Connections

When I meet someone else who has Celiac Disease, I feel an instant connection.  I instantly feel less alone and feel free to talk about my life with my autoimmune disease.

It’s similar when I meet someone else with an autoimmune disease of any type.  You can talk about struggles and get to know what other people struggle with, help educate others about their disease and spread the word for awareness.

One such person is the daughter of my best friend, Shawna.  Her name is Courtney and Courtney has cystic fibrosis or CF.  According to the Mayo Clinic, “Cystic fibrosis is an inherited disorder that causes severe damage to the lungs and digestive system…But in people with cystic fibrosis, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the lungs and pancreas.”  In short, this disease makes it hard to breathe, breathing is necessary for life so this is a disease that can be life threatening, if not handled correctly.

Ever since I’ve known Courtney, she has tackled this disease head on.  She’s always had a smile on her face and had been an advocate for those that have CF and has been vocal about what the disease is and is always educating people.  Yes, she’s been in the hospital a few times in the past year and a half for “tune ups”, to get her lung function back where it needs to be.  She plays guitar and sings and doesn’t let this disease stop her from doing things she loves.

Courtney turns 16 tomorrow.  This is key because there are several people with CF that don’t make it into their 20’s.  Even less into their 30’s and, well, you get the picture.  Yes, treatments and, now, experimental drugs are helping life expectancy but with CF, the simplest things can trigger shortness of breath.  As a teenager, Courtney loves going to haunted houses.  This year I went with her and Shawna and the fog machines started affecting her ability to breathe.  Things that I wouldn’t think about if it wasn’t for Courtney.  And, as an advocate, she isn’t afraid to stand up for herself in cases like the haunted house or to make sure that a restaurant doesn’t allow smoking, and many other instances that I wouldn’t think about.

Speaking of experimental drugs, Courtney was one of the fortunate ones to be able to take this drug that is meant to keep her lung function where it’s at, giving her a longer life with the lungs she has and, hopefully, to not have to have a lung transplant for a long time or ever.

Why am I writing about another disease?  Because Courtney and I not only have autoimmune diseases (and both agree that they suck) but we also share a birthmonth.  Poor Shawna, having to deal with both of us and our birthday talk all December.

Two things as I end:  1)  The more we understand about other autoimmune diseases (Shawna and Courtney, please forgive me if I got info wrong!), the more we can help others and they can help us educate and advocate for Celiac Disease.  2)  I want to wish Courtney a very happy Sweet 16th birthday!  Here’s to many more, dear!

 

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You’re Ruining Everything

Most of my friends really get why I’m gluten free.  They know that eating anything with gluten can make me sick and sick is not where I want to be.  They really don’t want me to be there either, I’m a hot mess when I ingest gluten.  I start cramping up and then my tummy hates me and I end up either in the bathroom for long periods of time (I will let your imagination go and it probably would be accurate) or curled up on my bed because the stomach cramps are so horrible.  Women, just take the “that time of the month” cramps and ramp it up.  Men, imagine getting kicked hard in the you know where…and I’m pretty sure you know the pain I go through.

I still have people in my life that, from statements made, think I’m overreacting.  The other day I posted a story about there being a lot of gluten free restaurants in Italy on my personal Facebook profile.  I had a friend say “you people are ruining everything”.  Ruining everything?  How?  By being excited that I can go out and eat?

I wasn’t sure if this person was joking or not, it’s hard to tell via social media sometimes, so I made light of it and said that I wasn’t looking for a constitutional amendment and it was each restaurants right to have a gluten free menu or not.

I guess I’m still puzzled as to why “us people” are ruining things.  Anyone that isn’t gluten free can still get beer and get it at a fraction of what I pay for beer.  Anyone that isn’t gluten free can go anywhere and eat whatever they please.  I guess I don’t get it.  I’ve never said that I am going to make every restaurant have a separate kitchen for gluten free because it’s my right.  (It isn’t, don’t take that wrong).  And, even if a restaurant doesn’t have anything I can eat, I will still go there with my friends because I’m a social person.

Yes, I do get excited when I read that Europe is very gluten friendly and that, someday, when I get to go there I will be able to eat and eat well.  Better bring my stretchy pants!  And I do get excited when a new item hits the shelves and I can have egg rolls again.

The thing is that people really don’t know what they miss…until they can’t have it anymore.

