Apple: 4, Me: 1...but that's better than zero!

Well friends, I have defeated the apple. Mua ha ha ha ha.

Over the last 3 weeks, I have conquered plain pasta, wheat bread and reduced fat cheddar cheese, but the apple was proving to be quite the competitor. For the record, as a teacher who is paid to represent the amazingness of the coveted red apple on my desk, I do not appreciate getting thrown to the curb by a piece of lowly pie-making fruit. In addition to the whole GI situation, it became shockingly apparent that I haven't actually chewed anything crunchy in over a year...and let me tell you, my jaw needs some serious boot camp. Jaw calisthenics perhaps?

My exposure therapy with food is a very slow and painful process. On day one, I eat it in the most broken down form possible (all natural, pureed applesauce in this case). I eat that form day after day until I stop getting sick. Then I bump it up a notch (chunky, peeled applesauce) and eat that form day after day until I stop getting sick. Then this week I started eating teeny tiny pieces of peeled apples. Now granted, my body isn't thrilled that I have a) forced it to start eating foods that make noise, b) forced it to go under the knife and have my throat sliced open and c) forced it to keep on keeping on during this whole process. Regardless, I think we can rate the reaction to actual apples as "less than pleased." Well guess what brain, I'm persistent (trust me, I just took a personality test today...so I know these things) and today I conquered the apple. Did it have a peel on? Nope. Was it cut up as if being fed to an infant? Maybe. Was it the fifth time I had tried it? Perhaps.

However...I did it.

Break out the soy milk! Parrrrtay!

In other news, despite the fact that I've had a PICC line since early January, my body decided last week that I'm all of a sudden allergic to the sterile covering, and I now need to wear infant mittens to bed to keep from scratching my arm off. I mean, I guess my skin was bored and a new case of hives felt like some festive decorating for leap-day, right?

Well...all that ended today because...I've been de-picced! I don't want to jinx myself, but I think the removal of my picc line is further indication that my hypothetical news from last week might become actuality...but let's not get ahead of ourselves.

So, I'm thinking that I should replace the new lack of bicep bling with some actual bling...thoughts?

Pssst...I have a secret!

Friends, I have news.

I don't want to jinx myself (we've all seen my rock star skill in this department)...so I'll share this topic on a delicately hypothetical basis.

I may or may not have reserved a spot on a flying vessel that may or may not fly from the midwest to the east coast on Saturday March 3rd.

I may or may not be ridiculously excited about this hypothetical news.

Just sayin'.

Geological Excavation Complete

Well friends, I am now officially one salivary gland lighter. Yesterday afternoon, the surgeon removed my right submandibular gland and found it filled with another colossal stone (bigger than the first) and several small ones. Why my one gland was moonlighting as a rock quarry, we may never know, but regardless, it's gone now.

I spent the night in the hospital, which at Mayo, is a heck of a lot better than spending the night at any other hospital. Was I feeling rather rough? Ohhhhh Yes. But I did have my own room with on-demand movies and unlimited ginger ale and jello...gold star Mayo. The doctor had to insert a drain, so I was attached to a complicated web of tubes, in addition to my IV and blood pressure monitor, which made for some interesting attempts to get out of bed. Side note, when a doctor tells you it is painless to remove the drain, first question whether or not he's actually had one himself...because I can assure you it is a false statement. Pulling a foot long tube out of a gaping hole in my neck is now officially checked off of the bucket list.

In other news, don't take it personally if it looks like I'm scowling at you. Chances are, I'm not actually scowling...or maybe I am...you'll never know, mua ha ha. The surgeon had to move my nerve out of the way to remove the gland and it got a bit stretched out...oops. My exercise routine now consists of several sets of jaw and smiling calisthenics to try to get my nerve back in shape...totally attractive.

Being the celebrity that I am, everyone wants to see me, so the surgeon thought he'd jump in on the party and request a follow up in 6-8 weeks. Ya know, just in case I haven't seen enough of the city. Besides, having a welcome back party for someone with my fame is probably good for tourism, right?

Same song, second verse...

Well friends, tonight's homework is to think of some really fantastic pirate stories. Unfortunately the laser damaged the duct of my right submandibular gland during the surgery to remove my stone, and now I need to get the gland removed. The doctor gave it a good two weeks to open on its own and despite the fabulous gland opening thoughts from blog readers across the world...no such luck. But I do appreciate the effort!

