Sunday, April 28, 2013

The Mathematics of my Disease

Today's blog comes from a little place in myself that often is lonely and slightly depressed.  I like to talk about these feelings, especially on here, because it makes me feel less lonely and much less depressed. 
My sister, who reads my blog, will often remark on how "down" my blog is or how I am always complaining about something in my posts. 
To her, I say, stop reading now. 
I write in my blog to get my feelings out- which are at times so mangled and tangled in my head that it gets hard to settle down and put those feelings into words... which is why I started to blog in the first place. 
There are times when I think that maybe I should try to stay more positive in my thoughts and actions, and then there are those times when I think, "To hell with that.  There's not a single person on this earth that feels exactly like I do." 
So, I blog.
And while my sister doesn't like this type of blogging, maybe now is a good time to remind her that she doesn't live on a day to day basis managing a complicated and - at times - confusing disease.  She doesn't stick her fingers with a needle up to ten times a day and then stick herself with a syringe full of insulin to stay alive.  (nowadays, however, I'm pushing buttons on my pump to manage my diabetes, but for over a thirteen year period I gave myself shot after shot.)
So, since she doesn't live with such a life changing disease, she will never come close to understanding the hardships of living this way. 
Perhaps she should be a bit more compassionate and more Christian like in her attitude (but that is left for an entirely different blog post)

I found myself thinking today that I've checked my blood sugar so many times, that it's hard to keep track. 
So, I got out the trusty calculator and did some rough math. 
I'm going to go with the numbers of checking my blood sugar 4 times  a day for 13 years.  Currently, I check myself 10 times a day and will calculate that number in later.  And there were days that I did it more and there were days I checked less.  Four is an average number. 
Are you ready for that number???  Keep in mind, this is just checking my blood sugar.  This number doesn't reflect the number of insulin injections given.
WOW!  What a big number! 
Now, to add in this past year, after finally getting health insurance.  And this involves checking my blood sugars (an average) of 10 times a day.
Let's add those two numbers and see what we get...
22,320 - is how many times I've checked my blood sugar since my diagnosis. 
Now, to add up the insulin injections.  When I was first diagnosed, I was giving myself insulin about six times a day.  Two with breakfast (fast acting and long lasting), one at lunch (fast acting), and one at dinner (fast acting) and one at snack (fast acting) and one final shot before bed (long lasting)...
Throughout the years, I've managed to keep that schedule on a roughly daily basis.  Again, there were days I took more and days I took less.
So, six times a day is a good average. 
Now to add in the times this past year minus two months of insulin pump therapy.
This past year, before the pump, I was giving myself injections up to 8 times a day.  Some days were less, and some days were more.  But, on an average, it was 8 times a day.
Go ahead and add those two numbers together...
22,480 - is the number of insulin injections I've taken since my diagnosis of type 1 diabetes.

So, when you see my Facebook posts or blogs and I seem a little down, that is the reason I am down. 
It's a painful disease.  And it's not just my fingers that are sore either... My feet and legs hurt so bad from the neuropathy and that is a direct result from having type 1 diabetes with absolutely zero health insurance.  Do you know how expensive it is to manage this disease without health insurance?

So, when I found out I was finally going to be put on Medicaid, I was overcome with emotion and joy.  Now, don't get me wrong... I was a little pissed that it took them so long to finally cover me.  Sure, I'm thankful, but the damage has already been done.  The neuropathy is already there.  I like to think that with proper doctor's care, I could've at least kept the neuropathy at bay.  Now, it's an irreversible and painful condition that I must live with day in and  day out.  And I just found out recently, that my eyes are being affected.  I have mild retinopathy in my left eye.  And while this pump I'm on will certainly help keep my sugars a bit more stable, once retinopathy gets so bad, there's not much they can do. 
I'm thankful that we know early.  This is something that can be treated if caught early on enough.
So, then I got to thinking about the superstars and celebrities out there who also live with this disease. 

There's a wonderful author named Anne Rice that has type 1 diabetes.  And let's not forget the sexy rock star from Poison - Bret Michaels.  Of course, Nick Jonas also has type 1 diabetes.  So, while their disease hasn't stopped them from living their dreams, mine certainly has.

