Choose the Words That You Use...They Hurt Sometimes.

When we talk to those around us, I don't think that we really stop and THINK about what it is that we're saying, particularly when it is people we're vastly comfortable with and people that are chronically ill. Those seem to be the two
demographics that are open targets for verbal diarrhea of the most random kinds. Now, being a person that says very random, sarcastic, and--in my humble opinion--incredibly hilarious things, I understand the moment when a person says something and then goes "DOH! I shouldn't have said that!" But it's generally associated with people that I'm vastly comfortable with. 



Come March of this year, it will be 5 years of being chronically ill and, to the annoyance, chagrin, sadness, and 
plethora of other feelings of others, its' not going away--frankly, it's a rollercoaster ride of plateaus of the same, worse, maybe an itsie bitsie better, and then I tank...you get the idea. And in that 5 years, I have heard THE most amazingly strange things come out of peoples' mouths! Honestly, there have been times where I have had to either bite my tongue from lashing out at them--which is completely out of character for me--or I've had to physically hold my jaw up. I know most people mean well because they think by telling me that I "look good" or that I "look healthy" they think that they're giving me a morale boost or something. They're not. I KNOW that I look good and healthy on the outside, but on the inside I feel like rubbish. I have been told to "just tell people that you feel fine" and "don't tell them how you really feel" because I "wouldn't want to bring people down that are around me". I have also been told that "if you can go to [insert fun place here] it can't be that bad"--I heard that gem from a doctor! Well, my response to that is:: Is a person who is sick about...oh, 75% of the time not allowed to have fun? I have been told that I just need to try this vitamin and that supplement and this concoction because it helped so-and-so's Aunt Betty. I've been told that I need to stop eating carbs, sugars, and gluten--FYI, I don't really eat all that much, PERIOD. Just ask anyone who takes the time to be with me. It has been postulated that I have an eating disorder, had gastric bypass, or it's all in my head thus having done this to myself (NO offense to ANYONE who has had gastric bypass because it changes MANY peoples' lives, but I get told "Oh, you had gastric BYPASS...! I get it!")

 
My advice to anyone with a chronically ill friend is just listen. Listen to what it is that your friend has to say what their life is like. Ten to one they're putting on a show for you and you have ZERO clue what it's like to be in their shoes. Instead of throwing out a generic "well, you..." or "I think you..." LISTEN, truly, to what it's like to live with their disease and then offer up a heartfelt response. We don't EVER like to feel as though we are burdening those around us, hence the smiles--that are fake--and the "I'm fines"--that are dishonest--but we do anyhow. Every time we have to be taken to the doctor, to urgent care, to the ER, or ask for help, we feel as though we are a burden. Every time we have to tell a friend we made another emergency room visit and the response is "again?!" it's a hit to the heart.

When the Bed Bug Doesn't Bite

I was raised not to hate, but I HATE insomnia with a passion! It's an inanimate not-even-an-object, so I'm allowed to hate it, right? I think so. It really stinks being awake at all hours of the night—in this case it's 11:40pm, early for some—not knowing whether or not you'll be able to fall asleep. The illusive sleep could be for various reasons:

1. a mind that won't shut off
2. medication (new, old, or wrong)
3. pain (otherwise known as painsomnia)
4. too much sleep during the day
5. too much activity during the day
6. [enter your own reason here]

There are SO many methods one can try to help themselves slip away into Sleepytime Never Neverland

1. Prayer (I'm a big supporter of this)
2. Music (I also support this one)
3. White noise (I use this as well...floor fan AND ambient sound maker)
4. 
   Count sheep (I prefer to imagine sheep jumping over a fence) 
5. Think happy thoughts
6. [Enter your own method here]

What do you do if you just CANNOT get yourself to sleep? Obviously I am finding myself in that conundrum right now as I am typing this little ditty in—what is for me—the middle of the night. You make the best out of the situation! If nothing else, through my life with Gastroparesis, I have found that you just have to make the best out of everything or else you'll go bonkers and—if you knew me AT ALL—I'm bonkers anyway! So, after having knocked back some Gaviscon for my heartburn and a little something for the nausea, here are some suggestions on how to entertain yourself QUIETLY in the middle of the night::

