Apparently the folks who program my scale for the heart failure thing think last night was "fall back" time. Not the best way to start my day.
I slept from 3 to 7 yesterday, took my meds and went back to bed. I guess I needed some rest, though I did nothing to warrant a long nap. In the aches and pains category, the joints in my fingers hurt frequently. They joined the complaint department before the Tyvaso. Must be age and all that typing throughout my career.
Accredo added another couple of questions to the drill when you reorder. The company must fear lawsuits as I am sure most drug companies do. However, PHers have little choice. Only a couple of companies make PH meds.
I agree with the call for a watchdog group for the drug companies, but I do not have much faith that such an organization would not align itself with the very company it is charged to watch. When business got big, the consumer got lost. I fear, like Pandora learned, you cannot put it back in the box.
The boys crashed after eating for the third time in 2.5 hours. Ah the life.
I still miss someone, Dude.
Later.
Sunday, October 31, 2010
Saturday, October 30, 2010
Friday, October 29, 2010
Power of the people
Though today people cast their votes in various races, the headline of this blog post has nothing to do with elections.
A stalwart friend has stepped forward to support Sylvia after her transplant. If the Pulmonary Hypertension Association had a fund for things like air travel, more of us would go to support our fellow PHers when they need help. I know I would if I could. I do not have a family to tie me down or keep me from helping for a week to give caregivers a break.
Many of you who knew B. knew he died because he had inadequate support, so never could quality for a transplant. He was young.
The PHA does offer lots of needed services, I just think an additional one could save lives.
We the PHers and those who are caregivers should let the PHA know that a fund to help us help ourselves is important.
Later.
A stalwart friend has stepped forward to support Sylvia after her transplant. If the Pulmonary Hypertension Association had a fund for things like air travel, more of us would go to support our fellow PHers when they need help. I know I would if I could. I do not have a family to tie me down or keep me from helping for a week to give caregivers a break.
Many of you who knew B. knew he died because he had inadequate support, so never could quality for a transplant. He was young.
The PHA does offer lots of needed services, I just think an additional one could save lives.
We the PHers and those who are caregivers should let the PHA know that a fund to help us help ourselves is important.
Later.
Thursday, October 28, 2010
Now serving envy
I am doing something for a week that many music lovers would dearly love to do. I have been selected to participate in the Arbitron Radio Ratings, the Nielsen of radio if you will.
One keeps a diary of the times and types of music shows, etc., one listens to. Also included are Internet music sites, i.e., Pandora. I wonder if reading about the shows on the radio counts? Hmm. I guess not. Too bad, I am friends with The Eagle on FB.
The Eagle plays my generation's music, 1960s-'80s.
http://www.youtube.com/watch?v=zqfFrCUrEbY
I sat in the car this morning while Connie did some errands. She went into a party story for a card. There are various types of stores along this strip mall. I sat and guessed which stores the people were going into. One of the stores fits a category I call foofy. The store sells hair do-dads, necklaces, sunglasses, etc. My guesses for that store were 100 percent accurate. Ha!
I noticed the Pathlight (PHA magazine) has gone slick. Previous issues were printed on heavy stock paper, but no color photos, etc. Now heavy stock slick color pages. I hope the next step is design. The cover of the magazine this time was awful. And I am sure some money must be coming in because the printing of this type of magazine does not come cheap. I realize you need to spend money to make money, and recognition serves a purpose. I am not sure being the next hip disease will contribute to its cure any faster.
I hope the organization does not forget the patient in the process of growing.
Sound familiar, Dude?
Later
One keeps a diary of the times and types of music shows, etc., one listens to. Also included are Internet music sites, i.e., Pandora. I wonder if reading about the shows on the radio counts? Hmm. I guess not. Too bad, I am friends with The Eagle on FB.
The Eagle plays my generation's music, 1960s-'80s.
http://www.youtube.com/watch?v=zqfFrCUrEbY
I sat in the car this morning while Connie did some errands. She went into a party story for a card. There are various types of stores along this strip mall. I sat and guessed which stores the people were going into. One of the stores fits a category I call foofy. The store sells hair do-dads, necklaces, sunglasses, etc. My guesses for that store were 100 percent accurate. Ha!
I noticed the Pathlight (PHA magazine) has gone slick. Previous issues were printed on heavy stock paper, but no color photos, etc. Now heavy stock slick color pages. I hope the next step is design. The cover of the magazine this time was awful. And I am sure some money must be coming in because the printing of this type of magazine does not come cheap. I realize you need to spend money to make money, and recognition serves a purpose. I am not sure being the next hip disease will contribute to its cure any faster.
I hope the organization does not forget the patient in the process of growing.
Sound familiar, Dude?
Later
Final hurdle
A friend posted a quote on her blog which essentially said live your life as if you would have to repeat every sigh, every word over and over. Kind of a "Groundhog Day." At the end of your life, would you be glad to do it all over again exactly the same? Something to ponder. Something I wish I knew earlier in my life. Too bad wisdom comes after the need of it is so great.
I have a friend who needs a lung transplant. She has jumped through all the hoops. Essentially the only problem delaying the life-giving surgery remains something I cannot do. She needs physical support for the six weeks or so after the operation. Too bad a group of sister PHers could not go and support. Or even better, PHA provide trained support for anyone who needs it.
After the final treatment yesterday, the muscles in my upper arms and the knee joints ached. I finally took two 500 mg Tylenol and my usual Xanax. Really, the sides I face are nothing. We shall see what happens after I increase for the final time.
With anonymous good deeds, you have to trust that the actions turned out well. You do not have the benefit of seeing the reactions.
Thanks for being my friend, Dude.
Later.
I have a friend who needs a lung transplant. She has jumped through all the hoops. Essentially the only problem delaying the life-giving surgery remains something I cannot do. She needs physical support for the six weeks or so after the operation. Too bad a group of sister PHers could not go and support. Or even better, PHA provide trained support for anyone who needs it.
