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.

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.

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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.

Christmas-time is here

Yes, it’s here, folks.  Tomorrow is Christmas.  As we move from the hustle and bustle of Christmas gift shopping and preparing for guests, don’t forget to be thankful for the simple things because when it all comes down to it, it doesn’t matter if dinner is perfect or if that gift isn’t the right size.  What matters is time with family and friends.

My brother recently lost a friend of his, he took his own life.  And yes, right before Christmas.  While this seems significant to many, in my mind it doesn’t matter.  Losing someone, no matter how, is hard at any time of the year.  I’ve watched my brother upload picture after picture of his friend, grieving via social media.  The really good thing about social media is that it brings people together at times like this and he is able to talk with others that knew this gentleman, sharing memories of him.

So, this Christmas, put away the one upping of “my gift cost more” or “my house is decorated better”.  Treasure time with those you love, tell them “I love you” many times because it can never be enough.  Most of all, have a very Merry Christmas and a blessed New Year!