Crohns & Colitis Awareness Week (December 1-7th)

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More than a decade ago I was diagnosed with Crohns Disease. I had first gotten sick almost a year earlier, unfortunately my early doctors did not think to check for Crohns. It wasn’t until I had lost just under 100lbs and my life consisted of ERs, Fevers, Pain and my bed that I just happened to be in the right place at the right time.

I happened to go to a specific ER, where a group of GIs, one of which has devoted a significant portion of his life to studying IBD. It took one look at my chart and medical history for him to look at me and say “I think you have Crohns Disease”.

When I first became sick, I had only heard “Crohns Disease” once as a good friend of mine’s mother had it. I didn’t know that there were multiple options for treatment, I didn’t know the complications, I didn’t know anything. The following years were lonely. I found out another friend of mine had Ulcerative Colitis (same family of IBD) (who ended up helping me with my daughter way more than she had to prior to my diagnosis) and met another friend with Crohns. It was still odd talking about it.

There wasn’t medication commercials on the TV, Facebook wasn’t public yet (or popular until later) so instant support groups were out, I had no idea that so many people had the disease and were suffering right along side of me. To make it worse, my then husband and my family didn’t quite understand that there was so much more to it than a “bathroom disease”. No one around me understood the pain, urgency, fatigue, nor the side effects from my medications. I looked healthy enough, and at size 0, my friends were envious.

Check out Noodles face! Note: this is after I got sick, and before my diagnosis.

The first few years that I was diagnosed were the most lonely I had ever experienced. I had so much shame about a disease a couldn’t control. I just dealt with it as my disease stabilized. Having a bowel disease wasn’t something you talked about at parties, and I even tried to hide it from my close friends (online).

A couple of years later I had developed severe inflammation again, it started turning into scar tissue in my small intestine and colon. I learned what a bowel obstruction was, and after the first few, it became near constant. I was in and out of the hospital monthly.

It seemed like all there was to my life was Crohns. That was it. Now that Facebook was more popular I leaned heavily on my online friends and found some support groups. Furthermore I said “Fuck it” and started being vocal about what I was going through.


Everyone online was bombarded with what I was going through. I started TELLING people I couldn’t deal with the symptoms, I started EXPLAINING what Crohns Disease really was. I’d post pictures from the hospital or from my infusions. Showing people what Crohns Disease was.

Then I started hearing from people. I found out my then boyfriend’s niece has IBD. I had people acknowledging that even though people with IBD didn’t look sick, they were.

I had support and I tried to share it with whomever needed it.

I eventually had a bowel resection a few years ago after so many bowel obstructions I lost count. Even after being in the first 50 in IL to try Entyvio. Luckily, I have only had minor problems since then.

I am technically in remission. My last blood draw showed elevated levels of inflammation, so we’re just watching and waiting. So unfortunately I’ve become complacent with this disease (and also focused on dealing with some other issues, IST & POTs) as well as quiet.

However, I’ve learned that being open with the world about my Crohns served a purpose. People remembered. I have talked to just under 60 people in the last two years because of Crohns. People who have the same symptoms, were being diagnosed or just diagnosed, people in the hospital, family members of Crohns patients. People who just needed questions answered, who needed to vent, who needed someone to understand. I’ve talked with friends, their family members, friend’s friends, and strangers who found me through my social media platforms. I will never ever mind, I remember how hard it was in the beginning, I remember how horrifying and lonely it can be. Worst of all, I remember not knowing anything or what was going to happen. So I will always be up to talk.

It occurred to me last night, that THAT is a benefit of the awareness week. The more people know, the more people available to talk.. the more people who might recognize the symptoms in themselves and loved ones and get a diagnosis. The more people might not feel alone or overwhelmed with what they’re facing. The more people talking about it, the further we get.

So Happy Crohns & Colitis Awareness Week and remember to keep talking! It’s more than a bathroom disease!

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Slow down there heart.

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I am exhausted, even though I slept a bit last night and had a nap it feels like I ran a marathon. My muscles in my shoulders and neck are tight, my chest hurts, and I have a lingering headache that thuds along with my heartbeat.

Why? My heart decided to take off running for no damned reason last night and continued through this morning. So instead of resting with a nice low heart rate, I was at 160bpm just sitting down.

It’s honestly frustrating and simply tiring. By this morning, standing up made me dizzy and nauseated. I am sick of it. However, I also know that my heart is a lot better than it used to be. I know I have more good days than bad, yet it still gets me down.

Either way, I have spent the entire day taking it easy. I’m starting to feel more like myself almost 24 hours later. Hopefully the entire weekend won’t be lost.

Healthy Realizations

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It’s okay to be angry.

It’s okay to be hurt.

