At least something is right!

Calcium                       8.2 mg/dL           8.6-10.2       *(.........)
Phosphorus                    4.4 mg/dL           2.7-4.5         (........*)
Endocrinology
----------------------
TSH                         37.93 mIU/L          0.35-4.94        (.........)*
Free T4                      6.67 pmol/L            9-19         *(.........)

My phosphorus is normal! I doubt it will be normal again next blood draw, but crazier things have happened.

It also seems that we will get my TSH over 50 by the time I am hospitalized, which is a relief. I was worried that all this would be for nothing since my TSH would still be too low and the whole treatment would have to be put off again and I would have to go hypothyroid and onto the low iodine diet again.

All in all, I am rambling. Outside of the calcium (which I didn't need a blood draw to know was low) it is a good news lab day I guess.

Waaah I am sick

I wonder if that explains my calcium drop.

I had been warned that stress, illness and exercise could effect calcium levels.

Stress I have had plenty of and now I am sick.

My throat hurts and my nose just started running. I think I have fever, but am too achy and tired to go check. My eyes hurt and I went to sleep at 9pm last night and only woke up once to get more calcium between 9pm and 7:50am.

I just better be better by the time I am admitted August 9th.

On that track, my paperwork for my whole body scan was lost. They never made my appointment for the 19th of August. I am glad I checked back in to find out what happened. The oncology nurse is working on getting me a new paper and hopefully there will be an appointment available still.

For the record, low iodine diets and low phosphorus diets don't mix. Canned peaches and water melon are my friends. I am tired of egg whites. :)

Wow am I whiny today.

Liba

Low

Calcium 8.2 mg/dL normal 8.6-10.2 *(.........)

I've been lower, but the drop from high to low in three days probably explains why the symptoms are so extreme this time.

I had heard that stress could lower calcium levels. I think it is time for a vacation.

Not so good.

My labs Sunday showed my calcium a bit high so my alpha d3 was lowered and now I am having major signs of hypocalcemia and am miserable. I am twitchy, numb and have pins and needles from head to toe. My feet and calves are cramping and painful. I woke up in the middle of the night, several times, with foot cramps that only got better by getting up and standing.

It could just be the drop and my body needing to adjust or my levels could be very low. Either way, I am not feeling good.

Lab results should be in by 2pm. It is 11am now.

For now I wait.

I am doing okay actually

Right now I am just busy with sick kids, letters to write, and lots of praying.

I have been off of my thyroid medication almost a week and a half and start my low iodine diet on Sunday. I will be in isolation for a week starting two weeks from Sunday. My mother in law is arriving the Tuesday before to help my brother in law get ready for his wedding. She is hoping to stop by and visit, but it isn't a trip she can give us much help or support during. My poor husband. He could use the help.

She is bringing me shoes, Avraham Chaim CoQ10 (a dietary supplement his neurologist prescribed, which we can get here in pills but in the US we can get in liquid), and a winter coat for Zlata Tova (which she obviously doesn't need yet, but my SIL outgrew it and we will need it soon enough). I hope someone manages to bring me one of the many pocket calendars that comes in fund raising mailings for next year. My calendar is only good through September and I have been booking appoitnemtns and just making notes in the back of my current calander. Little things can make such a difference.

I feel like a little kid, getting excited about my MIL's suitcases, but really, she is excited about bringing them and it wouldn't be as much fun for her if we weren't excited. As long as we are at
least as happy about seeing her as the stuff I figure we are doing okay.

Need a new cleaning lady. She used to work for two hours Friday, cleaning bathrooms, washing floors, etc. Then one week she was done with the work in an hour and fourty minues and I didn't have more to give her, so I paid her the full amount. The following week it was an hour and twenty minutes and I paid her the full amount but things didn't look so clean. This time she stayed an hour. I asked her if she had washed the floors yet when she was leaving and she said she had. The kitchen floor was bad enough that my husband took up the broom to sweep it, without me asking, right after she left!

I have to call her Sunday and tell her not to come any more. I may be too nice and a pushover, but this is clearly not working. My house wasn't terribly dirty before she came and it certainly isn't any cleaner now that she left.

Brain fog has hit.

I have the attention span of an over tired two year old. I keep on starting something, getting distracted and forgetting what I was doing.

My calcium is 8.8 which is just fine. My phosphorus is 5.4 which is high. My CBC is totally normal (as I told my doctor it would be, but she said I was pale and wanted to run it, so she did). I wonder how high my TSH is. It was drawn this morning along with the others but can't be run stat, so it won't be back for a couple days.

My children are such a pleasure to be around. I am really enjoying having the time together with them during their vacation. Tziporah Faiga organized her clothing shelf while Esther Rivka and I folded and put away the laundry today. Zlata Tova is still running fever though (day three today) and I am starting to worry. She is eating and drinking okay, but her fever is high and she looks so pathetic. I hope she turns the corner and we don't have to go to the doctor tomorrow. I am going to make an appointment just in case.