I would challenge my friends that thing that gluten free is easy to go one week gluten free.  Read the labels, eliminate all wheat, barley and rye from your diet and see how “easy” it is…I’m sure you’d be more than surprised.

Warrior Dash 2015

This past weekend was one of the weekends that I always look forward to every year. It’s the weekend of the Warrior Dash which is held up at Copper Mountain here in Colorado. It is a 5K race mixed with an obstacle course and on the side of the mountain that is pretty rugged terrain.
I love this weekend for multiple reasons. First, it’s a challenge. Every year the race route has been about the same but they change it up with the obstacles. It is still hard no matter what! The second reason I love this weekend, is that I get to spend it with some dear friends of mine. Three of us have done this race for the past four years and then we brought others on along the way. It is a time for us to hang out, to work hard on the race and then relax and enjoy the company.

They also have pretty good gluten free good there. We ate at the Incline, a bar and grille at the resort. When I told the server I was Celiac, he was very knowledgeable and told me what I could and couldn’t have.  He even provided info like the fact that the fries were fried in with breaded items and explained what sides I could have.  They had gluten free buns so I jumped in and got a burger.  We then went to the Storm King Lounge for sushi. They had one roll that was gluten free, quite a disappointment as I was sure they had more gluten free rolls last year.  They did have an appetizer and dessert that were gluten free. It was good but I’m used to more variety.

All in all, it was an amazing time and I can’t wait until next year!!

  
  

Starting the Journey

There’s a reason why Celiacs aren’t always in for a social event.  Think about it, every social event has food: employee lunches, dinner with friends, birthday parties, and picnics. They all have the same element: eating. When that goes away, what do you do? All of a sudden you are either the outcast and people don’t invite you out anymore, or the world revolves around you and your disease. Both of these give you attention that you don’t want or need at most times.  I mean, I live with Celiac Disease, and it’s one of my biggest platforms, but I don’t always want to talk about me, me, me.  (Que the Toby Keith song).

Here are some tips for those that are starting on their gluten free journey, to make social events much more positive:

  1. Don’t be afraid. Don’t be afraid to bring your own food. Don’t be afraid to speak up when someone says “let’s go to restaurant xyz” if you know you can’t eat there. I do this a lot and while it does attract attention, it’s fair that you get to eat too!  Also, don’t be afraid to ask your hostess what they are serving.  I did this for a birthday party I was going to last night, got the menu as well as the name of the BBQ sauce they were using, etc.  I was able to eat it all and if I hadn’t asked, I wouldn’t have known!
  2. Be strong. Going gluten free isn’t easy, for sure not in the beginning. I would tell you it is, but you’d be disappointed. It gets easier. Shopping gets easier, eating out gets easier and, hopefully, your friends and family will become sensitive to your needs. You will need strength to not bend and eat that pizza that you used to love. It will pay off if you stand strong  because your body will thank you for it as it heals from the damage that gluten has caused.  Always remember that!
  3. Ask for help.  If you don’t know where to shop, what to shop for or what brands are better than the next, just ask.  Find a group online or a local gluten free group and ask people their opinions.  As people that are GF, we have plenty of them!  In Grand Junction, we have an online Facebook group called Gluten Free Grand Valley Gluten Free Grand Valley but have people from all over so if you need support, just join our group.  We love to help!  Don’t want to ask in a public forum?  Email me.  I’m more than happy to help someone via email.
  4. Take the attention. Hopefully that means that people care about you and want to do what’s best for you. If they ask what restaurant you want to go to it means they want to hang out with you and keep you safe. I know that’s why my friends ask and I’m so grateful for their care. If it’s negative attention, take it as an opportunity to educate them on why it’s so important. Sometimes people just don’t understand and when they are told, it changes their opinions.  And with people saying that GF is just a fad diet, it’s a great time to tell them that not all people use it that way.
  5. Wear it proud.  Yes, being a Celiac isn’t easy and isn’t always fun but we are different and have a lot to offer the communities we live in.  We can show people that having an autoimmune disease doesn’t mean that we can’t still LIVE.  I love it when I’m introduced to a little girl with Celiac and get to tell her all of the things I do even though I have this strange, food related disease with a funky name.  I wear the Celiac ribbon a lot and get asked what it’s for.  Educate the public!

Things get easier as you get rolling and as more people understand, your life will get easier as well.

Coming in like a Lion…

I’m having a hard time believing that March is nearly over.  It seems like the longest, fastest month ever.  I hope you know what that means and, if not, it doesn’t matter.  It’s how this month feels.

