Friday, December 31, 2010

Goodbye

The last day of 2010.

The year offered many anniversaries. Milestones of a life.

August was the five-year mark for the diagnosis that changed my life. With the addition of a medicine in September, I feel better than I have in a long while. I can complete normal activities.

Through Facebook I have met many others like me. Each of us walking his or her own PH path but at the same time a cooperative journey.

I learned much about myself. I faced emotions and challenges. I grew in ways I could not imagine.

Every now and then, I know you are there, Dude.

Later.

Thursday, December 30, 2010

Havin' some fun

I went for the comfort foods when I shopped yesterday. I have cheeses to make queso, mac & cheese (you are at fault, Colleen) and spaghetti. I also bought pork chops and cheddar wurst. Now if I can make myself cook. Ha.

I look forward to lunch with Boopie and the youngin' Friday. In our effort to give our bucks to every place in town, we will try Cowboy Gelato. Burgers, pulled pork sandwiches and gelato. Should be interesting. Kinda pricey, though.

Today marks my bubber's 58th year on Earth. Happy brfday!!

Wednesday, December 29, 2010

Nag, nag, nag

Pogo fusses and fusses at me. I have fed him numerous times and he still gripes. I wish he would just spit it out. Enough complaining, time to take action.

Connie and I went to the store to stock up just in case the next foray into winter comes our way. The weather guys say either above us or on top of us. I am now prepared for a couple of weeks of looking in the cabinet and refrigerator for something to eat. Nothing appeals yet again. But I am well-stocked. Ha.

I grow sleepy at 6 p.m. Well, I did get up at 3 a.m. I think I exhibit symptoms of brain freeze, too.

Later, Dude.

Tuesday, December 28, 2010

Say what?

I dreamed about you this morning.

I had a gallon size plastic bag of information and newspaper clippings to show you, but I could not find you. I had followed you to a huge older Victorian-style house. I was not sure I wanted to reveal myself to you. A friend and I wondered through the house and just about the time I was ready to give up, we came across you asleep sitting up on a couch in a dark room. My friend left the room by one door and I decided to leave by the door I came in. I lay on the porch for a long time trying to decide whether to wake you up and let you know I was there. In the end, I decided I did not want you to know I had followed you and I was getting ready to leave when I woke up.

Whatever it was I wanted to show you, I knew you would not be happy.

What are you trying to say, Dude?

Later.

Monday, December 27, 2010

Happy day

One of the youngin's came to see me today. After some caffeine, she headed back to school.

This youngin' has an old soul. I am old enough to be her grandmother, but when I visit with her, the age thing evaporates. She possesses many attributes that will take her far. I count myself lucky to know her.

Pogo put his stamp on my friend. He rubbed and rolled and tried to bite her hair. He left half a cat's worth of fur on her dark pants. Sorry!

I allowed my apartment to pretty much fall around my ears the past few days, so when I got up this morning, I had to bust butt to make it presentable. Now I can lie on the couch and not feel so guilty.

My body tells me the fuel I have chosen this past week fails. I need to return to the veggies and fruit.

Later, Dude.

Sunday, December 26, 2010

Je t'aime

Je suis triste, peu importe comment vous le dites.

Tu me manques. Plus tard, Dude.

Saturday, December 25, 2010

Thursday, December 23, 2010

Sweeeeeeeeet

Bill introduced me to Harry & David a few years ago and I fell in love. The boys can do no wrong. I was surprised when the FedEx guy rang my doorbell yesterday, but once I saw what he had for me, I practically hugged him.

I played a bit of a torturous game with myself. What could be in the boxes? They had heft and did not rattle. Finally I could no longer wait. I grabbed a knife and began carefully cutting the tape.

Truffles!! I opened the other box. More truffles!!

I allowed myself to bite into one of the sinfully rich confections. Immediately my taste buds spasmed. The silkiness of the truffle's interior. The wonderfully rich dark chocolate shell. A chocoholic's dream.

I allowed myself a second but the richness prevented me from consuming the whole box in one sitting. Back in the day when I was a young foodie, I probably could have eaten my way though half the box. Ahh, the good times. With the years came a bit of wisdom and restraint. (The cast iron stomach has erroded over the years, too.)

Some days I find myself yearning to talk to you.

Later, Dude.


Tuesday, December 21, 2010

I mean well, but I often let myself and others down. I commit to a project, procrastinate, then berate myself when I do not fulfill the promise. Part of the problem lies in the inability to say no; the other part involves the pleaser part of me.

Yesterday I did quite alot of walking. After my final treatment, all my joints ached and hurt. A couple of Tylenol later I went to dreamland.

More shopping today. Hopefully the last of it.

Later, Dude.

Monday, December 20, 2010

In denial

http://www.youtube.com/watch?v=czR2bHg_4c8&playnext=1&list=PL162A86D5D846780D&index=22

Denial. Such a small word with a large meaning.

My disease received its official name in August 2005. I read numerous entries on the Net. Most information was outdated by at least five years. Talk about gloom and doom. Somehow I convinced myself that I did not feel that bad. Thus began my friendship with denial.

Getting more accurate information only served to shore up my denial. I was not on Flolan so I must not have a bad case of PH. Picking up more than 10 pounds this once cannot hurt. This cannula bothers my nose, I do not need the o2 right now.

What does chest pain mean? I am not in pain, therefore I do not have chest pain. Cyanosis? My lips and nose are blue? Really?

A certain amount of denial keeps us from losing our minds with worry. I have PH. No cure. Medicines sustain me; eventually they cease to work. Denial comes into play, otherwise I might as well curl up and die now.

Am I angry? No. Am I sad? Often, though not so much for myself as for others who have the burden of a chronic, fatal disease. Those who are young. Those who are brilliiant. Those who never know anything else.

Did I squander my life? All the choices belong to me. I own them whether I admit they are mine or not. Denial works for naught here.

I can pretend (or deny) all I want, but the truth always wins.

Miss you, Dude.

Later.

Sunday, December 19, 2010

Zilch

Not today either.

Later, Dude.

Friday, December 17, 2010

And ..... a-c-t-i-o-n

I woke up today wondering why I am where I am.

My PH dictates the options for me. Going undercover and writing a story about the homeless will not happen. On the other hand, writing about life as a shut-in raises possibilities. I know I am not J.D. Salinger, but writing might be fun to try.

The bed speaks my name promising warmth and comfort. The kitchen shouts in agony as one more dirty dish joins the pile. The boxes line up in the bedroom, assaulting my eyes. A stack of papers litters the top of the printer threatening to topple in avalanche fashion. The floor no doubt has more cat hairs than carpet fiber.

OK, Dude, time for action.

Later.

Thursday, December 16, 2010

* *

I wish I had some swish and swallow. The lovely antibiotics Doc PCP gave me for my leg have caused another problem -- thrush. My tongue rebels and punishes me. My lips are dry and cracking. *whine, whine*

I have added four more pills to my regimen. Doc wants me to take 600 units of calcium with vitamin D twice a day and 1000 units of vitamin D. Then for my heartburn I am adding Prilosec and Maalox. *woo hoo*

I pretty much slept all day today. The skies shifted to their bleak, winter color and my mood followed suit. Escapism at its best. *yawn*

Miss you, Dude. *sigh*

Later.

Wednesday, December 15, 2010

A bump in the road

The final Tyvaso bump kicked my butt. I felt totally awful, but it took Connie to make me realize why. Duh!! After some Tylenol, I lay on the couch and pretty much took a whole-day time-out.

Never in my pudgy life have I thought eating would not appeal.

Many years of my life revolved around food. I wrote a food column at the newspaper, "Table Scraps." I have not met a fruit or veggie which failed to become my friend (Well OK, maybe one or two). I enjoyed listening to other foodies describe the layers of flavors in the bechamel like one discerns the woody flavor of a fine wine. Hunting down and tasting new foods thrills me as much as a collector of rare books finding a first edition.

A trip through a store like Whole Foods serves as a vacation for me. Because of my travels as a food writer, I got to try cabra, breadfruit, peanut soup, quail, duck (my family was not hunters) and ostrich. I enjoyed traveling, too. Jamaica, Seattle, Orlando, Richmond and San Diego.

When I went to Europe, I was more interested in the Food Hall at Harrod's than the clothes. Cemeteries came in a close second. In Germany, I ate roasted suckling pig that was brought to the table on a board, and yes, there was an apple in its mouth. In Belgium, I bought chocolate. I had mutton stew on a cruise (ugh, it was awful).

All that love of food disappeared. These days I expect something in the cabinet or refrigerator to jump out at me when I open the door. "Eat me today. Please!!" The pleas fall on deaf ears until I am so woozy I grab the nearest cracker or cookie. I have lost another pound. I never, ever thought I would say this: I really do not need to lose any more.

