I have a passion for pillows. I love their soft sleepy goodness. Both feathers and poly-fill are equally welcome in my home. I greatly admire embroidered decorative pillows for the couch or chair, but my main obsession are bedroom pillows. If you stay at my home, better bring one of your own. I have bought several for the guest rooms, but they prefer it on my side of the bed.
This plush appreciation has slowly been spreading throughout the household. My husband was quick to steal back the two pillows we had begrudgingly sacrificed for the comfort of our last house guest. They were originally my pillows. They are all my pillows. Except for the ones that fall on the ground. Once Jane sleeps on it, then it's officially her pillow.
As much as I enjoy this fluffy luxury, there is one thing that hangs over my head a little bit. Every 3 months I have a heart doctor's appointment, and every 3 months I lie to my nurse.
One of the signs that I am not doing so well is that I need to be elevated to sleep comfortably, so being asked how many pillows I recline on is a routine question.
My plethora of pillows serve different purposes. The first one gets wedged slightly between the bed and the headboard. The second pillow makes up for the lack of the first. The third props me up while I read and the fourth pillow is just for curling up with. I use a fifth one to smoother out the sound of my pump. I swear the small mechanical noises it makes are amplified 20 fold as soon as it touches the bed.
Almost every night I'll wake up and I'm sleeping on either one pillow or none at all. So what do I say when the nurse asks me the question? I definitely cannot tell her that I sleep with four. They'd be eyeing me for that transplant list again. Actually, that might be a fun one to have to argue myself out of. "No, no, I'm not sick. I just can't stop buying pillows."
It's not like they really have any identifying markers (except for size and squishiness). I've tried to use the "But this one has white on white stripes" excuse. Karl didn't buy it. Or the pillows. And still, when I see an aisle of plumped up plain white lovelies, I want to bring them all home with me. Saying that I need to replace the old ones works much better but has also over time become an unbelievable statement. Either my pack-rat tendencies or my loyalty (to dust mites?) keeps me from hardly parting with one.
I think I can blame this all on my mother. Ever since I can remember she would travel with her own pillow. The smallest thinnest pillow you've ever seen. It took years for me to realize just how right traveling with your own is. You get to someone's house or a hotel and you are confronted with one of the four dreaded pillows. The flat stiff pillow that you only get one of, the fat pillow which has a plastic covering on it that rustles whenever you move, the pillow with stiff feather ends sticking out of it or the pillow that has been kept in a closet that has not been opened in the year since your last visit. Travelling with your own pillow is a survival must. Many a bad mattress or cheap quilt can be forgiven if you have your beloved to rest your head upon.
Of course, a small amount of ridicule must be tolerated if you are an adult travelling with pillow. You might as well be travelling with a teddy bear. If you are on a plane, order drinks. This helps, but don't be surprised if you get carded.
The one true woe of carrying your own comfort is leaving it behind. Only once have I lost a pillow to a hotel. I now take precautions when I leaving the room for an extended period of time. Leaving a pillow at a friend's or family's house gets a little tricky. At a hotel, you pretty much know that the pillow is irretrievable. You mourn and eventually you move on.
When your pillow is still out there, that's the hardest. Too embarrassed to convey the panic that sets in when you realize what you've done, you must either wait for another visit or beg someone to mail it to you. To date, I have not been brave enough to ask someone to overnight ship a pillow.
There is only one sure way to know that you have your pillow with you when you leave - pack it first. Don't carry anything else out to the car besides that pillow. I also suggest you walk very slowly as to not accidentally trip and use it to break your fall. You don't want to drive for 3 hours with a pillow speckled with mud, grass and fire ants. It will be hard to let your companions carry out the heaviest of the luggage while you safely store your own precious cargo, but you must be strong. The pillow should be used as a flag to mark wherever it is that you want to sit. You may want to keep guard over your pillow to make sure that your travelling buddies don't mistakenly move it to the driver's seat. They may say that they are tired after all of the trips they made, but really they just want you to rest comfortably on your clean pillow while they quietly drive you home.
This brings me to my final casualty of travelling with pillow: the risk of the pillow becoming damaged. I took a lovely pillow (a bit longer than standard, down filling, quite squishy) with a hand embroidered case on a plane going to Toronto. I learned while filling out the customs form that not all ink pens are flight friendly. Now my case and pillow have a beauty mark. The pillow that I travelled with today (king sized, poly-fill, squishy yet slightly firm) has a store embroidered case that it now is speckled with strawberry juice.
I really don't know how strawberry juice got on the bottom of the Tupperware container. It's not like I rubbed strawberries on the outside of it before eating them. And I only had 3. I really really wish I had seen the spill before I slept on it. Anyways.
Sunday, August 1, 2010
I Felt A Draft
True story from Spring 2009, as requested.
It was a slightly special evening because we had guests for dinner. They were the kind of guests that you don't have to shine the silver for, but you do anyways.
I was minding my own business. Actually, I had been taking care of my own business in a little room off a long hall that leads back to the dinner table. The lights were low and there was a lovely glow of candlelight reflecting off of silver and glass. My Labrador, Jane, was faithfully by my side, matching her stride to mine. I had been ill for a long time, so my dining gown was actually my sleeping gown paired with a pale blue robe, which is how what next was even able to occur.
My underwear had hit the ground. I was slowly walking, more shuffling, and then there it was. I was one step closer to au naturale. I froze, Jane froze. Everyone was busy enjoying their dinner and the company, but I was just steps away from them. I looked down at Jane, she looked up at me, we both looked down at the rogue underwear, and then back at each other again. I wish she could have vocalized what she was thinking. “Um, do you want me to go for help?” or maybe, “Well that doesn't happen everyday”.
I retrieved what I had lost as quickly and as quietly as I could. Jane staid with me for a couple of more steps, and then excitedly ran ahead to the people we were rejoining. I am kind of thankful now that she doesn't' speak English. That night would have turned her into a gossip.
It was a slightly special evening because we had guests for dinner. They were the kind of guests that you don't have to shine the silver for, but you do anyways.
