Saturday, June 22, 2013

What's it like being me #1

     Someone asked me one time what it's like to be me. I didn't really have an answer. I mean who thinks about what's to be like themselves. It just is, you are what you are, no one really thinks about it, not really. But what if we did? What is it like to be me? I've sat and thought about this for many hours. Honestly I really don't have an answer yet.  I think the reason it is so hard to explain what it is to be yourself is because we have never been anyone else. We don't have anything to compare it too. How could we? So I thought Id just kind of reflect.

     I think the most obvious is, I am always tired. Almost always. Until it's time for bed. I can lay in bed, restless, staring at the clock for hours, but I could fall asleep standing in line at the grocery store.  And I almost have.
     When you are this kind of tired you begin to realize how much energy your body needs just to do the simplest of things. Imagine the days you wake up and think "I'm not doing anything today", the days you don't even turn on the TV because it means rolling over to find the remote, and push the button. Imagine the days you are so hungover that your perfectly willing to just post a bucket next to the bed, except the night before you didn't even bother showering much less going out to party.
Now imagine doing that everyday.

     This didn't start with gastroparesis. In fact I think this may actually be my longest symptom. After as many doctor and hospital visits I've had, answering all the questions over and over again, I have learned a lot about my body. Ive begun to realize that maybe the rest of the world actually doesn't feel this way all the time.  

     Starbucks has always been my Godsend. I can outdrink any caffeine fiend on any given day. For years I've gone on and off caffeine due to doctors orders to lower my heart rates. Occasionally my 'in office' (sitting) rates will be 90 when off my beloved Starbucks. It would be exciting for about a day until I realized, uhm no, give me coffee and no one gets hurt. I drink coffee. Everyday. A lot of it. Oddly my stomach can handle it. And very occasionally I may notice a slight difference in my heart rate, but not any difference I can't triple by just changing my body position. I drink coffee, I think I'll always drink coffee.

     I'm not lazy. Okay, I am lazy. However I am not as lazy as I appear. I sit down everywhere. Mostly on the floor. I recline in every chair. I have to put my feet up. I adjust in my seat a lot. Like a lot.  Once I started really listen to my body I am understanding more and more why I do this. I'm restless, and it feels better lounging. Not just 'better', it feels like I can breathe. I'm not as dizzy. I'm not nearly as nauseous. That being said. I really do enjoy laying around on the couch, health related or not. Dizzy.

     I think people who have been around me will vouch for my tidbits and comments of spots. "White spots? Your good. Black spots? Hold onto the wall".  I've always joked about this, and I think many don't realize how actually serious I am. It's something I learned about my body a long time ago. I'm very good at not falling down. Maybe too good. This might be one 'symptom' that I have ignored too long and one that was joked about too much. In new visits it seems this is related to something.

    Long story short. White spots are bad too. Apparently, your not supposed to get floating spots when you move.

Hugs and Love - Jess

Thursday, June 20, 2013

It is what it is and what it is going to be

A little bit of an update I suppose. 
            I saw the doctor in Phoenix, AZ, at Arizona Center for digestive health.  Although, I hate waiting I did like him. He seemed pretty knowledgeable. I guess as a gastroenterologist specialist that is his job though.  A lot of talking about that last few years and symptoms that “may or may not be related”.  He was not quick to jump into placing a feeding a tube as my primary doctor had recommended to him.  He believes that my GP may just be an aggravating factor to the root cause of issues.  He ordered some tests that I think are to rule out the “simple”.  He talked a lot about dysfunction in my autonomic nervous system (ANS), which is ironic because I had been researching something called POTS do to my erratic heart rates. POTS is a kind of like a subsidiary of and ANS problem. I think.  It is all VERY confusing to me.  The internet says testing in the ANS is typically done starting with a tilt table test.  As dizzy as I am this test does NOT sound fun.  It has not been ordered at this point though so I will not worry about it.   
            Yesterday I had a CT small bowel enterography done. Super fun! Not. I am pretty positive there is some evil person in research that say “Hey this person vomits anything that goes in, lets require a test that makes her drink TONS of barium and NOT vomit or start over”. Okay, maybe not. But the test just sucked. I had to drink a lot of very thin barium over an hour. Now the amount would have been a lot for a normal person (I think) but for someone with GP it is just not fair! Whole new meaning to “I vomited in my mouth a little”. Luckily, I had a fantastic nurse who comforted me through it all and never once made me feel like a baby.  It really is true that a good nurse will make or break a visit. Between her and the nurses at the IV infusion center I believe Yuma still has some good ones.  Had iodine of course as well, I really think iodine is cool. I can feel it’s every move in my veins. So that was easy.  CT took for what seemed like forever, and ended just in time to fill the trash can with a crap ton of hurled barium. The rest of the day wasn’t a picnic, nor is today.
Even weirder testing to continue. Have had some crazy lab work done, tests I definitely have never heard of. I have had A LOT of labs taken.  Still waiting on results.  My blood flow was very slow on draw day. It’s never a good sign when the technician mentions how your veins are dehydrated. But they took a lot of blood so I think I will blame that for now.  Seriously, it amazes me sometimes how much blood they can take and we just don’t run out. The body really is pretty amazing.
I have learned many things about my body and just how amazing it is. Well, not my body specifically but the human body in general.  I am very much a patient of Dr. Google. I look up everything! Sometimes it is good; it gives me something to talk to my doctors about. It has been helpful at times and very UNHELPFUL others. My local GI doctor likes that I Google, my primary hates that I Google.  Honestly, I’ve started to not as much because reading into the whole ANS stuff is so confusing, and frankly scary.  I’ve learned it is just time to take each day as it is.  I’m sick of being sick and tired of being tired. But it is what it is. I mean really, I can’t change it; I can only change how I respond to it. That’s all I need to do, because really it just is what it is.
Hugs and Love,