After the final treatment yesterday, the muscles in my upper arms and the knee joints ached. I finally took two 500 mg Tylenol and my usual Xanax. Really, the sides I face are nothing. We shall see what happens after I increase for the final time.
With anonymous good deeds, you have to trust that the actions turned out well. You do not have the benefit of seeing the reactions.
Thanks for being my friend, Dude.
Later.
Wednesday, October 27, 2010
Tuesday, October 26, 2010
Just do it
A friend posted an innuendo about friendship on FB. No names, but I take on the guilt.
I never learned about conflict. Growing up I never heard an argument at home. I do not own a personality that thrives on persuasion and debate. I say OK just to end a confrontation. So the remark on FB makes me wonder what I have done. In my heart, I know I have done nothing.
Sometimes I dwell in the what if. Although fun, you can get into trouble by vacationing there too often. In reality, what if does not exist. Instead of what ifs, you have did thats. At the end, I hope your did thats leave you peaceful.
Connie heads to Lubbock to go to a rheumy. I sure hope he puts her on some regular pain-type meds. She wears herself out.
No celebrations, Dude.
Later.
I never learned about conflict. Growing up I never heard an argument at home. I do not own a personality that thrives on persuasion and debate. I say OK just to end a confrontation. So the remark on FB makes me wonder what I have done. In my heart, I know I have done nothing.
Sometimes I dwell in the what if. Although fun, you can get into trouble by vacationing there too often. In reality, what if does not exist. Instead of what ifs, you have did thats. At the end, I hope your did thats leave you peaceful.
Connie heads to Lubbock to go to a rheumy. I sure hope he puts her on some regular pain-type meds. She wears herself out.
No celebrations, Dude.
Later.
Monday, October 25, 2010
Everywhere signs
The 62 mph wind followed this weekend by a freeze surely will mark the end of our only slightly colorful fall. Nature must not feel well because she dons gray today. Zane asked where the sun was, he could not find it anywhere. I told him the sun was napping. By the time Connie dropped me back at the house, Zane also was napping.
I sat in the car with Zane while Connie ran in to a couple of stores. All of us went into the grocery. I got some sale items and some veggies and grapes. I am going to make a concerted effort to eat more healthy. I feel better when I do.
The cats both snooze right now. I think I will join them.
Winter never has been a favorite of mine, Dude.
Later.
I sat in the car with Zane while Connie ran in to a couple of stores. All of us went into the grocery. I got some sale items and some veggies and grapes. I am going to make a concerted effort to eat more healthy. I feel better when I do.
The cats both snooze right now. I think I will join them.
Winter never has been a favorite of mine, Dude.
Later.
Sunday, October 24, 2010
The core
Today I honor the core of women who started me along the path of pulmonary hypertension education. Each of the 15 or so women offered encouragement and a listening ear. These are the women who welcomed me to chat.
In the PH world, death hangs around. Of my core group, death has claimed only one. Racheal. To lose just one in the five years I have been diagnosed beats the odds to hell. Oh, there have been many deaths over the years, just none of the core. TW and Mason, if women, would be in the core. They are gone.
There are others, of course. Way too many. But there are success stories as well. Cheryl got new lungs and thrives. New medicines help others.
The core represents an amalgam of personality, education, age and income. PH drew us together as only a rare, life-threatening disease can. A fraternity no one wants to join but oh so necessary. The core shares woes and successes, aches and side effects, children and grandchildren, parents and pets.
Each PH newbie gathers a core. Someone who reaches out and says, "I have been there. Let me tell you what I do."
So, thank you.
Later.
In the PH world, death hangs around. Of my core group, death has claimed only one. Racheal. To lose just one in the five years I have been diagnosed beats the odds to hell. Oh, there have been many deaths over the years, just none of the core. TW and Mason, if women, would be in the core. They are gone.
There are others, of course. Way too many. But there are success stories as well. Cheryl got new lungs and thrives. New medicines help others.
The core represents an amalgam of personality, education, age and income. PH drew us together as only a rare, life-threatening disease can. A fraternity no one wants to join but oh so necessary. The core shares woes and successes, aches and side effects, children and grandchildren, parents and pets.
Each PH newbie gathers a core. Someone who reaches out and says, "I have been there. Let me tell you what I do."
So, thank you.
Later.
Saturday, October 23, 2010
I will sleep when I die
I sit staring at the screen, mesmerized by the blinking cursor. My imagination works overtime.
I think about you and your family. Funny, how with little information, I formed an image. Slowly details drift into the picture. Then my perceptions change and another scene takes its place.
I realize how special your friend was to you and now she extends that friendship to me. I begin to see a whole other life of yours. I feel special because I somehow have been admitted into the inner circle. (At least that is my perception.) I question the importance of this. Why does it matter so to me? Because in part, you still are here. I learn more about you by knowing the influences of your life.
Guess what? That only serves to endear. You were a blessing. Oh, you also had your moments of turmoil and angst, quite public ones at that. I can understand reaching out that way because isolation fosters ingenuity.
What would I do if I were given an extension of life but the reprieve came with strings: spending most of that time alone? How would I feel if someone took my trust, tore it into tiny bits and threw it back in my face? How would I react if someone tore my heart out by the roots?
One of these days, Dude.
Later.
I think about you and your family. Funny, how with little information, I formed an image. Slowly details drift into the picture. Then my perceptions change and another scene takes its place.
I realize how special your friend was to you and now she extends that friendship to me. I begin to see a whole other life of yours. I feel special because I somehow have been admitted into the inner circle. (At least that is my perception.) I question the importance of this. Why does it matter so to me? Because in part, you still are here. I learn more about you by knowing the influences of your life.
Guess what? That only serves to endear. You were a blessing. Oh, you also had your moments of turmoil and angst, quite public ones at that. I can understand reaching out that way because isolation fosters ingenuity.
What would I do if I were given an extension of life but the reprieve came with strings: spending most of that time alone? How would I feel if someone took my trust, tore it into tiny bits and threw it back in my face? How would I react if someone tore my heart out by the roots?
