A Windfall

Here it is, almost the end of the month, and to my utter astonishment, I have $200 EXTRA.

What to do with it??? Such a quandary! There is so very much I'm in REAL need of: clothes, shots for the cats, a chair and lamp, so I can have a place to read (other than sitting in my wheelchair or hospital bed), linens, a winter poncho, and on and on and on. All, everyday things that many would not consider luxuries. Things that many can't imagine not having available...

After days of cogitating, I fell back on my Mother's and Gramp's sage advice. I remember hearing it many times over during my childhood, ”You can never go wrong with the necessities - it's like putting money in the bank."

So I stashed a good part of my 'windfall' away for 'Medical Transportation' (@ $10 round trip). Then I got online to http://www.vons.com/.

I now have a kitchen full of food (also a luxury around here!). The freezer is full of microwave meals, the cupboard is full of canned fruits & veggies. I have tuna, and crackers, and chicken broth, and cottage cheese, and sour cream!!! Most of which my kitchen hasn't seen in months.

Here's to Windfalls!!!

Byetta User!

Took my first injection of Byetta today - no problems! So I am 'officially' a Byetta user!

It's been a hard fight (insurance), and 8 weeks to get to this point, but I'm finally here!

Now all that remains is to see if it's going to work for me. Sure hope so as my last a1c was UP to 8.4, the highest yet.

I have a follow up appointment with the Diabetes Educator next week.

Byetta, YES!!!

I actually GOT my Byetta today!!! (What, insurance has only been dragging their feet for SIX weeks???) It is in my refrigerator! (I still need to read all the 'inserts'.)

And I have an appointment on Thursday afternoon to get my lesson on 'pen use' and to take my first injection in my docs office!!!

I'm so excited! Am just sitting here trying to imagine how I'm going to feel, physically & mentally, if I can obtain NORMAL blood sugars. (I ran '80' all my life till DM hit with a hammer!) I would think it could even be life changing...

Just not having to 'roll' a bottle of insulin to make sure it's mixed for 3 minutes, draw up insulin, inject it with EACH MEAL then either 'getting very sleepy' and taking a nap, or having to watch for a low because I didn't count my carbs correctly!

And the hunger!!! I am ALWAYS hungry (except when blood sugars are under 120). If Byetta (or 'normal' blood sugars could eliminate the INSANE hunger...

Yes, life might be very different with Byetta!!!

Tetany

In the past six weeks or so, I’ve endured still another bout of Tetany, not one of my favorite states of being!

I’ve suffered with Tetany, and the management of it, for all my adult life. The first time after a total Thyroidectomy. Then, it got much worse after they took out my last parathyroid glad, (ten years later). Because it looked suspiciously like cancer, they were unable to ‘implant’ some of it in my arm, as is routine, so you don't have to live your life in this condition.

Tetany symptoms includes: spasms of the hands and feet, muscle pain, a ‘fuzzy’ feeling in my mouth, cognitive problems (slow thinking, unable to make decisions), and when it’s bad, Laryngospasms (spasm of the larynx, the voice box -- it feels like someone is pressing both their thumbs into the front of your neck. Eventually, you start making weird noises when you inhale.)

It’s not like I’m unfamiliar with either the problem or the treatment of Tetany. But it DID kinda take me by surprise because for the past few years, I’ve actually been suffering from HIGH blood calcium (Hypercalcemia), probably caused, this time (the first time it was that darned parathyroid gland!), by some left behind after that surgery, parathyroid tissue that slowly regrew.

The problem with this ‘regrown’ parathyroid tissue (and the docs actually haven’t been able to FIND it), is that it’s not reliable. It tends to work is ‘spurts’. I’d almost rather have NO parathyroid; it probably would be easier to manage.

The problems THIS TIME were:

1) I did not have the necessary medications in the house, well I had some of them, but they were outdated by 5 years, so I had no idea of their potency. (I won't make THAT mistake again.)

