Thursday, June 30, 2011

312 meters

Did the Doc thing this morning. He sprung the 6 MW on me. I walked 312 meters, which falls short of the last one. He said not to be too concerned. My sats fell to 76 on 2 lpm, so I stopped in the middle of the walk and tried to figure out how to boost the liters. Finished the walk with sats in the high 80s and doing 3 lpm. Doc told me o2 is the most important drug I can do to manage my PH.

We discussed Social Security and the hassles. SS did approve one of my three PH meds without too much hassle. I requested a refill on the Revatio in the last couple of days. Doc says that one should pass too because of its cost. Tyvaso continues to be hung up. Doc faxed a new letter to the panel yesterday. I bet I will hear something after the holiday.

Doc also told me about a new COPD drug the FDA just approved. He said I would not be a candidate for it. When I got home, I Googled and discovered the drug targets those with chronic bronchitis. I have emphysema.

I am afraid the U.S. women's world cup team faces several steam rollers. Our girls seem kinda whimpy or maybe too polite. Germany on the other hand fields big, tough women. The women's game has a ways to go to be as precise and beautiful, as say Barcelona. The matches do draw this Texan's attention, though. Helps to pass the time in the late mornings when the temperatures rise.

Time for some more pizza. I celebrated at lunch with Bella Pizza. I will have some more tonight. Yummm.
Later, Dude.

Wednesday, June 29, 2011

Willing suspension of disbelief

Stream of consciousness:

I feel myself heading for the hermit mode again. I wonder if this can be attributed to laziness. I once again find myself overwhelmed. Life comes at me and I want to duck. Then I crawl into a hole and hope to avoid everything. Only I cannot. My mind refuses to shut up. Then guilt revs its unrelenting engine. I wonder if I really have a disease. Am I blowing everything out of proportion? You know, think negative and negative comes to visit. Am I in denial? When the pressure weighs heavy, I crumble into dust in moments. Today I need to visit the PO, which means getting dressed, which means actually doing the projects, the reason for the PO trip in the first place. The low so far this morning -- 72. Does make getting out hard when the temperatures are in the 100s. Will Al Gore prove to be a voice in the wilderness? I just do not want to. Time keeps on slippin', slippin', slippin' into the future. Regina makes me smile. I do nothing. Later, Dude.

Tuesday, June 28, 2011

Twilight zone

Still no resolution to the insurance hassle. I get calls and letters telling me I need to resubmit paperwork, etc.

Later, Dude.

Thursday, June 23, 2011

Short and bittersweet

Dealing with pain commands lots of attention from PHers. If not the elephant on the chest, then aches from the meds that keep us alive. That description falls short of reality. List symptoms that push you over the threshold into torture, then you will understand.

A ray of sun dances across the makeshift birdbath like a flame flickers in the breeze. For a brief moment I felt your presence. I think of you often, Dude. The pain you endured. How you must have fought against allowing your body to rule your life.

Missing you, Dude.


Wednesday, June 22, 2011

Something to remember

Big discovery here: duh!! If I get my mind off my own problems and try to brighten someone's day, I feel better too.

Tuesday, June 21, 2011

Promises, promises

I am disappointed.

I try to live my life honestly. I try to follow the rules. I try to do what I say I will. I try to treat people fairly and the way I would like to be treated. I try to remember what goes round comes round.

After the mess that Medicare has afforded me so far, I say the great United States has let me down.

I now can understand why doctors refuse to accept Medicare. The docs and their staffs spend tremendous amounts of time with paperwork.

My doc spends much time with his patients; he is an exceptional doc. Yet he is now in a position to have to explain his diagnosis. Yes, I do need the PH meds. Just because I have COPD does not mean that the COPD caused the PH; it means I have both.

The stress this causes only makes my condition worse. And to add the cherry to the sundae, Medicare does not pay for Xanax. Talk about fertile ground for a panic attack. I will have to face that little dilemma pretty soon, too.

All this amounts to a government panel deciding which meds I need based on something in a book. They do not know my history. No one fits into the mold.

 PH is a rare disease. The experts know a fews facts about PH, but even those change as scientists and doctors uncover more. So I wonder if they employ the most up to date book for their assessments?


I know you understand only too well, Dude.


Monday, June 20, 2011

It may rain daffodils

"Dear Maintenance Gurus,
"Could I please have water in my backyard today?
"Cindy, No. ????"

I left that note on the apartment office door early, early this morning. I started watering my yard about 9:30. Maybe my imagination flourishes but the grass does seem greener. The birds seem happier as well.

Must be nap time. Surely it is nap time. It is!!! It is!!!

Later, Dude.

Saturday, June 18, 2011

Red tape blues

Accredo called yesterday about my next Tyvaso shipment. I took care of the usual questions and then explained about the hangups last time and asked about the progress of the next shipment. I then talked to an Accredo insurance person and she says my doctor needs to resubmit his letter explaining why I need Tyvaso. She said she expects to hear from Doc the first of the week and then a decision will be made.

