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!