Tuesday, January 31, 2012

Considering a new career...?

Well friends, today I completed part 1 (of 2) of my allergy and venom testing. Today was just venom and tested the severity of my bee, wasp and hornet allergy. As I've mentioned before, I've been getting venom therapy injections for the last five years. While it appears that the injections have screwed with my vascular system, it would be nice to know that they were at least a bit effective in diminishing my allergy as well.

For those of you who have been blessed to never endure allergy testing, allow me to explain. Typically a tiny amount of an allergen is dropped onto your skin, and then the skin is either pricked with a needle or injected just under the outermost skin layer. The size of the bump (hive) and overall reaction (flare) are used to rate your allergy. I personally think the flare should be spelled "flair" as it was just another way that Mayo has decorated my body- today with bright, red, amoeba-shaped splotches.With bee, wasp and hornet testing, the nurse starts with an extremely low dose, then moves up a level and then one level more. Currently, my right arm looks like I have an extremely organized and localized case of chicken pox.

The bad news? I'm still allergic to bees, wasps and hornets. However it is still possible that the allergy has at least decreased a bit (have to wait until I meet with the doctor next week). Perhaps I'll need to bedazzle my epi pen if it is going to stick around.

The good news? I'm not allergic to honey bees. Yippee Skippee. So if I decide to switch careers and raise honey bees, then I am SET. Thankgoodness.

This afternoon, I went standby at the Pain Rehabilitation Center. The PRC is mostly for people with chronic pain, be it back pain, migraines, fibromyalgia, etc. But it is also for people who are learning to rehabilitate their lives after a diagnosis (or in my case, multiple diagnoses) has turned their lives upside down. The beauty of learning to retrain my brain here, is that I would be under the care of a doctor, dietitian, physical therapist and behavior medicine therapist all in one place. At home, I can certainly find people to fit all of these roles, but not in an organized setting where they all communicate and work together. Seeing as it would mean spending more time in Minnesota, I'm guessing "freeze therapy" will be incorporated into my rehabilitation.

The only rock in the canoe is (prepare for a shocker here), I am exceptionally unique. The PRC has never had a patient quite like me...and they need to make sure they can properly accommodate my fame. For example, one element of the PRC is finding ways to get patients off of pain medicine...which clealy doesn't apply to someone who can't even take advil.

So I met with the head of the department (duh, when you are a celebrity, you jump right to the top) and it was a fabulous meeting. I felt heard and I felt uplifted. While I know a lot about nutrition and am absolutely, positively determined to get well, I haven't the first clue of where to begin. The department head is going to talk to the head physican and the appointment coordinator (who, like most places, is actually the true boss) and see if they can both accept me and design a program that would work just for me. Keep your fingers crossed friends!

Monday, January 30, 2012

Roll out the red carpet!

Well friends, my fame grew even greater today. No, I did not turn a new color or confuse any new doctors, but I did become a part of legit medical history! The Mayo Clinic has been working on developing a new SmartPill test for GI motility and today, I was the very first person EVER to try it out. Literally, I drew a crowd. No big deal.

Some of you may have heard of a capsule study that involves swallowing an itty-bitty camera and looking at the beautiful images once you pass the pill. This new SmartPill measures the pH, pressure and temperature changes of your GI system as the capsule goes through your body and in doing so, they are able to pinpoint the exact location of an issue and what changes are occurring internally at the time. Pretty genius, huh? The signals are recorded on a pager that looks like a Zack Morris flip phone from the 80's...try to contain your jealousy.

The first thing I had to do was eat a SmartBar...so of course I asked if my IQ was going to rise...still waiting for an answer. I was pretty excited because the bar looked like a deflated and mangled power bar, but actually tasted pretty good! The next task was harder...swallowing a robot the size of a thick bullet (and when I say robot, I'm literally not kidding. You could even see the microchip). Those of you who have known me for awhile know that I spent most of my high school years learning to swallow a pill...but nothing could have prepared me for the big kahuna of today. A couple of gags and horrified looks from my growing crowd later, the robot had headed South and begun his journey through the vast expanse of my hot mess self. My crowd clapped, I gave a few dazzling grins with princess waves and that was it! So in a nutshell, I'm basically a genius now.

This afternoon I met with Behavioral Medicine. This is the first step towards recovery, so I've been anxiously awaiting the start...let's rip this band aid off and get crackin! If by "get crackin" I meant, "let's chat about some options that we will use if the following 10 doctors sign off on it" then we are on the same page now. Fiiiiine. I'll be patient.

In actuality, the appointment went really well. I met with a doctor and nurse combo from 1:00-4:00 and they went over everything. My brain boot camp will include a cocktail of drugs to decrease the severity of the reactions in my brain, in addition to some overall rehabilitation of my system-i.e. physical therapy for my veins, painfully slow introduction of foods, etc. Imagine if you were speeding out of control down the highway and then tried to suddenly throw the car in reverse...it wouldn't go so well. First you have to slow the car down and then you can slowly start to reverse. Phase 1 will be slowing down the reactions in my brain (don't worry, this won't diminish the vast increase in intellect that I added today). Our bodies are amazing places and when we are healthy, our systems work together seamlessly. In my case, my systems don't really work so well together right now and they need a bit of mediation. My brain, in this case, is the mischief maker. For example, when you stand up too quickly and your heart races, eventually your brain signals your body to slow down your heart rate. For me, my brain takes every opportunity to be an amplifier and riles things up, instead of settling things down. My radio volume is on too loud and the radio is playing a song, without even receiving a signal (although, I do appreciate my body's desire to sing).

