Musings of A Girl In Pain At 1AM

It's 1:30AM here in Southern California and I'm lying in my bed "wide awake" because everything burns and hurts. Every joint. Every muscle. EVERYTHING hurts. My jawbone and teeth ache. My hands burn as if someone is trying to set them on fire. The pain is uncanny! Even my poor little pinky toe...poor little fella! 

I do not, that I know of, have fibromyalgia. Friends have asked if its a possibility and I just say:: No, I'm getting old and I don't eat! Lack of basic nutrition will make you she in places that you didn't know we're possible of even aching--like your hair. 

In the last 3 weeks my Gastroparesis has been at 100%+ and food is a definite enemy. My mantra has been "Food Is Not Your Friend", but of course it is and it's just my cranky stomach telling me otherwise. I LOVE food and I love to eat and cook it, but right now, I want nothing to do with it. It makes me physically ill, I barf it up, we are not friends. Because of this I haven't eaten much more than handfuls of crackers at a time (last night I ate some mac & cheese!) and have lost at least 7 pounds as a result. 

On Wednesday I saw my surgeon, Dr. Marrujo, thinking he would probably turn my gastric neurostimulator Alfred back on, he didn't. He said, because it seems to not really have done much, if anything for me, and I'm doing so poorly now, I am at a crossroads as to what to do next. He suggested seeing a Dr. Lim and trying Domperidone, but I've tried that before and had no success. I was honest and said:: I don't often cry about my situation but I cried last week. Im tired. Im tired of being sick. Im sick of being tired. I just don't want to do this anymore. I don't know if I qualify for getting tunes and I don't know if that's what I'm asking for but I'm just done. He questioned what I meant by "tubes" and I said:: for hydration...for food...for something. I'm just done. I just want to go to sleep and wake up not feeling like this. 

I'm thinking he might have thought I'd lost my marbles there for a minute. 

Anyway, he changed my as-needed pain medicine from Tylenol with Codeine to Norco to see how that goes and had me do blood work and is going to see me in two weeks. In true Spoonie fashion my blood work came back normal--I can see the results online--and here I sit, aching like I've gone 76 rounds with Mike Tyson. 

I KNOW that I'm lucky that I can function as well as I do, but I can feel it slowly disappearing as the days and weeks go by. Maybe what I need is a break from work, which is soon coming. Summer break starts in a week. But, at the same time, I have no idea what I REALLY need--besides a LOT of prayer. It's all so frustrating. It's all very tiring. I just want the pain and the nausea to stop. I want to go to sleep and wake up refreshed in the morning. 

That's not too much to ask for, right?

Coming to Terms With Your New Diagnosis

I've been diagnosed with Gastroparesis for five and a half years now, so it's been a while. I'm not an expert and I'm not licensed in anything, so the advice I give below is just from my own personal experience; however, I think having trotted down this road for some time now, it gives me a margin of "expertise". Along this road I have also been diagnosed with a couple of other diseases or conditions along the way, just to keep life a little extra spicy. Because one disease isn't enough!

So here is my (TOTALLY non-professional) advice on how to cope with being newly diagnose:: 

1. TAKE TIME TO SOAK IT IN

Just take the time you need to take it in, whether it be to shed tears, sleep on it, laugh about, to absorb it, whatever the case may be (everybody is different). Take the time you need to go home with the information and the diagnosis(es) your doctor has given you and sit with it. Ponder what this all means to and for you. Often times you've already been dealing with this disease for months to years, just without a name. Now it's just taking in the fact that you have a name to stick with all of the turmoil you've been experiencing. 

2. RESEARCH IT

After you've absorbed your diagnosis, take any information your doctor has given to you and read it thoroughly. After that, jump onto the Internet and see all that it has to offer...the good, the bad, and the ugly. Life is NOT going to be all peaches and cream with your disease/condition, so why live in a fantasy world, right? 

3. SHARE WITH FAMILY, FRIENDS, AND LOVED ONES

This is a step that is, sometimes, the hardest for newly, and old-ly (did I just make up s word?!) diagnosed to do. Those  who are not sick do not understand Chronic Illness, BUT how will they understand if we do not share what it is our illness is and how effects our lives? 

I, personally, am as honest as I can be with everyone in my life. I tell them about food not staying in, food staying in too long (if you catch my drift), being in pain, wanting to pass out, being tired, dry skin, dying hair, and all of the other parts that go along with my diseases. There's no other way for them to understand what it's like to be in my body if I don't tell them. 

4. FORGIVE YOURSELF

Every day is not going to be your day. Every week is not going to be your week. You're going to have missed plans, disappointed friends and family. It happens. But they do not (fully) understand the battle that you are fighting with your body every second of every day. Forgive yourself when those missed opportunities happen. Sure, you'll feel sad and disappointed, but you'll come to realize that you're ability to get up tomorrow is WAY more important than going out for a drink with Bobby tonight. 