March came in like a lion with putting my baby cat, Punky, to sleep.  It’s honestly still hard to be at home, not as hard as it was the first few days but I still find myself looking over my shoulder to make sure she’s not behind me in the kitchen and I still can’t go into her room much, even though it’s technically my office.  All in time, right?

I’m finding that March has been a difficult month for so many of my friends.  From death of family members to hospitalization of family members to cancer treatments to illness to…it just seems like it’s never ending.  I feel for all of my friends that are hurting right now and I worry that I’m not emotionally able to meet their needs because I feel drained.  I want to be there for them and am trying hard.

I wonder, sometimes, why it all hits at once.  Why it seems like everything flows along so well with everything, everything, and then everything blows up.  I’m certain that God is trying to get our attention about something, trying to say “Hey, don’t forget that I’m here” because we often think we can handle things all by ourselves, we want control.

I’m very thoughtful tonight.  Through my run after work, I tried to just clear my mind and focus on my pace.  I was able to do that but found myself going through the list of people in my life who are hurting, who are right now just trying to make it day by day and work through emotions that I, most of the time, can’t even fathom.

So, I have a feeling that March came in like a lion and will leave like a lion as well.

Don’t forget to follow me on Twitter and Facebook for more daily insights and information on gluten free and life!

Feel the Love

The past two weeks weren’t the easiest ones I’ve had in my life. Making the decision to put my Punky to sleep was a hard one, but the right one. I never want to have one of my fur babies suffer.

I learned a lot about the people in my life over the past days and I want to publicly thank you for your support, kind words and actions. I’ve been feeling the love more than ever before.

I had so many friends reach out to me: making dates to go on walks, for dinners, drinks or a day at a wrestling tournament. My parents spent so much time with me too, my dad helping me clean carpets. Yup, I said cleaning carpets.

All of these people wanted to make sure that I was ok, that I didn’t just dig myself into a depression, which could have easily happened. I had people email me, call me, text me, message me on Facebook, Twitter and through this blog…all with beautiful memories of Punky and encouraging words. And the gifts that are reminders of my beautiful fur baby. Those will help me to remember her as well.

I am one of the luckiest girls alive. And I thank you.

It was the best of times, it was the worst of times

February is a fun month.  Last week was an amazing week.  I am a part of the Grand Junction Lions Club and we hold one fundraiser a year.  It is not only the biggest fundraiser among the community groups in Grand Junction, it is the biggest one time fundraiser in Lions Club International.  We are kinda a big deal.

We do a raffle (six-seven weeks of selling raffle tickets) and then do a parade and carnival to finish it off.  The carnival is old timey:  a quarter a paddle and you can win different things like soda, bacon and eggs, candy, flowers and so much more.  We have been doing this for 86 years and it’s a staple in the community and several generations of people have attended.  Each year there is a theme:  this year was Colorado Wild and we did it up right, on a boat!

Me and Shawna (as Katy Perry)

Me and Shawna (as Katy Perry)

"I'm on a boat" crew

“I’m on a boat” crew

Me as a mermaid

Me as a mermaid

 

Yup, we have a good time and do a lot to raise money for the community.  This year we have pledged to give $125,000 to 10 organizations in Grand Junction.  Not too shabby.

Not only was a carnival but it was 10 years since I arrived in Grand Junction.  I’ve never lived anywhere for 10 years so this is huge.  I felt like I was celebrating with my Lions family (although most of them had no idea, but I pretended it was all about me anyway).  It’s a huge accomplishment in my life.

And then there was the worst of times.  Sunday night my cat, Punky, was incontinent not once, but twice.  She is 18 1/2, has been a diabetic for over six years and I know that this is a red flag.  She had been incontinent about a month ago but wrote it off as sleeping really hard, not a big deal.  I should have paid more attention.  So, I took her to the vet on Monday and Dr. Aimee Johnson put her on an antibiotic immediately.  We got the test results back yesterday (bladder infection) but at her age, this is much more than just that.  The incontinence hasn’t gone away, she seems to have a feline dementia (yes, there is such a thing) and…she’s my fur baby.