Anne Rice

Bret Michaels (my goodness, he's sexy)

Nick Jonas

I never pictured going on disability at the age of 33 when I was growing up.  I dreamed of being a journalist or writer.  I even had plans on being a world famous cheerleader.  (don't mock... the cheerleading dream was when I was 6 or 7 years old) 
Let's not forget that I spent a good portion of being a type 1 diabetic with NO HEALTH INSURANCE.So, I said my goodbyes to my dreams the day I found out that I had won my disability case.
Sure, I'm working on a novel.  But, there are days when it seems like it'll never happen.  I live with chronic pain and that chronic pain leaves me feeling .... well.... pained. 
But all I can do is keep writing.  Write till I can't write anymore.  And that is what I do some days. 


Anyway,  I guess that's it for now...
Off to continue to write my novel...
Good night dear, few readers...

Tuesday, April 23, 2013

Gut Wrenching Correctness

Well, well, well...
What a day it's been.
I knew it was going to be long day when I had to reheat my single cup of coffee like 10 different times. 
Between checking Olivia's fever, making sure she had warm soup and liquids, giving her medications, and giving her the breathing treatments - my coffee should've just stayed in the pot.  It would've been more useful there.  I don't even think I got to drink the entire cup.
I tried. 
I really did.
Any good mom worth her salt will tell you that a sick child prevails over all... including the needed caffeine in our mugs.
And boy, was Olivia sick...
I had her at the pediatrician's office Monday afternoon.  That pediatrician (in a whole network of other competent pediatrician's) was my least favorite of them all.  Sure, she walks around with a fancy stethoscope and a pad of "to-be-filled" prescriptions pad...
But, that's where the resemblance ends. 
She listened to Olivia breathe.  Listened to her heart.  Asked both of us the common questions. 
How long has she been like this?

What have you been doing at  home to treat it?

Any fevers present?

I answer all questions with firm replies and was quite sure she was  going to order an X-ray for my sick child.


Not even close.

Not even antibiotics made it out of this particular appointment.

Just a short and concise - "She needs breathing treatments and a little rest.  She'll be fine in a few days."
I know I sighed. 
I know I rolled my eyes. 
I know my daughter. And once my daughter gets this kind of sick, it always gets worse.  ALWAYS.Now normally, I love to be right.  I love winning arguments.  I live for competition and coming out on top.
In this case, however, I would've loved to be wrong.
Today, Olivia woke up with a high fever.  She was actually sleeping on the couch when I emerged from the bedroom.  John had said something to the effect of "She was up all night coughing.  She had a hard time sleeping."
I felt her forehead. 
Yup, you could've fried an egg on it.
She looked up at me with those cute eyes and said, "Mom?  I sound awful...." 
She yawned and got up long enough to go to her bed and sleep the rest of the morning....
I've never seen this child so incredibly without energy and so incredibly tired before... Not in the 12 years she's been my daughter...
But, this child could barely keep her eyes open.  And her cough!  Wow!  What a noise coming out of her....
And she kept complaining of chest pain.  And not just when she coughed either.  This was an "all the time pain", she would say.
So, I called her pediatrician and they said they'd call in a cough syrup with codeine it for her. 

"Ok."  I say.  "But, she's a lot worse than she was yesterday.  She's still complaining of chest pain."

They assured me that she would be just fine in a few days...

I assured them that they were wrong and hung up on them.

They don't know my daughter the way I do. 

So, with much back and forth and a lot of persuasion, I finally convinced Olivia that the hospital was the best choice for her...

That, no, they probably wouldn't make her spend the night.

And yes, Lamby could come along. 

Yes, grab your Ipod. 

And with one final complaint, we made it out the door to head to the emergency room. 

I sped to the ER. 
She seemed so out of it. 
So, sick...
I was so worried about her...

So, we make it to the ER and we sit for a very surprisingly short amount of time. 