So. Tomorrow I go under the knife around 11:30 AM...well, I report at 11:30, which I've learned means that my actual surgery won't be until 1:30 or 2:00 PM...boo. I will be in the hospital overnight because the doctor will have to insert a drain into the site. Drains are standard in the neck area, because for obvious reasons, swelling in that department isn't the best (ya know, breathing is generally healthy).

The way I figure...it's one fewer gland for me to get a stone in again...right?

Ok, friends...pirate stories. Go!

We are going to need a much bigger bubble...

On Friday I had my follow-up appointment with the allergist and I got to take the hubby on a tour of the Mayo Clinic. He was amazed by the facility-especially how it works like a well oiled machine AND has a Dairy Queen on the subway level. A blizzard a day totally keeps the doctor away.

In any event, the allergy appointment was a total shocker. The extensive allergy testing the doctor had done for common allergens ALL came back negative...what? Most of you know that I am an allergy machine. Despite the fact that most outdoor allergens are dead in the winter and I don't currently have any pets (although I'm working on a dog...not making much progress with the hubs), I have always needed allergy medicine and eye drops year round. This has baffled my allergists for years. My eyes turn red and itchy both indoors and outdoors, and every season of the year. I am a professional sneezer and you will absolutely never find me without at least two tissues in my pocket. I also get sinus infections like it's my job. Well, friends, after 28 years, I finally know the reason. I, hot mess celebrity-status Mayo clinic patient extraordinaire, am allergic to air.

Yes, you read that correctly. Air. Like the kind that you breathe and is everywhere.

So it turns out that modern medicine has made extensive advances in identifying thousands of different allergens, but there are still many that have yet to be properly identified. My doctor has had a few patients who are allergic to diesel or to pollution, but the fact that my allergy appears both indoors and outdoors, and both in the city and the country, leads him to believe that I don't fit into that category. Duh. I form my own category doc, Mayo really should know this by now.

So, seeing as I'm already rather predisposed towards clumsiness and general awkwardness, placing my 6 foot self in a bubble doesn't seem like the best lifestyle move. So where does that leave me? Oh ya know, the usual. Placing a baby bottle nipple on the end of an anti-inflammatory inhaler and squirting it up my nose.

Totally. Normal.

In fact, it's so normal that the pharmacist had to call my doctor twice, just to confirm that she had, in fact, read the order correctly. She so politely shared with me, "I've never seen a prescription like this before!"

Puhlease. Of course you haven't. It's for celebs only.

I'm sweating...on the inside

Today was day four of rehab, and it was family day! My Valentine and I, who arrived late last night, spent the day together in different programs all about chronic illness and the effects on family and friends. All in all, it was a great program and we will go back for the second half tomorrow.

In other news, we've had a huge change of plans on my personal rehabilitation schedule. Originally, I was going to start a terrifying cocktail of drugs to calm down my hypersensitive nerves and then gradually reteach myself to eat. Now, the plan is the same...but minus the chemical help. Visceral hypersensitivity applies to drug/body interactions as well, and therefore all the drugs would accomplish is completely tranquilizing me and loading me up with terrible side effects. No thank you.

The good news is that I don't have to take the drugs...the bad news is that I don't get any help.

In a nutshell, re-teaching my brain is going to hurt...and there is no way around it. My body is going to continue to reject anything and everything, but I am learning some concepts to minimize how the pain/symptoms affects other parts of my body. Today I did a biofeedback session while eating a few pieces of a nutri-grain bar. My stomach was on fire, but after a few tries I was able to get the electricity in my body to slow down tremendously. I'm still going to feel sick as I learn to eat again, but I am learning to control the nerve impulses, which dampens the severity a bit. It's basically boot camp for my brain. I'm sweating my face off...but on the inside...and without any amount of spandex.

I made a plan with the dietician and I'll be re-training my brain verrrrrrry gradually. Basically, I'm a giant infant...but I'm already potty-trained and can dress myself. On Monday I'll try a few tiny pieces of a peeled apple. Then a few days later, I'll eat a few bigger pieces of a peeled apple. Then I'll eat a few pieces of peeled apple with a tiny bit of apple with skin...and so on, and so forth. It's basically exposure therapy for my insides. Unfortunately I do have to get my salivary gland removed on Tuesday (start thinking of the pirate stories my friends) so that will put a bit of a bump in the plans, but cest la vie.

