Dilemmas and Bucket Loads

       Many of us feel overwhelmed in our daily lives at one point or another. I am no different. I've been facing a small dilemma of whether to blog about  issues I'm facing or keep quiet.  On one hand, if I blog I hope it does not change the mind of someone who is awaiting that precious Gift Of Life- an organ transplant. However. on the other hand it just may strike a chord  in someone facing a similar issue and help them feel they are not alone.

      I've been a little absent not only here but also on my FaceBook fan page, mainly due to the fact that my energy level for quite some time has seemed non-existent.  Of course, I did have to treat the lower left corner of my lip for pre- skin cancer, which in itself was no fun. A person never truly realizes how much actually touches your lips until it burns at the point of contact.. Oh and brushing your  teeth- well that was a major feat of gymnastics!. I'm an avid brusher, so I decided to bite the bullet and deal with the pain until I could get the toothpaste washed off.

  On a good note, I am still off Insulin.. YAY!!! My blood sugars are in range and I've even had a few lows. My HgbA1c  was 5.3 at my last visit so the endocrinologist is ecstatic. Why I stressed over telling him I was off insulin amazes me.

 I have however been having alot of pain. At first this was attributed to muscle and joint pain-but we now suspect that my Thyroid may have something to do with it also. I felt extremely stylish with an ace bandage wrapped around my ankle for 4 days! They found my thyroid to be enlarged and with cysts all over it via a sonogram. After the official reading we'll make a game plan. Adding to that, me the person who greets each day with a devilish grin and "hits the ground running" has lost her "get up and go" . Oh,I still greet each day with a devilish grin, but the energy level seems to be on vacation. This is completely not my style, so I am conducting an extensive search to find which tropical island my energy fairy has gone to. No more Pina coladas on the beach- honey time to come home!

    And this week has brought on a new development.  Remember how good it feels to stretch when you wake up?  Oh..me to...  Since Monday each morning I stretch it triggers my a-fib rapid heart rate.. No fun and it totally ruins that wonderful stretchy feeling.. I'm now taking extra meds for this-lucky me.. Just more to add to those little boxes to remind myself. I promised my cardiologist I'd call him if these "episodes" became more frequent than say.. 1-2 times a month. Think this falls into that category? I've had ablation for one form now I guess my heart is lonely and making itself known..

     I also know that these transplants won't last forever-but- this is not that time- trust me.  ( evil grin)

Insulin -Day One

So yesterday I chose to not take any insulin and work on modifying my eating and exercise habits.

I was pleasantly surprised to find that my blood sugar readings were within range except at bedtime. This is where I'd had some yogurt as a snack so the reading was what it would have been on insulin too.
This morning I wasn't in the 70's to low 80's but at 92.  Lunch was 101..  so I'm attempting day 2 now.

I have developed a slight headache which I'm not sure is related or not. I may start taking the insulin again depending on how my numbers look. I've also ramped up my exercise program and water consumption. Both of which will benefit me in the long run.

Please understand this is not something that you should undertake because it's currently working for me. I have merely gone back to the severe controls that used to work for me before and gave up all the food I started eating and shouldn't have.

Should my blood sugar readings rise...I will be first in line for that shot. For the moment it's nice to have hunger pangs and not insulin entering my blood stream to work.

Insulin

I haven't posted in along while mainly due to a few health issues, but I didn't want to post them here and make anyone worry it might happen to them too. When I don't feel well  I normally go into seclusion so my body can regenerate and recuperate.

Todays posting has been on my mind for quite sometime now and this I need to get out there.

As many of you  know I voluntarily started using Insulin (long-acting) last year because I could read the writing on the wall. My blood sugar levels were rising and knowing that Prograf and Prednisone were the culprits I wanted to correct it before it got bad.
I started with 15 units a day and have finally settled at 8 IU.Well that's what my Doctor has me on. I've been using 6IU for the last 4 months. I am still having morning low readings and sometimes waking in the night with severe lows.
The one thing bothering me at the moment though, is the churning in my stomach all hours of the night. If you're on insulin you know this is when the time release is "releasing" the insulin into your system. Three times last night it woke  me up. As usual I lay there waiting for symptoms of low blood sugar to appear and when they didn't I knew it was  time release at the wrong time. This is happening alot lately and I would really like to get a full nights sleep without waking- waiting-then trying to go back to sleep after being on full alert.

