'splaining my reasons

Sometimes life gets pretty intense. Sometimes I can no longer handle everything. So, I take a time out. Nothing personal.

Some of my PHriends created a group about PH for members only. This allows everyone who has PH to vent without worrying that friends or family will take issue with the topics. There was a brief bit of dissension about a sex topic and somehow the thread was taken down. Then a couple of folks left the group because of alleged censorship. Well, both of those folks came back to the group.

I, on the other hand, left the group and the new group for PH support group leaders. I have read most of the posts and for me personally, I find them supportive, but I also find that dwelling on PH all day every day does not help my own personal journey. I tend to worry and the more I meet folks and hear their stories, the more I worry.

One of these days, I might ask to join the group again, but for right now, I need to let the day in and day out grind of symptoms and so forth rest.

Please understand, I do not love the people any less and I will keep on talking to folks, just not read about it all everytime I log onto FB.

Dude, your dream closes in on reality.

Later.

The way the day went

This photo was taken by Amarillo Globe-News photographer Michael Norris on Sunday.

http://www.youtube.com/watch?v=WLMjHy12eWo&feature=related

Today has not been one of the best. Around 10 homes so far have been destroyed near Amarillo and several smaller communities were evacuated because of the danger. One of the city longstanding kennels burned to the ground.

The home where one of my godsons and his fiancee live also burned today. Fortunately their three dogs and cat were OK. They found the poor scared cat (ironically his name is Smoke) in the bathroom. The dogs were outside.

I did not crack my door and spent most of the day on the couch under my CPAP. I ache, my ears tickle and itch, my throat hurts and scratches. I am coughing and generally feeling miserable. Six months have gone by, more or less, since the last episode. I should be thankful, but right now that seems pretty distant.

The wind still hooshes outside. Aarrggg.

Later, Dude.

The Big B

Yep, folks, the Big B has hit me once again. I had a script for prednisome that was two treatments worth, I started that yesterday. I also have a Levaquin script, that through a mixup, was never taken and it is almost a year old. I am thinking about hitting that too. I think I will wait to call doc in the a.m.

In the meantime, I feel like s**t.

Grrr.

Later, Dude.

Yuck

Ugh. :~(

Later, Dude.

Knock knock

I am afraid I am almost sick again. I have a gurgle in the back of my throat and a dry cough. Portents of bronchitis. Of course the weather has nothing to do with this. Why do I seem to get sick on Fridays?

Later, Dude.

And that is the way it was ...

Yes, I still am here. No, I have nothing to say today.

Later, Dude.

What, me worry?

Crazy day. Crazy times. Crazier than shit. Crazy as a loon. Crazy.

Finding meaning

Today turned into another marathon FarmTown day. I wrote a longish email to a friend. Cooked fried chicken (Pogo sleeps soundly right now, stuffed to the gills. His tail moving in time to some dream he has.). And washed the dishes (cooking the chicken made more dishes to wash. Tomorrow, right?).

I cancelled the appointment with my heart doctor for tomorrow. The receptionist rescheduled it for the same day as my appointment with Doc. I like getting them both over with on the same day, although it will be a long one.

One more Tyvaso treatment and some pills and I will be off to bed. I feel like I need extra sleep.

Do men more than women have a yearning to leave a legacy? Something tangible that proves they lived? I suppose we all want others to remember us. But after the ones who remember us after we are gone are gone themselves, then it matters not we were here. Unless, of course, you are Abraham Lincoln or William Faulkner. They hang around a little longer, but eventually they give way to the dust of history on some forgotten shelf. A tiny footnote in the millenniums.

OK, Dude. We will make it happen.

Later.

FarmTown ladies sing this song, doo-da, doo-da

Hello. My name is Molly. I am a FarmTown addict.

Today shapes up to be computer games, cooking some veggies and the couch. I have never been a big NBA fan, although I did follow it avidly during the Cheeks, Bird, Dr. J era. Mo played for my university way back in the day. Anywho, not sure what I will watch on the tube while I am falling asleep.

I worked so hard on the kitchen yesterday but in the morning light I noticed several spots I missed. Maybe that indicates failing eyesight? Of course, if I wore my glasses more here at the house, I might see more.

