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!

Gastroparesis, Zofran, and Me!

Life with Gastroparesis means a life spent feeling like you've got the stomah flu...or are on a wicked rollercoaster (except it's not that fun)...or have motion sickness...pick your poison. At any rate, you constantly feel like you're going to throw up. Constantly feel nauseous. You try and find ways to curb said feeling in any manner possible, whether it's laying down, sitting up, standing up, passing out, avoiding life, overdoing life, or finding a medicine that will HOPEFULLY help...even a little. 

Enter in Zofran. 

Ondansetron (INN), originally marketed under the brand name Zofran, is a serotonin 5-HT₃ receptor antagonist used to prevent nausea and vomiting caused by cancer chemotherapy, radiation therapy, and surgery. (That's Wikipedia's definition of Zofran). My definition of it is, it sometimes helps me not throw up as much. Pretty simple, right? 

There are times when I only have to take one tablet--sublingually (beneath my tongue)--and I'm fine within a half an hour to an hour. There are other times, however, when Zofran just does not want to work with me or the Gastroparesis flare is so strong and it doesn't work. That is when me and the couch become one. 

Another anti-emetic that works for me is phenergan. The only draw back--for me--is that is makes me WAY sleepy. So I save phenergan for times when I am at home and just cannot take it anymore. It is also in tablet form, small, and easy to swallow. I've found this, personally, to be the stronger of the two (phenergan and Zofran), but because it makes me sleepy--VERY sleepy, I only take it when I'm doing really poorly. 

One nonmedicinal option for nausea is ginger. I've used ginger tea and candied ginger as alternatives to medicine. Over the years--okay, it's only been 5, but sometimes it feels like an eternity--I've pumped A LOT of medicine into my body, so finding an alternative to medication is a good thing. Ginger works fairly well and puts a little pep in your breath! 

Alfred Lost A Little Of His Pep!!

Alfred and I have been together (tomorrow) for three months. Alfred being my gastric neurostimulator. The big hope is that he'll block the signal to my brain that I'm nauseous, which will then (hopefully) make me not throw up as much. Well, nothing is a perfect science, right?

I went to see my surgeon (and his intern) on Friday (November 14) because I'd been having returning symptoms...severe nausea...vomiting up almost everything. So my surgeon (and his intern) put this little gizmo on my tummy over the top of Alfred attached to how whizbang machine. As it turned out some of the settings had dropped all on their own! They prattled off numbers--it's all Greek to me--and setting calculations to each other and jotted stuff down. With a few pushes of the buttons on the whizbang machine, my surgeon (and his intern) put me up a step. 

Hopefully Alfred won't continue losing his pep. This is just proof positive that science is not perfect. It's also proof that things take time with this dreaded disease called gastroparesis. I've been told that it can take a year to a year and a half to (hopefully) get Alfred to where he needs to be. If he turns out to be a dud...who knows what the future holds for me. 

Even with Alfred's aid I struggle to maintain my weight (I never thought I would be happy about GAINING weight in my life!), struggle to eat, and struggle to stay hydrated (I have no idea what my labs are). But you know what? I am alive! And I am a fighter!

So, You've Been To See A Lot Of Doctors

Friday (November 14) I had a couple of doctor's appointments, one of which was to be seen by a cardiologist for the first time. When you've been feeling dizzy, faint, having fluctuating blood pressure, a racing heart, and chest pain you kind of want to get it checked out. Naturally, they checked my vitals and weight like and good doctor's office would. My vitals, while sitting, was 94/58 with a heart rate of 70. Now, these are considered normal vitals, but on the lower end. I do not run marathons here, people! I can barely do palates in my living room!

Anyway, it was off to sit in a room...

When the doctor came in, her opening line was, "So, you've been seeing a lot of doctors."  Instantly that put me, as the patient, on the defensive. It is not my fault that my general practitioner passed me to my neurologist who then passed me to my ENT who then passed me BACK to my general practioner who then passed me to the cardiologist. If I had a magic wand, machine, or potion that could show them what was going on, I would us it, but those such things do not exist, so I get to play the game of Doctor Roullete and hope for the best!

