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Hi There, I'm Kris. I'm a quirky sort who loves silly jokes, sunflowers, music, divine interruptions and music. I am devoted to my nerdly, ginger-haired husband, our 3 living & growing kids, and missing our 1 Babe in Heaven. We journey together through this life, dancing to our own beat, while learning each step as my children and I are effected by a life-threatening & degenerative chronic illness called Ehlers Danlos Syndrome (EDS). Please look on the "What is Ehlers Danlos Syndrome" to the bottom right of the page to learn more about EDS. I believe I have been given this journey in order to over come it, and this is my story of how I get it done.

Wednesday, March 28, 2012

All by myself.

March has clearly gotten away from me.
LIFE has gotten away from me, such as it does I suppose.
Much has happened over the last month and some days since my last post; much accomplished & much not.  I had an OT/PT evaluation that was extremely educational & beneficial to me- it deserves it's own post (which I'm working on), so you'll know all about it then.  Cardiology gave me a full work up including a resting echo cardiogram, a stress test echo cardiogram, blood & a 6 day heart monitor test.  Everything came back great except that my blood pressure is too low (which we knew) & I have arrythmia stemming from both the supraventricular & ventricular areas of the heart (not at the same time, thankfully).  We've decided to put a pin all of that until May & decide then if meds are needed.  On the GI front, I've had a complete abdominal/pelvic CT scan after the results of my small bowel series revealed something abnormal-ish - a blip really - at the very end of my small intestine.  The same blip in the CT scan resulted in my first colonoscopy last Friday (whatever pride I had left after giving birth in my car almost 8 years ago is now gone forever).  During that test, the area where the blip was, looked fine (go figure!), though there was a growth found elsewhere that was almost completely removed.  I woke up feeling a horrible stabbing pain in my lower abdomen, when the Dr. walked in he said "Hey! That's where I took the mass from!" as if that were a coincidence. The Dr. then said "I think I got it all...but I'm not sure."  hmm... "It was at an odd angle, so it was difficult to see and get it all."  Well, what is it?  "I don't know, we'll have pathology look at it and you'll know in 3 weeks."  Is it a polyp?  "I suppose it could be, but it doesn't look like one."  Is it a cyst?  "No." I didn't ask what I really wanted to ask, because I figured he didn't know, since he didn't start out with 'You have cancer.' Another test, less knowledge.  This is getting frustrating.
I feel brushed off.
The nursing staff kicked me out before I was ready (in my opinion).  I couldn't even stand up without holding on to someone for dear life, let alone walk out to the car.  My Dad took was the one who took me, since my husband was working, but mostly because he faints at the sight (or even sound) of anything medical (he did not choose his wife wisely).  My Dad wanted to stop by his house and make sure his dog was ok (3 hours after leaving her with plenty of water & food in the nicely air conditioned house on an 80 degree day).  I begged him to just take me home; I felt nauseas and sleepy and I wanted my bed.  I fell asleep in the truck and the next thing I know, I had been left in an empty & hot truck.  I felt hot, and even more sick to my stomach, the world spun and I felt like I didn't have any air.  I slunk down to the floor of the massive Dodge Ram truck and opened the door where upon I fell out onto the hot cement.  Things went dark and then light again, then dark, always spinning, feeling horrible.  I couldn't lift my head.  What the hell was happening & where was my Dad??????  He finally showed up and asked what I was doing (and he actually sounded a bit annoyed!???!).  He got into the truck on his side and turned it one while I tried to climb my way back in.  I clumsily moved the vents so that the cool air could blast onto my face.  I found an unopened water bottle in the cup holder, stole it, drank it down and immediately got sick (in my Dad's empty coffee mug- ha!).  My Dad said nothing.  He asked me if I wanted to go out to eat (if you're imagining a cartoon with eye balls bigger than my head- you're be pretty much on target as to what I wanted to look like at that moment).  I said no.  Then he said, 'Well whenever I have a colonoscopy, I'm starving afterward and I go out to eat."  I don't feel hungry, I feel sick & sleepy and I want my bed (gee....I think I said that before....)  "Well," he said, annoyed again "I'm going to the drive through and will get myself something to eat."  He went to McDonalds.  I tried to go back to sleep to ignore the smells.  I was so happy to finally have gotten home when we finally did.  My husband & kids got home a while later and I tried some broth, but mostly I just slept.  6 hours later, it started.  I was so sick.  I couldn't stop vomiting.  I vomited for 2 hours straight.  I cried to my husband for help, but he couldn't wake up (he's been experiencing anxiety for the first time in his life, and some Doc-in-the-Box gave him Xanax). I literally couldn't stop, my muscles through out my entire body kept contracting and contracting, not even stopping to rest.  Then I started to shake violently and I really got scared.  I didn't know if I should call 9-1-1 or what!  I called my Dad, It took forever to say what was happening because my muscles were just constant, he finally understood and told me he'd be right over.  30 minutes later he was there, and the first thing he said to me once my husband helped me out of the house and back into that damned massive truck (!) was "Why didn't you just call 9-1-1?!" ~whimper~  Once at the hospital, things moved pretty quickly.  I was apparently in shock and they hooked me up to all kinds of things.  I kept seeing my Dad ask each professional if they could either admit me or discharge me since he had a plane to catch in a couple of hours.  "I have travel insurance on this trip, but I'd like to go on it if possible." he said with his condescending smirk.   I was discharged after drugged & hydrated & we got home around 4am, he left on his flight at 6.
It's taken me these few days to recover from the ordeal.  I don't know if it was because I couldn't eat for 2 days before the procedure and then got so sick, or just recovering by itself, but I still have no appetite at all.  I'm forcing myself to eat what I can, but I get so nauseas; and the meds the Dr. gave me at the hospital give me a horrible headache, so those don't really help me to eat. I feel so tired and sick all of the time.  I have to work though, sick or not.  My husband does not have a stable job since he lost his teaching contract in June 2010 so I'm it.  The bread winner (thought I don't feel like a winner- far from it).  Aside from feeling so ill, I'm having a hard time digesting how I feel by my Dad & my husband.  You'd think that a married woman who lives 20 minutes from her Dad & Stepmom (who was traveling at the time- they are retired & travel a lot) would have someone to help her when she can't help herself.  Apparently, I don't. I left my friends in California when I moved.  I'm all alone. This is a stark reality and it scares me.


