Find us on Google+ Gastroparesis: September 2013

Friday, September 20, 2013

Ultrasound Today - Update on my Personal Struggle

I went to Emory for an ultrasound today at the bequest of my Doctor, for my liver. My liver enzymes have been quite high over the past two years now, and no one has discovered why. When I was first diagnosed with Gastroparesis, the theory was that it was because of stones in my liver. They went in and relaxed my sphincter that doles out bile from my liver, removing a "gravely type sludge," as my doctor put it, from where my gallbladder used to be. The Doctor at Emory told me that with Gastroparesis, there should be no pain. Every time a doctor tells me that, I want to laugh in their face and correct them. Tell them that if they had Gastroparesis, they'd feel differently. Everyone I've talked to that has been diagnosed, even with mild Gastroparesis, has dealt with some sort of pain.

So, a good friend and fraternity brother of mine, picked me up and took me to Emory. I was led into the room with the ultrasound machine. I laid down on the table and lifted up my shirt for the procedure. I was happy to say that there were butterflies painted on the ceiling tiles so that I actually had something to focus on. The lab tech started and pressed the probe down on such tender parts that had been giving me such pain. I bit my lip and squeezed my friend's hand because it hurt so much. I had an emesis bag, just in case I needed it.

I looked away because it hurt too much. My friend said the lab tech was making awful faces and she had a feeling that they found something wrong. Of course, the lab techs won't tell you anything - it's a liability factor. She had me turn to my side and looked at my kidneys as well. Then, we were done. The procedure probably took half an hour of thorough investigating with a very painful probe. Ultrasounds normally aren't painful, but I've been experiencing pain in my upper right side. I didn't start retching until we were in the car. Anytime a doctor or someone presses on my upper right side and my stomach - I vomit. Thankfully, it waited until I was home. I fell over on the toilet and vomited up what I tried to eat for lunch today - considering I haven't eaten in a while. I was thankful I had something to vomit up besides bile. I realize how bad that sounds but I've been throwing up nothing but bile for days, my throat welcomed some relief.

I've been coughing a lot because my throat is irritated from vomiting. The doctor will receive my ultrasound report in a few days and call me with the results. I'm nervous because my liver enzymes are high and I don't know what that means. I've never been so nervous. Will I have to have more surgery? Will someone take me seriously? I need some help. What I'm doing right now is not living - it's awful.

The only solace in the past few days have been my husband, who is a wonderful and caring man, and reading outside in the sunshine.

I am anxiously awaiting the results and to wonder where to go from here.

In the meantime, I've made an appointment with a psychologist because I am determined to prove to these doctors that the anxiety didn't get worse until after I had Gastroparesis. The doctor I saw before, not at Emory, at Mayo, told me that this was all in my head an all anxiety related. I want a doctor to evaluate that and tell me that it's not true. I just need someone to listen to me. I can't make up vomiting or pain like this. It's immobilizing. My friends and family see me suffer and I barely recognize my own reflection in the mirror because of my hallowed out, pale face, and the dark circles under my eyes. I think it will be good to have someone to speak with anyway, but I want someone to validate me and say that my GP is legitimate and that it's not caused by anxiety. That made me angry more than anything when the Mayo doctor told me that. I think he only did so because he correctly assumed that I'd be a complicated case, and he didn't want to deal with me personally.

I'm keeping track of my symptoms in a written journal, along with how I feel. A GP friend of mine told me about an app available called MySymptom Tracker. It's $3 in the Google Play store but worth it. So, I track my vomiting, medications, mood, etc on my phone as well. You can download it and bring it in with you to your doctor, which I find useful. I document everything. It's a good habit to have.

I feel like I'm preparing for battle. I'm going to fight to be healthy again.

Monday, September 16, 2013

Poetry, Pen Pals, and Motivational GP Diaries

My friend Cheryl wrote this and I thought it was worth sharing. She's a talented writer. This really spoke to me because for the past few days, I've been very sad. Sometimes, it just seems like the GP cycle is endless. Sometimes, it feels like you'll never get better. I'm not usually so negative, but vomiting for the past three days and having the new doctor write me off just made me a bit depressed. Then, I came across my friend Cheryl's poetry. This spoke to me and cheered me up. It made me realize that I need to keep going. That things will get better and that I have the best Gastroparesis support network that anyone could have.