Phase 1 is going to take a long time. I'm not talking days, or really even months. This is most likely in the year+ category, because my hypersensitivity extends to pharmaceuticals as well (this weekend I learned that Viagra and I will not be wearing any BFF necklaces). It is going to take a long time to find a type and dosage of drugs that I'm a) not allergic to, b) don't pick up any bizarre side effects to and c) is actually effective. Details, details.
In the mean time, my intellect and fame are growing exponentially...the way I figure, soon enough I'll be so ridiculously smart and famous that I can retrain my brain all on my own. Pack the trail mix, this hike is totally in the bag.

Friday, January 27, 2012

Earning my A's and B's

Today was a pretty low-key day. Around here, you can be a "checker," or as I call it, "go standby" on future appointments. I tried to go standby this morning and was unsuccessful. I did however, succeed in making enough progress on my cross-stitch that it is starting to resemble more than an amoeba and I got some excellent people watching accomplished, as I was in the waiting room with a family of 13 kids (who all met with a doctor, one by one).

Next I went back to the Ultraviolet Light Treatment center for my results from yesterday's Minimal Erythema Dose test. My left leg hadn't changed colors at all, which indicates that I am not hypersensitive to ultraviolet B rays. You can, however, play an organized game of checkers on my right leg, which indicates that I am hypersensitive to ultraviolet A rays. So where does that leave me? Frantically trying to invent some sort of protective sunscreen that only blocks UVA rays...I'll let you know how it goes. Has anyone else noticed that Mayo seems really dedicated to turning me every color possible? Maybe they sense my inner studio art major...

In the meantime, my internist, vascular doctor (vasculist?) and rheumatologist all decided that they want me to try Viagra, in additional to my fancy new arterioflow pump. One of the many fabulous things about Mayo is that the pharmacy will let you fill just a few days and then come back if you decide you want more...a perfect situation for someone who finds fabulously colorful side effects to most drugs. The dear pharmacy techs at Mayo are extremely professional and dedicated and they follow protocol to a T.
Exhibit A:

Tech: "OK, Mrs. Buschenfeldt, is this a new prescription?"

Me: "Yes."

Tech: "Now let's see, this is for...oh...um...Viagra."

Me: "Yeaaa, it's to dilate my blood vessels. Can you tell me about the side effects? I'm pretty sensitive."

Tech: "Ok well, um, it's very important that you read this. [points emphatically to paperwork]. This medicine is usually taken about an hour before sexual activity. If you miss a dose of this medicine and you still intend to engage in sexual activity, take it as soon as you remember. Serious side effects are rare, but seek medical attention right away for a serious allergic reaction, drop in blood pressure or...um...a painful or prolonged erection. [awkward pause] Any questions?"

Me: "Um no, I think that about covers it. Have a great weekend."

Thursday, January 26, 2012

Adding a little color

Today I did an Ultraviolet Light Test to measure my skin's sensitivity to sunlight. Typically after spending time in the sun, my body looks at my skin as a canvas and decides to decorate. No matter how meticulously I apply and reapply SPF 80 sunscreen, I end up looking tie-dye (and like a sunscreen idiot)by the end of the day. As the president of Pale America, my skin responds to everything and the dermatologist thought we should investigate a little bit further. When I go to the allergy/immunology department next week, we need to know what is a skin reaction and what is an allergy...or if it is both. Don't doubt me people. Apparently my crazy vasomotor instability (the inability for my veins to pump at a steady rate...or frankly, a rate at all) with my blood, also affects my skin and I only show one extreme or the other. I mean, I've always been an "all or nothing" kid, so it's only logical that my skin should follow suit, right?


Currently my legs look like this:

















 
 My left leg was exposed to ultraviolet B rays for certain amounts of time (hence the squares) and then the reaction is followed for 24 hours. My right leg was exposed to ultraviolet A rays and is followed a little bit longer. Want to guess which one penetrates further into your skin? For all of you fancypants out there, this test is called minimal erythema dose (MED), which basically means they expose your skin to the lowest amount of ultraviolet light possible to see how it reacts. It was really rough to endure. I had to lie on a comfy bed with a heat lamp over my skin. I had to lie there for an hour. Tough stuff.


Bets on whether or not I'm going to end up with checkerboard tan lines on my thighs? Good thing it's the winter...in Rochester...where I don't go outside for days.


In other news, I had another meeting with my internist and we are definitely making progress. There are still lots of future and treatment questions, but we are checking things of the virtual list. I'm a teacher after all, you know how much I love a good color-coded list.

Wednesday, January 25, 2012

Charlie Brown said it best...oh good grief!

Well friends, I should have seen it coming. This whole time I hadn't said a thing about a departure date and as soon as I did...I jinxed it! This morning I got a phone call from GI asking me to stop by for a new schedule. Now mind you, I shook hands with my GI doc last Thursday after a great appointment, there were smiles, "nice to meet you"s, "best of luck", yadda yadda yadda. So a new schedule only meant one thing...more tests. Sure enough, my GI had done some more thinking, spoke with some motility specialists and wants to investigate my small intestine further. My first question, of course, was whether or not I still don't have gastroparesis...which I'm sure my GI could have answered if he wasn't soaking up some rays at a conference in Hawaii.

For the record, he is my third doctor to "go to a conference in Hawaii" in the last two weeks. I'm thinking that is code for "Mayo Clinic party in the sun!" Seeing as I pretty much work here, I think I should have been invited! Harsh. Although I do appreciate that he is lying in the sand, enjoying a tropical drink...and thinking about my small intestine. What could be better?

Anyway, I'm glad my doctor wants to be extra thorough, I just wish it didn't mean that I'd have to stay longer. In case I wasn't accessorized, radioactive and extra-special enough, I'm going to be swallowing a robot for this test. It's a brand new procedure created by the Mayo Clinic themselves. Yes, a robot. Just call me Bionic Girl.

