I’m back.. and where I’ve been.

First off, I like to say that I am completely aware of the fact that I haven’t posted in almost 3 months.  I thought of many excuses I could give that would explain my absence.  Many involving the fact that my life has gone through a lot of changes over the last few months (which it has).  However, then I thought about the purpose of these excuses and how it would truly benefit me or you guys in the long run.

I’m sure that I am not alone in the feeling that many of our truths seem to fall on deaf ears.  When someone asks you how your day is going or how your are feeling, our go to is to just say “ok” or “I’m good”.  No one wants to hear you say, “I’m feeling like I woke up with a terrible stomach flu, tumbled down a few flights of stairs and then got hit by a Mack truck.”  But maybe we should start speaking out.  I don’t mean in the sense that you tell the guy behind you in the Starbucks line that you were in the toilet all night.   More like speaking out to your friends and coworkers when you are in pain or what that may feel like.  We tiptoe around discussions of our illnesses like they are something we should be ashamed of.

There is no shame in being sick.  We did not cause our illness, yet so many are afraid to open up about it.

So instead of giving you all some bull**** story about how I’ve had a lot going on and I’ve just been so busy, I figured I would just be honest with you all.  The truth is, I have a chronic illness.. or two or three.  I also have been going through some changes in my life.  Quite frankly, my motivation to write just has not been there.   However, I am back, and hopefully for good.  I can not promise that I will be able to post every week, but I can promise to do my best.  As honestly, that’s the best we can all really do.

I have so many different ideas and plans for this blog that I am super excited to be sharing with you all.  And of course I would love to hear ideas and comments from you guys as well.

Before I sign off for the night, I thought I would leave you with a bit of a story.  This is a story about bingo.  Pocketbook bingo to be exact.  So last Saturday, a good friend of mine had invited me out to a charity bingo event run by the American Lupus Foundation.

When my friend had first mentioned it to me,  I figured there would only be about 60 – 100 people tops.  Boy was I wrong.  Three hundred seats were up for sale, and the entire event was sold out!  The event was over 4 hours long just from the time we arrived to the time we left.

Now, I have never been to a bingo event, let alone a pocketbook bingo, to this magnitude.  The look of desire on the ladies faces as the men were modeling each designer hand bag was something like a pack of wild coyotes.  Each time a round reached its finale, the winners would scream out like they just won the jackpot lottery. (And maybe to them they had.)

By the time I got home, I was so exhausted and in so much pain from the sitting and the stamping and of course the over-stimulation from all the noise.  The next day all I did was sleep.  Ok, I was awake for a few hours, then went right back to sleep.

Needless to say,  Bingo wore me out.  And as I tried to explain to my mom the next day exactly why I felt so exhausted; her response to me was, “How did bingo wear you out?”  My thoughts exactly mom…my thoughts exactly.

 

 

Hi! I’m Dory!

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So I have a confession to make.  I am a sucker for Disney movies.  I love Disney.  My first trip to the Magic Kingdom was at the age of 1.  My parents have pictures of me in my bonnet riding on the teacups.  I made 5 trips to Disneyland by the age of 5 and came back from my 10th trip to Disney world just last October.  Finding Nemo is one of my favorite movies, so of course I was excited when it’s sequel came out. 

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My cousins seeing the castle for the first time!

So Friday night, I dragged myself down to the theater in my best it’s Friday night and all I want to do is sit on the couch in pj’s outfit.   I have to say, most of the time sequels are never better than the original.  Unless it’s one of the trilogy movies.  But Finding Dory was really good.  The bigger realization was what came after the movie.  And guess what folks.  I’m Dory.  Yup.  Repeating myself over and over because I forgot what I just said 5 minutes ago.  Check.  Going into a room just to realize I have no clue why I’m there.  Check check.  Completely forgetting what I was saying mid-coversation.  Check check check.  When I’m in the shower, I forget that I just washed my hair right after I do it and wash it again.  True story. 

