My friends, it has been a whirlwind, but productive, couple of days here at the Mayo Clinic. Yesterday I had appointments/procedures at 6:45, 8:00, 11:00, 11:30, 2:00, 2:30 and 3:30. Needless to say, I am sporting the "I may or may not have been run over by a truck" look today. Super glam.
I could bore you to tears with details about the IV drama (3 tries) and the blow torching of my belly button (um...ow), but you've all heard them before and they really mask the heart of the matter at hand here. The truth is, I got confirmation of what my body has been telling me and I have known deep down all of this time. My gastroparesis was never gone. The gastric emptying test I had in January was a false negative. An unfortunate fluke. And honestly, I have to tell you...I am relieved.
I know that may sound odd, and you may be questioning just how much anesthesia I received yesterday, but it's the truth. I feel like a giant weight has been lifted from my shoulders. For months, I have been arduously persevering as I have tried new foods and over and over and over again, I failed. Foods that shouldn't be problematic have caused huge problems and I recently had to go back to all liquids in a desperate attempt to restart my system. I couldn't understand why I was trying so hard and continually failing. My self esteem was at an all time low and I have to admit that I was really starting to question my sanity.
Now I can stop all of that. I can accept what has happened to my body and move on. If I don't want to eat something, I don't have to. I don't have to spend my days forcing myself to eat food that makes me sick over and over and over again. I have both visceral hypersensitivity and gastroparesis, which means that even foods that are "gastroparesis friendly" will often cause problems...a combination that is likely going to lead to a new area of research in the GI department at Mayo. According to my stomach, it doesn't matter what food it is...my body just doesn't want it there. But with that double whammy of gastric hot mess-ness comes the freedom to really eat anything I want. If I want to try something, I can, because some days it might be fine. Likewise, if I feel miserable and just want to have nutritious liquids for a week, that is ok too. The choice is mine and I no longer have to feel like a failure when something as innocuous as soy milk sends me sprinting across the grocery store to the bathroom.
Above all, I can stop searching for a miracle cure that just does not exist.
My life has been on the pause button for far too long and I am ready to hit play. Yes, I have gastroparesis. Yes, I am now forced to make some huge, terrifying life changes, and that leaves me both broken-hearted and hopeful. But who is to say that having a virus cause holy havoc in my body isn't the best thing to ever happen to me? I may not see the reason now, but I know I will someday (ya know, besides the obvious increase in celebrity status and gummy bear consumption.) I may get better tomorrow or in ten years. I may live the rest of my life with gastroparesis, there is just no way to know, but I am finished waiting around and missing out on my life.
I have gastroparesis.
I'm going to be just fine.
Friday, April 27, 2012
Tuesday, April 24, 2012
My dear Rochester
Dear Rochester, Minnesota,
I know you have been preparing for weeks for my arrival. I am a very grounded celebrity and therefore I only have a few very simple requests. First, I'd like to congratulate you on your excellent planning! I am aware that his Holiness, the Dalai Lama, is at Mayo today. What smart planning to schedule him the day before me as a practice run! Anyway, I'd like a brigade of ponies and attractive men to escort me from the airport to the clinic and small adorable children should shower me with gummy bears. Please tell all of the designers who are chomping at the bit for me to choose the new "it" feeding tube backpack, that I will meet with them briefly before my first procedure on Thursday. Thank you ever so much for attending to my very simple requests. I look forward to seeing you tomorrow.
Oh, and please don't forget to have non-fat frozen yogurt raining from the sky.
Smooches!
Lydia
I know you have been preparing for weeks for my arrival. I am a very grounded celebrity and therefore I only have a few very simple requests. First, I'd like to congratulate you on your excellent planning! I am aware that his Holiness, the Dalai Lama, is at Mayo today. What smart planning to schedule him the day before me as a practice run! Anyway, I'd like a brigade of ponies and attractive men to escort me from the airport to the clinic and small adorable children should shower me with gummy bears. Please tell all of the designers who are chomping at the bit for me to choose the new "it" feeding tube backpack, that I will meet with them briefly before my first procedure on Thursday. Thank you ever so much for attending to my very simple requests. I look forward to seeing you tomorrow.
Oh, and please don't forget to have non-fat frozen yogurt raining from the sky.
Smooches!
Lydia
Sunday, April 22, 2012
The Girl with the Miniature Backpack
Ladies and Gentlemen, with respect to Steig Larsson, I'd like to introduce the next (significantly less gruesome and terrifying) novel in the series, The Girl with the Miniature Backpack. The novel stars a girl in her late 20's who, due solely to vanity, has avoided using her feeding tube during the day in favor of sleeping in a frozen position at night so the IV pole does not come crashing down on her head. After her progress with learning to eat again moves significantly backwards, the girl decides to step up to the plate, switch to day time feedings and begin sporting the miniature backpack. The novel documents her trials and tribulations as she climbs semi-patiently to the top of Mount Ilovefoodandwanttoeat and conquers the gastronomic world!
Ok, so maybe this didn't make the New York Times best seller list, and maybe I'm slightly more socially aware than Lisbeth Salander...but hey, it could be a hit!