One of these days, Dude.
Later.
Friday, October 22, 2010
A PH day
Yesterday I needed to retrieve my car from the shop, but I did not. I needed to wash dishes and got as far as filling the sink, adding the soap and the dishes. The dishes sit in a sink full of cold, yucky water. About all I did yesterday was eat and lie on the couch. Oh yes, and I am out of lasix and have been for a couple of days. I have gained 3 pounds the last two days. My bad.
Usually, for PHers, a change in medicine means a change (at least temporarily) in lifestyle. This new med keeps me close to a potty -- at least for an hour or so after doing a treatment. This may change after my body adjusts to the medicine, or it may not. A small window of time exists between the side effects subsiding and the next treatment. By the end of the day, the window closes as soon as I put down the neb.
Nutrition finds its way into my collection of woes. Nothing sounds good to me. I go stare at the food in the cabinets and refrigerator. Nope, nothing I want there. Eventually I get so hungry I grab a cookie or two or some crackers or chips. The very foods that make me feel worse. Side effects also exert themselves into eating. I cannot eat too soon after a treatment. I cannot eat too much before treatments. So a small window for eating as well.
Oh yes, and another problem. The sadness smacks me in the face again. I feel like I am covered in goo. I try to wipe the muck off but nothing happens.
Yesterday a few folks unknowingly threw me a lifeline. Thanks guys. I possess a long memory.
We have become such an electronic society. Soon, I fear, people will lose the joy of opening an envelope and reading a handwritten letter. The effort alone says "I care."
An email has no sense of touch to it. Somehow knowing that card was chosen by the sender, held in his hands, brings a closeness not realized with a text message or even an electronic "card." That the sender spent the time to write by hand says much about him and his opinion of you.
Dude, anniversaries.
Later.
Usually, for PHers, a change in medicine means a change (at least temporarily) in lifestyle. This new med keeps me close to a potty -- at least for an hour or so after doing a treatment. This may change after my body adjusts to the medicine, or it may not. A small window of time exists between the side effects subsiding and the next treatment. By the end of the day, the window closes as soon as I put down the neb.
Nutrition finds its way into my collection of woes. Nothing sounds good to me. I go stare at the food in the cabinets and refrigerator. Nope, nothing I want there. Eventually I get so hungry I grab a cookie or two or some crackers or chips. The very foods that make me feel worse. Side effects also exert themselves into eating. I cannot eat too soon after a treatment. I cannot eat too much before treatments. So a small window for eating as well.
Oh yes, and another problem. The sadness smacks me in the face again. I feel like I am covered in goo. I try to wipe the muck off but nothing happens.
Yesterday a few folks unknowingly threw me a lifeline. Thanks guys. I possess a long memory.
We have become such an electronic society. Soon, I fear, people will lose the joy of opening an envelope and reading a handwritten letter. The effort alone says "I care."
An email has no sense of touch to it. Somehow knowing that card was chosen by the sender, held in his hands, brings a closeness not realized with a text message or even an electronic "card." That the sender spent the time to write by hand says much about him and his opinion of you.
Dude, anniversaries.
Later.
Thursday, October 21, 2010
A Tennessee Ernie Ford type of day
Today I am reeling a bit. Not sure what this means yet.
My Tyvaso came with the handiest carrying case/purse. The neb, case for parts and cord fit neatly in the main compartment. The black Samsonite bag also has room for keys, money, pens, cell phone, etc. Though not Judith Leiber (see photos), the tote reminds me of those late-night TV commercials for the miracle purse, or some such. You know the one. The announcer touts the ability to carry a case of diet DP, etc., etc., as a model neatly stows the objects away.
My Wal-Mart $4 purse has about seen its last days
. Maybe the time is right for a move into a new objects carrier. I will need to start toting my neb with me. I get real SOB if I go beyond the regularly scheduled treatment time, something I need to discuss with Doc.
Connie tells me she sees a great improvement since I started the Tyvaso. I cannot really tell. Some days the sides kick my butt. Mainly the muscle and joint aches. So far, Tylenol handles that pretty well, though I hate to take it because of the Tracleer and Revatio. Oh what a balancing act we live.
The big hoo-ha approaches faster than one might think. Plans are outlined. Go team! Dream big.
Well, Dude. Such as it is.
Later.
My Wal-Mart $4 purse has about seen its last days
. Maybe the time is right for a move into a new objects carrier. I will need to start toting my neb with me. I get real SOB if I go beyond the regularly scheduled treatment time, something I need to discuss with Doc.Connie tells me she sees a great improvement since I started the Tyvaso. I cannot really tell. Some days the sides kick my butt. Mainly the muscle and joint aches. So far, Tylenol handles that pretty well, though I hate to take it because of the Tracleer and Revatio. Oh what a balancing act we live.
The big hoo-ha approaches faster than one might think. Plans are outlined. Go team! Dream big.
Well, Dude. Such as it is.
Later.
Wednesday, October 20, 2010
Tuesday, October 19, 2010
Play ball!
I love day baseball. Growing up, there was no World Series at night. The game truly held the title of America's Pastime. I listened with about 27 other seventh-graders to a radio broadcast in Coach Glascock's science class. The class followed lunch. We sat at black lab tables with tiny sinks and gave the radio the attention we never gave Coach.
Today I get the chance to see day World Series baseball. The Rangers may be that team of destiny you always hear about. The cinderella story, David and Goliath. The series we listened to so raptly as kids also featured the Yankees.
Fans employ the claw and the antlers to rally the Rangers. Fun stuff, a team. No giant egos, just scrappy. Doing what baseball should do.
I feel as if I am in a void. I coast through the minimum daily requirements in neutral. 3 o'clock, time for meds. Noon, I must be hungry. The next day when I get up, I can offer no detailed account of my day. Washing dishes amounts to the only constructive chore I do.