Speaking of accessories, I was headline news in the bling department this afternoon. My doctors ordered a stress test with oxygen consumption which turned out to be code for bionic runt elephant on a treadmill. First they strapped 8 electrodes to my body, all with wires attached. Next I wore a belt around my hips with additional wires. They strapped a pulse monitor headband to my forehead and as the icing on the cake, strapped an oxygen mask over my face, with a giant elephant trunk tube sticking out front and connecting to a machine. I looked HOT. In fact, I'm a little bummed out that I missed the opportunity to wear this outfit to prom. I'm sure many of you won't be surprised to know that secretly I was excited about this test because I thought I'd get to run (something that has been on the "don't you dare!" list since I lost 30 pounds). Alas, alack, it was incredibly hard to breathe as an elephant and because my BP was 80/55, they only let me walk really fast on a really tall incline. I tried to tell them that if I'm going to walk up a really tall incline, it had better be on the side of a mountain but they didn't start packing their equipment to head to the Shenandoah Valley. They are really missing out.

On the plus side, the frozen yogurt stand has non-fat cherry now and I've been here so long that my hotel rate went down for the 3rd time. Simple pleasures, right?

Tuesday, January 24, 2012

Adding to my bling

Today started out with a visit to the Vascular Center. I was the youngest person in the waiting room by at least 30 years...try to contain your jealousy. I met with a cardiovascular doctor, who just happens to be the head of the department (they forgot my red carpet, but I'll let it slide just this once). The doctor took copious notes on my symptoms, did a brief examination and then sent me out for some vascular testing. The vascular techs took the blood pressure and temperature of each of my digits with a very miniature blood pressure cuff, waved an ultrasound up and down my arms to check for blood flow, stuck my hands in a heat box and then walked out of the room.  I was given strict instructions to stay put and warm up. That I can do!

So I hung out with my hands in a heat box for ten minutes, at which point the techs came back and decided that the normal amount of wait time wasn't sufficient, so I roasted for another ten minutes. Afterwards, the techs took my blood pressure and temperatures again and compared the pressures and temperatures to my "normal" body temperature. Here's a shocker, my blood doesn't flow very well!

I met with the doctor again after the tests and he has several theories. I clearly have insufficient blood flow to the extremities, exacerbated by the already present Raynaud's disease. Why? All goes back to our good friend, the mystery virus. A year and a half ago, my little darlings at school shared their Parvo Virus (Fifths Disease) with me and I was pretty darn sick (bless their hearts, they share so well). Kids just get very red cheeks, but adults get thrown to the curb. Disclaimer: 98% of adults are immune to fifths, so don't panic, unless you are also a hot mess...and work with kids...and are extra special...and likely are named Lydia. Apparently Parvo can stay in your body for a long time, and there are several studies in the works at Mayo about how Parvo can affect the vascular system.

Another theory? Bees. I'm terribly allergic to bees, wasps and hornets and have been getting bee venom therapy shots for about 5 years. Venom therapy gradually introduces your body to the allergens over time, in hopes of raising your immunity. There is a good chance that these miniature allergy attacks every few weeks have built up tissue and screwed with my blood flow even more. What a buzzzzzzkill.

So. What to do? I've already tried all of the medicine options, except for my shocker of a friend Cialis/Viagra, and based on my history...I'll probably find some rare side effect to pull out of those. Plus the likelihood of my insurance willingly paying for Cialis for a 28 year old female, are pretty slim. The doctor looked at my notes, noted my current accessories and decided that I just simply do not have enough bling! I am a celebrity after all, and I need to look my best and most accessorized at all times. Introducing, the Arterial Flow Pump. Thank goodness these doctors are great stylists.

The doctor described the pump as two blood pressure-like cuffs that you wear on your arms and squeezes the blood down into your hands every couple of minutes. People usually use this for increasing blood flow to a wound, but it is sometimes used for vaso-spastic blood flow (arteries/veins that spasm). So I'm thinking, ok, two cuffs and a little tiny machine that I stick in my pocket.

Introducing, my new bling:












And yes, my friends, that doesn't even show the cuffs. I guess this is the medical bling equivalent to the chunky necklace? My husband is such a lucky man.

A few hours later, I showed up for my pump training:
"Oh hi! Is Mrs. Buschenfeldt in the bathroom?"
"Oh, actually I'm Mrs. Buschenfeldt."
"OH MY GOSH! No way! You are my youngest patient EVER!!!!"
Score.

In other very exciting news, I have a tentative departure date! As of today it looks like I will fly home on February 4th or 5th! Keep those fingers crossed...and I'll lend you my arterial flow pump if you happen to cut off your circulation in the process.

Monday, January 23, 2012

Week #3 at Mayo

Today I had surgery to get a new feeding tube and repair the stoma (hole) for the tube. I'm kind of a celebrity on the 8th floor of the Charlton Building, so I got to greet my followers throughout the morning. Some thoughts from my fans...

1. "Hey! Welcome back! I heard that you got a PICC line, thank goodness!"

2. "Oh hey, are you that girl that they gave too much versed (sedative) last week? I heard about you!"

3. "Lydia, you are back again! I'll make sure we put some extra blankets in the warmer." (clearly this nurse is AWESOME)

4. "So you are aware that using the heat tool on your skin is going to hurt, right? [I nod] Oh thank goodness, I didn't want to be the person to tell you."

5. "Aren't you the girl who is allergic to silver nitrate? I heard about you last week! We've never had anyone with that allergy before, this will be a new one for us!"

Of course it's a new one, I'm here to make sure no one at Mayo is ever bored. Duh.