OK, Dude, I am outta here.

Later.

Monday, December 13, 2010

Dream weaver

http://www.youtube.com/watch?v=8nn0L6055gs

Our subconscious speaks to us through dreams, I have heard.  

As a child, I had a couple of recurring dreams, both involving flying.

In the first, if I held my breath, I could run off the top of the house and fly. The flying was floaty and fun.

The other one I could fly like Peter Pan. I know I had this dream because of Mary Martin's Peter Pan on TV. In my dream, the "wires" that allowed me to fly were spider web fine. They tore and I could not wipe them off my nose and mouth. I felt like I was smothering.

As a young adult, I dreamed I was in a church balcony which was so steep, any false move would hurl me over the edge. A variation of this, which also recurred, involved being lost in a church and climbing many, many stairs.

One dream I have had off and on my whole life disturbs. I hear noises and see flashes of light. I go outside and see bombs falling like firecrackers and I think to myself it is the end of the world.

Nowdays I dream but do not remember. Occasionally I can recall bits and pieces, but if I try too hard, the diaphanous recollections dissipate.

Dream on, guys.

Later, Dude.

Sunday, December 12, 2010

From the mind's file

My mind churns with a song I cannot remember the title of nor can I get the noggin to give up the name of the group. My mind's file system for music lacks finesse. Though I love music, cataloging titles and artists never happened. Oh sure, some songs I can almost sing backward I know them so well. Others float around with a snippet of lyrics or a tittle of melody. Sometimes Google can find a title with the bit of information I offer, other times I do not offer enough. Days later the information pops to the surface.

My memory in other categories could win the Nobel Prize for Recollection. I can usually pull the needed bit of information pretty quickly. Movie titles, book titles, lyrics swirl around my brain. Sports stats pretty much the same. Players I usually remember by a physical trait -- hair tops the list.

Journalism is a transitory profession. Most journalists hope to move on to a bigger paper. We all had hopes of the New York Times. Teaching lures many journalists because of the regular hours and holidays.

I digress.

After 30 years at one newspaper, I categorically can say I have seen at least a hundred Walter Winchells and Anna Quindlens come through Amarillo. I usually can bring up a face with a name.

Journalists, at least the ones I know, read and read and read. We fill our mind's file system with lots of useless facts that are well-organized because words help us relay information. Words -- the more you use them, the more refined your writing.

Words have their own Dewey Decimal System in my head. Of course, the drawer for a particular file occasionally sticks, and there are so many, sometimes it takes awhile to access them back there in the far reaches.

Thus ends another episode in my exciting life. On to the dishes now.

Later, Dude.

Saturday, December 11, 2010

See the USA

Back in the day, Connie and I were Lucy and Ethel. There were times we got ourselves into hot water only to escape by the skin of our teeth. Connie drove a faded red tiny car. I think it was British made. I drove a 1951 Chevy like the one below, mine was faded brown.


We could drive the drag for an afternoon on 25 cents worth of gasoline, though there were times we had to push "Old Brown" because we ran out of gas.

We were not allowed to drive in the big city of Amarillo, so one day we took off for Amarillo in her little red car. We decided to go the back route so we would not run into "the parents." We made it more than halfway before we ran into her dad heading the other way. Oops.

We still have our Lucy and Ethel moments.

PCP Doc decided to replace the wick. I get to remove it myself Sunday. He prescribed some antibiotics to make sure the wound does not get infected.

I got lots done yesterday. Couch here I come.

Later, Dude.

Friday, December 10, 2010

Getting it

The other day someone close to me asked if I would feel well enough to come to Christmas festivities. I told the truth. I do not know. If I could plan the days I did not feel well enough to get out of bed, I might. Between the PH, which seems better with the new med, and the depression, I never know what the day will bring. I sent the someone a copy of the Spoon Theory awhile back. Still the someone does not get it.

Another someone told me in not so many words to get over it. "I get depressed sometimes too, but I just tell myself to move on." Oh, if it were that simple. Even Doc agrees I am not a complainer. Perhaps if I started whining over every little thing, people would understand, though I doubt it. Then they would just think I am a whiner.

I go see Doc PCP this morning to get the wick removed from the hematoma site. The bandage actually fell off this morning. The tape was almost like ribbon, very wide and seems to quit sticking in stages.

Connie and I also will head for the dollar store, grocery store, to get car tags for my car, and other errands. Somewhere in there we will go eat lunch to celebrate her birthday, which was in November. A busy day, which means tomorrow I more than likely will take a couch day.

Later, Dude.

Thursday, December 9, 2010

Taking care of business

Pardon me while I step on my soapbox.

I listened to a woman tell me about her life's woes. Though I do not know her well, she talked on and on about how she would rip so-and-so's head off, how she disowned part of her family.

I now see the result of parents who had to have a child or two to go along with their Lexus and private club membership. Go, go, go. Ever on the way up. More, more, more. Those children were deprived of what they really needed -- direction, limits, a true picture of the world.

Lump those kids in with the ones who parent themselves because of single moms who struggle to make ends meet or simply use the children to get money for themselves. Streetwise at 7.

You end up with adults who are emotional infants and expect to have life handed to them or adults who think life has no value -- kill or be killed.

*stepping down*

Each day I tell myself I will get some work done in the apartment. Each day I crawl back into bed. Meanwhile the cats have made a total mess of the place, well, their share anyhow.

Enough procrastination. On to the dirty dishes.

Later, Dude.

Wednesday, December 8, 2010

A wonderful life

My body and I seem to have this problem lately. I go about my everyday living like I have done the past 50 years or so but somehow the body gets in the way now.

Yesterday I bent down to pick up the cat food dish and hit my temple on the pantry doorknob. I wash dishes, but as I put them away, I see food I missed. Every little nick from Pogo's claws becomes a blood blister. Red splotches form misshapened patterns on both arms. Even fingers are not exempt. If I scratch an itch, a mark shows where. If I dry myself too vigorously after a shower, I get a mark. Thank goodness I am not on coumadin, just low dose aspirin.

I pick up bruises like bargains at a flea market. I get bruises in my sleep. (Must have been some dream!)

Slamming the car door on my shin has got to be the epitome of klutz. Yesterday I paid for the awkwardness. Doc PCP basically poked a hole in the golf ball size bump and then scraped out the blood clots. He squeezed and pinched. After he removed the clots, he placed a wick (yes, it looked like a lantern wick only not as broad) into the wound, put a gauze patch over that and told me to come back Friday.

PH adds its own spice to my life. The joy of downing nine pills every morning. My very own microprocessor ultrasonic nebulizer to puff on four times a day. The untitled symphony performed by my stomach after treatments. Getting to know the man in brown on a first-name basis. Does going from freezing to sweating to freezing count as exercise? How about lugging an o2 tank?

All in all, it's good.

Later, Dude.

Tuesday, December 7, 2010

Mundane musings

In the spirit of better late than never, I am paying a visit to my PCP this morning. I think the last time I saw him was about four years ago. I slammed the car door on my shin at least three weeks ago and, although most of my leg is flesh colored again, I still sport a rather large knot in a royal purple hue. Surely doc PCP can tell me what to do. I am wondering if the bulge needs lancing.

As for the Tyvaso, I am on eight puffs, four times a day. I am having some stomach woes, so I still need to get food vs medicine synced. At times I have pains where the ribs meet in front. Other times I have heartburn in my throat. Lying down a bit takes care of the former and a few swigs of Mylanta cools the latter.

I got a wonderful surprise package Friday -- a soft and snuggley wrap with pockets. The boys enjoyed a new box. Win, win for everyone.

My hands and feet feel much like Popsicles, so yesterday I found the king size, automatically shuts off after two hours heating pad. The heating pad sits on top of the pillow I use to elevate my legs. I lie on my hands until they warm up. I use a blanket over this and grab a kitty or two as well. My coffee serves a dual purpose. Sure the caffeine gets me going but the mug makes an excellent hand warmer.

Bored. *sigh*

Later.

Monday, December 6, 2010

Contemplate this

Some truisms:
  1. Fanatics, no matter what the cause, are dangerous.
  2. Technology just means rumors travel faster and wider.
  3. Some people allow others to do their thinking. What do you think?
  4. Eventually you have to own up.


