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.
Thursday, July 26, 2012
Tuesday, July 24, 2012
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.
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.
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.
Saturday, July 21, 2012
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.
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.
Wednesday, July 18, 2012
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.
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.
Tuesday, July 17, 2012
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.
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.
Monday, July 16, 2012
: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.
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!
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!
Friday, July 13, 2012
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.
It is hard to grasp the idea that we won't be seeing her again in this world.
Thursday, July 12, 2012
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.
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.
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.
Tuesday, July 10, 2012
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.
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.
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