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.  

Yesterday for a little while there were eight beautiful, funny grand daughters here at once.   The five older girls are fun to talk to.   They fill me in on their activities at school and we laugh at silly things that happened in their day.  It’s fun to hear them laugh and talk together as they catch up on their news.   

Listening to the three little ones chatter and giggle as they dressed my magnetic paper-type dolls was highly entertaining .    Abigail has just turned 5, Ande is 3 1/2, and Olivia is 2 1/2.   Here’s how that conversation went.                   

Ande:   “Oh, this one doesn’t have any pants on!   Now that’s gross!   (looks at me in disgust as if it was me who put her away without seeing that she was properly covered).

Abigail:  “But it would really be gross if she didn’t have underwear on.”

Me:   (Laughing with the giggling girls)  “I have to agree, Abby.    That would be pretty gross.”

Ande:   “I have underwear on and I’m not gross.”

Abigail:   “So do I.   I have underwear on.   I’m not gross.”

Olivia:  (Shrugs her shoulders and looks at me with concern)  “Well, I not even potty trained yet.  Soooo …?”

Me:    “B-u-u-t, Do you have a diaper on?”

Olivia:   (Sighs in relief) “Oh … I have my diaper on, so I not gross too!”

Me:    Laughing and hugging my three entertaining little girls … “Thank goodness none of you are gross!”

*****

You know … I might not be on the right “pill” yet, but I do believe in the old adage that “LAUGHTER IS THE BEST MEDICINE”!

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!

My blessings have been on my mind so much today I had to share my feelings through two of my favorite things.      

                      Lord Forgive Me When I Whine
Today, upon a bus, I saw a lovely girl with golden hair,
I envied her…She seemed so gay….and wished I were as fair.
When suddenly she rose to leave, I saw her hobble down the aisle;
She had one leg and wore a crutch;
But as she passed….a smile!
Oh, GOD forgive me when I whine, I have two legs.
The world is mine!
I stopped to buy some candy. The lad who sold it had such charm.
I talked with him. He seemed so glad. If I were late ‘twould do no harm.
And as I left he said to me, "Thank you. You have been so kind.
It’s nice to talk with folks like you. You see," he said, "I’m blind".
Oh, GOD forgive me when I whine, I have two eyes.
The world is mine.
Later, while walking down the street, I saw a child with eyes so blue.
He stood and watched the others play. He did not know what to do.
I stopped a moment, then I said, "Why don’t you join the others, dear"?
He looked ahead without a word, and then I knew he could not hear.
Oh, GOD forgive me when I whine. I have two ears.
The world is mine.
With feet to take me where I’d go, With eyes to see the sunset’s glow,
With ears to hear what I would know…Oh, GOD forgive me when I whine.
I’m blessed indeed. The world is mine.
Author Unknown

Look into your heart

Lynn and I arrived at 12:15 PM, fifteen minutes early, and quietly took two empty seats in the waiting room where an assortment of other people were nervously waiting for various heart/lung procedures, all of us trying unsuccessfully not to think of the possible, but rare, complications.    I mean, after all, we were here so they could run a camera up through my groin into my heart.   We both knew that in rare cases people had blood clots afterwards, which could cause strokes or heart attacks.    You don’t like to think about those kinds of things but it’s hard not to think of the remote possibility that you could go inside and not come out the same person.  

When it was our turn, I was asked to remove my clothes and put on one of the infamous hospital gowns that cover you well in front but don’t quite connect in the back.   “Don’t worry about that”, the nurse told me as she had me lay down on the gurney and covered me with a sheet, “they take the gown off for the procedure anyway.”  Somehow that didn’t provide me with the comfort she’d obviously been trying to provide. 

From here, let’s skip to that magical moment when I’m suddenly on my back in an ice cold room, chatting with my surgeon about football and hockey. (The surgeon, by the way, looks like he is probably sluffing high school).  During our little chat I noticed a small screen off to my left showing a movie of what was obviously a human heart.     It was beating rhythmically, “tha thump, tha thump, tha thump, tha thump”.  

“Is that MY heart,” I ask in amazement as I realize he already has the camera threaded inside of me and is busy taking pictures.    When he replied that it was and adjusted the screen so I could see better I said, “I can’t believe that I am actually looking at the inside of my own beating heart.”     