I was minding my own business. Actually, I had been taking care of my own business in a little room off a long hall that leads back to the dinner table. The lights were low and there was a lovely glow of candlelight reflecting off of silver and glass. My Labrador, Jane, was faithfully by my side, matching her stride to mine. I had been ill for a long time, so my dining gown was actually my sleeping gown paired with a pale blue robe, which is how what next was even able to occur.
My underwear had hit the ground. I was slowly walking, more shuffling, and then there it was. I was one step closer to au naturale. I froze, Jane froze. Everyone was busy enjoying their dinner and the company, but I was just steps away from them. I looked down at Jane, she looked up at me, we both looked down at the rogue underwear, and then back at each other again. I wish she could have vocalized what she was thinking. “Um, do you want me to go for help?” or maybe, “Well that doesn't happen everyday”.
I retrieved what I had lost as quickly and as quietly as I could. Jane staid with me for a couple of more steps, and then excitedly ran ahead to the people we were rejoining. I am kind of thankful now that she doesn't' speak English. That night would have turned her into a gossip.
What's In The Bag?
I went to California and all I brought back were groceries. Forget Nordstroms, forget William Sonoma, when I get excited about shopping it's because I'm going for groceries. I have not always preferred produce to petticoats, in fact, shopping for clothes usually trumps all. I once choose a Patagonia store over the last day of the American tour of a Rembrandt exhibit. Somewhere something changed.
Ever since I can remember, visiting my grandmother and aunt was synonymous with shopping. I think I always went home looking more stylish than how I arrived. My fall back style is a tee shirt and jeans, so getting fancy new duds created this strange mishmash of dresses and flipflops. Or cut-offs and patent leather sandals. The complete wardrobe transformation was fun, exhausting & fun. I have to admit that over time I started to get a little paranoid about what I took with me to begin with. Surely something that I already had was fit to be seen in?
Sometime after an unfortunate dress phase in junior high and a bit of high school, I graduated to not caring so much about what anyone thought about how I looked. I gave up all purses for a wallet and most of my haircuts were of my own creation. Sometimes I would take up wearing a watch, sometimes it was all about the scarves.
Then came the clothing store jobs. Cheap clothes with a short shelf life. And it really didn't matter. I was hooked on buying clothes again. I kind of loved having the excuse of needing it all for work. I can no longer remember how long I had those jobs, and there is little more than these few sentences that would even be worth repeating. Except that it taught me that I love to work hard. I was fine with the long strange hours, and the physical (100 boxes of clothes don't unpack themselves) and mental (stay awake, do the paperwork) side of it.
The job title that meant everything to me was “Massage Therapist”. This title came with an entire wardrobe of scrubs. I favored Dickey's style - bootcut drawstring pants with a faux wrap shirt. When scrubs were no longer required, I returned to my roots and traded the wrap shirts for tee shirts.
Not that long ago, my years of storing clothes finally came to an end. Hence known as the Great Exodus of 2006. Plastic bin after cardboard box after garbage bag left the attic. My Mom's back was the one lasting casualty. That back just hasn't been right since.
As anyone except for the person hoarding the clothes could predict, nothing looked good on me anymore. Both styles and my body had changed drastically over the last 15 years. A few sentimental pieces stayed behind (like the dress I was wearing the night I met Karl. Black polyurethane never looked so cute), the rest went to Goodwill.
I completely replaced my wardrobe a few more times as the scale dictated. At first the shopping was a reward of sorts. Kind of for being sick. When I lost that last chunk of weight it became a bit of a necessity. I mean really, you just can't go around with your underwear falling to the ground.
After that last hospital stay I became food obsessed. My casual infatuation turned to full blown lust. Being able to eat again after not keeping anything down for so long can do that to a girl. The small amount of body fat I was carrying around did nothing to help the situation. Without any reserves, I was ravenous hungry every hour. It was hard to keep me fed and I was at the mercy of whatever was in my Mom's fridge. I still have a fondness for soy corndogs. I really wish Morningstar would start making those again. It's very likely that the grocery store was my first outing once I was able, but I can't swear to that.
I still get excited when I know that I get to buy food. So buying gifts for my friends at the grocery store was the highest luxury I could think of. Himalayan salt, lemon cookies, dark chocolate wafers, dark chocolate almond cookies, candied ginger, dark chocolate candied ginger, wine, low-sodium soy sauce and I can't remember what all else came back with me. My luggage was outrageously stuffed. I almost didn't make it through security. I could have bribed them with lemon cookies, but those boxes were mine!
I have receipts from 4 different Trader Joe's trips, and I know I went to at least 2 other stores, during a span of 7 days. Ah Trader Joe's. So much contained in so small a store. I came back with no pictures of famous people or landmarks, but when those yummy cookies run out, I'll have to go back.
Ever since I can remember, visiting my grandmother and aunt was synonymous with shopping. I think I always went home looking more stylish than how I arrived. My fall back style is a tee shirt and jeans, so getting fancy new duds created this strange mishmash of dresses and flipflops. Or cut-offs and patent leather sandals. The complete wardrobe transformation was fun, exhausting & fun. I have to admit that over time I started to get a little paranoid about what I took with me to begin with. Surely something that I already had was fit to be seen in?
Sometime after an unfortunate dress phase in junior high and a bit of high school, I graduated to not caring so much about what anyone thought about how I looked. I gave up all purses for a wallet and most of my haircuts were of my own creation. Sometimes I would take up wearing a watch, sometimes it was all about the scarves.
Then came the clothing store jobs. Cheap clothes with a short shelf life. And it really didn't matter. I was hooked on buying clothes again. I kind of loved having the excuse of needing it all for work. I can no longer remember how long I had those jobs, and there is little more than these few sentences that would even be worth repeating. Except that it taught me that I love to work hard. I was fine with the long strange hours, and the physical (100 boxes of clothes don't unpack themselves) and mental (stay awake, do the paperwork) side of it.
The job title that meant everything to me was “Massage Therapist”. This title came with an entire wardrobe of scrubs. I favored Dickey's style - bootcut drawstring pants with a faux wrap shirt. When scrubs were no longer required, I returned to my roots and traded the wrap shirts for tee shirts.