I need to get out of this self-centered, wallow in the self-pity trough I am mired in. Some fight so hard to have life. I should learn to appreciate mine.
I miss you, Dude.
Later.
Today I get the chance to see day World Series baseball. The Rangers may be that team of destiny you always hear about. The cinderella story, David and Goliath. The series we listened to so raptly as kids also featured the Yankees.
Fans employ the claw and the antlers to rally the Rangers. Fun stuff, a team. No giant egos, just scrappy. Doing what baseball should do.
I feel as if I am in a void. I coast through the minimum daily requirements in neutral. 3 o'clock, time for meds. Noon, I must be hungry. The next day when I get up, I can offer no detailed account of my day. Washing dishes amounts to the only constructive chore I do.
I need to get out of this self-centered, wallow in the self-pity trough I am mired in. Some fight so hard to have life. I should learn to appreciate mine.
I miss you, Dude.
Later.
Monday, October 18, 2010
Just wanted to say
I discovered over the past couple of days the pain of your death lessens. Knowing this incites a whole menu of emotions. Shame for letting your memory fade. Hurt that I no longer hurt. Fear that I will forget. Lost.
I still am in awe that you could sear yourself on my heart so easily. I often wonder if you knew the charm you possessed. I know I was not the first drawn to your light.
I still smile when I think of you. That counts.
Later.
I still am in awe that you could sear yourself on my heart so easily. I often wonder if you knew the charm you possessed. I know I was not the first drawn to your light.
I still smile when I think of you. That counts.
Later.
Sunday, October 17, 2010
Old friends
http://www.youtube.com/watch?v=rHJNCSu3mI4&p=29B9BC1E79AC6367&playnext=1&index=15
Connie and I make good friends because she cannot sit still and I cannot get moving. Together we manage to get the job done.
Her body rebels with arthritis, mine with breathing woes. She pushes through her pain and treats taking her medicines like a religious rite.
She has problems getting numbers inverted and thinks computers are beyond her, yet she operates her remote for dish television. I use the computer all day long, but had to have help programming my remote.
Connie sees through people like they wear transparent clothes. I project goodness onto everyone; it takes me awhile to see the warts.
Connie would do anything for people. She saves her change to make a contribution to the local homeless shelter. She saves cans. With that money, she contributes to a church in the inner city which feeds children.
I enjoy brightening up people's days, preferably anonymously. I get more joy out of the experience than they do. Therefore am I selfish when I give to others? It would appear so.
Looks like I will make today a couch day.
Busy season, Dude.
Later.
Connie and I make good friends because she cannot sit still and I cannot get moving. Together we manage to get the job done.
Her body rebels with arthritis, mine with breathing woes. She pushes through her pain and treats taking her medicines like a religious rite.
She has problems getting numbers inverted and thinks computers are beyond her, yet she operates her remote for dish television. I use the computer all day long, but had to have help programming my remote.
Connie sees through people like they wear transparent clothes. I project goodness onto everyone; it takes me awhile to see the warts.
Connie would do anything for people. She saves her change to make a contribution to the local homeless shelter. She saves cans. With that money, she contributes to a church in the inner city which feeds children.
I enjoy brightening up people's days, preferably anonymously. I get more joy out of the experience than they do. Therefore am I selfish when I give to others? It would appear so.
Looks like I will make today a couch day.
Busy season, Dude.
Later.
Saturday, October 16, 2010
Sugar, sugar
The boys got an extra special treat tonight. I had a cup of caramel turtle cheesecake ice cream. The richness began to overwhelm me, so the boys got a goodly portion, especially for cats. Pogo ate his fill and then Satchmo approached the dish. He sniffed and then took a tentative lick. Neither ate much. Guess we all overdosed on sugar.
My soccer side sucks. What more can I say?
Sorry, Dude.
Later.
My soccer side sucks. What more can I say?
Sorry, Dude.
Later.
Friday, October 15, 2010
Just me again
The muscles in my arms and legs ached all day yesterday. I refrained from overloading on the Tylenol, but finally about 8:30 last night, I took a couple. I was freezing and having a hard time going to sleep. The Tylenol did the trick.
Today the ache returns along with the chills. I have a call in to Doc. I want to know how much Tylenol I could take in 24 hours without hurting my liver. I am hoping whatever causes me to feel this way will disappear over the weekend. I told the nurse I would call again Monday if the symptoms continue. She will check with Doc and let me know. I can take 650 mg three times a day. (She just called back.)
My last bloodwork showed I am vitamin D deficient, so now I have to take 50,000 IUs once a week for six weeks. My health reminds me of that arcade game in which you use a mallet to try to hit objects popping up. Take care of one ailment and another pops up.
I am sorry if what I write disturbs people or makes them not want to be around me. I am me, probably for the first time in a great while. You could interpret this blog as a cry for attention. That would be true. I feel so alone at times. Something all people go through. Physical affects mental as well. I am sad again.
Crazy, Dude.
Later.
Today the ache returns along with the chills. I have a call in to Doc. I want to know how much Tylenol I could take in 24 hours without hurting my liver. I am hoping whatever causes me to feel this way will disappear over the weekend. I told the nurse I would call again Monday if the symptoms continue. She will check with Doc and let me know. I can take 650 mg three times a day. (She just called back.)
My last bloodwork showed I am vitamin D deficient, so now I have to take 50,000 IUs once a week for six weeks. My health reminds me of that arcade game in which you use a mallet to try to hit objects popping up. Take care of one ailment and another pops up.
I am sorry if what I write disturbs people or makes them not want to be around me. I am me, probably for the first time in a great while. You could interpret this blog as a cry for attention. That would be true. I feel so alone at times. Something all people go through. Physical affects mental as well. I am sad again.
Crazy, Dude.
Later.
Thursday, October 14, 2010
My life
When Connie calls me, which shes does almost daily, she asks if I have talked to anyone. I tell her no most days. That includes Internet chat. She asks if I know anything. I say no. I am sure she worries about me. I tell her not to, I am fine, but I do not think she believes me.
