Monday, January 31, 2011

You don't need a weatherman

The local weather guys hop from foot to foot in excitement. Ice, snow, doom, gloom. Who knows maybe this time the guys win. Just in case, I spent the better part of the morning yesterday cooking.

I made a meatloaf and a cheesy potato dish, the recipe I made up as I went along. I packed the cooked meal up along with some Emeril Italian Essence and delivered them to Connie. Her get up and go vanishes by the end of the day.

I also threw together a beef stew. My stew has tomato juice in it. I got carried away with the veggies and the pot ran over once the mixture came to a boil. So I had to put some in a smaller pan to cook. The runover left a huge mess on my stovetop. By this time I am worn out, so I left the mess.

Stew blood has dried now and will require twice the effort to vanquish the mess. The surface of the surrounding cabinets look like a serial killer had a party in my kitchen; tools of his trade sit nearby, ready evidence of the crime. Dirty dishes, failing to hide their latest debauchery, also donned a coat of stew juice. A chunk of carrot slipped to the floor on its way to veggie hades. Tissue fine chunks of onion skin cling to the counter.

So, bring on the blizzard, I can handle it.

The television however, does not offer much help in the entertainment arena. My idea of  blizzard heaven involves good food, drink, reading and TV. I love to bundle up on the couch with a kitty or two and watch some sports action on the tube.

Scant offerings push me into watching Winter X Games. To fill the alloted time, the producers show slo-mo for every contestant. After awhile I found that irksome. The live night events with the poor lighting drive me insane. The snowboarders were fun to watch, thanks in part to personalities like Shaun White. However, I must confess I find the snowmobile stuff a little out there.

I would much prefer to watch football, but even that will end next week. Soccer season continues as does basketball. Baseball hovers in the wings. But what does one watch on a Monday night?

I still miss someone.

Later, Dude.

Saturday, January 29, 2011

The staff of life

Woo hoo. I went to the grocery before 9. Purchased everything I will need for the next week, got halfway home and remembered I had not bought tomato juice. Rather than turn around, I went to the store a few miles in the opposite direction.

I bought a some items which were not necessary, like three kinds of artisan bread: a baguette, ancient grains loaf and a sort of round parmesan/asiago loaf. The baker had just put the baguettes out and they still were warm. I cut the parmesan for breakfast. Yummm. Guess I need some carbs?

Pretty poor offering for today. I did get a nap.

Later, Dude.

Friday, January 28, 2011


Well folks, this morning I noticed puffiness around my ankle zone. You know what that means? Too much salt. I just had to have some nachos from Rosa's. Let's see: salty chips, salty beans, salty beef and, oh yes, salty cheese sauce, but the sour cream cancelled that out, right?

Boopie, the Youngin' and I ate lunch today. More salty food. Time for some simple food.

I picked up some more cat food after lunch. Pogo's favorite has a new flavor: chicken and cheese. So far, he seems to like this one. Since I got a case, he probably will tire of it tomorrow. Cannot win.

My neighbor, Season, did not have the money to pay her rent this past month. The management said they would try to work something out, but Season said (after a hissy fit) that she would move. She moved in with the man next door to her. She says they will look for a two bedroom apartment or house and then they both will move. Oh, yeah, she has two cats. Choices in their price range will be limited. Since neither of them have a car, I wonder how they will manage this, but I have said nothing.

The Tyvaso sides nag at me today, not sure why. Head pounds, stomach yucky and heartburn. Ugh.

Later, Dude.

Wednesday, January 26, 2011


My mom's heart doc had his nurse call me to ask what meds I take for PH. Her doc scheduled an echo to get an estimate of mom's pressures. The doc asked the name of my doc.

That's the way it was, Wednesday, Jan. 26, 2011.

Later, Dude.

Tuesday, January 25, 2011

Go ask Alice

They are now part of my morning and evening routine. Yellow, pale salmon, pink, but mostly white. Oval and round, large and small, their bottles lined up like toy soldiers preparing for a campaign. Some hang back in the ranks to counter the effects of the others.

Inhaling cigarette smoke scarred my lungs, yet each morning I inhale three medicines to counteract my past. Some irony there, huh?

Oh yes, about my friend o2. He demands attention 24/7. I must carry him with me like a sick child who refusers to be put down. I do get to be alone in the shower, giving me some semblance of normalcy.

