HAPPY NEW YEAR

I love this sign and I love all the people who do this.  Blessings in the New Year to each and everyone of you.


                       

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REALITY

A year has already gone by.  It was last November when I was diagnosed with Pulmonary Fibrosis.  I think I spent the first three months in shock, maybe longer, maybe I still am, in shock, that is.  I come from a family where all the woman, on both sides live well into their 90's.  I'm not going to be one of those woman, unless I had a lung transplanet, and I am too old to be considered.  It's weird knowing your demise is sooner instead of later.  When I first was diagnosed I thought I could write about all of my feelings about this disease on my blog, but I have discovered that I can't do that.  Just tonight when I started to write this post I realized that talking about death, especially mine, is just too hard.  I just can't put myself out there.  I wish I could because I think it would help me accept my disease.  I wonder if others with terminal diseases feel this way.

I will tell you this.....it's lonely.  No one wants to talk about it and mostly people either pretend there is nothing wrong with me or they go way overboard with the kindness.  Neither one of these reactions help me one bit.  A few of my really close friends treat me just the same as they always did.  I am grateful for that.  They ask how I'm doing because they really want to know.  That feels good.  What I want the most is for people to act the same as they always have.
I have to start using oxygen during the day now.  I get out of breath if I go to the grocery or the mall.  This will bring on more of what I don't want.  People who know there is something wrong (because you can't hide oxygen tubing when you are wearing it on your face) and look at me with pity.
I guess it reads like I'm kind of having a pity party right now though.
Honestly, I don't feel sorry for me.  I am just sad about leaving the ones I love.

Okay, for saying I couldn't put it out there, I guess I just have...kind of.  I promise everything I write from now on won't be a downer.  I plan on enjoying the hell out of the rest of my life.  Sometimes though, the thoughts go deep.  It is what it is.

TIME

Tomorrow is my oldest child's 44th birthday. How can this be?  Where did all that time go?
 I know I put her to bed just a short time ago.  I watched her sleep with those little brown curls spread out across her pillow.  I loved watching my babies sleep.

She always woke up happy and ready to go.  Her favorite songs to sing were "E-iii Donald" her own special version of old McDonald had a Farm, and Delta Dawn.  Now her youngest child, Jake, who is two, sings his favorite song "Head shoulders knees and toes. I see so much of her in him.

video

It is so weird how fast time goes.  When you are young it drags, when you are old it goes so fast and you want to say...stop, just a little bit slower please.  I want to enjoy every moment of this time...and still it races by. It's hard to watch those sweet grandchildren go up so fast, harder yet to see your own children age.  Eventually you have to look in the mirror and see your own aging face :)

My sweet girl is now grown and watching her with her own family brings me much joy.  I am blessed to be her mom.  Happy Birthday Jen!

IT IS WHAT IT IS

I love this poster, saw it on Facebook today.  This kind of describes my life the last 10 months.  I finally feel like I have a good doctor, who cares about me.  Since Jan. I have been taking the medicine that is suppose to slow the disease process and my latest CT scan showed very little change in my lungs.  I have also been given the ok to make beads again.  That makes me happy, although I did start knitting during this time off and I've really started to like it...a lot.  Now I have a collection of yarn to go along with my collection of glass.  I've spent the last couple of days cleaning my studio, so maybe I will have some beads to show in the next couple days.

SILENCE EXPLAINED

I am probably the world's worst blogger.  Since my last post Sara has been in the hospital twice with a shunt malfunction.  Hank was in once with double vision, and I have stayed away from being a patient myself.  It seems that we have just had a huge black cloud over us for a long, long time.  I refuse to be deterred from my effort to be and stay happy....black clouds or not.
My grandchildren continue to grow and bring so much happiness to my life, I am still breathing, life is good.

SO TRUE

Found this on Facebook.  Love it!!

AND SO IT GOES

Since I wrote last my sweet Sara has been in the hospital twice,with a possible shunt malfunction and an UTI.  Her shunt was repaired, but we are sitting on a time bomb because her shunt is 32 years old and antiquated by today's standards.  Shunt replacement is a surgery with many risks so we will continue on until it just stops working.  It's so hard to see her in pain, or scared, since she has no words to tell us how she feels, or what hurts.  We were in a great hospital with wonderful staff and they took very good care of her, but one of us was at her side constantly.

