Christmas Time Lessons

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When I was in 5th grade, Christmas was looking pretty much like hell. My mother was dying of cancer, bills were abundant, and my parents were miserable.

My parents friends and co-workers got together and bought us presents, all of us, dressed someone up as Santa Claus and showed up at our house one night. That was looking like a really hard Christmas, and thanks to the goodness of our community, our last Christmas with my mom was great! I remember tearing through presents, while my mom sobbed with happiness. As I got older, every year I’ve reflected on it and felt blessed.

A month ago, my ex left. When he left, he took things I’m still discovering are gone. I came home to an empty house, with a beat up couch, the freezer, 2 plates and some glasses left. I was given one month to get a replacement for the couch and freezer on top of trying to figure out how to afford pots and pans, lamps, tables, plates, utensils.. the list goes on.  I had to figure out how to replace stuff I had taken for granted since my first apartment.. then pay my ex’s portion of the bills he flaked on. It honestly looked like Christmas was out of the question. My heart broke, not just because I was betrayed, but because it looked like I wouldn’t be able to give my daughter a decent home AND Christmas presents.

So after I cleaned up the mess he left the night I got back home, I put Ashley to bed and sat on my kitchen floor and tried to figure out what I was going to do.

In the month since, I’ve found out horrible things about my ex, heartbreaking things, it’s been rough facing them, but this whole time? My family, friends, even people I haven’t seen in years, even people I’ve never met in person have rallied around Noodle and I. From couches to tables, to plates and silverware, pots and pans to hand towels started arriving or being dropped off. Books and pens, more cards than I can count. So while I covered bills, people who care about us covered what I needed, provided support and an ear. More recently.. presents. Noodle has received presents from family I haven’t seen in forever, and dear friends, I’ve gotten a few too. Hand delivered, fed exed, and left on my doorstep. I had managed to use what little money I had saved to get stocking stuffers and a few small things, but friends chipped in so I could pick out a few more.

A month ago I felt lost. I was worried, in tears and scared. Almost two decades after family and friends took care of my family the first time, it happened again.

The best part of everything that has happened? In one month, I went from feeling so incredibly sad and alone, to knowing I’m far from alone. In one month I learned how much people care for Noodle and I. I was lucky enough to watch a community rally behind us and stand with us, not once but twice. I am lucky enough to know, that while things will be rough for a little while, I know that we’ll be okay. I know that I have friends, that we’re not alone. I went from dreading Christmas to looking forward to it.

I think I learned the best Christmas lesson, twice. The world may be a scary place, but there are a lot of good people left. Knowing this, is the best Christmas present I could ask for.

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“You’d rather whine and cry about your Crohns…”

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As pretty much anyone who reads this blog knows, I have Crohns Disease. I have been diagnosed for 6 years, sick for 7 (got sick the day after my daughter was born). There is a brief description of it, but if you do a quick google search for “Crohns Disease Forums” or “Crohns Disease Blogs”, you’ll find some more. Crohns Disease is one of many considered an “Invisible Illness”, part of the IBD family along side Ulcerative Colitis. A lot of the time, someone with Crohns looks pretty healthy, accompanied by “you’re so thin, you look great”! That’s because Crohns Disease is internal, you won’t see any gaping flesh wounds or casts around an apendage. It’s all our insides trying beat us up.

It’s thought to be an auto-immune disease. Frankly, our immune system decides that it hates our literal guts and starts attacking. The outcome is severe inflammation which leads to ulcers, fistulas, bleeding, malnutrition, severe pain and a host of numerous other symptoms, some are life threatening. There is no cure as of now, so those of us with IBD are stuck on long term medications, most of which have some very un-friendly side effects. The problem is, is that because there is no cure, the best we can hope for is “remission”. Remission doesn’t mean that the disease has gone away, but that there are no current symptoms. Some people are lucky and find a drug that works for decades, many of us aren’t so much. So that leaves us with chronic pain and symptoms that aren’t so easy to talk about.

I use my writing as a way to vent about what I have to deal with, it’s one of the only ways I can think of. I figure, if I open my mouth and tell people what I (and other people) deal with living with a life long disease, it’ll give someone who needs someone to relate to a hand. Maybe if I open my mouth and share my story, or tell people when I’m having a bad day, maybe it will give someone else the courage to stand up and say “Hey! I feel really sick! I need support!”.

