Living well on 3 hours a day…

3 hours…that is how long I am free from the tubes/pumps each morning and again in the afternoon.  3 hours…often spent at doctor appointments or running errands and shopping.

I want to make the  most of my three hours and the morning hours are most precious to me because I am somewhat energized after a full night tube feeding.  I’ve been trying to avoid dr visits in the morning and running errands.  I find that I am becoming very possessive of how those 3 hours are spent.  I certainly don’t want to spend them at a doctor’s office or grocery shopping for food I don’t eat.   I don’t always get out in afternoons – kids are coming home from school and I have to start gearing for dinner for them and what not.  The heat of the summer is often a factor.  Since I can’t drink fluids getting hot and thirsty is real issue.  There is no good way to quench my thirst.  Next time you are hot and sweaty and feeling parched, try getting satisfied by chewing on a piece of gum.  Just doesn’t cut it.  I was craving a refreshing glass of water the other day so I said “screw it, how bad will it be to chug and vomit?”  Turns out that prolonged esophageal spasms are bad, very bad.  The seconds of bliss were quickly blasted by the rapid expulsion of water out of my mouth and nose at same time and the endless dry heaves that continued long after the last drop of water was expelled.  The abdominal ache reminded me of my folly the following day.

I’ve decided to try to make the most of my 3 morning hours  and I admit that my focus is on spending this time rather selfishly by doing things that I enjoy and will ease the challenge of “pump time”.   I’ve been exploring options and here are some results….

Garage sales – great for Friday and Saturday mornings.  I like looking for bargains for just a few bucks.  I am a garage sale snob so if you don’t have curb appeal forget it.  I still wonder if anyone ever buys the mass amounts of holiday decorations that are always for sale.

Library – once in a while.  I don’t like being stationary and the library seems too much like being at home.

Volunteering – sorry but not during these 3 morning hours – at least not now.  I am not willing to give up these hours to others at this point in time.

Zoo, museum, etc.  I would love to do these but distance and costs are a factor.

Photography – this activity is good for one day a week.  Time and availability of subject matter can be problematic.  I would love to head to the Chicago harbors to take pics (for some reason I love boats, harbors, wharf fronts….would love to spend time with light houses).  Traveling would eat up about 2 hours leaving not much time to actually take pics.  The cost of gas is also factor to be considered.  Call me overly cautious or just very careful, but I don’t want to go wandering around some forest preserve trails by myself.  I am not sure why but I feel more vulnerable than I did a few years back.  I think a lot of little factors are at play…last years allergic reaction to bee stings, age, overall health, recent infection scare….blah blah blah

Fly fishing – this is my current favorite activity.  I grew up fly fishing in Idaho.  Good memories associated with fishing.  I learned to fly fish in rivers and streams and never really considered lake/pond fly fishing.  At a recent garage sale a man was selling some fly poles.  A couple mock casts and I was hooked.  He told me about their neighborhood association’s well stocked fishing pond.  We discussed different flies and techniques for pond fly fishing.  I bought the reel and pole, he gave me some line and flies – and permission to fish in his pond.  Two days later….sheer bliss.  The rhythm of fly casting is similar to riding a bike…you never forget.  Unlike bobber and bait fishing where you sit and wait; fly fishing is active.  You have to stay in the “here and now” and keep your mind focused on casting, the fly, the wind, and the fish.  You can’t worry about anything thing else – your mind clears and there are no tornado of thoughts.   It is not strenous so I don’t wear out.   Heat and thirst are only downsides – that and I want to fish longer than my 3 hour limit.  The ponds are fascinating as well with the huge snapping turtles, cranes, herons, and assorted other birds that definitely find my presence upsetting.  Finding the egg remanents of a turtle nest was a bonus.   The turtles seem curious about me and will often stalk me from the pond (reminds me of a nile crocodile waiting and watching).  I carry an epi pen but the bees are not a factor right now – in Aug/Sept they become too aggressive for comfort.  I introduced my two sons to fly fishing and they enjoy it immensely.  The youngest son and I went Sat/Sun morning and my oldest son went this morning.  Feeling the itch to tie my own flies as a former stepfather once taught (gonna hold off as this would be a good winter activity when I am on pump).

I went 3 times alone last week and can definitely see fishing in my future mornings at least 2-3 times a week.

(if you have any ideas – please share!!!!)

Medically – things are different as much as they are the same.  I had a klutz moment when hooked up to feeding tube.  Somehow tube got caught on kitchen cabinet knob and while pivoting to release, I lost balance and fell pulling tube out. Due to recent silver nitrate treatment and granulated tissue there was a lot of blood so I didn’t even attempt to reinsert. Off to spend some quality time in ER (thankfully it was around midnight so it wasn’t busy and I was back home in 3 1/2 hours).

Treatment for stoma site has continued without much success.  Next step is surgery and I am waiting for surgeon’s office to call and schedule.   Dreading the actual surgery and the recovery period but ever so hopeful that it will help.

Seeing a physical therapist once a week to help learn how to strengthen core muscles in spite of  pain.  This will be important following surgery.  It has helped some and I am grateful.

Speaking of grateful, I am eternally grateful to my homecare nurse Mary.  She suggested a drain bag for j-tube when not hooked up.  Awesome – it allows the bile to drain and I have practically eliminated daytime bile vomiting.  Still have issue with nausea but even that has been reduced significantly.  Because bile doesn’t drain at night, I still have issues every night but I am thrilled with daytime improvements.  Woohoo to Mary!!!!

Due to infection had to have PICC (iv) line removed from left arm and a new one inserted into right arm (love my infusion nurses Joy and Pat).  Two weeks of very intense discomfort but much better now.  Some irritation/discomfort after any significant lifting or use of right arm (yeah, that includes fly fishing) but at a very manageable level.  It will take time to build up strength in left arm and to retrain myself to limit right arm use for lifting.

By the way, does anyone know a good sugarfree fruit gum that holds flavor?  I am not sure if it is taste bud damage or what but most seem to lose flavor within a minute or two.

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Oh, and for those of you wondering……YES, I have been catching fish!  Caught enough a couple of times to feed the boys lunch once and dinner once.  Many are too small so they are catch-and-release.   Bass, blue gill, panfish…are the ones I recognize (sorta).  No trout (damn).  May have to find some type of stream to really satisfy my fly fish itch…nothing better than fishing for trout.

And wait until I tell you about the patio squirrels!  That is a blog all by itself – complete with pictures.  Watch for it soon.