I saw my pulmonologist this past week.  I won't know if this new drug is slowing the disease process until I have another CT scan and that won't be for 3-4 months.  I waited 2 hours for him and then he was only with me for about 4 min.  Why does this happen...overbooking? Too many people with the same disease and not enough doctors to follow them?  Emergencies?  Who knows, but it isn't good for the mind of someone newly diagnosed...there are so many questions, so many fears.....and no time to ask the questions that haunt me.

I've discovered that having a disease with no cure is very lonely.  No one wants to talk about it.  It's as if we don't discuss it, it isn't there.  Or maybe people think they shouldn't ask me about it because it will make me think about it......like it is ever off my mind.

WORDS OF WISDOM

I saw this on Facebook

TIME TO CATCH UP

This is probably a boring post but it is what has consumed me lately.  This past month has revolved around obtaining medication.  I was put on a drug called Esbriet.  It doesn't stop Pulmonary Fibrosis, but it does slow the disease process down.  The first 6 weeks were free, and I guess that was to see if I responded ok to the meds.  This med gives me hope, and for right how there are only two of these drugs out there.
I was notified about a month ago that Caring Voices would pay for the first year and then re-evaluate every year.  Next to be called to into play was my insurance company.  Since I am on Medicare I get my health insurance through them (which I pay for every month)   Medicare denied the first request although there are only two drugs for PF on their formulary and they both cost the same amount.  After a second request from my doctor, who reminded the insurance company that there were only 2 drugs approved to slow down PI, they agreed to pay their share. By the time this all happened, I had been without the drug for almost a week. This scared me.  I was doing nothing positive to slow down this disease.
Now here is the part that just blows me away.  This drug that I take a normal dosage of, 9 pills per day, costs $100,000+ per year!!!!!  If I had to pay my portion, which is 20% per month, I would be liable for $7,800 per month.  Who can afford that?  It is beyond my comprehension.
I am so grateful for Caring Voices for the part they have contributed to my health, and my hope, but I have a real problem with the government trying to tell me that they weren't going to pay for a drug that is one of two drugs available for people like me.  All I want is a fighting chance to try to stay ahead of this disease with no cure.  I know I'm 71 now, but I'm not done living yet.  I have so much I still want to do and see.  I have grandchildren that I want to see grow up.  It would be wonderful not to spend two weeks on the phone trying to get this straightened out.

This is a lesson I learned many years ago, after my sweet Sara was born.  You have to be your own advocate(or in Sara's case, my child's advocate)  No one is going to do it for you. I got the pills today!!  I got them because I called my doctor's office, my case manager at the drug company and my insurance company every single day.  At first it bothered me that my case manager would say she was going to do something and then I would find out the next day that it hadn't been done, so I started calling her 2 times a day.  If nothing else, I AM tenacious and I do not give up.   I will sleep better tonight knowing that little drug is making it's way through my body and hoping it is doing everything is was designed to do, even if it does cost a whole lot of $$$$.  You can't put a price on life in my book.  I treasure every minute.

A HOPEFUL BEGINNING

The pills arrived today.  I hope this is truly a new beginning for my poor lungs.  They won't stop pulmonary fibrosis, but their job is to slow the process down, until a drug that stops the disease comes on the market.  I took my first pill with a Starbucks frappicino...frappicino's are kind of like champagne to me.  Besides I am suppose to have very limited alcohol intake, which is easy, since I  drink one glass of wine a month.

Also today, my night time oxygen arrived in the form of an oxygen concentrator, which is kind of amusing, since I have two concentrators in my studio and they are my oxygen source for making beads.  I wonder every day if making beads is what started all of this.  I always wore a respirator when using enamels, but many of the glasses I use have metals (silver, gold, copper and lead)  I have a ventilation fan that goes to the outside air, but the thought crosses my mind, is the thing that I love killing my lungs?  No one knows for sure what causes Idiopathic Pulmonary Fibrosis.  So is my fear unfounded or real?

Some days I think I should just stop, I'm nothing special as a beadmaker,   Then I see a beautiful bead and that impulse to go to my torch and see what I can create takes over.  It's like a siren song. Right now I'm knitting, crocheting, drawing, and planning a small quilt hanging, but my glass studio still calls my name, over and over again.

What if 10 years down the road, when I am 80, ( and can no longer hold a steady mandrel) I find out that beadmaking is the cause of my disease, but I continued to make beads.  Actually if that is true, then I probably wouldn't make it to 80.  BUT what if I stop now and find out the glass didn't cause it?  

I wonder......are there any other beadmakers out there with this disease?