It really is hard though, for many reasons. I know one of the biggest reasons is that I don’t want to sound like a complainer. 90% of the time, I’m in pain, and in the bare minimum, I’m uncomfortable, yet to most who ask me I’ll tell you I’m fine. If you feel like crap every day, and say so, who is really going to believe you? Who is going to want to listen to you complain day in and day out, regardless of whether or not that’s your daily life? So I shut my mouth. It took *years* for me to start telling people that I don’t feel good. Even now, 7 years after getting sick, I still only tell people I’m having a rough day if I’m feeling *really* bad. Even then it’s confined to the internet or to a close few friends or my coworkers. When you’re sick a lot of the time, your worst fear is becoming a burden on your family or stressing them out. I used to be terrified of that, I did. I still don’t tell my own Dad when I’m feeling really sick or yucky, just because I don’t want to worry him. I don’t want to inconvenience my family, so I keep my mouth shut and deal with it. The only times I’ve asked for help is with the handful of hospitalizations, where I had my Dad watch my daughter, so she wouldn’t have to stay with me. Even then I felt horrible, even though I know I shouldn’t and that my family (at least my parents anyway) will always be there for me.

The downfall? If we don’t open up to each other, to our friends and family, we isolate ourselves. We end up suffering in silence and alone. If we don’t say something, anything about how we’re feeling, no one will know what we’re going through. How can one gain support if we keep our mouths shut? It’s the most horrible thing to be in pain and feel like your left all alone to deal with it, day in and day out. No one should have to deal with it, regardless of the condition.

However, as I learned today during a fight with a family member, it really does backfire. Sometimes, even when you just tell your family, and only when you need to, when you post online, just to get some kind of feeling that someone cares… it still will bite you in the ass. (haha, pun intended)

So today, while fighting about something completely unrelated, my own family member told me all about “what I’m putting my family through” because of my Crohns. Mostly because I opted out of a major life changing surgery (on the advice of a surgeon I’ve seen). “You’d rather whine about your Crohns, about how hard your life is…. (insert insults about me never finishing college – accounting is not my thing – and working in the stone industry) … Stop whining about how hard your Crohns is when you don’t have the nerve to get the surgery that you need (or don’t need, but she never asked about that). You’d rather put your family through the stress of scrambling to take care of your daughter.”
So let me go on the defense here. While we’re fighting about life choices she *MADE*, I get shit thrown in my face about a disease I have no choice about? I get shit because I made an educated decision with the help of my SURGEON to not have surgery yet? Put my family through the stress of scrambling to take care of my daughter? Excuse me? I’ve been hospitalized 5 times in 7 years, not too bad. Once when I first got diagnosed, and the last time being for the new inflammation… which has absolutely nothing to do with the surgery I had discussed 2 years ago with my surgeon (again, she would know if she asked). Yes, I most likely inconvenienced my family, but you know what? That’s what family is there for. To take care of each other, especially when one is sick. This family member wouldn’t know about that, since she stepped in for a sleep over 3 times since I’ve been sick. That’s besides the point though.

That attempt to shame me for something I have no choice over is why we keep our mouths shut. I don’t say a whole lot about how I’m feeling, I’m most active online for awareness, and yet I’m still “whining” about how hard my Crohns is? I’m (not) sorry that I told someone about the multiple obstructions I’ve had, or the fistula I had, maybe I shouldn’t have (definitely should have) told someone that I’m in a lot of pain and not in the mood to go out the bar. I certainly should never (most definitely) have said “Hey family, I’m hospitalized because my disease has stopped responding to medication and I have to try a new drug.” I should have never said “Dad, I’m scared..” because obviously said family member thinks that’s whining.

THAT is exactly why I open my mouth. Why I post on my blog about my IBD, why I spread awareness in anyway I can! The shame that she attempted to pin on me for something completely out of my control and most definitely not my choice. No one with a Chronic Illness, whether it be IBD, Lupus, MS, Fibro or anything should have to feel alone, none of us should have to feel like we have to suffer in silence.

So you know what my fellow IBDers, my spoonies, and my friends. I’m going to go all high school on you for a second. FUCK the HATERS. Tell someone, tell someone you’re sick. Tell someone you hurt! Tell someone if you need support! You need it! You most definitely DESERVE IT. Anyone who ever tries to tell you that you complain too much, or whine, or are inconveniencing them, don’t deserve your time much less your love. No one has the right to shame you for how you feel or any medical decision you make regarding *your* disease. Stand up! SAY SOMETHING! No one will know unless we open our mouths.