So there you have it. Operation "Mark my words, I WILL eat again" is underway. Let's rock and roll!

Itty Bitty Teeny Tiny Dance Moves

Happy Valentine's Day blog friends! I am super excited for the arrival of my valentine tomorrow and I think I'll wear a "Hello, my name is Lydia" badge, just in case he has forgotten what I look like after six weeks. Can't be too prepared, right?

Anyway, today was day two of my rehabilitation program and it has been a bit of a rough start. As you may remember, a program for me does not exist...so Mayo recommended me to this program, with the intention of modifying the curriculum to meet my needs. So it has been two days (four including orientation) and I have yet to see said modification. I haven't started any of the scary drugs to slow down my nerves and I haven't started any sort of "Let's teach Lydia to eat" plan. I have, however, discovered that the cafeteria serves vanilla frozen yogurt at lunch. Simple pleasures people.

My nurse case manager absolutely promises me that tomorrow I will meet with the doctor AND the dietitian to create a plan...fingers crossed! But in the meantime, I've gone to several informational sessions on the power of addiction and the pharmacology of opiate pain medication...all extraordinarily helpful information for the hot mess in the back row who can't even take Advil. Today I took session 1 (of 6) on Cognitive Behavioral Therapy and ended up partly teaching the session after the instructor realized I was an elementary school teacher. I now have people coming up to me and asking for help with their kids...maybe I should pull a Lucy and start charging 10 cents for advice.

I also earned a serious gold star in physical therapy today when the therapist asked me if I could handle 5 minutes of aerobic activity and I did 30...and only stopped because I was late to my next class. Come on now people, pain or no pain, I don't generally sit still...just ask my husband.

All sarcasm aside, I haven't lost hope and refuse to be sent away without a fight (which I do very productively, I took anger management today after all). I'll meet with the doctor and dietitian tomorrow and hopefully be on my merry way towards a big, steaming pizza (with fresh mozzarella, basil and tomato please...although at this point, I'm not too picky). The muscles around my veins are working super hard at physical therapy and I'm determined to get my blood to flow at least semi-regularly by the time I leave. I've been practicing what I learned at biofeedback last week and I'm eager to try it again on Thursday. I am also learning lots of helpful modifications in occupational therapy to avoid back pain, including the purchase of a "grabber" to pick pencils up off the floor at school...try to contain your jealousy. And yes I'm 28, not 82.

So. I'm not really moving forward, but I'm absolutely determined not to move backwards either. So I'll call it itty bitty teeny tiny dance moves in place. More like a cha-cha, perhaps?

One Year Later

It dawned on me this week that one year ago today, I had my first doctor's appointment for my crashed hard drive. In some respects, it's hard to believe it has been a year and in other ways, 365 days doesn't seem nearly long enough. In reflection, it's easy to focus on the statistics. For example, the simple fact that I, a person who experiences an increase in heart rate as I walk into Whole Foods, haven't had a non-pureed fruit or vegetable in an entire year. With the exception of my daily ration of yogurt, I haven't had dairy and I think a year without meat probably now categorizes me as an official vegetarian. I now classify gummy bears as a food group and can actually differentiate between brands of white bread and white rice. 

But all that aside, I feel incredibly grateful.


I know that may sound strange. Why on earth would I say that I'm grateful that a virus attacked my body and caused unimaginable havoc? Maybe it's because I'm an optimist to a fault. Maybe it's because life just seems more pleasant when you find the sunny side....or maybe it's because the virus also directly attacked my brain and I am, in fact, absolutely insane. Quite possible.


Regardless, I'm grateful.


I have always been a person who lived life going 300 miles per hour. I was the kid in college who got special permission to take an overload of credits for 5 semesters and as a teacher, in June I can often tell you what my plans are for every single day of the summer. Carpe Diem, right?


All that changes when your hard drive crashes. I'm not meaning to imply a tone of self-pity. In fact, what I'm implying is that getting "benched" by my hard drive gave me no choice but to slow down and take stock, and for that, I am grateful.