Not that long ago, my years of storing clothes finally came to an end. Hence known as the Great Exodus of 2006. Plastic bin after cardboard box after garbage bag left the attic. My Mom's back was the one lasting casualty. That back just hasn't been right since.
As anyone except for the person hoarding the clothes could predict, nothing looked good on me anymore. Both styles and my body had changed drastically over the last 15 years. A few sentimental pieces stayed behind (like the dress I was wearing the night I met Karl. Black polyurethane never looked so cute), the rest went to Goodwill.
I completely replaced my wardrobe a few more times as the scale dictated. At first the shopping was a reward of sorts. Kind of for being sick. When I lost that last chunk of weight it became a bit of a necessity. I mean really, you just can't go around with your underwear falling to the ground.
After that last hospital stay I became food obsessed. My casual infatuation turned to full blown lust. Being able to eat again after not keeping anything down for so long can do that to a girl. The small amount of body fat I was carrying around did nothing to help the situation. Without any reserves, I was ravenous hungry every hour. It was hard to keep me fed and I was at the mercy of whatever was in my Mom's fridge. I still have a fondness for soy corndogs. I really wish Morningstar would start making those again. It's very likely that the grocery store was my first outing once I was able, but I can't swear to that.
I still get excited when I know that I get to buy food. So buying gifts for my friends at the grocery store was the highest luxury I could think of. Himalayan salt, lemon cookies, dark chocolate wafers, dark chocolate almond cookies, candied ginger, dark chocolate candied ginger, wine, low-sodium soy sauce and I can't remember what all else came back with me. My luggage was outrageously stuffed. I almost didn't make it through security. I could have bribed them with lemon cookies, but those boxes were mine!
I have receipts from 4 different Trader Joe's trips, and I know I went to at least 2 other stores, during a span of 7 days. Ah Trader Joe's. So much contained in so small a store. I came back with no pictures of famous people or landmarks, but when those yummy cookies run out, I'll have to go back.
Tuesday, July 27, 2010
Huggy Monster
Written 07.01.10
I love hugs. I have always been big on hugs. This is a trait that is cute when you're a kid but a slightly risque practice when you are in high school. I tend to give more hugs when I am feeling over exuberant. Like on a first day of school. I know I dazed at least one guy goofy after one of my hugs. If you are around me when I am overjoyed, my apologies for the 4 hugs that I probably bestowed on you as you were trying to go home. Just try and go with it. I will eventually stop.
I got the most compliments on my hugs when I weighed over 150 lbs. Squishy hugs are a comforting thing, and some extra weight definitely makes this hug possible. The last compliment that I remember receiving on a hug was actually a shameful moment for. I was in 2 glasses of wine on Christmas Night surrounded by family. I've always been embarrassed by compliments and was immediately flustered by this one, a very simple “Oh, you give the best hugs!”. I said something about how that was because I had a husband to practice on. The woman who gave the compliment had been divorced and was still single. Probably (hopefully) a long forgotten slight, but my respect for her is so great that even now the memory of it makes me wince.
Over time I became more hesitant of hugging complete strangers. I found that it was usually safer to wait for the other person to make the first move. This slight adjustment immediately cut down on the amount of married men that hit on me. Given permission once and you'll always get a hug (unless you are a married man hitting on me). After that is when the hugging madness takes hold.
I am often surprised by the people who want hugs. At one doctor's visit, a visiting physician who had given me some grim consults had come in to check my status. I was doing tremendously better from the last time I saw him and everyone in the office was relieved and hugs were being generously handed out. When he left he seemed to want his hug. Since he had been such a bearer of bad news, I just couldn't do it. His attitude the whole time he treated me was dismal. Whenever he came around I was pretty much counting the seconds until he left. But what gets me now is that I regret not hugging Doctor Doom. Would it have been so hard to give the guy a hug? I don't know how much he may have worried about me or how relieved he might have been that I was better. Maybe he was trying to become a hugger. So frustrating when I do that to myself. I really could use a delete key for some of my memories. I'll keep the truly painful memories if I can just have the option to drop the small jabbing ones. Maybe I need a hug.
My favorite all-time kind of hug are the heart hugs. I'm not sure that arm placement completely matters, but hands on your back over the place where your is, that's the crucial part. What's even better is when this particular hug is given to you by someone that you love. Just recently I received a heart hug from persons that I did not yet know that I was going to love.
This past weekend I was in a fashion show at a PH conference. The last one I had attended seemed a bit shy on adults, which is truly amazing because it was held in Texas. I thought we would have represented a little better on stage. I sent an email to the woman who was organizing this year's event, just a casual noncommittal kind of note. “If you need another adult I might be available, if you don't, no worries.” The response back was immediate. I was most definitely wanted. So started my worrying.
I had no idea what I would wear. This year's Old Navy fashions are comfortable, but I wouldn't strut them down a runway. “Honey is wearing a blue Henley tee shirt with frayed seams, rolled cuff faded denim shorts and gold flip flops. Her hair is held in place with a matching blue rubber band.”
As it turned out, all I needed to bring was me and a nice pair of black shoes. The black shoes I was wanting anyways, and the world presented me with the perfect pair. Everything was going smoothly. The first full day at the conference I met Rynna, the woman who let me know I was wanted, and her sister, Sherri, for a dress fitting.
I have said this once already, but it needs to be said again. Every woman should have the experience of walking into a room filled with dresses that someone has picked out with you in mind. Of course the experience could only be complete if Rynna and Sherri were there, so you must also travel to California. This trip is another must if you are a Texan trying to survive the second month of summer. I tried on 5 dresses, 4 of which look wonderful on me, 3 of which I was to wear in the show. Scarves, hats and purses were brought out to coordinate and hide anything medical hanging off of me.
I looked completely different to myself trying on those dresses. From my little fitting room I could half hear my shape being discussed. That's something else that every woman should get to experience. 2 women describing you in the most kind and positive way possible. Personally, I feel I look like a Gustav Klimt painting. Not the one of the pretty red head, but the brutally honest looking one of the woman in her 40's or 50's. I have to admit, looking at one of those almost harsh paintings, there is beauty in even that.