I hide more and more. I do not want to die but I apparently do not want to live either. So I exist.
I exist to feed Pogo 20 times a day. I exist to scoop poop and clumped pee. I exist to play FT on FB. I exist to take medicine on a schedule. I exist to lie on the couch and fall asleep. I exist to wear a gown all day and night. I exist to eat, although sometimes I do not find anything I want. I exist.
You were right, Dude.
Later.
I hide more and more. I do not want to die but I apparently do not want to live either. So I exist.
I exist to feed Pogo 20 times a day. I exist to scoop poop and clumped pee. I exist to play FT on FB. I exist to take medicine on a schedule. I exist to lie on the couch and fall asleep. I exist to wear a gown all day and night. I exist to eat, although sometimes I do not find anything I want. I exist.
You were right, Dude.
Later.
Wednesday, October 13, 2010
Post toasties
I dillydally instead of writing. Today may turn into one of those days.
My arm aches some because of the flu shot. The pain will go away quickly compared to what the flu would do to my body. I have been exercising that arm by playing FT. Now the game becomes medicinal. Ha.
Some of my PH friends remember the exact date they were diagnosed and others recall the dates they received medicine and felt better. I do not. I remember gasping for air by the mailboxes at work. I also remember my feet were so swollen I could not get my tennis shoes on. I once took my mom to the doctor and I had to stop the car to catch my breath after maneuvering out of a tight parking spot.
Once Doc diagnosed me and I got medicine, I sort of forgot the PH for awhile. Oh, I read all sorts of web sites, but I was busy and felt better, so ... My block anything bad mind did just that. Finally, 10 days in the hospital with pneumonia convinced me how bad I was. Being pretty stupid as well, I went to my PCP and he was the admitting doctor. He almost killed me. He ranks up there as a good guy, but a PCP nonetheless.
A visit to Doc's office for a checkup always lifts me. He treats me as an equal although I know he gets a little irritated with me. He explains everything I ask. The whole staff exemplifies what a well-run office should be.
I am sorry dear friends if I continue to hide. The reasons are many, none of which fall on your shoulders. I am heartened by your notes and posts. I would not blame you at all if you stopped.
Dude, you know.
Later.
My arm aches some because of the flu shot. The pain will go away quickly compared to what the flu would do to my body. I have been exercising that arm by playing FT. Now the game becomes medicinal. Ha.
Some of my PH friends remember the exact date they were diagnosed and others recall the dates they received medicine and felt better. I do not. I remember gasping for air by the mailboxes at work. I also remember my feet were so swollen I could not get my tennis shoes on. I once took my mom to the doctor and I had to stop the car to catch my breath after maneuvering out of a tight parking spot.
Once Doc diagnosed me and I got medicine, I sort of forgot the PH for awhile. Oh, I read all sorts of web sites, but I was busy and felt better, so ... My block anything bad mind did just that. Finally, 10 days in the hospital with pneumonia convinced me how bad I was. Being pretty stupid as well, I went to my PCP and he was the admitting doctor. He almost killed me. He ranks up there as a good guy, but a PCP nonetheless.
A visit to Doc's office for a checkup always lifts me. He treats me as an equal although I know he gets a little irritated with me. He explains everything I ask. The whole staff exemplifies what a well-run office should be.
I am sorry dear friends if I continue to hide. The reasons are many, none of which fall on your shoulders. I am heartened by your notes and posts. I would not blame you at all if you stopped.
Dude, you know.
Later.
Tuesday, October 12, 2010
So far, so good
Doc said I sounded good and though objective, he said my pulmonary artery sounded better to him.
We talked about PH. He said PH nears the stage it no longer can be classified as an orphan disease. He said echoes are better and more drugs are available. He said we will discover that PH is not that rare. More docs are recognizing PH and there are now drugs to treat it so more cases will be reported.
He told me he will call when he thinks it is time to increase again. He also said now that I feel better, I need to exercise. *sigh* I got my monthly bloodwork drawn and a flu shot.
The receptionist recently had been in the hospital for a week with a blood clot in her lungs. The nurses noticed she was SOB and told Doc. Doc sent her to the hospital. Nice thing about working for a lung man.
If you have COPD and use o2, insurance companies require that you prove every time you go to the doc that your sats are low enough to continue using it. What? The companies think there are recreational o2 users abusing the insurance companies? Users bootleg tanks on the side? I wish someone would tell me the reasoning behind this one.
I cleaned out my desk drawer. Great you say? Ha. Now all the extraneous stuff sits atop the printer. One of these days ... one of these days ... one of these days.
Well, Dude, that is the way it is today, Oct. 12, 2010.
Later.
We talked about PH. He said PH nears the stage it no longer can be classified as an orphan disease. He said echoes are better and more drugs are available. He said we will discover that PH is not that rare. More docs are recognizing PH and there are now drugs to treat it so more cases will be reported.
He told me he will call when he thinks it is time to increase again. He also said now that I feel better, I need to exercise. *sigh* I got my monthly bloodwork drawn and a flu shot.
The receptionist recently had been in the hospital for a week with a blood clot in her lungs. The nurses noticed she was SOB and told Doc. Doc sent her to the hospital. Nice thing about working for a lung man.
If you have COPD and use o2, insurance companies require that you prove every time you go to the doc that your sats are low enough to continue using it. What? The companies think there are recreational o2 users abusing the insurance companies? Users bootleg tanks on the side? I wish someone would tell me the reasoning behind this one.
I cleaned out my desk drawer. Great you say? Ha. Now all the extraneous stuff sits atop the printer. One of these days ... one of these days ... one of these days.
Well, Dude, that is the way it is today, Oct. 12, 2010.
Later.
Another day
I have been pretty worthless lately. I had that burst of energy the first week I started Tyvaso and now that seems to have fled. Yesterday I managed to wash the dishes and sweep the kitchen floor. Not all that much.