While waiting in the waiting room wasn't that long, the hospital made up for the short wait in the waiting room where the wait actually came from sitting in a room waiting to see a doctor.  Or in this case, a physician's assistant.
She also listened to Olivia's breathing and heart. 
She ordered an X-Ray immediately and for good measure, an EKG as well.
The X-Ray showed pneumonia on the left side of her lungs.  There was no question about it. 
What a scary word to hear.  Especially when it's about your own child. 


Right there in the hospital, she was given Motrin, the beginning part of a 5 day antibiotic course, some cough syrup and strict instructions to rest and rest some more.
Obviously, school is out for the rest of the week. 
Hearing that kind of news usually has Olivia doing back flips.  Today, however, she just said, "Can we go home now?  I want to go back to sleep."
With that, we left the ER (almost) the way we went in.  We must've gotten there at a good time too.  When we left, the place was packed tighter than sardines in a can.  Loads of other "sick" people.  If you ask me, most of those people with hospital wristbands looked like they just wanted to get out of the house for awhile...
So, this whole experience will be chalked up as "Momma does know best.  And Momma won't put her child's health on the line."
She'll be feeling better soon enough.  I'm just so grateful that I listened to my really smart gut.

Sunday, April 21, 2013

Hughesville and Beaver Lake

One of the actual signs that was stolen ... thanks to my awesome
brother Jason Hughes for putting it on Facebook
A sign I made up on the computer... Can't find a SINGLE picture of any of the
Hughesville/Beaver Lake signs we went home with.  Well, actually - Mike, Jason, and Tom
got signs.  We never did get a sign for me... I stopped being a Hughes and had just become an Olley


I was sitting here, with John,  and we had started  to look at the tons of pictures we have on our computer.  As we strolled down memory lane, we came across a lot of pictures that had us laughing so hard, we almost peed our pants...
The ones though that brought on the most laughter however were the ones taken back in June of 2000.  John and I were only married for six short months. 
Worlds End State Park is our backdrop for this amazing family photo

Michael, on a chair with puppy Hawthorne...

These pictures were taken in Sullivan County, PA.  Our family used to own a cabin up there and at one time, before the place was sold, all of my brothers and John and I spent an incredible weekend up there. 
And boy, did we have fun -
You know why?
Boy, did we get drunk as you-know-what
I never thought that a game of 500 Rummy and a few bottles of liquor and beer would lead us to break laws.
But, we ended up getting so drunk that we all thought it'd be a swell idea to go stealing all the "Hughesville" signs we had passed on the way to the cabin.  We even had a plan cooked up as to what we would say and do if a passer-by had asked what we were doing in the middle of night with our cars running and lights on...
My memory of this awesome weekend with my new husband and brothers is a bit cloudy.  Not only was it so long ago - pre Olivia - but, we did so much drinking and recovering, it's hard to keep precious memories alive under those circumstances...

But, I'm trying.

I'm pretty sure we had two cars and were going to leave the hoods up so we can act like one of us had broken down and the other one was giving a hand.  If memory serves correctly, we never had to use our fibbed tale.  But, we did have trouble reaching said "Hughesville" signs and thought John and my brother Mike would be good people to perch upon...

Picture it

Pitch black.  Probably at 2 or so in the a.m.   Secluded woods on an even more secluded stretch of road.  Six drunk and giggling people who weren't from any where around there.  Some drunker than others, but all pretty sloshed.  Two cars parked on the side of the street with both hoods up.
We probably should've stayed back at the cabin.  But, you know that every idea that comes to the mind when you're three sheets to the wind is a great idea, so there was really no stopping us.

Tom, my oldest brother I think propped on Mike - Tom had some tool in his hand.  Don't know where the tool had come from.... But, Tom and Mike were giggling so much, I thought that they were going to go down, heads first into the pavement below their feet....
And they weren't the only ones laughing so hard... All of us were laughing and giggling.  You'd think we all just won the lottery.  We were having so much fun!
If we had bothered to stop and think about the consequences of stealing road signs, I don't know if we would've even done it...

I don't know... it doesn't seem as a big deal as I though it would've been.  Back then, way back in 2000, the economy hadn't crashed yet and not one of us had too much going on - bill wise.  So, even if we did stop to think about it, it probably wouldn't have mattered much. 