These two sisters are some of the loveliest women I have ever met. Maybe it's that we share a common Texas background, but something about them, I fell in love instantly. And then came the hug.
My fitting was done, I got to show off to Karl a little bit, and it was time to start the PH sessions. Both women embraced me with a smile and gave me the best heart hug. It was the kind that you receive from the ones that you love. You just feel it deep in your heart.
I went to Anaheim to connect with other PH people, to learn and to find new hope for the future. All of those things did happen, but I also found part of my family that I did not know was missing. Part of my heart is with them now. I hope they feel special when I forget to send them a Christmas card. Just like with the rest of my family.
Heart hugs to you all.
I love hugs. I have always been big on hugs. This is a trait that is cute when you're a kid but a slightly risque practice when you are in high school. I tend to give more hugs when I am feeling over exuberant. Like on a first day of school. I know I dazed at least one guy goofy after one of my hugs. If you are around me when I am overjoyed, my apologies for the 4 hugs that I probably bestowed on you as you were trying to go home. Just try and go with it. I will eventually stop.
I got the most compliments on my hugs when I weighed over 150 lbs. Squishy hugs are a comforting thing, and some extra weight definitely makes this hug possible. The last compliment that I remember receiving on a hug was actually a shameful moment for. I was in 2 glasses of wine on Christmas Night surrounded by family. I've always been embarrassed by compliments and was immediately flustered by this one, a very simple “Oh, you give the best hugs!”. I said something about how that was because I had a husband to practice on. The woman who gave the compliment had been divorced and was still single. Probably (hopefully) a long forgotten slight, but my respect for her is so great that even now the memory of it makes me wince.
Over time I became more hesitant of hugging complete strangers. I found that it was usually safer to wait for the other person to make the first move. This slight adjustment immediately cut down on the amount of married men that hit on me. Given permission once and you'll always get a hug (unless you are a married man hitting on me). After that is when the hugging madness takes hold.
I am often surprised by the people who want hugs. At one doctor's visit, a visiting physician who had given me some grim consults had come in to check my status. I was doing tremendously better from the last time I saw him and everyone in the office was relieved and hugs were being generously handed out. When he left he seemed to want his hug. Since he had been such a bearer of bad news, I just couldn't do it. His attitude the whole time he treated me was dismal. Whenever he came around I was pretty much counting the seconds until he left. But what gets me now is that I regret not hugging Doctor Doom. Would it have been so hard to give the guy a hug? I don't know how much he may have worried about me or how relieved he might have been that I was better. Maybe he was trying to become a hugger. So frustrating when I do that to myself. I really could use a delete key for some of my memories. I'll keep the truly painful memories if I can just have the option to drop the small jabbing ones. Maybe I need a hug.
My favorite all-time kind of hug are the heart hugs. I'm not sure that arm placement completely matters, but hands on your back over the place where your is, that's the crucial part. What's even better is when this particular hug is given to you by someone that you love. Just recently I received a heart hug from persons that I did not yet know that I was going to love.
This past weekend I was in a fashion show at a PH conference. The last one I had attended seemed a bit shy on adults, which is truly amazing because it was held in Texas. I thought we would have represented a little better on stage. I sent an email to the woman who was organizing this year's event, just a casual noncommittal kind of note. “If you need another adult I might be available, if you don't, no worries.” The response back was immediate. I was most definitely wanted. So started my worrying.
I had no idea what I would wear. This year's Old Navy fashions are comfortable, but I wouldn't strut them down a runway. “Honey is wearing a blue Henley tee shirt with frayed seams, rolled cuff faded denim shorts and gold flip flops. Her hair is held in place with a matching blue rubber band.”
As it turned out, all I needed to bring was me and a nice pair of black shoes. The black shoes I was wanting anyways, and the world presented me with the perfect pair. Everything was going smoothly. The first full day at the conference I met Rynna, the woman who let me know I was wanted, and her sister, Sherri, for a dress fitting.
I have said this once already, but it needs to be said again. Every woman should have the experience of walking into a room filled with dresses that someone has picked out with you in mind. Of course the experience could only be complete if Rynna and Sherri were there, so you must also travel to California. This trip is another must if you are a Texan trying to survive the second month of summer. I tried on 5 dresses, 4 of which look wonderful on me, 3 of which I was to wear in the show. Scarves, hats and purses were brought out to coordinate and hide anything medical hanging off of me.
I looked completely different to myself trying on those dresses. From my little fitting room I could half hear my shape being discussed. That's something else that every woman should get to experience. 2 women describing you in the most kind and positive way possible. Personally, I feel I look like a Gustav Klimt painting. Not the one of the pretty red head, but the brutally honest looking one of the woman in her 40's or 50's. I have to admit, looking at one of those almost harsh paintings, there is beauty in even that.
These two sisters are some of the loveliest women I have ever met. Maybe it's that we share a common Texas background, but something about them, I fell in love instantly. And then came the hug.
My fitting was done, I got to show off to Karl a little bit, and it was time to start the PH sessions. Both women embraced me with a smile and gave me the best heart hug. It was the kind that you receive from the ones that you love. You just feel it deep in your heart.
I went to Anaheim to connect with other PH people, to learn and to find new hope for the future. All of those things did happen, but I also found part of my family that I did not know was missing. Part of my heart is with them now. I hope they feel special when I forget to send them a Christmas card. Just like with the rest of my family.
Heart hugs to you all.
Saturday, July 10, 2010
Fresh Conference
I love the smell of a fresh conference in the morning! Despite having an awful night's sleep, I was awake at 6am California time ready to get the day started. The only thing that kept me quiet was my fear of wrathful Grumpy Morning Bears. A handsome but surly breed if awoken too early in the day.
I busied myself with my morning routine (I'm sure it's much the same as yours. Unless you wear makeup), went downstairs to renew our room key and got some burnt, overpriced coffee and then finished writing about yesterday's antics.