5. ELIMINATE THE HATE

If there are people in your life who continually being you down, hate on you for your disease(s), your inability to go out the way you used to, etc despite you having explained why, then it's time for you to have a serious chat with them. After said serious chat and no change, give them one to two months to get their act together and then give them the boot. Your health is ENTIRELY too important to waste time and energy on negative people in your life who don't want to take the time to try and understand the changes in your life. 

6. FIND OUT WHAT WORKS FOR YOU

Everyone, the doctor, the nutritionist, the physical therapist, the psychologist, your family, friends, people with the disease, people with family who have the disease, people who schlep holistic stuff...EVERYONE will give you advice. It's all well meaning. It's all overwhelming. Find what works for YOU. It takes time. It takes failure. It takes experimenting. But do what works for you without all of the voices telling you what to do. 

Those are just a few of the tips that I have with coping with a new diagnosis. There are, I'm sure, more that I could come up with, but these are what I came up with for you all today. I hope that you find them useful and can pass them along! 

A Tale of Two Rough Nights

Having one rough night is bad enough. Two in a row...! That's inexcusable! Last night I was wracked with a migraine and stomachache SO bad that I was brought to tears. Home alone, I was forced to call for reinforcements at 11pm. Luckily, my friend Michelle came and sat with me and helped me avoid another trip to the emergency room. 

She grabbed an ice pack and snuggled me into bed and put the pack behind my neck and that calmed the worst of it. I was finally able to doze off for the first time all weekend. She kept vigil by my bed most of the night, which was comforting, and made sure that I was alright. 

Tonight, I lie awake with a HORRID stomachache and throwing up everything...even water. I've taken a melt away zofran, used an ice pack (having that on my tummy did NOT feel good), had my back rubbed, and taken phenergan, all to, so far, no avail. 

Come morning, urgent care will have me reenacting the old Mervyns commercial "Open! Open! Open!" Hopefully they'll be able to provide me with some relief. I can only imagine how dehydrated I am. 

It's aweful being awake in such excruciating pain knowing that there's no real place for you to turn. I feel helpless, my parents feel at a loss, the ER tells me they're not the place to turn to, I feel like urgent care will most likely tell me the same thing--what, then, am I supposed to do?! Live with it? Suck it up like a champ? This isn't a bruise, splinter, twisted ankle, or run-of-the-mill stomach issue...this is serious here, people!!

Do doctors take a course in chronic illness? I mean, in how to deal with them at the bedside manner end of it? If they don't, I think they should. Many of them lack, SEVERELY, the proper bedside manner needed to deal with someone living with chronic illnesses. Pleas don't belittle us. That's the last things we need since, often times, coming in to the ER or urgent care was one of the hardest decisions we had to make that day anyhow. 

A Letter To My Loved Ones

Dear Loved Ones,                             May 23, 2015

Being Chronically Ill sucks! I'm sure watching me be Chronically Ill really sucks, too. There's not a day that goes by that I didn't wish that this disease would just disappear from my life—OUR lives, really; but, let's be honest, it's not looking too promising. So I guess that the best thing that we can do is buck up and do the best that we can under the circumstances. I try to look at it as a blessing of sorts—weird, I know—because I think that Gastroparesis has made me a stronger person. It's a bummer that something like this has had to come into my life to make that happen, but...

Se la vie!

I want everyone to know that I love and appreciate all of your prayers and support. I am thankful for your understanding during my difficult times and my good times, as well. Thank you for embarking with me down this adventure that is Diary of A Gastroparesis Warrior and the outlet that it has afforded me. Thank you for allowing me to educate you and whomever else out there in this great wide world about this little known disease. Thank you for just being understanding.

Please continue to be sympathetic toward days when I have to cancel plans, be a party pooper, or am a little melancholy. You know that is not my normal M.O, but just means that my normal gusto has just “gusted” out the window that day and I need a breather. Don't EVER feel bad for asking how I am, that's showing concern, but don't chuck me under the chin and tell me to “buck up” because I might buck you under the chin and chuck you out of the door! I don't expect you to understand what it is I'm experiencing, but you can ALWAYS ask me to describe it—or just admit you don't know and say you're thinking of me! Empathy and sympathy goes a long way!

At the end of the day, a simple text, a “hey, lets get coffee/catch a movie”, dropping a card in the mail does wonders for a person's mood. We all lead a busy lives, even those of us who are Chronically Fabulous—but a little thought counts!

Sincerely,

Christine

The Girl With Gastroparesis and the Emergency Room

Making the decision to go to the ER is a difficult one for someone with a chronic illness. You already know that there's not going to be much that the doctor's can do for you, but, at the same time, you want someone to help you. 

That was the case with me last night. 

