Wednesday, December 31, 2014
I had never looked at them as such an inconvenience. I always loved coming home and seeing someone had called and left a message, letting me know I was thought of. That's the kind of messages I leave. Yes, they might ramble. Okay, not so much might. A sort of exercise in free form messaging. Just my way of telling you how much you mean to me, right in that moment, before I don't get another chance. Because who knows? Long ago, in the 1900's we used to send letters and cards in the mail. That might happen once a year or twice if you have loving and older family that send Birthday cards. Now, people don't even want messages on their phones. Maybe I should just write it all in blogs.
Thursday, December 18, 2014
I knew that the Santas at the Mall weren't real. They were his helpers, duh. I asked all the usual questions kids ask about the improbabilities, the incongruities and down right impossibilities. But the truth is, even as I grew older, and my friends told me there for sure was no Jolly Fat Man that circumnavigated the entire world in one night and gave presents to EVERY CHILD (we won't get into the chimney discussion see The Muppets Christmas Special for that) I knew he was real because every year I met him. The real him.
At our yearly Strong Family Christmas Party (or The Santa Party) the four Strong daughters Shirley, Joanne, Carole and Claudia, and all of their children, and their children's children, and so on, gather for a Christmas program, treats and the penultimate meeting of the Santa. I mean THE SANTA. He has a Good Book that knows things only a Santa can know. How you talk back, or how you are doing so much better in Social Studies this year (remember Social Studies?) He knows that you missed a lot of school because you were so sick and he wants you to listen to Mom and Dad and take care of yourself, he knows you have a brother and step-sister and you love them even if you fight with them. He knows about you and he is kind and you can see your name in his Giant Red Book as you sit on his knee. You watch it happen for all of the other kids at the party and he sings and dances and tells jokes too. He is a giant red wondrous ball of joy and he's real and he's right in front of you.
So what if one Christmas Eve I hear my parents giggling in the hallway TRYING to be quiet (but making it so much worse) as they attempt to put together a huge cardboard playhouse for Todd before my brother and I wake up at the crack of dawn and it was supposed to be from Santa? I still believed in Santa. So what if THE ONLY TIME Todd and I snuck and looked for our Christmas presents, it was the one thing I wanted the most in the whole wide world, a Cabbage Patch Doll, and it came from Santa on Christmas morning all displayed in my baby rocking chair and baby blanket? I still believed.
I finally found out, officially, when I was looking up a phone number in my Mom's little blue phone book. My mother has the most beautiful penmanship so the entire phone book was filled with her hand. I don't even remember what number I needed but as I was scrolling through then all of a sudden there it was, SANTA printed out with an 801 area code. My mother never uses print, and Santa's cards always had a different writing on them. I didn't feel duped, or stupid. I didn't feel lied to. I felt loved and protected. I felt adored. I still do.
I still believe in Santa. My Santa is the magic warm glow that fills me up when I am with my Family, Friends and Furry Fuzzies. I can't wait for Santa to visit this year.
Friday, December 12, 2014
Me - "Grease. Grease is the word, is the word that you heard. It's got groove it's got meaning. Grease is the time, is the place is the motion. Grease is the way we are feeling."
Doc - "Huh?"
Me - "You asked for the word. I gave it to you. Grease is the word."
His nurse is typing, and silently laughing. She pipes up "From the movie. You know, Greased Lightning?"
Doc - Fully serious and not at all exasperated,"Ah, I don't watch many movies. I slept on the couch last night. Watched Napoleon Dynamite again. That's about all I know for movies."
Thus began my appointment.
Wop baba lumop a wap bam boom.
Wednesday, November 19, 2014
Next I say that if I was in the Zombie Apocalypse I'd never make it because I have no skills to bring to the table other than making pretty decent soup and having a vault of entertainment trivia for use around the fire. But he says I would be of great value, at least once. When the group pushes me down as a distraction for a Zombie herd to eat so everyone else gets away.
He's going to write to the show to suggest my part.
Tuesday, November 18, 2014
It would be early morning, before school and you would hear this "AGHHH HEIDI!!" I knew. I'd try to protest, feebly, but it never eased his disgust. I could have done a better job cleaning up after every time I brushed my hair, but I didn't. It was really only one of a handful of ways that I GOT TO DRIVE HIM MAD! So, I waited for it. And I loved it.