So, the backpack. It holds my IV bag and feeding pump and the very end of the IV tubing snakes out the bottom to connect to my feeding tube at my stomach. VERY glamourous, I can assure you. The theory behind doing my feedings during the day is that my body, and more specifically my digestive system, is never at rest. I eat by mouth during the day and by tube at night. Allow me to share a comparative pro/con list:
Pro:
-Need a place to stash your keys? Never fear, I have a backpack.
-Want to go on an impromptu hike? I'm ready.
-Out with your hungry baby and run out of formula? Don't fret! I'll hook you up.
-I slept through the night for the first time in over a year!
-Just about every employee at the grocery store offers to help you get your single bag of almond milk and egg whites to the car.
Con:
-Small, protruding objects, such as doorknobs, refrigerator handles and parking brakes are suddenly rather problematic
-I'm attached to a backpack that was created for your average 1st grader for 9-10 hours a day.
-Ok, so maybe it only weighs about 5 pounds, but after awhile, I swear the thing gets heavier.
-When the tubing gets kinked, the alarm goes off...a feeding pump does not have a vibrate option and ONLY goes off during quiet moments when EVERYONE can stare at you.
-No, I didn't pee my pants, my feeding tube is leaking...I swear...
So, it's not exactly my favorite thing in the world, but getting to sleep through the night for the first time in over a year was really kind of fantastic. I really am rather embarrassed to admit that the only thing holding me back from trying this a long time ago was my vanity...and seeing as I spend most of my days in yoga pants and a fleece, there really wasn't much left to lose. Plus, nerd that I am, the backpack has given me the opportunity to do a bit of a social experiment. It has been interesting to see who notices, who doesn't, and how the ones that notice react.
I'm thinking that I could add a new element to my experiment by bedazzling the backpack. Something along the lines of pink rhinestones that spell JUICY across the front? Or perhaps Coach can start a new line of feeding pump backpacks?
Man, my agents are so lucky that I am such a trendsetter.
Ok, so maybe this didn't make the New York Times best seller list, and maybe I'm slightly more socially aware than Lisbeth Salander...but hey, it could be a hit!
So, the backpack. It holds my IV bag and feeding pump and the very end of the IV tubing snakes out the bottom to connect to my feeding tube at my stomach. VERY glamourous, I can assure you. The theory behind doing my feedings during the day is that my body, and more specifically my digestive system, is never at rest. I eat by mouth during the day and by tube at night. Allow me to share a comparative pro/con list:
Pro:
-Need a place to stash your keys? Never fear, I have a backpack.
-Want to go on an impromptu hike? I'm ready.
-Out with your hungry baby and run out of formula? Don't fret! I'll hook you up.
-I slept through the night for the first time in over a year!
-Just about every employee at the grocery store offers to help you get your single bag of almond milk and egg whites to the car.
Con:
-Small, protruding objects, such as doorknobs, refrigerator handles and parking brakes are suddenly rather problematic
-I'm attached to a backpack that was created for your average 1st grader for 9-10 hours a day.
-Ok, so maybe it only weighs about 5 pounds, but after awhile, I swear the thing gets heavier.
-When the tubing gets kinked, the alarm goes off...a feeding pump does not have a vibrate option and ONLY goes off during quiet moments when EVERYONE can stare at you.
-No, I didn't pee my pants, my feeding tube is leaking...I swear...
So, it's not exactly my favorite thing in the world, but getting to sleep through the night for the first time in over a year was really kind of fantastic. I really am rather embarrassed to admit that the only thing holding me back from trying this a long time ago was my vanity...and seeing as I spend most of my days in yoga pants and a fleece, there really wasn't much left to lose. Plus, nerd that I am, the backpack has given me the opportunity to do a bit of a social experiment. It has been interesting to see who notices, who doesn't, and how the ones that notice react.
I'm thinking that I could add a new element to my experiment by bedazzling the backpack. Something along the lines of pink rhinestones that spell JUICY across the front? Or perhaps Coach can start a new line of feeding pump backpacks?
Man, my agents are so lucky that I am such a trendsetter.
Friday, April 13, 2012
Hot off the press!
Coming soon to a store near you!
Ok fine...maybe my awesome friend created this masterpiece and maybe she doesn't actually work for People magazine...details, details.
Thursday, April 12, 2012
Exploring new territory
Last fall, I purchased a Living Social coupon to try out a new acupuncture facility in Arlington. I had heard great things about acupuncture and I always wanted to try it. I think we can all agree that modern pharmaceuticals and I aren't generally BFF, so it was perfect timing to try some alternative therapies.
Fast forward a few months (I got a little busy being on tour in the midwest...such a demanding life as a celebrity) and last week I realized my coupon was about to expire. I made an appointment and yesterday went for my very first acupuncture session. The very kind receptionist had asked me to fill out the medical forms online and bring them with me to my appointment. I carefully filled out the forms, kept the information as concise as possible without eliminating major details and calmly handed them to my acupuncturist when she called me back.