He answered, “To tell the truth, I still can’t believe I’m standing here able to do this either.”     It was a reverent moment for me and I was surprised when just a moment later he said, “That about finishes it,".     

How could he be done already?     All that worry for what seemed like a mere 10 minutes to do the test.   And then he was gone, nodding to his assistant to finish up and put pressure on my upper leg until I was ready to be taken back to my room.    While he was doing that I thought about the miracle of life, how we are put together, and how one small heart keeps us alive; beats on … night and day … day after day … year after year … sometimes for 100 years.      I was in awe as I thought about it all, especially that it would take the hand of God to make something as miraculous as my heart.

Minutes later I was wheeled  back into my room and Lynn told me I’d been gone for over two hours.   I guess the Valium and whatever else was put into my IV worked their magic because I swear I was awake for it all and was gone for a mere thirty minutes.

The findings?   Although there are signs of fibrosis and the test did confirm the diagnosis of PAH, the good news is that the disease hasn’t progressed as much as they suspected.    The next step is to get the approval to start a medication that will hopefully slow the physical progress of the disease and also help me to add some every day physical activity back into my life.   

The information on the product:

• Salonpas Pain Relieving Patches temporarily relieves mild to moderate aches and pains.
• Salonpas Pain Relieving Ultra Thin Comfort Stretch Patches Ultra Thin Comfort Stretch – Pain Relief Patch.
• FDA Approved Non Prescription Pain Relieving Patch.
• Menthol 3%, Methyl Salicylate 10%, Pain Relieving Patch.

My findings:

I tried it on my shoulder for muscle ache and on my wrist/thumb area for tendonitis.  I immediately liked the warmth and smell of the menthol.      Call me weird but I find that to be a comfort smell similar the aroma of hot chicken soup when I have a cold.  The thin, comfortable patches stayed active for 6-8 hours and I found it was helpful in relieving the pain and was easy to use.    The ones I tried on my shoulder stayed in place until I removed them myself but the patches I tried to fit around my thumb and across the back of my hand didn’t stick as well so I held them in place with a strip of gauze.    Perhaps they already come in a shape that is easier to fit around a thumb or finger but if not it’s something I think they should consider.     I would recommend them (especially for my Boomer friends) and they are definitely something I will try to keep on hand.

Technorati Tags: Salonpas Pain Relief Patches,moderate muscle ache

If you go to that link it explains what I was diagnosed with yesterday.   You can imagine, yesterday was difficult … with the crescendo being a meltdown of tears and snot.     I don’t know why that was necessary, since pulmonary hypertension is what the doctor and I suspected .   In my defense, (if I needed a defense) there is just something different about “thinking” it and “knowing” it.   A final diagnosis makes you feel a little panicky and vulnerable when it is linked with your name.    Lots of you have experienced this first hand, I know.  

But did you know tearful meltdowns are good for you?    On the web sight “Tranquility is Yours”, I read what I already knew; that crying is one of our body’s natural means of tension relief.   Not only that, and this I suspected but did not know for sure, crying releases bad chemical buildup surrounding stress.    What’s more, emotional tears …

contain higher concentrations of proteins, manganese,
and the hormone prolactin which is produced during stress-induced
danger or arousal,” Dr. Carrie Lane of the University of Texas.

Does anyone know where I can get a used portable oxygen concentrator? similar to those at that link?   It would sure make life easier.

Little girl dog is sitting here right beside me as always.     Sometimes it’s hard for me to actually remember she’s not human.     I don’t know whose mind is bending to meet the other; whether it’s hers or mine the connection we have is uncanny.     I’ve no idea how to judge what her IQ is, but besides having a very remarkable vocabulary, she can spell TREAT, OUTSIDE, BED, HUNGRY and CAR.     That’s not bad for someone whose native language is Canine.     I just love the feel of her warm little body next to me … like a sweet little heating pad.   

