The Beauty of Spoonie Friends

Friendship is very important for people throughout life. You learn to share, to grow, to love, to laugh, and to have adventure with friends differently than you do with your family. Your friends help cultivate in you a side of yourself that your parents and your siblings aren't able to. Maybe it's because family is always there. Maybe it's because they have those same traits as you. Whatever the case may be, friends bring out a different side of you than family does. 

The same can be said for Spoonie Friends. These are beautiful, special, and unique friendships that bring out a different side of you. That speak to a part of your life that not everyone understands. It's a friendship built on shared experiences and pain. But it's one that you would not give up for the world. 

I have been lucky enough to make three good friends recently within the Spoonie Community. They're friendship during the good and the bad times helps keep a smile on my face when all I really want to do is cry. While we may or may not share the same disease(s), we share some of the same experiences:: social stigmas, lost friends/family, lost jobs, feeling of worthlessness, the desire to achieve goals, lack of understanding from medical professionals, and the list goes on. Just by being able to be there for each other via text--they all live all over the U.S--we're able to support each other, make each other laugh, and give each other ideas when we just feel too sick to use common sense. 

Spoonie friends can relate to having tubes shoved down their noses and PICC lines put in their arms and being forced to take handfuls of medications twice a day (or more). It's a friendship founded on a negative subject but, because we're survivors, we're able to turn it into something beautiful. Who else can text someone they've never actually met and talk about throwing up or having bathroom accidents? SPOONIES! Who else can you drunk text (medicated on morphine) at 2am while you're in the hospital and have the text make NO SENSE and have them just say "You're medicated, aren't you?" SPOONIES!

Everyone, whether you're part of the Chronic Illness Community (Spoonie) or not, needs friendship. You need that someone or someones that you KNOW that you can count on to be there, even through text, when you're having a bad day. Im lucky enough to have found three beautiful ladies who understand what I'm going through and are there to support me as much as they can. I hope that all Spoonies can find someone too. 

A Frustrating Subject

The subject I'm about to write about is a hard one because you know that...mmmm...90% of the time people mean well when they suggest supplements, medications, and drinks for you to try when you're chronically ill. They don't stop to think that maybe, just possibly you've tried them before or that they might, just possibly won't work for you. Or even still, that they might be harmful. 

Because, you know, their "uncle's best friend's cousin's neighbor has something VERY similar to what you have [enter product name here] cured them of it right away!"

Since I've gotten sick I have been schlept every product known to man. Essential oils of ALL kinds, creams, powders, magic pink drinks, voodoo doctors, juicers, grinders, gluten free diets, diabetic diets, Gastroparesis diets and I am telling you NONE OF THEM HAS MADE A DIFFERENCE!

I'm not being cynical. I'm not being ungrateful, I'm not being a Debbie Downer. I'm not being untrusting of God, I trust Him COMPLETELY!

But what I AM saying is this...

People with chronic illnesses often do not feel HEARD. When we post about our illness(es), we aren't asking for attention, we are (most of the time) explaining what it's like to be us. If we say that we're having another stint in the hospital or having another round of testing, we don't want your pity, we want your understanding When we post about Awareness Days, we are asking for you to stand behind us and for your support. 

If this post hits home for you AS THE PERSON SCHLEPING ONE OF THE PRODUCTS, please don't be offended. I'm not pointing fingers at any one person. I'm not angry that people do this, I'm just frustrated. Upset that "no thanks" cannot mean "no thanks". If the fact that I decline your product offends you and my "sick person posts" annoy you, then Unfriend me. It's simple. My choices as a chronically ill person do not directly effect you. It's that simple. I cannot spend energy worrying about offending people over my choices. 

I LOVE Christmas!!

Christmas is my favorite time of year. I love the lights, the smells, the music (Oh, Holy Night and Silent Night are my favorite!), the decore, the weather (but Californians DO NOT know how to drive in rain), the spirit of the season, the gift giving...you get the idea. In particular, I like getting together with my family and having that time together. I don't suppose it's any one thing in particular, but the time together as a whole. 

Christmas Eve is ALWAYS spent at church. My mom sings with the choir. My dad helps direct the traffic. And I interpret for the Deaf. Once church is over we usually go to either my aunt's house to enjoy a time of gift exchange and food or to my house where we have friends over to do the same. Either way, it's a time filled with lots of fun, love, and food!

Christmas morning always starts with hot chocolate (with lots of marshmallows) and opening out stockings to see what Santa brought a us (yes, we still do "Santa" and it's fun!)--he usually brings gift cards, a toothbrush, gum, and jewelry. After that gifts are passed out. We go the one-for-each-person...OPEN. Do that process all over again method. It seems only fair and you can see what everyone received. Once the gifts are gone we have breakfast which usually consists of scrambled eggs, biscuits and gravy, and sparkling cider--what's Christmas without sparkling cider?! Then it's off to an aunt's or uncle's to participate in family fun and frivolity!

