11.28.2014

So it begins...

Today is the first day of my low-calorie, clear-liquid diet. My doctor wants me to be on it for 7 days before my surgery because it will shrink my liver. This is important because they will be lifting my liver during surgery, and if it's too big/ heavy it will be more difficult to move. Not all doctors require their patients to do a pre-op diet for this surgery, and I'm willing to be my liver is ok the way it is, but I'm not going to go against my doctor's orders. Ok, I did cheat once today but that's only because I wanted one *last* latte and I couldn't get one yesterday. It may be my last one for a long time (possibly ever?) because I've heard that caffeine can irritate your "wrap" (in this surgery they wrap your stomach around your esophagus.)

Here is what my official diet handout says (things I can't/ don't eat are crossed out):

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Consume these items in moderation. They contain large amounts of sugar.

- 2 cups or less per day:
     * Gatorade, Powerade, juice (orange, apple, grapefruit)
 - 3 or less per day:
     * Regular popscicles, Jell-O, sugar-free fudgsicles
- 3 or less per day (any combination):
     * 1 cup of lowfat milk (skim, 1%, 2%, or lactaid)
     * 8oz light yogurt
     * 1/2 cup cottage cheese
- 1-2 per day:
     * Atkins shakes
     * Carb Solutions shakes
     * DO NOT consume SlimFast, Ensure, or Boost (these will be allowed on your post-op diet)

Consume these sugar-free items in any quantity:

- Sugar-free drinks like Crystal Light, sugar-free Kool Aid, diet soda, diet tea, black coffee, water
- Broth from soups (any flavor, no chunks)
- Sugar-free Jell-O
- Sugar-free popscicles

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Now I suppose is a good time to tell you that I react very, very poorly to any kind of artificial sweetener so all that "sugar-free" stuff is a no-go. I gave an Atkins shake the ol' college try today and not only did it taste like milk flavored water (it was "french vanilla" "flavored") it made me feel even sicker than I was already feeling.

Right now it's only been 24 hours on this diet (and I even cheated with a latte) and I already feel like I'm going to fall over dead. Tomorrow I'm going to attempt to make some bone broth and pick up a bottle of liquid vitamins. If I can manage to drive a car that is.

I wouldn't mind fast-forwarding to the end of the year right now.

Oh, and R did this the other night:


It's not like it's taken her her whole entire life to grow her bangs past her chin when the rest of her hair is halfway down her back. After living with bangs for the first 12 years of my life, I made a solemn vow when I found out I was having a girl that I would never give her bangs. Funny how the universe works sometimes.

11.18.2014

Living with PTSD. A guest feature.

The following is Courtney's experience living with PTSD after witnessing the aftermath of her daughter being attacked by a dog.

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I was told my PTSD was temporary, that as time went on and the scars began to heal, I would heal as well. I was told I would get better and that my intrusive thoughts would happen less and less. I was told that my mind would essentially forget most of the traumatic events that occurred that day. I was told I would be ok.

I may not be the poster child for PTSD and for a lot of people, they probably wouldn't even think I have it all. That's the hard part of this disorder, there is no straight definition, no blanket diagnoses. The severity of it is as different for each of us as the traumatic event that brought it on in the first place. Some people can see the most horrible thing and walk away untouched, never to think of it again. And then there is me... I think of my event every single day. It pops into my head at the most absurd times, it stifles my thoughts, it paralyzes my body, and then just as quickly as it enters my memory, it's gone. This happens over and over all day long, from the moment I open my eyes to the moment I close them. I have not gone one day since "the accident" that I haven't thought about what happened that day. It's still raw for me, 9 months later. I can still hear every word that was said, I can still see every drop of blood, I can still see every ghost white face and eyes filled with panic and disbelief. I can even smell the air I was breathing in that night. It is as vivid now as it was in the moments it was happening.

"The accident" is what my family calls the brutal attack, as to not further traumatize my daughter who has also been diagnosed as having PTSD, a severe anxiety disorder, and recently a seizure that could possibly be linked to her PTSD. Taylor, my daughter, is the strongest child I have ever met. She has handled her "accident" better than I ever imagined any 7, and now 8 year old, could. She's my Hero and I'm so thankful for her life every day.

While Taylor's PTSD is mostly suppressed from her memory, she still has debilitating anxiety and panic attacks causing her to become physically ill and most recently passing out and having seizures. She suffered from severe shock the night of her accident and because her brain chooses to block that memory, she could be doing anything, even something she thinks is fun, and her brain will go into survival mode and shut down. Her disorder is scary and keeps me on my toes day and night. I'm constantly making sure she is ok and trying to protect her as much as I can. Taylor's disorder is very different from mine even though both our disorders stem from the same traumatic event.

