Grandma Henke

Purple is the color that has been chosen to represent Pulmonary Hypertension.   It works for me since it’s one of my favorite colors anyway.   I wonder if they chose purple because we who have this disease turn purple without our oxygen.   I tried to find out why it was really chosen, but I couldn’t so I assigned it to this balloon and think of it as “Up, Up, and Away”.  

The tests in May showed that even though I felt a little better the disease had progressed.    That turned out to be both good and bad news because it meant that maybe our insurance company would finally approve the use of a new drug called Letairis, which has proven effective for many of the people who’ve tried it.    With Pulmonary Hypertension it;s a game of “pick and choose” until you stumble onto the drug that works right for you.    What is best for one does not necessarily work for another.     We’ve now climbed the ladder from the least intrusive drugs to the more intrusive ones but it’s a ladder that we knew needed to be climbed and we’re grateful to our doctor and our insurance company, P.E.H.P., for making it available to me.  Today as I took my first little $133.00 ($4,000.00 a month) pill, I was very grateful that our co-pay is only $150.00.   

My days of laziness are over and I’m determined to write more often.    I’m hoping that Letairis makes it so that more blood will be pumped through this head of mine and the fog will lift that has held my familiar words captive for the last eight months.    With or without those words I’m going to write, so feel free to send me a list of your useable words if you find mine lack luster and excitement.     Again … Up, Up, and Away …

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Being just a hop, skip and a jump away from May is just unreal.   Time doesn’t seem to keep a steady pace; it either speeds or crawls … or both.   It crawls when you are waiting for something, speeds when you have a deadline.    Most of my winter was spent waiting; waiting for appointments, waiting for doctors, waiting for test results, waiting for prescriptions, waiting to get better, yet, now that we’re well into Spring (although you couldn’t tell it by the weather) it seems like it went extra fast.    I’ve had intentions of going out to give the motor home a good cleaning ever since we got home, and, though I hate to admit it … I haven’t set a foot in it since that day.   That’s what happens when you don’t just get right on it.   It’s called p r o c r a s t i n a t i o n.     I guess this year I could justify an excuse of health but I have to admit that procrastination could be a factor.   Fortunately, I have a husband who has been on the ball and he has taken care of the important things like the food and wet clothes.

I have to tell you the cutest thing EVER!   I have a semi anti-social cat who has been queen of the roost for over 13 years and a sweet, sort of timid little dog who has been afraid of the cat ever since she came to us three years ago.   Yesterday I was walking from the bedroom to the front of the house and Fresca wagged her tail at me, ran to the door of the utility and laid down so she could look into it.    I walked past her and she came running down the hall and wagged her tail and whimpered a tiny bit and ran back and laid back down in front of the utility hall.    I went to the door and couldn’t hear or see anything so I petted her and walked on down the hall.   The third time she did it I decided there was definitely something about that hall that she wasn’t liking so I went back and turned the light on and listened and to my surprise, I heard FiFi meow from the garage.   She’d slipped out there when the door was opened and couldn’t get back in and Fresca was telling me.      You may not think it was all that cute, but I thought it was awesome.   I love when I can see how animals think and sort through things in their heads and try to communicate with us people.  

I’ve been enjoying my grandchildren a lot the last couple of months since I’ve felt better.     Aren’t grandchildren just the best invention ever?  EVER?   And how blessed am I to have 17 of them?   They motivate me to try harder … to be the best I can be.   

This month had one very exciting thing happen.   One of my dear friends (and her husband) from the past … I mean from the WAY past … came to visit us.    We hadn’t seen each other in probably 25 years and yet, the minute she walked in the door it was just like old times.    Within seconds we were hugging and laughing and that old friendship picked up almost in mid sentence from when we moved from Blanding so many years ago.  I have been reflecting since then how blessed I am to have met the wonderful women in my life who have befriended me.    I have so much to be thankful for.

Still no medicine to stop the advancement of the disease.   That’s one of those “waitings” I was talking about earlier.    It seems to me like the people working on that are moving in slow motion.   They are on a different time frame than I am.    I shouldn’t say that … it’s not the people.  The people have been kind and helpful.  It’s the system that doesn’t seem to care about the person.   But we will keep hoping it will be approved. 

I guess that’s about it … I’m doing a lot of reading and unfortunately, not much writing.   I try to wake up the brain but it’s foggy in there but I will keep trying.  

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My writing these days has been to the diary of a support group I’ve found that has been set up for people with Pulmonary Arterial Hypertension.   It seems like that (that being the disease) has been on my mind a lot the last four months (I wonder why) and I haven’t felt it was appropriate to bring my insecurities and illness to this blog.     However, I don’t want to ignore this site so I’ll tell you a little about what is going on in my head and life.

I’m doing pretty well “on the one hand”; that hand being that I am able to go for rides in the car, walk through a store most weeks, have my grandchildren over, read, crochet, use my computer, laugh and enjoy life with my man etc.    And I am very grateful to feel as good as I do have the medical advances on my side.      I am not depressed, which is such a blessing because I have known depression and I would rather cope with illness than that.   Not to say I don’t get down … but I also get up and that is a wonderful feeling.

Now “the other hand” would be my frustrations and perhaps insecurities about all the changes in my life and wondering if or when I will be able to take on some projects again … like clean the heck out of some of my closets or book shelves, or bath and brush out the dog.    It’s frustrating to me to not be able to make the travel plans or to run up to SLC to see family.          I’m still waiting on the PAH medication but I can’t take it unless I get the approval from the insurance company because it is just too costly and I refuse to go into debt to the tune of $4,000 a month.  