1. Read your Bible
2. Reread your favorite book series
3. Start reading a new book (I started reading Unbroken)
4. Start a blog (I know it's a little bit obvious, but I had to say it)
5. Write in a diary/journal/smash book
6. Color in a coloring book
7. Listen to music on your iPod (discman's are passe, right?)
8. Write a snailmail letter to a friend (you might surprise someone!)
9. Entertain yourself on Pinterest
10. Entertain yourself on Instagram
11. Create an Awareness Page on Facebook (I'm semi-considering doing this myself)
12. Make a To-Do List
13. Go through the photos on your phone and delete old ones that you don't like
14. Check your emails and reply to them
15. Watch videos on YouTube (through earphones, of course)

Naturally, there is SO much more that you can do, those are just 15 examples to get you started! Insomnia really is the pits, but sometimes it causes the creative juices to flow so you just have to take the good with the bad and make it shine!

The Spoon Theory....No The Knife Differential Is Not Coming Later

[Please click on the highlighted "Spoon Theory" and read it in it's entirety to completely understand it]

Recently I was introduced to The Spoon Theory. It's a very interesting Theory and those who can relate to it call themselves Spoonies. Personally, I can relate to it in that, I have to think "how tired will [insert activity here] make me?" "If I do [insert activity here] will I be able to [insert a different activity here] later?" and so on and so forth. That's something, I think, people who do not have an illness of any kind, stop and think about. Showers, cooking, eating, getting up and down out of chairs is exhausting--but it's a fact of life. It's something that's shaped and molded me into the person that I am today and, while I am tired, in a way, I think I am a stronger person for it.

I grew up an athlete and dancer. I started dancing when I was two, doing tap and ballet at the YMCA--so use your imagination about how good I was. And then I moved over to Freddie Finn Dance Studio. When I was 8 years old I started playing softball and soccer, two sports I played well into my teenage years. Softball, though, was something I excelled at; however, dancing is what I miss. Some time in middle school I did BMX bicycle racing...for about five minutes. I've done it all. So, I like to do things. I like to hike, I like to 4x4, I like to swim, but with Gastroparesis...mmm...I have to be calculating. I've done Zumba as a Gastroparesis patient--shook my groove-thing like every other lady in that dance room, but then it became too much...a spoon, you see. I used to go walking around the block--a COUNTRY bloc--in my neighborhood, but then it became too much...a spoon, you see.

I'm stubborn though, there are just some things that I will not give up even though they tire me out--interpreting for the Deaf, going to the park with friends and family, camping, hiking, exploring, working, playing. There are some parts of me that I am just not willing to give up. It'll cost me sleep. It'll cost me what little food I eat. It'll mean some physical pain. But it meant that I got to do fun stuff and I life doing fun stuff...I'm actually quite insane--at least in my own mind!

There really are people out there who have to be more frugal about their activities and I get that--I'm a lucky one. Please continue to have fun with me! I still like to laugh. I still like to goof off. I'm still Christine who will poke fun at you if you do something silly, trust me, I just get a little tired every once and a while. 

 

Metamorphosis...It's an Inevitable Change

Life, in general, lends itself to different kinds of experiences. Some of them are amazing and some of them...not so much. In living with Gastroparesis for nearly 6 years I have had some absolutely horrible experiences—Countless trips to urgent care, hospital stays, IV sticks, blood draws, 24/7 365 days nausea, copious amounts of medications, side effects of said medications, pill tests (swallowing pills that BLINK), MRIs, CAT Scans, physical therapy for vertigo (interesting, but not fun), lost friends, missed opportunities, missed plans, worried parents. Oh, and the vomiting, can't forget that. These are experiences that I wouldn't wish on my worst enemy—if I had one.

