changes

Housing:

We found an apartment.  It’s half a house.  We’re moving the first weekend in June.

Pros:

  • It’s in the same town as my current job (see also “cons”).
  • We don’t have to spend all our free time and energy hunting for and looking at rentals.
  • We can start packing (see also “cons”).
  • It’s got 1 and 1/2 bathrooms.
  • Washer/dryer hook up.
  • Basement stairs are easier to navigate than our current ones.
  • Looks like a quiet street.
  • Cheaper than a lot of what we were seeing for same size/features in our current city.

Cons:

  • The town it’s in makes it a bit worse of a commute for my husband.
  • If I get a new job in the Big City, then it will also be a worse commute for me (I just heard on Thursday that my boss may be stepping down, which means I am more motivated to get a job elsewhere).
  • It’s owner occupied.
  • They have a dog.
  • Time to start packing!

 

Job

I have a phone interview for a new job, this is the one I mentioned I applied for.  It’s a brand new job, i.e. the job didn’t exist before.  My hope is that it is a good fit and that I get it because work is just total shit:  My “new” boss just told me he may have to step down (long story but the short version is he got a good offer to do something that our employer is unable to fully support because they just suck).  So this means possibly a newer boss, or worse, a new old boss.  Holy shit that is just a nightmare scenario.  I’ve tried to reach out to a coworker who is in a leadership position at work – I had thought she and I were close to friends, we talk about personal stuff together at work, we’ve had some contact outside of work, and we seem to get along well.  But I’ve tried to get a hold of her, hoping to get some more details about whether it seemed likely that old/new boss would be stepping down and what the word was on who might be stepping up, and she’s not getting back to me.  This concerns me, quite a lot in fact.  I’m hoping that she’s just busy but I’m starting to feel a little like she’s avoiding me.

 

Health

My gut’s a mess.  It has been on a downward slide since January at least but the trend picked up more in April.  I thought at first that it was rebound from the pain meds but it’s been quite a while since I stopped taking them and it’s still going.  It’s bad.  I’ve lost more weight and I can’t eat without starting the cramp and purge cycle, no matter what time of day.  I called my GI doctor on Friday – I really agonized over doing that because I wasn’t sure how to frame this.  The problem is, she’s giving me very mixed signals.  My impression is that she feels that she’s looked at every possible GI angle and come up with nothing.  Which I can buy for the sake of argument but that doesn’t mean she gets to wash her hands of me.  The reason being twofold:  One, whatever it is,  I still have GI symptoms and no one else is going to want to treat those so it’s her job (even if she’s just writing scripts).  Two, she herself has said “if anything changes or anything new comes up, please call”.  And twice now, I’ve called and twice now, she’s blown it off but has ended the call with the same statement.

So I called.  It has changed.  It’s broken through the routine meds that I take and even my “break through” meds are less effective.  I’m losing weight too fast, and really, someone other than me should be worried about my nutritional status since on a “heavy eating” day – which I pay for dearly in terms of pain and toilet time – I am not eating even 1000 calories a day. My average day’s intake is about 500.  Yes, I know that is not enough.  And I am indeed hungry.  I am, however, averse to so much pain and if I ever want to get away from the toilet and out of the house, I don’t have the option of eating.

She didn’t call back.  I’m going to call Monday and make a bit of a nuisance of myself.  If I get the same response as I’ve gotten, i.e. a phone call where she explains/dismisses my symptoms as more of the same and then advises me to call if anything changes, she’s going to be treated to a rather substantial piece of my mind.  I’m also going to call my primary care to let him know about the nutritional issues.  If I can’t get the GI doctor to give a shit (no pun intended) I suspect he’ll give a damn.

