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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

That's it

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

Nothing more, Dude.
Later.

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.

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.



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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.