It’s absolutely okay to not “get over it” in whatever acceptable time frame the person or people who wronged you claim.

I have a bit of a cold going on, so does my daughter. Between her coughing last night and my own sinus pressure, it was difficult to fall asleep and stay asleep. A snow storm blew in during the late hours, and with it, some gusty winds. So while laying in bed, trying to breathe through approximately 1/2 of a nostril, I listened to the wind whip through the copper wind-chime Jon and Noodle bought for me last year.

My mind wandered to how my old wind-chime had been stolen, then I thought about all of the tools in my shed that had been stolen too. I laid in my bed, desperately trying to think of anything else, only to feel that familiar rage burn in my chest.

I remembered texting the man who had stolen my things, asking him to at least bring back my wind-chime and shears. I remembered threatening to call the police, after all, he had stolen almost everything I had out of my house and I had done nothing. I remembered wanting to stand up for myself, everyone had asked me why I hadn’t done anything? Why I had just let him take my things? I had to stand up for myself.

I remembered the text back, of him threatening to come back and take my daughter’s bed. It had been gifted to us by his ex-sister in law. Her daughter had no use for it, so she had given it to my daughter, and he thought he was going to come take it back.

I had backed down, I don’t know why I believed him. I now know that the police would’ve taken my side over a sex offender who had just robbed a woman and her child blind.  I now know, that not only would he have been arrested, but I would’ve had a case in court, and that is what still bothers me, two years later.

Even last year, when I had him, his sister and his new girlfriend all threatening me via text message and Facebook chat (I had inadvertently outed him as a sex offender to his family, apparently he had chosen to hide that from them. Who knew that was a viable option? Opps.), all three of them had missed the point. They kept telling me to get over it, he wasn’t going to come back to me, all in between threats of violence and vandalism.

Some how, they all assumed that a registered sex offender was someone I wanted to be with. That a year later, after discovering the hundreds of hours logged on sex-hotlines, all of the craigslist ads and affairs, after him hurting not just me but my daughter that I wanted him back. I assume that all 3 of them didn’t know that I was in a relationship, had replaced all of the stuff he had stolen from me, and was happy knowing the true extent of what I had “lost”. I had gotten over that ridiculous relationship, and had thankfully started seeing a therapist to deal with the trauma from it and work through all of the gas-lighting and emotional abuse.

What was it that I was angry about a year later, and as it turns out two years later? It wasn’t all of the horrific issues from within his own head that he had heaped upon our relationship. Nope, I was and still am angry that he stole from me and my daughter. That he stole from us right before Christmas, and left us with nothing. I am angry that he stole from us, to give to his new girlfriend, and that she was not a good enough of a person to tell him to bring it back.

MOST IMPORTANTLY, what really bothers me, is that I wasn’t strong enough to stand up to him and protect myself, my daughter and my belongings from him. That is what truly bothers me. In all reality, it doesn’t pop in my head too often anymore, as time is healing that wound, but when it does, it’s a good reminder.

There are shitty people in this world, there are men and women who use and abuse people.  I have learned from that period of my life, and hopefully I can teach Noodle how to protect herself (in all aspects: physically, financially, living together and not) during a relationship and how to handle these situations as they come up. It’s not foolproof obviously, as no one can protect their children from everything, but I hope that she doesn’t make as many mistakes as I did.

It doesn’t matter what people say, especially the people that have wronged you. I was most certainly still angry a year after being robbed. Two years later, when reminded, I am still angry. It takes time, and you’re allowed to take as much time as you need. It doesn’t matter what you’re getting over, a relationship, a friendship, a crime, a life.. the human mind takes time to heal.

Also just because you’re reminded of a wreck of a human being, maybe a decade later, and get a twinge of anger, doesn’t mean you’re not over it either. It’s okay to recognize that someone was horrible to you and that it hurt you, that’s also human nature.

On a parting note, on the rare times that I am reminded of my stolen things one thing makes me chuckle. My copper wind-chime invokes memories of Jon and Noodle sitting around me waiting for me to open it, both with adorably dorky looks on their faces.  My ex-boyfriends current girlfriend told me my wind-chime was her very-favorite thing when I asked for it back. It makes me fuzzy inside to know that when it moves in the wind, she’ll be reminded that it was a gift from her boyfriend and my daughter to me.

Stolen gifts aren’t worth anything.

 

21 Years Long

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Twenty one years ago, I was Ashley’s age. I was in the 5th grade, I had long brown hair that my mother refused to let me cut, and I was even more of a dork that I am now. I still liked to read more than I liked to talk to people, and you could still find me hanging out with animals more than with my friends.