And you might wonder – well, actually I think my readers who are on the patient side wouldn’t wonder but a health care provider reading this blog may wonder – what I expect her to do.  I expect her to actually exhaust her diagnostic options…to consider the thing I’ve been considering for a while now which is chronic ischemia/vascular insufficiency.  The symptoms match it.  That no evidence of ischemia has been found on colonoscopy is (a) reassuring that my bowel is not going to rot away but (b) not terribly conclusive since you get patchy evidence and those patches may not be the ones you sampled and/or may be in the small intestine…where the scope doesn’t go.

I also expect her to give a fat flying damn about the body that is attached to my gastrointestinal tract.  Not one GI doctor, including the one I saw when my BMI was down to 18.3, has had any good nutritional supplementation suggestions.  Nothing.  Not oral, not parenteral (which, btw, I do not want but a little help researching and obtaining a non-dairy high nutrient supplement would be nice).  The closest I got to this was the GI doc in Ye Olde New England Outback who said he would order an appetite stimulant.  No seriously, he did.

 

So…

here we are.  Spring is over.  Summer is coming.  I’m moving. I may be starting a new job.  I am thinking of changing GI docs or at least changing gears on the GI thing from “wait and see” to look and see and treat what you can, no really, I mean it.  But the job thing might change that even. Lots of change in the air.  I just hope I can keep up.

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5 Comments

  1. Good luck!

    Reply
  2. queenofoptimism

     /  May 13, 2012

    Yes indeed. Good luck!

    You’re amazing. A woman of intelligence and strong spirit that keeps up no matter the circumstances.

    I’m glad you can begin the process of getting settled at home. Hooray for the phone interview! You’re gonna be great, kid.

    Damn coworker. What has happened to curtesy these days?

    I wish the general population and medical population could know your GI story. The whole entire story. It’s so wrong. We all should be demanding more for you and if applicable, ourselves. I admire you for not backing down. The docs need to act after listening to what you need to do to manage day to day. You are begging for help and they are letting you wither away. Not cool.

    Considering all of the comments I’ve made in the past 24 hours or so, I think you may realize that you are on my mind. While being excited about a new job for you – I am super concerned for you. The EDS may really change the game, right? I mean in terms of new or different specialists who may help. True or am I off base?

    With the nutrition, we need to connect with a geriatrics person or caregiving website. I remember looking at a site called iHerb – no idea if it has what you need. I used to drink special k protein drinks that were like kool – aid rather than a soy shake.

    I am not seeking to be know it all – mi just feel strongly that t this very moment in time, you need some extra helping hands.

    Dyspatient – how can we, your devoted readers, help? Let’s get a list together of some questions that need answers. Volunteer web searchers can help: example- nutritional options, journal articles to share with your docs (?), EDS + GI symptoms research, EDS specific support groups / message boards or blogs (?). Whatbcanwedo?

    Reply
    • Help looking up some lactose/milk free nutritional supplements would be excellent. I’ve seen some stuff online (of the carnation/shake in a can variety) but they seem to all come in massive packs and/or have milk products in them. I’m trying to avoid milk products entirely until I know for sure that I don’t have a milk protein allergy/intolerance.

      I don’t know about the EDS diagnosis being helpful. I haven’t had the big “wrap up” appointment with my primary care yet. I think that’s where I need to start. I put it off – didn’t want to do it over the last few weeks since I am just doctored out right now. It would have been a good time to do it, but if I went in with a bad, burned out attitude, it probably would not have been the most effective use of appointment time. ;p

      Reply
  3. I agree, the EDS 3 doesn’t change much. Theoretically should be brought up to anesthestists and surgeone before surgeries as your scarring/healing/hernias/prolapsing can be worse; also sometimes resistant to anesthesia. If having babies also relevant. Apart from that, it’s preventative and sympotmatic treatment. Exercise cautiously to prevent and physio etc if issues come up. Some do an echo to screen for mitral valve prolapse. I think why when they saw I was hypermobile, they said it doesn’t change anything, but “just so you know.”

    What supplements do you need? Oh like nutritional? I found lactose free probiotics but they have corn in them. …have you ever looked into elemental supplements that are amino acids etc?

    Reply

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