There are so many good support groups found through the Internet, both for the person with the illness and their family members.    Years ago I had used another group for a health problem of one of our children.    When you are able to talk to people who are experiencing what you are experiencing it seems to validate your feelings differently and I have found it to be very encouraging.    I also have felt good about, in turn, helping other people who are new to the situation and seem at such a loss as to where to turn first.    For me, online support is preferable to a standard support group at this point in time because that would mean getting cleaned up and having to go somewhere, which is very tiring.   The place I use now is  http://www.phcentral.org.   It is also a wonderful resource for family members and friends who want to know what this disease is about.   There is another great source of help at http://www.phassociation.org.      They have an annual conference that I would like to go to.

I am fortunate because I also have a large family, caring neighbors and friends, and my blog and my new friends here.    Actually, how much better can it get.    When I used to work with people with disabilities we used to help them make charts that helped them visualize dreams to work for and it showed them who was in their support system.   It consisted of a picture (drawn or a photo) of them in the middle and then all around that person would be pictures of their family, friends, coworkers, health care people, school teachers, and coaches.   Around the outside of that would be pictures of the things they want to work for.    As I have been writing this I have imagined one of those with everyone surrounding me.    I suddenly had an epitomy of how it might must have helped them.    It feels like a big warm blanket of love and makes you feel you can handle anything.     Thank you everyone!   Just knowing you are out there is encouraging.    You don’t even have to say anything!

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Since today was a Costco day I went all out.   Even though it takes me twice as long to get beautified … I went for it.   No holds barred.   I even pulled out the ceramic hair straightener … I mean we’re talking BEAUTIFIED with eyebrows and a touch of mascara …  the whole schmole. 

We took the old brown van today because the purpose of this Costco adventure was to buy two new toilets …  shiny new, white, and HIGHER.    Our old toities had to have been made for small children’s bendable bodies instead of the unbendable bodies of senior citizens.   

It’s been a while since I’ve been out of the house, so we added another level to our excitement and decided we would really splurge today and eat out.   Mmmmm we love those Costo hot dogs.

Well, we made it over half way there before the van died.    We were sitting at a red light in the middle of fairly busy traffic when it turned itself off and refused any and all attempts Lynn made to start it back up.    Here we sit in a line up of traffic … one old, white haired man with artificial knees and one old, beautified woman on oxygen.     What do you do?

Apparently all you have to do is sit directly in front of a few green   lights until all of a sudden a tall dark stranger appears, like a genie coming up out of an old lamp.     Thank goodness he was a “take charge” kind of genie and before we knew it he’d flagged down some help and stopped traffic so they could push us around the corner and into a business parking lot.    It makes me feel warm and fuzzy just to think about it!     I almost fell in love with that tall dark stranger before “poof” he was gone.

The problem was somewhere in the fuel line and Lynn figured it would start back up after things cooled off (I presume he meant the car) and we could limp our way home with it by cooling in other parking lots along the way.   To myself I’m thinking “we’re in for a really lllloooonnnngggg day”, so I suggest we call a tow truck.    Honey’s not sure that we have that kind of insurance on the old van so we just sit and wait; thinking about those hotdogs at Costco while our stomachs grumble.  

About 45 minutes later it did start up and we made it about three minutes down the road before it happened again.     This time, however, we were out of the busy traffic and coasted off onto the dirt where there was nothing but us and the tumble weeds.    I suggested we call a tow truck.    Honey decided to call USAA instead to ask if we have that kind of coverage.   Not only are we covered … the wonderful lady who answered the phone zero’d in on our location, called the tow company herself, and sent them straight to us by using the GPS tracker in our Iphones!    Wallah!!! It was like “Your wish is my command”.   We had us a another genie!   I could almost picture her with her sparkly turban as she rolled her hand several times before her face and granted our wish.

A half an hour later our little, very old, brown van was being loaded onto the back of a gigantic red, white, and blue … humongous truck from Freedom Towing.    Cameron, the driver of the tow truck, (otherwise known as the third genie) was friendly, helpful, and efficient … exactly what you would hope for at the end of a long afternoon.    The final lucky straw, was that he lives just three or four blocks down the road from us in Ivins, so after dropping our van off at the repair shop in St. George, we ended this long, adventurous afternoon by being deposited right at our front door.   How great is that?   The only thing we really missed was the hot dogs.

We didn’t make it to Costco, but thank you Heavenly Father for helping us to meet up with so many kind, helpful people today.   It was quite an adventure!   

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FiFi and I had fun making Valentines today.    It wasn’t in my plan to have her help but she’s one of those friends who likes to stay involved, especially if she thinks my attention to her has dipped below 100%.    After we finished the Valentines we typed “folding hearts out of dollar bills” on Google and it turned out to be a busy day for me when all was said and done.

We found this site and I thought, “just how hard can that be”?   The directions were actually written out very well, and if you go to the site you’ll see there is even a video that takes you through it step by step.  The problem?   I zigged when I should have zagged … and I kept zigging in the same spot for over an hour until I almost changed my mind about doing it.   I pert near wore the first dollar clear out by the time I figured out what I was doing wrong.  It’s just a good thing I wasn’t trying to make a living at it because if I’d been paid by the piece I think I’d have starved.   By the time I was finished, twenty hearts later, I was whipping them out without even looking at the directions.   I’d go so far as to say I became a pro.    You be the judge.

I like them this way, where it looks like there is a pretty white flower on the front … but this is how they look with the suggested quarter added …

By the way … for you Granny’s with less grandchildren and more money … you can use $5 or $10 … or however high your income goes.

I shouldn’t be posting this until after Valentine’s Day because I know there are probably four of my grandchildren who will read my blog before then … but in case any of my readers want a cute, inexpensive idea to add to their Valentine treats I have to post it now.    So, Aubree, Curtis, Mikayla, and Kaitlyn … you have to keep it a secret, ya hear.

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