Karl got up not long after that and we went to Block Orange for breakfast at Jamba Juice. I chatted with a woman who was about my age, in yoga gear (on her way to work, not yoga), where she thought there was a healthy place to eat at. She suggested Subway. Ugh. I've come to California, and the healthiest food people can come up with is at Coco's, a tavern knock-off and Subway.
Our first stop for the day was my dress fitting with quite possibly the loveliest women in California, Rynna and Sherri. Every woman should have the experience of trying on clothes that have picked out with you in mind. I loved every dress, even the one that didn't fit. Hats, scarves and purses were layered on me. I felt fabulous.
One of my favorite things is to meet women that you could easily spend the rest of your life having lunch with. I've been here one day and I already have a reason to come back to California.
First session of the day was Travelling With PH. We actually got directed to Living With PH in an Upbeat Way. One of the speakers couldn't talk without crying. That's the thing about these conferences, you get so excited to be amongst your people that your emotions tend to live close to the surface. I might have cried, too.
As soon as it was appropriate we snuck out. I got some great tips on travelling with oxygen, although I am still not sure what I am going to do about the flight back home.
We had lunch at the hotel. I wish we had dinner at that restaurant. I was grateful for steamed vegetables that had not been overcooked.
Walking to the next session was when I noticed that all of the hotel employees were wearing the periwinkle ribbon pin. I really liked that. All of the staff there were so nice. Very smiley. I liked that, too.
Something else that I appreciated was seeing people at this conference that I had seen at the one in Houston two years ago. When we first researched PH, the reports on life expectancy were just awful. After getting more information and meeting other PHers, I got a new perspective. It really is still the same deal. No one knows when their last day on this earth will be. There are no guarantees. That's a very reassuring thought for me.
We also went to a Flolan/Remodulin support group. All of this medicine... different dosages, different ways of getting it into us, different peripheral drugs. No two people are on the exact same plan.
Dinner was in one of the "ballrooms". Large tables that sat 10, and at one end of the room we had various speakers. Dinner was not heart healthy or tasty. Our table was a mix of very active PHers and people for whom this was their first conference. They had decided it would also be their last. I can understand their frustration with the sessions. I think in the end we all want the session entitled "How to cure PH". At the very least "Fool-Proof Way to Make You Feel Like You Don't Have PH".
And that was our day. Maybe there was another session that I am forgetting about right now. I am very sleepy and my focus is on some white fluffy pillows. Tomorrow is going to be busy. Must hurry off to it.
I busied myself with my morning routine (I'm sure it's much the same as yours. Unless you wear makeup), went downstairs to renew our room key and got some burnt, overpriced coffee and then finished writing about yesterday's antics.
Karl got up not long after that and we went to Block Orange for breakfast at Jamba Juice. I chatted with a woman who was about my age, in yoga gear (on her way to work, not yoga), where she thought there was a healthy place to eat at. She suggested Subway. Ugh. I've come to California, and the healthiest food people can come up with is at Coco's, a tavern knock-off and Subway.
Our first stop for the day was my dress fitting with quite possibly the loveliest women in California, Rynna and Sherri. Every woman should have the experience of trying on clothes that have picked out with you in mind. I loved every dress, even the one that didn't fit. Hats, scarves and purses were layered on me. I felt fabulous.
One of my favorite things is to meet women that you could easily spend the rest of your life having lunch with. I've been here one day and I already have a reason to come back to California.
First session of the day was Travelling With PH. We actually got directed to Living With PH in an Upbeat Way. One of the speakers couldn't talk without crying. That's the thing about these conferences, you get so excited to be amongst your people that your emotions tend to live close to the surface. I might have cried, too.
As soon as it was appropriate we snuck out. I got some great tips on travelling with oxygen, although I am still not sure what I am going to do about the flight back home.
We had lunch at the hotel. I wish we had dinner at that restaurant. I was grateful for steamed vegetables that had not been overcooked.
Walking to the next session was when I noticed that all of the hotel employees were wearing the periwinkle ribbon pin. I really liked that. All of the staff there were so nice. Very smiley. I liked that, too.
Something else that I appreciated was seeing people at this conference that I had seen at the one in Houston two years ago. When we first researched PH, the reports on life expectancy were just awful. After getting more information and meeting other PHers, I got a new perspective. It really is still the same deal. No one knows when their last day on this earth will be. There are no guarantees. That's a very reassuring thought for me.
We also went to a Flolan/Remodulin support group. All of this medicine... different dosages, different ways of getting it into us, different peripheral drugs. No two people are on the exact same plan.
Dinner was in one of the "ballrooms". Large tables that sat 10, and at one end of the room we had various speakers. Dinner was not heart healthy or tasty. Our table was a mix of very active PHers and people for whom this was their first conference. They had decided it would also be their last. I can understand their frustration with the sessions. I think in the end we all want the session entitled "How to cure PH". At the very least "Fool-Proof Way to Make You Feel Like You Don't Have PH".
And that was our day. Maybe there was another session that I am forgetting about right now. I am very sleepy and my focus is on some white fluffy pillows. Tomorrow is going to be busy. Must hurry off to it.
Travelling in the Debit Column
Written on 06.24.10
Trouble was looking for a woman in yoga pants and a butterfly tee shirt and it sure found her. I think Trouble knew that I had no plans for yoga and decided to teach me a lesson in flexibility. Actually, it was really targeting my wallet.
The trouble, like all trouble in my life, began with fogginess and forgetfulness. The first thing I forgot to do was to eat nicely. 2 days until departure and I loaded up on lumberjack sized sandwiches. I have no idea what I was thinking – well, I do, but that's another blog – but for some reason – yes, a reason I could tell you but won't yet – I had an Italian sandwich for breakfast and half a barbecue sandwich with 2 ribs for dinner. A stronger women of 14 could of handled that, but not me. I didn't even come close. One bad sandwich decision made in sleepiness lead to another one. So then of course I had to spend the next 7 hours laid out on the couch. 7 hours that I needed to be spending packing, cleaning and making phone calls.
