26 Days Later

My barium swallow is tomorrow at 7:30am. As a person who is regularly unable to fall asleep before 5am this is going to be really interesting.

Since I last wrote my recovery has been progressing slowly but surely. I'm no longer experiencing dumping symptoms, but food is also no longer traveling through my digestive system without help. I'm still nauseous all the time. This is the way things were pre-surgery so I'm hoping that they don't stay like this. If they do... I don't know. I suppose I'll be able to call these operations total failures. I don't want to, but I don't like what my body is telling me.

Things have been hard. Hard is an understatement.

For the greater part of every day I find myself wondering if it'd be possible to pinch myself and wake up from this nightmare. I don't even try to lie to people who ask me how I'm doing. I'm doing terrible, thanks for asking.

 

I thought that time- and the ability to eat a wider range of liquids- would abate my cravings for solid food, but that hasn't been the case. I think about eating all the time. I dream about it. I would do terrible things for the ability to eat a sandwich right now. All I want in life is a sandwich. After all of this is over I don't think I'll ever eat soup again.

 

I have been tolerating slightly chunkier soups. Other forays into soft foods- such as thin cheese slices and pasta- have not been as successful. I've also been having issues with cold drinks, which is is common, but difficult because drinking anything that isn't ice cold makes me nauseous. This means I also haven't been drinking enough, and my poor body is having a really hard time keeping up.

Have you ever almost passed out inside a Target during a pre-Christmas rush? It's not a pleasant feeling. Similarly, I almost fell over dead at my grandparent's house on Christmas because I had done too much on too little during the day.

My weight loss has continued and I'm officially at 17lbs, though I believe some of that may be my usual pre-period bloat. Interestingly, my period is exactly a week late today but there is no chance that I'm pregnant. I think that's really saying something about how damn undernourished I am right now.

In other news my stimulator has been turned off since before surgery, so when I can finally get in to get it turned back on I'll be able to easily see if it's really helping me or not. Wouldn't it just be a kicker if it too wasn't helping me at all? What a year!

But to end on a happier note; we had a wonderful holiday, N continues to be my rock, and R the light of my life.

How sweet is this?

I hope you all had a wonderful holiday as well!

Recovery

After a week of low-calorie clear liquids, the first thing I wanted to do when I got home from the hospital was have a giant bowl of creamy soup and a milkshake. Unfortunately this plan did not work out very well. I'm not sure if it's dairy, sugar, or just the fact that I'm putting anything in my GI system, but eating or drinking anything (except for water and green tea) almost immediately makes me feel awful. It's possible that I have in fact developed dumping syndrome, but my digestive system is still healing so a lot of wacky things might be happening now that might now happen in the future. I refuse to have any hope though.

I'm so burned out on broth and jello that I've been mostly drinking smoothies lately- with varying success. My food intake has been averaging one smoothie a day plus water (plus iced tea when someone brings me it) and therefore I have very little energy/ motivation/ will to live. I need to pick up some instant breakfast shakes (I refuse to ever have Atkins, Ensure, or Boost ever again) and see if I can get some calories that way. I've lost 10lbs since surgery and trust me, this is the worst diet ever. I would gain many, many pounds in exchange for a normal digestive system.

I'm not sure if the fact that I literally can't eat real food makes things psychologically harder or easier than when I was on the pre-op diet. I'm actually leaning towards harder because I know that no matter how hungry I get, there are very few things I can actually ingest. A few nights ago I got desperate and ate a chip. I made sure to ground it into mush in my mouth before swallowing it, thinking that was good enough and IT WAS THE WORST MISTAKE OF MY LIFE. (Only slight hyperbole.)

I believe that the chip mush got stuck in my wrap (the bottom part of my esophagus that they wrapped my stomach around) and the pain was horrifying. I actually considered going to the hospital. The best way to describe it is someone wildly stabbing you in the stomach over and over, in really intense waves. What my body really wanted to do was vomit the chip mush back up, but because this surgery has made my body unable to vomit all I could do was gag and dry heave all the while my mouth was watering profusely. I had done a stupid, bad thing and I paid for it dearly. I do not want to make that mistake every again.

Unfortunately I think the chip incident has damaged my wrap a little, and set my healing process behind. I've had reflux the past two nights which has been really concerning. And then last night I tried to eat very mushy (and very thoroughly chewed) scrambled eggs and I was hit with the same stabbing pains. Luckily I didn't start gagging and heaving again. The eggs tasted so good but I just couldn't get them down. I gave the plate back to N crying. I've been doing a lot of crying lately.