We don’t have to suffer alone, and those who think we should, aren’t worth the breath they use to speak.  Like my 7 year old says “Mama, I love you no matter what, even if your sick or if your grumpy.”

 

Sidenote:  I wasn’t originally going to post direct quotes from the fight I had, but the more and more I thought about it, the more and more I wanted to write this blog.  What my family member said to me is the very embodiment of why many of us don’t complain when we feel bad or sick.  I want people out there to know that yes some people are shitty, but not everyone, and we all deserve support.  So please pass around, and more importantly, be there for each other.  We’ve got to be honest about our lives, and our pain, and in the meantime, in the face of people like I had to deal with earlier, we’ve got to be here to support each other.

Pay it Forward: More Than a Decade Overdue

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When I was a kid, my mother was diagnosed with cancer.  Our family struggled and not just financially.  My dad was saddled with taking care of a sick wife and two daughters.  I remember a lot of stress and a lot of tears.  I remember being shuttled around and a lot of prayers.

The anniversary of my mother’s passing is tomorrow.  I was in 5th grade at the time, my sister in 3rd, and was too angry at the world to see things clearly.  All I knew is that my mom was sick, and then my mom was gone.  I spent years being angry, and admittedly still am sometimes.  Death is hard on anyone.

Now that I’ve gotten older and more than a handful of years has passed, the bitterness and anger have receded.  Of course I still have many painful memories from the last final months, but now I can see all the good too.

You can imagine trying to raise two daughters, take care of a sick wife, and then attempting to pay medical bills.  It wasn’t pretty.  Looking back I remember how many family’s invited us over to play, so my father could get some time to himself.  I remember how many times people brought over food and basics just to help out.  My mother’s friend even arranged a fundraiser for my mother’s treatment. The best memory I have?  Christmas.

It was my mother’s last Christmas.  I don’t know what my parents had planned, but I know the neighborhood had been up to something.  To this day, I don’t know who, or even how many families contributed.  Regardless, our neighborhood and my parents friends, gave us Christmas.  Santa showed up, just knocked on the door.  He gave us all presents, every one of us, and made Christmas more of a reality for my sister and I.  I remember opening presents, and looking up to see my mother crying.  I couldn’t figure out why, but I know now.

People I knew and people I didn’t know rallied around my family, they helped us through the hard times, and helped us continue on with life afterwards.  They fed us, watched us kids, and gave us a holiday I couldn’t even imagine.  So now, all these years later, I miss my mother, but I am reminded that there are very good people out there.  Good people who want to help out.

So for the past few months, I’ve been collecting clothing and other random goods.  I’ve been storing them and giving them away to people I know need them.  No big deal.  You know, the mom who takes care of her children but has nothing left for herself.  The friend who needs an extra hand up, but can’t ask.  That’s just how it worked out.

Then all of a sudden, a coworker of mine donated a ton of clothing, among other things.  It started piling up.  So I asked my daughters daycare to let me know if there’s a family that’s having a rough time.  Then another friend dropped off a bag, which is destined to be delivered to my old church for a family who lost their income.

I kept thinking about how to get these things to people who truly need them.  People who need a hand up for whatever reason.  God knows I can’t do it alone, not with my own body rebelling against me again.  So I asked around, and some people volunteered to help out.  Some people volunteered donations.  Some, talent.  So this is turning into something.  Something good.

I think what I want to see come out of this is cutting out the middle man.  I don’t want to charge people for help, I just want to help.  I don’t want to get anything out of it, but knowing that someones day is a bit easier.  I want to help make a better community, and in turn, push others to want to improve the world around them.  I want to see something come out of this.

There is a lot to be ironed out, but with my friend Kyle, and everyone else who is coming out of the woodwork, I think we can do something great.

We’re starting with clothes and canned goods.  Of course anything goes.  I’d like to work directly with people instead of through a company or what have you, keeping it small for now.  I’d eventually like to move outwards and help with repairs or just general work, but we’ll get to that in time.

So for now, I need ideas.  I need volunteers.  I need luck.

Here’s to starting something good, something that will improve the world around me!

Keep it real, keep it moving!