After these two or three signs were taken, we headed back, still giggling and laughing, still way too drunk to be out on the roads. 
The next morning, or maybe it was closer to afternoon, I awoke to the sound of John vomiting.  He had been so hung over that he ended up outside the bedroom window, puking in the bushes... He later recalls one of the cabin's neighbors staring at him as he wiped off his lip and looked up. 


The light of a new day brought on a responsibility to clean up the cabin and get ready to depart.  We had 5 or 6 trash bags full of litter and others filled with beer bottles.   We ended up mowing the lawn and vacuuming the floors.  All dishes were put away.  We cleaned so good, the place looked better than it did when we arrived. 

That was the last time any one of us would again venture to our cabin in the woods. 
There was a rumor going around the family that we trashed the place and left it in a disarray and then the place was sold. 

There are so many memories there.  Too many to count.  Just loads of good times, lots of laughter.  The visions of my grandparents, sitting at the table and drinking their coffee or eating some graham cracker pie.  The radio always tuned into a country station.  The 50's or 60's style ugly blue room.  The uglier still pink room.  The big furnace in the living room.  The covered porch with extra beds and cots.  The bathroom with the water heater in it and stand only shower stall.  The smell of back woods and fresh air. 
So many memories.  So many good times.
I am a little saddened about never being able to go up there again.  Especially because my daughter will never know the awesomeness that was Sullivan County, PA.  But, the memories live on forever in the hearts of those that did go up there to relax and do nothing for weekend stretches of time.

Wednesday, April 17, 2013

"Wayne, We'll Take Curtain Two!"

So, today's blog is about the unfairness that goes on when one needs help.
sip of coffee...
ok, here it goes...
I received my Medicare card in the mail today.  The effective date is 8/1/2013.  I already knew that my Medicare would start then. 
So, before I chose to add part B, or part D, or any other part, I decided to give them a call concerning the cost involved with choosing the different parts and to find out which plan would work for me.  Waited the entire 20 minutes on hold to talk to someone. 
"Hi, my name is Sylvia Olley and my Medicare number is _ _ _ - _ _ - _ _ _  - A.  I was wondering if I could keep my Medicaid in conjunction with my Medicare plan."
"Ok.  Let me check to see."


"It looks like you will be able to keep both Medicaid and Medicare.  But, to double check, I'd call your local Social Security office.  Would you like me to give you that number?"

I'm thinking that I've called my local SS office too many times to count.  So, no, I didn't need her to give me that information.

I wanted to give myself peace of mind.  You know me.  I can't rest till I know that all my ducks are in a row.

So, I dialed my local Social Security office and waited there for an additional 20 minutes before someone finally picked up.

I give the lady there my name, social security number, address, phone number, birth date, horoscope information....

I asked her the status of my renewal form when it was time to renew my Medicaid a couple of months back.  I haven't heard anything, so I was assuming  I was "all good".  I mean, I was still refilling my prescriptions and seeing my doctors, and none of those people told me I wasn't covered. 

more typing

I heard the lady sigh a few times.

And I'm thinking, "Gee.... I'm sorry to be calling you and ruining your day."
Of course, I don't say anything

She comes back with some terrible news for me.

"It looks like you will be losing your Medicaid at the end of this month.  John's unemployment compensation and your disability checks puts you over the income limit for Medicaid."

A whirlwind of thoughts hits my brain immediately.
I kept thinking of the expense of buying my own supplies and medications.  I mean, I spent the first 11 or so years of being a type 1 diabetic with absolutely no help from any agency.  I already had an idea of the costs associated with type 1 diabetes. 
I bought everything myself. 

