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. 

The Article I Wish I Had Read When First Diagnosed With Gastroparesis

Like any person newly diagnosed with a disease, back in 2010 I instantly headed to the computer looking for answers. What I was met with was a lot of clinical and sterilized papers written by the world of academia. I found them to be cold and written with no thought of the patient who might be seeking out, not only answers specific to what Gastroparesis is, but what life is going to be like living with it. 

The article I WOULD like to have read would have gone something like this:

Gastroparesis, also known as delayed gastric emptying, is not an easy disease to live with. Every waking, and sometimes sleeping, moment the patient is going to feel the WORST kind of nausea they have felt in their entire life and it will never really and truly go away. Doctors will give them anti-nausea medications (zofran and phenergan), but their assistance is so short lived that the Gastroparetic patient often wonders why they were even given it in the first place.

The newly diagnosed patient needs to keep in mind that, though doctors have gone through extensive training, they're not the Fount of Knowledge. The patient will come to realize that doctors don't know everything, particularly when it comes to Gastroparesis, and they will encounter many frustrations when it comes to their physicians. Advocacy for themselves, research of the disease, and asking for second or third or fourth opinions will help in finding the Gastroparetic patient the help they need. 

Most, but not all, Gastroparesis patients vomit everything or nearly-everything up that they eat. This causes the Gastroparetic individual to suffer from periods of dehydration, malnourishment, and exhaustion. The Gastroparesis sufferer also experiences early satiety, the feeling of fullness after just a few bites of food. They may go out to lunch or dinner with their  friends and family and watch as they scarf down heaping piles of food as they push food around on their plate--or in a bowl--because they're already full three bites into the dish. 

Unfortunately there's a great deal of pain associated with Gastroparesis. It often feels as though there's an elephant sitting squarely on the patient's belly and they can't get it to move. Then there's the frequent trapped gas bubbles that makes one feel as though they're having a heart attack. They need to rest assured that they are not, it's just gas stuck in their GI track. 

Gastroparesis sufferers struggle a lot in their private lives because of the general nature of the illness. Friends and family do not understand what a Gastroparetic goes through on a daily basis just to survive, the unbearable fatigue that accompanies it, and the inevitable secondary disease(s)--it's sad, but true--that eventually pop up. The loss of friendships and family members is unavoidable in most circumstances and the patient feels left to fight this battle alone or to seek out others that are fighting the same one. 

In the end, whether friendships are lost or gained, whether doctors understand or not, the Gastroparesis patient needs to learn to become their own best advocate. From this battle, the patient will learn that they are stronger then they ever thought and will find within themselves a warrior that they never knew that they possessed. 

Being armed with information about what life with Gastroparesis will be like realistically would have been far more beneficial than clinical, textbook facts. Realizing that doctors aren't as knowledgeable about things as one thinks is one more weapon in a patient's arsenal. Preparedness in every manner possible will help someone navigate the tumultuous waters of Gastroparesis. 

Surgery Update--Bye, Alfred!

Today, March 31, 2016 I had my gastric neurostimulator removed. I affectionate a named him Alfred after the butler in Batman figuring he would be my right hand man. Instead, Alfred didn't really help me at all. 

Alfred was placed August 2014 in the hopes of blocking the signal of nausea to my brain which, in turn, would cause less vomiting, which in turn would help me eat more. It didn't. I went into surgery weight around 177lbs. By the time I was entering my most recent crisis on March 1, 2016 I had dropped to 165lbs. Today before surgery began to removed Alfred, I had dropped to 155lbs. Clearly my right hand man had fallen asleep on the job. 

It's always a difficult discion to have a device implanted in you--it's a foreign object, hello!--but it's just as difficult to decide to remove it, even when it hasn't helped you in well over a year. The reason for this is that you feel like a failure. 

You've failed Reglan

You've failed Domperidone. 

Linzess isn't exactly working right either. 

And now you've failed the gastric neurostimulator. 

Internally you know you have ZERO control over it, but it's a blow to the ego, the psyche, your morale. You just want your life back, to work, to have a hamburger...but now you just don't know what to do. 

I know that I just need to keep pressing on. Trusting the process and doing my part by consuming what nutrition I can handle at this point to keep my body running. It's not easy...! But I know that's what I have to do. 

Boost is disgusting and the Boost Breezes are SOOO sickeningly sweet they're hard to drink. Ensure Clear are good, so I try and drink those. But Instant Breakfast in the bottle have a higher vitamin and protein count than Boost or Ensure, so I've been drinking that more. I recommend Ensure Clear and Instant Breatast in the bottle, they taste good. 

I hope that NOBODY has to go through this kind of nonsense. It's not easy and it's not fun. But for those that do, I'm here for you and we all have each other. 

My March Madness

Spending ten days in the hospital is rough...on anyone. You get ZERO sleep because taking your vitals at 12am is of great importance, for some reason. And drawing blood at the crack of dawn is of great importance too. Not to mention the beeping, the buzzing, the patients screaming, and the random medications that get administered at all hours of the day and night. I lucked out in that I got an isolation room, so it was pretty air tight and quiet...mostly. Still not much sleep though. 

I landed in there because my Gastroparesis--and apparently IBS--were out of control. I had been vomiting for 16 DAYS straight and I just could not keep anything...ANYTHING...down. Initially I was in there "for observation" but then it turned in to something so much more. 

The Internal Medicine doctor that saw me that first morning (I was admitted at 12:30 am on Wednesday March 2nd) admitted that he knew nothing of my condition and would defer to GI that would see me later in the day, but he thought I would be going home. I had not eaten the food brought to me that morning, didn't eat that afternoon, and by evening didn't eat either. When GI came, he thought I needed an NG tube and wanted to do tests for auto immune diseases. 