Today I combed my hair out before my shower and as I was cleaning the hair off my floor, I never missed my brother's stinky feet more.
Friday, November 14, 2014
Today was my six month check-up with Dr. Soisson at Huntsman. Of course, my wonderful and supportive Mother was there. I couldn't have done any of this without her. The visit was hopeful, quick and pretty much painless. I haven't been using my dialaters so he was teasing me by showing everyone how he had to use the tiniest speculum he had. Of course there were students and residents in the room so they had to get my back story, check out my scars and radiation tattoos, talk about Ehlers-Danlos Syndrome and some of the new issues that go along with having EDS.
Most recently I dislocated my ribs on the left side and I'm just in ridiculous pain. It was in full force today during my visit, with my left leg as well. I told him about how my physical therapist has tried to gently put my ribs back into place but ever since then I've had (get ready for it) a buzzing butthole. A Buzzhole. So, apparently the song should go "The ribcage's connected to the butthole." Needless to say, everyone was laughing and he doesn't feel it's connected to my cancer diagnosis. He feels strongly that if my cancer would have come back it would already have done so.
As I'm at the check out desk waiting for my next appointment I made a joke to my Mom "Well, that was like the WHAM BAM, Thank you ma'am of pelvic exams." The receptionist starts laughing so hard she starts crying. We talk about what a great Doc he is and then I say "It's not really appropriate to say he gives great pap, but truth is he does." She agrees and said you'd rather have people say that than complain.
Then, even after all of that, all the ridiculous amounts of pain I'm in, the grunts and squirming faces, the inappropriate talk and giggling, the receptionist comes back and looks me right in face and declared "You are just so pretty." It took my breath away. My mouth hung open and then I started to cry. I thanked her and said what a kind thing to say, because for the past two weeks I have felt anything but pretty.
Now I'm home, in bunny hair covered sweats. Maybe a little high. But, I tell you all. I feel beautiful.
Saturday, November 1, 2014
Today I was thoroughly enjoying a play at the Pioneer Theatre, once again my Mom and I being the loudest ones laughing. Today I celebrated World Vegan Day by filling my cart with vegan yumminess at Trader Joe's. Today I listened to stories from my Mother of her family traditions at Christmas and we smiled and laughed some more. Today I was grumpy, today I was sad, today I was silly, today I was grateful, today I was loud, today I was quiet. Today I was.
I don't get to pass stories of my own quirky traditions on to my own children. What I do get to do is share with my friends that are family and family that are friends.
I also get to see the sun set on the Mountains and think of Grandma Hollister. Today. And all the days.
Sunday, October 19, 2014
I can't even really and truly convey how much peace of mind it gave me while I was away, so I could truly be in the moment and enjoy my Aunt, Cousin and Mom in a new scenery and get to know them all over again. To be so lucky to have people I love take care here and understand how much I love my guys, is immeasurable.
I highly recommend loving people, going on road trips, laughing, taking alternate routes, trusting, laughing some more, snuggling bunnies and hugging. Oh, and smiling is my favorite.
Saturday, October 4, 2014
I lose it. Just bust up. I look at the woman and say "From here that sounds mighty interesting." Worker pauses, puts her hand over her mouth, doubles over in laughter and finally responds "Guess I should check what I say around customers better." Me - "At least the ones with filthy minds."
The two workers left to the next aisle. I could hear them giggling and one whispered "that was so funny I can't stand it."
Sunday, August 24, 2014
Today is also the anniversary of when my Stephie stopped being alive. Nine years ago. I know it's not the big ten, that is usually the one to get marked, but something happened recently that got me missing her even more than usual. I was spending time with Sissy's kids and I started to tell a story that involved Stephie when only her oldest Taysie remembered her. I felt gutted. No spark, no tiny piece of memory from them. Nothing.
They are missing out on her and she on them. The giggles, the jokes, all the family parties with the wretched verses of Happy Birthday that can make your ears bleed. Her tiny feet and hands. Her smile. Purple, always purple.