2) The NEXT problem was that I went to the Emergency Room to get prescriptions for the needed DHT, Calcium, and Magnesium. (I hadn’t been to an ER in years!) I told the nurse and the physician why I was there and that I was suffering from Tetany.

The doctor DID NOT order an ionized blood calcium!!! This would be the FIRST diagnostic test to diagnose Tetany. He did a standard blood calcium, which was actually a little high – from all the calcium I had been taking in previous days, no doubt. When you have Tetany, you can have a normal or HIGH blood calcium, and a LOW ionized blood calcium.

Now, no one at the ER informed me of the test results or I would have requested the needed test. I didn’t even see the doc again, it might have been different if the doctor had seen me and given me the test results, talked to me! But, a nurse came in with the prescriptions for calcium and magnesium. I did not SEE the lab results until I was being discharged and actually could think clearly enough to ask for a copy.

However, I felt so bad, and was worried about getting home I actually got lost on the FAMILIAR public bus system and didn't get home till 10P. Because of my cognitive state, I actually sat at the wrong bus stop for an hour. I didn’t actually review the labs until the next day.

Silly me! I thought someone in the ER at Scripps/Mercy Hospital would be competent enough to look Tetany up in reference books, on the computer, or call my doc, (which I requested multiple times, at multiple levels)! The fact that I assumed the staff's competence clearly shows my diminished cognitive state. Obviously, the doc saw that normal blood calcium, and wrote me off as a hypochondriac. I was left to get home while suffering moderate, undiagnosed, Tetany...

3) Three days later, (after about 6 days of medications) I saw my Endocrinologist. She’s a terrific Endocrinologist; I’ve been seeing her about 5 years, mainly for Diabetes2 and lately, Hypercalcemia. I see her in a ‘clinic’ setting and put up with ‘residents’ in order to see her, as I feel she’s that good.

However, she had never actually seen me having Tetany before (though at times, over the years, I’d pointed out hand spasms – and there had been some VERY LOW ionized calciums). And, I guess, she didn’t have access to my old records. AND, by the time of this appointment, I was having NO SYMPTOMS (plus, it can come and go rather quickly – and be in all stages). So, there I was, feeling the usual ‘post’ Tetany, ‘been run over by a truck’ state, but NOT Tetany.

She told me that the labs at the ER had been more or less normal. And she ordered a whole bunch of other labs (what a waste of money, when done while not exhibiting symptoms). She inferred that I was not having Tetany (well of course, not at that exact time!), and that she was seeking ‘the cause’ of my ‘cramps’ (I wasn’t having cramps! I was having Tetany!).

Sure enough, a few days later she called with the lab results: mostly normal. And she too, treated me like I was a nut! Gave me directions for the ‘Tetany’ meds; extremely small doses.

I followed her directions, and sure enough, in just a few days, was having moderate Tetany AGAIN. So “I” increased the meds, and I started feeling better in a few days. Still, it remains ‘iffy’, it comes & goes (but doesn't stay away), kinda like that aberrant parathyroid tissue, wherever it is.

I don't really 'blame' her; like most Endocrinoligists, she tends to focus on Diabetes, and Thyroid problems (MUCH more common). But I thought she knew me better than that by now...

I do get tired and frustrated when I'm so very ill, AND having to be my own doc & advocate because my 'real docs' don't believe me and/or won't think outside the box, or spend the time to TALK to me, or review the extensive records I've provided.

Believe me, I KNOW Tetany. I spent post-surgical months living with tubes in both arms. Have been treated (before DHT) in ER’s in two states for it with regularity (surprised the hell out of many ER's!) Have lived with it, tried to manage it, for the past 25 years!

Why, oh why, isn't there a Medical Specialty that focuses only on 'Rare and Unusual' conditions??? Boy, I'd fit right into such a medical practice!

For some excellent info on Tetany...

Jolene

I clicked into a new search site, http://www.zabasearch.com/ and for no thought out reason, entered the Jolene’s full name.