Today, in 2018, we had a pretty standard day. Jon and I had to work, and Noodle had to go to school. So the day started off with Jon getting to work, me having coffee in bed, and Noodle playing around with the cats. A pretty relaxed morning before I had to drop her off at school. She had a regular day at school, I had a regular day at work, and we both got home and are relaxing while Jon makes us stuffed mushrooms for dinner. Right now I’m writing, Ashley’s harassing my sister on Snapchat, and Jon’s listening to his videos while dinner is finishing up. It’s a decent day.

In 1997? It was a much different day. I had woken up in the early morning hours to use the bathroom, only to find out that my mother had fallen into a coma. I remember mumbling “uh okay” and going back to bed just to dwell on the fact that my mom had been too tired to sing her “good night” song to me before bed the night before. I had insisted my little sister go first.. trying to be a good older sister and all. A few hours later, I crawled out of bed to be informed my grandparents were coming to pick my sister and I up for the day. 

We spent the rest of the morning trying to be .. normal? I don’t think my brain quite understood what a coma was being in 5th grade and all. All I knew is that my mom was asleep and not waking up. It was pretty surreal, even when my grandparents encouraged me to crawl into bed with my mom and say goodbye. I remember laying there and praying to whatever god I believed in to let my mom be okay.

Because what 5th grader understands “terminal cancer”? 

I realized maybe 15 minutes later that she wasn’t going to be when my grandmother started describing her version of heaven once we got into her car. 

I don’t remember the rest of that day from 21 years ago. 

… 

21 years have past. Each year that passes I reflect, I remember, and I learn. This year I think is a bit special to me since Ashley and I are the same age. She’s the age I was when I lost my mom.. so this year it just hits a little closer to my heart. So this year? I am grateful for the very simple things. 21 years ago, I was exactly her age, in exactly her grade, and had *just* lost my mother. I was starting on a new, seemingly horrific part of my life. 

Today? I’m sitting next to my own daughter, listening to her send her screeching raptor noises over snap chat to my unsuspecting sister and cracking up. We may not have done anything super fun today, or anything she’ll remember in 21 years, but that’s okay with me. Considering what I remember 21 years ago? I’ll take it. I’m grateful for the simple things, and how lucky I  really am.

 

I miss you mom.

Take a Deep Breath – It’s 2018

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Happy New Years! It’s already 2018, I can’t believe how fast this last year flew by. It seems like it was just Christmas 2016.. and then I blinked and it was Spring 2017.. and then I blinked again and it was Summer and Noodles birthday.. then I blinked again and it was New Years.

Time really got away from me, that’s for sure. I remember being a little girl, even younger than Noodle is now, and it seemed like time simply crawled. It took forever for a week to pass, much less for a month to pass, or god forbid a birthday or a holiday to arrive. Summers seemed to last forever, almost to the point where I looked forward to school at the end of August. Now? I don’t know how, but time just seems to slip right through my fingers.

I am glad it’s a new year though, 2017 was a rough one, it really was. I mean, I guess they all have been, at least for the last decade or so. We had some issues with Jon’s ex, I had some health issues (when do I not?) and Jon was unemployed for a bit while he searched for a job that was the right fit. It was definitely a bumpy road. Towards the end of the year it smoothed out a little bit though, enough to give me hope for this year.

So I have a new specialist now, a neurologist who studies autonomic disorders. I went and had all of the autonomic testing run right before Christmas, and it turns out that the majority of my symptoms are because of autonomic neuropathy. Almost everything can be related to it: Crohns symptoms (even though I’m near-remission), headaches & migraines, tachycardia/POTS, insomnia, tingling & numbness, you name it and it can be tied to it. Pretty interesting actually. He’s leaning more towards it being kicked off because of my Crohns or it being a genetic thing I got from my mom. It’s an answer, and just having an answer makes me feel a bit better. Now to start the roundabout of meds (again) to try and put the brakes on and slow down my heart.

Jon found a new management job that he likes quite a bit too. Very similar hours to mine which really rocks. His previous job was almost like a swing shift between third and first, so it was a bit odd with me working full first shift. He seems to be enjoying the challenge, and it’s a load off of my shoulders to have two incomes in the household again. It was definitely hard on me to support the house on top of my health issues (because of course, when it rains, it pours). Just having him working for the past handful of weeks has lifted a lot of the stress off.

Noodle is doing great, she’s shot up like a weed over this last year. I swear, she looks like a teenager already. Sometimes when she and I sit down and talk, she blows me away with how smart she is. She’s definitely got an old soul, she’s a brilliant, caring young girl, that I’m proud to say is my own.

On that note.. she’s also mastered her “metal scream”.. and really enjoys alternating screaming her chicken nugget song and making her pterodactyl sound and scaring the ever living crap out of me.

She definitely an interesting child, and I wouldn’t trade her for the world. I can’t believe she’s almost done with 5th grade, it really blows my mind how fast time has flown by. I love my little nerdling.

