Parathyroid Doc - Round 4

I am absolutely blown away.

The last (scantilab) PTH came back NORMAL!

Doc says he's not so concerned about Hyperparathroidism now. (I am!). That he want's to redo test in a 'month or so'.

I said fine! But I ALSO want to move on with whatever is next. Since Sept. 2006, he's done 3 PTH tests: 2 were high, one normal. He has labs from Mercy Clinic for past two years with multiple high PTH results (and some high ionized calciums, and some LOW vit D3's). I have Hyperparathyroid symptoms...

Does redoing the PTH at scantilabs AND moving on not make sense?

Not to doc, he reiterated: 'we'll redo test in a month'. Maybe another 30 days of illness for me (even though I am currently feeling better), another 30 days of waiting, another 30 days out of my remaining time.

I hate docs; why is 'their' decision the absolute, final one? Why is there no 'middle' ground with most of them, no negotiation? Do they teach 'stubborn' in Medical School?

The almost escape!

It was just past midnight and I was sitting in the Living Room watching one of my favorite PBS programs: Rosemary and Thyme. For some wonderful reason, it's been on every week night at 11:30PM, so I've had the chance to catch up on the episodes I've missed.

But about half way through the program, I heard LOUD thuds and bumps coming from the bedroom. I called the girls and they didn't come. So I quickly went to investigate.

In spite of the screen being 'nailed' on, and the window only being open about 2 inches, Lucy had managed to push out the top of the screen. Then get herself caught between the window and the lower aspect of the screen, which was holding strong.

I gently extracted her, something she did not take kindly too. Then I looked around for Ethel to make sure she hadn't made it outside. They were none the worse for it.

But it pointed up the fact that they are now almost 3 years old, HEALTHY (at last), have had all their shots, have been trained to come at the sound of the 'snack' can shaking, and want to get OUT. And there is no reason now for me to not introduce them to the big world out there. After all, they ARE cats!

It's bad enough that I'm almost 'housebound', I have never seen any reason for The Sisters to be locked in this small apartment with me forever. In fact, as I go around the complex and see cats on patio rails, or lying in the sun, I have wished that for my two Sisters.

I must admit though, I am anxious and overprotective, they were so sick for so long. And they have never, ever been outside. And I have no $$$ for vets should there be an accident or incident of some kind.

But, tomorrow I will order Advantage ($56. 'gulp' - but enough for a year), and hopefully, we can start going out, first on the patio, next week!

Nancy Pelosi - Off to a great start?

I just posted this response to Nancy Pelosi first 'actions' as Speaker of the House in banning smoking near the House Floor at: The Lede Blog (NY Times). I don't know if it will be posted, edited, or deleted. And since there was no place to leave the url of THIS blog, I am also posting it here, word for word as entered.

I'm a smoker, have no intentions of quitting, I am 60, and I live in
California.

I do NOT believe the GOVERNMENT backed HYSTERIA regarding second hand smoke. (Maybe they should take care of our 'air' and 'groundwater'?)

Otherwise, ALL in my generation would be DEAD, as would our children, which is just common sense, if second-hand smoke is such a 'killer'.

(Has anyone ever heard of 'air filters'? So set up smoking areas, that the non-smoking don't have to enter, that contain good air filters! How's that for common sense AND accomodation? What IS the big deal?)

So, it's OK for my grandchildren to die at a college frat party from overdosing on booze. And for them to be sent to Iraq and die or be maimed for life. But if they light up a cigarrette, even in an outdoor beach or ball stadium, a lynch mob will form! Believe me, it's about come to that in California.

Nancy Pelosi is just REFLECTING California's current, socially approved, give them something to blame, give them SOMEONE (a group they can discriminate against) fad.

I would like to add, that I truely believe this. You can't blame the rich, poor, fat, minorities, women, gays & lesbians, big industry, the media, anymore for anything. There HAS to be someone to blame - smokers are it!

Hoagies and Christmas Cookies

Today I not only got dressed, I went to Vons to use my ‘gift card’ (the only X-mas gift I got this year!). It's only the second time I've been out of the complex since 12.21.06! (Both times since 1.3.06)

I didn’t have the energy to ‘fool around’, no window shopping at other stores. No getting a Starbucks coffee; no chatting with folks. I got the bus, went to the one store, got what I needed, and took the bus home.