It's tragically and beautifully strange, because her funeral was during the time of Hurricane Katrina, and I kept thinking how lucky we were to have her body to bury. Now, every year the anniversary of Katrina and all of that misery is mixed with those memories of sitting next to her special purple casket and being so grateful, and now it is mixed with such longing and sadness for everyone that doesn't get to carry the silly and fun memories of her around with them everyday.
Some may want to comfort me with platitudes of how it was her time or she's in a better place. Don't. I'm comfortable being uncomfortable about My Stephie no longer being alive. What does give me comfort is sharing stories of her, remembering her, and being here to love and enjoy all the things of life I know she would. Each and every day.
Tuesday, August 5, 2014
As a teenager it felt like the world was picking on me. Giving me another thing on top of all the things. Being a teenage girl, in this beauty obsessed culture, surrounded by such pretty friends (I secretly hatched a plot to get less attractive friends so I could be the Queen of the Uglies) you constantly measure yourself. We, I, still do it. Facebook, Instagram, Selfie Sundays... #NoFilter, it's the same. The saying "Put your best face forward" in this society that makes snap judgements, either giving credit for beauty from the lottery of birth and then conversely assigning blame for unattractiveness. I was doing it. I do still, with Thor.
Truth is, to have a face at all, an actual functioning face with teeth and a nose and lips and both eyes and both ears without a terrible malformation that you can utilize to communicate with the other people in your life if you are lucky enough to have some is not only more than some people have, THAT is putting your best face forward.
So many people tell me I have a terrific or a beautiful smile now. It doesn't have anything to do with my teeth, or the years of braces and headgear. It's because when I smile I mean it.
Monday, July 28, 2014
It is selfish. I know that. Up until then I had always viewed watching the news as a civic payment for being part of the global community. But it cost me. Way, way too much. I would sometimes end up crying by the end of a broadcast, seeing the horrors of the world on that particular day. Feeling so connected to everything then translates into feeling responsible, and when you are limited, helplessness starts to creep.
I'm looking to flip that script. There is good news out there, every day. Happy news. It just doesn't get the headline coverage it deserves. There are never the statistics of how many people didn't die of lung cancer last year at the top of the hour, or how many people made it home alive during rush hour traffic without incident. How many kids had wonderful days today, without being bullied? Just the other day every single person I smiled at, for the entire day, smiled in return. Two young men held the door open for my Mother, one as she entered the bank and one as she left. My handyman gave me two ears of corn, just because. People grew a garden, fathers played with their kids, horses ran in the field, crickets chirped, the stars shone and music rang out.
Politicians say racist and bigoted words in front of cameras, bombs fall, people die of horrific diseases in lonely ways, and children starve. This will more than unfortunately never stop. It will be reported. I'm not choosing the ignorance is bliss side, I'm choosing bliss. Share bliss. We have as much of a responsibility to share the beauty of being alive as the top story as any other.
Thursday, June 19, 2014
Much like Zeus with Athena, I woke up this morning with a fully formed blog post sprung right from my head. I'm not claiming to be a god, or this post a goddess, but it's creation does rank with the mythical. Worship as you see fit.
I've never been a good video game player. In fact, I've never made it past the first level on the original Mario Brothers. Todd would soar through that blasted thing and I would sit there, so frustrated, stuck at level one. I'd keep trying. For a good long while. Then when I couldn't feel my thumbs, I'd go to my usual position of Couch Cheerleader. I'd do the same with that Crash Bandikoot (sp) thing. Ooooohing and aaaaaahing, being amazed and exasperated in tandem. I do it now, with his much more sophisticated games. I'm still really a twelve year old in many ways.
It's easy to get disgusted when you/we watch people excel, comparing those imaginary societal high scores with what feels like your last life on the first screen. What's not easy is tiring your thumbs out giving everyone thumbs up just for playing the game.
Thursday, June 5, 2014
Early April of 1986, just before I turned 15 I spent a couple of nights out in the fields next to our house in Idaho, in my Dad's Toyota 4-Runner, clutching binoculars and hoping I'd get to see Halley's Comet. I thought it was providence that the comet was coming so close to when I was born. With Mark Twain dying on my Birthday, the final bookend to his story that began with the comet coming on the day of his birth meant it was going to happen. This was a part of my story.
