it is 7 o'clock!") that cleanup could be scheduled too.  So cleanup time here is 6:30-7pm and all is well.

With all of my hormonal imbalances and my inability to exercise I have gained quite a bit of weight over the last three years.  Often I just don't have energy to care.  Right now I do, at least a bit.  I am trying to eat more healthfully, but it is hard.  I need foods with fat to absorb my d3/alpha d3, food to absorb my calcium and chocolate is a comfort when life is hard and I don't feel well.  Most healthy foods are high in phosphorus, but then again so is milk chocolate.

I have to figure out how to motivate myself to take better care of me.

I am not liking the decrease in medication

As of Wednesday I am back down to my old, lower medication dosages and am getting more and more numb and twitchy.  I don't think it is going well.  The worst part is, my new endo, who asked me to email my lab test results to him last Thursday, hasn't even acknowledged my email.  I asked him a couple (important) questions too, so I am a bit disappointed.  I have no way of knowing if he got the email at all, if it got lost in cyberspace, the hospital's email server is down (it happened once, and lasted weeks!), if he is away on vacation, too busy or just not interested in writing back.

I need to feel better now so I am tempted to go back to the higher doses.  The girls first day of vacation post camp was today.    My son has a pre-op appointment is Thursday and I have to get his blood tests done tomorrow.  He has shot appointments tomorrow too.  Since he is still in camp that means driving him to school/camp in Jerusalem after and then again on Thursday as well.  It is going to be a busy week and I can't afford not to be feeling well.

If I haven't heard back from the new endo by tomorrow evening I think I am going to try to call him Tuesday, just to make sure he got the email.  This patient is running out of patience.

Almost normal

My medication changes seem to have worked, my calcium is just below normal.  My phosphorus is still high though.  Now my new, intelligent endocrinologist wants me lowering me medication doses back to my old doses and the endocrinologist who works in my health clinic, and takes me insurance, thinks I should stay at the new doses forever.

Their goals for my calcium levels are drastically different as well.  The new endo/calcium specialist wants my calcium between 7.5-8 (normal is 8.6-10.2)  the endo covered by insurance says 8.6-9 (normal again 8.6-10.2).  New endo says that high doses of oral calcium and alpha d3 and hypoparathyroidism puts me at high risk of calcifications (bone, brain, muscle), kidney damage and kidney stones.  The insurance endo insists that those things only happen with high calcium levels, not low normal.

The problem is, I trust and respect the new endo, but seeing him regularly and paying out of pocket is an expensive proposition.  I was hoping to get the two of them to work together.  I gave the insurance endo new endo's letter, with the goals and all on it, but it didn't do us any good at all.  She barely even skimmed it.  When she was done "reading" it she asked me questions that proves she didn't read it at all.

So now I have to pick.  I can't listen to them both, and I can't keep seeing them both and ignore one.  I just doesn't work.  My obvious inclination is to stick with the calcium specialist.  I trust him. The low calcium level goal makes me nervous.  He agrees it may not be compatible with a good quality of life and we may need to increase my levels to keep me feeling okay.  I just wish he took my insurance.

The difference between how I feel at 7.5 (last week) and 8.5 (today) is just incredible.  I cleaned up my kitchen last night after I came home from date night with DH, ran errands and had doctors' appointments this morning and I still feel okay.  I am a touch numb and definitely tired, but normal people tired, not sick and broken tired.

Date night!!

I bought a great group buy voucher to a restaurant I have wanted to go to for a long time but couldn't afford.  I have reservations for tonight and am looking forward to taking my husband out.  After all of the help he has been the last few weeks, months, years, he deserves a bit of celebrating.  I have deemed date night better use of my energy than folding laundry.

We really could use the time to re-connect.  I am tempted to leave our cellphones in the car and have a long and uninterrupted meal, just the two of us.

:D What a mess!!

After three weeks of being sick I B"H feel well enough to care about the mess.  We did have company, both my mother in law and my mother were here visiting during parts of the time I was sick, so my family was more motivated to help keep the house presentable, but there is still a lot to do to get the house back in order.