Besides Milk, and a couple of other staples (you can’t carry much on a wheel chair), I finally got my Christmas cookies! (Having completely missed out on all the winter holidays this year, I was feeling more than a little deprived!) I was thrilled to find a display of stale, on sale, bakery Christmas cookies! Oh joy!

I also got a deli Hoagie sandwich! In the past few weeks, I’ve mainly eaten Slim Fast shakes, sandwiches, scrambled eggs & toast, cereal, frozen entrees, adding cottage cheese, canned fruit or veggies, and pudding and gelatin cups. So that stack of pre-made deli Hoagies looked like heaven to me.

I was exhausted when I got home. Had to lie down and rest awhile, but not for long, not hours. But trip didn't seem to make pain in my leg worse...

Then I had that entire Hoagie for dinner. No cutting it and saving half for another meal. No adding a cup of fruit or diet Jello, or counted out chips. Just the sandwich, the whole thing, which I was delighted to find, had a few slices of Jalapeno on it! Nothing else, just a cold cola, and that entire sandwich! Every bite was wonderful. Then hours later, before I went to bed, I had a glass of milk and a whole handful (maybe 6?), Christmas Cookies. Not a very good Diabetic meal plan. But then again - maybe I’ll live to plan diabetic meals another day...

Parathyroid Hormones 101

This morning I awoke in ‘the position’; hands in tight fists, arms curled in to chest, head drawn back. This hasn’t happened in a long time, months probably. Though it took a while to ‘loosen’ muscles and uncurl, at this point in time, it’s a good occurrence. (not always the case!).

This ‘Tetany’ sign signifies that my ionized calcium is going down. And is probably why I’ve been, ohhh so gradually, feeling a little better day by day.

Now ionized calcium measurements are funny things. Since my first Parathyroid surgery at age 27 in 1972, I’ve learned, often the hard way, that my ionized calcium level can actually be quite high or low, irrespective of the usually measured Serum Calcium level.

I don’t know why, but docs and ER’s tend to only do a Serum Calcium, which in reality tells them little. Because if it is high or low, they have to investigate further; and being ‘normal’ doesn’t mean that cellular calcium (ionized) is! (nor the Vitamin D levels).

Usually, I keep track of these labs, but in the past few months, I have not. I have just been too ill to care. I do not know if with any of the 3 recent PTH tests done, if ionized calcium or Vitamin D tests were included.

This ParaThyroid Hormone function in my body is a complete mystery. Not only the question of WHERE it’s coming from, since I have surgeons, Sestamibi scan, etc, saying I no longer have ANY Parathyroid Glands. But also the fact that it seems to ‘sputter’. At times it makes way too much and I suffer from Hyperparathyroidism. Then, suddenly, without warning, it will STOP, or reduce output drastically, and I’ll suffer Hypoparathyroidism, which can be a REAL emergency.

Since it’s the PTH that controls the Calcium levels (ionized included), in the body, and I awoke with these Tetany like symptoms this morning (no ‘other’ or continued symptoms of Tetany today), I’m assuming that my ionized calcium, therefore my PTH levels are going down.

In fact, I KNOW that to be the case, as I’m gradually feeling better. I can only hope that it doesn’t go TOO low. Though given my ‘druthers’, I’d rather be low. I think it’s easier to ‘deal’ with.

Boy, would I like to get off THIS roller coaster!

Feeling better...

I was able to get dressed today (but no shower or anything else). And take the bus the 10-12 blocks to the strip mall. And the wonderful ATM.

The energy expended just to get to the bus stop was such that by the time I got there, I was suffering a mild headache, and moderate nausea. I considered going home. But it was sunny, and not too cold, and I'd made it TO the bus stop, so... It wasn't long however before I was regretting my decision.