The Naming Of Cats
T.S. Eliot


The Naming of Cats is a difficult matter,
It isn't just one of your holiday games;
You may think at first I'm as mad as a hatter
When I tell you, a cat must have THREE DIFFERENT NAMES.
First of all, there's the name that the family use daily,
Such as Peter, Augustus, Alonzo or James,
Such as Victor or Jonathan, George or Bill Bailey--
All of them sensible everyday names.
There are fancier names if you think they sound sweeter,
Some for the gentlemen, some for the dames:
Such as Plato, Admetus, Electra, Demeter--
But all of them sensible everyday names.
But I tell you, a cat needs a name that's particular,
A name that's peculiar, and more dignified,
Else how can he keep up his tail perpendicular,
Or spread out his whiskers, or cherish his pride?
Of names of this kind, I can give you a quorum,
Such as Munkustrap, Quaxo, or Coricopat,
Such as Bombalurina, or else Jellylorum-
Names that never belong to more than one cat.
But above and beyond there's still one name left over,
And that is the name that you never will guess;
The name that no human research can discover--
But THE CAT HIMSELF KNOWS, and will never confess.
When you notice a cat in profound meditation,
The reason, I tell you, is always the same:
His mind is engaged in a rapt contemplation
Of the thought, of the thought, of the thought of his name:
His ineffable effable
Effanineffable
Deep and inscrutable singular Name.

Later, Dude.

Sunday, December 5, 2010

What a year

The past year has been one of learning and growing. Many days were painful. Many days came and went without making a mark. I met grief.

Grief and I had a nodding acquaintance before. I lost my grandparents, several aunts, cousins and my dad. I wasted the chance for learning and growing with the grandparents. I wanted nothing to do with death and funerals, so I did not go.

The death of my dad hit hard. He died suddenly. I went into survival mode and then pushed away emotions. I did not allow myself to mourn.

Through the years I have lost colleagues. This past year I lost one whom I had known for almost 30 years. For him, I was able to sit and hold his hand, though he was not conscious. I touched death and did not flinch. I wanted to be strong for him, I wanted to help.

I began this blog and vowed to write every day as a tribute to you. (Except for the days I was hospitalized, I accomplished that goal.) I used writing as a safety valve, releasing pressure when I thought I would go insane.

Without the help of friends (some help totally unexpected but oh so welcome), I am not sure how I would have made it through the year.

Connie calls almost every day. She makes sure I get out. Others offered words of encouragement, some of which came at just the right time.

A couple of new friends mourn along with me and opened up their hearts. We pull each other along the road to healing. I am thankful.

My reactions are honest though maybe not logical. Some chose to ignore me, some chose to condemn me. No matter.

I miss you no less, but sorrow loosens its vice-like grip on me. I begin to breathe once again.

Thanks, Dude.

Later.

Saturday, December 4, 2010

Later

Early tomorrow, just after midnight in fact, it will be a year since you died.

I fulfilled a couple of promises I made to you, both before and after you died. I owe you so much,  I wish I could have done more.

I am not as frantic or whacky as I was a year ago. I have had time to adjust to the notion that you will never again pop up on my IM.

Because of my relationship with you, I now have a couple of good friends I would never have had.

Thanks, Dude.

Friday, December 3, 2010

What can I say?

I am such a selfish creature. I forget that I am not the only one. In the great scheme of things, I rank near the bottom. An asterisk at the very most.

In the meantime, I stick my nose into other lives like I deserve to be there. I insert my opinion like only I know this or that.

I am sorry. Wishing will not make it so.

Later, Dude.

Thursday, December 2, 2010

Time keeps on slippin'

I wish I could detail the busy life I lead since starting the Tyvaso. The medicine helps tremendously. Unfortunately, my head does not cooperate. I have the urge to curl up and hide. Put my mind in neutral and glide on through the new year. So I waste the newfound energy. The few times I have ventured out, within an hour or so, I am pining for the apartment.

Time steals you away. What we shared begins to fade and I know soon, much sooner than I would like, the memories will go into a box in the closet of my mind. Occasionally I will bring them out and lovingly caress each one.

How hard would it have been for the little actress to hang with you a couple more weeks? What a shame the "expert" did not practice what she preaches.

Later, Dude.

Wednesday, December 1, 2010

Taking flight

“Happiness is like a butterfly: the more you chase it, the more it will elude you, but if you turn your attention to other things, it will come and sit softly on your shoulder…” –  Henry David Thoreau

Tuesday, November 30, 2010

Reach out

http://www.youtube.com/watch?v=LPjUCZcFYLA

Sometimes I need a hug. A squeeze me tight, do not let me go hug. I get lots of virtual hugs, and I appreciate the thought behind them. Everyone needs human to human contact.

I am the reason I do not get many hugs. My family did not hug. So I project aloof, "do not touch," when in reality I am starving.

Christmas depresses me. It has for many years. Last Christmas was one of the worst. I went nowhere. I isolated myself.

Later.

Monday, November 29, 2010

Strength in numbers

My life hangs by a thread in so many ways. Before you panic, read on.
  • I have a soon to be 23-year-old car that works like a Timex.
  • I have insurance that will continue until I am eligible for Medicare.
  • I have more money going out than coming in, but have some savings to fill in.
  • I have medicines which help me remain alive, but I am working my way through the list pretty quickly. 
  • I have memories that cheer me up and memories that make me sad.
  • I have the love of two cats.
Weave the threads together for a picture of me.

Later, Dude.

Sunday, November 28, 2010

Crafted food

The day started roughly. *grumble, grumble*

I made myself dress. I gathered up the trash, cleaned the cat box one last time and loaded the trash, purse and o2 into the car. A quick stop for the trash and to pick up the mail and I headed for the smaller grocery a couple of neighborhoods away. I shop there frequently and everyone knows me.

My mission today, besides the cat food (grocery store prices are cheaper than pet store), was to find something different to eat. I am so bored with my usual fare.

Observation: if you want to sell your product, make sure "artisan" appears somewhere on the packaging. Does not artisan evoke thoughts of craftsmanship, value, beauty? Somehow "artisan" makes what you eat sound more refined, upper crust. Much better than sandwich with Parmesan cheese. Just think, artisan bread covered with shredded artisan cheese and a tangy tomato sauce.

I treated myself to some cookies from a company that names it cookies after geographic areas. Though expensive, these cookies are the next best thing to those you make at home. I have not had any in several months. I noticed right away the cookies are smaller than they were and the texture different. *sigh*

Later.

Sinking

For the past hour or so, I have thought about getting out this morning. I am on the brink of another bout with bronchitis. I woke up SOB and my sats are way, way low. I would wait another day except we are nearing crisis in the kitchen.

I feel myself sliding into another blue funk, too. I lack energy and motivation. The combination is not healthy no matter how you look at it.

Later, Dude.

Saturday, November 27, 2010

Cries in the night

Poor Pogo. I have none of his canned cat food to offer. I ran out yesterday, so today he has had to make do with ham lunch meat, leftover turkey and even a bit or two of dressing. Of course he acts like a martyr because he cannot have his regular food. I will make an effort to get out tomorrow and get the poor starving kitty some food. I am sure Satchmo would share his dry food. Nope, not good enough for his highness. (No kitty was harmed in the telling of this tale, though it was tempting.)

I slept most of the day and I easily could go back to bed.

When did I become a crazy old lady?

Later, Dude.

Friday, November 26, 2010

I'll have a blue Christmas

Now the rush for Christmas begins (she says as she reaches over the wrapping paper display for Halloween candy). The frenzy builds until the crescendo at midnight Thanksgiving.

I never have been a shopper. I do not like trying on clothes in those tiny rooms with the feeling of my every move being watched. I dislike going store to store only to return to the first one to buy. Everything begins to look like everything else and I get tired and frustrated.

I dislike the holidays because of the pressure to find the perfect gift. I am a procrastinator. Then I feel guilty. I want to hide until the new year and pretend everything turned out OK. Those folks who shop all year long and are done by Thanksgiving put me to shame, but do not spur me to action.

"But you offer your help all the time." "No, you help me."

I cannot do this, sorry.

Later, Dude.

Thursday, November 25, 2010

Written in the stars

OK. Could not pry a word out of me this morning. Looking like the afternoon might follow suit.

The temperature fell to 17 early this morning. Thank goodness the wind chose to take a holiday. Just in the past couple of days, the leaves went from shade to a yard blanket. Some of the red leafed trees still retain their glory, but a semi serious wind will finish the job.

The sun's rays seem to struggle in the evening knowing darkness waits nearby. Every day the scene plays out with darkness gaining ground.

Picture book scenes present the fantasy side of winter. The season belongs to young folks with their agility and rebound ability.

Cold weather prompts layers of clothing. The thinner your skin, the more layers you don until you feel like the Michelin man or a Weebles. Because of the medicines I take, the next minute I am throwing off layers faster than a corn shucker. No wonder respiratory woes are close companions.

As the days grow shorter and shorter, the anniversary of your death nears. I am sad still. I know you probably think I am wasting energy, but I have my own map to follow on this mourning route. I will get there. It is not a race and no one wins. Somewhere in the cosmos we will find each other again, Dude.

Later.