I never saw the comet. I looked and looked. I waited and waited. I had the coordinates, I had the equipment. It just never happened. I took this as a serious defeat. It still saddens me to think of this young girl staring into the heavens for hours on end, alone, knowing that she will never live to see her wish.
I may never see Halley's Comet, even if I live to 2061 and at 90 years of age my eyes are working well enough to see this marvel, what I know NOW is I don't want to miss all the wonders happening right next to me. I don't need binoculars for that.
Sunday, June 1, 2014
Went over to my cousin's house to play games and hang out today. Her good and longtime friend Nadine was there with two of her kids as well. We giggled, talked, ate, got competitive and corralled kids. Their plan for dinner was a meat based dish so I took a quick trip to get a couple of burritos. Nadine rode shotgun.
As I made my order (bean burritos, with red sauce, no cheese, add onions and lettuce) Nadine looks at me like I'm from Mars.
Nadine -"So, you don't eat cheese."
N. - "Or eggs."
Me - "No."
N. - "Not even yogurt?"
Me - "I eat almond milk yogurt."
N. - "They make that?"
We both start to giggle and I tell her how the last guy to hit on me was a guy 20 years younger, undoubtedly a meat eater and at least five inches shorter. We didn't even get to the health issues. I'm just left as the Jolly Green Vegan Giant.
Me - "What do I have in common with a guy like that?"
N. - "What do you have in common with any guy?"
Nadine just summed up my spinsterhood in one sentence.
Thursday, May 29, 2014
I think I need to be chaperoned at the grocery store. Last time I was hit on while picking out bananas, this time all I wanted was some vanilla almond milk yogurt. The local Harmons is the only store that sells this brand, so it sells out quickly. So, as I stand in front of the cleared out spot trying to decide if I'll condescend to pick up the inferior strawberry, a worker man pounces on the weak prey. In an attempt to get a case of this precious yogurt (his suggestion to prevent missing out on future trips) I now know his life story.
He juiced for two months, lost 18 pounds, his son hates vegetables, his daughter lives with him but his son doesn't, he loves kale and smoothies and there is so much more. I mostly just stood there nodding. Smiling.
I knew I had to give him my number for the case of yogurt and all I could think was this is getting ridiculous. Then he asked if I knew about these special juices and I told him it was okay, I didn't want to take him away from his work but he insisted. He walked me to the front of the store and showed me each juice.
I'm not looking people in the eye anymore. Or smiling.
Wednesday, May 14, 2014
So today started out pretty craptastic. I'm walking to my car, on my way to pick up my Mom for our trip to Huntsman for my 6 month check-up to make sure all that mean 'ol cancer is still gone, when what do I see but someone had backed into my car and not done a damned thing about it. I just stood there, starring. Disbelieving. Not really disbelieving, because people suck, but stymied nonetheless.
I was stressed to start anyway. Last time they found "something." Would there be another thing, and will the thing really be a thing... and so on and so on. Now I have a stupid frakking hit and run bastard neighbor to fret over. That said, My Mom deserves many medals. Many.
We make it to Huntsman, get in quickly, pants off, on the table exam over, things look good. We did have to wait an hour for prescriptions that never happened, but we were compensated with piles of snacks. The drive home was much better, my cheesy 80's Glenn Medeiros full volume altered my mood greatly. My Mom giggling the whole time as I sang every word.
Back at my parents' house, my Dad helps clean up the bumper and tries to wax out some of the scratches. But it is scratched down to the primer. A paint job is necessary and my deductible is $500 since it is a collision. The amazingly friendly agent from the 800 # even called back to see if it could possibly be vandalism, but it is clearly a car that hit me. Just vandals driving.
Here's what's good out of all this: My doctor didn't see any thing to worry about right off and we just have to wait for the test results, no one was in the car and no one was injured, the car is drivable, Glenn Medeiros is available on CD, My Mom's giggle, snacks, My Dad's amazing stocked garage, friendly insurance agents that laugh when you laugh and console you when you cry after a long long day, and your ex neighbor Misty calling to ask to go lunch on Friday.
