Tuesday, December 27, 2011

My Birthday

Just a quick post as it is starting to become a bad pain night and I think I am going to curl up in bed pretty soon and just read my book for a while.  I know it has been a while since I have posted (yet again) but you all understand why posts can come few and  far between at times and other times I could post multiple times a day.  For today though, I thought I would post about the really weird birthday 'theme' in our family.  In case you didn't know today was not only my birthday but also my nephew's birthday.  We were born on the same day exactly 20 years apart, but that is not the strange thing about our birthdays.  The somewhat creepy and cool fact is this:

My grandma on my dad's side was born on August 27th and gave birth to her first born child exactly 8 months later on April 27th.  My dad then had his first born child (my brother is adopted) 8 months later on December 27th.  Exactly 1 year later and my nephew, the first of that generation, was born.  So to summerize:
Nan - August 27th
Dad - April 27th
Me - December 27th
Nephew - December 27th

Not only do we happen to like the 27th of the month, the very strange fact to add to this is that I was born at 29 weeks (3 months premature) at 11:46 pm.  Another 14 minutes and I would have been a day later. I was actually supposed to be born on March 17th in case you are interested.  Then, my nephew, was actually about one week overdue!  So add in we have 4 generations on the 27th, and two of those were not supposed to be on the 27ths at all.

Funny thing is that my dog was born on July 29th but the vet has his birthday marked down as July 27th even though I point it out that it is wrong every time that we are there!  Another strange birthday fact in our family is that both of our dogs were born on the 29th.  My dog is July 29th, our other dog is June 29th.  My mom and my brother's step daughter also have the same birthday, my cousin and her nephew share a birthday and I have an aunt and uncle that also share a birthday.

We had a good day.  Mom and I went to pick up the dogs from the 'pet resort' that we take them to when we go out of town then we came back home and I decided that I would rather a few more hours of sleep in my nice waterbed (did not sleep well the last few days as I was sharing a futon with my nephew and lots of stress going on) instead of going into town and doing some boxing week shopping.  I got up then and gave K his birthday present from me which he loved.  I got him a few halo lego sets and he thinks he is getting away with something lol.  I keep telling him that he is allowed to play with the lego but dont even think about asking to play the video game.  He gave me his gift to me which was a little zebra plush stuffed animal and some chocolate coins that he picked out all on his own because he knows I like zebras.  We built and played with one of his new sets (bought him two) for a while before we had to get dressed. Got dressed and still had to wait like another hour and a half until my brother and family decided to show up.  Had our traditional birthday meal of chinese food and then had our dessert.  Because of us sharing a birthday it doesnt make sense to buy two cakes and since I have always loved ice cream cakes, we now get K a birthday cake (cupcakes actually this year - half vanilla and half chocolate) and I get an ice cream cake (Supposed to be half cookie dough blizzard and half reese's peanut butter cup but it ended up being just the top layer of cookie dough and reese's mixed together).  Kyler then opened his gifts (a bunch of Lego kingdom sets from my parents, movie and money from my nan, money from my aunt and money from his dad) and I opened my cards (money from my parents and from my nan).  J (step-niece?) wanted to sleep over so for some unknown reason mom agreed to it (not impressed!) and later (when my brother decided to finally drop off her PJ's) we all started watching "Kung Fu Panda 2" and J fell asleep soon after.  And basically that brings us up to this point in time with me writing up this entry.

Okay, that was enough for tonight, my shoulder is starting to cause me a lot of problems and does not like being on the computer too much anymore which really sucks as I live on the computer!  I do have some other posts that I need to get up soon.  One of them I wasn't going to post as it was a doctor's appointment that went so horribly wrong that it was actually funny, so I figure you guys might like the laugh (and want to document it for my 'records' as well).  Then there is a post about a 'doctor' that believes my cousin (well my cousin's son) has EDS and one about how my body, and family, is not liking a lot of scents and fragrences anymore.  Those will come within the next few days hopefully!

I hope everyone had a great holiday season and all the best for the coming new year!!!

Monday, December 5, 2011

Cardiologist / Internist / Gastroenterologist (?) Appointment Outcome

Hmm I thought I had already posted about this appointment but for some reason it didn't go up.  So here it goes again (shorter version as I had to remember it all to type it up!) Well I headed back in to see Dr. C. to go over the barium swallow study and ask a few questions.  Long story short -

- She says I have a 'lazy stomach' aka delayed gastric emptying aka gastroparesis.  Basically food is sitting too long in my stomach and not passing through my system for way too long (this is probably also why it took a week for the barium from the study to pass through!).  The barium study showed food particles left in my stomach and by taking that fact, the constipation issues, the severe heartburn, the very often nausea and the fact that I have absolutly no desire for food and can only eat items in very small quantities (like if I eat 1/4 of a hamburger at noon I am full for the day and don't feel any hunger except for slightly at bedtime which passes with very minimal food intake). 

She doesnt seem to think that I need to have an endoscopy (based on the swallowing issues alone) but agrees that it is best to do one.  She is also going to use a balloon to try and open up the esophagus to see if that will help with the swallowing problems.  Going over the sheet that needs to be filled out, she wrote a pile of notes on it!  Everything from "Get a good nurse - hard IV access", to "No beta blockers - keep check on pulse and bp" and finally "NO Xylocaine".  There was a minute there that she was trying to argue giving me the local anesthetic anyways to help relax the gag reflux but finally relented when I told her about my history with locals.  She seemed surprised when I asked about taking a beta blocker before hand and asked who told me that I shouldn't and then I had to remind her that she told me to stop them before surgery because the fasting messes up the autonomic issues and my bp bottomed out last surgery.  Not only am I to not eat anything after midnight the night before but she also wants only liquids (salty liquids at that) the entire day before so she can hopefully get my stomach actually empty to do this test.  She mentioned that she is a little concerned with the fragility of my body tissue especially as she wants to do a balloon to check for any strictures (I think that is what she said).

And finally, I convinced her to change my beta blocker medication but keep the same equivilant dose.  It was a tough fight but I finally got her to acknowledge that I knew my body better than her and that I was coming up to tolerance with the one I was on and wanted to switch to a new one before I became tolerant to it so that dosage increases don't have to occur.  She was firm that switching the medications wouldn't do anything but mom and I both told her that in the past it does.  It's not necessarily the active ingredient but something makes them work better when they are rotated out (like all my other medications).  On the autoimmune front she wants the tests re-done and seemed to just dismiss all the autoimmune issues I have been having and told me that I need to find a new rheumatologist (well duh!!!!).

But I got my meds switched, the endoscope ordered (not til january though, don't want to have it done around Christmas as there is so much traveling and I have enough eating problems to deal with as it is) and I got yet another pretty title to add to my evergrowing list of disorders.  This is a very common issues in EDSers though so it's not a shocker at all.  What sucks though is that she didn't give any suggestions at all at what I can do to help those issues.  How can I get more food in when I don't want to eat (if I try to force myself I reach a limit where if I take another bite I literally throw up), how can I swallow food, is there something that can help with the digestive issues, is there possibilities that there are actually food allergies that are making this issue worse?  All questions with no answers.  Seems thats all I get anymore - Just more questions with no answers in sight.

My mom is slightly happy though that there is finally something we can tell to peolpe when I go for a meal and can literally only eat two bites.  She looked it up and was surprised at just how many of the issues I actually was having (she used to question the 'severe' part of the relux that doctor's always tack on).  It shows why I don't want to eat, why I CAN'T eat and more.  And of course it is just my luck that the ONLY symptom I don't have is weight loss :( That's one side effect I wish I had (especially after the appointment I had today!!! But more on that later!)