Wednesday, November 24, 2010

Time out

Happy Thanksgiving Eve!

I remember you saying you do not go on witch hunts because you once were the witch.

Missing you, Dude.

Later.


Tuesday, November 23, 2010

Chameleon

An ugly spectre seems to vibrate through the CF community. Or I should say one house of it?

You told me all about your nightmare, but somehow my mind did not process the enormity of the situation until now.

What kind of ogre pretends to have a disease so they can feed on the comradery?

Once bitten, twice shy applies. I can understand why suspicions lurk in every corner. Why the community questions everything, even after years. Perhaps the nature of the disease itself keeps a CFer's radar pinging constantly.

What makes the CF community so vulnerable? What causes a tormented soul to carry a lie to extremes?

Dude, missing you.

Later.

Monday, November 22, 2010

Last year on this day ...

This morning I read over the PM between us on this date last year. Sometimes I do that just to see what we talked about.
I used to read over the PMs and grow sad, so I stopped. Then sometimes I would search for specifics to see if I remembered accurately.

The perspective on our time changes over time. I am pretty proud of the things I said. I see your life from your end more clearly too. Through a couple of people whom you were close to, I learn even more about you. I am so blessed to find them, or rather I am filled with gratitude they allowed me into their lives.

The anger against a specific person subsides some. I hope this continues so I can kick her out of my life for good.

You always will have a spot with me, Dude.

Later.

Sunday, November 21, 2010

I do a Sally Field

I look for approval from everyone I meet.

Not everyone will like me. I need to learn to quit fixating on why and just walk away. Case in point: I ran into a former colleague on the pasta aisle in Wal-Mart yesterday. He wasted no time turning his cart around and heading the other way. Yes, he did see me and the recognition was there. I wasted time wondering what I had done to cause that reaction.

Then I got my mail. A card made me realize I am worth knowing. Some people do like me. I read the card more than once relishing each word. Slowly, however, doubt began to nudge out the joy. Does the card sender feel obligated in some way to me? Does the card represent a formal thank-you, all proper and nothing more?

Boy, what a mess, Dude.

Later.

Saturday, November 20, 2010

Blowin'

After the winds of life blow away the chaff, true friends remain. When you need someone, they materialize as if by magic. These guys wait patiently on the periphery for your call. Helping others infuses the givers with a nectar which cannot be bought. By rejecting the help of others, you deny them the rewards of giving. We need the help of others and they need us to feed their souls.

John Donne
Meditation 17
Devotions upon Emergent Occasions

"No man is an island, entire of itself; every man is a piece of the continent, a part of the main. If a clod be washed away by the sea, Europe is the less, as well as if a promontory were, as well as if a manor of thy friend's or of thine own were. Any man's death diminishes me, because I am involved in mankind; and therefore never send to know for whom the bell tolls; it tolls for thee..."

http://www.youtube.com/watch?v=TMbREoeavAY

Sending my love wherever you are, Dude.

Later.

Friday, November 19, 2010

Sail away

When you get a wall post from a newly added "friend" on FB which says, "Howdie ... ok so, I just got a new piercing somewhere but I cant post pics on here. come view my profile :-) ...." red flags start flapping right away. I noticed most of the folks that got "friended" have PH or CF. I admit I friended her at first, then after that post, I dropped her -- the first person I ever "unfriended."

One of my photographer friends got a similar post a few months ago. I checked out the link and got an eyeful of a private part from 18 angles. This recent incident was similar enough to make me run the other way as fast as I could. I considered reporting this person, but none of the suggested reasons for reporting a person applied.

Am I shocked? No, not really. I am to a certain extent trusting and gullible, but I am also world weary.

What people can do to others boggles my mind. I think the American dream of the 1950s became the American nightmare of today. Values and priorities changed and now we pay the price.

Not everyone lost their rudders, but they find the waters treacherous as they navigate life. The stormy seas threaten to send them aground. The beacon of lighthouses along the route keeps them steadfast. A safe port lies ahead.

I do not know what to think anymore, Dude.

Later.

Thursday, November 18, 2010

What I think

Sometimes the silence deafens, sometimes I welcome it. I am a mass of contradictions.

Yesterday Congress opened its doors to representatives of special interests. In theory the day shows our government at work. In practice, yeah, right. A senator or members of his staff talk to 20 or 30 people about various projects, diseases or whatever. In the meantime, the elected officials fly down the halls acting senatorish to cast critical votes.

I have no idea what might catch the attention of a lawmaker, but I imagine unless you are a Boomer Esiason, your plea bounces off like a rubber bullet. Especially on days when you draw requests like a water buffalo draws gnats.

I did a lot of housework yesterday. Today maybe more? I am well pleased with the Tyvaso so far.

Miss you, Dude.

Later.

Wednesday, November 17, 2010

The bore in chore

Momo sits atop the Tyvaso box surveying his world. I wonder what he thinks. From my angle, he looks like he plans an attack, just daring anything new to creap into his domain. His head moves side to side. Occasionally I can see his nose moving, drawing in the aromas near him. Once the environment passes the test, he allows Morpheus to take over.

Morpheus seems to rule my life as well. Now that I finally begin to have some oomph, I have no motivation. Not doing anything quickly gains habit status. Sadly, washing the dishes becomes a triumph in the game of daily chores. The combination of dishes and any other chore rates a bronze medal. Seldom do I earn the gold.

Today the bathroom calls not too subtly.

Miss you, Dude.

Later.

Tuesday, November 16, 2010

Meet my pal, PH

Everyone who reads my blog knows I have a rare disease: pulmonary hypertension. PH kills a 100 percent. But so does cystic fibrosis or ALS.

Since diagnosis, PH defines me, though I fight like crazy not to allow that. But let's face it, some days I win, some days PH wins. I may have a big outing planned and have to cancel because I do not have the energy to get up. Other days I hit three or four stores or clean my apartment.

PH medicines help, but they extract a large physical payment. When you take on PH, you often take on a load of pain or other side effects that keep reminding you of your illness. With PH you learn to cherish the small victories.

Even though you would not wish this disease on anyone, you find meaning and strength through others like you. An exclusive social club no one wants to join.

Today, National PH Blogging Day or some such, remember those who are now breathing free -- each of them a hero; each of them missed.

Later, Dude.

Monday, November 15, 2010

That's it

Today I increase the Tyvaso to eight breaths, four times a day. So far, so good.

Nothing more, Dude.
Later.

Sunday, November 14, 2010

Not today

This don't wanna business keeps hitting me. For one thing, I am cold. Lying on the couch with a blanket and a kitty or two appeals more than vacuuming. I have big plans for lunch today. Fried chicken livers, mashed potatoes and gravy. We shall see if that happens.

Yesterday I bought the fixin's for stew and beans and cornbread. Since when did stew meat become prime rib? I paid $7 for a smallish package. Used to be stew meat could be had for a couple of dollars.

Later, Dude.

Saturday, November 13, 2010

Snow, snow


As you can see from this photo by former colleague Michael Norris, the brief snow was not kind. Since most of the trees had their leaves, the snow weighed down the branches to the breaking point. And break the branches did all across the city. People heading to work found themselves in a life-size game of dodge the object. The first snow of the season also brought a bunch of accidents. Apparently memories are pretty short between one winter and the next.

The weather boys said we got more than an inch of rain during the night and then 3 inches of snow. By 5 p.m. the sun was shining and the great melt began.

This little fit by Mother Nature could serve as a harbinger. Hope not.

Possible line infections have sent a couple of my PHriends to the hospital. I am thankful I do not yet have to do continuous IV medicines.

Later, Dude.




Friday, November 12, 2010

Raindrops

Maybe because I slept all week, my mind refuses to give up any thoughts worth putting down.

The rain came yesterday evening. Some thunder and hail, but mostly rain. All through the night the intensity varied. Even now a cloud bursts and then fades only to be replaced by another. Now snows adds to the mix.

Connie hurt enough yesterday to send her to the couch with a blanket. We agreed to put off errands until today.

The hunker down mentality already kicks in. The forecast for next week offers highs in the 40s. Compared to the near 80s lately, that will seem like winter. So beans and cornbread or stew sounds great, which means a trip to the grocery.

One day next week I will have to pay a visit to the vampire. No biggie except I have to dress and get out.

I miss you, Dude.

Later.

Thursday, November 11, 2010

Another reason PH sucks

Most PHers and caregivers are aware of the physical aspects of the disease. Many also know the emotional side.

When I got my diagnosis, I worked full time as a copy editor. My job entailed sitting at a desk. The work was 98 percent mental. The editorial department resides on the third floor. When the elevator quit working (which it seemed to do frequently, especially during cold weather) I had the nearest person take me to the third floor via the freight elevator. A time or two neither elevator was operational. So, no work that day. I kept going and seldom let the symptoms slow me down.