Testing Strips
Ketone Strips
And not to mention all the other medications I was buying. 
High blood pressure medication
High cholesterol medication
Thyroid medication
Pain medication

On top of all of that, I also had to pay for getting my blood work done. 
All of this over a span of 11 or so years ADDS up to ALOT of money!
So, lets just say we've been poor for as long as I had type 1 diabetes and no health insurance. 
But, now, I'm on an insulin pump.  And the expenses there are way over what we can afford.   The tubing, the reservoirs, the insulin.  All of that costs great amounts of money.  And money is something that we're short on. 
Sure, there are programs out there to help.  They're called Patient Assistant Programs.  I was on one or two of them in the past. 
And they're also very hard to apply for.  You have to go to a doctor to fill all of those forms out. 
Plus you have the expense of said doctor's appointment.  And sometimes the company only allows for certain amounts of medicines at a time, no matter what you're doctor writes out for.  The red tape alone is frustrating. 
So very frustrating.
Headache inducing even.

I remember what my lawyer said when I first got disability. 
"You are a disabled Pennsylvanian.  Nobody can deny you health insurance.  You are legally not allowed to have no health insurance."

So, with those thoughts swimming around my head, it took a few seconds of "dead air time" for me to realize what the lady on the phone in my local SS office had said.

"Ma'am.  Are you still there?"

"Yes.  I'm here.  So, let me get this straight.  I have to wait till August for my Medicare to kick in, but Medicaid is dropping at the end of April?  Do you realize there will be a 3 month gap between that and actually getting Medicare?  Do you realize that I'm a type 1 diabetic??  Do you know what happens to type 1's if they don't get their insulin?  THEY DIE! DO THEY WANT ME TO DIE?????" 

Yes, I got loud.  Yes, I got angry.  Yes, I was very, very, very upset.

And why shouldn't I be?  I mean, I've been denied health coverage for years and years!!!!!  They said I was only approved Medicaid last year because I was busy fighting to get disability benefits. So, since I won my case, and now that it's all over, they can drop me.  And they will.

No health insurance company will ever pick me up.  I mean, you always hear how insurance companies can't deny you because of a pre-existing condition.  But, did you also know that you have to wait 12 months for them to start paying for treatment of those conditions?  What that means simply is, I'll be paying for private health coverage every single month, but still need to pay for my diabetic needs. 
Sure, I can appeal it.  But, if I lose that appeal, I'll have to repay all the doctor's appointments, prescriptions, blood work, tests, and diabetic pump supplies out of my own pocket. 

So, I had two options - well, three if you count that option of having no health insurance and dying because I can't afford my insulin.

Option 1
Get a what a lot of people call a "Medicaid Divorce". 
I read an interesting article on it online.

A Medicaid Divorce simply means that John and I divorce, and when that divorce goes through, only my measly disability checks would be considered assets and I could keep my Medicaid.
We have considered this option in the past.  Every time I was denied help of any sort, we'd talk about it, and then decide that nobody was going to break up our family.  And besides, even if we did do that, none of us would actually move out.  We'd still be living under the same roof.  And what happens if we got caught? 
So, every time we discussed it, we went on to talk about other things.

Option 2
A program called MAWD

or  Medical Assistance Benefits for Workers with Disabilities

It's a program that we'll qualify for, and it allows for me to keep my Medicaid till my Medicare goes through in August.  The only downside is that we would have to pay a premium each month to keep it.  It's also an income based program, but you can have a considerable monthly income and still qualify for it. 
So, I gave the lady on the phone at the Social Security office my information (what John makes and how much disability I get) and she quoted me a rough price of $90 to $100 per month to keep my Medicaid.

So, yes, that seems like a lot for someone like me.  But, I have to consider the alternative.  Paying for all my diabetic needs and other medications would easily cost in the thousands every month. 
I'm not prepared to do that.  Nor should I have to.

So, we'll be picking option 2.  We'll have to pay a little over $300 for three months till my Medicare kicks in.  Sure, money will be tight for awhile.  But, we are sort of used to that.  We've been poor for so long, it wouldn't much matter to us.

And when my Medicare does finally kick in, I'll be signing up for the Medicare Savings Plan.  That plan will help pay my monthly part B expenses and save us a bit of money every month.  I already know we qualify for that.

So, there you have it....

If I were single, I could get all kinds of help.  Food stamps.  Medical coverage.  Cash Assistance.  Housing help. 

