Testing...Testing...Testing...

Today I had my fourth...yes, FOURTH...Gastric Emptying Study done. If you've never had one, here's how it goes: 

Step 1: Eat either an egg salad sandwich or oatmeal (Today I was given oatmeal, which is a first for me)
Step 2: Take an X-ray of your belly
Step 3: Wait an hour in the waiting room
Step 4: Take an X-Ray of your belly

Step 5: Wait an hour in the waiting room
Step 6: Take an X-ray of your belly
Step 7: Wait 2 hours in the waiting room or go shopping (I chose to wait because I had a prime parking spot)
Step 8: Take an x-ray of your belly

Today, at Step 8, they didn't take the x-ray because I still had food in my belly. Oatmeal from 9:45am was still in my tummy at 1:45pm. So they had my go sit and twiddle my thumbs--I'm an excellent thumb twiddler--until shortly after 2pm. They went ahead and took the x-ray, but I could see on the

imaging screen that my stomach was still glowing. I don't know if the technician just said internally "forget it!" and went ahead and took the x-ray because by this time it had been 4 1/2 hours or if my stomach had emptied and I was seeing residual glow. I'm no radiologist. But the technician had said that she wouldn't be surprised if it comes back abnormal.

Well, duh! For almost 6 years now my diagnosis has been (some severity) of Gastroparesis.

I don't know about other Gastroparesis Warriors,  but every time I take that test a couple of things run through my mind. The first thing is: Dangit, why do I have to take this test again?! The second is: What if it comes back normal? Or not

as severe as I FEEL like it is? Instantly you feel as though your family, your friends, your doctors are not going to believe a THING you've been telling them! That's how I felt today! It's a horrible feeling!

Of course you don't WISH or HOPE to be super sick, you just want it to match up with what you're telling everyone. And of course you don't WISH or HOPE for drastic interventional measures to be taken to help you improve your life, but when eating 4-5 bites of oatmeal makes you feel sick to your stomach and you burp it up for hours, all you want to do it avoid food!

Wednesday August 5th brings yet another test, an endoscopy--more fun!--and hopefully more answers or confirmation for the new GI. Having Gastroparesis is NO joke. It is not a weight loss program to sign up for. A stomachache to take lightly. Something I am making up in my mind. It is VERY real. I would not wish this life on my worst enemy (if I even had an enemy).

The Drive-Thru Of Life

What can I say, this is not the life that I ordered...

When I drove up to the Drive-thru Of Life, this was not the life that I ordered at the speaker. I didn't ask to be feeling sick all of the time. I didn't ask to feel nauseous 24/7, to have no

appetite, to throw up my food. I didn't ask to have doctor visit after doctor visit after doctor visit. I didn't ask to have all of these stupid tests done to me that hurt and are uncomfortable. I didn't ask to hurt, to ache in my bones after spending a day at the park with my puppy. Somewhere along the way there was a breakdown in communication. Somewhere along the way a signal got messed up. Somehow I ended up with someone else's life.

But no, it's my life...

And I have to remind myself that, while it's not the life that I would have chosen for myself, it's the one that was given to me and I need to make the best out of it. Beauty out of pain sounds so cliche, but it's the truth. A person doesn't know who they're going to touch in their journey with Chronic Illness, so you have to chose which Path you're going to take: Positive Life Changer or Life Dampener. It's really up to you.

When you feel sick and hurt all of the time, it's easy to take the road of Life Dampener REALLY easy. You can wallow in self-pity and the pity of others, live in your PJs, only shower

when the funk of life has caught up to you, and call it a day. Or you can be a Positive Life Changer and, despite the pain and struggles of your disease(s), live life as fully and happily as you possibly can (tubes, admissions, tests, and all!).

I know that the struggle of sitting on the fence between those two worlds is real, there are days when I sit VERY precariously on it and want to take a not-so-pretty swan dive

right into Self-Pity-Land. I did not want to be sick like this, I want to eat a hamburger (darn it!), and I want to be able to make plans to go out with friends without worrying about cancelling. This is no life for someone my age! But then I take a step back into reality. Counting the blessings and the positives makes the negatives of my life a little less important...Did you see how awesome the clouds made the sunset tonight?!

Yes, this is not the life that I ordered or would have remotely imagined for myself. I would not wish it upon my worst enemy. But to ease the struggles and the pains that I DO have to experience in this life that has been bestowed upon me, I have chosen to be (hopefully) a Positive Life Changer. I hope that you can find it within yourself to do the same.

Gastric Emptying Studies, Endoscopies, Bloodwork, and Medicines...Ohmy!

Today was an exceedingly LONG day seeing the new Gastroenterologist (and the resident) today all in the hopes of, or the end game of, getting started on Domperidone again. 

Yeah, about that...

I first spoke with the resident for about fifteen minutes giving her the lowdown on Life with Gastroparesis. How do you condense 5 1/2 years of UGH into a short visit? It's hard to do! She looked me over and then went and got Dr. Lim. 

When he came in we kind of, even MORE briefly, went over my history and what I've been experiencing on a day-to-day basis...nausea...lack of appetite...vomiting...constipation...pain...He then examined me and said that, before even getting CLOSE to Domperidoen, the FDA stipulates that I have to have, not only a Gastric Emptying Study (GES), but an Endoscopy as well. 

RAWR!!