But I have also had some of the most AMAZING opportunities along the way and they FAR outweigh the unpleasant ones. I've gotten to interpret for the Deaf at Angel's Stadium twice, go to a taping of The Ellen DeGeneres Show, go camping in the Big Bear Mountains twice, go 4x4ing in Big Bear and Death Valley, go hiking several times, do science experiments, go cosmic bowling, make friends, have parties, and SO much more. These are experiences that I will NEVER forget and, though I may not have been feeling top notch during any one of those given activities, they are mine to cherish because I didn't allow my disease to take it away from me.

The question still lingers though: has Gastroparesis entering my life changed me? The answer is simple...No...Yes. Deep down inside, I am the same sarcastic, goofy, happy, silly—I'm flattering myself here—person that I have always been. If you set yourself up to have something sarcastic said to you, rest assured, I will not hesitate to fling a sarcastic remark right at you—and I don't even have to know you! I have always been a good listener, willing to take the time to stop whatever I'm doing and help a friend in their time of need, to lend advice if it's wanted.

But, by the same token, Gastroparesis has changed me in that I probably talk about barf a little bit more than a proper lady should and how bloated I am after eating so very little and how that is ENTIRELY too much food on my plate (I can barely manage a few crackers anymore). Mentally, I think about where all of the bathrooms are between Point A and Point B, but rest assured, I am not above throwing up in an alley or on the side of the street! I have to daily decide the simplest of things...should I make my protein shake or just drink a ready-made one? Should I carry medication with me today or will I be fine? Is that enough water or do I want to deal with carrying more? I also didn't have to stop and think “should I take a Zofran (an anti-nausea/anti-emetic medication) before I eat or will I be alright this meal?”These are things that, prior to 2010, I never gave a second thought to!

Gastroparesis has changed me. But I am still the same.

The Beginning of My Journey

My name is Christine and February/March 2010 is when my life changed forever. That is when I first became ill with a mysterious illness that took doctors until September of that year to (more or less) figure out what it was--Gastroparesis. Of course I didn't necessarily care WHAT it was, I just wanted it to STOP!! Little did I know that it (most likely) never would. Let me explain:

In medical jargon Gastroparesis is defined as: a condition in which the muscles in your stomach don't function normally.Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and cause problems with blood sugar levels and nutrition.

In easier to understand terms: when I eat food, it sits there and makes me feel sick to my stomach because it can't be mashed up properly, so it takes the path of least resistance...UP! Other times, I'm just plane not hungry. A simple sip of water makes me full.

Whichever definition works for you, that (and, really SO much more) makes up Gastroparesis, Because of the challenges of eating and keeping food down, a person with Gastroparesis tends to run into nutritional status issues. I, luckily never have. Dehydration is another possible problem one can face when living with Gastroparesis. I struggled A LOT with that at the beginning, making 2-3 trips a week to urgent care to be hooked up to an IV. Luckily I haven't had to do that in 3 1/2 years!

Early on I had botox injected into my stomach to relax the pylorus, but that only ended up making me sicker! (See, ladies, botox isn't all it's cracked up to be!) I tried a slew of medications over the next couple of years. Some designed to help motility (food to move through the gastric system) along with ones to help me stop vomiting...none of them worked. Some of them even came with some not-so-friendly side effects, so those got pitched pretty quick, let me tell you! Finally, after a year of dealing with this (as well as sudden onset migraines and vertigo [vertigo for a year straight!]), I just put my foot down and said "I am going to conquer this! I am LIVING with Gastroparesis, not suffering from it! I will be fine!" and decided that I would be able to drive and work again. It took a couple of months, but I made it. It wasn't until April of 2011 that I was able to drive and work again, but I did it!

Am I cured, now that I have decided to start this blog 3 years later?! Absolutely not! I have hit some major snags in this road called Gastroparesis, but you know what? I live my life the best way that I know how. I have a new best buddy--Alfred--that I'll tell you about soon and what that's like. And you know, if Gastroparesis is new to you or old to you....Keep fighting! Keep living! All of our experiences are different, but a lot of them are the same too! We're fighting the same fight against a disease that doctors know SO little about and we've got to stick together! God, family, friends, and a good sense of humor has helped me through this. If you need a friend, I'm here, just leave me a note!

For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.-Jeremiah 29:11