I called Doc's nurse to ask about all this and to have them fax a copy of my sleep study to my new DME company. The company would not issue a new CPAP mask and hose without proof I have sleep apnea.

The nurse said Doc plans to work on the letter over the weekend and then fax it to whichever place it needs to go. She said she thought they (whoever they are. I lost track of the Tyvaso trail a couple of weeks or so ago.) required scientifically worded proof. Apparently a right heart cath and a whole slew of echoes and PFTs were not enough evidence to convince the panel of docs that my PH is primary, not caused by COPD.

Trying to find ones way through the maze of bureaucracy proves futile. I just wonder why, when I had regular insurance, the diagnosis drew not a question. They shipped the meds to me for about 7 months. I felt better and could do more. PH days became the exception not the norm.

When I moved to Social Security, suddenly the meds are not needed. When I am short of breath, "the COPD acts up not the PH." All this despite two right heart caths and pressures high enough to fall in the severe zone before I began the Tyvaso. The last echo I had indicated my pressures had fallen by half. Yet the panel of docs refuses this as evidence. My Tracleer and Revatio gain the OK, so why not Tyvaso?

The panel sits at a table with a checklist beside each member. If the document they judge does not answer their set-in-stone questions, then the diagnosis must be wrong. How can they say that?

If the letter Monday does not convince the panel, then I am no longer willing to fight. The uncertainty eats at me. I cannot let "them" take peace from me.

I wonder how many other of your friends would love some of your wisdom? I miss you Dude.


Friday, June 17, 2011

A cheap lesson

People fascinate me. From the Walmart crowd to the folks who tell all on FB, I would love a peek inside their heads. Some guys have control issues; others seem to live in a goody-two-shoes world where one answer covers all woes. Some fit the description of all hat and no cattle. Some friends apply caution to extremes; others do not know that definition.

People with their foibles add spearmint to the gum. Want to know a secret? If you keep your own mouth closed, you will learn about someone else faster. Cultivate listening. You will earn priceless rewards. You will learn you are not alone.

Falling into the "Oh woe is me" trap happens without effort and often without awareness. If you want to change your life, try changing someone else's anonymously.

OK, enough CL's philosophy for one session.

I still remember, Dude.


Thursday, June 16, 2011

Of me and chores

Today I did chores, though not willingly.

I got paranoid that I might make myself sick if I lay around all the time. I slept most of the day yesterday. I cannot afford a hospital visit, so, dragging one foot behind the other for the first hour or so, I made myself work. I took mini-breaks. The longer I worked, the more breaks I needed. Dusting fell by the wayside. I decided to take a shower instead. Now I will coddle my clean body on clean sheets.

The Bruins won the Stanley Cup with lots of drama and excitement. I can feel the pride of Bostonians all the way here. You and the city deserve the win.

I think I may take a nap. I deserve it, huh?

Later, Dude.

Monday, June 13, 2011

Hollow woman

I spent the better part of my day feeling empty. My world shrinks. I am not interested. Since the water issue remains unresolved, I find myself indifferent to a lawn and flowers. Even the birds seem not to care. Maybe offerings two yards over easily top the seed I specially bought for them.

Third day in a row I am worthless.



Friday, June 10, 2011

Trying to learn tweet

I cracked the blinds in the bedroom just now. A herd of birds foraged for seeds I threw out this morning. And ..... two drank from the bath. Big progress. I am super excited because I now have water in the backyard, so maybe next year a real flowerbed and grass. This year I want to remove the weeds while encouraging the grass to grow. If a few of the wildflowers come up, all the better.

One of my PH friends died this morning. She had PVOD or pulmonary veno-occlusive disease. She went to many transplant clinics in hopes of extending her life. All the clinics told her she was too sick. She decided four days ago to withhold all meds except o2 and those for pain. Though I did not know her well, we talked several times on FB. She had children and other family. RIP Cheryl.

I did not do too much today and I am worn out. A couple of friends and I went to Olive Garden for lunch. I got some rolled up lasagna with 20 million kinds of cheese inside and marinara sauce with even more cheese.

Afterward we went to a girly-girly place to look for some earrings. All those rhinestones!! and in gosh awful colors. Lime green handbags as big as a miniature pony and featuring, what else, rhinestones. I about got girly-girled to death.

Missing ya, Dude.


Wednesday, June 8, 2011

You get what you give

I am a firm believer in pay it forward. What goes around comes around. You reap what you sow. I have witnessed the truth in those adages time and again. The trait mirrors ones soul.

Four organizations that help people facing not only a deadly disease but a financial crisis work this principle. In my opinion, the groups deserve whatever help we can give. Each of us must decide how to pay it forward. There are countless ways, some that cost nothing but time or alertness on our part.

