Tuesday, August 30, 2011


Sunday I made a list of 12 items I needed to do. Monday, I finished 5.5 of the chores. Today the energy fled. I woke up during the night twice with severe leg cramps and had to walk them off. I put a couple of gowns in the sink to soak and checked my list. I ended up sleeping until 3. I still do not feel great. I hope I remember this next time and do not try to do everything in one day.

I want to organize my medicines and equipment and put them together. Right now, the extra medicines sit in a box in my pantry, along side my neb and tubing. My daily meds rest in a basket beside my bed; the Tyvaso occupies a nook in the kitchen. The extra tubing for the concentrators I hide in the bathroom. See??? I need the tranquility of organization.

Chocolate cures almost any ailment.

Later, Dude.

Sunday, August 28, 2011

New day

Thoughts flicker across my mind like a power point slide show. I cannot seem to focus before the picture changes.

Youngin' finds Austin to be everything Amarillo is not. The photos are his. He took them at Batfest, an annual event. Google if you want to know more. I especially love Batcow, but shoulder cat gets my vote.

 He has several friends in Austin and the odds of him making more friends are much greater there. He certainly lit up my world while he was here. Thanks, Alex!!

Pardon the interruption. I went to watch the sun come up. Without my glasses, my backyard could be used for a fairway. In reality, spots exist with dirt and rocks, so I guess rough fits the situation better.

A mockingbird landed somewhere nearby, offered his signature tune, and then flew on.

Today I am thankful for friends and all that friendship can mean. I only hope I can be that kind of friend, too.

Later, Dude.

Saturday, August 27, 2011

Day 2

Last night I dreamed I was in a big room, like a lodge, waiting for something. You were there, sitting a couple of seats away. I noticed you did not feel well. R came into the hallway with a suitcase and apologized for being late. He said he would bunk with you.

Then I was in a room with you as you slept. I knew you had an appointment, so I was there to make sure you made your appointment. I would awaken you periodically to see how you felt.

R slept in another room and I felt I needed to watch over him too. A female person helped me watch over both of you.

Right before your appointment, someone came to get you for a birthday party. I warned you about the appointment and you told me you would be on time.

I woke up about 2 a.m. and remembered I had not taken any of my night meds. Rather than take them then, I forced myself to sleep again.

Now I have been without all meds for 24 hours.

Doc's nurse and I resolved the issue with the drug company -- I hope. Doc's nurse called me twice yesterday with the progress. One of the drug company's pharmacists called to tell me she would overnight the med via FedEx. She apologized profusely. Like one of my PHriends said, shabby from a company whose motto seems to be "We would never deny a patient their meds." Hooey!!!

I will now put away this topic until events reoccur.

Later, Dude.

Friday, August 26, 2011

Day 1

Today marks the first day in an experiment involving medications. The experiment will test my overall reaction PH-wise to instant withdrawl from one of my meds. Said med changed my life physically, mentally and emotionally. I had a life again.

I am tied to a railroad track waiting for some hero to show up and rescue me.

One of the criteria for a rescue involves a 6 minute walk. Doctors, drug companies and the government use this test of endurance as a benchmark. Perhaps that measure works in a sense, but each PH'er has his own  achilles heel.

My last 6MW, I felt great. The tech checked my sats at each turn. My o2 fell to 79 after the first turn and continued there for 3/4 of the walk. The tech decided I needed to up my o2. I had to stop and figure out the settings, which were unfamiliar to me. I bet that took at least 2 minutes. I resumed the walk and after a short time, she said quit. Needless to say my numbers showed no improvement.

This test in no way measured the way the new med affects me and my PH. Yet part of the hangup with my med and getting approved for a grant, focuses on this number.

Bottom line for today. The company withholds my med until one of two actions take place.
  • No. 1 I contact them and set up a payment plan. ($18,000-$22,000 a month x 12 months = infinity)
  • No. 2 The company finally runs out of things to ask for and submits the information to the judgment panel.
In the meantime, Day 1.

My house has fallen apart in the past week. Stress laid me out.

Later, Dude.

Wednesday, August 24, 2011

End of an era

The last of the youngin's leaves Amarillo today. The two youngin's are special because they are the final ones. Ironically both will be together again, at least within shouting distance. I feel like a proud mom. I find it enduring that both kids would want to hang out with a couple of 60 someodd year old women. Speaking for myself, I had fun. Both kids will go far in this world. The electronic age makes continued contact possible, if indirect. So, have fun in your journeys youngin's; thanks for the memories.

I am my own healthcare advocate. I will fight to keep living. I will.

Tuesday, August 23, 2011

Good night Irene

Today mightly tried my patience. Not Tuesday per se, just circumstances. You see, an issue I thought was no longer an issue resurfaced. I have spent the past two days making telephone calls. I have spoken with several nice people but a call to a company's nurse finally got me some action. I hope the situation will be resolved tomorrow.

