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

Gastroparesis Journals, Poetry, and Pen Pal Groups

I have a favorite poem that I wanted to share with all of you. It has been my favorite since high school. It really spoke to me because for the past few days, I've been very sad. Sometimes, it just seems like the Gastroparesis (GP) cycle is endless. Also, it feels like I'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 thought about my favorite poem. It has always spoken to me and cheered me up when I've been at my lowest. It made me realize that I need to keep going. That things will get better and that I have the best Gastroparesis Warrior network that anyone could have.


"'If'
By: Rudyard Kipling


If you can keep your head when all about you
Are losing theirs and blaming it on you,
If you can trust yourself when all men doubt you,
But make allowance for their doubting too;
If you can wait and not be tired by waiting,
Or being lied about, don’t deal in lies,
Or being hated, don’t give way to hating,
And yet don’t look too good, nor talk too wise:

If you can dream—and not make dreams your master;
If you can think—and not make thoughts your aim;
If you can meet with Triumph and Disaster
And treat those two impostors just the same;
If you can bear to hear the truth you’ve spoken
Twisted by knaves to make a trap for fools,
Or watch the things you gave your life to, broken,
And stoop and build ’em up with worn-out tools:

If you can make one heap of all your winnings
And risk it on one turn of pitch-and-toss,
And lose, and start again at your beginnings
And never breathe a word about your loss;
If you can force your heart and nerve and sinew
To serve your turn long after they are gone,
And so hold on when there is nothing in you
Except the Will which says to them: ‘Hold on!’

If you can talk with crowds and keep your virtue,
Or walk with Kings—nor lose the common touch,
If neither foes nor loving friends can hurt you,
If all men count with you, but none too much;
If you can fill the unforgiving minute
With sixty seconds’ worth of distance run,
Yours is the Earth and everything that’s in it,
And—which is more—you’ll be a Man, my son!"
Poem can be found at: http://www.poetryfoundation.org/poems-and-poets/poems/detail/46473


The meaning behind the poem is this:

"‘If‘ by Rudyard Kipling: About the poem

The poem ‘If’ by the India-born British Nobel laureate poet Rudyard Kipling is a poem of ultimate inspiration that tells us how to deal with different situations in life. The poet conveys his ideas about how to win this life, and after all, how to be a good human being.

The poem, written in 1895 and first published in ‘Rewards and Fairies’, 1910 is 32 lines long with four stanzas of eight lines each. It is a tribute to Leander Starr Jameson. The poem is written in the form of paternal advice to the poet’s son, John. You may read more about the poem at Wikipedia.

For the theme, as already told, the poem basically tells us the conditions that we should meet to succeed in life and make this life happy and a beautiful one. The whole poem is written in a single complex sentence. So all the subordinate clauses begin with ‘if’ and the main clause concluding the entire theme comes at the end, and the poem ends with a full stop.

This structure of the poem was important to achieve the conditional goal. The poet speaks of the achievement at the end, after discussing all the requirements to reach there. This structure is actually symbolic in suggesting that you can get the rewards only after you have fulfilled the preconditions. Moreover, this makes the readers eager to know what would happen when we meet all these conditions, thus retaining the curiosity and interest till the end.

And, as the main theme of the poem is a combination of so many if’s, the title ‘If’ is an apt one for the poem."
The meaning of the poem can be found here: http://englicist.com/summary-analysis/poem-if-rudyard-kipling-summary-explanation




There are several pen pal groups in the Gastroparesis community, so I wanted to put out a warning to everyone:

**WARNING** Any Pen Pal groups that you join is to get to know people. If you feel comfortable, friend them, and then share your private information with them. The admins should NEVER ask you for your personal information, unless you get to know them and you want to share your information with them as pen pals, but that's if you are comfortable enough. Just be careful. Your personal information should not be posted on the wall for all to see, because you never really know who is looking at it. The admins try to screen our groups carefully, but occasionally, we miss someone who may be a scammer.

I just wanted to caution anyone who is joining a pen pal group because I've had that happen and it's a very scary feeling, especially if someone tries to steal your identity. I've had this happen to me, which is why I just want to caution people to be careful. Pen pal groups can be amazing because they make you feel less isolated and alone, and it's nice to get real mail instead of spam for a change. Just be diligent. And your information should NOT be in the files section of the group for all to see. Pen pals usually only need your address and maybe your birth month and day to send you things on your birthday. You don't have to give them the year unless you know that person and trust them completely. I'll reiterate, just be careful with who and where you give out your personal information.

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 Gastroparesis 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 started a Gastroparesis journal, which you know of from previous articles in this blog. My 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 to keep track of what's going on with my body for my doctor, including questions so that I don't forget to ask since I don't get a whole lot of time to talk to the doctor. I write in mine daily. I keep track of my medications, when I attempt to eat, when I vomit, if I have a bowel movement, and the times of all of it. I also vent in it because it's not healthy to keep your feelings bottled up, and writing helps me cope, but everyone has different coping mechanisms that help them. Your gastroparesis journal could be as simple as a spiral notebook. I would highly suggest that you start one, if you don't have one already, because it really does help keep track of things, especially if you have a hard time remembering things like I do. I call it, "GP brain."

This is my Gastroparesis Journal. It's actually River Song's journal replica from Doctor Who.





I'm also going to share a few images that have gotten me through the past few days. I usually cut out images I find like this and put them in my diary to remind me to be strong.

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.