Sidelined in the athletic department, I decided to find something else to do. When someone asked me what I liked to do for fun, I didn't want to pretend that spending hours researching gastroparesis and vasomotility was actually both a) a hobby and b) fun. Talk about a conversation stopper. I looked around at many art and music options and ended up joining a local choir. Now, after a few months with the Vienna Choral Society, it brings true shame to my cheeks to realize that I had let such a joy in my life slip for several years.


In college, I wrestled greatly with the choice of pursuing my passion for art, for education and for health and biology. In the end, art and education won...but who would have expected that I'd end up basically half way through med school without actually ever receiving a degree in biology? I mean, I've been to 17 of the 21 floors in the Gonda and Mayo buildings and I now own a Mayo Clinic fleece...you might as well start calling me Dr. B (wonder if this means I'll get a salary increase in the county...).


For the past year, I have been absolutely overwhelmed with the generosity and thoughtfulness of my family and friends. You know that feeling you get when someone does something for you that is so incredibly thoughtful, that you feel like you got smacked in the chest and can't form words? That's the feeling that, thus far, I am unable to articulate, but has been my lifeline through a difficult year. There's nothing quite like a hard drive crash to restore your faith in the human spirit and remind you just how lucky you are to have your friends and family.


I've reconnected with people I haven't spoken to since elementary school. I've developed deeper relationships with friends and former acquaintances and I've met some absolutely incredible people, who I know will now be a part of my life permanently. I have in-laws who are willing to drop everything to take me to an appointment or a surgery. I have a family who has worked every connection imaginable to support me and help me get well. I have a mother who calls me every day, lets me vent when I need to and knows just when to send me a pick-me-up card. I have a father who is willing to spend 5 weeks with his 28 year old daughter in "freeze your tuckus off" Minnesota...and we are still speaking, laughing and joking around. Above all, I have a husband who rolls with the punches and loves me no matter what, even with my extensive amount of bling and baggage.


This is not to say that the past year has been a picnic, because it hasn't (I mean, just look at my skin...I clearly haven't spent too much time outside). I've had more moments of fear, frustration and tears than I'd like to admit. But this is to say, that in reflection, I can't imagine not going through the past year, because of the gifts it has given me.


A year later, I'm still standing at the bottom of a huge mountain, but the mountain has a name and I've been handed a compass. I am grateful for what this year has given me, and although it feels painfully inadequate...thank you.

The first day of middle school...take two

Today was a lot like the first day of middle school. Ya know, I had to memorize my locker combination, didn't know where to put my lunch and had to wear a "Hello, my name is Lydia" name tag. Awwwwkward. It didn't take me long to realize that I was the token "new girl." The PRC likes to move people in and out of the program fluidly so there is never an entirely new group and today, as it turned out, I was the only newbie. I mean, I guess no one else wanted to compete with my fame...can't say that I blame them. Today and tomorrow are mostly evaluative, but I'll meet some people on Monday so I can sign autographs and such, the usual..

So the evaluations. Holy. Cannoli. I spent at least an hour each with physical therapy, pharmacy, biofeedback and occupational therapy. I also spent two hours with my nurse case manager as she went over my medical history, learned the in's and out's of my health and asked about my realistic goals for the program (ya know, just in case inhaling a steaming hot pizza by tomorrow isn't feasible).

I had never done any biofeedback before and my inner nerd was pretty curious. First the technician hooked two monitors to my back and then wrapped a band around my waist. For six and a half minutes I was instructed to sit quietly and watch the computer slide show of "soothing images." Afterwards, the technician showed me how my breathing correlated with the electrical impulses flowing through my body. My artsy self was fascinated by an actual visual of visceral hypersensitivity. I thought I was relaxed, my breathing thought I was relaxed, but my brain was having a heck of a fiesta and the electricity was flyyyyying. It's always a good sign when the technician responds, "Oh...my!" Right?

So now all of my team members will get together and form the "Operation Lydia would like to EAT" plan. I'll meet with the team briefly tomorrow morning and then start officially on Monday.

Bring. It. On.

Today's Homework

OK friends, I'm giving you a job.

It has been almost a week since the surgery on my submandibular gland. I was fortunate in that the doctor was able to get the stone out by blasting it with a laser and removing it endoscopically. Yesterday I got a CT scan of my sinuses, which also showed my glands.

