Mayo Called – I have appointment!

Wow, talk about quick response!

I am scheduled at the Mayo Clinic (Minnesota) for 3-4 days of tests (possibility of treatment?) on May 17th.   Everything is scheduled to be outpatient.

I will be calling insurance company on Monday to make sure that there are no insurance barriers to be dealt with.

I am hopeful that this will be the beginning of the end of my journey.

Now, to figure out how to fund the trip…no, that can wait until Monday as well – I am going to simply bask in the happiness that I am feeling today.

Limboland – Population 1

“Limbo” is the word that I feel best describes my status.  I don’t feel like I am making any forward movement.  I am also not moving in reverse.  I am simply living in Limboland.

Since fixing the partial blockage with surgery at the end of January, I have been encouraged to eat.   Initially, I was very hesitant but I tried.  I had some limited success which was encouraging.  Unfortunately the limited success never blossomed into any real improvement.  The nausea is always present.

For the most part I find food to be unappealing.  My tastebuds have been so numbed by the bile I vomit during the day (and night) that most foods taste off.  There are only a few flavors that seem to retain their taste – salt and cheese (feta and sharp cheddar).  Unfortunately, my system doesn’t like cheese because of the lactose.  A lot of food/flavors taste rancid and you just can’t eat rancid.  I do still like the taste of tomato based pasta sauce but my system does not like it.

I’ve ruled out so many food items based on their vomitability factor.  Tomato based items are definitely unpleasant coming back up due to the acid.  Rice is on the list because there are so many “pieces” that it takes forever to clear one’s throat and mouth.  Bread and similar are on the list because they tend to come up as one lump which is very tough (think cat with a hairball).

Sadly, the few items that I found that I could tolerate in small amounts (rice cakes, popcorn – they tend to melt into nothing but have a great crunch and chew factor) caused my blood sugar to rise and then fall too quickly.  It isn’t worth the hassle.

I am finding it is harder and harder to even try to eat.  Nothing tastes right and the physical discomfort of blood sugar, vomiting, dumping syndrome, or the food just sitting and not moving through the intestine isn’t appealing to me.  I still try but my attempts are getting more and more infrequent.  Today I munched on a few sunflower seeds and called it quits.  I find myself thinking “why bother” more and more.  I don’t even pretend to eat dinner with the boys via the “chew and spit” method anymore.  Does anyone, other than me, realize how much of our social lives revolve around food/eating?

The same story with liquids.  For a while I was trying to drink different kinds of liquids during the day.  But, after vomiting each and every time, I don’t find myself all that willing to keep trying.  Raise your hand if you like to vomit?

I don’t think of it as giving up but rather choosing to postpone any further experimentation until something changes.  My hopes of everything simply falling into place have been worn down by reality.  I know it is going to take something more than wishful thinking to fix what is broke.  Sheer will power just isn’t what it used to be.  Each evening I hook up to the IV nutrition pump for 12 hours.

Meanwhile, seems there was some miscommunication regarding the Mayo Clinic.  I was under the impression that the GI would be reaching out to Mayo physicians and sending them my file.  Come to find out that he was waiting for me to contact them and when they requested my file, he would send it to them.  I can’t even imagine how he assumed I was going to be able to call them up and determine what doctor would be best suited to look at my case.  Anyone wanna guess how many random phone calls to the docs there would actually be returned?  Hahahahahahahah.  I suppose I could make a semi-educated guess and schedule an appointment.  Although I am pretty sure I would find myself being referred from one specialist to the next – similar to what I have experienced here.

Thankfully my primary care doc has stepped forward and offered to make the initial contact with the Mayo Clinic.  I am trying to remain positive but I just have this nagging worry/frustration that I am going to have to make numerous trips (spending money I do not have) and go through several individuals before I actually encounter anyone who might have a solution.  If the GI is right, it might take several people because there seem to be a few different issues going on – so it becomes even more daunting to try to find those different individuals.  I know I have no real choice but to keep plugging along – I simply can’t bring myself to even consider the possibility that the current state of health might be as good as it gets.  I still haven’t figured out how I am going to afford trips to the Mayo Clinic.  The cost of going to the Mayo Clinic might be more than I can afford – it is a sobering thought.

So, here I am in Limboland.  One day passes same as the day before.  I vomit each night like the night before.  I vomit during the day like the day before.  I get sidetracked too easily by frequent headaches and low energy.  Each day brings a new reminder about the deeper financial pit I am sliding into.  Every day is a reminder of another day I am not working or being useful.  I am struggling more with each passing day to keep positive.  I feel aimless and worry that if this continues, I might find myself with the additional burden of depression.  I find myself withdrawing more and more from friends.  Sleep is hard to find at night because I know as soon as I fall asleep I will wake up to another day of the same.  It is all too easy to get lost into sleep during the day as it helps pass time.

16 months and still no end in sight.  Limboland is a lonely, bleak place to live.  I wanna go home but home isn’t there anymore.  I can’t go back and I am not moving forward.