Sunday, May 11, 2014
My brother is moving to Houston at the end of this week. He just recently became an official Pro in the PGA. He will be teaching golf at a golf academy. My brother is following his dream. I am proud of him. I admire him. I love him.
Don't confuse this praise for absence of sadness. I don't think I really understand how sad I am that he is leaving. Today, he picked me up and we went to our monthly family party together. We joked, we laughed, we did our thing. OUR thing. I know it was supposed to be Mother's Day, but for me it was Brudda's Day.
Yes, he's a butthead. But, he's my butthead.
Thursday, May 1, 2014
I'm cleaning my blinds, getting ready for the installation of my airconditioner later this afternoon, and I start to think back to my blog about the joy of dusting. Wiping the film off each blind and sweating under the sunlight I think I might want to recant my previous statement. Then the next song plays. I always play music when I clean. It's Toad's "Life is Beautiful."
I'm sticking with my original story.
Sunday, April 27, 2014
So, I just almost got the Heimlich from my brother. We just started dinner and on my first bite I started choking. It was a small piece of a plain veggie burger, but somehow it went down wrong. Coughing and coughing, he wanted me to tell him if I was choking, but I was too busy choking. He said "You're turning BLUE!" I got up and ran to the bathroom to cough/vomit it up. My throat is still hoarse from it.
Todd says I needed to communicate that I was choking better. You know, the hands to my throat motion. I counter with I was too busy choking to figure out signals. Simply, I think I scared him. I scared me too.
What's interesting is that this happened while I was eating at my parents' house. I've been sensitive to a single person choking alone for years. Somehow, I don't think Peanut nor Pickle would be much help in a repeat situation.
In a second people. In a second.
Friday, April 25, 2014
I'm at physical therapy late this afternoon and the assistant is a girl I haven't worked with before. We're talking about how this is her last day; she's going on a long trip first to San Diego then Hawaii with her Mom, followed by Ireland and Spain with a friend and cousin. While in Ireland she's meeting up with a "friend" and she's really excited. I ask how she met this friend and she gets shy and giggly.
PTA - "You're gonna think it's sooooooo weird. We met on Call of Duty." She scrunches up her nose and eyes just waiting for my judgment.
Me - "No, that's not so weird. People have met in much stranger ways."
She rushes to get her phone so she can show me his picture. She is gushing by now. Tells me how they talk everyday and that they met another time a year ago.
Me - "All you hafta do now is make sure he knows it isn't a Call of Booty."
In between the spurts of laughter she exclaims "Why am I JUST meeting you NOW?"
Sunday, March 30, 2014
Dad - "I could write a poem in five minutes and have it accepted by any of them."
Me - Laughing "Well, alright then. I'll get you the information."
Dad - "Did you notice what I did there? You just have to go through life knowing you are better and smarter than 99.5% of the rest of the population."
When we go up to get our drinks the barista told my Dad not to worry about paying because it took so long (she was alone and working the drive-through too.)
My Dad gave her a ten dollar tip.
Friday, March 28, 2014
So today started early, and the tone was banana-balls. My Mom drove me to the ER at 9 this morning, had a CT scan, peed in a cup, let a newbie sick me with needles: The most excellent news is that the crazy awful pain I had in my abdomen that woke me from a sound sleep (of course it was on the couch seeing as my whole closet was having a siesta on my bed) WASN'T from an Abdominal Aortic Aneurysm, there is no kidney infection but whatever is causing this pain is coming from the kidney. I am seeing my urologist on Wednesday.
As soon as we left we high-tailed it back to my apartment in hopes to catch a handy-dandy maintenance man to help with my closet. Lucky for Mike, he pulled into the driveway right after us and he was blessed with the task. As he walked into the bedroom and saw my whole closet piled high atop the bed he explained "Holy Shnizzle."
Then there was long needed grocery shopping, The Moms taking the reigns as I was loopy on Ativan. Then the putting away of the groceries. Then we proceeded to organize and edit my closet layout and its contents. We swept through that puppy in just over an hour. My Mom is an organizational Rock Star. One bag of clothes to the DI and one to a family member, I have a much more streamlined dresser drawers and closet.