'Her Grace'
By: Cheryl Keene-Gutierrez

She has been isolated
She has been ripped apart
She has felt helpless
She hides her fears with a smile
She is stronger than she knows
She is a survivor
She is comforted by faith
She sees beauty everywhere
She adores her family
She values her friendships
She prays for others
She will never give up hope
She is truly blessed
And In pain she found love.




My friend Melony has also started a Gastroparesis Pen Pal Outreach Group on Facebook. If you are interested in writing and sending things back and forth to a fellow GPer, please visit her group. The link is here: http://www.facebook.com/groups/gastroparesisswappingcorner/. It's worth it to have someone who understands what you're going through and written mail is becoming a dying art.

If you have a smart phone, my friend Sarah recommended an app to me. It's called MySymptoms: Food Diary and it's a diary for your phone. You can add your medications, what you eat, how often you get sick, all of your symptoms, stress levels, sleep quality, energy level, bowel movements, and more. It's easy to keep up with it.

I downloaded it at the Google Play store.

The only drawback is that it's $2.99 for the application, but it's worth it since we all carry our phones with us everywhere - even when we go out to eat (as rare as that happens).

You can download your data and give it to your doctor as well. I downloaded it and would highly recommend it to anyone with Gastroparesis. It's easy to learn how to use and it is easier to add things to your phone than to write them down sometimes. But I know that we all carry phones with us. I'm still going to use my GP journal and write in it but I'm also going to keep track of things on my phone now too. It never hurts to have a back up.


I'm also going to share a few images that have gotten me through the past few days. I started a Gastroparesis diary, which you know of. I usually cut out images I find like this and put them in my diary to remind me to be strong. The Gastroparesis diary is really useful when I'm not near my computer to blog. I suggest strongly that you start one too. It really helps you to vent and keep track of what's going on to your body for your doctor. Maybe, it might be worth publishing for others lately, so they know they're not the only one struggling.





Wednesday, September 11, 2013

From August Until Now

As of right now, my medication list is extremely long.

I'm taking:

Linzess 290mg - once daily
Phenergan 25mg - three times daily
Zofran 8mg - three times daily
Vicodin 10/325 - four times daily (for my lower back - I keep straining it vomiting and may have shifted the spinal cord stimulator out of place)
Xanax 0.5mg - four times daily
Celexa 20mg - once daily
Implanon - birth control I need to call and get replaced
Restoril 15mg - twice at bedtime for sleep
Trazadpne 50mg - three times daily
Protonix 40mg - twice daily
B-12 Injections

I feel like this when it's time to take my medications:



I saw my doctor in Augusta about what to do since none of the doctors here are listening to me. He was going to recommend a great GI doctor to me but I guess he got side tracked. I'll have to call him and find out the person. None of the ones up here seem to care and they've managed to convince my husband that this is all in my head due to anxiety. My Augusta doctor wanted me to go to the ER but I refused. Instead, he gave me medications and my sister took me to her house and made my comfortable.

I've been managing to eat small amounts here and there. Yogurt and maybe a bite or two of bagel. Nothing substantial.

I started my period on the 23rd - and it made my GP TEN TIMES WORSE! I'm not the only one who suffers this way. I wonder what the connection is between GP and hormones? I want to bookmark this to come back to it and research it later.

The doctor at Emory yesterday wants me to get an ultrasound for my liver. She's worried about my high liver enzymes. She switched around my medication and wants to see if that helps. I wanted to scream at her that my medicine has been switched around before with no relief! Ugh! But I understand conservative measures first. It just SUCKS. I have to follow up with her in six weeks.

I woke up yesterday and vomited directly into a trashcan. I wonder why I couldn't do that in front of the doctor? *sigh*

Oh well.

But, I have a new phone now so I'm easier to get in touch with. My old phone stopped charging.

Hang in there and keep fighting. I'm working on an article coming up about stress relief and how to manage stress. I just wanted to check in.



The top picture is before I ate, the bottom picture is after I ate.