I've been asking myself again and again if it's been worth it. I got these surgeries in order to be able to eat without nausea, bloating, and constipation. But right now I can't eat at all without some nausea, a lot of pain, and the opposite of bowel issues. The difference now is that I physically can't eat things that make me suffer (to an extent, i.e. chipgate 2014)- something that I used to do every day.

I have a long, long couple of months ahead of me and if I don't stab anybody at the various Christmas dinners we attend it's really going to be a Christmas miracle. Be thankful if your body has the ability to eat, digest, and expel food properly. I wasn't. And you never know what you have until it's gone.

Operation Week

From Friday the 28th to Wednesday the 3rd I consumed a TOTAL of less than 1,600 calories (I was keeping track with My Fitness Pal.) Obviously this meant I had no energy and felt constantly as if I was about to fall over dead. I was dragging prettyyy hard by Wednesday and just barely got R to preschool and then myself to a pre-op appointment where my doctor turned off my stimulator for surgery.

Thursday the 4th was my surgery. I wasn't allowed to eat anything after midnight but I wasn't really hungry because I was running on adrenaline. I checked into the hospital at 11am and my surgery was at 1pm. I believe I got into recovery around 4, but everything post-surgery was kind of a blur. I woke up in a lot of pain and had a little bit of nausea which worried me because this surgery means I can't throw up, and I'd have been in a whole mess of trouble if my body had tried. I wanted to avoid the recovery nurses having to give me painkillers, but about half an hour into waking up I was involuntarily moaning in pain so they blessedly gave me a couple doses of fentanyl (great stuff) while they waited for a room to open up.

When I got up to my post-op room N was there (bless him) and I was in a lot of pain again so the nurses started giving me dilaudid (not as great) and IV phenegran (painful but knocked me out.) I was scheduled for a barium swallow in the morning to make sure my pylorus incision wasn't leaking, so they wouldn't let me have anything other than ice chips. I wasn't that hungry anyway, but I felt like I was dying of thirst. They almost took my ice chips away and I was like, over my dead body. I slept for the majority of that evening/ night and into the morning.

On Friday morning they still would only let me have ice chips (so it had been a full week since I had really eaten) and my barium swallow kept getting pushed back. The nurses wanted me to start walking the halls to ease my shoulder pain from the gas they use in laparoscopic surgery, but I was running on literally, LITERALLY nothing so there was no way that was going to happen.

They finally wheeled me down to the x-ray room around 1, and I had to wait outside for another hour because the woman who had gone before me threw up everywhere. Yeah, barium tastes like urine flavored car fluid. It is AWFUL. But this time I didn't ugly cry and managed to get through the whole test. The test came back showing a significant motility delay (duh) but it showed that my pylorplasty wasn't leaking which meant I had the ok to go home. Unfortunately my oxygen kept dipping and I was in a metric fuckton of pain, so I decided to stay one more night.

On Saturday morning- despite not getting up to walk once- I managed to get out of the hospital which was a blessing and a curse. I missed my own bed and no longer wanted a giant needled shoved in my arm (and a giant drainage tube stuck in my side- that was interesting) but I was going to miss IV pain meds and friendly nurses. Seriously, bless nurses. All of them. What a job. I love you.

I laid in bed for the rest of the weekend, and tried not to take many painkillers. My shoulders were killing me, and my abdomen was very sore. As the week has gone by I've been moving around more and more, and I feel like my body- aside from my digestive track- has healed from the surgery. Externally it wasn't as difficult a surgery as my last one, but internally it was much more complicated and thus my recovery has been a lot more complicated. More on that in the next post!

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):

*

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

*

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.

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.

*

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.

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.

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!

Life Lately

It's been awhile since I've written a life/ health update and a lot has happened since the last time I wrote!

Mental health wise things are still up and down- though mostly down. I ended up switching medications from Prozac to Wellbutrin and it's taken awhile for most of the strange side effects I got from the Prozac to leave me. I'm not doing terribly well and I think it's finally time to admit that my OCD really has the best of me and that I need to try cognitive behavioral therapy. Finding a therapist has been really difficult and I don't really have a lot of time during the week to actually go to therapy. I know I need to make it a priority but uggh.