I had to fill the Renegel again today, still without insurance coverage. We are waiting...

Whirlwind

It has been a crazy couple days filled with lots of appointments.

Among them, yesterday, was my nephrologist appointment. He is convinced he can get my Renagel covered. He had the other nephrologist who works with him have the secretary type up a letter and faxed it to all the relevant people. I hope it works! I need to fill the prescription now so I hope it happens soon. He is pleased that it is helping stabilize my calcium levels, even though my phosphorus remains high. I feel a lot better even if the lab results aren't great.

The brain fog isn't terrible yet and my exhaustion is likely legitimate. I had four appoinements and a farwell party for a good friend yesterday and today was no less busy.

Tomorrow I only have one appointment, but PDZ has to go to Yerushalayim to deal with government offices so I will have three bored children home all day on my own and there is plenty that needs to be done. Zlata Tova was running a fever today. I hope she is feeling better tomorrow, but expect her not to be her happiest yet even if she is fever free.

Enough rambling, it is time to go to sleep!

Day two off Eltroxin

and I still feel pretty normal.

They say the half life of the Eltroxin, my thyroid med, is a week. I hope that means I have at least a week before I feel the effects of being medication free. We have lots of appointments to deal with this week and I am hoping to get some food cooked and ready in my freezer.

Next Sunday I start my low iodine diet, on top of my low phosphorus diet. It will be a challenge. At the least, I hope to bake some safe bread to put in the freezer but hopefully I will manage to make and freeze some meals as well.

Avraham Chaim is B"H doing a lot better. He is still coughing some and sleeping a lot but his fever is gone and he is mostly back to his happy self. I am very very relieved. I am still in the habit of worrying about him, but it has been six months since his last pneumonia and hospitalization. B"H he is doing better and better as he gets older.

Amazing!

We checked my TSH when we drew labs yesterday and it got the results today.

:)

Normal is 0.35-3. The evntual goal is for mine to be .1-.2 to keep my thyroid suppressed.

My result was 0.35! We are so so close to ideal dosages and I am not even three months post op! Most people take at least a year to get where we are now.

B"H.

Last day on thyroid medication

I am a bit worried about the weeks to come. I have a ton to do and the children are home and I felt awful after my surgery when we were trying to find the right dosage of thyroid medication, being without altogether is a scary prospect.

I need to start filling the freezer with low iodine food while I still have the ability to concentrate long enough to cook anything and the energy to want to. Next week is full of appointments for the children though. It doesn't look like a good cooking week at all.

Today is nice and cool, a great baking day, but I am exhausted and want a nap. My mother left last night for a middle of the night flight and we went swimming with her yesterday morning as well. It was a nice day, but a long day and today my body is aching for some rest.

I feel like a little kid

I had to turn in a weeks worth of food diary to the dietitian today. The first several days I was great and wrote everything down as I ate it. Then I got sloppy and today I had to figure it all out. I hope it was close enough. I feel like a naughty school child making up my food intake with little hope of actually getting it right.

My mother and I went out and had an adventure in Bnei Brak. We were looking for a Chinese food restaurant but it is no longer. We did a lot of walking, bought AC a dump truck, ER a book and some dabber markers and ate falafel and sorbet.

It was a nice trip, even though it wasn't the one we planned!

:)

Nothing much to report.

My labs were pretty good today. Phosphorus down to 5.0 from 5.9 the end of last week, not normal but better. My calcium is 9.0, which is just fine.

I am too tired to go, but my mother promised the kids a trip to the zoo and so I have little choice. It was 95 degrees out at noon, ouch, so we aren't going until later in the day.

Avraham Chaim is sick, fever cough, etc. I am pretty sure it isn't pneumonia at this point though. He has been totally lethargic since Friday but he said he wants to go to the zoo (one of the few things he has expressed an opinion on in days) so grandma says we need to take him. Cooling vest, hat, shade and lots of time inside predicted. Maybe it will be a lot cooler by the time we get there, because we certainly won't be there before 5pm.

I need new sneakers. Putting my old ones on reminds me every time. They are better than my dressier shoes for walking, but falling apart none the less.

Today we are supposed to be looking at gowns for the girls for the wedding, not sure when that is happening. I should at least call and check in with the lady though.

Oh well.

Solgar says that there is a very very small amount of phosphorus in their magnesium, but not to take it anyway. I stopped but my phosphorus is up up again.

:(

Okay now, that is a mess.

I am trying to decide if I should laugh or cry.

My dear sweet husband reads everything, including the inactive ingredients on my pills...

My magnesium citrate is almost empty and he got around to reading it today.

One of the inactive ingredients is calcium phosphate.

Think that is what messed up my low phosphorus diet?

I was supposed to take it twice a day and usually did. On occasion I only took one because it made my stomach unhappy but recently I took a break because it was giving me lots of intestinal issues. I wonder if that is why my labs Sunday were so much better.

I guess I either need a new type of magnesium or just to quit.

I wonder if there is any way of finding out how much phosphorus is in each pill.

