When It Feels Like Christmas On Supply Delivery Day

Every Wednesday is Supply Delivery Day, it's like a Medical Supply Christmas that comes ones a week for those who live their lives permanently or temporarily attached to some kind of medical device. In my case, I have a PICC line (peripherally inserted central catheter) so that I can receive TPN (total parenteral nutrition) 12 hours a day due to Gastroparesis. 

At first, when all of those supplies showed up at my house along with all of the devices, it was daunting. I felt as though I was sitting in a sea of never ending syringes and alcohol swabs and saline flushes...and I didn't know how to use ANY of them! My mind and my heart felt overwhelmed by the boxes and bags of equipment splayed out around me. "When did my life become an episode of ER?" kept running through my mind. 

But as the tears began to form in my eyes and my heart raced, something deep inside me told me that I had to conquer this like I've conquered so much before it. And as the supplies were organized and my set up became part of my routine, it has all become less discouraging and more a part of my life. And when supplies begin to run low, I find myself looking forward to Supply Delivery Day!

And it's like Christmas or a birthday every week as you open up boxes and bags of supplies; mostly of things you were expecting (TPN, vitamins, alcohol wipes) and things you weren't because you forgot about them (flushes, needles, syringes, stockinettes, batteries, etc.) And, as you rifle through the newly arrived supplies, you realize just how much it feels like Christmas in the middle of June. 

Viewing these weekly deliveries as positive as opposed to added stressors to the Chronically Ill Life, it helps to manage this often intimidating, scary, and exhausting aspect of being ill. 

 

Experiencing An IV Infiltration

Have you ever wanted to know what a water balloon feels like? Yeah, me either...but I got the opportunity to early on the morning of May 19, 2016. 

I found myself in the Emrgency Room at around 9:30pm because my PICC line wouldn't flush. Erring on the side of paranoid, I went in to make sure everything was alright, particularly since I had been experiencing some chest pain. I didn't get called into triage until after midnight where they asked me why I was there, took my vitals, had me tinkle in a cup (my worst nightmare), and did an EKG. I was sent back into the waiting room with promises of being called back soon for blood work. 

Two and a half hours (plus) passed before I was called back and put into a room. 

Did you see that? Two and a half HOURS! 

When I explained to the nurse that I had a PICC that wouldn't flush and torched veins on the top left hand (so don't touch it or the shoe may fly at your head) and the rest of my veins are scarred (so good luck and God bless on finding a vein), so got her handy dandy ultra sound machine. 

And STILL had a hard time finding a vein!

But she was able to get one, on the WAY interior of my elbow. Once in place, labs were drawn and the wait began...again. An hour later the P.A arrived announcing my D-Dimer test to be abnormal (normal range is nothing higher than 499. I was 552). It was declared that I needed a CT with contrast so off I went. 

The tech hooked me up to the infusion "pump" (think sci-fi syringe looking things that bottleneck into tubing that connect to your IV) and watched as the saline shot into my IV...it seemed sketchy, but he had it continue anyway. As it moved into injecting the contrast it does it at a high rate of speed and it warms the whole body. 

Not for me. 

It infiltrated (the contrast and saline shot into my arm tissue) and caused my arm to swell quickly. Because the test was still going, the tech couldn't get the tubing detached very quickly and only could raise my arm as it continued to swell snd fill. 

It hurt SO badly!

The test was aborted and I was taken back to my bed in the ER and they did a chest X-ray. They had me massage out as much excess fluid as possible and then put ice on it. The xrays didn't show a clot (yay) and so we waited for a PICC line nurse to arrive to deal with my PICC line. 

About an hour later he showed up (he had been my night nurse a couple of nights when I had been admitted. Cool dude). He injected my PICC line with stuff called CathFlo and it got me going again. My PICC runs like a country river now (thanks, Daniel)! 

Finally, at about 9am I was discharged and went home. So, if you're keeping track, I was in the ER, basically, 12 HOURS. Initially I was thinking it wasn't going to be worth it, we can just push saline at home until it works, but it turned out to be worth the co-pay to know that a pulmonary embolism was a VERY real possibility for me that night. 

Today (Friday) the swelling has gone down significantly, but my arm is still quite tender and bigger than normal. Being a Human Water Balloon is NO fun, even if it's localized to one body part! You become ACUTELY aware of how much you use your arms for everything and when they're both rendered virtually useless, it stinks.

Be mindful of IV placement (I'm kind of screwed in this department since I have virtually no veins to use) and do your best to preserve the site once it's placed. Let your medical team know ANY time the IV doesn't feel right. You have the right to ask for it to be moved! 

My First Week Home with TPN

Living with a PICC line is everything you would imagine it to be...overwhelming. A lot of supplies are delivered to your house (A LOT), a machine is delivered, the TPN and the vitamins too, information about TPN delivery is explained, nurse visits are explained, phlebotomist visits are explained, how to hook up the TPN is shown to you, and then there's the PICC line itself. 

...it's mind boggling. 

Hooking up the TPN takes roughly ten minutes or so. You need to make sure that you have all of the supplies you need because the very first step is washing your hands with special soap. If you touch anything other than your TPN/PICC supplies, you have to wash again. One night, I had to wash THREE times! Many times I get hot and tired half way through the set up process and either have to sit down or have to ask my mom to take over.  

Sleeping with a two foot tube snaking out of your arm is not easy either. The TPN bag and pump reside in a backpack on the floor beside my bed. I then put the excess tubing on top of my comforter so that I am "free" to turn on to my right side. Even when I am asleep I am thinking about the tubing, trying not to yank it out. We don't want that to happen!