I've been in physical therapy for my jaw and pelvic floor for over a month now and I'm really happy with it. I absolutely adore my therapist and I wish I could go to her everyday! She's been massaging me (my face/ head/ neck) and doing "dry needling" which isn't very fun but helps a lot. She recommended I go to a special dentist who does botox treatments for TMJD and so I had that done last week. The dentist botoxed my temporalis (head) and masseter (jaw) muscles and he said it can take up to a week to kick in so I'm really hoping it helps relax those muscles. They actually didn't have enough botox for my treatment in the office during my appointment, so I'm going back this Wednesday to finish it. Since botox isn't FDA approved for treatment of these muscles (not because it's dangerous but because getting FDA approval costs a bajillion dollars) my insurance wouldn't pay a dime. I had to put it on my credit card which I was *so close* to paying off but if this helps me then every penny will be worth it. Knock on wood!

My stomach has been giving me ups and downs but I'm still doing much better than I was before my surgery. My reflux is still horrible and uncontrollable but I'm going to wait to address that for awhile.

More interestingly, my general practitioner believes that a lot of the things I suffer from might stem from an autonomic nervous system disorder. She said she'd refer me to a neurologist (a specialist I've never seen before!) so we'll see what happens there. From what I've read there aren't really any treatments except symptom management for these types of disorders, but I'd feel a lot better if I knew my issues stemmed from a single cause instead of having a bunch of random conditions. My thyroid levels are decent and apparently I'm allergic to sesame seeds?

My GP also did a rheumatoid (blood) panel to see if my hand pain stems from arthritis. Depending on the results I might have to see a rheumatologist (another specialist I've never seen before!) and while I really want my results to be fine, I also want to know what the source of my pain is.

I have so many doctors appointments that between them and R's school and dance schedule I really haven't had a lot of time for much! Especially with how horrible my fatigue has been. I have good days and bad days- a lot of bad days- but I'm trying to get by. Thankfully N is the best, most supportive husband in the world and he helps with everything. I'd be in big trouble without him.

Speaking of N, he went to a spine specialist for his back and it turns out that two of his lower back disks are compressed/ damaged and have arthritis. He got a cortisone shot and has been going to physical therapy as well. He learned in PT that he has very weak abdominal/ core muscles (the muscles that support your lower back) and that he needs to strengthen them. He hasn't been playing hockey anymore which has been good for his back but sad for him. When his abdominal muscles strengthen I think he will be able to return but I'm not sure he wants to risk it anymore. Either way it's  a bummer for sure but nowhere near as bad as we thought- thank goodness!

R is still loving preschool and dance class- and has loved her new tap class. I've volunteered at her preschool a few times and will be helping out with their Halloween party this week. After volunteering all I can say is thank goodness for preschool teachers. They are saints! I could never do that job in a million years! Here is how her school picture turned out...

If any of you remember my major mental meltdown/ overreaction regarding her dance pictures you'll know that these pictures went better than my wildest dreams. I needed to do a follow up to that post actually. You see I got her group pictures back and not only was she in both of them, she was also not the only little girl crying, and the vast majority of the girls had funny looks on their faces. Oh and if you're curious here's the video of how her dance recital turned out. We were so proud!

Till next time!

Countdown to Halloween Week 3: Costume Ideas/ Zombie Crawl Pictures

Well I had hoped that this week I'd be able to show you some of my progress on R's Halloween costume, but there really hasn't been much progress to document. So instead I'll show you some of the inspiration for what I'm going for, and we'll see how it all turns out in the end, haha!

For R's first Halloween she was a marshmallow Peep. It was one of the cutest costumes I had ever seen! This was before I had my DSLR camera so these pics were taken with a disposable. I wish I had better ones!

Luckily the costume was a little big so I was able to use them for the best Easter photo ever the following spring:

The next Halloween I had hopes of being crafty but turned to Etsy instead. I don't know where I saw the idea for this costume in order to search for it, but it was love at first sight (of the listing, haha.) She was cookies and milk!

Last year I didn't get any pictures for some reason, but during a decoration shopping stop at a Halloween store R found a Buzz Lightyear costume and HAD to have it. I could think of worse things she could be so I got it for her- along with a very cute Buzz Lightyear headband to add just a touch of girly flair. Of course we still got a lot of "your son is so cute!" but that doesn't bother me.