Then I was a part of a layoff. I found myself without anything to do. I began to doubt my worth.

At first, former colleagues would e-mail or phone. Gradually that ceased. Only a few stayed in touch.

I made friends on the Internet. I became close to several. Then those friends began to die. I found my new world disintegrating. Physically I began to deterioriate, though at first I did not notice.

Finally the combination of physical and mental corrosion sent me careening into an abyss. Overwhelming sadness enveloped me. I curled up on the couch and pulled the blanket over my head for months.

Several PHriends and friends sent out lifelines. Their understanding and love kept me afloat.

Now I work my way out of the mental muck. Some days I slip and fall. Others I almost reach the top.

Thanks PHriends and friends.

Later, Dude.

Wednesday, November 10, 2010

Another day in Cindyville

I woke up grouchy today. I griped and moaned (to myself) about harvesting for a friend on FT. The whole time I told myself individualists make the world interesting. My computer ran its diagnostics about this time, which made the game that much harder. No joy there.

Thus begins day two of the Tyvaso increase. I avoided most of yesterday by sleeping on and off for 24 hours. When I was not sleeping or doing treatments I was scarfing practically anything I could get my mouth around.

Somehow during all this time, my apartment fell apart again. The man in brown delivered my meds on Monday. Two padded envelopes and a two-cat size box with my Tyvaso. Momo has a plastic fetish. He licks trashcans, munches on baggies and shreds padded envelopes by standing on them and pulling mouthful-size hunks off. So bits of envelope litter the living room.

The sink sits with cold dishwater and dirty dishes. I started them yesterday morning and never got around to doing them.

My feelings sit precariously on my sleeve right now. Nothing unusual there. Seems to happen often. I need to learn to speak up to those who do not even know they are part of my drama. Either that or move on.

Not a good day in Cindyville.

Later, Dude.

Tuesday, November 9, 2010

The Tyvaso bump

My pulmonary hypertension doc's nurse called me yesterday. She said Doc wants me to increase my Tyvaso to seven puffs, four times a day this week and eight puffs, four times a day next week.
"And the next week?" I asked.

"He didn't say. He wants to take it slow," she said. "You will call us right away if there are problems?"

"Of course I will call you right away," I said (both she and I knowing I did not call the last time).
So what did I do? I had one treatment left for yesterday. So I did nine breaths.

I did not die nor was I up all night with symptoms. I did not start wheezing nor did I have a coughing fit.

But one word fits what I did: foolish.

I am better educated than most regular medical patients about my disease. I imagine I am a handful for Doc. To pretend I am just a patient and ignorant (and to be perfectly clear: no, not all patients are ignorant) is not part of my nature. The wisdom of doctors not treating themselves should apply here, too.

I vow to follow Doc's plan with my mouth firmly shut. It is a matter of life and death.

Later, Dude.

Monday, November 8, 2010

NaCl + PH

PHers often follow a low salt diet because swelling and fluid retention plague us. Sometimes though the craving for salt takes over. I have eaten a medium size bag of potato chips in three days. Then I had to double up on my diuretics.

Yesterday I wanted fried chicken. I did not want to mess up my clean kitchen with the grease and flour, so I opted for KFC. I bought six pieces to sate this craving. Pogo and I managed to down two pieces. What a waste of money. The chicken had more salt than the chips.

Another issue PH offers us: paperwork and the opportunity to learn how to navigate the system.

Today I get to call the insurance company and find out what this conversion policy notice means to me. The notice said coverage ends April 30. At some point I will be eligible for Medicare. I really dread going through the processes I must to have some sort of medical coverage. Ugh.

I also have to call ValMed. I think the company tries to bill me for a drug I paid for on the day I received it. Another hassle, but I have check number and date it cleared the bank, etc.

I really just want to go back to bed.

Later, Dude.

Sunday, November 7, 2010

What extra hour?

Cats' internal clocks fail to recognize "spring forward, fall back." Pogo started poking me at the usual time (3 a.m. Saturday time, 2 a.m. Sunday time). This new time-old time transition will take about a week.

The apartment looks much better after I spent most of yesterday tidying up. I washed a stack of dishes, swept and mopped the kitchen floor, swept and mopped the bathroom floor, cleaned the vanity area, went through a stack of papers and shredded or filed, took the trash to the dumpster (including the three kitty boxes. New ones on the way.), and cooked supper.

When the energy hits I gotta act. I spent all week recharging only to burn it up yesterday. I need to find an extra charge today so I can vacuum and dust. Then my world balances again. However, my battery seems dead right now.

When I was 4, we lived in campus housing. Ten tiny adobe-style houses, termed "the pueblos," were home to young college professors and their families. Almost transitional housing. Next door to us was a single woman and her mother. Loula Grace Erdman fascinated me for some reason. I loved to talk and she would speak to me. My dad explained that she was a writer and needed quiet time. I have been told that I went to her house, knocked on her door and asked her if she had any cake pans. When she said no, I replied then we would have to make a pie.

Read about her below.

http://www.tshaonline.org/handbook/online/articles/fer05

Well folks, that about wraps up another exciting episode of It's OK, it's just me. Remember, PH sucks.

Later, Dude.

Saturday, November 6, 2010

Ahhhh Oooooo

Boopie and the youngin' invited another youngin' to lunch with us yesterday. This youngin' seems like a nice young woman.

We ate at Coyote Bluff, a local hole in the wall known for its burgers. When we arrived just before 11, a line of about 10 or so people stood in the unpaved parking lot.  The chill wind made us all realize winter knocks. I had never eaten there though the joint has drawn anxious eaters for years.

Coyote Bluff crams 12 to 14 tables into a space about the size of my apartment. The ceiling, dingy with years of grilled burgers and lunchtime talk, rises high over our heads. The menus, printed on yellow computer paper, have been touched by thousands of hands.

The place draws hungry working men, businessmen, a disc jockey or two, college students. A Hispanic man and his three little girls began the second line while we were eating.

The burgers could fill a hungry teenager. The fries hot and salty. Huge amounts of add-ons make these burgers hard to eat. Oh no one fails to find a way to dig in, believe me.

After a bit of talk and a snafu over the check, we spilled back into the parking lot. A quick hug and one of the youngin's headed to get a free flashlight and another to take a burger to the spouse.

A good time was had by all. (Journalistic inside joke.)

I miss ya, Dude.

Later.

Friday, November 5, 2010

So true


PH positives

OK, so today I list the positives about PH:
  • I get to see a really handsome doctor every three months.
  • I get to have prime parking spots.
  • I get to write.
  • I get to spend more time with my cats.
  • I get to do what I want, when I want. (If I feel like it.)
  • I get to meet interesting and caring PHriends through the Internet.
  • I get to educate myself about my disease and several others as well.
  • I get to learn about myself and my weaknesses.
  • I get to feel empathy from the other side.
Later Dude.

Thursday, November 4, 2010

What I get to do

In honor of PH awareness month, here's what PH means to me.
  • I get to see a really handsome doctor every three months.
  • I get to visit a vampire every month.
  • I get to take nine pills in the morning.
  • I get to wear oxygen all day every day.
  • I get to wonder if today I will pass out in the grocery store again.
  • I get to have chauffeur service. (see above).
  • I get to lie on the couch all day because I have no energy to do anything.
  • I get to run to the potty every 10 minutes because the diuretics finally kicked in.
  • I get to lose weight easily because sometimes the medicine makes me nauseous.
  • I get to give my trash a ride because I cannot walk that far nor lift that much weight.
  • I get to sit at home while my friends have fun at the corn maze.
  • I get to test my pain endurance.
  • I get to learn about mental health.
  • I get to experience a hospital's daily rhythm.
  • I get to feel empathy with those in poverty.
Tomorrow the positives.

Later Dude.

Wednesday, November 3, 2010

More failure

Yesterday presented a test. I pretty much failed.

Connie offered to take me to do errands. The closer the time neared to go, the more I dreaded leaving my apartment. I did not want to dress. I did not want to period. I came close to a panic attack. I called her and canceled the excursion.

I get like that, almost to the point of nonfunction. My life seems a conundrum. Now Connie tells me things I say that I cannot remember. I wonder why I am blocking so much in my mind? I ask her and she offers excuses: the medicines; the weather; the stress of losing friends; the disease. I wonder if she says these things to shield me, or is telling me something I simply refuse to hear, or none of the above.

One of Paul's friends died last night. His family decided to take him off the vent. RIP Gess Brown, you were too young.

Dude, you will rest in my heart until I die.

Later.

Tuesday, November 2, 2010

My PH story

A CFer lies in ICU on a vent. A 21-year-old with PH dies after a heart-lung transplant, which she had longed for. These stories fill my days.