Today I had a handyman come and fix the shutters that broke weeks ago.  I had him fix a bunch of other little things that broke while I didn't feel well enough to care.  It was one huge step in putting the house back together.

I am excited to feel better enough to care, but am trying to temper it, so I don't overdo and get sick.  My numbers are better, but they aren't good or normal.  It won't take much to push me back off kilter.  Plus, the kids are on vacation, there is no way to keep the house up to snuff during school vacation.  The best we can do it straighten up midway before the day and before bed and make sure the house is clean on Friday afternoon.

"Cleaning while the kids are little is like shoveling the sidewalk while it is still snowing."  It may help, since it will be easier to shovel/clean later, but the perfect end result isn't obtainable or even ideal, especially during vacation!

The good news is, we got a new, bigger, better pool (13'x7') pool this year.  The old one got holes and it had gotten a bit small for my kids and their friends, so this is perfect.  The house stays a lot cleaner, even with friends over, with everyone outside in the pool for hours most every day.  We are also able to keep the air conditioning off a lot more.  It has been a hot summer, so the pool is great!

My kids are (in my opinion) growing up to be such nice, happy and well mannered people and that makes me such a happy mommy.  No matter what is going on, that is the main thing.  Not the house, not even how I feel.

B"H (thank G-d) feeling a lot better

I just wanted to check in and say, I am feeling a lot better.  Three weeks later, I think I am B"H finally getting over the after effects of the stomach bug.  My calcium levels have come up to just a bit below normal (which is great for me!) and I am barely twitchy, my heart doesn't ache, I am not having any major pins and needles and am overjoyed to be feeling okay.

I would love some sleep, to catch up on the rest I missed, but had to be at the doctor's office for blood tests before 9am today and don't see much sleep in my future.  Tired and feeling okay is a lot better than tired and feeling awful though!

Baruch Dayan Emes - Blessed is the True Judge

Chaya Heller (Chaya bas Simcha), who ran my cancer support group and organized the annual retreat (through Beit Natan) for women with cancer, is no longer with us.  She had MS and got pneumonia which she just couldn't fight.  She was young, her youngest daughter still young and single and will be sorely missed by so so many people.  She has left a hole in my heart and in this world.

It is hard to grasp the idea that we won't be seeing her again in this world.

Too good to be true? It seems not!

I saw the new endocrinologist today and am really impressed.  He really knows about calcium disorders.  I have never before had a doctor who left me feeling that they knew more about calcium issues than I did.  He was confidant but not cocky, nice, listened well and also read my old medical records.  He acted as if he had all of the time in the world to get my complete history and answer all of my questions.  The visit lasted an hour!  By the time I left the patient after me had been waiting for half an hour, but he never made me feel rushed at all.

He is ready to deal not just with my calcium issues, but my thyroid medication as well and is ready to be in charge of "watching my neck" too.

The icing on the cake is, he answers emails and expects me to email him instead of coming in for every question and medication change!  He is willing to manage medication adjustment and blood tests through email.  He has asked me to email him with my test results next week and the week after that and would only like me to come back in two months for my next visit!

I feel totally blessed to have found this doctor, no matter where he is located.

Improvement, and getting ready to go!

My appointment is this afternoon!   I have my papers in order, lab test results printed out and B"H a friend who volunteered to meet me there and keep my company.

Right now I have challah baking in the oven and gave the kids lists of jobs to do while I am gone and what I will pay if they do them.   I don't usually pay for helping around the house, but it would be so nice to come home to the house cleaned up and ready for Shabbos without any fuss, so I decided to give paid chores a try this week.

My calcium is stable for now, at 7.8, three blood tests (four days) in a row!  Normal is 8.6.-10.2 and in the past we did IV calcium for numbers under 8, but I am feeling relatively good and certainly don't want daily IV calcium infusions if we can avoid them!  We shall see what the specialist says, but I am just happy to see stable for the first time in a long while.

God willing I will update later when I get back.