My PTSD fills me with rage and so much pain for my daughter, that I can't handle life happening around me. I have to shut everything out and sit in the dark until I can breathe again. My flashbacks are quick and to the point. They're intrusive and hurt my heart more than any memory I've ever had, but they last only a few seconds and then they're gone. It is the conversations or hearing other people talk about Taylor's attack that cause my mentally violent rage. I become someone I don't recognize. I scream and cuss at people I don't know because I am filled with more emotions then I can handle.  I've struggled for as long as I can remember with anxiety and panic attacks but, what comes with having PTSD turns me into someone I don't know.

As soon as anyone starts talking about Taylor's attack I can feel my body getting hot, I start to see spots, and I feel like I have a thousand bricks on my chest. My mind instantly shoots back to the night of the attack and then there I am holding my daughter covered in blood. I can't understand the words coming out of her mouth and I can feel the fear I had in that moment, that my beautiful, smart, perfect daughter had brain damage and had lost her right eye, that she would never be same. My mind is completely consumed with the vivid memories of that night, while my mouth is having a conversation with someone who has no idea what I'm actually thinking about. Sometimes I have to walk away when someone asks about her "accident". Other times I am able to overcome the flashbacks and continue to have a calm conversation about Taylor. But then there are the times where I don't even remember the things I'm saying because I become so enraged I lose control over my thoughts and words. The bad days are becoming fewer and far between, but they still happen and they still leave me feeling guilty for losing control of my feelings. I'm working on getting professional help because obviously my PTSD has not gone away like I was told it would. I'm ok with knowing I could have this disorder for rest of my life, but what I'm not ok with is my kids seeing me angry and hateful. I don't want Taylor to grow up hating the people who did this to her, and I don't want her little sister or brother to grow up to be hateful or spiteful either.

Writing this piece was my first step to reaching out for help. I saw a therapist a couple days after we learned Taylor was in fact attacked by the dog down the street. Deep down I knew all along that was what had happened, but when the police told me it was an accident and she fell, part of wanted to believe them. I wanted to believe that it was that simple, that she just got knocked over, and cut her head open. It hit me like a wrecking ball to know my fears were true, that she had been attacked, and it hit even harder to know that the owners of the dog refuse to admit what their dog did. It has been a legal nightmare from the moment we found out what truly happened that night. Some days I'm ok and my PTSD is manageable, I don't let it seep into me and ruin my progress. Other days are a lot more than I can handle and I have a hard time being around people. I am learning to balance my emotions and take every day as it comes. One step, one day at a time. I'm hopeful that with some help and understanding I will have more good days than bad. I am hopeful that I will be able to handle my PTSD, so I can better focus on helping Taylor with her PTSD. Taylor has spent a lot of time in sandbox therapy and animal therapy.  She is doing amazing and she is a true inspiration.

When everything changes in an instant. A guest feature.

For me, the most valuable part of blogging has come from the ability to share personal experiences and stories with a wide audience. Being able to write candidly about issues I have faced and continue to face has brought a great deal of relief and comfort into my life. It has also given me invaluable connections to people who would not have found their way into my life otherwise.

Although we live in the highly-connected internet age, there are still many topics that remain taboo. We put so much of ourselves online and yet there are still things that we find are too difficult to share. But oftentimes it's these difficult stories that ought to be shared the most. They can help you to heal, and others to learn.

The following is the harrowing experience of my dear friend Courtney in regards to the devastating dog attack that her daughter Taylor suffered earlier this year. Both Courtney and her daughter were diagnosed with PTSD after the attack, and both are still coping with it every day. Here are the details of the day that they will never forget...

WARNING: Very graphic images behind the cut.

11.12.2014

Things Fall Apart

When one of my health issues gets bad enough, I try to ignore all my other health issues. This is what has been happening lately because of my headaches. They have been so severe that I've been ignoring my GI track, even though it's been on a steep decline for the past few weeks.

Lately I've been having really terrible reflux- to the point where I'm waking up at night choking on acid. The reason I have reflux is because I have Gastroparesis. Because my stomach doesn't digest/ drain food and acid properly, food and acid goes up very easily. This is compounded by the fact that my lower esophageal sphincter doesn't close all the way.

My other Gastroparesis symptoms have also gotten a lot worse. I'm back to relying on nausea medication every day, I've stopped tolerating most foods, my stomach isn't doing any digesting at night which means I wake up very sick, I'm burping up even the faintest of food flavors for hours on end, and my bloating is worse than ever.

When I decided to get the gastric neurostimulator instead of having a fundoplication/ pyloroplasty earlier this year, I knew that it was only a band-aid procedure for nausea. I knew it wasn't going to help any of my other symptoms, but I wanted to see if a nausea reduction made living with Gastroparesis tolerable. It seemed to for awhile, but a few weeks ago things took a turn for the worst.

I knew that it was likely I'd need a GERD surgery at some point, and that it might also be in my best interests to reconsider the pyloroplasty.