I woke up feeling like I had spent a night out on the town with a lumberjack. I pretty much kept moving from the time I got up until I went to bed. There would be no rest for those who ran with lumberjacks. I am a bit proud of myself that I was able to keep up.
So started Travel day. This was to be the first time we have flown using Flolan. I quickly packed the last of what needed to be packed (because that's the sane thing to do 2 hours before your plane departs) and wrote down random phone numbers and addresses for our various destinations. Karl got together the last of the medicine and loaded the car.
The second thing I forgot to do was pick up a prescription that I had filled. Thankfully, Walgreens is just about everywhere that I will agree to travel to and they have fancy computers that let me pick up things I forgot in other cities. As we drove off I realized that I did not say goodbye to Coco. Unfortunately we were feeling short on time. I also forgot to grab a nutritional book that I was wanting to read on the plane. Then again, that did give me a reason to buy a magazine, so maybe I should move that one to the "pros". 1st increased expense, Simple magazine $3.95. I also forgot to move any of the potted plants inside. I am not sure that any of them will be alive when we get back. If they are indeed all dead, then I will be replanting 8 pots with cactus or some other plant that is not as offended by the Texas sun's hospitality and the random neglect of a good intentioned person. 2nd increased expense, whatever the booze costs for a decent wake and burial.
Then came the dreaded airport parking. I had been preparing for a half mile hike in the humidity that always seems to end with a quick sprint for a departing bus. My fabulous husband decided to forgo this traditional event and parked directly across from our gate. 3rd increased expense, 2 ½ times the parking rate that I planned for. Benefit, no one had to lift heavy luggage up into a bus.
At the self-check in line I thought I was saving time by putting both bags under my name. Karl later told me that doing so cost us an additional fee. Then came the scales. Nothing good comes of weighing in when you are overstuffed. The suitcase carrying my medicine was 7 lbs overweight. This cost another very hefty fee. 4th increased expense, a total of $110 for luggage. Benefit, none known at this time.
On to security check. Again, first time flying with Flolan. I could have gotten the expert advice from another Flolan patient who is the mecca of all things cool in PH, but instead it was much easier to completely forget and just wing it. At least I had the letter with me that explained why I needed to take a bag filled with needles and vials of white powder and clear liquid onto the plane. The small bag of contraband went through the x-ray machine without a second glance. I, however, was put into the special “Veal Holding Cell” to await a woman who pat me down in a way that should only be done after at least one of us had some cocktails. And now she won't return my calls.
We had a little time before departure, so we hunted down breakfast. You know you're in trouble when the healthiest thing in front of you is a McDonalds. I really wish I had made a meal for us before we left. 5th increased expense, $5.65 for the meal plus $15 for antacid. Benefit, we won't be ordering $4 bags of chips on the plane. Tummies now filled with fattened cement, a pack of gum in my pocket, a funny book for Karl, a magazine for me (yeah!) and we were ready to fly.
I love flying. I had gone through a phase where it truly scared me, but I got over it. All I have to do now was think about how my everyday life is pretty laid back, and today I get to ride on a roller coaster. Instant thrill to fly ensues. The plane takes off and I happily laugh.
All was well until about 25, 000 feet. That's when I lost my hearing (gum was both too sweet and worthless) and it felt like there was a lumberjack curled up asleep on my chest. I slowed down my breathing while Karl rubbed my back. I think I may have to request oxygen next time. I was feeling pretty roughed up until the drink cart came around. Iced cranberry juice always improves my disposition, even when it comes with 50 grams of sugar to a 12 oz can. Once I was breathing easier I went back to enjoying the flight. Then we landed and I got stupid again.
It seemed important at the time to immediately get signed onto the internet so we could look up our driving directions. Of course I also had to inspect their ladies room and then a passerby chatted with us for a moment. All of this time our bags were waiting for us. Yep, we abandoned the extremely costly and very inconvenient to replace suitcase filled with life sustaining medicines. The kids were left at school and apparently no one was coming to get them. By the time we got to the baggage claim our children had left and the school had turned off it's lights. Our extreme panic ended 15 minutes later when Karl found them stowed behind a check-in counter. The bags had possibly decided that it was just best to try and make it home on their own. Silly thing to do since we have the house keys.
Because I had forgotten to print off directions to anywhere, my husband got a gps for our rental car. 6th increased expense, $66 + tax. Benefit, I didn't have to get carsick reading a map. The drive to our friend's house was both lovely and unnerving. Lovely because everything was blooming so profusely. Purple lillies of the nile and jacaranda blooming everywhere you looked. California was definitely welcoming the PH conference. I was completely unnerved because a large part of the sky is the same color as the road and the air tastes dirty. I don't know how you could look at that sky and not want to immediately start living a “greener” lifestyle.
It wasn't until we were about 2 minutes from our destination that I realized we were not expected. Our travel plans changed so many times, and I never did inform anyone of our arrival. So we found a nice place to have lunch. I was really enjoying my pumpkin soup until the waitress told us that all of the recipes had been the cook's mother's. Suddenly it made more sense why it was so delicious, great quantities of cream and butter. 7th increased expense, the size of my cheeks. Benefit, culinary inspiration. I've got to try making my own pumpkin soup with cumin.
Next stop, the hotel. I thought checking in a day early would be a breeze, but my using a website to pay for the room and then not writing the itinerary # down made for several long conversations that almost drove me to drink. Everything was settled by the the time we got to Disney. 8th increased expense, overpriced hotel room. Benefit, none known yet.
We asked around for a healthy place to dine, but none was to be found in the land of Disney. Just lots of family chains. The hotel concierge suggested we try ordering a salad from Coco's. The pharmacist at Walgreens suggested a place that had "Tango" in the name. We decided on the one that referenced exercise. Oh what they did to that poor mojito. And the fajitas! They never had a chance under the heat lamp. The tragedy of it all! Out of desperation I tried a fish taco at a place proclaiming to have the best. I don't know, maybe the best fish taco that you can make with rancid oil. Any meal that was that awful definitely goes into the expense column. 9th increased expense, 2 really bad dinners. Benefit, I doubt I will eat at a chain restaurant again.