The wheelchair lift on the bus would NOT work to let me OFF. The bus emptied out, the driver called in for advice, and still the lift wouldn't work. I thought, for awhile, that I was gonna be stuck on that bus forever (wasn't there an old folk song like that?). Finally, after repositioning the bus in relation to the curb several times, turning bus off and on several times (to reset equipment, etc), I was finally able to, gratefully, descend to the sidewalk.

On to the ATM, where I got a little cash to keep on hand (for disabled transit and or to send someone for milk).

Then to Long's where I spent too much money. (You should never shop while really ill - you're judgement is NOT good.) But since I'd literally had NO Christmas nor New Years, I got myself some stuff: 4 pr of socks (my feet have been freezing in this cold), a box of chocolate covered cherries, Sensodyne for my aching teeth (need to get to a dentist - but have been too ill), batteries for my Deltec Cozmoniter (I go though about one a week!), batteries for my portable radio (have been dead for 3 months), a package of bran muffins (WITH raisins!), and a package of swiss cheese to go with some ham I have. Imagine my shock at the check stand; $40!!!

Went right home and went to bed...

While I was lying in bed, exhausted, and watching Law & Order Reruns, it occurred to me that I'd been in a 'stupor' for the past 3 weeks, and for whatever reason, was now getting better. Why I'm getting better, I don't know; perhaps the extra vitamin pills, or the sunlight, or trying to eat more. I can only hope the trend continues.

Scrambled some eggs to go with a bran muffin for dinner, leaving the dishes on the stove and counter. Fed the cats. Now here I am, trying to stay out of bed; but I'm so tired, and had about an hour of pretty bad muscle pain in upper legs and arms, I know I'll be there soon.

I'm just so thankful that I was able to 'take care of business' even if I spent way too much money. And that I finally got off that bus! And that darn lab work will HAVE to be in soon. And that I can go back to bed with the TV now...

New Year's Day 2007

Not a particularly good day, physically, but not as bad as some have been in last few weeks.

But to show how ill I've been, I didn't even think to get a donut and watch the Rose Parade this morning. Perhaps the first time in all my adult years.

I am so tired, and so weak, I can hardly do anything. My balance and gait is off, so I nearly fall several times a day (I hate staying in wheel chair all the time, but if I don't, my left leg and ankle get much worse) Have off and on nausea, headache. The muscles in upper arms hurt so bad, actually feels like they've 'ruptured'. I get horrible cramps in my hands and feet, and hips, especially at night. I feel feint, lightheaded, most of the time. Every once in awhile, for a few hours, I have what I've learned to call over the years, 'mini-blackouts' ie for a split second I'm gone; (I think this has something to do with all the near falls.) I haven't had these in years. Not to mention, my thinking is often 'fuzzy', and slow, definitely not my usual decisive self.

I've not even been out of the apartment complex since 12.21.06 when I went to UCSD Pearlman Clinic to have blood drawn! Two or three times a week, I make it to the trash bin and/or the the mailbox.

I've been so sick, I've not even been able to get to the ATM to make a deposit. So I had to get a Direct Deposit Advance to order groceries online for delivery ($200 - and I'll have to pay back $220!). But had no other choice, was out of everything, and couldn't get to the ATM to make a deposit. Still haven't, no real hurry now - the damage is already done.

I've been so sick at times that had I had someone living with me, they would have either taken me to an ER, or called 911!

Now I realize that all this could be from something other than hyperparathyroidism, but since I've BTDT, I think not.

The good news?

-The damn holidays are OVER. I can call, email, see my docs! And I'm gonna start doing that first thing in the morning. I want some answers; I want TREATMENT. No one should have to live (survive) like this for weeks on end.

-I have a new IP. She's efficient and NICE. So at least I have help for 2 hrs. twice a week, for awhile, till she finds something better!

-I do feel just a little better, for whatever reason the last few days. I am mostly out of bed, if miserable. (I've been trying to get out in the sun for 20 min. a day, when it's not overcast. And I've doubled up on my daily, non-mineral containing vitamin.)

-I've lost 5.5 pounds this month. But during the past week have actually been trying to NOT diet, but to eat MORE, in the hopes I'd feel better.

-The results of the last PTH test should be in THIS WEEK, and we can move on from there, depending on the results.

And ohhh, yea, Happy New Year everyone!