He mentioned that, since I've had the Botox therapy in the past (once, five years ago), there have been cases of people having scarring from it and causing the stomach (in assuming maybe the pylorus, but maybe I'm wrong) to close up, so then it'll need to be stretched. That may be a possibility with me. I'm sure it's also to check to make sure there aren't any ulcers or other things going on. 

The GES is a GES...I hate doing them because you have to eat so much food and lay around with a GIGANTIC bellyache. 

Dr. Lim also had me do bloodwork to check for diabetes, as Gastroparesis is commonly thought a diabetic issue. He also checked for any thyroid problems. He wants to rule out anything that might be causing my gastroparesis and constipation/IBS and treat that as opposed to just putting me on Domperidone right away. 

I appreciate his thoroughness and his kindness. I'm just done with doctors and told the resident as much. It's nothing against them specifically, it's just the situation as a whole. When you go to the doctor almost as much as you go anywhere else and then you feel like you get little to no answers, little to no help, grief for asking questions, you just don't want to see any more scrubs or white coats. 

I'm hoping for some answers from this, particularly since I have to do an Emdoscopy...again. I hate those things. 

Things I Wish People WOULD Say To Me

Having a Chronic Illness is really, quite possibly, one of the most awkward things to enter your life. Akin to a "Kick Me" sign on your back or a big booger hanging from your nose that nobody bothers telling you about, it's just socially something many people do not know how to handle. "What if I say the wrong thing?" Is something that I'm sure runs through the minds of many peoples' minds--or maybe not, based on the strange, random, and rude things I've been asked, told, and suggested; but I digress. 

Often times people with Chronic Illnesses dwell or warn againt the negative, "DON'T say/do thus and so..." but then we never bother to give you the other side of the coin and tell you things we wish people WOULD say or do for us. And, I think, it's because we so often dwell on the DONT

and "I rather you didn'ts" that so many of our friends are scared away. 

Come back, dear friends, because here is (my personal), list of::

A FEW THINGS I WISH PEOPLE WOULD DO::

1. Ask how my health is, not how are you but how is your health? And then listen with intent and purpose. So many times it feels as if, when asked by friends, we aren't being listened to because we are reporting much the same thing to you (nausea, fatigue, vomiting, doctors visits, etc) but that is the mundane routine of our lives a lot of the time. We know and understand that you want us to be better, 

WE want to be better, but, for the majority us, it's not going to be mediconed, protein shaked, deep tissue massaged, or surgery-ed away, it's just...life. 

2. I wore [insert color here] in support of you and your disease and posted it on social media today because I know your disease is rare. I know that this might seem trivial, but it's not! It means that you're thinking about me, you're thinking about the cause at large, and you're thinking about getting the word out there. Every little bit helps, right?!

3. Would you like ME to come visit YOU? I live in the middle of nowhere. I know this. I've lived here since the dawn of time. Nobody wants to drive here, but somehow the distance becomes shorter when I have to drive to someone else. It would be awesome to have a person come and visit me, knowing that merely getting ready makes me tired (I don't know that I've ever said that out loud before). 

4. I looked up [insert disease(s) here] to hopefully better understand. The willingness of a friend to take the time to look up another's disease(s) to try and better understand what they're going through means a lot. You can only learn so much can through the Internet, but it still shows a willingness to learn and not just ASSUME things. 

5. I was thinking of your recently, so I dropped a card in the mail, actual snail mail, so you should be getting it soon. Receiving a card in the mail, just because, is so awesome! Particularly for someone who is Chronically Ill. Getting that little pick-me-up at random can get us through a hard time better than any medication can (trust me, you'd be surprised). It shows that someone in the Outisde World is thinking of you. When you're so often sick, you start living in a bubble and it's all routine and humdrum, so a card can do wonders. 

I hope this list, in no particular order, sheds a little light onto what makes someone who is Chronically Ill smile. Being listened to, being supported, being visited, and randomly surprised (at least for this chick)...and chocolate never hurt anybody either!!!

Domperidone...Again

Yesterday I trooped back in to see my surgeon, Dr. Marrujo, to be checked up on as far as my health goes. Since having Alfred--my pacemaker--turned off in February, I've slowly gone down hill, though it's really just been in the last six weeks that it's been really noticeable. We discussed the fact that my bloodwork came back normal--no real shocker there--and what the next step should be. 

Domperidone. 

I've taken this medication before, albeit, about five years ago, and it didn't do anything for me except make me feel weird. Since, five years ago, I had to get it from Canada and it wasn't necessarily regulated properly, I'm going to be seeing a Dr. Lim who is running a trial here at Kaiser to see if, with the proper dosage, it does what it's supposed to do. 

Like most any other person with a Chronic Illness I'm like "great ANOTHER medication". You really just want to be done with everything, if I'm totally and completely honest with you. You get incredibly tired of having medications upon medications in your nightstand and being in different trials and it getting you nowhere. 

I. Am. Just. Tired. I'm not giving up! I'm just tired. I'm sick of losing weight and gaining weight and losing it again. I'm sick of my hair dying. I'm sick of the dry skin. The insomnia. The body pain. It's just a lot to handle when all I want to do is help other people. That's what I LOVE to do. I want to help others, not be helped and it sucks. 

Pity party over. 

So now I wait for Dr. Lim's office to call me so that I can meet with him to make sure that I qualify. Then, I guess, I will start Domperidone...again. 

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!