The time has come to go to sleep. Tomorrow starts the conference. I'm really happy that Karl is here with me. I hope he enjoys the experience, too. Expense of going to California, only American Express knows now. Benefit, I'm really excited to find out.
Trouble was looking for a woman in yoga pants and a butterfly tee shirt and it sure found her. I think Trouble knew that I had no plans for yoga and decided to teach me a lesson in flexibility. Actually, it was really targeting my wallet.
The trouble, like all trouble in my life, began with fogginess and forgetfulness. The first thing I forgot to do was to eat nicely. 2 days until departure and I loaded up on lumberjack sized sandwiches. I have no idea what I was thinking – well, I do, but that's another blog – but for some reason – yes, a reason I could tell you but won't yet – I had an Italian sandwich for breakfast and half a barbecue sandwich with 2 ribs for dinner. A stronger women of 14 could of handled that, but not me. I didn't even come close. One bad sandwich decision made in sleepiness lead to another one. So then of course I had to spend the next 7 hours laid out on the couch. 7 hours that I needed to be spending packing, cleaning and making phone calls.
I woke up feeling like I had spent a night out on the town with a lumberjack. I pretty much kept moving from the time I got up until I went to bed. There would be no rest for those who ran with lumberjacks. I am a bit proud of myself that I was able to keep up.
So started Travel day. This was to be the first time we have flown using Flolan. I quickly packed the last of what needed to be packed (because that's the sane thing to do 2 hours before your plane departs) and wrote down random phone numbers and addresses for our various destinations. Karl got together the last of the medicine and loaded the car.
The second thing I forgot to do was pick up a prescription that I had filled. Thankfully, Walgreens is just about everywhere that I will agree to travel to and they have fancy computers that let me pick up things I forgot in other cities. As we drove off I realized that I did not say goodbye to Coco. Unfortunately we were feeling short on time. I also forgot to grab a nutritional book that I was wanting to read on the plane. Then again, that did give me a reason to buy a magazine, so maybe I should move that one to the "pros". 1st increased expense, Simple magazine $3.95. I also forgot to move any of the potted plants inside. I am not sure that any of them will be alive when we get back. If they are indeed all dead, then I will be replanting 8 pots with cactus or some other plant that is not as offended by the Texas sun's hospitality and the random neglect of a good intentioned person. 2nd increased expense, whatever the booze costs for a decent wake and burial.
Then came the dreaded airport parking. I had been preparing for a half mile hike in the humidity that always seems to end with a quick sprint for a departing bus. My fabulous husband decided to forgo this traditional event and parked directly across from our gate. 3rd increased expense, 2 ½ times the parking rate that I planned for. Benefit, no one had to lift heavy luggage up into a bus.
At the self-check in line I thought I was saving time by putting both bags under my name. Karl later told me that doing so cost us an additional fee. Then came the scales. Nothing good comes of weighing in when you are overstuffed. The suitcase carrying my medicine was 7 lbs overweight. This cost another very hefty fee. 4th increased expense, a total of $110 for luggage. Benefit, none known at this time.
On to security check. Again, first time flying with Flolan. I could have gotten the expert advice from another Flolan patient who is the mecca of all things cool in PH, but instead it was much easier to completely forget and just wing it. At least I had the letter with me that explained why I needed to take a bag filled with needles and vials of white powder and clear liquid onto the plane. The small bag of contraband went through the x-ray machine without a second glance. I, however, was put into the special “Veal Holding Cell” to await a woman who pat me down in a way that should only be done after at least one of us had some cocktails. And now she won't return my calls.
We had a little time before departure, so we hunted down breakfast. You know you're in trouble when the healthiest thing in front of you is a McDonalds. I really wish I had made a meal for us before we left. 5th increased expense, $5.65 for the meal plus $15 for antacid. Benefit, we won't be ordering $4 bags of chips on the plane. Tummies now filled with fattened cement, a pack of gum in my pocket, a funny book for Karl, a magazine for me (yeah!) and we were ready to fly.
I love flying. I had gone through a phase where it truly scared me, but I got over it. All I have to do now was think about how my everyday life is pretty laid back, and today I get to ride on a roller coaster. Instant thrill to fly ensues. The plane takes off and I happily laugh.
All was well until about 25, 000 feet. That's when I lost my hearing (gum was both too sweet and worthless) and it felt like there was a lumberjack curled up asleep on my chest. I slowed down my breathing while Karl rubbed my back. I think I may have to request oxygen next time. I was feeling pretty roughed up until the drink cart came around. Iced cranberry juice always improves my disposition, even when it comes with 50 grams of sugar to a 12 oz can. Once I was breathing easier I went back to enjoying the flight. Then we landed and I got stupid again.
It seemed important at the time to immediately get signed onto the internet so we could look up our driving directions. Of course I also had to inspect their ladies room and then a passerby chatted with us for a moment. All of this time our bags were waiting for us. Yep, we abandoned the extremely costly and very inconvenient to replace suitcase filled with life sustaining medicines. The kids were left at school and apparently no one was coming to get them. By the time we got to the baggage claim our children had left and the school had turned off it's lights. Our extreme panic ended 15 minutes later when Karl found them stowed behind a check-in counter. The bags had possibly decided that it was just best to try and make it home on their own. Silly thing to do since we have the house keys.
Because I had forgotten to print off directions to anywhere, my husband got a gps for our rental car. 6th increased expense, $66 + tax. Benefit, I didn't have to get carsick reading a map. The drive to our friend's house was both lovely and unnerving. Lovely because everything was blooming so profusely. Purple lillies of the nile and jacaranda blooming everywhere you looked. California was definitely welcoming the PH conference. I was completely unnerved because a large part of the sky is the same color as the road and the air tastes dirty. I don't know how you could look at that sky and not want to immediately start living a “greener” lifestyle.