Naptime.

Later, Dude.

Here today, gone tomorrow

The windows are open for the third day in a row. The pushing and shoving between the boys brought the kitchen curtain down. Sunshine can be a great impetus.

I shall add thoughts as I take cleaning breaks.

* Sunhine makes me happy.

* Cloudy defines the kitchen window.

* Mind over matter.

* Cleaning products make breathing harder.

* I saw spaghetti sauce splatters in the most unlikely places.

* Cleaning people deserve every penny they get.

*The adventure in the kitchen quickly draws to an end.

* I may not be able to wiggle tomorrow.

* The apartment would always be dirty if I paced myself. When the energy hits means the Boston Marathon.

* I am witholding food from the boys. Bad me, bad me.

* The time between breaks gets shorter and shorter.

* I am trying.

Later, Dude.

I hope you know

Sometimes the niceness of people astounds me. These people go out of their way to give. I know several people like this, but everyone of them to a person would not think I am speaking of them. These folks know the importance of the little things. They work from the sidelines or behind the scenes. They offer hope in a seemingly hopeless world.

Well, Dude, your dream of a fund officially launched. I hope you know. J and I have found common ground. I hope you know. K and I found each other. I hope you know. Roomie and I found each other. I hope you know.

I learn more and more about you in dribs and drabs. Everything I learn, I like you more.

I hope you know.

Later, Dude.

Because of a (wo)man

The temperature nears 70 and my head threatens to explode. I have the kitchen window open and the boys have been scuffling over who gets to sit on the window sill. The loser has to sit on the cabinet and gets all the smells secondhand. The weather causes sinus woes. Tylenol, here I come. Time also for a nap. Catch you later, maybe.

Later, Dude.

Oh, darling, please don't you cry

Another one for the books.

I talked with the college roomie today on FB. Good guy. He offered some interesting information. What he said was not news to me, but substantiates what I already have heard. He shared about his stepson. I could tell he worries about him. I channeled you, and told him what to check after he finishes this series of doctor visits.

I had a bit of mom scare today too. The nurse who goes by mom's house to take mom's blood, could not get mom on the phone, so she called me. The nurse lives in the same town as my mom and offered to go by and check on mom. Well, mom had been out playing bridge. I got her on the phone after I hung up from talking to the nurse. I am thankful my mother has folks to check on her and sound the alarm if necessary.

Mom also told me she had a nose bleed that would not stop and had to call 911. She must have charmed the dickens out of the EMTs because they packed her nose, put ice on her neck and hung around until they were sure her nose had stopped bleeding. One of them told mom he did not think she would need to go to the hospital and there would be no charge for the call. Wow.

My PHriend does have the rarest form of PH. At least now she can dump flo. She surely will be listed for a transplant pronto. More prayers, good thoughts please.

I spent all afternoon talking to a rep of Humana about the company's medical advantage plan. My head was spinning before I got to hang up. What if .....

I worry too much, but I would not be me if I did not.

http://www.youtube.com/watch?v=_-XeHmrNSoc

Later, Dude.

Hallmark moments

Geez, where to start?

I went to the vampire this morning. Workers have much of the waiting room torn up. Doc wanted a semi-waiting room for quick consults after PFTs, X-rays, 6MWs, etc.

At a typical appointment, you are weighed, o2 and BP taken and then placed in a room. Within 5 minutes, doc comes in and you run down meds, go over any new symptoms, etc., he listens to heart and lungs, then we talk about anything I want to know, etc. Then he sends me to do whatever tests he wants and once they are done I am placed in another room  (thus a semi-waiting room). He comes in says looks good or shows me the X-ray. Then he tells me to come back in three months or call if I get sick.

I went out of the apartment and drove on my own today. I actually had enough energy and breath to walk uphill from a nondisabled parking spot. Doc's office sits at the back of the building, too. Woo hoo!! I also went to the Great American Harvest store and Walgreens. We will not talk about the chocolate, bread or cashews, OK?

Today when I checked the mail, I got a valentine card from J. That made my day even more special today.

The downer part of the day concerns my PHriend. She needs positive thoughts, prayers, whatever you do.

Thanks, Dude.