So what’s a girl to do when she’s got the mind of a blue and yellow fish.  That’s a really good question and one that I still struggle with every day.  For one, routine is my best friend.  Routine makes things automatic and easier on the brain.  In the shower, I place all the bottles at eye level in the order I use them in.  I take all my pills around the same time every day.  (Currently I’m up to four pill dates a day)    Everything has a place, so I always know where it is.  Second, I write everything down.  Having a game plan means less time wasted wandering around forgetting what your doing. 

Don’t get me wrong.  I have my bad foggy days.  Sometimes I have to stop and think super hard about what I’m trying to say.  Even as I type, I have to stop and think to collect my thoughts.  I’m known to call a spatula, the flippy cook thingy. 

If I could remember everything that goes through my mind in a day, I probably would be able to blog much more.  I want to blog more, but some days the best I can do is lay on the couch and not think.  People seriously take advantage of the ability to work a normal 9-5 job and not feel like they just drank 2 bottles of wine by themselves and took a ride on the tilt a whirl at the end if the day.  But honestly, you can either sit and wallow about how miserable you feel or you can fight to stay positive and put a smile on your face.  Or at the very least hide it until you can cry in peace.

So my friends, let’s all accept our inner Dory and just keep swimming. 

Love and Zoodles

Happy Weekend!  It’s Saturday!  We made it through another week! 

Currently, I am sitting on my back porch with porkchop, the 4 legged house mate, listening to the dogs across the field barking away.  A young boy, about the age of 8, is imitating the sounds almost as if they are having a conversation. The more the boy barks, the more the dog barks.  This goes on for almost a half hour, and more children come out and join the boy in barking.  I began to laugh ridiculously hard at the whole sight of it.  As I’m laughing, I see a white butterfly fluttering above me, and I kinda feel like I’m outside of myself in that moment. It’s that unintentional moment that makes you smile, and gets you through the bad days. 

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This morning I finally decided to experiment with my veggetti maker that had been hanging around my kitchen unused for quite a few weeks now.  I had a few zucchini that had to be used up in my fridge, so I took them out and peeled them up.  I realize now that I probably could have done the noodles with the peel on, but I wasn’t too sure how it would turn out.  So I peeled them up and put them in the spiralizer and cranked it up.  I put my zoodles into a pan and fried them up with some olive oil and some scrambled eggs on the side. I topped it off with some organic non-fructose corn syrup ketchup and sat outside with a fork and a cup of coffee. 

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Before you ask, I did not get a picture of the zoodles.  Honestly, I was pretty out of it this morning with the fibro fog and forgot a picture.  Next time…I promise! 

I do love cooking.  I would love to be able to do more of it and post more recipes and creations on the blog.  I guess this is another goal to strive for.  Cooking for me is hard at times.  I am usually pretty tired at the end of the day, and most of the time in a lot of pain. Standing in the kitchen for long periods of time chopping and stirring when my body is screaming is the last thing on my mind.  My meals during the week tend to be quick and easy.  A stir fry, some rice and tomato sauce dish, baked chicken or fish, or steak with some sort of veggie.  It’s not elaborate, but it does the trick. 

Switching gears a bit.  I would like to get a few cents into one of the biggest topics going on right now.  Yes, I’m talking about the tragedies in Orlando these last few weeks. 

The shootings that happened in Orlando were sad and very unnecessary.  Mind you I do believe that everyone has a path in life and that includes the when and how of their death. 

Everyone is entitled to their opinions regarding the topics of LBGT rights.  But let’s stop for a moment to think about what would happen if we as a community no longer judged people for their thoughts, choices, actions or differences…..

Everything happens for a reason.  This is my life motto.  Everyone has their own path in life to follow.  At the end of the day, it’s about accepting that your path is not your neighbors path. Whether we are male, female, healthy, sick, gay, straight, black or white.  It’s about loving each other, differences and all. 

And with that.  Signing off.  (Drops the mic.)