I truly did not understand what people with rare chronic diseases face until I had my own run-in with Pulmonary Hypertension. Fortunately for me, my doctors had a diagnosis pretty early in the process. The docs put me on bosentan, one of the first oral PH meds. My symptoms abated after awhile, and I continued to work and go about my life. Then came more symptoms and another PH medicine: sildenafil (Viagra). Since my pal edema came to visit more frequently, the doc added two diuretics to the mix.

The newspaper where I worked for more than 30 years laid me off. A close friend who had CF died. I fell into a vat of depression. Two more medicines added to the cocktail.

Lung issues sent me to the hospital twice in the past four years. Both times I waited almost too long to go. The denial factor gets a person in trouble fast.

PH is high blood pressure in arteries of the lungs that can lead to heart failure. PH has nothing to do with systemic blood pressure. (You know, the cuff on the arm blood pressure.)

The past five years my pressures have been moderate. Recently they increased to the severe range. I started having more symptoms, so the doc added a relatively new medicine, inhaled treprostinil. I noticed an improvement in my energy level right away. This medicine also brought with it a few unpleasant pals. GI tract issues, muscle aches and pains, headaches. Fortunately most of these guys left the party early.

Doctors use a couple of tools to follow my disease. The echocardiogram and the right heart catheter. The echo estimates pressures, the heart cath gives the actual pressures.

Oh yes, my medicines cost thousands of dollars a month. Fortunately insurance pays on all of them. Unfortunately, the co-pays add up. I pay more for drugs than I do for rent.

I know dozens of diseases scream for your donations like beggers standing next to a bread factory. November is PH awareness month. 'nuff said.

Monday, November 1, 2010

Caterwauling

Pogo pings off the walls this morning. Post-Halloween hilarity perhaps. He streaks across the room, lands on the rug in front of the door and slides up to the wall like a boy in snow boots glides across the ice. And just like a boy, he has to tell the world about the fun at the top of his voice.

Satchmo sits on the sidelines and watches in disbelief. Is this cat the same one I live with? Did the doppelganger take over?

I need to do some errands today but I do not want to get out. I always can clean the kitchen. I spent major time yesterday cleaning the bathroom. This morning, thanks to a couple of cats I know, it needs sweeping.

My aching finger joints tell me winter soon can barrel down like a car on a dragstrip. My least favorite season. Oh, winter boasts beauty, but carries cruelty too.

Count your blessings, Cindy.

Dude is one.

Later.

Sunday, October 31, 2010

Over a barrel

Apparently the folks who program my scale for the heart failure thing think last night was "fall back" time. Not the best way to start my day.

I slept from 3 to 7 yesterday, took my meds and went back to bed. I guess I needed some rest, though I did nothing to warrant a long nap. In the aches and pains category, the joints in my fingers hurt frequently. They joined the complaint department before the Tyvaso. Must be age and all that typing throughout my career.

Accredo added another couple of questions to the drill when you reorder. The company must fear lawsuits as I am sure most drug companies do. However, PHers have little choice. Only a couple of companies make PH meds.

I agree with the call for a watchdog group for the drug companies, but I do not have much faith that such an organization would not align itself with the very company it is charged to watch. When business got big, the consumer got lost. I fear, like Pandora learned, you cannot put it back in the box.

The boys crashed after eating for the third time in 2.5 hours. Ah the life.

I still miss someone, Dude.

Later.

Friday, October 29, 2010

Power of the people

Though today people cast their votes in various races, the headline of this blog post has nothing to do with elections.

A stalwart friend has stepped forward to support Sylvia after her transplant. If the Pulmonary Hypertension Association had a fund for things like air travel, more of us would go to support our fellow PHers when they need help. I know I would if I could. I do not have a family to tie me down or keep me from helping for a week to give caregivers a break.

Many of you who knew B. knew he died because he had inadequate support, so never could quality for a transplant. He was young.

The PHA does offer lots of needed services, I just think an additional one could save lives.

We the PHers and those who are caregivers should let the PHA know that a fund to help us help ourselves is important.

Later.

Mind games

Thursday, October 28, 2010

Now serving envy

I am doing something for a week that many music lovers would dearly love to do. I have been selected to participate in the Arbitron Radio Ratings, the Nielsen of radio if you will.

One keeps a diary of the times and types of music shows, etc., one listens to. Also included are Internet music sites, i.e., Pandora. I wonder if reading about the shows on the radio counts? Hmm. I guess not. Too bad, I am friends with The Eagle on FB.

The Eagle plays my generation's music, 1960s-'80s.

http://www.youtube.com/watch?v=zqfFrCUrEbY

I sat in the car this morning while Connie did some errands. She went into a party story for a card. There are various types of stores along this strip mall. I sat and guessed which stores the people were going into. One of the stores fits a category I call foofy. The store sells hair do-dads, necklaces, sunglasses, etc. My guesses for that store were 100 percent accurate. Ha!

I noticed the Pathlight (PHA magazine) has gone slick. Previous issues were printed on heavy stock paper, but no color photos, etc. Now heavy stock slick color pages. I hope the next step is design. The cover of the magazine this time was awful. And I am sure some money must be coming in because the printing of this type of magazine does not come cheap. I realize you need to spend money to make money, and recognition serves a purpose. I am not sure being the next hip disease will contribute to its cure any faster.

I hope the organization does not forget the patient in the process of growing.

Sound familiar, Dude?

Later

Final hurdle

A friend posted a quote on her blog which essentially said live your life as if you would have to repeat every sigh, every word over and over. Kind of a "Groundhog Day." At the end of your life, would you be glad to do it all over again exactly the same? Something to ponder. Something I wish I knew earlier in my life. Too bad wisdom comes after the need of it is so great.

I have a friend who needs a lung transplant. She has jumped through all the hoops. Essentially the only problem delaying the life-giving surgery remains something I cannot do. She needs physical support for the six weeks or so after the operation. Too bad a group of sister PHers could not go and support. Or even better, PHA provide trained support for anyone who needs it.

After the final treatment yesterday, the muscles in my upper arms and the knee joints ached. I finally took two 500 mg Tylenol and my usual Xanax. Really, the sides I face are nothing. We shall see what happens after I increase for the final time.

With anonymous good deeds, you have to trust that the actions turned out well. You do not have the benefit of seeing the reactions.

Thanks for being my friend, Dude.
 
Later.

Wednesday, October 27, 2010

Glad you wuz born

Paul Justin Mooney
Oct. 27, 1965 -- Dec. 5, 2009

Tuesday, October 26, 2010

Just do it

A friend posted an innuendo about friendship on FB. No names, but I take on the guilt.

I never learned about conflict. Growing up I never heard an argument at home. I do not own a personality that thrives on persuasion and debate. I say OK just to end a confrontation. So the remark on FB makes me wonder what I have done. In my heart, I know I have done nothing.

Sometimes I dwell in the what if. Although fun, you can get into trouble by vacationing there too often. In reality, what if does not exist. Instead of what ifs, you have did thats. At the end, I hope your did thats leave you peaceful.

Connie heads to Lubbock to go to a rheumy. I sure hope he puts her on some regular pain-type meds. She wears herself out.

No celebrations, Dude.

Later.

Monday, October 25, 2010

Everywhere signs

The 62 mph wind followed this weekend by a freeze surely will mark the end of our only slightly colorful fall. Nature must not feel well because she dons gray today. Zane asked where the sun was, he could not find it anywhere. I told him the sun was napping. By the time Connie dropped me back at the house, Zane also was napping.

I sat in the car with Zane while Connie ran in to a couple of stores. All of us went into the grocery. I got some sale items and some veggies and grapes. I am going to make a concerted effort to eat more healthy. I feel better when I do.

The cats both snooze right now. I think I will join them.

Winter never has been a favorite of mine, Dude.

Later.

Sunday, October 24, 2010

The core

Today I honor the core of women who started me along the path of pulmonary hypertension education. Each of the 15 or so women offered encouragement and a listening ear. These are the women who welcomed me to chat.

In the PH world, death hangs around. Of my core group, death has claimed only one. Racheal. To lose just one in the five years I have been diagnosed beats the odds to hell. Oh, there have been many deaths over the years, just none of the core. TW and Mason, if women, would be in the core. They are gone.

There are others, of course. Way too many. But there are success stories as well. Cheryl got new lungs and thrives. New medicines help others.

The core represents an amalgam of personality, education, age and income. PH drew us together as only a rare, life-threatening disease can. A fraternity no one wants to join but oh so necessary. The core shares woes and successes, aches and side effects, children and grandchildren, parents and pets.

Each PH newbie gathers a core. Someone who reaches out and says, "I have been there. Let me tell you what I do."

So, thank you.

Later.