Did I mention these fellows come with baggage? Some days it may be a steamer trunk, other days only a carry-on. The amount and weight of the baggage surprises every day.

Carry on, Dude.


Monday, January 24, 2011

Filling space

Mother Nature put on her gray lady suit this morning. Drab makes me shiver. Coffee cup, hot dish water, mitts -- my hands and feet seem beyond help today. I will resist the urge to bundle up on the couch with the heating pad at least until I make some headway with the chores.

Dust on the tables forms shadows of knickknack bases. Cat paw prints mark the route from the floor, across the table to the window and back. Dried food paints a history of the past several meals on the plates stacked on the cabinet. Out of place objects cry to find their way back home.

Invisible visitors hang their traps in the high corners of the ceilings. Perfect patterns undisturbed for weeks. Do they creep in search of new places in the wee hours of the night? I do not know for I only see evidence of their existence.

Papers, books and other bits and pieces of my life are stuffed in disarray in a closet. Most serve as tokens or markers. Do I really need the program from a musical I participated in some 40 years ago? Or love letters from my first boyfriend? A desiccated flower whose origin I no longer remember? Some of the objects near the age of antique. A Viewmaster in the original box. A transistor radio. A pool cue in a carrying case. A camera which requires film fell into obsolescence last year. The bag may contain undeveloped images,  record of a time I have forgotten.

Coated in grimey layers of dust under the cabinet in the bathroom another symbol of the times -- hot rollers. Also in the cabinet rests a jewelry box with various pieces of junk jewelry. Love beads. A disco inspired neckace, a tiny silver roadrunner with a piece of turquoise as his eye. My mother's Bulova watch with the black cord band.

I wonder what the one who will have to go through these relics will think? I hope whoever does it will take the time to ponder the life they represent.

I miss you, Dude.


Sunday, January 23, 2011

Observations on a Sunday

The sun shines abundantly, scattering cheer in the wake of the gray gloom that was yesterday. The iridescence brings out the tiny flaws that the drabness hid, each now a pockmark on the landscape. Minute particles float blithely, gliding in a new dance when the air stirs.

A glow fills the room. The blinds filter the light making a dingy room seem only mellow. Thomas Kincaid in a bedroom in Texas.

Pogo's feed me meow loops constantly until it numbs the senses. Tyranny in fur. Once sated, like an old man, he totters to his spot to soak up the warmth of Sol.

Satchmo sprints from living room to kitchen, chasing invisible mice. He prepares for the day when his skills will elevate him to hero status. Then he waddles like an ancient possum to his hidey-hole to chase mice in his dreams.

I miss you, Dude.


Friday, January 21, 2011

Elixirs and fixers

Thought the temperatures chilled this morning, Connie and I got out to run some errands. By the time we finished, the air had warmed but the wind blew hard enough to offset the temperature gains.

We chose Thai Arawan for lunch. Connie got sweet and sour chicken and I got the banker's special.  I enjoy Oriental food, but now I am as thirsty as a peony in the desert.

We made a trip through the grocery store; neither one of us sure what we wanted except Diet DP, which was on sale. I guess I must be on a chocolate binge after a long time of restraint. Cookies, ice cream, and candy found their way into my basket.

By the time we got back to my apartment and I changed clothes and put away the groceries, I began to feel SOB. Nearly six hours had passed since my last Tyvaso treatment and I was beginning to feel the effects. The wind tends to make me feel bad, too. I did my treatment and lay on the couch for a bit.

I ate some cookies and subsequently feel yucky. My body, in not so polite terms, tells me what might taste good on the tongue will take its toll later.

Ted apparently drove across country to his hometown. Below is his latest blog post. If you are a Sox fan, check it out.

One of my friends got to see Junior Brown last night. I bet you would be jealous.

Missing you, Dude.


Thursday, January 20, 2011

Asleep at the wheel

Not really anything new to report when one sleeps all day. I did not feel bad as much as I was trying to get warm. Mission accomplished. Oh, and I did manage to get the dishes done, too.

I am thankful for a wonderful SIL.

I am thankful for friends who help me.

I am thankful for chocolate.

I care, Dude.


Wednesday, January 19, 2011

Please understand

I went online on FB this morning for the first time in a long while. Now I remember why I do not do it more often. Do not get me wrong, I love talking with my friends, but my multitasking skills are not sharp anymore.