I'm sorry, but I'm not prepared to divorce my husband to get a hand out.  It's just not going to happen.  And while I don't think less of those who actually had to do it for medical coverage (although there are those who do actually abuse the system), I simply cannot and will not sacrifice my morals or values to satisfy all the red tape to get help. 

Wednesday, April 10, 2013

An Early Summer

What beautiful weather we've been having!  The sun was shining so brightly today, I thought the squinting I was doing was going to produce a headache.
But the warm air has it's negatives as well.
I've successfully murdered five or six stink bugs and saw a fight go down between a few carpenter bees today.  I also managed to take out an entire ant colony by setting out attractive food that was covered in poison. 
I have yet to see my first spider of the year.  But, I swear I saw one and even made John kill it.  It turns out that it was just dust on the air conditioner.  But, as far as "spider drills" go, he performed very well.  And in my defense, this "piece of dust" had legs on it. 
Driving around in my car after my doctor's appointment, I opened up the moon roof and was blissfully unaware of how messy my beautiful hair was becoming.  The breeze and warmth of the day was intoxicating. 
I long and yearn for a nice, extended summer.  Full of outings and day trips here and there. 
I don't know if I'll be able to manage a lot this summer.  Being disabled (and I mean, truly disabled) puts "What are we going to do this summer?" question in perspective.  I do, however, have high hopes of fun in the sun.
I know whenever September rolls around, I'll be asking myself where the time went and why we didn't do more.  So, this summer, I really want to change that.  I want to be saying, "Wow!  We did a lot this past summer!"
We do have tentative plans on visiting "The Happiest Place on Earth" come February or March of 2014.  Who it's the "happiest place on earth" for still boggles me.  It is such an expensive way to meet Mickey Mouse and all his annoying friends.  But, you only live once.... sort of.... I mean,  I know I'll be living again after my death.  But,  I highly doubt Jesus has a Disney World up in Heaven. 
Maybe He does... who knows.  Nobody- until they experience it.  And once they do, it's a little tough to talk about...
So, hopefully, I'll feel well enough to enjoy the summer with my family and have lots to talk and blog about come Fall...

French Creek pool

Olivia and my folks on a camping trip

The river

A beautiful picture of Olivia two summers ago

Saturday, April 6, 2013

John's Bench Top Thread Injector

The sound of a sewing machine is something that I remember from way back when... (um... seriously, how long ago was that??)  when I was in 7th and 8th grade and in Mrs. Nichols-Leinbach's class.  I was 13 or 14 at the time.   I think I passed the sewing portion with a low C average.  Can't be sure. 
I can be sure of what my husband's grade was in that class however.
An 11%. 
That's right.
Eleven percent.So, imagine my surprise the other week when he walked out of his mom's home with a sewing machine in tow. 
I mean, we did talk about him making his own "camping gear".  He says he wants to save money and make "his own shit."  Ok... Fine.  What did he want to make?   Everything from tarps to hammocks has him as excited as a cat with a struggling mouse in it's grasp. 
For about a month or so, he'd say things like, "Doesn't your mom or sister have a sewing machine?"  or something like "Hey, we should get a sewing machine.  Maybe you could learn to sew."

I would laugh.  I would respond with "What?  Me?  Sew?  Are you kidding?"

I only have a sewing kit here at home to hold all the fabric glue that I keep handy, because I just don't sew.
I remember early on in our marriage, I needed to sew a button onto John's shirt and I held out my hand (to take said shirt) with great confidence and told him I'd have it ready in no time.
Two days later, I still didn't fix the button and I think I added a new line of thread to his shirt.  So, my mom sewed that button on for him and we really didn't discuss my lack of domestic capability after that.
God bless that man for staying with me for so long. 
So, after he set up his "bench top thread injector" (cause real men don't use sewing machines) he got to work on making various things. 
First he had to practice.  So, he found some old nylon walls from an Easy-Up in our shed and started sewing. 
He learned how to sew by watching You Tube videos.  Can you believe it?  Not only can you watch crazy clips of the punk kid next door slamming into the ground off of his skateboard, but you can also learn to sew.  Simply amazing!
And there are quite a lot of men out there doing it too!  I couldn't believe how many men there were on You Tube with "bench top thread injectors" (giggle, giggle) and using them to make real things! 