I'm hooked up to TPN for 12 hours straight, so if I hook up at 5:30pm I disconnect at 5:30am. I've put off hooking up until 6:30pm or later so that I can get a little (hopefully) get a little more sleep. 

TPN is NO joke. It's not something you mess with, hope for. But when it's necessary, it's necessary. Unfortunately, for me, it has become necessary and I hope that it helps me. I hope that it helps any person on it. 

Update--May 2016

April Showers did not bring May flowers for me...sadly. I've been in a rough patch lately, as many Chronically Ill people experience. Upon release from the hospital on March 11, 2016 I never really bounced back. The regimen of 3-4 Boost/Ensure a day was too much for me to handle and became less and less as the days passed until it became nearly nothing. And then hospitalization. 

Again. 

Nobody WANTS to be hospitalized, but sometimes you get a feeling that the hospital is the only place you should be. On April 22nd, that's what happened. My General Practioner decided the hospital was best and in I went. Two days in, the NG tube was placed. Two days after that, the PICC line. Clearly my situation was not improving. 

And this would be the strangest hospitalization I've ever had. 

From the time I got sick in 2010 I was given phenergan to help combat nausea and vomiting. It's always helped better than zofran and I've NEVER had trouble with it. This hospital visit, that would all change. Almost from the first time I was given it this hospital visit, I would begin to feel as though I needed to stretch but, no matter how much I stretched or which way I moved, the feeling never left. Then I would get itchy and fidgety. It was making me crazy! So they gave me Benadryl...the feeling left. The next night, it happened again, so they gave me Benadryl again...and Xanax. And the feeling left again. When my PICC line was placed, the dance continued...flush, phenergan, Benadryl, flush....I CANT BREATHE!! I grabbed my nurse so quick!! The rapid response team was called. An oxygen mask was placed. Ativan was pushed (apparently they thought I was having a panic attack or something. I wasn't. I promise you that.) I finally could breathe again. 

I am now listed as ALLERGY:: Phenergan 

To add to the oddity of the stay, though not terribly surprising, my blood pressure never broke 100. My baseline is 92/53. My blood pressure was 84/45, 73/35, and the like while in the hospital. Nobody had any answers for as to WHY my blood pressure was acting this way, so it still remains an unsolved mystery. 

Thankfully, after eleven days, I made it home, albeit with a PICC line and needing to use TPN, but home nonetheless. The veins on my left hand/arm are shot from either IV sticks or potassium and phenergan use, so the poor phlebotomists have their work cut out for them every time they draw blood--which is twice a week at this point. My arm looks like hamburger and feels like it's been run over, but with three heat packs and a few sticks, it MIGHT give a little blood. 

I'm hoping for the best in the coming months. My UCLA visit got moved to June 14th with the colleague of the original Doctor I was referred to see. So hopefully that goes well. I'll keep you posted. I don't know what I'm expecting when I go, but I'm going!

A Reflection On My Gastroparesis Diagnosis

Looking back to 2010, I can't believe that 6 years of my life have already gone by living with, not only Gastroparesis, but getting diagnosed with chronic vertigo and migraines in the same year, peripheral neuropathy in 2013, postural orthostatic tachycardia syndrome at the beginning of 2015 and fibromyalgia at the end. It feels as though any time my feet lead me over the threshold of a doctor's office I'm given yet another diagnosis or, at the very least, the prospect of yet another one coming down the line. 

(April 2010--Doctors still didn't know what was wrong with me)

I was just barely turning 30 years old when I became ill out of the clear blue sky. My life as I knew it, working with learning handicapped children by day  and interpreting for the Deaf by night came to a screeching halt and the couch and my body became one. Nurses, doctors, and specialists didn't know what to make of my triad of symptoms that happened all at once--vertigo, migraines, and vomiting. Try as they might to connect one to the other, they just WEREN'T connected. Test after test brought no answers until, finally, I was given a gastric emptying test...It gave everyone the answer::

Gastroparesis. 

Even though my life had been changed for six months prior to that, it seemed permanently sealed now that I had a name attached to what was going on. 

Gastroparesis. 

There's permanency in knowing what your disease is called. There's no turning back. There's no take backs. There's no do overs. It's only moving forward. But that doesn't mean there's a solution. And there hasn't been for me, it's just been the addition of more conditions that, as best the doctors can tell, are as a result of Gastroparesis. 

(September 2010--I had finally been diagnosed with Gastroparesis but was doing no better in terms of treatment being offered)

It would be easy to slip into Permanent Pity Party mode because of the events of the last 6 years. Trust me, a good cry and whine session happens every once and a while and then I go about my business. But taking up permanent residence in self-pity, self-loathing, or anger at others does not improve the situation. I find that a good sense of humor has helped get me through quite well. 

Luckily, after a time I was able to return to my day job, though no medication or therapy was helping my Gastroparesis. Different solutions have been tried, including the gastric neurostimulator--which recently failed, but I've been able to fight my way back to some kind of normalcy as much as possible each time. 

Hold out hope even when there doesn't feel like there is any. Even when the doctors don't know what to do for you and friends and family don't know what to say. Hold out hope that maybe, just maybe, tomorrow you could turn the corner and it'll be a better day. 

(April 2015-Loving with the gastric neurostimulator for over a year and having been diagnosed with POTS and peripheral neuropathy)

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.