Wednesday, April 22, 2015


I posted a new profile picture the other day and received an overwhelming positive response.  Such sweet comments, messages and text's followed.  Thank you all for making me feel so good.  I thought I would update you all on the inside of my body since the outside doesn't really match.

I think there is a fine line between denial and acceptance.  You see, I have a disease that I can't do anything about to make it go away.  Yet, I live with so much joy and happiness and I try so hard to ignore this disease destroying my body.  Ignoring it sounds like maybe I am denying it, right?  Like I'm not really accepting what's going on.  Except that I do accept it, I just can't do anything about it physically.  I can't take a magic pill and cure it.  I am aware of what could possibly happen with my body.  The doctors have told me but they have also told me that I am so unique that it's hard to tell what the future holds.  Being unique is great.  I prefer the uncertainty of the future over being told I have no hope of living another week.  I get to live.  I get to breathe fresh air every day and I get to laugh.  I get to choose how I want to feel emotionally and I get to choose, for the most part, how my day will go.  Choosing to throw the yucky out the window and let in the happy doesn't exactly mean I'm in denial.  I know what's going on with my body.  I feel it constantly.  I've accepted that I'm not normal and most likely won't be, ever.  But there's this thing called hope and I hang onto it so hard.  We have this hope as an anchor for the soul, firm and secure. - Hebrews 6:19.

This past year has brought some new challenges.  I had the PICC line put it and was on TPN for a short time one year ago and after coming off of it, I lost all the weight that it helped put back on.  I just couldn't get enough food in.  I saw the GI specialist and it was determined that I needed to undergo further testing before he could help me.  I put off one of the tests which prolonged everything else.  Anyway, I have since done all of the uncomfortable tests and they have all come back abnormal.  I will see the doctor again next month to discuss it all but at the last appointment he said that his hands are tied with me.  He said he was the top motility specialist in San Diego but that didn't mean someone else couldn't help me.  So, if you know of a great gastroenterologist that specializes in motility and understands mitochondrial diseases, send me their name.

The two most recent tests were done down at UCSD bright and early in the morning.  My dad took me to the first one which was the gastric emptying study.  We went down to their nuclear medicine department where I was fed a special breakfast.  I ate scrambled eggs with nuclear dye, bread, peaches and milk.  I actually really enjoyed it.  The tech explained that I had to wear gloves to prevent the spread of all the radiation.  I thought about that as I was chewing the radioactive food.  In my mouth. And then swallowing it and letting it sit in my stomach.  I then laid on a gurney and under this camera that would take pictures of my stomach at 1 minute increments for a total of 90 minutes.  The tech told me that most people are out of there after the initial 90 minutes so I was looking forward to going home.    I watched the white spot (my radioactive breakfast) on the screen for the next 90 minutes.  Oddly, I couldn't tell when it was moving down.  It really looked like it was just sitting there.  I started feeling what I always feel after eating, which is really crappy.  I asked the tech if everything was moving along like it should be and he said that he had to check with the radiologist but from what he was seeing, it looked like I would be staying for the 4 hour test.  Great.  My dad and I people watched the next few hours while I waited for my food to get out of my stomach.  I went back in for a final picture and saw the radiologist who was intrigued by my dysfunction.  As my dad and I headed out he asked if I was hungry and I said apparently not since my food is still in my stomach.

This is where I laid still for the test

Caution Radioactive Material (I was the radioactive material)

The following week I went back down to have a CT scan.  I arrived and was instructed to drink 3 bottles of barium sulfate.  I haven't had 3 bottles of anything in a very long time so I tried to explain to the nurse that the reason I am here is because my stomach doesn't work.  She said with out the contrast, they can't do the test.  I gave it my all.  Half way through the first one (which tasted like grape otterpop) I started crying.  There was no possible way I could do this, even with all the positive thinking in the world, it wasn't going to go down.  However, I had to because it was very difficult just getting the appointment and getting down there.  I somehow managed 2 full bottles!!!  The nurse took me back but had me wait on stand by because they wanted to make sure the fluids completely went all the way through my stomach and intestines.  We didn't want to take the scans too early and be a total waste.  I went back and did the scans and the radiologist came in when I was done to help me up and send me on my way.  The rest of that day I was absolutely miserable.  I needed to get tons of fluids in my body to flush the barium out but there was no way anything was going in.  I got hooked up to my IV and spent the rest of the day on the couch, in pain.

A lot of time is spent like this now.  

Pain is a new symptom that has snuck in and kind of put a cramp in my style.  There's not too much I can do to alleviate it other than a long bath and bed but that's not always possible.  There are many days I spend more hours laying in my bed than I do out of it.  The kids are so easily adaptable and have no problem hanging out with me in my room.  They don't make a fuss at all when I say it's time to get ready for bed... at 6:00.  And they won't complain when I say it's time to leave (a party, the park...). They get it.  I scored big time with these kids and husband.

I am blessed.  Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who live him. James 1:12

I'm accepting all that is going on but I still hold onto the hope that I really will heal.  Having that to look forward is much better than just thinking about not ever getting better.  We can call it denial if we want but I call it faith that our God will heal.

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