It wasn't until we were about 2 minutes from our destination that I realized we were not expected. Our travel plans changed so many times, and I never did inform anyone of our arrival. So we found a nice place to have lunch. I was really enjoying my pumpkin soup until the waitress told us that all of the recipes had been the cook's mother's. Suddenly it made more sense why it was so delicious, great quantities of cream and butter. 7th increased expense, the size of my cheeks. Benefit, culinary inspiration. I've got to try making my own pumpkin soup with cumin.
Next stop, the hotel. I thought checking in a day early would be a breeze, but my using a website to pay for the room and then not writing the itinerary # down made for several long conversations that almost drove me to drink. Everything was settled by the the time we got to Disney. 8th increased expense, overpriced hotel room. Benefit, none known yet.
We asked around for a healthy place to dine, but none was to be found in the land of Disney. Just lots of family chains. The hotel concierge suggested we try ordering a salad from Coco's. The pharmacist at Walgreens suggested a place that had "Tango" in the name. We decided on the one that referenced exercise. Oh what they did to that poor mojito. And the fajitas! They never had a chance under the heat lamp. The tragedy of it all! Out of desperation I tried a fish taco at a place proclaiming to have the best. I don't know, maybe the best fish taco that you can make with rancid oil. Any meal that was that awful definitely goes into the expense column. 9th increased expense, 2 really bad dinners. Benefit, I doubt I will eat at a chain restaurant again.
The time has come to go to sleep. Tomorrow starts the conference. I'm really happy that Karl is here with me. I hope he enjoys the experience, too. Expense of going to California, only American Express knows now. Benefit, I'm really excited to find out.
Monday, June 14, 2010
Boundaries
I have had an annoying problem lately. Just when I get in a happy little mood and I'm all ready to write something out, a bit of the grumpy life sets in. Sometimes it's my grumpy stuff, other times it's someone else's.
My grumpy stuff is just boring and I don't even want to hear about it. Typically it's that I'm tired, I don't want to be tired and now I'm grumpy because I'm tired, which usually just leads to a blue mood because I don't want to be grumpy or tired. Why would I want to share that every time it happens?
Other people's grumpy, well that I do not share for a different reason. My name and my stories are on this blog because I choose for them to be. I just don't feel like I have the right to put my friends and family on display. Even if I do not mention them by name, someone somewhere will know who I am talking about, starting with the person that is the subject of the story.
And it goes beyond just grumpy. For example, someone you love continues to walk into a brick wall that you deperately want to point out to them, but you know that they have to know the wall is there, I mean there is a huge flashing sign that says "Wall - Do Not Walk Into Me" on it, and yet...
All of this, of course, reminds me of my father. Now him, I have no problem telling stories about. Partly because he's dead and any arguments we have now are very one-sided and partly because my father was a huge fan of letting it all hang out. If someone was holding back a secret, he felt it was best to talk about it. Not in an "Enquirer" kind of way, but in the "Secrets only hide shame and fear" kind of way.
I have tried his way before with family, but was horribly unsuccessful. I guess openly airing secrets should be left to the people who regularly burn sage and smell like lavender and patchouli. And so, on many topics I have become mute. A very hard thing to accomplish when it involves the people you are rooting for.
One time I tried to write out my feelings in the extreme abstract, but in the end I still identified my subject just a little too well. I think the only way I could ever publish that story would be if I removed the last few sentences (which I refuse to do) or if my blog was published completely anonymously with absolutely no ties to the people I know. I think I'm starting to see how easy and enticing it could be to share a personal story with a complete stranger.
During the day I worry too much over the hearts of my loved ones, and at night when my heart is resting, I am able to think of the stories that make me smile. Maybe I should set up the laptop in the bedroom. The last story I wanted to write was going to be called "Pillow Talk". I am very much look forward to reading that one.
Tonight I'll end this entry with the mantra I have for the people whose lives I want to change just a little bit to make me happy. "They are doing what they need to be doing right now. Later they may do something else, but for now, this is what they are choosing for themselves and I love them."
Much love to everyone tonight. I hope all of your hearts are resting easy.
My grumpy stuff is just boring and I don't even want to hear about it. Typically it's that I'm tired, I don't want to be tired and now I'm grumpy because I'm tired, which usually just leads to a blue mood because I don't want to be grumpy or tired. Why would I want to share that every time it happens?
Other people's grumpy, well that I do not share for a different reason. My name and my stories are on this blog because I choose for them to be. I just don't feel like I have the right to put my friends and family on display. Even if I do not mention them by name, someone somewhere will know who I am talking about, starting with the person that is the subject of the story.
And it goes beyond just grumpy. For example, someone you love continues to walk into a brick wall that you deperately want to point out to them, but you know that they have to know the wall is there, I mean there is a huge flashing sign that says "Wall - Do Not Walk Into Me" on it, and yet...
All of this, of course, reminds me of my father. Now him, I have no problem telling stories about. Partly because he's dead and any arguments we have now are very one-sided and partly because my father was a huge fan of letting it all hang out. If someone was holding back a secret, he felt it was best to talk about it. Not in an "Enquirer" kind of way, but in the "Secrets only hide shame and fear" kind of way.
I have tried his way before with family, but was horribly unsuccessful. I guess openly airing secrets should be left to the people who regularly burn sage and smell like lavender and patchouli. And so, on many topics I have become mute. A very hard thing to accomplish when it involves the people you are rooting for.
One time I tried to write out my feelings in the extreme abstract, but in the end I still identified my subject just a little too well. I think the only way I could ever publish that story would be if I removed the last few sentences (which I refuse to do) or if my blog was published completely anonymously with absolutely no ties to the people I know. I think I'm starting to see how easy and enticing it could be to share a personal story with a complete stranger.
During the day I worry too much over the hearts of my loved ones, and at night when my heart is resting, I am able to think of the stories that make me smile. Maybe I should set up the laptop in the bedroom. The last story I wanted to write was going to be called "Pillow Talk". I am very much look forward to reading that one.
Tonight I'll end this entry with the mantra I have for the people whose lives I want to change just a little bit to make me happy. "They are doing what they need to be doing right now. Later they may do something else, but for now, this is what they are choosing for themselves and I love them."
Much love to everyone tonight. I hope all of your hearts are resting easy.
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