The surgery went well, my stoma is burnt to a crisp and I now have a brand, spanking new transgastric jejunostomy tube (transgastric = goes through your stomach, jejunostomy = ends in your jejunum, second part of your small intestine). The transgastric J tube is typically the second in a series of tubes, and it was for me as well. I started with a PEG-J tube and today I got promoted! (Cue Pomp and Circumstance)

The biggest difference is that the transgastric J tube has a balloon inflated just under the skin to help anchor the tube in place. I have to come back to Mayo every 3-4 months to get a new balloon. Frankly, I think my fans just want to see me and this is an easy excuse...if they promise the blanket warmer, I might just bring oatmeal scotchies.

Friday, January 20, 2012

First page of the next chapter

After the big news of yesterday, today seemed rather mundane! This morning I completed an Endocrine Test. It was really rather taxing. The first thing I had to do was take a 30 minute nap nestled under the blankets that came right out of the blanket warmer. Tough stuff. After an easy, breezy and beautiful blood draw from my PICC line, I had to walk around for 15 minutes. The nurses like to be able to see you, so I did laps in the endocrine lab, much to the amusement of the row of octogenarians getting their lab work done. I asked if I got a sticker for each lap, but sadly, they were fresh out of gold stars (which, by the way, is a tragedy). After my "workout" they drew blood again and sent it off to the lab. The test compares the hormones in my blood while resting and while under "stress." Frankly, if a 15 minute stroll is considered stress around here, I may need to re-consider the length of my stay.

Next I met with the amazing dietician again and I am scheduled for surgery Monday morning to get a new feeding tube and stoma revision. A stoma is any kind of hole in an organism (I would know, we study the stoma on leaves in fourth grade). I know this may come as a surprise to my blog readers, but I'm allergic to silver nitrate, which is the typical treatment for an unhealed wound. My body likes to expand my medical horizons, and when I tried silver nitrate in December, I ended up earning a 2nd degree burn and a visit to a plastic surgeon. Oops. The doctor so thoughtfully shared with me that he had, "never seen a reaction like this before!" Puhlease buddy, of course you haven't, I blaze my own trail (burn pun most definitely intended).

So because they can't use silver nitrate, the doctor will have to cauterize the stoma. A very thoughtul nurse called me today to make sure I was prepared that it was going to hurt quite a bit, once the anesthesia wore off. Why yes, I would imagine taking a blow torch to my belly button may not rank very high on my favorite moments, but I do appreciate the extra warning.

In other news, my dad and I punched the twelfth hole of our Frozen Yogurt Frequent Buyer card and enjoyed a free tasty treat! The owner now greets me by name...clearly my celebrity status is spreading like wild fire. I'm expecting a red carpet to be rolled out for me next week...directly to the non-fat chocolate/vanilla swirl.

On a different note, I want to share how appreciative I am of all of the love and support that has been shown to me and my family. Your thoughts, prayers and expressions of care mean the world to us and we are incredibly grateful for the gift of your friendship and love.

Thursday, January 19, 2012

A great big PICC me up!

Blog friends, today was a BIG day. I got to the clinic at 8:00 AM and just walked in my hotel room at 8:00 PM. During the past twelve hours, the following things have occurred:

1. I drank a disgusting amount of barium so the radiologist could take an up close and personal look at my stomach and small intestine. The nurse told me it wouldn't taste that bad...bless her heart.

2. I met with my internist again to access our progress thus far and discuss our plans for the next week...she even mentioned *gasp* coming home!

3. I had a meeting with the absolute best dietician I have ever seen. We are going to try a bunch of new formulas and see if my feeding tube and I can learn to get along a little better.

4. My doctors decided that I simply did not have enough bling. So I am currently sporting a 24 hour blood pressure monitor, that causes me to stand completely still every ten minutes. I got some interesting looks while trying to walk to my appointments today. I also got a PICC line, so I can stop getting in needle wrestling matches with every nurse who tries to take my blood. Mid-procedure, my veins clamped down...shocker. Guess we can see why this is necessary.

DRUMROLL PLEASE

5. I met with the GI doc again who told me...my gastroparesis is gone!

So, before you go searching the internet for details, allow me to explain. I had (haha! past tense!) idiopathic gastroparesis, which means an unexplained paralysis of the stomach. As it appears, somewhere in the past two years, I got a virus...most likely from my little darlings at school, but who knows. Chances are, I didn't even know I had this virus (I'm a teacher people, I don't have time to notice things like the fact that I don't feel well). This virus, in a nutshell, caused holy havoc in my body. Among other things, it caused gastroparesis. The "beauty" of having idiopathic gastroparesis is that sometimes it goes away.

My diagnosis now is visceral hypersensitivy syndrome. Basically after your body goes through enough trama, your brain decides that it has had enough, refuses to allow anything in and pretty much shuts down your system. Can't say that I blame my brain, but now I have the daunting task of retraining it. As my doctor said, "I don't envy you. This is one of the hardest tasks in medicine, because you can't just cut something out or take a magic pill." The next year will not be an easy one, my friends, but mark my words that I will get through it. I will meet with Behavioral Medicine in the next couple of weeks to create a plan for reteaching my brain. As far as my noggin is concerned, there is still a lot of chaos in my body. I need to show it otherwise. No big deal.

I'm standing at the bottom of a giant mountain, but let's be honest, I love hiking and the best view is from the top.

Wednesday, January 18, 2012

Trial and Error

Today's theme: If at first you don't succeed, try, try again...and again...and maybe just for kicks, do it one more time.

Today I was scheduled for a gastroduodenal motility test (gastro = stomach, duodenum = upper small intestine). A GDM involves doing an endoscopy to stick a tube from your mouth, all the way into your upper small intestine. The tube has cameras on it (sheesh, the paparazzi are everywere!), as well as sensors that detect movement in the muscles. This test was crucial for me, as it would determine if my gastrointestinal "exceptionalities" are mechanical (i.e. fixable) or related to motility (i.e. we haven't a clue). Based on my plethora of bizarre symptoms, this test was really important for designing a plan for improving my health and getting me the heck out of "it's a high of 2 degrees today" Minnesota.