The good news? The stone is completely gone, and there are no remaining fragments.

The bad news? The laser caused fairly extensive stenosis (abnormal narrowing) of the duct and now the gland can't function as it should. If it can't function, I have to get it removed.

SO. I have to give it another week to see if I can get rid of the "one-sided chipmunk" look. I've been instructed to "massage" (I use this word loosely...no part of the experience is something you'd wish for on Valentine's Day) the gland like you wouldn't believe and hope the duct decides to re-open itself.

Your assignment? Think open thoughts. Lots and lots of open thoughts about my saliva flowing freely (doesn't that just make you feel warm and fuzzy inside?).

And if you aren't inclined towards open thoughts, at least start thinking of some good stories I can tell people to explain the 4 inch scar on my neck. Preferably involving pirates.

Cue Pomp and Circumstance

Well friends, today marked the official final day of stage 1 of rebooting my hard drive. Bring out the cap and gown! Swing over the tassel! My dad is so excited that he already started packing his bags...for his departure on Friday.

I started the day with my very last two diagnostic tests- a CT scan of my sinuses and some more allergy testing. I don't have my follow-up appointment with the allergist until February 17th, so I won't get the official results until then. However, my internist is fabulous and she gave me a sneak peak that my sinuses have not, in fact, migrated. Whew. I have oodles of scar tissue up there, but don't need a GPS to track everything down. The allergy testing today was done via my fabulous PICC line, as blood allergy testing can be a little bit more specific than the skin testing. I won't get those results until next week as well. On a very exciting note, I got to take an antihistamine today for the first time in 3 weeks...who knew being able to breathe felt so good?

This afternoon I met with my internist again and before I left, I scheduled a follow-up visit! Ya know, the kind of visit that involves going home, living life as a celebrity and THEN coming back to report in. She is totally going to miss seeing me every single week, wearing the exact same thing every time. In fact, maybe my first celebrity photo in People magazine should be taken in my "I only packed for one week" uniform.

I thought I was on short term disability, but turns out I'm attracted to teaching like a moth to a flame. Today I was told, "ya know, I've really learned a lot from your case!" So more importantly, does this mean I can get an honorary medical degree now?

At this point, all of my care is shifted over to the rehabilitation center and I will begin treatment there on Thursday. My doctor will be consulted on all decisions, but I won't actually see her. She wrote the prescriptions for the first "cocktail" of drugs that I will need to try in order to sedate my hypersensitive nerves. Luckily I have a blissful 48 hours before I need to start them....fingers crossed I don't grow a third eye or sprout green hair. I finally received the report from my minimal erythema dose sunlight testing and I am, in fact, hypersensitive to ultraviolet A light. Whether this hypersensitivity will fade as the rest of my body heals, is uncertain. Until then, look for the babe in zinc oxide with a frontal tail sticking out of her swimsuit. Hot dang, my husband is a lucky man.

So there you have it, my friends. The end of chapter 1. Out of 21 floors in the Gonda and Mayo buildings, I have yet to go to 4...if only there was some sort of punch card to get a free appointment...

It's official: My intestines are smart

Well friends, my intestines are officially smart. The results from my SmartPill came back and my intestines function as they should...woohoo! I have a lot of scar tissue from the past year of chaos, which unfortunately isn't going anywhere, but hopefully it won't cause too many problems once I get back into the land of food that crunches. So the first person ever to complete the SmartPill test passed with flying colors...that makes me a genius, right?

In other news, I'm allergic to my feeding tube. Yes, that is correct. The granulation tissue that was cauterized during my surgery is all back and surrounded by hives and blisters. Not ideal, but it just gives me even more motivation to get this show on the road to recovery and get rid of this lovely accessory. Don't tell my tube, but I'd be OK with switching to, ya know, a large necklace instead of a bedazzled enteral feeding accessory.

I also met with the Department of Allergy and Immunology today. My doctor went through my skin testing from last week and wants to do a few more tests tomorrow. The doctor isn't sure that all of my sinuses are a) working properly and b) in the correct spot in the first place. I'm an artist people...maybe my body decided that aesthetically, my sinuses really belonged somewhere else...what can I say?