Later.

Foray into Filipino

Happy day, sweethearts.

Today Boopie, the Youngin' and I went to eat at a Filipino restaurant.

The building that houses the restaurant once was home to A&W Root Beer. After several incarnations, Menchie's opened in June.

Menchie stands about 4 feet 9 inches tall. She had to stand on a box to see out the kitchen window into the eatery. She offered a sunny smile and a slight bow.

The food shares similarities with most familiar Asian foods. Each of us got a different dish. My dish was Pancit Bihon which was rice noodles, celery, onions, red bell pepper and chicken sauteed in garlic and soy sauce. Unlike many dishes, there was only a hint of soy.

Boopie got a sampler dish that included some wonderful barbecued pork on a shewer. She shared and the flavor of the sauce was tangy but not spicy. The Youngin' stuck with fried rice with chicken.

Boopie and I both got egg rolls and fried rice with our dishes. The egg rolls were wonderful and so not typical. I asked about desserts, but we all declined. Before we got up to leave, the waiter brought us a complimentary dessert. Some sort of sticky rice that had coconut milk and brown sugar in it. It looked like sort of a slice of pineapple upside down cake without the pineapple. It was OK, but not sweet enough for me.

I would eat there again. Friendly, informal. Great place to laugh and enjoy friends and food.

To anyone reading these words, love to you.

Later, Dude.

Run that by me again

I just had a young man try to sell me something about oil changes and neighbors. I politely said no. The not so funny part of all this was he said he used to live in a trailer park and I reminded him of his aunt. Oh, oh, oh. Thanks, I really needed that.

Thanks to a friend for listening. You make a huge difference.

Later, Dude.

Far too much pain

You see, I got hurt.

I expect I thought you needed me. I am a sucker for someone who shows just a little caring. Then when you were dying, I knew. Your death ripped my heart out, maybe because we had not gotten to know each other better before you went. Time might have changed our relationship in ways I would not have liked.

Speculation serves no purpose. I will never know in this lifetime, yet the questions sometimes eat at me.

Because I could not let go, I am faced with new problems. I think or hope I am someone I am not.

The life I have right now is not living. I take my meds, eat, wash dishes and sleep. I do not hear a human voice unless Connie calls. And I see Boopie and the Youngin' every other week. People I thought were friends got caught up in their own lives. I do not begrudge that and I do not lay blame at their feet.

It is far easier to hide in my apartment, wear my gown all day and not interact with anyone. If I do not talk to anyone, I will not get hurt. Yet no interaction hurts too.

I miss you terribly, Dude.

Later.

Poor, poor pitiful me

Later, Dude.

Dispirited

Who would have thought a culture of sickness exists? Seven years ago, for me, it did not. Now my life enmeshes itself with others like me. With the help of a computer, they have become my life.

Trying to be helpful, I stuck my nose where it does not belong. I need to "put down the gun and step away."

As much as I hate to admit it, I think I may have an infection. If I had tonsils, my left one hurts.

The news about my friend makes me sad. The docs think she has an even rarer form of a rare disease. The options get fewer and fewer.

Later, Dude.

Drat

No cutesy today

Yowser. What little snow there was hit the fan today. A giant, angry fan at that. Wind makes a little snow seem like a vicious, life sucking monster.

I worry today about a fellow PHer. She has gradually gone into a tailspin the last few months. She has side effects and side effect medicines that do nothing, some even making her sicker than before.  The movement to get a transplant seems to be stalled. I know she wants to live and fears she will not. I wish I could reassure her.

Time to try to sleep and keep warm.

Later, Dude.

Clean all over

I woke up the first time about 2:30 a.m. After a couple of necessary duties, I went back to bed and slept until about 8. Maybe I needed the extra sleep because a burst of energy struck and I went after the apartment. Now I do not want to eat because I'll get the kitchen dirty. I even washed the vacuum filters and my hair. Washing my body looms as the only task before I nap on my clean sheets. I have a feeling tomorrow will not involve much, nor the rest of today for that matter.

This Medicare thing stresses me. I procrastinate. I admit that. The what ifs drive me bonkers, but I make no move to remedy the situation.

Rodgers did prove himself, Dude.

