: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.