Now I'm even higher on Ativan, eating potato chips, blogging and watching the NCAA Sweet Sixteen. My Mom's Basketball Coach Boyfriend Rick Patino is on my t.v. machine. Fo shnizzle.
Wednesday, March 19, 2014
I dislocated my right knee in my sleep. All I did was turn over, I wasn't doing any Ka-Raw-Tay moves in my dreams or anything like that. Just MY body being MY body. Trouble is, it either isn't all the way back in joint or there is some other damage. It keeps sticking in the bent position and then I scream for a bit, then try to maneuver it flat/straight. Going to see if I can get in for an appointment and an X-Ray tomorrow.
It is my good leg as well as my driving one, so I didn't get over to the house to do my bracket in person. My Mom filled mine in over the phone so my Dad and Todd can't accuse me of cheating for doing it on the day March Madness starts. I'll just say that I love watching the 8 vs 9 games, but picking the winners can make or break your whole bracket. I'm already feeling the excitement for the tournament, and twinges of regret for some of my difficult choices.
On my neighbor Misty and the kitty She-Ra front, there is much drama. Misty is miserable, the kitty is now outside somewhere. I have been driving around looking for her after the other neighbor Tanky McDrunkerson let her out because she was too busy being drunk to bother to get litter, then she complained that She-Ra peed on her couch. I gave her a litter box, food bowls, (Misty gave her a huge bag of food) but she bought beer instead. I have since bought more kitty food, more litter (in case she comes back they won't have an excuse until I can get She-Ra to Misty's brother's) and have the food and water outside my door hoping she'll come back. Misty finally returned my call today to say her brother wants the cat, this was after two phone calls were intervened by the boyfriend. Misty just can't function like a lot of us, I don't hold her to the same expectations. Not having her cat with her is actually destroying her. When she showed up here so desperate and not knowing what to do, she asked me to kill her. Truly.
I mistakenly have high expectations of people, often. Which in turn leads to disappointment. My Mom keeps on telling me I can't save everyone. Even if I know this, an innocent animal is suffering because no one is being a responsible adult here. Misty needs care. She-Ra needs care.
Sometimes, there aren't enough Oreos.
Saturday, March 15, 2014
Just now watching boxing with my parents my Dad and I start mocking one of the announcers for saying "He's here for a win." No, really? How deep did you reach down for that nugget? We the viewers wouldn't have figured that it by our teeny selves. Then I stop and say how these announcers have a lot of air time to fill, we should give them a break.
Me - "I'd start talking about their trunks or their socks. 'Oh, did you see the tree on his sock, that's a tree.' Or I'd start in on the audience. I'd run out of things to say."
Dad - Starring at me dumbfounded. "You'd run out of things to say? That would never happen."
Me - "Okay. Pertinent things to say."
Dad - "Never been your strong suite."
Dad for the TKO.
Thursday, February 20, 2014
I have two rare congenital disorders, called Ehlers-Danlos Syndrome and Thalassemia (minor) With the Thalassemia my red blood cells are malformed, the hemoglobin cannot carry the iron so supplements aren't an option. Too much iron in the blood stream and I'll go toxic. This was diagnosed at birth. I was such a sick infant, they literally showed me to my Mother, flew me to another hospital, gave me a transfusion and kept me in an isolate for days and days. My Mom didn't even get to touch me until I was out. Since filtration of the blood is more difficult my spleen is always a little enlarged. (No real biggie, I don't poke back there too much.) My immune system is a little compromised by the anemia but what really doesn't help is the next paragraph.
The Ehler-Danlos wasn't diagnosed until I was about twelve at the Mayo Clinic. But the freaky nature of the disorder had been on display for years. Many broken bones, multiple joint dislocations, I could clasp my hands behind my back and then bring them all the way to the front with my hands still clasped rotating my shoulders nearly out of joint. I was the school yard circus show. With Ehlers-Danlos comes some heart issues, A Mitral Valve Prolapse that gives me supra-ventricular tachycardia and premature atrial contractions. (Not going to have a heart attack but I can't go a day without meds either) It affects my bowels, my skin (scar easily) my teeth, my uterus (when I had one) veins, arteries, and of course joints. My Mom says it should be called It Sucks Syndrome. My knees, hips and shoulders have been primarily affected. I've had one knee surgery to tighten my left knee from all the dislocations. Most recently, during my Uretal Reimplantation after The Cancer, the surgery team dislocated my left hip. If I'm not careful I can do this stepping out of a car wrong. As an ED patient grows older certain things need to be kept under surveillance. There are certain types of ED and I cross over into two, one of them being a more dangerous set. This means I am more susceptible to a Triple A, an Abdominal Aortic Aneurysm. I am lucky to have such wonderful Docs that care and keep up with new techniques. There have been times in my life when I have gone to the ER (I was younger) when the Doctor had to leave the room to look up my disorder in the DSM.
