2/29/16 – A Machine To Warm My Bread

So I thought as the fates afforded me an extra day in this, the shortest of the months, I should take advantage of the gift and actually write a blog.  Needless to say things have been a little hectic.  So lets see where to start….

If you follow along you know I was scheduled for Yale last week on Wednesday, and even though I wasn’t feeling well and my tube was clogged I would not go to the doctors because I refused to miss my Yale appointment and have to wait another 3-4 months.  So I didn’t go and I DID get to Yale.  I liked the new Doctor at Yale just as much as I liked the other one, and was really pleased with her approach.  She agrees with me that the bowels not functioning at 100% or not functioning properly are likely responsible for a portion of my “issues”.  So she rescheduled me for the Analrectal Monomentry, and she also added another bowel study that the last Doctor didn’t bring up.  She also wants me to do a bowel cleanse using my tube (I’ll spare you the details of that), in order to try to help myself feel better in the meantime.  Of course I need to get the tube cleaned out to do the cleanse – which is part two of this particular story.  So I have the first test this Wednesday, I have to schedule the second test after the tube is fixed and I do the bowel cleanse and then I see her again in the end of April ~ so that’s that.  As an aside I still haven’t heard back from the surgeon in Jersey who’s reviewing my case, I have an e-mail out to their office to see where we stand though.

Then there’s this tube mess, so Wednesday was my Yale appointment and that was an ok day belly wise.  Thursday was the most horrible day I’ve had in a VERY long time, the pain and vomiting and being nauseated were simply out of control to the point where I cried for hours, something I have not done in ages.  I actually felt so bad I could not handle getting up and going to the hospital, I just couldn’t even move.  I finally fell asleep Thursday night and though still sick on Friday when I woke up I knew I had to get it together and go.  So I called my regular G.I., they of course said go to the E.R. – and I did.  That was okay, they gave me a couple rounds of I.V. nausea meds, and some pain med ~ which that cocktail ALWAYS makes a difference.  They tried to flush my tube and could not, so they called in the G.I. team.  They looked at my tube and said “we can’t touch that it’s a surgical tube, call the surgeons”.  Waited another two hours til the surgeon showed up.  He tried to run a brush through the tube blind to see if he could unclog it (yes that was as rough as it sounds) eek…and that didn’t work either.

So at that point he gave me two choices he could admit me to keep everything IV for the weekend but they would not do anything until this week, or he could let me go but I have to try to stay hydrated etc. by mouth.  Needless to say I picked the latter of those two evils, I’m so sick of hospitals.  So now it’s Monday morning and his office is supposed to call me to set me up with a surgeon in radiology where they are going to try a different brush, but use it WHILE scanning me so they can see where they are going and what they are hitting while running through it.  If that doesn’t work then I have to go back to the operating room to have the tube removed and have a new one surgically placed.  I’m not really thrilled about the prospect because I know this too will be an open surgery, but one way or another it needs to get done.

So there we are, by all counts – I’m a bit of a mess at the moment.  Funny aside though every time I start to feel a little down lately I think of this.  I am friends with a young lady who does missionary work in Haiti, and she always has a good story or two to share when she returns.  Well she returned just recently from one of those trips and told me this story which helps me get a handle on “perspective” when I feel a lil “woe is me”…

She was doing an English Language Lesson with her group, and the word appliance came up.  Obviously for US a very common word that covers a territory so large that we have to designate “large and small” appliance in our own everyday speech.  Well in her teaching she tried to use a toaster as an example of what an “appliance” is and the thing that sticks out is their reaction to learning all this.  The only thing they had to say was (while scratching their heads)…”you have a whole MACHINE just to warm your bread?!?!?!?!”.  They were flabbergasted by the concept, keep in mind she has to sleep inside a mosquito tent when she goes on these trips.  So the THOUGHT of a whole machine just to warm bread, which can easily be eaten at room temperature is just unfathomable to them.  Apparently it was quite a conversation, and it’s a good reminder for ME.  Poor me I have a tube – oh so sad right?  Yeah okay I also have machines to curl my hair, straighten my hair, warm my bread, write this blog, wash my dishes and clothes and dry them for me, and on and on on let ALONE the surgeons at my disposal to PUT this tube in me and the machine to pump food through that tube all to make me “ok”.  So before I grab my crying towel over my current situation I’m just going to say I’m grateful for the million gazillion things I DO have – including a machine to warm my bread.  Thanks for stopping by – talk again soon 🙂

 

 

Tuesday 2/23/16 – It’s been a while!

So yeah it’s been a month since my last post – goodness how time flies when you are doing crappy huh!  Well the summary is…the last month has been pretty rough, I’ve easily spent 80% of my time in bed either sick (actually active vomiting etc.) for 10,,12, 20 hours – or in bed sleeping for 24-36 hours after doing all that vomiting.  My tube is clogged, and in the last month I’ve only pooped twice.  Normally I wouldn’t share such things but if you know my story and you follow my blog then you know this is an ongoing issue.

So in the interest of “self management” I have in fact NOT called my doctor regarding being so sick OR the fact that my tube is clogged.  You’re likely thinking I’m nuts but alas that is not the case.  See the appointment at Yale New Havens Motility clinic is tomorrow – the 24th, and I’ve been waiting over 3 months for this day to arrive.  So if I had of called my doctor last week and said I’m going poorly my tube is clogged etc. etc. – it’s VERY likely that I would have been spending some time in the hospital and if I allowed that to happen I’d miss my Yale appointment and then I’d have to wait ANOTHER 3-4 months to get in and yeah no I refuse to do it.  As long as my life is not in danger, I’m not budging – once I go to Yale and get THAT going THEN I will call my doctor and get the tube taken care of and all that.

I’ve been feeling a little down because this “hard patch” seems to be dragging on a little bit, then in the midst of all that I have to spend two days this week going for MRI’s and all kinds of (not so) fun stuff – to determine if a bump they found is an issue and if there is a tumor in my uterus OR if I actually have Uterine Ablation Syndrome.  Whatever it is I just want to get it taken care of because OMG the pain of that bites on top of being sick – eeshhhh (major eye roll right there).  Did I mention I hate doctors lol.

Honestly that all sounds like a lot of complaining and I don’t mean to, I mean it’s okay.  I’m NOT in the hospital and I AM going to Yale tomorrow and well – it could be worse so it is what it is, and I’m okay with that.  I’m still pretty darn happy I’m alive and here to experience both the good and bad days.  Lets see –  the one clinical trial I tried for where they are testing a new medication for I was excluded from because of my “complicated history” – ha ha – ME complicated – pluhaeezee.  I haven’t heard from the Doctor in Jersey yet (note to self send him an e-mail this week).  Otherwise I’m just floating in the milk, doing my best to do my best and keeping hope, so how have YOU been?  Talk again soon, have a great day.