Back and broken

Things were stable for quite a while.  I was only needing IV calcium once or twice a month, down to weekly blood tests and just feeling relatively stable, as long as I didn't do too much, which for me is great.  

Then I got a stomach virus.  It was a horrible three days, but for what ever reason, even after the virus was gone I still couldn't/can't get my calcium levels stabilized.  They are low even with IV calcium, and increased medications to a level that I have never been on before. IVs are making me feel better for a day to a day in a half, but highly ineffective overall.

I am a human pincushion, but with only two good veins.  They don't even have to feel for them at this point which makes life easier. 

The good news is, I found out that our 24 hour urgent care center (Terem in Romema) does calcium blood levels!  The bad news is, now that my doctor knows she happily sends me there weekends and there doesn't seem to be a way to get out of there in less than 6 hours, sometimes more like 8.

The bad news is, my low calcium isn't just causing me incredible numbness/pins and needles and muscle twitching, but the "anxiety" that I was told was a common side effect of low calcium is actually my heart complaining.  Hearts rely on calcium to recharge and beat and my ECG shows changes from low calcium.  I have both a long qt interval and repolarization problems.  My heart feels achy and I can feel it beating since it is having trouble doing so when my calcium is this low. 

I have been looking for an endocrinologist who can help, since my current endo really isn't a calcium expert and it feels like this is all out of her league.  I think I may have found one, but he is at a hospital I prefer to avoid.  We had horrible experiences there with my son.  They almost killed him more times than I would like to count.  This endocrinologist's specialty is calcium disorders though and that is quite rare.  I made an appointment for Thursday and have to put on a brave face and go, even if I don't want to.

I am feeling so so broken with my calcium not coming up and the intense discomfort and chest pain, but hopeful that we can get my levels under control and have hope of getting a plan to keep this from happening again or at least fixing it faster if it does. 

I bought a car and other updates

I just got a friendly note asking me to post. Thinking about it, she is right, I have a lot going on and have been remiss with updating.

First exciting news, we bought a car last week! It is a decidedly used, six year old car, but it has already made a huge difference in my quality of life. I can go and do so much more easily. Even errands like buying the girls tights are much less stressful. We have had quite a few appointments recently and cabs were adding up and terribly inconvenient as well. I am so happy to have my new wheels.

I have a new hobby. I have decided to learn Hebrew grammar. I have been living here for six and a half years. I generally understand what I am hearing, people understand me most of the time, but my grammar isn't great and I sound like an ignorant immigrant. Immigrant I may always be, but ignorant I would prefer to leave behind. This is something I can do from home and though I may not always enjoy it, I now have homework to do with the kids and they are all proud of me. As a side bonus, I have a lot more corny jokes to tell the kids.

The Beit Natan retreat is next month and I am trying to decide if I am going or not. Since we bought the car money is really tight but I could really use the time away, seeing friends who understand and some me time. My son has (relatively minor) surgery scheduled for the day after the retreat, so the timing is pretty close to perfect. If the surgery was before it would have been harder to leave.

I just started a new thyroid medication. The old old one they stopped making. The old new one made me nervous, it didn't look right and I didn't like how it was a different medication but they tried sneaking it in with similar packaging and the same name, so I stocked up on the old old one when it was still in the pharmacies. I take both 100s and 50s of the medication and just finished the old old 100s, never took and old new 100 at all since I stocked up so well! I did have to buy a bottle of old new 50s and will be finishing those in a couple days. Today I started the brand new 100s and they look nice. Time will tell with my blood test results, but except for the fact that they are made in Germany, when I had been told the new medication was coming from the US, they seem great to me!

I am still having trouble with numbness and my calcium levels, but I am learning to live with my limitations. The less I do the better I feel, but I have to balance that with living life. I have letters together and forms filled out to get a handicapped parking tag which I have high hopes will help me function on a higher level. Being able to do errands and take care of my family more easily is such an emotional boost. Getting to appointments more easily is nice side benefit.

All in all, I am going to try to update a bit more. No promises, but there is so much going on that it makes a lot of sense.