Much like Thanksgiving, Christmas is a food-centric holiday. I've come to cope with this fact, it's American society. I cannot ask my family or the world to change what it centers it's functions around just because I cannot partake in food the same way that they do. I still like baking (I'm not very good at that) and cooking (I'm pretty good at that) and so that's where I get my food thrills instead. I adapt to my circumstances the best that I can without inconveniencing those around me because that's all that I can really do. 

Christmas isn't TRULY about food. It's not about the decorations or the music or the present.  It's about the little baby that came, that was born in Bethlehem so long ago. That is why Christmas is important. We lose sight of it SO easily in the hustle and bustle of shopping, in the angst of our pain, in the frustration of our circumstances. Don't forget Who came and why He came this season. 

Therefore the Lord himself will give you a sign: The virgin will conceive and give birth to a son, and will call him Immanuel.

Isaiah 7:14

Thanksgiving—How To Cope When You Have to Cope Everyday

It's probably safe to say that Thanksgiving is everyone's favorite holiday because, well, it's the day about everyone's favorite subject:: FOOD! The house is filled with the sounds and smells of FOOD being made, decorations that represent fall and Thanksgiving (which often times is FOOD [think pumpkins, corn-on-the-cob, and various cords]), family chatting and catching up, drinks being had. It's a wonderful time! For some, though, it's a time of anxiety because they are thinking about all of the things on the Thanksgiving table that they cannot eat due to their Gastroparesis.

Gastroparesis does not allow a person to eat most vegetables, fruits, breads, and fats that are found in a Thanksgiving spread. But, not wanting to cause a problem, stand out, or be a burden the person with Gastroparesis will just make due with what is found before them...and then suffer the consequences later. For some people this can be “minor”--early satiety and the inability to enjoy any dessert—to disastrous—severe abdominal pain, nausea, and vomiting. Whatever the case may be, people with Gastroparesis tend to not relish (some do) the holidays any longer due to the food-centricness (Oh! I think I just made a new word!) of it all.

Speaking for myself only, I have learned to adapt without having holiday food anxiety. I pick and chose the food, as wisely as I can, that I can eat. I know that I have to eat in moderation and just KNOW that I will not have a heaping plate of food like my family members and not feel sorry about it. My family does not have to worry about getting hugely bloated afterward, nor do they have to worry about throwing it up a short time later, or feel nauseous, but I do so; therefore I have to do what's right for me in this scenario. Mashed potatoes and I are besties (on any given day, honestly), I splurge on stuffing because I just LOVE it, and I a small piece of turkey. I have all of the essentials (I can't have cranberry sauce, but I don't like it, so problem solved!)

My policy, though, is:: if I am having a flare day, I am having a flare day and I will tell you and I just will not eat. It's not something I can control, it's not something I can predict, and I'm not going to feel guilty about it. I know making a turkey dinner takes a quadrillion hours and I appreciate that, but I'm not going to make myself sicker just to sample your food. My family will love me, tasted turkey dinner or not. There's always Christmas dinner!

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!

Gastroparesis Waits For No Man.

You know that saying "time waits for no man"?--I'm sure that it was someone old that came up with it. Well, Gastroparesis waits for no woman, job, plan, friend...nothing. Gastroparesis is on its own timeline, it's own schedule. It does not care if you just brushed your teeth or just put your make-up on. It does not care if you were only able to "eat" a couple of ounces of your breakfast. It does not care if you are on your way to work or at work. Like I said, Gastroparesis waits for no woman. 

So, what do you do?

Panic?

Cry?

Throw a tantrum?

All of those are viable, plausible options. But let's be adults about this. 

We can't give up.

We can't give in.

So what do we do?!?

I try my best to march on with my routine--with a little case of bloodshot eyes. On the way to work, I treat myself to a nice high calorie Starbucks drink--nice ruse huh?--and try to march on through my day. What happens if the flare continues at work? Inform those I work with what's going on. It's good for people to be informed--slightly awkward for some, but they'll get over it--and good in case an emergency occurs, which hasn't happened yet. 

I also sip on water as much as possible to stay hydrated. Sometimes it helps, sometimes it hinders, but working on the theory that I'm hoping SOMETHING is staying in and helping me, I sip on water....S-L-O-W-L-Y. If I find that it's only making it worse, then I stop. 

If all else fails...Zofran. I always carry Zofran with me so that I can toss one back if need be. Personally, I hold off taking medicines until I just can't take it anymore, but everyone's different. Zofran usually does the trick, but not always. I've noticed since getting Alfred, it seems to work better. Prior to that, I preferred Phenergan; however, that stuff makes me sleepy. 

As always I use humor. 

Laughter. 

Smiles.

Busy myself. 

I'm sure you're thinking "Christine, I feel like roadkill, run over by a Mack truck, stamped on by a horse!" I know! I can relate! 

Here's another saying for you, "kill them with kindness", it applies, no? If I can smile or laugh my way through whatever I'm experiencing at the time--and I realize that staring down the barrel of the toilet bowl is no laughing matter, but I'm a firm believer in finding humor in everything--then I am not allowing my situation, my circumstance to win. If I cry, panic, or throw a tantrum I won't gain anything...except an ulcer and my poor tummy can't handle that!