Beyond all that, it’s the same shit, same struggle, same work, same house. Not a whole lot has changed. Life is always a fight, but I’ve learned from the past few years to surround myself with good people and that is what makes it worth living. I’ve got someone I can’t stand that I can’t avoid in my work-life, but beyond that I love the majority of the people I work with, both in the office and out.. so that makes the office that much more enjoyable. I’ve got my beer-girlfriend, a good boyfriend, and great kid. Life is good despite the everyday shit. Huzzah.

Fatigue & Stfu

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I am exhausted, I feel like I haven’t slept in days. It’s reminiscent of my rambunctious teenage years, where I’d go out drinking cheap beer and staying up all night, but still some how make it to work the next morning and survive.  That’s what it feels like anyway, even though I slept almost 24 hours since Saturday Night.

My eyes burn, my head is woozy, my muscles feel like I just got done running a marathon (add in that my fatass doesn’t run). I’m so tired, so out of it, than when I went to stand up earlier at work, I almost blacked out. (BP dropped too fast) Almost everyone I have seen or talked to today, in and out of work, asked me if I was okay. Apparently I look like death despite my jet black winged eyeliner.

This is the worst my fatigue has been in a decade, since I was first sick with (undiagnosed) Crohn’s Disease. I’m usually a trooper when it comes to toughing it out, coping, and getting through work, but it was enough that I called off work yesterday. It’s just rough. I’m trying to cover everything, you know, up my teas, oils, supplements, and eating, all the way to getting enough sunlight. It’s a task just to get out of bed these past few days, not because of the pain, but because my lack of energy. I can deal with the pain, just not having the energy to sit up in bed is what’s kicking my ass. I’ll either figure it out, or it’ll eventually pass, but… I’m having a hard time.

I don’t particularly like bringing attention to myself at work when I’m sick either. It’s really nice when people ask how I am, but I get really aggravated when it’s followed up with a typical “I know how you feel, I had…” statement. One girl at work really is bad at it, and I’ve been trying for years at this point to not snap at her. This morning it went like this:

Her: “How are you feeling?” Me: Not great.. Her: “Oh, I know how you feel! I’ve been tired lately and this weather has been giving me a headache!!”.

I smile, and go back to work, but in my head I just scream “a booze headache and lack of sleep isn’t the same as being sick for a decade!” The worst is when the other girl at the office says “Well, if you feel that bad, just go home!” I’m sorry, I can’t. If I went home every time I felt like shit, I’d maybe make it to the office once a week, I have to support myself, I don’t have any other choice.

Yes, it’s a bit of a pity party, but I’m tired of it. I’m not going to say anything nasty, but you bet that I’m strangling them in my head when I’m smiling on the outside.

I’m just frustrated.

 

I hope I start feeling more like myself soon.

 

No Respect

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Disrespect

One of the things I try to really get into my daughter’s brain is to respect people, at least enough to be civil. It doesn’t matter if you don’t like them, don’t agree with them, or whatever, unless they are disrespectful to you.. BE CIVIL.

So far she seems to get it. I’m pretty sure that’s a thing that most parents try to teach, but it’s pretty apparent with my generation, and the half generation before me, it didn’t stick.

For the past year, I’ve been dealing with someone who is for lack of better words.. a bitch. Which I get, I mean, I’m not the most friendly person ever. However, that is something I’ve been working on for a handful of years.

I’ve been forcing myself to be nice, respectful and trying my best to have patience. I still get the odd ball complaint, usually about something I’ve written via email, message, facebook post or whatever, but not nearly as much as I used to.

So this chick, has been disrespectful from day one. She’ll ask me a question and then get huffy at the answer. She’ll snap at me if I ask for something, and just generally cop an attitude with me for existing. It honestly reminds me of the high school cliques. One day it’s fine, next day, it’s nasty looks and whispering behind my back. Just straight up disrespectful. (I still can’t get over the irony of ME trying to be nicer.)

The sad part is, even though I’ve said something about it, several times now, nothing changes. My brain just went into acceptance mode, you know.. I just got used to it.

Until it really got on my nerves the other day, and I snapped back. Oh lord, did she rain hellfire down on me, you woulda figured I hit her car with a baseball bat with the way she reacted. It really just proved what I had already known, she’s used to pushing people around and bending the rules to make it work for her.

No. Fucking. Thank. You.

If it was just some bitch working at my gas station or something, that would be one thing, but someone I have to talk to every single day? Not so much. If she doesn’t want to change her behavior, and no one else wants to correct her, then I’m at least going to stand up for myself.

No one should have to deal with disrespect on a daily basis, much less one single occurrence. It’s enough. Time to force some changes.