I am calling Solgar now to see but seem to be in an endless wait. They are in NJ so they may well be closed, but they say that my call is important and they will be with me momentarily.

Vitamin d very low. Shoes bought for 4/6

All the girls in the house, myself included, have new dress shoes! That was a long shopping trip, but thanks to my mother's extra patience today it went well. It is almost a miracle that Tziporah Faiga got shoes. The gowns will require an outright miracle and we are praying for it.

I have new vitamin d drops (vitamin d level 11, normal over 30). Maybe they will be the magic energy drops I have been awaiting.

The house was clean yesterday and will, God willing, be clean again tomorrow. Tonight I am too wiped to do anything, though not tired enough not to notice.

We are hoping to bring the kids to a pool tomorrow. I have parents night at Avraham Chaim's school tomorrow as well. We are supposed to be looking for gowns. I wonder which of these things will happen and which won't.

Today was my birthday and it wasn't a bad one. I didn't remember it was my birthday until my father in law called to sing to me at 2pm, but at least we remembered before it was over!

Good day.

My labs were all normal. My phosphorus was the lowest I have seen it since my surgery. I got my prescriptions refilled. My blood pressure was normal.

We went to my brother in law's engagement party. It was very nice.

My mother got me cream to reduce my scar's viability. It seems pretty innocuous even if a bit artificial floral stinky.

Tomorrow I see the dietitian and we are hoping to buy the children dress shoes for the wedding. We have to find them gowns as well... that will be a challenge. I hope I am up for it!

Tingly, tired and fed up with people not getting it.

We increased my meds again after my last blood test results, but for what ever reason I am more tingly and having more symptoms of hypocalcemia. It is almost as if the symptoms were delayed. Hopefully my labs will look good Sunday and I will be feeling better by then as well. It looks to be a busy day.

Sunday afternoon is my brother in law's engagement party. I have to figure out if we are going or not. My husband couldn't get off of work. He tried. We weren't told about the party until after the week's schedule was made though and he couldn't find anyone to switch with. If he had known Tuesday morning it would have been possible, but Wednesday for Sunday just isn't sufficient. It isn't worth getting fired for insisting on the time off or just not showing up at work.

It stinks. I am not sure if I am up to going with all the kids on my own. It is an hour and a half from home and will be a very expensive trip for someone I don't feel close with, just because he happens to be related.

We shall see!!

From what I heard, at this point his wedding is scheduled for the last day I am in isolation or the day after I get out of isolation for my radioactive iodine. We don't seem to rate being taken into account while making plans. I am not sure I will be making it to the wedding and I am honestly not sure how much of a dishrag I want to make myself trying. Getting all the girls the requested blue gowns between now and then considering the fact that my mother is here now and in two weeks I will be off of thryoid medication until well after the wedding it is going to be a challenge and getting everyone ready to go and there may well take super powers.

I understand that people don't have a clue what I am going through, but honestly it is still frustrating. All of the months Avraham Chaim was hospitalized and through out me not being well we never heard from him. He hasn't asked. He hasn't called. He hasn't offered any help. We are just an after thought. We don't rate visits, attendance at our joyous occasions or phone calls.

I know the phone line goes both ways, and we have called. We invited him when things were well. We tried to build a relationship.

He lives relatively locally, comes to within easy walking distance of my house to visit friends and doesn't even say hello. We see him maybe twice a year, and before I was ill we invited him all the time.

Sometimes family can be extremely frustrating. I feel like the right thing to do it to push all limits and attend and be there for him. I am not sure any more.

23 hours and 10 minutes delayed

I wonder if the chickens my mother brought for when I am on low iodine again are still frozen. I am praying hard that they didn't defrost and leak all over everything.

My mother ended up with a stopover in Paris from the looks of the airline website. She is going to be a miserable mess when she gets here. Nothing besides the flight better have gone wrong.

Her bed is made and the kids should be in school (the house quiet) when she gets here. I hope she manages to rest before they get home.

Poor Mum.

On a cute note, we managed to get Avraham Chaim to say grandma. It comes out "feema" but it is cute enough to melt any grandmother's heart and my mothers is easy to melt so she will be thrilled.

What a day

My mother was scheduled to arrive at 7:45am this morning. I made myself nutty running around, trying to get everything done, before she got here. In the end her plane was delayed by 21 hours and the house is not what it was this morning and won't be by tomorrow morning.

I had meetings all evening and my mother was supposed to have been the babysitter. Some babysitters you know the house will look at least as good when you get back. Some you know it won't. I couldn't find any of the former available by the time I realized I needed one. Oh well!!

I am B"H feeling pretty good. I am tired but I have some energy available before I am exhausted. My labs from today weren't terrible. My phosphorus is back up to 5.7 and my calcium down to 8.5 but I am not terrible tingly even with both numbers off. My anemia seems to have resolved though!

All in all, we plan and God laughs. I was ready today but my mother coming into a pristine house obviously wasn't what was supposed to have been.

Too funny!