But...my body said no. C'est la vie.

If I'm being honest, I should have seen it coming. As I've mentioned in a previous post, my blood and I are really attached to each other. We have serious separation issues. Unlike preschool playdates where you can wait until they are playing happily and then sneak out the back door, blood NEVER starts playing happily and it notices everything. So when the nurse came to start my IV this morning, I really should have jumped ship and gone sprinting down the hall. Instead, like an idiot, I stuck around to model the finest in hospital gown robes and to terrify everyone in line behind me to get an IV.

No exaggeration, my IV nurse was a giant, terrifying Russian woman. While loudly snapping on her plastic blue gloves and not offering even the slightest hint of a smile, I was told, "I am Janska. I am here to enter your needle." Ohgoodgrief. This was followed by a glance at my arm and, "Sigh. You have not made my job easy. Please lie still." Gee, my apologies. Next time, I'll be sure to order a set of larger veins before I come in for a procedure. I'm sure you can see where this is going...I politely offered my best suggestion on where to get the IV and I was less-than-politely ignored. Three needles, a crazed 28 year old woman who will remain nameless and a box of gauze later, I had an IV. Ya know, secretly I always wanted an arm that looked like a pirate map. And yes, I already checked...there is no buried treasure. Before my new friend Janska left, she offered a sigh and, "well, looks like I am not off to a good start." Um...sorry?

Next I was wheeled into the procedure room where I met the team of 6 who would work with me today. The test was supposed to last for 7 hours, so we were going to know each other quite well. They started my sedation IV and the next thing I knew, I was back in recovery.

The following things are true:
1. It was only supposed to be a light sedation...i.e. I wasn't supposed to fall asleep. Oops. Guess I should have mentioned that I'm a very cheap date.
2. The clock read 10:45 when I woke up. I know I teach elementary school math and all...but even I know that isn't 7 hours.
3.There were not 1, not 2, but three nurses staring at me with a sympathetic look on their faces when I woke up. Gulp.

So apparently the GDM tube got stuck on my feeding tube and they couldn't complete the test. Beforehand, they had been worried that they might dislodge the feeding tube, but hadn't at all expected a completely blocked I-95. I also apparently busted out some of my rock-star kickboxing moves during the procedure and tried to complete the tube extraction myself. Whatever people, I've watched a lot of Grey's Anatomy and Private Practice and I know what I'm doing. What happens in the procedure room stays in the procedure room...right?

SO. Now my little (well, maybe not so little) team of doctors is trying to noodle a new way to complete this test where they don't a) play bumper cars with my feeding tube, b) completely knock me out and c) allow me to give a lesson on jabs, upper cuts and kicks.

On the plus side, I got a really great nap.

Tuesday, January 17, 2012

Embrace the Chaos

Embrace the Chaos. I saw a card today in a gift shop that said this on the front. Granted, it was a birthday card, but it so appropriately captured my feelings right now that I had to buy it and proudly display it in my room. Turns out, I'm really rather fantastic at figuring out what's NOT wrong with me...like maybe even at a professional status. New business card: 4th grade teacher and professional anti-diagnostician.

Today started with an appointment with neurology. My appointment started at 8:15 and I left around 12:15 and to be honest, the biggest thing I remember is that my brain hurt (no neurology pun intended...OK maybe a little bit intended.) In any event, a team of doctors thoroughly went through my case. They asked questions, poked, prodded, asked more questions and then left for awhile to talk it over. When the team came back, it was a little bit like being on the stand in the courtroom. (Disclaimer: I've never actually been on the stand...or in a courtroom for that matter. However, my husband and I are expert viewers of Law and Order, which is clearly a representation of real life. So I know what I'm talking about.) They fired questions, I stammered awkwardly, they fired more questions...you get the idea. The verdict? I don't have autonomic disfunction and I don't have POTS. Well...at least not all the time. Sometimes I have POTS, but sometimes my body doesn't feel like it. So I have occasional POTS...ya know, maybe on Mondays, Tuesdays and every other Friday.

Totally straight forward, right?

SO. The good news? I don't have permanent autonomic disfunction and POTS. WOOHOO!!

The weird news? I don't have permanent autonomic disfunction and POTS...but I present with classic symptoms of POTS and they don't know why. Gold star body.

At this point, I also feel the need to publicly apologize to my autonomic nervous system. I've been giving it a bad rep and I feel like I need to clarify. Your autonomic nervous system responds to directions from your brain, in order to run several systems in our body. Turns out that my timing isn't only off in my tennis game (however, my camp friends can all agree that it is REALLY off in that game). My brain tells my autonomic nervous system to do the right thing, but just at the wrong time. Timing, therefore, is the issue and not the cause. Phew, glad I got that off of my chest.

In other news, I also met with endocrinology today and I'm pretty sure that the doctor and I have reached BFF status. I met with endocrinology because of my history of Graves Disease (hyperactive thyroid) and to see if any of this chaos is possibly caused by additional imbalances somewhere in my hot mess of a body. My doctor was fabulously friendly and he told me all about his family, where they live, what they do, their favorite holiday foods...ya know, the usual. I'd like to add at this point, that the man was casually chatting with me like an old pal from med school, all while I lay completely topless and dangling my 6 feet over the edge of the 5'9" examination table. Ya know, perfect time to tell me about his son's travels to Indonesia.

So where does that leave me? Embracing the chaos. Going for more tests and stumping more people and seeing if I get a discount for visiting literally every floor of the Mayo Building.