I’ve told myself not to think about breathing but I still think about it most of the day.   It’s kind of hard to ignore the whole procedure when there is an oxygen tube hanging from the middle of my face.    I mean the middle of my face!    Could it be any more “in your face” than that?    I think it would have been a good design to put our nose holes on the back of our necks where they wouldn’t cause so much trouble.   It would have been a lot messier to blow them but you would be a lot less apt to stick them into other people’s business, and it definitely would have been easier to wear oxygen and not have a hose between you and everything you go to do.   Hey, but I’m not complaining.    Well, I am complaining, but I don’t want to.   Maybe I will have to come up with some kind of nifty thing like running the hose up beneath the back of my shirt and around my neck.    I’d have to secure it somehow so it wouldn’t creep around to the front, and then I’d have to remember to turn as many times to the left as I do to the right or I could have a whole different kind of problem to face.

Uh oh, time out here!    There are either two spiders in the corner of the ceiling or I am hallucinating.    I’ve been watching these shadows for a couple of minutes now and I’m about ready to go for the broom.   Who am I kidding, the thought of doing anything to those two blobs on the ceiling creeps me out.       The older I get the more those crawly/scampery things creep me out.   I think it’s because I have to get so close to see what it actually is that I almost have to look into their beady, little, orbital eyes.   And they move fast when they’ve a mind to move.         I wonder how wide the yellow streak down my back will be in another fifteen years? (I can always camouflage it with an oxygen tube.)

Well, ten minutes later and I’ve made my decision.    I’m going to bed (my bedroom is clear on the other side of the house).   If the blobs are still there in the morning I’ll whack the tar out of them (sorry to you folks who are spider lovers).    I really would do it tonight, but I’m afraid that with every whack of the broom I will let out a shriek … that’s how it usually ends … and I don’t want to wake up the cute girls in my guest bed.

Good night John Boy …

While we were staying right on the coast line I felt so good I kept telling Lynn over and over how good I felt and how much easier it was to breathe there.    I’ve been struggling with oxygen issues for several years now.

Well, the closer we got to home the heavier the air got again until by the time we reached Salt Lake City, I was out of breath at the smallest exertion and had a constant, nauseating, dizzy headache.   My oxygen saturation levels dropped to the low 80’s during the day and below 50 for most of the time I was asleep.  Monday I went to the doctor and  she said wanted to start me on oxygen.   She couldn’t see a reason for my “decompression” and referred me to a pulmonologist who I will be seeing on Wednesday.   

I felt pretty good about it until the oxygen was delivered to our home.     I was totally unprepared for the fact that I was to be on it 24/7.    I don’t know what I expected, but I had a hard time controlling my tears when the poor man carried everything into our living room.    All of a sudden I felt very old and “crippled”.    After he left I held a private pity party (well unfortunately Lynn was unwittingly invited) and I shed a few tears and wallowed off and on all afternoon to the extent that I failed to notice how much better I felt on it until the next day.       But, all of that is behind me now and I am feeling much more positive.    I am fine.    There is much to be grateful for and taking a deep breath is not at all under rated.

So … even though …

I really don’t like being tethered to an oxygen machine by a 50 foot green umbilical cord and I can’t quite convince myself to wear it outside of our home as instructed (except for when I’m in the car) and even though I’m not sure what I’ll do come Sunday and the three hour block …  I have plenty to keep me occupied and happy.   I thank my lucky stars for the fabulous man I married and my wonderful children and their families … and my siblings.    I plan to enjoy them for many years to come.    Lynn and I have already refined our eating and have been losing weight for the last couple of months and we are starting a good exercise routine now … so it can only get better and better.

Worst case scenario … I may be forced to sit still for a while and catch up on my writing.   I’ll let you know how it goes.   (Big smile!)

Ryan, remember the coke in the face story?    Well, this is me sitting on the ground yesterday after I hit a pot hole and twisted my ankle.  I had a mug full of diet coke and the lid flew off and all the diet coke went into my own face just before I did a full body slam face first into the stickers.   For your information, after the lid came off my mug I made a hole in one with one of the girls.   You will note my first thought was to have Dad take a picture of it all for my blog.    Well, not quite “all”.   He offered to take a “mug shot” of my spectacular bruise today but I think not.        The rest of my body isn’t quite used to doing a triple gainer into the stickers either and today I am moving so slow I decided to take a sick day and lounge in my pj’s.     And then, according to the Allsop way of looking at misfortune … I began to chuckle.