But being in as much pain as I was in, I just couldn't bare it any more...so in I went. I had my blankie, my hoodie, everything I needed to be as comfortable as possible in that cold environment. 

When the doctor came in he said he had looked over my chart and said that my last gastric emptying study had been "iffy", whatever that means. Whenever the doctors bring up the study they each say something different. This time it was "iffy". I wish they would come to a consensus about it. The he asked me what was going on and for how long. When I explained I had been in indescribable pain for several days he said "the ER is not for chronic conditions it's for when your stomach is bursting open."

Thanks, Doc. 

He also said "I don't care if you're a cop, a doctor, a priest, or Mother Teresa, do you use marajuana, cocaine, or meth?"...uh, no. I've never been asked that before, so that was an odd and interesting interaction. 

He, like most others--until they meet me--have never heard of the GASTRIC pacemaker, so I schooled him on the Gastric Pacemaker and it's purpose. His ears perked up then and he became fairly interested in what was going on then

He did some tests...blood, an x-ray...gave me some medicine and when it all came back normal--as usual--he sent me on my way home.

Just once I would like for a doctor in the ER or urgent care to act like they give two rips about me even though I'm a chronically ill patient. We see SO many doctors and have SO many tests and SO many procedures, why on EARTH would we want to go to the emergency room unless we have to??! A little dignity and respect would be awesome to experience when going in rather than being lectured. 

Starbucks and the Girl with Gastroparesis

Hello, my name is Christine and I am a Starbucks addict. Every morning on my way to work, without fail, I drive up to or walk into Starbucks and order my venti Java Chip frappaccino with extra caramel and extra chocolate--because I don't actually like the taste of coffee. Sometimes I don't even have to open my mouth to order, the lovely Starbucks barista already knows what I want...is that not sad? Nay! I choose to think it's good customer service!

At work I often get asked why I drink those every day or how I stay skinny drinking a gigantic Starbucks every day and the answer is simple and complicated all wrapped up in one big word: Gastroparesis. 

I'm sure I could--and should--make healthier choices when it comes to my nutritional intake choices, but sometimes it's just SO hard! And Starbucks is SO easy!  Plus, it tastes really yummy! 

Here is my thought processes behind it--and it TOTALLY works for me (I know, it's just an excuse, but whatever): I need to get calories from somewhere and where else better to get it from than a venti Java Chip Frappaccino?! ::high five if you agree:: I have such a hard time getting food in...a hard time getting anything in...but the frappaccino seems to go down alright...most of the time. It's helped maintain my weight for the most part and keep me running. If it works, it works, right? 

That's the thing with Gastroparesis, if you find something that works, run with it! Starbucks seems to work for me. It doesn't ALWAYS stay down, but for the most part, it does. At the end of the day, I try the best I can to keep my weight stable and the Java Chip seems to work for me. 

So thank you Starbucks!

The Donut Mistake

Well, I did it, I ate a donut like any normal person would for Teacher's Appreciation Week/Day would...except, I'm not any normal person. I keep forgetting that. You would think that, after having Gastroparesis for five years and having countless tests and procedures, being poked and prodded countless number of times, diagnosed and misdiagnosed and diagnosed again, that I would remember "Hey, eating that chocolatey, doughy round thing is going to send you into a tailspin of despair for X amount of time." 

Nope! I ate that sucker anyway. And I ENJOYED it!

Since eating said donut I have been in a gastroparetic flare for a week. I have had such a difficult time consuming liquids, let alone food. My stomach has been painful to the touch, movement, and just sitting there. I have requested from family and friends alike for an -ectomy of my whole trunk, but they won't oblige--so rude. A pox be upon you donut world, this is your fault!!

...ok, maybe it's more MY fault for giving in to temptation, but I was frustrated that day and chocolatey goodness is my weakness...

Here's the thing with Gastroparesis:: there are varying degrees of it. There are certain things that I can eat that Sally can't. There are certain things that Sally can eat, that I can't. There are certain things that NEITHER of us can/should eat.  Therefore, Sally might be able to handle bread products; whereas (CLEARLY) I cannot. So, if you see me reaching for that chocolate donut again in a moment of weakness, slap me...HARD! 

I attempted onion rings today. That was a big mistake as well. Again, if you see me reaching for those friend rings of yumminess, slap my hand and scream "NO!" It'll only benefit me in the long run. Like the donut, the onion rings are not sitting well and I'm feeling quite sick. Maybe the disease is progressing more? Maybe I'm finding I have more intolerances? Maybe they've always been there and I've just turned a blind eye, who knows. Just remember to tell me "NO, Christine!" when you see me reaching for those kinds of things. 

Triggering foods stink! They make you feel miserable, they make your friends feel miserable for you, they make life in general miserable, so it's best to just avoid them. 

Goodbye, donuts.