After giving her a quick run down of my history, about how I suddenly got sick out of the blue in 2010...blahblahblah...then told her about how my blood pressure an go from something like 94/58 at one appointment to 120/65 at the next within 20 minutes (all within "normal" range, but there's a fluctuation)...how when I stand up sometimes I feel like I'm going to faint...how I have "blackout vision" accompanying these near fainting spells...how I have had episodes of a racing heartbeat...how I'm ALWAYS a cold. 

Her attitude and demeanor changed...

Right there in the office I was given an Ecocadiogram (EKG), hooked up from stem to stern with wires as they monitored my heart:: it was normal. She ordered me to wear a heart monitor for two weeks starting the day before Thanksgiving (Happy Thanksgiving To Me!) in the hopes of catching one of these episodes (which she should) on the cardiac monitor. She also referred me to go to Kaiser Sunset to have the tilt table test done to see how my body responds to the change in position (that should be interesting!)

She asked if I had any questions or concerns and I told her that I feel like doctors think I'm a hypochondriac and that I've voiced that concern a number of times. She said that I've got legit things going on, so not to worry. I inquired about the possibility of this craziness being Postural Orthostatic Tachycardia Syndrome (POTS) and she said that it's quite possible considering what I was describing. I have gastroparesis, peripheral neuropathy, and migraines which points to possible dysautonomia/POTS. So, after the testing, we'll see what the outcome is. 

It's just interesting to me that, coming into the appointment the doctor might have assumed I was doctor hopping or something. Using words like "so, you've been seeing a lot of doctors" doesn't really make a patient feel like you're going to believe what they have to say. I think, however, that after she listened to me, saw my history, saw my blood pressure for the day, felt how cold I am, and heard my family history (BAD heart problems) her perspective was changed.

Doctors need to be mindful of their word choices regardless of who they're dealing with. In this case it was someone with chronic illnesses. But words can hurt. Even something as simple as "So, you e been to see a lot of doctors."

Red Band Society--My Perspective

Fox's new show Red Band Society tries to show what life is like in the hospital, what it's like to be chronically ill. It follows the exploits of Leo, Jordi, Kara, Emma, Dash and Charlie all of whom suffer from illnesses ranging from cancer to cystic fibrosis to an eating disorder and everything in between. These kids get to dress in their own clothes, come and go from the hospital as they please, smoke pot, get drunk, trade drugs with each other, and decorate their rooms as if they were at home. If there's a hospital out there that allows this to happen, tell me where it is!!

Life in the hospital is anything but fun. Anything but full of friendship and comradery. When you're in the hospital, you're generally too sick to entertain the thought of busting out and attending your homecoming, as the character Kara did. When you're in the hospital, you're looking at the clock waiting for your next dose of pain and nausea medications, not going out to the local dope dealer like Dash and Leo. It's often an IV pole that following you around the halls of the hospital, not a gaggle of boys because they think you're pretty like Emma. 

I've been lucky, my times spent in the ER and hospital have been few and short. I can say, though, that I was not living a life in there ANYTHING like that depicted in Red Band Society. Your attire consists of backless, shapeless gowns, no undies, and blue socks...no glamorous clothes, make-up, or hair. Your bed is uncomfortable and has standard issue blankets, nothing luxurious. No window seats with posh pillows. The food is lousy and is, generally, whatever they want to bring to you. The only decore in the room are the cards and flowers that fit on your TINY bedside table. There are no such things as decals on your window declaring your room "The Swamp" like Leo and Jordi's room. Shoot, your room could be changed at any moment!

One has to give Red Band Society a nod for trying and putting a spotlight on hospital life and chronic illness, but it's not real life, not even close. A cystic fibrosis patient wouldn't smoke pot or anything else, it would knock them off of the transplant list. It did tyke fictional Lara who was waiting for a heart. Nurses don't get to pick and chose whether they answer a patient's call, no matter how annoying they might be. And a doctor wouldn't sleep with a patient's mother. Oh. My. Word! 

Life as a chronically ill person is not fun. Your friends tend to disappear--that they got right, medical staff is curt and abrasive, your hospital stays are painful and lonely, and it seems like the cycle is never going to end. All you want to do it be better and to be normal and then you come to realize, for better or for worse, that you're probably not going to so you learn to cope. You either cope with a sense of humor, with a sense of spreading awareness, or bitterness, it's all up to you. 

But, honestly, Red Band Society got it all wrong. 