I talked with your brother for a bit. He said he has not read the blog in a month or more. Does that mean I can let loose on SG? Nah. I think I am beyond that pretty much. I still blame her for the agony you were in the last few weeks of your life, but I have decided being upset serves no purpose. Karma sooner or later will catch up with her. BTW, another author penned a book titled "Sick Girl." Her work was published in September 2007.

I still miss you horribly, that has not changed. I do find some comfort in being able to email your mom and keep up with the efforts to form The Cystic Dreams Fund. I also have found a great friend in K. She serves on the board for your fund and I know she will represent your views.

Yesterday and today chest pains cause me not to feel as well as I should. Actually the pain targets more the back, but does seem to encircle my body.

A fellow PHer in Mississippi writes poetry. Today's work touched on depression and suicide. As men and women with PH and other incurable diseases, depression often pays us visits. Just another symptom we must deal with, but we are tough.

Missing you today, Dude.


Tuesday, January 18, 2011

Speaking the language

Sometimes I wish Pogo could talk. Oh, he gives talking his best, just not in English. Fortunately, I know a few words in cat and he knows several words in English. So we manage to communicate.

Pogo knows the word down. His repertoire also includes no, back, stop and hush.

In cat, I know hurry, momma, hungry, starving and up (what he utters in midair on his way to my lap).

Pogo also uses body language and his paws to communicate. When he thinks "enough sleep already," he  pokes me on the arm with claws retracted. When he knows for sure I am awake but faking sleep, he pulls the claws. Not hard, he draws no blood, but he warns that will follow soon.

If the dish on the footlocker needs water, he sits patiently beside the dish and stares at me until I notice him. He might poke his paw into the dish and then look at me again. "Get the message??? Huh? Huh?"

Since Satchmo is younger and more the quiet, silent type, you really have to pay attention to get his message. Except when I am lying down with my CPAP on and he shakes the hose. "Hey, look down, I'm here. Let me walk under your outstretched hand." He knows more English than I do his dialect.

The boys do have similar words for bird, bug and children. Pogo tells me when Connie pulls up out front or when my next door neighbor walks by.

Sometimes they are a pain in the neck, most most of the time they are a joy.

Later, Dude.

Monday, January 17, 2011

Monday blues

This morning met me with a case of the yucks. Somehow that does not surprise me. I hate to waste energy. I wish there were a way to budget more. When I have energy, I use it.

I swallowed too much before I rinsed following the Tyvaso treatment, so I am nauseous. To top the beginning of the day off, my CPAP digs into the top of my nose. (I have tried foam tape, Tegaderm and cotton. All hinder the seal of the mask.) This morning my nose bleeds and hurts. I need to go back to bed, but I cannot lie down without my CPAP. Oh yes, and Pogo missed the box this morning and I had a puddle to clean up.

Mom's friend who went with her to the doctor, sent me the notes she took. The doctor said mom has PH, pulmonary fibrosis and a pericardial effusion in the left lung. (I can hear you saying, "Some serious shit.") At 89 she deals with this so much better than I do. I suggested to my mom's friend to encourage mom to visit a specialist and gave her the information. Mom and I have a distant relationship, but I love her.

Later, Dude.

Sunday, January 16, 2011

Slow Saturday

I spent yesterday afternoon with Connie and an old college buddy, who came up from Plano. He works for the government and went to college near here. He developed a relationship with this part of the country and has to have a fix every now and then.

We watched the Ravens and Steelers game. Pretty exciting. I cheered for the Steelers. No reason other than I used to like them during the Steel Curtain days.

At the end of the game, the party broke up and Connie brought me home. I ate stew I made yesterday and watch some of the Green Bay-Falcons game. No match there; Rodgers rules. I fell asleep before the game ended.

J&D began a blog about dining, spirits and cooking. J said I could blog with them if I want, so yesterday I did my first entry. The writing was a bit awkward, but I will get better. I am rather rusty. I appreciate this opportunity to write about something I love.

The clouds have lifted and once again the sun shines.

Later, Dude.

Saturday, January 15, 2011

The sky is crying

Yesterday I went to the one place where I thought I could get a bit of sympathy. I found disappointment instead. Maybe I expected too much. Maybe the moon was not in the right phase. No matter, the blase reaction I got to my need for reassurance and comfort only served to make me wonder about my choices.

Today the sting smarts even more. Why do I bother? Maybe I need a vacation from everything.