  1. I am so sorry and so concerned to read this.
    Do you feel you feel that the only reason your husband was not a benefit to you was because he was drugged? or would he have been no help anyway? After all, you did say he doesn't have much of a stomach for medical stuff.

    The fact that your father was not listening to you bothered me. You did not just have a colonoscopy, you had a mass removed, and you are not a healthy strong big man, you are someone with a severe chronic illness. Hello! And dang it all, if you are so worried about getting on the damn plane, leave!
    You could get a taxi home or something.

    You need to have a big heart to heart with your husband, and possibly your father, that depends on if you think it will do any good. (I know with my father it wouldn't.) But with your husband, it needs to.
    You need to talk about how this is a partnership, yes, you are the sick one right now, but if he was sick, you would be there for him. Just as you are the main breadwinner right now. It's a give and take relationship.
    If necessary, you may need to have a few counseling sessions.
    But he has to come to terms with the fact that you need him. And as your disease progresses, you will need him more.
    You cannot get through this alone.

    It's rough moving and feeling like you left your support group. We moved to CA, and I felt I left all my friends and support here in NC. We were there for 2 years, we moved back, because we really missed our friends, and hubby was able to transfer back. Everything was great for a while, then I started getting worse, and everyone started having babies.
    I had no support from my friends any longer.
    We are alone here now. Just me and hubby to handle everything. The point. You never know what may have happened if you had stayed. You just never know. I NEVER thought these friends would have abandoned us. I thought things would slow down of course, but I thought they would be there. I even tried saying what we needed, reaching out, inviting over...everything. We still get invited to parties, but I can't do that.

    The biggest thing that bothered me with this, was the lack of attention, and advocacy you were getting from you husband, the one person who should Always be there for you!!

    good luck my dear.

    1. Thank you so much for your support & thoughts Wendy. My husband wasn't any help to me for both reasons; he'd started taking Xanax for the first time a couple of days before (the smallest dose)and the cumulative effects seemed to hit him that night, and he was just out of it, however if he hadn't been taking those drugs, he wouldn't have been any help to me either- because he faints at even the mention of medical things (childbirth was fun). I had a long talk with him after I wrote this. I found a Dr. for him to go to in order to work on these issues, that I'm a a point in my life & illness that I have no choice but to depend on him. He feels badly, and is willing to work on this- which helps me feel a bit more supported (though I'm still very nervous about getting sick). I also hope that we can get counseling together at some point as well.
      While my husband's reaction to this was not intentional, my Dad's was. This is a bit off the original topic, but I am realizing that my Dad has always treated me this way; last on his list and always have been. I've always somewhat put him on a pedestal because I was abandoned by my biological parents and he adopted me & raised me on his own since I was 13 (I've known him all my life though); however, I've worked in his machine shops & other businesses whenever I wasn't in school since I was in the 3rd grade, I helped develop study tools for him while he went to college, and then I even graduated high school by going at night and working full-time during the day to help with bills. It seems if I'm not doing something for him, I'm a nuisance in his life and treated as such- and it's time that I see that for what it is and stop allowing him to treat me this way. By the way, when I was a young adult, he finally found success with one of his business and has been retired since he was 48...everything I did in the past was quickly forgotten.
      I am so sorry to hear about what happened with your friends- I can imagine that was devastating. ((((hugs))))