Monday, January 16, 2012

Week #2 at Mayo

Week #2 at Mayo began with a gastric emptying scan. This was scan #3 for me, so I'm a bit of a pro. The appointment started with a "mouth-watering" breakfast of radioactive eggs and a piece of toast. Every time I have this scan, I spend approximately 30 seconds being excited that I get to eat real eggs and wheat toast...two foods not normally on the menu. The enthusiasm lasts typically until I take the first bite, at which point I am reminded that radioactive eggs, no matter how much they look like regular scrambled eggs, taste like...well...rubber? The only new and different part of today's GES was the following conversation:

Radiologist: "Mrs. Buschenfeldt, have you ever had abdominal surgery?"
Me: "Yes, I have a PEG-J feeding tube."
Radiologist: "Hmmm, well is it clamped?"
Me: "Yes, but it leaks and I'm having a procedure next week to fix it. Is that going to be a problem? Am I going to leak radioactive fluid?"
Radiologist: "I'm not sure, let me go ask my supervisor."
5 awkward minutes later...
Radiologist: "Well, it is what it is. Let's get started."

Umm...okay?

So I ate my delicious breakfast and then stood in a scanner for two minutes, every hour (for 5 hours), to see how slowly the meal moved through me. Life changing, let me tell ya. The verdict is still out on whether or not I can give free xrays.

Next I went to the department of physical therapy to meet with a hyper mobility specialist. The doctor spoke with me for awhile, asked about my exercise habits (before and after hard drive crash) and analyzed my flexibility and strength. I know this may come as a shock to my blog readers, but the doctor made a life changing discovery.

"Mrs. Buschenfeldt, I must admit, your symptoms are a little weird."
Dude, if I had a dollar for every time I heard that...

So turns out it's a bit bizarre to be both hyper mobile and...well...the complete and polar opposite. I can fold my 6 feet in half and put my palms on the floor, but as anyone who has ever taken a work-out class with me can attest, I am hardly a gigantic version of Mary Lou Retton. One time a substitute teacher for my boot camp class told me that my squat looks more like I'm learning to dive. Whatever, I'm multi-tasking!

In other news, my surgery has been moved to the 26th and my tentative departure date is the 28th (although it changes almost daily.) The doctors decided they didn't want to cut any part of me until they knew a bit more about the manifestation of my hard drive crash. Don't worry, the longer I'm here, the more time I have to practice my red carpet wave.

Friday, January 13, 2012

Oompa Loompa Doompadee Doo

Today, I completed a Thermo-regulatory Sweat Test for the department of neurophysiology. This is another test to dive deeper into the wonders of my autonomic nervous system. Sweating, like breathing and blinking, happens automatically (although we've all experienced the embarrassment of pits stains and wish it wasn't quite so automatic from time to time...).This test also measured how my body temperature responds to changes in climate.

Now I've become quite accustomed to having tests and procedures done in a hospital. We all know the drill-give your birth date, reveal far more of your body than you expected, hang out in a petri dish for awhile and then go along your merry way. So even though this test was new to me, I hadn't really given it much thought. Turns out, this was an experience unlike ANY other.

I started off by donning a "fabric bikini."  (A)-aren't all bikinis made of fabric? and (B) let me assure you there was absolutely no element of my outfit that resembled something I may have worn on the beach. Next, my very kind and fastidious nurse decided that she didn't want my feeding tube to come in contact with the test. How thoughtful of her I thought...that is until she "protected it" by coiling it up, rolling it up with flesh colored wrapping and having it stick straight out from my body. And no, I have not started the Cialis yet.

After securing my hair in a shower cap and placing space age goggle over my eyes, the nurse pulled over this HUGE air vent to right above my bed and proceeded to cover me, head to toe, in bright orange powder. I don't mean a gentle dusting. I mean that I instantly transformed into a 6 foot tall oompa loompa.

She wrapped a few temperature monitors around my body, stuck a thermometer in my mouth and rolled me into a tanning bed. OK, it wasn't really a tanning bed, but that's what it looked like, and as the president of Pale America, I was willing to get tan for the sake of my health. No such luck. The next thing I know, classical music came drifting through the speakers and the little chamber warmed up to over 100 degrees. Considering that it is about -5 today and considering my average body temperature, I dozed happily for the first 15 minutes or so. Then it got hot...really hot. I'd also like to add at this point that my oompa loompa powder turns bright purple when it comes in contact with sweat. So there I was-a giant oompa loompa, wearing a "fabric bikini" with an unfortunately wrapped feeding tube, sweating my brains off and transforming into Violet Beauregarde after her terrible misfortune with the gum. Willy Wonka would have loved it. It is at this point that I looked up and noticed little cameras EVERYWHERE. I mean, I know the point was to watch how I sweat, but must we document this fashion atrocity from every angle?? Heaven help me if People magazine gets a hold of this.

After about an hour in the chamber of heat, I was released to the showers. I got most of the powder off and now only look faintly tie-dye. Fingers crossed the paparazzi doesn't secretly work at Mayo...

Thursday, January 12, 2012

Oh the nerve!

Ya know that old phrase, "you are getting on my last nerve!"? Have you ever wondered what happens when you get past that very last nerve? Well, generally doctors stare at you with an expression that contains a bizarre juxtaposition of sympathy and absolute fascination. In fact, when I was in the hospital in November, a bright-eyed and perky medical student, who was clearly working off the effects of entirely too much caffeine, asked me if she could confess something.

Disclaimer...if someone (especially a blossoming medical professional) asks you if she can confess something, it's generally not going to be that you won a million dollars. Or even five dollars.

In this case, my dear perky friend stated, "I'm sure it is hard to live with all of these symptoms, but you are aboslutely fascinating!" Awesome.