Interestingly enough, turns out that strawberries belong to a group of foods that naturally carry a high level of histamines. Some people are exceptionally sensitive to these naturally occurring histamines (I suggested that this tiny group of people be renamed "The Lydias"...I'm still waiting for feedback). So if I eat a strawberry (or drink champagne or red wine), my throat isn't going to close...I just might break out in one heck of an explosion of hives. So maybe at rehab I can start a "gradual strawberry infusion" program...totally normal, right?

This Friday, I will finally move out of the dear Residence Inn and will be moving in with an absolutely wonderful family who has no idea of the hot mess they have invited in...bless their hearts. Perhaps some oatmeal scotchies will help soften the blow of my extensive collection of allergies and accessories. On another exceptionally exciting note, compliments of Nana, my hubby booked a flight to Rochester for next week :)

Behold the Bedazzlement

Up all night sick from anesthesia and antibiotics? Clearly there is only one remedy and that is a little more bedazzlement...





Disclaimer: A 2:30 AM photo shoot of something attached to my stomach is not one of my strengths...work with me here.

Star Wars-Mayo Clinic Version

Well friends, I surprised everyone today and was able to do outpatient surgery! I'm still a little groggy from anesthesia, so I'll keep this short and to the point...Lydia-1 point, Blood Pressure-0 points. Mua ha ha ha!My fabulously wonderful doctor went into my salivary gland (under my tongue) with a teeny-tiny endoscope, played a sweet game of Star Wars, blasted my stone into oblivion and pulled out the pieces. My neck and throat are pretty sore from the surgery and breathing tube, and I've decided that it is an absolute crime that Rochester doesn't have 7-11 stores where you can get a slurpee. Tragedy. Regardless, I am back in the hotel, don't have a 4 inch gash on my neck and I'm not spending the night in the hospital. Score!

In other good news, the Mayo Clinic has gotten used to having a celebrity around and they've decided they just can't part with me, even for a short time. I got a call about an hour before my surgery that I've been accepted to the Rehabilitation Center and I'll start...next Thursday. They were super impressed with my motivation (um, hello, I haven't had food in a year...of course I'm motivated) and want me to get started right away. I am a little bit bummed because I have certainly been getting more and more excited to go home next week, see my husband (novel concept), sleep in my own bed and have more than 1 week's worth of clothing to choose from for my daily wardrobe. However, I know that the opportunity to get into this program right away is unheard of (ya know, celebs only) and it might have been more of a tease to go home and have to turn around and come right back. Now I'll begin the program February 9th, finish on March 2nd and fly home on March 3rd!

All in all, a very successful day. My hiking bags are packed and I'm ready to lace my boots and start the climb.

Prepping for Geological Excavation

Today started with phase 2 of the allergy testing. Fingers crossed, this is the very LAST diagnostic test I will have before I go home! Just like yesterday, the nurse dropped a tiny amount of the allergen on my skin and then pricked it with a needle. I'll get the official results from the allergist next week, but the nurse did tell me what caused the colossus of all hives...cockroaches. That's correct my friends, my number one animal allergy is...cockroaches. So I'm thinking that in addition to the radon testing prior to buying a house, homeowners can hire me. I'll walk into the potential home, see if I start sneezing like crazy and get paid for my troubles. Between honey bee keeping and cockroach testing, my husband and I can start planning a vacation!

I also met with my doctor to prepare for my surgery tomorrow. This surgery is to remove the stone from my submandibular gland and/or remove the entire submandibular gland itself. As you may recall from a previous post, the plan is to go into my salivary gland using a fancy-schmancy endoscope (there are only two endoscopes in the USA-Mayo and Pittsburgh). The doctor uses a laser to break up the stone and pulls the pieces back out through the opening in the gland. As a celebrity, I always spice things up a little bit. My stone is both huge and very far down in the duct, so the chances of the endoscopic procedure working are fairly slim. If this happens and they can't remove the stone, then the doctor will remove my entire gland through an incision in my neck. The endoscopic procedure is outpatient, but the gland removal will require an overnight hospital stay because they will have to place a tiny drain in the site. So the name of the game is...go with the flow.

In other news, my fabulous nurse from my allergy testing loved my idea of bedazzling my accessories so much that she bought me sequins and glue! Call out the paparazzi, the gem encrusted feeding tube is not to be missed.