Spoonie Wars...It's Not a Competition!

Everything in life has become a competition. People find a way to one-up each other in just about every facet of life:: I'm smarter than you...I have a better car than you...I can play

that sport better than you...I have more possessions (of some kind) than you. But when it comes to chronic illness(es) and comparing and one-upping each other, that's just...sad. When people with chronic illness(es) are saying:: I have more illnesses than you...worse illnesses than you...worse symptoms than you...worse treatments than you...

That's just horrible.

Often we list our illness(es) in an effort to connect with one another, to share experiences and advice; but in doing this it can become a competition in seeing who has the most illnesses and who has the worst symptoms and who has the worst treatments. Why does being SICK have to be a competition? Somehow it turns into—not always, but sometimes—a contest to see who has the most illnesses (from the most petty to the most severe), to see who has the worst symptoms (when people share the same disease), to

see who's experienced the worst treatments, who's seen the most whackado doctors (though those can be very funny stories), and the list goes on. I am ALL for advocacy, for educating, for comparing stories, but when it comes to people telling me their situation is worse than mine...lets not even go there. We are not here to one-up, to compete, to garner sympathy from those around us (because isn't that what we always say?). We are there to be a Community. And a Community sticks together.

The Chronic Illness Community...The Spoonie Community, needs to be one that sticks together, not one that excludes or becomes divided due to differences. We are bonded in a sisterhood and brotherhood that NONE of us wanted to be in,

but it is one that we are in nonetheless. America is a “melting pot”, so is the Spoonie Community; therefore, we should accept everyone for their variances, their opinions, their experiences without trying to put each other down. We need to remain encouraging, uplifting, and positive for each other. When we see another in our midst who is suffering, offer them love and assistance. Don't try to belittle another person's experiences compared to yours...we're all suffering in our own way.

We're all (roundabout-ly) in this together, so lets stay that way.

Kaiser Sunset and the TILT Table Test

Yesterday was my big trip out to Los Angeles to go to Kaiser Sunset to have the TILT Table test done. We didn't know what to expect, but we were hoping that it would provide some answers as to why I get "blackout vision" when I stand up and feel as though I'm going to pass out quite frequently. My check-in time was 12:45pm, but LA traffic being what it is--horrible and unpredictable--we left the house at 10am, just to be safe.

I was given instructions beforehand not to eat after midnight; no water, no food, no gum chewing, no medicine, NOTHING. So, given the fact that I struggle with eating and water intake anyway due to my Gastroparesis, it was no wonder that my veins were a hot mess when they wanted to start an IV, oh...some twelve hours after I had consumed anything! The nurse kept saying, "do you exercise? Do you drink water?" and slapping my arm. In the end, she found one and I was on the road to getting hooked up to a bunch of wires. 

The doctor came in and asked me questions about myself: what I've been experiencing, what my health is like, what I do for work, if my sibling(s) are healthy, etc. She then explained that they would be looking for a POTS (I'll explain later) response or a more vaso vagal response (the most common type of fainting) and be able to let me know. She then explained what the test would be like:: Phase One- strapped onto the table, I would be tilted up to a standing position and observed. Once symptoms occur, te test would end. Phase Two- I would either take a nitroglycerin tablet or be injected with adrenaline to elicite a response as I'm tilted back up to a standing position. 

Fun. 

Strapped onto the table, with monitors beeping, away we went. It made me dizzy instantly. And then I just stood there...and I got whoozier...and my vision got dimmer...and they're asking you how you're feeling and you're trying to mentally check everything...it's overwhelming...for twenty minutes. And then it was done. And they laid me back down and started the adrenaline infusion. When it began to go into my veins they brought me back up and...

Oh. My. Gosh!

My heart pounded SO fast! I felt so faint and actually started to pass out! The left side of my face felt like it was drooping and my body was tingling. Not fun! I heard the nurse and doctor talking and said they had the infusion going for nine minutes, so they stopped it and let what was inside me run its course. It felt as though my heart pounded forever!! 

When it was all over, the doctor came and spoke to me and my mom. She explained that the testing showed that I do have a mild form of Postural Orthostatic Tachycardia Syndrome (POTS), which I had suspected. She said my heart rate, resting, was 70 and had jumped up to 90 or slightly above. And that my blood pressure, which in a severe POTS patient would REALLY plummet, only dropped about 10-20. At one point I saw my blood pressure during the test and it said 115/53. Before the test even started it was 94/53...I'm a mess.