Am I feeling sorry for myself? You bet. I feel the clouds moving over the sun.

If I had the energy, I would cry. Instead, I sit here and try to write my emotions away. At times like this, I miss you the most, Dude. You were a great listener, but you liked to talk more. The wind of your words relegated my blues to their proper place.

Ted wrote about Luis Tiant on the Sox blog this time. Ted writes well, but needs an editor. I think he knows that. I remember discussing Tiant with you, Dude. The world seems full of coincidences as you put it.

I am thankful for Connie, K, Boopie, the youngin's, J&D, J&B.

I am thankful for music that audibly expresses the way I feel.

I am thankful for the rudiments of life.

Later, Dude.

Friday, January 14, 2011

A blow

My mother's doctor told her today he thinks she has pulmonary arterial hypertension. She is 89. If she indeed does have PH, that likely explains mine. I hope the doctor errs. He based his diagnosis on an MRI.

She has several of the symptoms including SOB and swollen ankles, which sent her to the doctor in the first place. He prescribed lasix, potassium and an appointment with her heart doctor. The heart doctor can work her in on the 26th.

Mother always has been healthier than I. She exercises religiously and wears a size 2. I hope the doctor is wrong, but I fear he may be right. Not something you would want your elderly mother to go through.

No matter, we will deal with it.

Later, Dude.

Thursday, January 13, 2011

Rude awakening

Some people like the internet because they can be someone they are not. I like it because I can be me, warts and all.

Much of my life I have spent trying to shape myself into someone else's mold. My way of trying to fit in, to be a part of some group. I tried being fun and cheerful when inside the rain poured.

At my job, I worked to be the best, but there always was someone who did it better. I rated mediocre at best. I never received the extra training or the seminars away from the job like some of the others did. I resented that and at the same time those decisions only reinforced my inferiority in my mind.

I spent most of yesterday wading through the process of Medicare. Whoo, boy. I still have not come to any decisions about what would be best for me, but I have learned that the process overwhelms and I will be broke in a month.

Somehow that seems wrong. People work most of their lives and when they tend to be the sickest and need the help, it costs their life savings.

Sometime during the past 70 years or so, some lawmakers thought it would be a good idea to borrow from Social Security. We all know from experience that robbing Peter to pay Paul does not work. The problem snowballs. But I will not continue in that useless vein.

Today I will get out to visit the vampire and pick up some prescriptions at the drugstore. Tomorrow's agenda includes lunch with Boopie and the youngin'.

Oh well, I will continue to soldier on.

Later, Dude.

Wednesday, January 12, 2011


I am beginning the process of deciding how to go with Medicare. Boy what a headache! Thankfully I can find some help in several places.

I am grateful for:

Help for processes I do not understand.

The Tyvaso helping.

Those that know I am not an ogre.

Later, Dude.

Tuesday, January 11, 2011

No debate



Later, Dude.

Oh yes, I forgot something.

I am grateful for friends who are willing to help.

I am grateful I am at least a tiny bit intelligent.

I am grateful I do not have a lot of wants.

Later again, Dude.

Sunday, January 9, 2011

Mush, mush

I made mush and cheese this morning.. I followed a basic recipe but managed to overcook the macaroni, thus mush and cheese. However, the concoction tastes pretty darn good. The dish contains enough fat and calories for 12 good men's daily allocation. Half-and-half, sour cream, milk, cottage cheese, Velveeta, sharp cheddar cheese, gorgonzola and mozzarella.

I am grateful my side effects are minor.

I am grateful I have a great doctor.

I am grateful for naps.

Later, Dude.

Saturday, January 8, 2011


I am thankful that I am still sane.

I am thankful I am at the end of my life rather than just starting.

I am thankful for those who came before me.

I am thankful I met you and as a consequence your mom and K. I miss you, Dude.


Friday, January 7, 2011


Sometimes you never see inside a person, i.e. the Princeton student who killed himself after leaving a 4,000+ word suicide note. His note is very painful to read.

We should all remember that appearances often do not tell the whole story. Our bodies and our smiles can be a facade.

I am grateful for friends who see me as I am and still love me.

I am grateful for enough to eat and a warm place to live.

I am grateful for my cats who love me even when I get peeved at them.

Later, Dude.