This year I asked R what she wanted to be and her response was "A GHOST LIKE oOoOoOohhh!" I don't know where she got that from but hey, I'll take it. So I immediately went to Pinterest (duh) and was inspired by the following:

Source

Source

Source

Source

I bought 20 yards of white tulle from fabric.com and have started to assemble a "tutu" dress similar to the first picture. However I'm not going to do the ghost face on the actual dress, I'm going to do R's makeup similar to the child in the bottom picture. It'll be cold here so she'll have on a white long sleeve shirt and pants and I'm trying to figure out how I'm going to do the top of the costume. I really like the cape idea, but I also love the bow idea. I am not good with fabric unless it means cutting tulle into tutus so we'll see how my vision plays out in reality.

TO BE CONTINUED!

Also, here are a couple pictures I snapped of R, my brother, and I at the Zombie Crawl this weekend. I couldn't find my camera so these are all phone shots, and I didn't get as many as I wanted because R was being shy but we still had a blast. Even if it made my cold 10x worse! (I've cut them since they're a bit *fake* gory!)

Fall Swag Swap!

Another year another awesome fall swag swap headed by Candra, Desiree, Shelli, and Erin!

This year I was partnered with Jenny from The Chronicles of We and our being matched up was destiny- she used to live only a few miles from me (actually in the area I grew up in) in suburban Colorado. Talk about a weird coincidence. I had an awesome time getting to know her and was amazed with some of the things we had in common! I can't wait to keep following her journey (she's building a lake house- hello, could that be any cooler?) and she did an AWESOME job picking my swag!

Countdown to Halloween Week 2: Our Indoor Decor

I've got one of those wonderful fall colds but I didn't want to miss out on this week's linkup so I'll show you the pictures I took a few days ago and leave the commentary for another time. Of course if you have any questions just ask! :)

We painted R's big girl room! FINALLY!

It's the most wonderful time of the year!

Well I've had my indoor decorations set up since the middle of September (no shame!) but as soon as October 1st hit I decided it was time to do the outdoors as well. I don't have as many outdoor decorations because they just don't last in our October weather, but I'm really happy with what I do have. However I have some pretty grand plans for the future...

 

In the years that we haven't had any flowers in our garden at this time I've transformed it into a mini graveyard. However our flowers are still going strong this year and I have no desire to till the garden until next spring so for now I'm accessorizing with my awesome skeleton flamingos. I bought these last year and used them as well, and I asked N if we could keep them up all year round (and I tried!) but he gave that the big "no way."

 

In the window I taped up a skeleton that I got at the Dollar Store last year and added the Beware of Dog sign that I bought after our garage was broken into. I don't think anybody truly needs to "beware" of Hank, who is scared of mice, but hopefully it will make a thief pause to think. On the other side of the window that isn't show in this pic is an arched black cat that I found at Goodwill last year.

 

My favorite decoration of all is our giant spider web and my beloved Shelob. Ok so she's a small excuse for the actual Shelob but for now I'm making due. I bought her at Target a few years back and I believe they still sell similar ones. I don't remember where I got the web but for being made out of plastic it's held up nicely for a few years now. I use a staple gun to attach it to the sides of the house and then tie it to the storm door as well. Because the storm door opens out it doesn't disturb the web when it's opened/ closed. I've also had that skeleton for awhile now and one day I'd like to get a full size one but this year this guy is just going to hang out on the hook at the top of our porch. I need to get a longer rope for him so it looks like he's more trapped in the web.

 

Although the flowers in my garden are going crazy my potted petunias weren't looking so hot. I decided it was time to clear them out and my empty pots seemed to grow some interesting new plants... ;) I got these fake severed parts at the Dollar Store a few years ago and we've used them as props at the Zombie Crawl. Reagan was 1 1/2 and teething at her first crawl so she walked around chewing on one of the hands. It was perfect.

(Yes she is wearing underwear in this picture.)

New this year is my Zombie Crossing sign! You can't tell from the pictures but it's sparkly which brings it up to 11. I got it at Michael's this year and let me say, their Halloween collection this year has been ON POINT whereas I'm a little disappointed with Target. I am avoiding Micahel's at all costs right now because we're on a budget and I told myself no more Halloween decorations but hopefully I can convince my mom to go there with me... ;) (You can also sort of see in this picture that there are purple lights wrapped around our bannister.)

In the future (where hopefully we have more time and money!) I want to do a full on Nightmare Before Christmas yard. I have some great pins on Pinterest right now just waiting for the day when my bank account- and N- gives me the go ahead.

A girl can dream right?! ONE DAY I PROMISE!!!

Chronically Awesome

I am an open book, I always have been, I always will be. My mom used to joke that I was the only teenager who told her too much about my life.