Tuesday, June 18, 2013

The Hardest Part

       I think the thing that is most frustrating about being “ill” is the moments I feel good; being too ill to do most things, but well enough to do others.  Lets take facebook for example. I can post about the “bad things” going on. I can post all about vomiting, bloating, pain, and dizziness. Then I feel like a whiny baby. Like I’m being a big attention seeking wuss.  But if I post something about “good things” I feel fake. Like I must not be sick if I can do this or that or if I can enjoy things like a normal person. 
        It’s really the one thing that has truly made me understand the complex situation that those with chronic illness or invisible diseases are going through.  Honestly it’s hard. I don’t know that I have accepted that perhaps I fall into that category.  I’m not sure that anyone realizes how quick any of us can fall into that category. 
So what happens when you do end up in that category?
       You get scared. You get angry. Maybe you cry. Maybe you laugh.  Maybe you realize how blessed you actually are. Maybe you do all of the above. 
       Every reaction is wrong, and every reaction is right.  After chatting and talking with people from an amazing support group I found online I think I have realized that there is one reaction that we all feel.  Longing. Longing to be accepted. Longing to be believed. Longing to be left alone. And longing to be held. We all long to feel better, and to find a cure. We long for our new friends to feel well.  We long for our family to accept the new us. Because lets face it; we have changed. 
Most of all I think we all long to accept ourselves; our old self and our new. 
- Hugs and Love,

Friday, June 14, 2013

The low down.

      A few years ago I had my first anaphylactic reaction. My life from that point on has never been the same. I was tested for allergies. Everything came back negative. But touch me with a peanut/tree nut prepare to stick me with an epi pen. I was diagnosed with idiopathic anaphylaxis, idiopathic uticaria (hives), and idiopathic allergies. Many visits to ER and Urgent Cares did this make! To this day, I cannot have nuts, nut products, nut byproducts, ect. And to this day. That's the easy part.

     Towards the end of 2012 I was having flu-like vomiting fits. One weekend I was vomiting blood. I was not too alarmed as working in an animal hospital I was keen on colors of blood and possible meanings, ect... Still I knew it warranted a visit to the doctor.  At this point I had gone off gluten for almost 3 months after a suggestion from an urgent care doctor during one of my allergic reactions. I had an upper endoscopy performed and biopsies were taken. My gastroenterologist believed that I had celiacs by symptoms but was sure that the biopsy would come back negative as I had been off gluten for some time. The biopsy came back strong for celiacs disease. Okay, NO nuts and NO gluten. Super. Diagnosed with celiacs and chronic gastritis. 

        Vomiting continued. Sometimes I'd go weeks, then sometimes only days. My gastro doctor decided to order a nuclear gastric emptying test. It sounds like a crazy out of space procedure. But really, I ate an egg (which I hate) that had some nuclear matter of some sort, I couldn't taste it? And laid under a machine for what seemed like forever. I was able to watch the screen while I was there but slept for most of it. When I woke up at the end of test I could see that very little of this nuclear egg had left my stomach on the screen. Then I was able to leave. But not before I threw up the egg on the poor technician's shoes. (Sorry guy)! Luckily, the test was complete and I did not have to start over. February 2013 - diagnosed with gastroparesis.  

      This is where the fun begins. At first it was okay. Eat less, more often. No problem. I've been on a "diet" my whole life. Medication trials, ect.  Suddenly it didn't matter. I could rarely keep food down. Then suddenly I couldn't keep food down. Ensure and boost and applesauce became my best friends. Then they all hated me too.  Then I kind of gave up. I eat what I want because it comes back up anyway. If it taste good once, might as well taste it twice. Right? Wrong? Finally, it has taken it's toll. I'm traveling to Phoenix, AZ tomorrow morning. Well, actually this morning, to see a gastric specialist. With hopes of some kind of guidance, support, and hopefully nutritional means. My doctors in Yuma agree it is time to place a feeding tube. Which I agree. Because I'm freaking starving!!!!! I am hoping the specialist in Phoenix will place it there as it is done so much more often than it is in Yuma. And from that point we can work on finding a "fix" to get on the right track I've been thinking of starting a blog, ect for sometime now. And figured tonight as I sit here and should be sleeping, but can't.... Would be a good time. So there is my story. 

   Trust me it goes much deeper than this. And if you opt to follow me, I can promise that this will UN-organized and all over the place. Many will think it's negative. Many will wonder what's the point.  But here it goes!

 Hugs and love to you all -Jess