Saturday, October 23, 2010

I will sleep when I die

I sit staring at the screen, mesmerized by the blinking cursor. My imagination works overtime.

I think about you and your family. Funny, how with little information, I formed an image. Slowly details drift into the picture. Then my perceptions change and another scene takes its place.

I realize how special your friend was to you and now she extends that friendship to me. I begin to see a whole other life of yours. I feel special because I somehow have been admitted into the inner circle. (At least that is my perception.) I question the importance of this. Why does it matter so to me? Because in part, you still are here. I learn more about you by knowing the influences of your life.

Guess what? That only serves to endear. You were a blessing. Oh, you also had your moments of turmoil and angst, quite public ones at that. I can understand reaching out that way because isolation fosters ingenuity.

What would I do if I were given an extension of life but the reprieve came with strings: spending most of that time alone? How would I feel if someone took my trust, tore it into tiny bits and threw it back in my face? How would I react if someone tore my heart out by the roots?

One of these days, Dude.

Later.

Friday, October 22, 2010

A PH day

Yesterday I needed to retrieve my car from the shop, but I did not. I needed to wash dishes and got as far as filling the sink, adding the soap and the dishes. The dishes sit in a sink full of cold, yucky water. About all I did yesterday was eat and lie on the couch. Oh yes, and I am out of lasix and have been for a couple of days. I have gained 3 pounds the last two days. My bad.

Usually, for PHers, a change in medicine means a change (at least temporarily) in lifestyle. This new med keeps me close to a potty -- at least for an hour or so after doing a treatment. This may change after my body adjusts to the medicine, or it may not. A small window of time exists between the side effects subsiding and the next treatment. By the end of the day, the window closes as soon as I put down the neb.

Nutrition finds its way into my collection of woes. Nothing sounds good to me. I go stare at the food in the cabinets and refrigerator. Nope, nothing I want there. Eventually I get so hungry I grab a cookie or two or some crackers or chips. The very foods that make me feel worse. Side effects also exert themselves into eating. I cannot eat too soon after a treatment. I cannot eat too much before treatments. So a small window for eating as well.

Oh yes, and another problem. The sadness smacks me in the face again. I feel like I am covered in goo. I try to wipe the muck off but nothing happens.

Yesterday a few folks unknowingly threw me a lifeline. Thanks guys. I possess a long memory.

We have become such an electronic society. Soon, I fear, people will lose the joy of opening an envelope and reading a handwritten letter. The effort alone says "I care."

An email has no sense of touch to it. Somehow knowing that card was chosen by the sender, held in his hands, brings a closeness not realized with a text message or even an electronic "card." That the sender spent the time to write by hand says much about him and his opinion of you.

Dude, anniversaries.

Later.

Thursday, October 21, 2010

A Tennessee Ernie Ford type of day

Today I am reeling a bit. Not sure what this means yet.


My Tyvaso came with the handiest carrying case/purse. The neb, case for parts and cord fit neatly in the main compartment. The black Samsonite bag also has room for keys, money, pens, cell phone, etc. Though not Judith Leiber (see photos), the tote reminds me of those late-night TV commercials for the miracle purse, or some such. You know the one. The announcer touts the ability to carry a case of diet DP, etc., etc., as a model neatly stows the objects away.

My Wal-Mart $4 purse has about seen its last days. Maybe the time is right for a move into a new objects carrier. I will need to start toting my neb with me. I get real SOB if I go beyond the regularly scheduled treatment time, something I need to discuss with Doc.

Connie tells me she sees a great improvement since I started the Tyvaso. I cannot really tell. Some days the sides kick my butt. Mainly the muscle and joint aches. So far, Tylenol handles that pretty well, though I hate to take it because of the Tracleer and Revatio. Oh what a balancing act we live.

The big hoo-ha approaches faster than one might think. Plans are outlined. Go team! Dream big.

Well, Dude. Such as it is.

Later.

Wednesday, October 20, 2010

Nite

Is it bedtime yet? My body sure thinks so.

Tired, Dude.

Later.

Tuesday, October 19, 2010

Play ball!

I love day baseball. Growing up, there was no World Series at night. The game truly held the title of America's Pastime. I listened with about 27 other seventh-graders to a radio broadcast in Coach Glascock's science class. The class followed lunch. We sat at black lab tables with tiny sinks and gave the radio the attention we never gave Coach.

Today I get the chance to see day World Series baseball. The Rangers may be that team of destiny you always hear about. The cinderella story, David and Goliath. The series we listened to so raptly as kids also featured the Yankees.

Fans employ the claw and the antlers to rally the Rangers. Fun stuff, a team. No giant egos, just scrappy. Doing what baseball should do.

I feel as if I am in a void. I coast through the minimum daily requirements in neutral. 3 o'clock, time for meds. Noon, I must be hungry. The next day when I get up, I can offer no detailed account of my day. Washing dishes amounts to the only constructive chore I do.

I need to get out of this self-centered, wallow in the self-pity trough I am mired in. Some fight so hard to have life. I should learn to appreciate mine.

I miss you, Dude.

Later.

Monday, October 18, 2010

Just wanted to say

I discovered over the past couple of days the pain of your death lessens. Knowing this incites a whole menu of emotions. Shame for letting your memory fade. Hurt that I no longer hurt. Fear that I will forget. Lost.

I still am in awe that you could sear yourself on my heart so easily. I often wonder if you knew the charm you possessed. I know I was not the first drawn to your light.

I still smile when I think of you. That counts.

Later.

Autumn

* Disclaimer. These photos were not taken anywhere near my home.



Sunday, October 17, 2010

Old friends

http://www.youtube.com/watch?v=rHJNCSu3mI4&p=29B9BC1E79AC6367&playnext=1&index=15

Connie and I make good friends because she cannot sit still and I cannot get moving. Together we manage to get the job done.

Her body rebels with arthritis, mine with breathing woes. She pushes through her pain and treats taking her medicines like a religious rite.

She has problems getting numbers inverted and thinks computers are beyond her, yet she operates her remote for dish television. I use the computer all day long, but had to have help programming my remote.

Connie sees through people like they wear transparent clothes. I project goodness onto everyone; it takes me awhile to see the warts.

Connie would do anything for people. She saves her change to make a contribution to the local homeless shelter. She saves cans. With that money, she contributes to a church in the inner city which feeds children.

I enjoy brightening up people's days, preferably anonymously. I get more joy out of the experience than they do. Therefore am I selfish when I give to others? It would appear so.

Looks like I will make today a couch day.

Busy season, Dude.

Later.

Saturday, October 16, 2010

Sugar, sugar

The boys got an extra special treat tonight. I had a cup of caramel turtle cheesecake ice cream. The richness began to overwhelm me, so the boys got a goodly portion, especially for cats. Pogo ate his fill and then Satchmo approached the dish. He sniffed and then took a tentative lick. Neither ate much. Guess we all overdosed on sugar.

My soccer side sucks. What more can I say?

Sorry, Dude.

Later.

Friday, October 15, 2010

Just me again

The muscles in my arms and legs ached all day yesterday. I refrained from overloading on the Tylenol, but finally about 8:30 last night, I took a couple. I was freezing and having a hard time going to sleep. The Tylenol did the trick.

Today the ache returns along with the chills. I have a call in to Doc. I want to know how much Tylenol I could take in 24 hours without hurting my liver. I am hoping whatever causes me to feel this way will disappear over the weekend. I told the nurse I would call again Monday if the symptoms continue. She will check with Doc and let me know. I can take 650 mg three times a day. (She just called back.)

My last bloodwork showed I am vitamin D deficient, so now I have to take 50,000 IUs once a week for six weeks. My health reminds me of that arcade game in which you use a mallet to try to hit objects popping up. Take care of one ailment and another pops up.

I am sorry if what I write disturbs people or makes them not want to be around me. I am me, probably for the first time in a great while. You could interpret this blog as a cry for attention. That would be true. I feel so alone at times. Something all people go through. Physical affects mental as well. I am sad again.

Crazy, Dude.

Later.

Thursday, October 14, 2010

My life

When Connie calls me, which shes does almost daily, she asks if I have talked to anyone. I tell her no most days. That includes Internet chat. She asks if I know anything. I say no. I am sure she worries about me. I tell her not to, I am fine, but I do not think she believes me.

I hide more and more. I do not want to die but I apparently do not want to live either. So I exist.

I exist to feed Pogo 20 times a day. I exist to scoop poop and clumped pee. I exist to play FT on FB. I exist to take medicine on a schedule. I exist to lie on the couch and fall asleep. I exist to wear a gown all day and night. I exist to eat, although sometimes I do not find anything I want. I exist.

You were right, Dude.

Later.

Wednesday, October 13, 2010

Post toasties

I dillydally instead of writing. Today may turn into one of those days.