Thursday, January 6, 2011


I need to get out of the house. I went to pay the rent on Monday and have gone nowhere since. I am short-tempered with Pogo and I think he may be the same with me. That calls for a change. The temperatures should hit near the 60s today and tomorrow, so I need to gear up for an outing. Besides, Pogo's food dwindles by the hour. If you think he irritates now, just wait until I have nothing to offer him.

I am thankful for hot water. (I had none yesterday.)

I am thankful for Connie's boys who grew into caring men.

I am thankful for a car that runs despite neglect from me.

I miss you, Dude.


Wednesday, January 5, 2011

Fraud & the CFer & PHer

For the most part, the folks I have met on the Net are on the up and up. Most have hearts of gold and are isolated because of disease. I am sure there are nuts out there and some may end up being our "friends" on FB. That danger remains one of the drawbacks of the Net.

Through the Net I have become friends with a few people who have CF. CFers, more than say PHers, seem targeted by fakers and fraud.

I can understand how trusting people get sucked into schemes. I am naturally suspicious, not everyone sees what I see. Sometimes I get a warning from what I call that "still, quiet voice," others may call it gut instinct. Everytime I ignore that voice I get into trouble. Finally after 62 years, I listen more closely.

My mantra:  "don't expect something for nothing." Buyer beware is another.

Thinking of you and your family, Dude.


Tuesday, January 4, 2011

What, me worry?

Sometimes I worry about the craziest stuff. My insurance through work-disability ends in April. If I understood right, Medicare should kick in then. What if a lag occurs? How do I choose a supplemental insurance company?

I am a reasonably smart person. Math stumps me, but I can read a person pretty well. Build up plays a part in my anxiety. Rather than look for a solution until I find the right one, I choose to worry about the what ifs. You notice I said choose.

Maybe I am a natural worrier. If insurance were not the problem, then something else would slide right into its place.

Why must everything be so complicated? After awhile, government forms and procedures make me want to just say, "OK, do whatever." To me, insurance seems like a giant scheme, but one we now cannot do without.

On a positive note, I did get my desk drawer and files cleaned out. I am mulling what to tackle today. I think probably one of the bathroom closets.

Dude. Later.

Monday, January 3, 2011


Today, in my mind at least, I am motivated.

Many chores offer themselves up for attention. So far I washed the dishes. The hot water always feels so good on my cold, cold hands. I think today I also will tackle the desk drawer and the files from last year. The poor little table with the file folders nears collapse from the weight. The white Tyvaso boxes will make great storage containers. The desk drawer ends up being the catchall. I can toss most of the contents.

These tasks require little physical exertion, so any excuse ranks as lame.

First a bite to eat (I need energy to tackle chores, you know), then the paper atop the printer.

♥ Dude, Later.

Sunday, January 2, 2011

Something to chew on

Another frigid day. Today the thermometer says 11. The wind behaves itself, so I can move about. A little wind at these temperatures can send me to the bed faster than a horned frog after a badger.

The new year brings a time of flux. The circle of life. A new cycle began yesterday. As time goes by, people and events hone us.

Meeting new people on FB has a positive and negative side. While sympathy and support sustain me, I grow weary at times from all the negativity. Those of us with rare diseases feel the penny pinch. Some of us have good insurance, some of us have none. A daily dose of please help my organization (me) raise money grates on my nerves. I feel empathy with these folks, I wish I could help everyone. The constant cacophony of pleas places a burden on me I am no longer willing to bear.

The situation presents itself like a bad tooth. The excruciating pain sends you to the dentist. He extracts the offending tooth but causes a different kind of pain. Eventually that pain goes away and you adapt to the missing tooth, pain free. So pull them all to make sure you are pain free? No, you need teeth, but the decaying tooth can cause problems with the others. So sometimes getting rid of one will save the others.

May the new year bring healing and hope.

Later, Dude.

Saturday, January 1, 2011

New year, new me? Probably not

Not starting 2011 off in a good way. My left shoulder joint aches to the point of waking me up. I also have some chest pressure (pains) this morning.

The temperature gauge says 10 degrees. Brrr. At least the wind does not blow, yet anyway.

I do not make resolutions per se. My hopes for 2011:
  • To allow life to develop on its own.
  • To not worry so much.
  • To listen to my inner voice more often.
  • To not feel guilty about my decisions.
  • To make decisions for myself.
  • To speak out against wrongs.
  • To praise good.
  • To live in the moment.
Later, Dude.