The side effects hover just outside my consciousness. A minor headache, some stomach unease, nothing to worry about. I think I have taken four Tylenol since beginning the new drug. I have spent more time asleep late in the afternoon though. That usually means I wake up just in time for my last treatment of the day. That one knocks me on my rear and I go back to bed pretty quickly after that. I might grab a bite to eat. More likely I stare in the refrigerator and the cabinets and then give up.
In a couple of months, you will have been dead for a year. Much can happen in a year, yet it flies by in a blur.
I tried to make connection with your brothers. Neither really reciprocated, though they were polite. I do not wonder.
I ruined a couple of chances to make contact with some of your friends. Others graciously added me into their lives. These friends loved you and cared for you. They fit the definition of friend.
FB offers a forum for folks to spread their causes. Help cure ______ (you fill in the blank) by __________ (again, your choice). I can tell you from my perspective how irritating this gets. Of my 400 or so FB friends, about 275 to 300 have PH or CF. Papering your wall with PH stuff preaches to the choir. I agree we all have friends who need to know about PH or CF, but the majority of our friends also suffer from the disease. I am more interested in the daily lives of my friends. So far, no filter exists for that. Haha.
Got to overhaul my body before my appointment with Doc. I seem to procrastinate even more these days because I can. Not good.
What do you think, Dude?
Later.
The side effects hover just outside my consciousness. A minor headache, some stomach unease, nothing to worry about. I think I have taken four Tylenol since beginning the new drug. I have spent more time asleep late in the afternoon though. That usually means I wake up just in time for my last treatment of the day. That one knocks me on my rear and I go back to bed pretty quickly after that. I might grab a bite to eat. More likely I stare in the refrigerator and the cabinets and then give up.
In a couple of months, you will have been dead for a year. Much can happen in a year, yet it flies by in a blur.
I tried to make connection with your brothers. Neither really reciprocated, though they were polite. I do not wonder.
I ruined a couple of chances to make contact with some of your friends. Others graciously added me into their lives. These friends loved you and cared for you. They fit the definition of friend.
FB offers a forum for folks to spread their causes. Help cure ______ (you fill in the blank) by __________ (again, your choice). I can tell you from my perspective how irritating this gets. Of my 400 or so FB friends, about 275 to 300 have PH or CF. Papering your wall with PH stuff preaches to the choir. I agree we all have friends who need to know about PH or CF, but the majority of our friends also suffer from the disease. I am more interested in the daily lives of my friends. So far, no filter exists for that. Haha.
Got to overhaul my body before my appointment with Doc. I seem to procrastinate even more these days because I can. Not good.
What do you think, Dude?
Later.
Monday, October 11, 2010
Today
The skies rained today. I slept through it. Oops. I visit Doc tomorrow.
I miss you, Dude.
Later.
I miss you, Dude.
Later.
Sunday, October 10, 2010
Sunday, Be There
I am thinking of you, Dude.
Later.
Saturday, October 9, 2010
Reelin' in the years
Your everlasting summerHear a particular song and immediately memories come bubbling up like a spring in the desert. I cannot hear John Philip Sousa without thinking about the college ROTC band which practiced not far from our house when I was about 4.
You can see it fading fast
So you grab a piece of something
That you think is gonna last
You wouldn't know a diamond
If you held it in your hand
The things you think are precious
I can't understand
http://www.youtube.com/watch?v=gFz79SBnuk8&feature=related
"The Third Man" theme always will evoke a memory of my dad in the living room acting like he was dancing.
"Itsy Bitsy Teeny Weeny Yellow Polka Dot Bikini" hit its popularity the summer I stayed with Uncle Charles and his family.
The Beach Boys and surfer music marked my senior year in high school. The rebellion began.
In the early years of college, show tunes and the Beatles. Dad enjoyed embarrassing me with his rendition of "Wild Thing." Then the rebellion hit hard with Moody Blues, Led Zepplin and Janis Joplin.
Add into the mix a good size portion of country and western -- from Bob Wills to Jerry Jeff Walker, from Johnny Cash ("Ring of Fire") to Willie Nelson. Do not forget R&B and soul or Cajun. Or Kinky Friedman or Linda Ronstadt or Emily Lou Harris.
Blues came into my life when I started working in a newsroom. What does that tell you? Gatemouth Brown, Muddy Waters and Johnny Winter. Eric Clapton, Stevie Ray Vaughn, whew.
Leonard Cohen's genius for lyrics could melt a frozen heart.
Somewhere along the line I got stuck on the old stuff. I am not goofy for Lady Ga Ga. The White Stripes are OK and anything rap can take a hike.
See what I mean? Tracing my life by the music.
Ahhhhh haaaaa, Dude.
Later.
Friday, October 8, 2010
Blessings
Think of writing as punching a hole in a water-filled balloon. Depending on the size of the hole, the water trickles out or gushes.
A friend uses her blog to delineate reasons for thankfulness each day. Today I will borrow a page from her blog with a slight adjustment to fit my needs.
I am thankful for ... (sorry alex)
enough money to buy food and medicine.
my cats, which offer nonjudgmental companionship and unconditional love.
my friends, who take me places so I will not have to drive.
my mom, who offered to let me move back home (no way, no how, but thanks nonetheless).
the ability to do for myself.
Doc, who saved my life and puts up with Dr. Cindy.
my PHriends, members of an elite fraternity who offer support and caring from all across the country.
your friends and family who think about me and tell me so.
Later.
A friend uses her blog to delineate reasons for thankfulness each day. Today I will borrow a page from her blog with a slight adjustment to fit my needs.
I am thankful for ... (sorry alex)
enough money to buy food and medicine.
my cats, which offer nonjudgmental companionship and unconditional love.
my friends, who take me places so I will not have to drive.
my mom, who offered to let me move back home (no way, no how, but thanks nonetheless).
the ability to do for myself.
Doc, who saved my life and puts up with Dr. Cindy.
my PHriends, members of an elite fraternity who offer support and caring from all across the country.
your friends and family who think about me and tell me so.