So, almost every night, while I sit at the computer playing Candy Crush Saga or scroll Facebook, John can be found behind me making his own camping gear. 
I did tell him that he needs to watch out.  He's getting super good at it.... He'll be making me a new purse or fixing the buttons on my shirts. 

I posted a few pics of John's latest feat with his sewing machine (ooops....)  bench top thread injector.  He made a stuff sack to hole his Jet Boil kit with room to even hold the extra fuel.

Friday, April 5, 2013

Diabetes times two

The body is a complicated machine.  It does things that the layman can't even fathom.  Most of the time, our bodies do things naturally without us even having to think about it. 
A beating heart.
A growing nail.
The list seems endless.
But, there are times when you have to help your body do things that it's supposed to do naturally.  Like make insulin. 
For instance, my body makes zero (NONE) insulin.  Therefore, I have to exogenously give myself insulin - either through the insulin pump or through a syringe.  No big deal.  I've been doing it for a very long time. 
Now, there's Olivia. 
My 12 year old. 
She seems to have gotten sort of a raw deal.  When she was three, her throat looked as if there was an alien coming out of it, her thyroid goiter was so big.  She needed to take pills to slow it down, for it was working overtime.  Her cells had started to attack her thyroid in a process known as Grave's disease- an auto immune disease.
She has since taken her medication for years and years, and now while she still have the presence of Grave's disease, it seems to have gone into remission and for the time being no longer needs to take pills for it.
They say (when I say "they", I'm talking about scientists, researchers, doctors...) when you have one auto immune disease, you usually end up having another auto immune disease in your lifetime.  I don't know how true that is, but I know in this case, it seems to be true.
For two years, Olivia's been on the verge of having type 1 diabetes.  Her GAD 65 AB tests came back very positive and she also has a mom who is type 1 diabetic.  There were a few other tests that are on the cusp of becoming positive.  Like, she's teetering on that edge.
She is also at a real risk for developing type 2 diabetes.  Her semi-sedentary lifestyle (iPod gaming, TV watching) has not helped in this arena.  While we all eat with great portion control and limit the snacking to very low-carb, high protein snacks, her lack of physical activity is catching up to her.  She's also showing physical signs of insulin resistance. 
So, what did the doctor say? 
A lot.
For now, we are to control her diet as best we can.  From my accurate record keeping of what we eat, the doctor says what we're doing at home is great.  But, Olivia spends two of her meals at school.  I could go on and on about what to eat and how much to eat to try and stay healthy, but it sounds like total BS coming from "mom's mouth".  So, she is to start seeing a nutritionist.  Maybe having someone else do the talking will make her think before she reaches for that chocolate milk or plate of French fries.
So, with much hard work, we can certainly prevent her from actually developing type 2 diabetes.  And believe me, she ain't happy about it.  But, it's for her own good and I only hope she shows the same kind of conviction and will power when her own children need good parenting.
With all of that said, she is doing well with the news of her almost diagnosis.  The doctor warned me that she'll most definitely develop type 1 diabetes in the future.  How long into the future?  She couldn't tell me.  So, we'll just have to keep having her blood drawn from time to time and since I am very familiar with the disease, I kind of know what to look out for.  Olivia is also checking her blood glucose at home everyday, and any significant change in her numbers, we'll be able to see right away. 
John has already vowed to be taking her biking and hiking a lot this summer.  While there were times a couple of years ago I would've loved to join them, it seems like it won't be happening this year.  But, I can take her swimming.  Moving in the pool is so much easier for me than moving on land, and it doesn't bother me as much either.   So, I vowed to take Olivia swimming as much as humanly possible this summer.
As I type this post, Olivia is out in the living room playing the Wii.  I couldn't be happier hearing the familiar sound of the Wii fitness going on.  Anything to get her moving would help move her in the right direction of not developing type 2 diabetes. 
I know many people with that disease, and it's not a pleasant one.  And the heavier a person is, the harder it is to shed the necessary weight to help lose that initial diagnosis.  I plan on keeping Olivia on the right track, even if it annoys the "you-know-what" out of her.  She is not going to end up with a  disease that could've been prevented with better nutrition and more physical activity.  Like I said, I know many people with type 2 diabetes, and it's not a good disease to have.  I plan on trying my best in sparing Olivia from that hurt and depression.
She already has a piss poor self esteem.  I don't know why.  She's a very pretty young lady.  Beautiful hair, she's tall, great smile and very funny sense of humor.  But, she's often comparing herself to her friends or classmates, which I know is hard to keep from doing at her age.  I did it.  I know most girls did it. 
But, she doesn't see herself as pretty.  And I have to tell her every single day how wrong she is.  She's simply beautiful - inside and out. 
So, that's it.  She has a long road ahead of her.  But, I know she can beat it.
I know she can...