Jolene is a childhood friend (best friends since kindergarten, for heaven’s sake, when we lived just houses from each other!) that I'd lost touch with in the last few years.

They had retired, moved to another state, and I'd also moved. The result was that we lost track of each other, for the first time since the day we met.

I’ve looked for her. Oh, how I’ve looked for her, phonebooks, people with the same last name (I’ve sent many strangers emails asking if they were Jolene!), Social Security public records, and on the internet in the hopes she’d eventually put up a web site. I’ve even tried to contact her husband’s relatives as he comes from a large family. I’ve waited expectantly for that annual Christmas Card (not realizing a ‘change of address’ order expires after only six months).

Then to my joy and disbelief, boom, there it was, on the ZabaSearch page! From the information provided there, I was able to find her phone number in the white pages.

I just hung up the phone from talking with her!!! I recognized her voice immediately when she answered. Some things, even 55 years, don’t change. We didn’t talk long, just long enough to exchange current information; health, kids, grandkids, and email addresses!

Thankfully, she has a computer too – Jolene and I can really catch up now, maybe get to know each other better again! This just makes my day, week, month!!! I am sooo happy...

Byetta

It has now been one month since the rx for Byetta was called in to the pharmacy.

MediCal has REFUSED authorization for Byetta. And they said that they will refuse it the second time it's submited, today.

1)MediCal does NOT have Byetta in it's Database, and it could be weeks before it does. Amylin/Lilly IS working with them on this.

2)MediCal says it will not approve Byetta UNLESS I am currently taking BOTH Metaforman & SufaWHATEVER (sp) and it isn't working well. (Now if I started taking these two meds today instead of insulin, even though I've tried them before and they didn't work, they'd probably deny Byetta till I'd been ON these meds for 6 mos. or longer and had a history of a1c's to back it up!)

MediCal says I NEED the first drug Amylin came out with, the one for Insulin Dependant Diabetics. (They obviously thinks they are docs - endos yet!) They would approve that (go figure!). That is all they would approve since I am taking insulin. (No way around this as they have been paying for my insulin for years.)

So, I need one of the Byetta Sample kits, they are a complete 5 mcg pen, a few needles, a video on how to use (a lotta good that does folks w/no VCR), and a $10 coupon for next purchase. Private endos are giving them out to patients left and right, I know several folks that have already gotten these. I need to try to get one from my doc.

AND, I've requested the paperwork for the program Lilly has to help pay for meds not covered by insurance. Though I may not be eligible, or they may not cover it for the same reasons MediCal won't. I will certainly try though...

AND, I will file an appeal with the state when I get the hardcopy 'denials' from my pharmacy. But those appeals can take months.

AND in 1/2006 when MediCare takes over as Primary for all meds, I might be able to get it then. (This could be why MediCal is dragging their heels on a lot of stuff.)

Perhaps I should just stop taking insulin, stop purchasing food, and put the bucks towards Byetta ($119.00 plus per month). Would lose a lot of weight THAT way, as well as attracting media attention (my blog is already listed with the Union Tribune); maybe sell a lot of eBooks because of it, and be able to afford to PAY for the Byetta... Plus, my attorney will be back in town late this month!

More on my Neighbors

When I went out to get my mail (or should I say trash, as most of it goes right into the dumpster) today. I was surprised to see a vacant apartment in the next building.

Now vacancies in this huge complex ( 35 buildings - 500 apartments ) are hardly a unique item.

But the folks that had been living in this particular apartment had been there for longer than I've lived here, almost six years. Seeing their place 'empty' was shocking.

Now we weren't friends, just nodding neighbors, speaking to each other at appropriate times. I didn't even know the names of their four children, though I often watched them play; I probably spoke more to the children (well behaved, nice kids) then I did to the parents. So it's no wonder that I wasn't 'notified' of their impending move. Nor did I see a moving truck.

Now they're gone. I don't know why, or where they moved too. I will miss them, and their constant presence around the perimeters of my life. Another loss of sorts.