My arm aches some because of the flu shot. The pain will go away quickly compared to what the flu would do to my body. I have been exercising that arm by playing FT. Now the game becomes medicinal. Ha.

Some of my PH friends remember the exact date they were diagnosed and others recall the dates they received medicine and felt better. I do not. I remember gasping for air by the mailboxes at work. I also remember my feet were so swollen I could not get my tennis shoes on. I once took my mom to the doctor and I had to stop the car to catch my breath after maneuvering out of a tight parking spot.

Once Doc diagnosed me and I got medicine, I sort of forgot the PH for awhile. Oh, I read all sorts of web sites, but I was busy and felt better, so ... My block anything bad mind did just that. Finally, 10 days in the hospital with pneumonia convinced me how bad I was. Being pretty stupid as well, I went to my PCP and he was the admitting doctor. He almost killed me. He ranks up there as a good guy, but a PCP nonetheless.

A visit to Doc's office for a checkup always lifts me. He treats me as an equal although I know he gets a little irritated with me. He explains everything I ask. The whole staff exemplifies what a well-run office should be.

I am sorry dear friends if I continue to hide. The reasons are many, none of which fall on your shoulders. I am heartened by your notes and posts. I would not blame you at all if you stopped.

Dude, you know.

Later.

Tuesday, October 12, 2010

So far, so good

Doc said I sounded good and though objective, he said my pulmonary artery sounded better to him.

We talked about PH. He said PH nears the stage it no longer can be classified as an orphan disease. He said echoes are better and more drugs are available. He said we will discover that PH is not that rare. More docs are recognizing PH and there are now drugs to treat it so more cases will be reported.

He told me he will call when he thinks it is time to increase again. He also said now that I feel better, I need to exercise. *sigh* I got my monthly bloodwork drawn and a flu shot.

The receptionist recently had been in the hospital for a week with a blood clot in her lungs. The nurses noticed she was SOB and told Doc. Doc sent her to the hospital. Nice thing about working for a lung man.

If you have COPD and use o2, insurance companies require that you prove every time you go to the doc that your sats are low enough to continue using it. What? The companies think there are recreational o2 users abusing the insurance companies? Users bootleg tanks on the side? I wish someone would tell me the reasoning behind this one.

I cleaned out my desk drawer. Great you say? Ha. Now all the extraneous stuff sits atop the printer. One of these days ... one of these days ... one of these days.

Well, Dude, that is the way it is today, Oct. 12, 2010.

Later.

Another day

I have been pretty worthless lately. I had that burst of energy the first week I started Tyvaso and now that seems to have fled. Yesterday I managed to wash the dishes and sweep the kitchen floor. Not all that much.

The side effects hover just outside my consciousness. A minor headache, some stomach unease, nothing to worry about. I think I have taken four Tylenol since beginning the new drug. I have spent more time asleep late in the afternoon though. That usually means I wake up just in time for my last treatment of the day. That one knocks me on my rear and I go back to bed pretty quickly after that. I might grab a bite to eat. More likely I stare in the refrigerator and the cabinets and then give up.

In a couple of months, you will have been dead for a year. Much can happen in a year, yet it flies by in a blur.

I tried to make connection with your brothers. Neither really reciprocated, though they were polite. I do not wonder.

I ruined a couple of chances to make contact with some of your friends. Others graciously added me into their lives. These friends loved you and cared for you. They fit the definition of friend.

FB offers a forum for folks to spread their causes. Help cure ______ (you fill in the blank) by __________ (again, your choice). I can tell you from my perspective how irritating this gets. Of my 400 or so FB friends, about 275 to 300 have PH or CF. Papering your wall with PH stuff preaches to the choir. I agree we all have friends who need to know about PH or CF, but the majority of our friends also suffer from the disease. I am more interested in the daily lives of my friends. So far, no filter exists for that. Haha.

Got to overhaul my body before my appointment with Doc. I seem to procrastinate even more these days because I can. Not good.

What do you think, Dude?

Later.

Monday, October 11, 2010

Today

The skies rained today. I slept through it. Oops. I visit Doc tomorrow.

I miss you, Dude.

Later.

Sunday, October 10, 2010

Sunday, Be There

This print by Jo Parry says it all. Happy Sunday!
I am thinking of you, Dude.

Later.

Saturday, October 9, 2010

Reelin' in the years

Your everlasting summer
You can see it fading fast
So you grab a piece of something
That you think is gonna last
You wouldn't know a diamond
If you held it in your hand
The things you think are precious
I can't understand
  Hear a particular song and immediately memories come bubbling up like a spring in the desert. I cannot hear John Philip Sousa without thinking about the college ROTC band which practiced not far from our house when I was about 4.

http://www.youtube.com/watch?v=gFz79SBnuk8&feature=related
"The Third Man" theme always will evoke a memory of my dad in the living room acting like he was dancing.

"Itsy Bitsy Teeny Weeny Yellow Polka Dot Bikini" hit its popularity the summer I stayed with Uncle Charles and his family.

The Beach Boys and surfer music marked my senior year in high school. The rebellion began.

In the early years of college, show tunes and the Beatles. Dad enjoyed embarrassing me with his rendition of "Wild Thing." Then the rebellion hit hard with Moody Blues, Led Zepplin and Janis Joplin.

Add into the mix a good size portion of country and western -- from Bob Wills to Jerry Jeff Walker, from Johnny Cash ("Ring of Fire")  to Willie Nelson. Do not forget R&B and soul or Cajun. Or Kinky Friedman or Linda Ronstadt or Emily Lou Harris.

Blues came into my life when I started working in a newsroom. What does that tell you? Gatemouth Brown, Muddy Waters and Johnny Winter. Eric Clapton, Stevie Ray Vaughn, whew.

Leonard Cohen's genius for lyrics could melt a frozen heart.

Somewhere along the line I got stuck on the old stuff. I am not goofy for Lady Ga Ga. The White Stripes are OK and anything rap can take a hike.

See what I mean? Tracing my life by the music.

Ahhhhh haaaaa, Dude.

Later.

Friday, October 8, 2010

Blessings

Think of writing as punching a hole in a water-filled balloon. Depending on the size of the hole, the water trickles out or gushes.

A friend uses her blog to delineate reasons for thankfulness each day. Today I will borrow a page from her blog with a slight adjustment to fit my needs.

I am thankful for ... (sorry alex)

enough money to buy food and medicine.

my cats, which offer nonjudgmental companionship and unconditional love.

my friends, who take me places so I will not have to drive.

my mom, who offered to let me move back home (no way, no how, but thanks nonetheless).

the ability to do for myself.

Doc, who saved my life and puts up with Dr. Cindy.

my PHriends, members of an elite fraternity who offer support and caring from all across the country.

your friends and family who think about me and tell me so.

Later.

Thursday, October 7, 2010

Update

My PHriend has new lungs and rests in ICU. What a miracle.

Today I wish I had a digital camera. Satchmo was lying on his back next to my spare o2 mini tanks, which he had knocked over chasing a bug. He looked like a drunk who had passed out next to an empty keg.

My body seems to assimilate the Tyvaso without too many problems so far -- minor headache and minor jaw pain all I have noticed. The final round of increases will tell the tale.

:-) Dude

Later.

Every breath I take

Would I have the courage to get a lung transplant?

One of my online PH friends from Fort Worth lies on the operating table. The doctors opened her chest just minutes ago. Another six to nine hours before the docs sew her back up.

In the blink of an eye ago time wise, doctors amputated limbs without anesthetic. Now they replace body parts. Amazing.

In my former, not so sick life, I paid little to no attention to transplants. I recall seeing press releases for fund-raisers. I thought trying to raise that much money with garage sales and dances was not easy. I recall at least a couple of people who died before they got their call.

I knew the importance of organ donation and signed up about the time I started driving.

After I got my PH diagnosis, I began to see the miracles the surgeries accomplished. These stories became more personal. Through the Internet, I met and talked to those waiting for new lungs or kidneys. They became a part of my life.

Several of my friends got new lungs. I rejoiced with them and their families. I sat on the edge of my chair waiting for information and cheered with the good news. A second chance.

I also have seen the down side of transplant. For whatever reason, the body rejects the lungs despite efforts of the docs and recipient. The patient receives another year to live but the year hurls every obstacle at the patient. Some die on the table; some never get the call.

You are in my heart, Dude.

Later.

Wednesday, October 6, 2010

too funny

Today I went looking for an image to show my mood. These girls do not illustrate my mood, but boy how funny! Laugh out loud funny.

The third Tyvaso treatment of the day brought some different jaw pain. Like when you clinch your teeth all day. Not painful necessarily, but makes your jaw very tired. May have to suck on hard candies or something.

Peace to you Dude.

Later.