Wednesday, April 3, 2013

The Wheels on the Chair go.... nowhere

So, lately it seems that walking with a cane - great distances - has been proving too difficult for me.  I want to do it.  I certainly try to do it.  I always hate myself for it later.  But, there's nothing worse than feeling like you need a wheelchair when your legs (for the most part) work. 
And my legs do work.  I can walk.  I walk with a great deal of pain.  But, it can be done.  But, most days, I will lose feeling in them, and I'll also lose feeling in my feet as well - and I never know when that will happen.  It could happen at any given time... When that happens, down I go.  I quickly find myself in that cliché commercial with the woman on the floor who's yelling, "I've fallen and I can't get up!"
I am also experiencing a great deal of muscle weakness and pain in my legs and feet. 
This is direct as a result of my neuropathy. 
With that said....
I broke down, feeling as if I had no choice, and got a wheelchair.  I would've opted for one of those power wheelchairs, but there's no where to go with it in my home, as it is too small, and there's no way to transport it around when we're out and about.  So, we went with a manual one.  One that folds up and sits in my trunk. 
So, one day after we got this wheelchair, we went shopping.  All of the motorized carts at the store were apparently "in use" and there's was absolutely no way I could walk the whole of that giant store.  I'd like to, but can't.
John took out my wheelchair, I got in it and started self propelling myself around.
Easy enough. 
Until I started shopping. 
I used to complain about the amount of racks of items when I walked behind a cart.  That was a walk in the park (no pun intended) compared to being in a wheelchair.  I took it for granted.  I really did.  The ability to maneuver around on two legs is easier than trying to do it with wheels under your ass. 
I have a new appreciation for the people who are in them (wheelchairs) day in and day out.  I have a new respect for them.  How frustrated they must be after trying to do a little shopping!  How arrogant it is for the big wig CEO's in their fancy schmany high rise offices and town homes to allow such mediocre pathways in their stores!
All I wanted was a new pair of pants and a couple of nice tops. 
And I got was frustration (and a little teary eyed - both from frustration and a bit from humiliation)
I couldn't reach the things up at the top.  I wouldn't have even been able to look at those things if it wasn't for John.  And do you think there was an associate within a mile to help? 
So, did we get my items?
Were we happy?
And I know I wouldn't have given it another thought if I was a perfectly capable individual with two wonderfully working legs.  I can honestly say, I never gave it much thought. 
And I'm sorry for that.  How ignorant of me.  How simple minded I was....
I know that little tiny peon of a post won't change anything.  And I'd be stupid to think that it would.  But, I can make it known to my few and dear readers that it's a real problem.  The only things that stores have done to accommodate the disabled is one or two closer parking spaces and some railings in the restroom. 
And don't get me started on the people I see getting out of those parking spaces.... ARGH!!   Practically doing cart wheels into the store!  That is a big frustration to me!  They put those spaces there for people who can't walk and for people in wheelchairs!  Not because your mother's aunt's cousin happened to leave their handicapped placard in your car and you're too lazy to park elsewhere.
Well, with that said....
Maybe I've righted a wrong or two by throwing this post up.  Probably not... But, maybe.
My next blog will be about Olivia and her health concerns...
Till then...