**Glances down at list**
"Ma'am there are too many items on this list for acupuncture session. Why is this list so long?"
"Oh, um, well I've had a bit of a health crisis over the last year or so, but I'm working on it."
"You say you got virus? Why? Did you not wash hands?"
"Well ma'am, I'm a teacher, so I wash my hands about 300 times a day, but sometimes it is unavoidable."
"You be more careful next time, yes? Too many things on list, please choose one area to address."
"Oh, um, ok, why don't we focus on circulation, I've read great articles about acupuncture and circulation."
"No, we will focus on pain today, so I will work your neck and shoulders. Please remove your clothes."
"Um...okay?"
After I awkwardly stripped and received a disapproving "tsk" sound directed towards my feeding tube, I lay down on my side on the table. She asked me if I had ever done acupuncture before and I replied that I hadn't, expecting some sort of "what to expect when you're expecting needles by the dozens" spiel. Approximately 10 seconds later, the needles came out and I found out for myself what to expect. Now, I wouldn't say that acupuncture is painless, as the brochures suggest. That being said, someone with hypersensitive nerves probably hasn't earned the right to decide once and for all whether something typically hurts or not. It wasn't necessarily painful, more bizarrely irritating. After I had been poked and prodded for awhile, the woman turned on a heat lamp, instructed me to take deep breaths, turned out the light and left. Hmm...a forced nap under a heat lamp, eh? I could get used to this!
Small detail that every time I started to nod off, I would feel my body rolling backwards and I would snap back awake in fear of having several miniature needles permanently shoved into my body. I already set off every alarm possible in airport security, I don't need any extra help. I did, however, greatly enjoy the heat lamp and was sad when it went off after about 15 minutes. I suppose that's what she meant when she said something about hot/cold therapy. Sadface.
After about 30 minutes of "forced" nap time and relaxation, the acupuncturist removed the needles and told me to get dressed. She asked me to shrug my shoulders and turn my neck side to side. To my surprise, I could turn my neck farther than I have been able to in months! I'd say that's probably worth an hour of awkward semi-naked needle bonanzas.
Before leaving, my acupuncturist told me that next time we will work on circulation and showed me, on a poster, where she would place the needles. I thanked her for her time and started to leave.
"Oh and we will place several needles between eyes to get blood flowing to brain. Only about ten, not a lot."
Gulp.
Fast forward a few months (I got a little busy being on tour in the midwest...such a demanding life as a celebrity) and last week I realized my coupon was about to expire. I made an appointment and yesterday went for my very first acupuncture session. The very kind receptionist had asked me to fill out the medical forms online and bring them with me to my appointment. I carefully filled out the forms, kept the information as concise as possible without eliminating major details and calmly handed them to my acupuncturist when she called me back.
**Glances down at list**
"Ma'am there are too many items on this list for acupuncture session. Why is this list so long?"
"Oh, um, well I've had a bit of a health crisis over the last year or so, but I'm working on it."
"You say you got virus? Why? Did you not wash hands?"
"Well ma'am, I'm a teacher, so I wash my hands about 300 times a day, but sometimes it is unavoidable."
"You be more careful next time, yes? Too many things on list, please choose one area to address."
"Oh, um, ok, why don't we focus on circulation, I've read great articles about acupuncture and circulation."
"No, we will focus on pain today, so I will work your neck and shoulders. Please remove your clothes."
"Um...okay?"
After I awkwardly stripped and received a disapproving "tsk" sound directed towards my feeding tube, I lay down on my side on the table. She asked me if I had ever done acupuncture before and I replied that I hadn't, expecting some sort of "what to expect when you're expecting needles by the dozens" spiel. Approximately 10 seconds later, the needles came out and I found out for myself what to expect. Now, I wouldn't say that acupuncture is painless, as the brochures suggest. That being said, someone with hypersensitive nerves probably hasn't earned the right to decide once and for all whether something typically hurts or not. It wasn't necessarily painful, more bizarrely irritating. After I had been poked and prodded for awhile, the woman turned on a heat lamp, instructed me to take deep breaths, turned out the light and left. Hmm...a forced nap under a heat lamp, eh? I could get used to this!
Small detail that every time I started to nod off, I would feel my body rolling backwards and I would snap back awake in fear of having several miniature needles permanently shoved into my body. I already set off every alarm possible in airport security, I don't need any extra help. I did, however, greatly enjoy the heat lamp and was sad when it went off after about 15 minutes. I suppose that's what she meant when she said something about hot/cold therapy. Sadface.
After about 30 minutes of "forced" nap time and relaxation, the acupuncturist removed the needles and told me to get dressed. She asked me to shrug my shoulders and turn my neck side to side. To my surprise, I could turn my neck farther than I have been able to in months! I'd say that's probably worth an hour of awkward semi-naked needle bonanzas.
Before leaving, my acupuncturist told me that next time we will work on circulation and showed me, on a poster, where she would place the needles. I thanked her for her time and started to leave.
"Oh and we will place several needles between eyes to get blood flowing to brain. Only about ten, not a lot."
Gulp.
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