All kidding aside, my nerves have really made a hot mess of a situation. I met with gastroenterology today, who basically told me what I knew and have heard before...that I have too many things going on to warrant "quick fix" surgery. Did I know this deep down in the bottom of my "fascinating" self? Yes. Did I want to hear it? Not so much. Don't get me wrong-no one wants to be sliced and diced. However, if my session of intestinal sculpting got me closer to a steaming, hot slice of pizza and a frozen margarita, then I was game. It seems that something decided to borrow my nervous system early in 2011...but didn't exactly put it back the way it should be. The nerves (especially the autonomic nerves related to our gastrointestinal field) are an area that medicine really doesn't know too much about right now (cue my entrance in the future medical journal).

So where does that leave me now? Well this afternoon it left me strapped to a bed, hooked up to electrodes and chatting about reality television with a nurse. In short, the autonomic reflex testing chamber (and yes, they call it a chamber). The autonomic nervous system is exactly what it sounds like-the things that happen automatically in your body. Without it, Iphones across the world would blow up in smoke with all of the reminders that would have to be set for our hearts to beat and lungs to breathe. As I have mentioned in a previous post, my autonomic nervous system hasn't earned any gold stars in quite some time.

The truth is, getting to celebrity status is hard. I mean, I'm entirely too tall to be a scantily clad teenager on the Disney channel, I don't have a dog the size of a football in my purse and I fall asleep by 9:30, which rules out all of the late night parties attended by photographers from People magazine. So instead, I'm here at the Mayo Clinic, stumping doctors left and right. Not necessarily ideal, but the way I figure, the longer I'm here, the more material there is for my made-for-TV movie, right?

Wednesday, January 11, 2012

Famous purple celebrities: Barney, The Purple People Eater, Telly Monster the Muppet...and me

Today started off with a trip to the lab. As many of you know, blood is not my forte. It's not that I am squeamish, but rather that my blood tends to stage a protest when asked to leave home. I try to warn any nurse who tries to stick me, but every single one is under the impression that he/she will be THE nurse to crack the code of my veins. Let me take a moment to say that the lab at Mayo is quite a spectacle. At 7:00 this morning, I was in a line of about 50 people, all eager to give up their blood in the name of a waffle and a latte waiting on the other side (or in my case, some dry rice chex. mmmmm.). The nurses come out with a plastic container holding your already labeled vials and call your name over the intercom. Most nurses came out with a container holding 2-4 vials. So I hear my name and notice that my nurse is holding not one, but two plastic containers of 12 vials. Stupendous. I give my spiel...the nurse ignores me...and acts genuinely shocked when mid-blood draw, my left arm decides to be closed for business. Thank goodness that my body is so thoughtful. I'm working on my potential celebrity image and I look MUCH more hard core with not one, but two arms wrapped in gauze.

Next I headed up to rheumatology where I met with another wonderful doctor. She carefully went through my case, listened to every detail and allowed me to ask as many questions as I wanted. The great news is that she is not at all convinced that I have Undifferentiated Connective Tissue Disease. It will all depend on my blood work and what the GI department determines to be to the root of my Michelin 5 star diet. I do have Raynauds Disease (which is often present in connective tissue diseases), hyper mobility and a family tree that is one big auto-immune fiesta...but those may just be separate Lydia-isms. That being said, in her words, I have "a heck of a case of Raynauds." Just to bring you all up to speed, Raynauds is a disease where the smaller arteries in your body (hands, feet, nose, ears, etc.) spasm and limit the blood supply to that area. It can be 95 degrees out, I'm sweating my brains out and yet my hands feel like I just did the polar bear plunge.

Several years ago, when I was teaching kindergarten, a student drew a picture of me and wanted me to hang it on my desk. I offered my deepest praise and thanked her for the lovely rendering of my sleep-deprived, still-haven't-really-mastered-the-teaching-wardrobe self, but I was still a bit perplexed. Knowing that kindergartners are the source of all things un-sugar coated and truthful, I asked the child why she had drawn me with a purple crayon. The student looked at me like I had 8 heads and said, "because you're purple." Oh. Duh.

So my rheumatologist told me that she would like to further investigate how to treat my symptoms for Raynauds. I've already tried several options (shocker, they all caused ridiculous side effects). I think it is best if I don't paraphrase, but allow my dear blog followers to join me in the exact conversation.

Doctor: "Lydia, I'm going to write you a prescription for Viagra."

Me: "I'm sorry, I must have heard you wrong?"

Doctor: "Actually, I think I'll write it for Cialis, because the delayed release drug will last longer."

[oh thank goodness. that clearly explains everything???]

Turns out that Viagra/Cialis dilates your blood vessels...which I guess I could have figured out if my brain hadn't gone completely blank, with the exception of the words: erectile dysfunction. So, my friends, as I embark on my journey to fame and celebrity status, I ask you to keep an eye out for my Cialis commercial, coming soon to a television near you. Remember, if you have feeling in your hands and feet lasting more than 4 hours, please seek medical attention.

Tuesday, January 10, 2012

Lifestyles of the...well...teacher salary and famous?

When I was little, I used to fantasize about being famous. Come on, who didn't? I thought I'd be a big actress in a musical on Broadway or maybe even the voice behind a [gasp!] Disney princess! Well, my friends, my body is just SO thoughtful and considerate, so it found other ways to fame...through a medical journal devoted entirely to yours truly and my exra-special (otherwise known as a hot mess) body!