The next morning I turned away food and was visited again by the same Internal Med doctor who thought the NG tube would not help, but said "but your condition is above my scope of knowledge." My thought...then don't give me your opinion on it. A couple of hours later the NG tube was placed. It took three tries to get it in. The first try resulted in a big wad of it coming out of my mouth. The second try resulted in it just hitting the back of my nose. The third try was a success. 

It was slow going at first, but eventually it began sucking stuff from my stomach. It's an odd feeling, to be honest, but the relief you get from it is better. The nurse I had said that the amount of stuff coming out wasn't the problem, but the color. It was an off-putting hue--I'll leave it at that. 

Fast forward a day and a new GI came in and he looked at new x-rays that had been taken of my belly. Potassium pills were just sitting in my stomach like two BFFs. He said I was "FOS" and had a big gas pocket in my stomach. Based on that and my other issues (POTS, migraines, peripheral neuropathy, vertigo) he thought I was having a complete neurological breakdown and needed to have TPN and go to UCLA for better help. 

The next morning I woke up, my nose leaking puss. I buzzed my favorite nurse, Lesly and said "Uh, I think we have a problem!" 

She goes "Oh. My. Gosh!" Runs and pages the doctor over and over. I was having a severe allergic reaction to the bandage holding the NG tube in. By the time he finally came we had to take it off because it was peeling off from puss leakage. 

The doctor decided to put me on iv Benadryl and ointment on my nose due to the reaction. And NO MORE TAPE!! 

About an hour later the CNA comes to take my vitals and it hurt. I look down and my left elbow is swollen. Two days before they had started another IV in my right arm because my left arm was swelling; however, the vein was too small so they kept the left arm open for medications like phenergan and potassium. Seemed like the vein was going, so I called Lesly. Again she says "Oh. My. Gosh!" And takes out the IV. 

Finally they decided to put a PICC (Peripherally Inserted Central Cathiter) line in and give me TPN. When you're on TPN you can't have anything other than ice chips and sips of water, so I was on the yellow bag and ice diet for 4-5 days. 

Then along came the THIRD GI and she thought this whole episode was IBS gone wrong. I had to have GoLitely pushed down my NG tube to clean out my bowels. I will say this:: if you HAVE to have that devil drink, having it through the NG tube it the way to do it. But I spent the evening and night shivering, crying, and in pain. She also gave me some shot that was supposed to make my bowels move--it didn't--and then she decided to try and get me to eat, so it was Apple juice down the NG and then Boost--that was HORRIBLE. But I ultimately was able to get the NG out, food down, the PICC out and then home. 

The directions I got going home were to consume 3-4 Ensure or Boost because it would put me close to 1,000 calories a day. If I could get in some soup too, great. I've been struggling to get in much of anything more than 1-2 Boost or Ensure and a little soup. I've lost more weight (I went into the hospital weighing 165 and now weigh 159) and have trouble with nearly passing out. But I'm trying to stay positive. 

My referral to UCLA went through, but I won't be seen until November. We're hoping that they'll get me in sooner due to the complexity of my condition, but who knows. I'm sure that's how most people feel about their conditions. On the upside, my nose is normal again!

(The progression of my nose. Top left is bandage on [duh]. Top right is when I realized I was reacting to it. Middle left is right after getting the bandage off. Middle right is a couple of days later. Bottom left is 3 days before I went home. Bottom right is the day I went home.)

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. 

Make Valentine's Day Green

Valentine's Day is normally all dressed up in PINK hearts and RED kisses for those in your life that you love. You go to the store and buy a sweet card and some pretty RED roses and maybe get some yummy chocolates and then head out to dinner. But what about the person who can't exactly participate in a normal meal? What if that person is restricted by the confines of Gastroparesis?

Maybe this year you can do something special and make Valentine's Day GREEN!!

Green is one of the awareness colors--if not the color--for Gastroparesis and by changing everything that is typically red and pink about Valentine's Day for the person that has Gastroparesis in your life, you are showing them support. And that is SO much more meaningful than a box of chocolates--but maybe not as yummy (haha)! 

I would like to challenge everyone to wear something GREEN on Valentine's Day. It doesn't have to be an entire outfit--don't want to look like Kermit the Frog--but a shirt, sweater, or a scarf and then make a sign that says something to the effect of::

I hope that as many people in as many countries as possible will take part in this movement. As a person battling this disease, we NEED to find a cure...NOW. 

So I've Been Diagnosed With Fibromyalgia

I went to the doctor this morning--an early Christmas present to myself--because I've been experiencing the worst joint and muscle pains known to man. There have been mornings where I didn't know if I would be able to get out of bed. Every possible joint in my body, including the itty-bitty ones in my toes and fingers hurt.  It's quite flabbergasting. 

This past weekend was the last straw. 

I had a photoshoot with my dog at a nearby train museum and I had a hard time keeping up. By the end of the afternoon I had such a hard time coping with the pain that I wanted to cry. But that's life sometimes, right?

Not with this pain. It feels like someone is SHOVING their thumbs into my joint sockets and twisting. It feels like an elephant is standing on my femur. It feels like my blood has been replaced with lava from a volcano. It feels like my hands and feet are on fire. It's inhumane. 

The doctor diagnosed me as having fibromyalgia this morning. Yay, one more diagnosis. One more incurable disease. One more disease whose only treatment are pills that I cannot really take because of my gastroparesis. 

Being chronically ill...it sucks. Really badly. 

Now, with this new diagnosis of fibromyalgia I hurt, all of the time, which sucks because I am a touchy feely person. I love to hug people. I love getting hugs. But it hurts. I don't want people to stop and I don't want to stop hugging people. 

The chronic illness life...it changes you.