My stress levels measure off the charts lately. Not a good thing at all.

My friend who had the double lung transplant more than three months ago finally went home. She fights hard. The lungs work hard with no rejection. But what a journey to get to today.

I wonder if I am oxygen starving the creative side of my brain. Does that side of the brain die first?

What do you think, Dude?


Wednesday, August 17, 2011

Dry tears stain my face

I am having a hard time again. Things seem out of kilter. I am sad. I want to hide. I question the motives of everyone. I tell myself I must be a needy pest.

*Sigh* I miss you Dude.


Sunday, August 14, 2011

Sorry. I am only me.

Gloom permeates the air like the heavy perfume an old woman wears. I offer a kind word and somehow it comes out preachy. So nevermind folks. I am done.

Later, Dude.

Friday, August 12, 2011

Unwelcome guest

An old friend paid a visit the past couple of days. I woke up and there he was standing over me like a vulture over roadkill. The visit surprised me. He had not shown his face for a long time.

As usual, he started in on me. "No one cares," he whispered in my ear. "You disappear. So what?"

After that topic wore thin, he started in on my pulmonary hypertension. "You are not as sick as ____," he accused. "Why do you do nothing all day?"

Then comes the harsh voice as he hurls accusations at me like knives in a sideshow act. "You are ugly. No one likes you. You do not do enough for others."

After a few hours of my friend, I long for relief. Often I run to the bed. Cocooned in the covers, hoping I will no longer hear my friend, I seek the release of sleep.

Sometimes his screeching tone pushes me beyond what I imagined I could bear. The incessant cacophany of recriminations begins to wear me down.

I think I have the necessary gumption to send my visitor packing for now, but he hangs out on the corner just out of sight, hoping he can throttle me.

I miss you bunches, Dude. EPL begins Saturday.


Monday, August 8, 2011

Coming soon to the electronic gadget of your choice

Season three of EPL Spit Cup Fantasy League begins Saturday.

Wish you were here, Dude.


Sunday, August 7, 2011

Thanks and more thanks

Sometimes I have nothing to say.

I am thankful for patient people.

I am thankful for kindness.

I am thankful for living creatures to cuddle.

I am thankful for living.

I am thankful I caught a glimpse of you, Dude.


Saturday, August 6, 2011


Yesterday marked a big goal for your foundation, Dude. The first grants. You eased the load for four CFers. FOUR!!! I know indirectly at least one of them and I know you knew CFer X. I shared in the joy of the moment vicariously. A warm fuzzy feeling deep inside my gut.

I had a talk with the little actress as I drank coffee and listened to the world wake up this morning. I told her how I felt and imagined her responses. I said she no longer deserves to hang out in my thoughts. I released her from all deeds, imagined or not. Karma gets its due sooner or later.

EPL may or may not make this season, Dude.

My black eye fades, the cuts heal.

Later, Dude.

Friday, August 5, 2011

One of those days ...

Courtesy of bluebison.net

Later, Dude.

Wednesday, August 3, 2011

That's swell

Edema (formerly known as dropsy) afflicts most PHers at various times in our journeys. The control of the condition often falls on diuretics and limiting salt intake.

Before I got a diagnosis, I had elephant ankles and a not-so-cute belly during a particularly torrid August. The pavement sizzled and I could not get my feet into tennis shoes much less dress shoes.

That Saturday morning I sat in my chair with my legs propped up on the ottoman. Momo chased Pogo across my legs, his hind legs digging a hole in my bloated leg. I felt a sting and looked at the leg. Hmmm. No blood, just a pinkish liquid flowing from the gash. I covered the wound with a clean washcloth (Bandaids were too small and I had no gauze and tape.). I had a friend check the seeping slash. I needed stitches.

Off we go to the doc at the emergency clinic. Everyone I talked to from the receptionist to the doc wanted to see the wound and then asked how it happened. Mind you I still am not bleeding much.

I am told to lie on the examining table and doc would sew me up. Well, I heard doc talking to a patient with allergies and another who had a fever. In the meantime, pink fluid drips steadily from the gash.

Finally he enters. I can tell he probably has not sewn up anything since medical school. He hems and haws (pun intended) and finally realizes he has to do it. He told me to wait a week and then have my GP (or whatever they call them) remove the stitches.

During all this swelling, I got a diagnosis of COPD. The doc prescribed an inhaler. Then the day the pharmacist told me I could not get the prescription refilled for another week, I knew I was in trouble. You see, the COPD was bad, but PH stood behind it. I went back to my GP. He took X-rays, discovered my enlarged heart and referred me to my heart doc.

After an echo, the heart doc sent me to Doc. He eliminated various conditions, got my COPD under control, and after a right heart cath, put me on Tracleer, a pretty new medication at the time.

The rest, as they say, is history.

Dude, I think of you often. What you might say, how you never seemed to sleep.