I've never had a problem with being open about my mental illness, even though I was taught that it was something to be ashamed of, something I should strive to hide. But sharing has helped me connect with people, and connecting with people reminds me that I don't struggle alone. And that has made a world of difference in my life.

But talking about my physical health is a lot more difficult for me. This blog has actually helped me be more open about it than I ever have in my life. Then again, me starting up this blog coincided with my Gastroparesis diagnosis and subsequent treatment, and it's all been too major not to mention.

For many years now I've struggled with Hashimoto's (autoimmune) Hypothyroidism, GERD/ Gastroparesis, a pelvic floor disorder, and a TMJ disorder that causes constant tension headaches. I also have pain and weakness in my wrists and fingers but I'm going to ignore that for as long as possible. ;) I've also had two sinus surgeries (a septoplasty and a turbinate reduction) and a tonsillectomy. Oh and at some point they took out my appendix too. There's also the hypersomina... oh the hypersomnia!

I had a physical last month, and my doctor (my general practitioner) told me "you have such a great attitude for someone who is so sick." And that struck me, because I never really saw myself as sick. At least not physically.

That's not to say I don't feel sick, I feel fucking TERRIBLE all the time, but I always attributed these issues to personal failings as opposed to actual diseases/ conditions. I'm nauseous all the time because I have no self control when it comes to food. My hair falls out because I don't get enough vitamins. My muscles are clenched all the time because I have an uptight personality. I'm tired all the time because I'm lazy.

Except, I'm nauseous because my vagus nerve is partially paralyzed and my stomach doesn't function properly (and I never feel worse than I do after eating veggies.) My hair falls out because I have autoimmune hypothyroidism (my vitamin levels are fine.) My muscles are clenched for god knows what reason but I can't control it (really I'm not that uptight!) And I'm tired all the time because all these goddamn diseases (the mental ones included!) zap my energy.

Of course, the tricky thing about all these diseases are that they're invisible. And to a lot of people, certain members of my family included, invisible means not real or easy to solve. It doesn't matter that my blood tests show erratic thyroid levels and high inflammatory markers, that a nuclear gastric emptying study showed a significant delay in stomach function, or that physical manipulation of my muscles/ joints have shown abnormality. When you look fine, you're supposed to act fine. And I try to, I really do.

But there's a reason why every room in my house is never clean at the same time, why the laundry piles up, and why I can't make dinner every night.

I'm chronically ill. In fact I have multiple chronic illnesses/ diseases. And I need to stop hating myself because of that.

When I say that I'm chronically ill I feel like a kid trying to join a club that she's not cool enough for. Or in this case, sick enough for. To be honest, I feel like a fraud. There are countless people out there who have it MUCH worse than I do- I am acutely aware of that. And I am endlessly thankful for the moderation of my illnesses and the pieces of me that are healthy.

But I hate myself for being sick, precisely because I can't admit to myself that I am sick. People say that you should never have excuses, but what does that even mean? What's the difference between an excuse and a explanation aside from unfair stigma. All my life I've believed in the "bootstraps" mantra to a certain extent, but everybody is only able to pull up their straps so much. Everybody is doing the best they can.

I am doing the best I can, and dammit that is going to be enough.

Life Lately...

I keep telling myself I'm going to set a time aside in my schedule specifically for blogging, and then it never happens. With preschool two days a week, dance two days a week, and countless doctor/ physical therapy appointments, any time I have on the computer is spent doing online work for my mom's friend- and now my mom too. Whoo-hoo for money!

My health has been up and down lately. My stomach hasn't been troubling me as much as it was earlier this year but it's a constant struggle. My mental health peaked for the few weeks after I started Prozac and has been deteriorating ever since. I've been struggling with anxiety, depression, and a total lack of motivation (which also explains why I haven't been around here as much.) I've also been having really severe tension headaches that aren't helped by Tylenol/ Advil and I realized they are tied to my TMJ issues. So I just started physical therapy for my jaw (and my pelvic floor too, so fun) in hopes that will eliminate the headaches. I had a jaw massage (outside and inside my mouth) last week and it was the most painful thing I've ever experienced. It was worse than childbirth- I almost passed out.