Later.
Thursday, October 7, 2010
Update
My PHriend has new lungs and rests in ICU. What a miracle.
Today I wish I had a digital camera. Satchmo was lying on his back next to my spare o2 mini tanks, which he had knocked over chasing a bug. He looked like a drunk who had passed out next to an empty keg.
My body seems to assimilate the Tyvaso without too many problems so far -- minor headache and minor jaw pain all I have noticed. The final round of increases will tell the tale.
:-) Dude
Later.
Today I wish I had a digital camera. Satchmo was lying on his back next to my spare o2 mini tanks, which he had knocked over chasing a bug. He looked like a drunk who had passed out next to an empty keg.
My body seems to assimilate the Tyvaso without too many problems so far -- minor headache and minor jaw pain all I have noticed. The final round of increases will tell the tale.
:-) Dude
Later.
Every breath I take
Would I have the courage to get a lung transplant?
One of my online PH friends from Fort Worth lies on the operating table. The doctors opened her chest just minutes ago. Another six to nine hours before the docs sew her back up.
In the blink of an eye ago time wise, doctors amputated limbs without anesthetic. Now they replace body parts. Amazing.
In my former, not so sick life, I paid little to no attention to transplants. I recall seeing press releases for fund-raisers. I thought trying to raise that much money with garage sales and dances was not easy. I recall at least a couple of people who died before they got their call.
I knew the importance of organ donation and signed up about the time I started driving.
After I got my PH diagnosis, I began to see the miracles the surgeries accomplished. These stories became more personal. Through the Internet, I met and talked to those waiting for new lungs or kidneys. They became a part of my life.
Several of my friends got new lungs. I rejoiced with them and their families. I sat on the edge of my chair waiting for information and cheered with the good news. A second chance.
I also have seen the down side of transplant. For whatever reason, the body rejects the lungs despite efforts of the docs and recipient. The patient receives another year to live but the year hurls every obstacle at the patient. Some die on the table; some never get the call.
You are in my heart, Dude.
Later.
One of my online PH friends from Fort Worth lies on the operating table. The doctors opened her chest just minutes ago. Another six to nine hours before the docs sew her back up.
In the blink of an eye ago time wise, doctors amputated limbs without anesthetic. Now they replace body parts. Amazing.
In my former, not so sick life, I paid little to no attention to transplants. I recall seeing press releases for fund-raisers. I thought trying to raise that much money with garage sales and dances was not easy. I recall at least a couple of people who died before they got their call.
I knew the importance of organ donation and signed up about the time I started driving.
After I got my PH diagnosis, I began to see the miracles the surgeries accomplished. These stories became more personal. Through the Internet, I met and talked to those waiting for new lungs or kidneys. They became a part of my life.
Several of my friends got new lungs. I rejoiced with them and their families. I sat on the edge of my chair waiting for information and cheered with the good news. A second chance.
I also have seen the down side of transplant. For whatever reason, the body rejects the lungs despite efforts of the docs and recipient. The patient receives another year to live but the year hurls every obstacle at the patient. Some die on the table; some never get the call.
You are in my heart, Dude.
Later.
Wednesday, October 6, 2010
too funny
The third Tyvaso treatment of the day brought some different jaw pain. Like when you clinch your teeth all day. Not painful necessarily, but makes your jaw very tired. May have to suck on hard candies or something.
Peace to you Dude.
Later.
Tuesday, October 5, 2010
Mixed metaphors
Once again the blank page stares at me.
http://www.youtube.com/watch?v=hdgb4waNhn4
Today your memory haunts me as it does on the fifth of every month. I wonder why I cling to six months worth of memories so fiercely? Perhaps age, perhaps the specialness of the relationship.
I wonder if your family and friends grow weary of me; if your family and friends wait for me to grow weary of them as a polite way to sever contact. Many of your friends seem to have moved on with their lives. I do not fault them. I am sure they remember still, they just do not focus on you all the time.
Am I odd? I do not know.
Connie pointed out this past year was a rough one for me. My health hit the skids. Nothing major (except one seven-day visit to the hospital) but lots of little issues that begin to collectively weigh me down. Your death, my depression. The combination sent me hiding under a blanket most of the time.
Now I peek out more regularly. While PH took charge for awhile, good health makes a comeback. This obsession with health plagues most PHers; CFers more. A certain amount of denial keeps us sane. You become what you dwell on. But one cannot allow denial to take over either. A fine balance. One small issue sends your health careening downward.
I poke and prod at your friends and family hoping to learn more about you. My curiosity drives this obsession. I discovered some wonderful people who must have helped shape who you were.
My reaction at your death was an honest one. I was scared, I was hurt, I was angry. I knew very little about your friends. Only what you told me in passing or I gleened from postings on FB. I saw postings meant for only one set of eyes, rather like hiding in the closet when someone makes love in the bedroom. The knowledge made me feel guilty that I knew things I probably should not have known.
You shared with me the episodes of your life which caused your trust to be shattered and yet you continued to yearn for the unattainable. I hope you found your peace.
I still miss someone.
Later.
http://www.youtube.com/watch?v=hdgb4waNhn4
Today your memory haunts me as it does on the fifth of every month. I wonder why I cling to six months worth of memories so fiercely? Perhaps age, perhaps the specialness of the relationship.
I wonder if your family and friends grow weary of me; if your family and friends wait for me to grow weary of them as a polite way to sever contact. Many of your friends seem to have moved on with their lives. I do not fault them. I am sure they remember still, they just do not focus on you all the time.
Am I odd? I do not know.
Connie pointed out this past year was a rough one for me. My health hit the skids. Nothing major (except one seven-day visit to the hospital) but lots of little issues that begin to collectively weigh me down. Your death, my depression. The combination sent me hiding under a blanket most of the time.