Later.

Navigating PH

One of my friends got an official diagnosis (from a PH specialist) of exercise induced PH. I sent her a copy of the Survival Guide. The book helped me understand what PH means and how to deal with the rare disease.

After some searching, I found my guide in plain sight where I would have it handy. My copy, the third edition, was updated in March 2008. Much progress has been made since then. A couple more meds got FDA approval (one of which I use -- Tyvaso) and clinical trials are under way for at least a couple more. The basic information in my 3-year-old guide still functions as a great reference. Comprehensive information all in one place and well-organized, every patient and caregiver should have the guide.

During my search for the PH guide, I left the coat closet door open. The boys are not allowed in this closet, so an open door meant exploration time. There are books lined up two deep across the one shelf at the top of the closet. Not ones to leave any area unchecked, Pogo made the leap from the top of the cat tree beside the closet door to the shelf. The books cascaded from the shelf along with a frightened Pogo. Less than a minute later he meowed from the shelf again. King of the mountain.

Pogo also discovered his "bird" and brought it to me. He has not seen his bird in at least a couple of months and he went crazy, which is why the bird was in the closet in the first place. The bird has about lost all his feathers, so I left the bird out for now.

Super Bowl Sunday. Packers or Steelers?

Later, Dude.

* Nite *

Bedtime beckons. Do a dozen words count as writing?

Later, Dude.

Eating everything in sight blues

Empty Ritz cracker papers stacked haphazardly in the trashcan attest to the week I have had. The little black scale in the bedroom will not allow me to deny my bender in the kitchen. Stew has been one of the more healthy choices in this pursuit of SOMETHING.

I crave SOMETHING much like a runner craves his endorphins. Chocolate fills this cavity in my psyche. Extra dark, rich chocolate. The texture glides across the taste buds like a satin sheet. Each area of the tongue awakens as if touched by a gentle lover as the sweet yet bitter sensations flow toward the throat. A faint memory lingers on the tongue, teasing.

If I spend an hour writing two paragraphs, imagine how long Tolstoy took on "War and Peace."  I wonder if the words fell over themselves on their way to the paper? Or did he sit there starring into space for inspiration?

I hope to get out of the house tomorrow. I think I have cabin fever.

Later, Dude.

Mucho

Mom decided because of the weather's harshness to cancel her appointment for the echo and stress test. So now she will not learn anything for another month. I do not blame her for not wanting to get out in subzero degree conditions.

I discovered one of the sides for Tyvaso involves joint and muscle pain. Mr. P decides to hit me first thing in the morning. I get all over Connie about delaying taking medicine for her arthritis pain, yet I hesitate to take Tylenol (just about the only over-the-counter remedy option), because of its affects on the liver. Aspirin conflicts with my other meds and I am not ready to ask for a script.

Both of those friends and I communicated yesterday. Each of us had a unique relationship with you, and in some ways we represent a certain spirit, the same spirit. Like attracts like even though we all are different.

I ate myself into an additional pound yesterday. Something primal about cold weather and eating, I think. I ate two bowls of stew and lots of bread. Comfort food deluxe. I also consumed half a pint of ice cream, a baked potato and two cheese brats. Today, reason takes over (so far).

The sun offers a weak effort this morning, almost as though it needs recharging. The wind blew itself out overnight allowing the cold to take control of the miseries today.

The couch, kitties and blankets call.

Later, Dude.

Windy

Like the hound of the Baskervilles, the wind blows relentlessly across the Plains.* Old man winter (why is winter a man, but nature is a woman?) finally got in the door and now he rails for being shut out for so long. He flings snow by the handfuls at anyone and anything. The tantrum continues, but in the sky to the south hangs a fey rainbow, a symbol for millennia.

I nailed a quilt over the door and almost immediately felt warmer. I live in a complex that shows its age of more than 50 years.

A couple of your friends sure could use your wisdom about now. One got an exercise induced PH diagnosis confirmed by a top specialist in the field. Another blogs with some pain and stress. Both need you. I wish I could help because they are special.

Miss you, Dude.

Later.

* This sentence (or one mighty close to it) was the lead in a weather story written by Bill R. Lee.