I’m facing the truth that I may have to make one of the hardest decisions that I’ve ever had to make and that is putting her to sleep.  I have to start looking past my desire to have my fur baby with me and to look at what is best for her.  Whether I should let her live with not knowing who I am (I am starting to look into eyes that sometimes have no idea who I am) or letting her go before she doesn’t even know when or how to eat.  I have to look past my desire to not want to make a hard decision or make a decision that keeps her from pain and suffering.  I have to look past ME.  And this isn’t easy.  I have spent the past two nights crying, hugging her, letting her sleep on my lap and just wondering:  is it time.  I have spent the past two days at work talking to my co worker and boss (who have and are going through the same thing as me) and listening to their advice.  I am fortunate to have a boss that says “when it’s time, take a day”.

And I have a feeling that the day will come soon…and I don’t want to have to make a decision but she is a faithful animal, a kind soul and won’t go…unless I make that decision for her.  That is my gut feeling.

So I had an amazing week last week…and now face an adult decision.  I don’t want to be an adult in this decision.  I want to make a fort, hide and play dolls in it…and forget that hard decisions exist.

Only the lonely

Sometimes we all feel lonely. Having a disease/intolerance/allergy will do that to you. I mean, people have bouts of loneliness as it as but having a condition can make that worse.

Let me preface this by saying that my friends are family are amazing!

But sometimes you feel deep down alone. Everyone else is talking Ho-Hos and Nutter Butters and you are thinking “can I make that gluten free?” Because not being able to grab those items makes you different. You can’t just go through the drive through because they have nothing you can eat. You can’t just go to a restaurant without calling ahead and you always have a bunch of food along with you “just in case”.

Let’s face it, being different is ok but constantly saying “I can’t have that” or “I can’t eat that” gets old.

It leaves you feeling lonely. So lonely.

What do you do about it? I love the fact that my friends and family watch out for me but how do you feel with that feeling of being different?

This is dedicated to the ones I love

There have been a lot of thoughts going through my mind the last two days. My brother found out that another of his friends took his life this week. My heart hurts for him as he’s had to deal with death so much in his life, almost always people around his age.

Something he wrote on Facebook got me thinking. First, we wear masks. I know a lot of times I “fake it til I make it”. We cover up the fact that we are going through trying times, put on a happy face and make it through the day only to collapse at home. It happens. But having people you can go to is a key.

Second, we need to tell people we love them. The worst feelings in the world are feeling lonely and unloved. Speak it, tell people you love them and show them by giving your time or a simple hug.

Last, be kind. This is one of my favorite sayings:

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Sometimes we speak and it comes out badly, we all have those moments. I know I’m guilty of that. But be kind, speak kindly and approach everyone as if it’s the worst day of their life. What’s the worst that could happen?

My thoughts and prayers are with everyone who had their lives touched by this gentleman. RIP.

As we age…

I just had another birthday.  Somedays I’m astonished at the fact that I’m nearly 40.  I don’t feel forty, luckily don’t look like it either so maybe that’s why I’m surprised.

I was having a conversation with my person, Shawna, last night.  We were talking about how it is nearly Christmas and how the month just flew by.  I asked “remember when you were a kid and Christmas seemed to take so long?”  She nodded in agreement.  I said “Why is it that now things go by so quickly?  Why as we age does time just fly?”

I don’t know what the answer is.  Maybe it’s because we have adopted hectic lifestyles, fill each minute of the day with SOMETHING.  And if we aren’t doing something, there is guilt because we could be doing something (in my case it’s usually housework).

We weren’t made to move and run constantly though.  We were made to have rest days, to have down time.  The unfortunate part is that as technology becomes more and more available to us at all times of the day, we never take a real rest.  We don’t take the time to stop and smell the roses, to take a walk, to take a leisurely drive to look at Christmas lights.  It’s all about squishing as much as we can into each and every day…but how much of it really matters?

I’ve been convicted recently to not have conversations via text.  I know that text, and email, is easy and quick but when something happens in my life, I don’t want to text my friends, I want to talk to them.  Even a phone call is good but face to face is a lost art.  I have a handful of friends that I see and get to tell my news to, the rest find out another way, I guess.

When I die (and each day I’m getting closer, reality says) I don’t want people to say “she was a busy person”, I want them to say “she spent time with us, took time with us” and I hope that conversations are remembered, not a rushed text.  I hope that the laughter and good times are remembered.

Take time.  Take time to have coffee, make a phone call.  Because in the end no one will remember the email you sent in a hurry or the text you sent to see what big thing happened in your life, the people who you took time for will remember you.