The suggestion I was given was to avoid caffeine (coffee/tea/etc) and drink more water. I need to avoid standing and sitting for long periods of time and if I have to stand for a long time, to "pump my legs"--like March in place--to pump up my blood. It's nice to have some answers and to know that it's not severe--which I didn't even think it was. Honestly, just having a NAME to it makes so much of a difference!

Feeling Twitchy

Everyone gets twitches in their muscles from time to time. Sometimes they're in the quad muscles...sometimes they're in the calf muscles...sometimes they're in the gluteus maximus muscles (that's your 
tooshie). The most annoying ones are facial twitches because they can be seen by those around you and, let's face it, you just look a bit strange. All twitches, no matter where they are or how long they last or how intense they are, are annoying and become uncomfortable. 

Off and on for the last three weeks I have been getting twitches or spasms in my stomach. Not my abdomen, but the actual organ! It is THE most uncomfortable and awkward feeling in the world! These twitches/spasms are strong enough that I have been woken up from them in the middle of the night!  I live with the disease Gastroparesis and because of the lack of treatments available I now have a gastric neurostimulator implanted and the leads go right into my stomach. I have no clue if the spasms I've been experiencing are due to my neurostimulator or if I just have a gnarly case of GERD.

Im not a Worst Case Scenario Wilma, so I'm treating it as a bad case of GERD at the moment, so myself and Prilosec have become besties. It's just a VERY odd sensation, let me tell you. I can feel my stomach beginning to twitch almost constantly and then when the big spasms happen...it impedes my ability to breathe. It's almost indescribable! 

I'm hoping the Prilosec will help, if not then I'll bring it up to my surgeon. I guess, until then, it's just one more story  in the Strange Things That Happen In Gastroparesisland Saga!

Paint Valentine's Day Green!

Valentine's Day is normally a day where everyone wears pink or red and thinks lovey dovey thoughts. Minds are consumed about what should be bought for that special someone in your life...chocolates...stuffed

animals...cards...diamonds...watches. Other people find the holiday rather loathsome because they don't have a significant other and just get to watch all of the people around them receive gifts from people while they're all alone. Others still just see it as another holiday that has fallen victim to commercialism. Just another way for The Man to get unsuspecting people to spend their money on frivolous items. This year, I suggest turning Valentine's Day on it's ear and doing it all differently...from the color you wear to what you spend your money on to who you think about to what you take pictures of.

Instead of wearing the obligatory pink, purple, or red on Valentine's Day, wear green for someone you know that is living with Gastroparesis...someone like me.

And instead of spending your money on chocolates that a Gastroparetic really shouldn't eat—but a lot of us love—why not donate it to an organization like G-PACT in our name. And those cutesie pictures of hearts and lovey-dovey quotes that get posted on Facebook and Instagram...switch them out with pictures of yourself dressed in green holding up a sign saying “I Wear Green For [Insert Name]” or “Go Green For Gastroparesis”. I'm not asking you to cancel your Valentine's Day, but lets paint it green and make awareness for this rare disease!

There is a hashtag campaign (for a lack of better words) going on through Facebook. When you wear green on Valentine's Day and you post pictures on social media, use the hashtags #StridingSisters and #WearGreen4GP so that the pictures can be tracked. This is all in an effort to create awareness for Gastroparesis, to get the word out there that this disease exists and that it is quite debilitating, but also that there are people out there who care, and that you can LIVE with it too.

Advocacy and awareness becomes a big thing when you end up with a disease like Gastroparesis. Doctors don't quite understand it, your friends definitely don't understand it, and your family tries to understand it; so you have to become your own advocate and educator. And it's not easy. Wearing green on Valentine's Day is an easy way to spread the word. It's also an easy way to tell a friend...Hey, I'm supporting you through your battle.

The Weight-ing Game

Before I became ill with Gastroparesis I weighed 289lbs. I was fat, but I was FAB-U-LOUS! I knew that I needed to lose weight, I figured that my weight issues bothered other people—because MY weight problem is always the problem for ANOTHER person, you know. However, my philosophy on that was: there are 359 other degrees for you to look if my fat behind bothers you! Now that I am living with Gastroparesis, I have to watch my weight for a whole different reason. In just two days I can drop five pounds—some girls are probably cheering for that one—and that is SO not healthy for me (or anyone!).