Now I peek out more regularly. While PH took charge for awhile, good health makes a comeback. This obsession with health plagues most PHers; CFers more. A certain amount of denial keeps us sane. You become what you dwell on. But one cannot allow denial to take over either. A fine balance. One small issue sends your health careening downward.
I poke and prod at your friends and family hoping to learn more about you. My curiosity drives this obsession. I discovered some wonderful people who must have helped shape who you were.
My reaction at your death was an honest one. I was scared, I was hurt, I was angry. I knew very little about your friends. Only what you told me in passing or I gleened from postings on FB. I saw postings meant for only one set of eyes, rather like hiding in the closet when someone makes love in the bedroom. The knowledge made me feel guilty that I knew things I probably should not have known.
You shared with me the episodes of your life which caused your trust to be shattered and yet you continued to yearn for the unattainable. I hope you found your peace.
I still miss someone.
Later.
Monday, October 4, 2010
Day of rest?
After my last two days of energy induced mania, I planned to take a couch day. A day spent in a sleepy fog with a bit of eating thrown in. The weather cooperated with temperatures in the 40s. I grabbed a blanket, pillow and cat to snuggle down.
The powers that be had other plans. So far, the phone forced me to stir three times and my man in brown brought me my Tracleer. Then the call of nature (lasix) got me up twice.
Well, I just got off the phone with my insurance company nurse Darrel. So that makes four phone calls.
Guess what? Lunch now beckons. I promise myself I will get to the nap soon.
Miss you, Dude.
Later.
The powers that be had other plans. So far, the phone forced me to stir three times and my man in brown brought me my Tracleer. Then the call of nature (lasix) got me up twice.
Well, I just got off the phone with my insurance company nurse Darrel. So that makes four phone calls.
Guess what? Lunch now beckons. I promise myself I will get to the nap soon.
Miss you, Dude.
Later.
Sunday, October 3, 2010
Yee haw
My apartment sparkles. My Tyvaso goes well. The nachos I had for lunch gave me indigestion.
Pogo bugged the Accredo nurse. He stuck his head in her traveling suitcase thing and rubbed his chin on her laptop.True to form, Satchmo did not come out at all. His shyness does not lessen with age.
I worry some about K. The docs there are some of the best in the country. It will be OK.
Miss you, Dude.
Later.
Pogo bugged the Accredo nurse. He stuck his head in her traveling suitcase thing and rubbed his chin on her laptop.True to form, Satchmo did not come out at all. His shyness does not lessen with age.
I worry some about K. The docs there are some of the best in the country. It will be OK.
Miss you, Dude.
Later.
Saturday, October 2, 2010
Wooo-eee
I never realized how sick I was until I started to feel better. Never a truer truism.
Today I feel like I could conquer the world or at the least my apartment. I dusted the living room including the ceiling fan. I cleaned the glass tops on the tables. Needless to say my detailed list of chores would put an insomniac to sleep. Sorry. Let me just say the energy compares to a Christmas and birthday present combined.
OK, I have used up break time. Back to the salt mine.
Later.
Today I feel like I could conquer the world or at the least my apartment. I dusted the living room including the ceiling fan. I cleaned the glass tops on the tables. Needless to say my detailed list of chores would put an insomniac to sleep. Sorry. Let me just say the energy compares to a Christmas and birthday present combined.
OK, I have used up break time. Back to the salt mine.
Later.
Friday, October 1, 2010
Guilty as charged
I have always wanted to be perfect.
I wanted to be a perfect daughter. I wanted perfect grades so I would measure up to what I thought was expected of me.
I wanted to be a perfect friend. In my mind, I always fell short. I was never pretty enough, clever enough, talented enough to fit in anywhere.
I wanted to be a perfect wife and mother only I never loved myself enough to realize that dream. I was never good enough for any man, at least in my mind.
I wanted to be there for you. I wanted to be a hero. I wanted what you said you wanted. I wanted the outcome to be perfect.
Now I want to be a perfect patient. I want to be the easiest, bestest.
I want to talk to you.
Later.
I wanted to be a perfect daughter. I wanted perfect grades so I would measure up to what I thought was expected of me.
I wanted to be a perfect friend. In my mind, I always fell short. I was never pretty enough, clever enough, talented enough to fit in anywhere.
I wanted to be a perfect wife and mother only I never loved myself enough to realize that dream. I was never good enough for any man, at least in my mind.
I wanted to be there for you. I wanted to be a hero. I wanted what you said you wanted. I wanted the outcome to be perfect.
Now I want to be a perfect patient. I want to be the easiest, bestest.
I want to talk to you.
Later.
Got it covered
A nurse from Accredo plans to visit me Sunday to see if I am doing the Tyvaso treatments properly. I dread the visit because my apartment lacks many of the finer appointments. The visit also means I need to get my body in gear and clean the public parts so the nurse will not think I am an utter slob. I plan to shut the cats in the bedroom/bathroom area. Hopefully the nurse will not need to potty when she visits.
I started this post several hours ago, but did not finish. Since I started, an Accredo nurse called to see how I am doing. Doc's nurse also called to say keep doing three breaths for awhile longer. He wants to go slowly because of the COPD. I told her about the symptoms I had had the first couple of days. She told Doc and then called back to chastise me for not calling him. Guilty as charged. I just did not think the symptoms warranted a call to Doc on a weekend. I owe him an apology. Dr. Cindy should retire.
Connie and I went to the grocery, Sears and to lunch. I still have energy. Woo hoo!!
In my heart, Dude.
Later.
I started this post several hours ago, but did not finish. Since I started, an Accredo nurse called to see how I am doing. Doc's nurse also called to say keep doing three breaths for awhile longer. He wants to go slowly because of the COPD. I told her about the symptoms I had had the first couple of days. She told Doc and then called back to chastise me for not calling him. Guilty as charged. I just did not think the symptoms warranted a call to Doc on a weekend. I owe him an apology. Dr. Cindy should retire.
Connie and I went to the grocery, Sears and to lunch. I still have energy. Woo hoo!!
In my heart, Dude.
Later.
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