I remember I had a radically self-motivated strict diet prior to insulin. I am considering going back to that diet.  One big issue I have with insulin is it gives me too much freedom. Freedom to eat things things I shouldn't; sweets, potatoes, bread-you know all those carbohydrates that love to raise our blood sugar. It also creates the mind set that I have insulin why exercise? It'll only lower my blood sugar and I'll have to eat to bring it back up. What a vicious cycle this insulin creates.

So we sit back, eat what we shouldn't and are afraid to exercise... Sorry, not why I got these 3 organ transplants. This is NOT honoring my donors and their families.

Lifes little inconsistencies

  I've pondered a few different topics to post, and after this afternoon this seemed the craziest one -so here I go.
My pharmacy had put in for me to receive the Levemir insulin pen since I am currently covered in lovely shades of black & blue. (If they grew together I might have a nice tan eventually). This and two other facts:
1.  I seem to have a terrible cas of "dropsy" when I hold the insulin bottle. My pharmacist is great with "just come on up and I'll have you another bottle ready". He seems to know my panic voice, each time.
2.  I'm running out of places to inject that long needle (to me anyway) syringe. "Count to ten & push" Wait "Let's try fifteen"
Sunday I hit a bit of muscle and bled-plus the pain and itch were no fun either.

Well, he got the approval for the pens so I went to pick them up.It seems though my doctor forgot to order a prescription for the needles. So I had to return today.
Now here's the tricky part... My Part D provider approved the pens BUT not the needles.
Ok so how do they expect me to take insulin? Drink it?
I paid for the needles, not wanting to make another trip and left. I've tried the auto-refill and kept getting email notifications every other day for different prescriptions. Auto refill does not work for someone like me with so many Rx's and dropped off at different times.

 I called my Part D Provider and the nice young lady couldn't understand why either. She kept naming of syringes they covered but no needles. I calmly stated those were syringes not the needles, do you know the difference? She suggested that Medicare Part B covered the needles as they were diabetic supplies. I replied no, their idea of supplies is a glucometer and test strips.
I asked why they would give me insulin pens and no needles? not sure.

Well, after 25 minutes on and off hold it was discovered that they do not cover the "nano" smallest and most comfortable pen needle on the market.

To make a long story short:  When it is not them doing the daily injections-comfort and bruises do not matter.

Doing great!

Well I'm doing great for a recipient. Not complaining. It only gets worse if we do.
The pain in my left side has lessened, leading us to believe it is fractured ribs from coughing.
I have a few new aches though. My right ankle wants to rebel on my walks. Couldn't it do this when I have to clean the house?  I continue to walk, just a little slower until it goes away.
   Insulin is doing great. The Endocrinologist is happy with the results-just not with me doing it and telling him later. It would be easier if doctors offices were easier to get in touch with, no answering machines and waiting 24-48 hours for a response. I miss the days of  old fashioned doctors offices. You know, when I was a person not a patient and my phone calls mattered enough to not send me to a machine. I realize this can't happen with a transplant center, they have way too many sick patients to answer each and every call personally. Even though I must say that everytime I'm prepared to leave a message, Melissa answers the phone and throws me off track. She's such a wonderful coordinator.
   The endo discovered  I have alot of sinus drainage we need to take care of immediately. He asked me if I'd ever taken antibiotics. LMAO......! Me ? No-never.  I told him Dr. Baz prefers Levacquin and he wrote a script for Zithromax. I knew what Melissa would do, so I just called her and she called in the Levacquin. We could save so much paper if we were listened to. But I also know that I'm a "scary" proposition for most physicians. Just not Shands Lung transplant. I'm just another recipient. Thank goodness for that.
    Being alone for a few days me & the boys are gonna have a great time! I've got the dining table set up for "design time" and they get to relax. I'm taking a class on Medieval history so gonna work on that a little, make a few pendants, take more photos and then take a nap.
     Hey, we all need our nap time..

Ain't it nifty???