We also got some bad news regarding N's health. He was in an ATV accident about 5 years ago where he flipped an ATV and his lower back landed on a rock. He developed a MASSIVE hematoma and it went away but then came back when he was wrestling with his brother. His brother and sister drug him kicking and screaming to the ER (they were in Montana for his step-grandpa's funeral) but all they did was an x-ray which didn't show any damage. He's had lower back pain ever since and at times it's gotten so bad he can't walk. One night after hockey he literally crawled into the house on his hands and knees because he had hurt it so bad while doing a twisting motion. I drug him (again, kicking and screaming) to the Urgent Care clinic the next day and the doctor just wrote him a script for pain pills and sent us on our way.

The pain has been getting worse and more frequent so I made him go to my general practitioner. Within minutes of talking to my husband, the doctor set him up to get an MRI, and he had it done a few days later. We got a call just hours after the MRI saying that N has two slipped and one torn disk in his spine. He'll be seeing a specialist next week. We're really hoping that his issues can be healed without surgery. If he had to take time off work for surgery (and then be on light duty for however long after that) it would be financially catastrophic for us. He is guaranteed 40 hours of pay every week, but mechanics rely on their hours flagged (commission) so he makes at least 3 times what his guaranteed pay is every week. We wouldn't be able to live on that 40 hours, especially with the added healthcare costs.

But in better news R has been rocking it at school and dance. Although she's had some emotional hiccups at each she's really doing a great job. She LOVES preschool and I LOVE my 2 1/2 hours of free time twice a week. I've been really worried about her picking up school germs- especially with that super scary respiratory virus going around Colorado- but I'm trying to keep calm. She has to be around other kids at some point or another, right? Right?!

Hank has been doing well too! The orthopedic specialist vet we took him to only noticed some abnormal bone density around his shoulder but nothing to be super worried about. He's still limping a little bit but the activity restrictions are off and we've been able to start taking him to the dog park again- which rocks his world. I've also been able to take him on a few walks recently after purchasing a gentle leader head collar. He was so hard for me to walk before because he's so big, and I'm so weak. He isn't particularly naughty on a leash but any slight pull from him would yank my arm practically out of the socket. He hates the head collar but he's getting used to it and when he isn't freaking out when it's on he walks like a dream!

September is upon us which means my birthday is coming up (next Sunday!) which means that my indoor Halloween decorations are going up right after that. I am totally shameless. N hates I keep them up for so long but he's just a debbie downer. I LOVE Halloween and R has informed me she "wants to be a ghost like ooOOoohhHHhh" so I'll be trying to come up with a cute costume for her. I'm also looking forward to two different zombie crawls this year! Halloween is the only thing that perks me up about summer leaving. I get a special pain in my heart when the leaves start to change that doesn't feel better until the trees are fully leafed and green again.

Ah well. It's been a good summer even if I didn't get to do much of my bucket list. Until next summer!

R's First Day of Preschool

I just picked R up and that means we have officially completed our first week of preschool! I'll be honest, it feels a little surreal that she's old enough to be in preschool at all. It doesn't make me sad or nostalgic, but it does feel strange. Most of all, I LOVE IT, 2.5 hours of free time twice a week?! Heaven! But ask me how I feel when she picks up her first communicable disease. Let's just not think about that. ;)

For her first day I decided to hop on the Pinterest bandwagon (duh) and make her a little chalkboard sign. I found this great silver frame at Michael's when I was picking up a Silhouette Cameo (post for another time!) and when I saw it was buy one get one free I really couldn't say no. So we have one in pink too! Her adorable outfit is completely from Target- shoes, dress, and headband. Target has the cutest toddler clothes EVER.

She wouldn't be my child without a little attitude!

But I got some smiles!

 

Her preschool is at the same elementary school N went to when he was little!

When it was time for class to start I took her in, signed her in, and she sat down to play right away! She completely stopped paying attention to me and I wasn't sure whether I should try and say goodbye or just book it. I didn't want her to freak out at me just disappearing so I told her bye and didn't look back! Her teachers said she did perfect and she acted perfectly when I went to pick her up!

Today was a little different. She was a bit more nervous to enter the classroom and there was another little girl having a massive meltdown. The other girl's mother (grandmother?) left at the same time I did and the little girl's freak out triggered a freak out in Reagan. I could hear her screaming when I was outside the building but I knew that going back in would just make things worse and that she was in capable hands. When I went to pick her up her teacher said that she didn't stay upset for long and was fine as soon as the other little girl calmed down.

I had anticipated a massive meltdown from her the first day and I knew she was going to struggle a little sooner or later. This girl still has problems at dance class and she's been going to that for almost a year now! But it was a wonderful two days and I'm looking forward to many free afternoons filled with baby-free errands!