Today I had my second appointment at Mayo, with the department of internal medicine. My appointment began at 9:30 and I left around 4:00. I know what you must be thinking-those doctors are just NEVER on time! Guess again my friends, because I was actually taken promptly at 9:30, but had a LOT to discuss with my doctor. I walked her through the past year and my current list of symptoms. Allow me to provide you with some of the highlights of our discussion:

1. "So...you are absolutely sure that you didn't have ANY of these diseases before this year?"
2. "I must admit, you have certainly tried everything I can think of!"
3. "Wow, you really do NOT do well with medicines, I didn't even know that was a side effect."
4.  "I've never met anyone who has all of these issues at once."
Drum roll please...
5. "Well we will definitely be writing a case study in our medical journal once we have put together your puzzle. Don't worry, we'll just call you a 28 year old female."

I know, I'm a pretty big deal. Feel free to start sending fan mail now.

Several times during the past year, Postural Orthostatic Tachycardia Syndrome (otherwise known as POTS) has come up in reference to my symptoms. My doctor today confirmed that I do, in fact, have POTS disease. POTS presents differently in every person and no two cases are alike. Lucky for me because I don't think the medical journal will be long enough for TWO people like me and "Haas Buschenfeldt Syndrome" is already a pretty long name. In a nutshell, POTS affects how your blood moves through your system. It involves autonomic neuropathy, which means my nerves are not properly managing the systems in my body. The nerves that are supposed to move my blood and regulate my blood pressure, equilibrium, hydration, sodium levels, etc., don't work and my body is constantly resorting to plan B (or C...or Z.)

Every other hospital has told me that it is just coincidence that all of these aspects of my body broke this year, and that they aren't connected at all. I refuse to believe this and luckily, my doctors at Mayo don't believe it either. I'm already scheduled to meet with ENT, internal medicine, rheumatology, GI and surgery. Today we added endocrinology, neurology, dermatology, vascular medicine and neurophysiology. Look for my guidebook of the Mayo Clinic to hit Amazon.com later in 2012. I'll be famous by then, so be sure to search under "celebrity works."

Sunday, January 8, 2012

Geological Excavation

My first appointment at Mayo was with the otorhinolaryngology department...otherwise known as the ENT (ear, nose and throat) department. Some of you may assume that I met with ENT to discuss my general need to live in an allergy-free bubble, but guess again! Apparently I like geology so much that I grew my very own stone in my salivary gland. As per usual, no one really knows why on earth I have a stone in my submandibular gland, but the doctors suspect it has something to do with my stellar nutritional status. My 5 mm stone is in the duct of my submandibular gland, which is under your jaw bone, to the right of my chin. The stone blocks my salivary gland, so my neck and jaw swell up any time I attempt to eat anything, and sometimes just for kicks. Mayo Clinic is one of two places in the world that has an amazing machine that endoscopically removes salivary gland stones, or sialolithiasis for all of you fancypants out there. As my doctor explained it, the machine goes into your salivary gland through your mouth (yes, it is TINY), plays a Star Wars-like game to shoot the stone with a laser, and then tries to remove the pieces.

I met with two wonderful doctors and scheduled my procedure for the 17th. Unfortunately, my stone is large and very far down in the duct, so there is only a fairly small chance that the doctors will be able to get it with the Star Wars machine. More likely, they will have to do surgery to remove my entire gland and I will end up with a lovely 2 inch scar on my neck. Don't worry, we all have several salivary glands, so apparently I won't even notice it is missing!

I also need surgery to repair my feeding tube (again, for you fancypants, that is granuloma resection and stoma revision), so the doctor is going to try and collaborate with my surgeon (who I will meet on the 13th) to see if both surgeries can be done at once. Amazing!

My journey to the Mayo Clinic

Greetings blog readers! My Dad and I arrived in Rochester, Minnesota on Thursday January 5th. In short, this place is AMAZING. The facility is unlike anything I have ever seen and the staff is friendly, organized and professional.  For those of you wondering what on earth I'm doing in Minnesota in the middle of January, let me bring you up to speed.

In 2011, my body broke. That's really the easiest way to describe it, but let me give you a few more details. Following months of tests and ridiculously bizarre diets, I was diagnosed with gastroparesis in early May. Gastroparesis means that I have a paralyzed stomach. My fine dining options include non-fat/non-fiber/non-dairy liquids, egg whites, white rice, white bread and the occasional potato. Don't worry, if you're really lucky, I might invite you over for dinner some day!

After several months of additional testing and joining a clinical trial, I was hospitalized in the fall for malnutrition (shocker). While there, the doctors decided to look into my ever-growing list of unusual symptoms. They ran numerous tests, stared at me with bizarre expressions and uttered the phrase, "well I've never heard of THAT before!" more times than I could count. Before sending me on my merry way, I was diagnosed with Undifferentiated Connective Tissue Disease. UCTD is a polite way of saying that my body hasn't quite decided what connective tissue disease it would like to claim as its own. In short, I carry several symptoms/traits of several different connective tissue diseases (lupus, scleroderma, etc.). The way I figure, my body wants to be able to make an extremely educated decision and it wants to try out lots of options before reaching a final verdict. See, I'm just outsmarting everyone, really.

While in the hospital, my doctors also decided that I did not posess enough bling and needed to accessorize. They weren't thrilled with my 30 lb. weight loss, and with Thanksgiving coming up, they really wanted me to get my own special version of Thanksgiving dinner. A few weeks later, I got surgery to have a PEG-J feeding tube inserted into my stomach and small intestine. Turns out that "failure to thrive" applies not only to babies, but also to anyone who only eats baby food. Who knew?

Just in case my husband and family was getting bored, the doctors also discovered that I have superior mesenteric artery syndrome. SMA is a super rare condition that means my aorta and superior mesenteric artery are squeezing my small intestine like pliers. Oops.

So. Add this past year to my arsenal of allergies, raynauds disease and graves disease and you will see, my friends, why I have decided that January was a great time of year to visit balmy Minnesota.