Gastroparesis And Maintaining Your Identity

When you've been diagnosed with an illness like Gastroparesis that alters your life so drastically and that you know will never go away, it's hard for it to not become all-consuming. It's hard for it to not become your whole identity and invade every part of your life. But, you know what? My name is not Gastroparesis Christine. That is not the name on my birth certificate. That is not my identity...completely. 

My name is Christine and I am a Christian, therefore my identity is in Christ. I am a daughter of the One true King. I am Christine, daughter of Terry and Mary. I am Christine, sister of Dustin. I am Christine, a friend to many (I hope!). I am Christine, a volunteer, an interpreter, an organizer, timekeeper, and aid. But I am also Christine who has Gastroparesis, chronic migraines, IBS, neuropathy, and vertigo. Because they effect me so much, they do play a large part in who I am. I advocate for my disease because there is so little known about it. But my name is still not Gastroparesis Christine. 

There are so many things that define me as a person with a chronic illness. It, admittedly, is hard to separate myself from that illness, but it takes a conscious effort on my part to remind myself of all the other facets of who I am as a person. Yes, I have lost the ability to do many things due to illness, but there are parts of me that is hasn't taken away and I will NOT let it take away! My humor will always be mine. My joy and love for helping others. My love for listening and wanting to help solve problems, that will never change. 

While I will probably be That Girl That Doesn't Eat Very Much or That Girl That Spontaneously Barfs or That Girl With the Metal Thing In Her Gut until the day that I die, I hope that I'm remembered more for my loving and caring nature. My spunk and sarcasm. My winning taste in fashion (that was sarcasm). But, mostly, for being a good Christian witness during a difficult time. 

A Nation Divided Over A Decision

There has been much talk, discussion, opinion, and controversy in regards to Brittany Maynard and her decision to end her life with Oregon's Death With Dignity Law because she had a terminal brain tumor. I do not know what it's like to have cancer, let alone a brain tumor, so I cannot speak or even fathom what it's like to be in that position. I can, however, speak on having a chronic illness that takes away your life, your dignity (at times), your dreams, and so much more. Gastroparesis leaves so many uncertainties in life...will this "meal" stay down?...will I even be able to eat today?...Is this the day I vomit so much I end up in the hospital?...Will they ever find a cure?...A treatment?...Is my gastric Neurostimulator going to work?...When will this/Is this going to kill me?

My understanding of Brittany Maynard's decision is that she wanted to choose when she died and she wanted it to be with dignity. While I can empathize with this sentiment, one truly needs to stop and think about what the Lord has mapped out for us. "Man's days are determined; You (God) have decreed the number of his months and have set limits he cannot exceed." (Job 14:5) God has the number of our days predetermined and by deciding that we want to end it before that predetermined time is to mess with His plan for us. Can we not see that a change, a miracle, a blessing could happen in the time between when someone decides to end their own life and when He has already decided to take someone? 

I recently watched an interview with a British actor who was in the Harry Potter movies and he talked about how he was supposed to have died 18 years ago from leukemia. Did you catch that? SUPPOSED to have died! If he had partken in something like the Death With Dignity Law or something along those lines, we would have missed out on all of the great works he's done in the last 18 years! Not to mention the 18 years he's gotten to spend with his family! 

Gastroparesis is not Cancer and I'm not going to pretend that it is. Gastroparesis is, however, unpredictable--one day you're fine and happy, the next you're sick and in bed; undignified--I  can hash and rehash how I've vomited on the side of the road, in allies, in buckets, and various public restrooms of ALL kinds; life altering--I can no longer eat most vegetables, fruits, go out late with friends because I am too tired;  and often terminal. There are very few treatments and no cure. Most of what is offered to someone with Gastroparesis is to manage symptoms or a "humane device". There is no propriety when it comes to Gastroparesis. I do not know what the future holds for me...malnutrition...dehydration...starvation...I don't know, but I'm sure it's not going to be pleasant. But I'm leaving it up to God. He holds my future. There is time for a miracle. There is time for me to bless those around me. There is time for me to make a difference. 

I'm not judging Brittany Maynard. We live in a free county to do as we please. I am not besmirching her name or trying to cause her family grief, I pray they find peace. I just pray that people who are fighting a similar battle as Brittany or myself will continue to fight. Nobody wants Cancer at 9...29...69. Cancer stinks! So does Gastroparesis! So fight on GPsisters! Fight on!