Today I met with my GI doctor and he said that the only treatments left for us to consider are 1) the fundoplication/ pyloroplasty or 2) a partial gastrectomy- where they'd remove a portion of my stomach. Or I can do nothing and continue watching my ability to function like a normal human being slip away.

Obviously I don't want to have either of those surgeries. I wrote at length about all the horrible things I learned about fundoplications and pyloroplasties, and my fear of them hasn't changed. I could end up with dumping syndrome, diarrhea for life, or a leaking pylorus that would require me to have a gastrectomy anyway. Even if everything goes perfectly- and with my luck this seems improbable- the recovery from these procedures is still very long and very difficult.

But right now I'm in a unique position. Because my stimulator surgery was so expensive I've fulfilled my health insurance out-of-pocket maximum deductible for the year- meaning I get free healthcare until the end of the year. We have a high-copay, high-deductible insurance plan (which sucks), so squeezing as much healthcare as I can before the end of the year is in our bank accounts best interest. I can get the procedure done in the next few weeks for free, or I can spend another $3,500 to have it done next year if I take more time to decide. And we don't have that kind of money.

I just want to feel better. But I'm so scared.

My surgery is scheduled for December 4th so that the last real meal I'll be able to eat is Thanksgiving dinner.

11.03.2014

Our Halloween

I'm having a hard time accepting the fact that Halloween has already come and gone, and that it's November now. Today was a chilly, sad day and I celebrated the fact that it didn't snow by buying myself a caramel brulee latte and playing the Fallout Boy version of "What's This" three times in a row while driving home from physical therapy.

We had a wonderful Halloween though, even if the end of the night turned a little crazy.

I had a rough start to the day by waking up more nauseous than I had been in a long, long time. Luckily I was able to solve it with some medication- it seems that I just hadn't digested any of the food I had eaten the previous night. That's never a fun way to wake up. But when I was up and feeling better R and I spent a good deal of time perfectly applying her ghost makeup so she'd look perfect for her preschool costume parade (her preschool is part of an elementary school so they get to walk around with all the big kids too!) Everything looked wonderful...


... until I couldn't find they keys to the Trans Am and R absolutely and completely melted down at the prospect of driving the Commander. She cried off all her adorable makeup and I may or may not have cried a little too. We had invited our friends to come to her preschool Halloween party and then accidentally gave them the wrong time, so we didn't have any time to re-apply her makeup as we rushed out the door to meet our friends.

It was ok though because I got a little bit of makeup back on her face as we had Starbucks with our friends, and she ended up looking pretty adorable for her parade and party.


She loved staring at all the big kids in the parade and then had a great time at the little party her preschool put on. I've probably said this before but I just love her preschool so, so, so much!

After the party we went home and I decided that while the sun was shining and I was feeling ok that it was time to clean out the Commander. It had accumulated a full Ikea bag of clothes, toys, and other junk and needed a good vacuuming. We went and did that and then bought some candy to put out at our house. We waited for N to get home and I put out our bowl of candy with a "please only take one sign." This has worked twice in the past and I've come home to a practically full bowl of candy, but this Halloween we definitely had a "dumper." And on a year I bought good candy too!

When N got home we all headed to my parents house and I dressed up in my favorite werewolf costume (sadly I didn't get any pictures of myself) and painstakingly reapplied R's makeup, threatening to eat all her candy if she had another meltdown. (Spoiler alert: I've eaten most of her candy anyway.) My parents got us pizza and then left to go see a movie and we were joined by our dear friends Travis and Courtney and their three kids for trick-or-treating.

Their girls are SO good and sweet to R who is such a little bossy boss. They ran with her from house to house getting candy, and even tried to reassure her at some of the scarier houses. Three houses in my parents neighborhoods had really awesome haunted houses set up in the front of the house or in the garage and it gave me lots of grand ideas for the future. Ideas I can hopefully talk my parents into funding and hosting. ;)

Difficult to see but one of the haunted house setups. (Drag to url bar to enlarge.)
After hanging out for awhile we all headed home and all was well until about 1am. N got up to go to the bathroom and I immediately knew something was wrong. Sure enough, he was very, very sick- and let me know that he had been feeling off since he eaten lunch, but thought he had gotten over it.

Because we have a one bathroom house and I 1) need to go to the bathroom frequently and 2) have a massive phobia regarding throwing up, I decided to throw a sleeping R into the car and go back to my parents house. I'm thankful we're always welcome back at their place when we're having a bathroom crisis, haha.

R and I ended up staying over the entire next day and the following night as well in order to let N recover. He even took Saturday (his busiest day!) off of work because of how sick he felt. When N takes off work you KNOW something is seriously wrong. Luckily he was feeling much better yesterday and we came home. One day we'll have more than one bathroom and things will be a lot easier. Or at least that's what I keep telling myself. ;)

Hope you all had a wonderfully wicked Halloween!