To the pain. (If you thought Princess Bride, POINTS!!!) Ehlers-Danlos brings a lot of pain. Mine focuses mainly on my left leg, where most of the trauma has been. Sometimes it can be the whole left side of my body. It can be for just a few days, a week, a month. The truly, truly frustrating part of the pain (aside from having it pure and simple) is how it interferes with life. Function ceases. Activities cease. One thing about sharing this information, letting people know about living with such disorders, is that what a disorder it can make of your life. The feeling of embarrassment does not go away after years of practice telling people you can't go to a function because you haven't been out of bed for days.
The goal of this post is to share information, not only on the two disorders that affect my life, but that affect others out there as well. National Rare Disorder Day is February 28th. I'm a mutant, and my Mother says so!
Now, to the love. I have been loved so much, and had so much care taken of me. It is immeasurable, and impossible to repay. Thank you for always knowing why, and even if you didn't, you never asked.
Bonus Blog Round: When I type Thalassemia it asks me to correct to Tallahassee.
Thursday, January 30, 2014
If only there was a deadline and I was going to be graded, or I had a little drill sergeant over my shoulder that I could resent. Wait a minute, I just confessed all this to you guys. Damn. Guess I got what I wanted?
Tuesday, January 28, 2014
So, it shouldn't be a surprise that when I reach the Cashier with my toilet paper and my Bunny Ears that a fantastic interaction occurred.
Cashier - Struggling with my purchase, moans.
Me - "It's okay. After a certain time of day you shouldn't be required to count."
Cashier - She dives into a detailed story about how her shift ends in 15 minutes, how she needs to be up the canyon 1/2 hour after that. She knows she is going to be late. She just knows it.
Me - "Sometimes, it takes a village. Together, we can DO IT!" I clasp my hands together in a sign of hope and solidarity.
Cashier - Takes my money and gives me too much change. A quarter instead of a nickel.
Me - Laughing. "It's okay. Just keep it."
All the while, the woman behind me watching this is smiling. She reaches into her purse, pulls out a nickel and gives it to me.
Woman - "You never know, the next place you go you might need that one nickel!"
Me - I shake my fist "If only I had that nickel... arghhhh!"
The two of us are laughing.
Cashier laughs nervously but I finish with raising my arms in triumph and announcing "See, it does TAKE A VILLAGE!"
Tuesday, January 14, 2014
So, I go to Peery's Egyptian Theater this afternoon to buy tickets for Sundance. While perusing the big board that displays movies and times, I notice a woman to my right with a big professional looking camera snapping pictures of the whole hoopla. I step back to get out of the way, but no, she asks if she can take my picture. I have on no makeup, I basically just washed my hair and let it air dry so it is a long damp frizzy mess, AND my nose is bright red from blowing for three days straight.
Sure. Be my guest. She gets my name, followed me around the lobby and took pictures WHILE I bought my tickets too. Wherever these pictures show up, the Standard Examiner or Best of Ogden, there I'll be. Smiling like I won the lottery because I got my tickets, but looking like I don't own a mirror.
Life may not be a fashion show, but some days it pays to be fashionable.
Wednesday, January 1, 2014
The British superstition of saying "Rabbit, Rabbit, Rabbit" at the beginning of the month to set the mood right, plus the added New Moon happening on the first day of the year for the first time in 19 years, it being Hump Day (insert bunny joke) and as I type this my Black Eyed Peas are cooking on the stove while Jeff Buckley's "Hallelujah" plays gracefully over the whole scene.
I'm not going to knock on any wood. That's just silly.