I've actually hit fifty! The big 5-0, book em Dano.  Oh No  50!
Yep I made it. Not bad for a southern girl predicted to die before she was 20.
I'd always rationalized an early death to ease the burden on my parents. "If I die old, no one remembers but, if I die young -no one forgets". " Just think I'll never get wrinkles!"  Well, now I have to rethink my rationalizations.  I discovered that I'm proud of each and ever wrinkle. Each and every grey hair, well I've earned them all. To be honest I've probably caused and earned a few more than I show.
Turning 50 is usually a bench mark for most people. Many stress about "the over the hill" stigma.
HEY, I kinda like the idea that it's a slow downhill slalom from here... Collective word there---slow...
    I decided to do like the "normal" folks and take better care of myself starting today. Larry walked the boys, left early and I race walked to catch up. We did a good 2.5 miles and a few extra tenths for good measure. I've had the feeling I was eating to please my insulin injections, so I'm trying to take it a lunch time now instead of in the morning. I seem to have a bad habit of dropping around 11:30. I end up eating even though I'm not really hungry. it's been this way for a few weeks, so I'm doing a little experimenting. Please, don't do this yourself because I am. I've been able to control my blood sugar without insulin for almost 8 years, so this is an old habit of mine. The start of insulin has also produced a few pounds on the scale, which is driving me nuts. I'm not sure how to lose it while on insulin. I'm afraid that if I reduce my portion size it will cause another blood sugar drop. And these I hate. If you've ever had one you know why.
The cold sweat on the back of your neck, shaky hands, etc... Not a great feeling. Plus the shock of seeing you blood sugar readings only make it worse as you try to grab food and stuff it in yout mouth. Remembering to not spike your blood sugar because you'll feel worse trying to get it back in range.
 So, this morning instead of taking 15IU at 8:00AM, I'll take it later.
I ate my breakfast: pineapple, orange slices and a raisin bran muffin. I then set out on a brisk 2.5 mile walk, met up with Larry and my boys and continued on. After getting home I watered plants, (gotta keep those grape tomatoes going) then on to grocery shopping.
     I used to take NPH insulin around lunch time because it caused to drastic a drop in the mornings for me, so this is my game plan again.  At lunchtime 12noon my blood sugar was 100. I took 12IU of Levemir and went to lunch. I split a tuna sub with Larry so we'll see how it goes. 
   I also have an appointment with my endocrinologist next week so this is a good week to start my game plan. Probably a bad day as i have no idea what Larry, Debbie, & Larry (her Larry) have planed for tonight.

    More tomorrow on how my theory is working.


Have a great day, I am and will... Stay safe....
IT'S A WONDERFUL LIFE AS LONG AS WE ARE ALIVE AND ABLE TO BE WITH FRIENDWS AND FAMILY.

Medicare &Part D plans---massive chaos

O.K. for today I need to get a little off track with my thoughts and vent, rant, whatever comes to mind about the anger I feel toward our government and how they run Medicare and Part D.
If you are an organ recipient you've felt some of my frustrations. My frustrations have been a monkey on my back for 29 years!
I've regularly sent so many letters to Congressmen, Senators, Governors and Presidents I know for a FACT they see my return address, grimace and recycle the letter unopened.
I had to wait the 6 months to receive Social Security Disability-twice-, waited the 2 years to get Medicare only to find out Medicare would not pay for my first double -lung transplant! Because it had to be performed simultaneously with open heart surgery. Medicare's loophole was the 2 surgeries had to be done separately. Gee my heart goes to our wonderful government politician who orchestrated that piece of legislation.
Now I'm falling into the issue (yet again) of prescription denials. Medicare Part B already covers a portion of Prograf and Cellcept-thankfully. If not, the cost alone would throw me into that BLACK HOLE of a coverage gap. Been there, done that, still trying to claw my way out financially from last year. (another thing to rant about). Now, however I'm having issues with Insulin. Yes insulin. This is my 3rd prescription denial in 2 weeks. I hope someone up there finally gets a clue that the "norm" does not apply to the chronically ill.
As many know long term use of Prednisone as well as Prograf can have the side effect of Diabetes. And after 18 years I feel I need something other than diet and exercise, control freak that I am when it comes to my health. My wonderful Endocrinologist has tried a few new products, and after much talking convinced me that the Pen was better for my use than the original vial and syringes. Me being the person I am , detest the thought of another syringe in my skin. After long term use of Procrit and giving the injections myself, feeling the burn and praying heavily for my kidney transplant, I count to 10 and then some trying to get up the nerve to give myself insulin.

Here's the clincher..... My Part D Provider approved the purchase of the pen needles. I had a few pen samples from my Dr., but they have DENIED the pen. So I'm now out the $30 I spent for the pen needles and constantly fighting the provider for the pen. My argument is:
They are both on the same tier, making them cost the same-so what's the big deal?
According to them you MUST give your self 3+ injections daily.. Yeah right, here comes the loophole. It's a long-acting 24 hour insulin. Who would be crazy enough to give themself more than one shot daily????? Yeah I use fast acting in between, are they going to deny this too?
I've asked these same questions in an appeal and to date have heard NOTHING.

I told family and friends years ago that Medicare and Social Security and NOT something you can depend on. Now you know too.

Time to write another letter to my Congressman announcing a new low for the disabled.
I think I'll fax this one instead..