Due to the symptoms I experience—nausea, vomiting, early satiety, lack of appetite—eating is a struggle for me, thus comes the weight loss. I find myself struggling to eat most days and then there are those rare, but beautiful days, where I want to eat everything I see (and pay for it later). In either case, I have to remind myself to eat KNOWING that I have this disease. Eat knowing that I have to keep my body going. Eat knowing that I can't really drop weight or I'll have doctors “screaming” at me (they don't actually scream, they just politely, yet firmly tell me not to lose any more weight). Eat to keep my blood pressure up. Eat to keep my dwindling energy level going.

So, what does one do? I don't have an honest answer...

I don't know that ANY Gastroparetic can really tell you that there's a right way to eat for this disease. You have to find the way that works for you. This disease is SO complex and SO understudied, we're grappling along with it just as much as the doctors are. One minute you're being told to follow the Diabetic Diet and then the next minute that's being yanked and you're being told to do something else...it's all just so...confusing! And it's scary at times because at every turn you have suggestions and cure-alls and voodoo magic and holistic oils being shoved in your face and it's just overwhelming!

Don't give up..!

I am willing to try and am still looking into things to keep my nutrition going. I think starting out a Chubby Bunny is what has saved me in the long run. I wasn't ashamed then for being fat and I'm not ashamed to look back and know that I was because I think that's what has saved me.

Currently I use Juice Plus as a main source of nutrition—particularly when I am not feeling the best—as well as putting fruit into the NutriBullet and making a smoothie. My doctors hound me about eating “chew food”, so I make sure that I eat “chew food” too, but I don't have that much interest in it, to be completely honest. A lot of the time I only eat to make my parents and friends happy. “Chew Food” (as in solid food) hurts my stomach, so I stick to soft food when I eat it...soups, rice, mashed potatoes, etc.

Don't EVER take food for granted. Don't EVER take your body and its ability to do its natural functions for granted either. I look back on my life pre-Gastroparesis and I just think about how easy I had it, so little worry. Now, it's not that simple. I don't stress myself out about stuff, but I have to be mindful.

...And Then I Ended Up in the Emergency Room...Again

Everyone has to start off the New Year with a bang somehow, I just chose to do it by going to the ER! Yay! The pain that I had been experiencing from the kidney infection from 2 weeks ago had never really gone away and by last night (January 4), I felt like I was dying a miserable death. I hadn't really been eating--not that I ever really do--and what I had managed to consume was just coming right back up. Laying on my left side was torturous and felt like a puss sack or something was pushing toward the midline...graphic, I know. 

When we got home from church yesterday, I tried to take a nap, but it just wasn't happening. I told my mom that I thought I needed to pay the emergency room another visit. In an effort to save $100, we looked to see if I could make an appointment with my primary doctor and there was nothing available. I even looked for something over the next week and a half...nothing. So I bundled up and off we went. 

Luckily, this time, they took me right back and got me going. My vitals were a little high, for me, (125/75 and 79) and put me into a bed. I was put into an area with multiple beds and a security guard--should I have taken that as a hint--and asked to change. I was then asked for a urine sample [insert grumbling and grousing here]. The nurse started an IV and drew a TON of blood, like 8 viles worth, and then the wait was on for the doctor. 

When he came he told me he had looked at my history as far back as 2010 and had seen that I had "some stomach emptying issues" and wanted to know what was going on. I told him about having Gastroparesis and the gastric neurostimulator, that at first I thought that Alfred--my pacemaker--was helping 70% but now I feel I'm eating my words. I think he's only helped an eensie bit. He asked if I've had pain PRIOR to getting Alfred and I said "yes, there's pain associated with Gastroparesis. It's like stomach cramps with the flu ALL the time. This pain that I'm having now is different." He was very receptive and friendly, examined me and found nothing wrong. Based on his exam and past scans and the results of my blood, it turned out not to be my kidneys--yay--so he treated me symptomatically. 

The nurse came and hooked up a bag of fluids, gave me a shot of phenergan--that sucker hurt--and did a piggyback of a pain medication that I can neither spell nor pronounce--it turned out to be the first and only IV Tylenol there is. I was checked up on a while later by the doctor and still in pain, so he gave me morphine and that helped more--definitely made me sleepy--and sent me home. 

By the time I got home I was pretty out of it, but at least feeling a little better--not so nauseous. Hopefully, come Wednesday, my primary doctor will be able to figure out or have an idea as to what is causing that pain. 

It's hard deciding whether or not to go to the ER. On the one hand, you pretty much know that the only thing that's going to happen is fluids, nausea/vomiting meds, and pain medication and you wonder if it's worth spending $100 on that. But on the other hand, you just want the nonsense to stop so $100 doesn't seem like all that much. Oh, the conundrums we face in Gastroparesisland. 

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.