Giving has an added benefit -- joy for the giver.

Below are the links to the organizations which I feel deserve our help. Choose these or ones that are close to your heart.

Tuesday, June 7, 2011

Nothing special

Today I find myself watching the clock. I took a midday nap and now I am waiting for an acceptable time to go to bed. A clock somewhere must show bedtime.

My youngest godson mowed and raked my little yard yesterday. Now, not a sign of green. Lots of dirt and brown. Rain or water would make a big difference. I asked the manager about getting some water hooked up and he said after the hot tub gets fixed.

A young male robin visited to get a nibble of something today, but did not get close to the water. I may need to move the dish further away from the window. The marigolds are indeed merry. Lots of new buds and several flowers. They live!!!

Curious describes the young man and/or couple upstairs. He tells me his name, Anthony, after he rang my doorbell to get his shirt, which had blown off the balcony into my yard. His girlfriend, Kate, looked as if she were sleepwalking but offered her hand to shake.

The next time Anthony rang my doorbell, he says he has no key to the apartment. Could he try to get on the balcony and enter his apartment? I led him through my apartment and let into my backyard. He actually ran and grabbed the balcony rail and pulled himself up. Not bad for a 5'5" or so guy.

I can hear Anthony walk around upstairs night and day. He seems never to leave the apartment. I seldom hear music or television. His car, a Honda, has expired licensed tags and inspection sticker. The back axle bends at a nondrivable angle.

One effect of isolation -- when I talk to a live human, either via phone or in person, I find myself with a bad case of blabbermouth. I cannot shut it up. I imagine insurance people, etc., run into cases of this sort all day long. I am sure they get aggravated. One day they may understand.

I miss you so much Dude.


Monday, June 6, 2011

Cherry baby

Cherries make summer special. Eating one leads to another and another. I am definitely a bing fan, the darker, the sweeter, the better. When I can buy cherries, I do not need cookies, candies and cakes.

Later, Dude.

Sunday, June 5, 2011

What I saw, says I

The next door kitty sports faultless camo. If he remains still, even Momo does not spy him. My yard must seem like a jungle to him and the grass must taste better. You know, unspoiled laxative/hairball remover nature's way.

As for the birds, they did not fall for the bath bait. I may try elevating the pool.

I had one of those "what was I thinking" moments today. I did a bit of pickup around the apartment this morning. Did some sweeping. Then made a trip to the grocery. I had the carrots and potatoes peeled and was chopping them for cooking when WWIT crossed my mind. Sometime during all this, I ran out of gas. So I am cooking the rest of the meal on fumes and hope I have enough left to eat the meal.

Another restless one. Tried the couch. Up because I could not relax. Tried toast and Diet DP.

I have a FB friend who, from my end of it anyway, used me to carry them through a crisis and then quit communicating once the crisis resolved. I heard plenty of excuses: busy, children, appointments, work, you name it, I heard it. I struggle to cut losses.

Later, Dude.

Saturday, June 4, 2011

¡Ay, caramba!

I can hear you now. "See. I told you they should have gotten rid of Bradley." Yeah, yeah. Just a friendly. Half the U.S. side rested or were hurt. Yeah, yeah.  The same could be said for Spain's side. All the countries prepare for the qualifiers. Lots of exciting soccer.

I felt pretty awful the past few days. Stress does that to you. The apartment falls around my ears. Amazing how quickly neat and tidy becomes disaster city. Cooking gives way to aimless staring in the refrigerator and cabinets.

I lie on the couch and find myself up in a minute or two to .....

feed one or both cats.

get something to drink.

turn on the air conditioner.

turn off the air conditioner.

see if what I crave magically appeared.

Then I lie down. In a few minutes, the cycle starts over.

Speaking of which ....

Later, Dude.

Friday, June 3, 2011

Hearts to Ms. Ivey

The past couple of days I have used my portion of patience for the next six months. I talked to 17 people, some of them more than twice. I am up to my lookieballs, as one of my FB friends says.

I think for the time being, issues and solutions match up. The manufacturer of Tyvaso, United Theraputics, covers the cost of this month's med. I should receive it today. J. works with my doc's nurse to see if I qualify for more assistance. I. of Caring Voices Coalition helped to facilitate that. She also submitted paperwork for help with my Tracleer. I should hear about that soon. She also narrowed the field for Medigap companies. She will send me the best couple of choices.

Doc will work to convince Medicare to pay for Tyvaso under Part B.

All the stress causes me to implode. I need to make a trip to the catfood store today. Pogo got all the questionable chicken, so no chicken and alfredo. Momo has no crunchies, either. Oh woe!! (mostly to me).

Though the plants have no blooms right now, the buds prepare to unfold soon. I actually caught a sparrow bathing, though I scared it so, it may not return. K sent me some tempting bird treats to try to lure a few dirty birds.

Miss you, Dude.