Who am I

I’ve been thinking a lot lately about who I am now as opposed to who I was prior to fibromyalgia.  A few years ago I would have said I had who I was all down.  I’ve found that a lot of my favorite things and hobbies have been pushed to the side.  Perhaps this is because I simply can’t do them anymore, or maybe it’s because I don’t have time in my life for them. 

Let’s take the case of music as an example.  I love music in all forms.  Pre-fibro, I would sing in my car at the top of my lungs.  The emotions embedded into the music engulfs me, sometimes to the point of tears.  It is no secret that I am an incredibly emotional person.  I wear my heart on my sleeve.  Having fibro has highed all my senses.  Music has now become something that brings pain.  These days, I rarely play music in my car.  Usually it just makes whatever pain I’m feeling that day worse.  I would much rather start the day with calm and peace. 

Anyway, the point of this is that I have determined that I need to find myself again.  I need to define who I am with my illness.  What brings me peace and happiness.  I need to come up with a game plan to take control of my life. 

Everyday I struggle to balance a full time job, family, typical life stuff like bills and chores, and my health.  I work best with order.  It keeps me calm and prevents flares.  But order requires work.  This is difficult when energy is so precious.  However, finding this balance will allow me to be me again.  And who wants to be anything other then that. 

More on this coming soon!

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Last weekend I managed to find my way down to Asbury beach with SO and friends.  I don’t love the beach.  I’m not the type of girl who dreams of beach days.  I don’t love laying out and burning my skin.  I am pretty sensitive to the sun .  However, I do love the calm of being down the shore.  There is something about the atmosphere that is soothing to me. This particular day wasn’t too hot or too cold.  Once I began getting tired from the walking, I sat on one of the benches facing the water with my feet up while our friends 3 boys played on the beach. As I sat there listening to the waves crash onto the shore, my mind felt at peace.  I didnt think about anything except being in that moment. 

We ended the day with a water ice (everyone else had ice cream) on the boardwalk.  I had chocolate.  I truly felt like I was kid again.  Even though I ended up exausting myself for the day, just being able to get out there and feel like me was well worth the pain. 

So here’s to getting out there and taking chances in life.  No matter what kind of road blocks are in your path.  Life can not be lived from the seat of your couch.  Sometimes you just have to get out there.  Even if as far as you can go that day is the chair on your back porch. 

Accepting your Limits

Ever since I was a kid I have been what you would call a type A person.  The kind of person that wants to do everything, learn everything and be the best at it.  I operate best in order. I love routines.  And when it comes to anything new I try my hardest to master it.

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We as a society are trained to want more.  More food, more money, more fun.  Parents are consistently on the move between work, errands, kids games, birthday parties or pto meetings.  These are not bad things, however at some point everyone is going to have a limit.

Before fibro, my house was always clean, my bills always paid on time, and I could accept any social invitation. Still now my mind wants to be that type A person, however my body can no longer keep up. This illness is still very much new to me.  I struggle to figure out what my limits are as well as accepting them.

Let’s take last weekend for example.  Usually because I work all week, I try to spend at least one day during the weekend relaxing. However, my type A self is stubborn.  I went to bed pretty late Friday night, like I typically do, and woke up in a daze Saturday morning.  I had a party to go to that morning and had to put together my food for that day.

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The party was outside and consisted of mostly sitting. However, it was in the sun which always exhausts me, as well as the stimuli from music, people, etc.., which is a discussion for another day.

My parents came down the following morning.  I spent the time before hand cleaning up a bit.  We had lunch at one of my favorite diners, walked around the mall for a while and then came back home.  At that point, my joints were screaming but I kept going.  Made dinner for the day and then another late night. See where this is starting to go.

Next day, I woke up fairly early.  I had to do a grocery store run and target run. On the way I stopped at Lowes, wawa, and the pharmacy.  Grocery shopping alone is enough to wear me out.  Five stores in one sitting is just crazy.

By tuesday, every muscle in my body ached.  I could barely keep my eyes open. I finally reached my breaking point on Wednesday afternoon. When I got home broke down into a mass of snot and tears.  I just cried.  My emotions were going haywire, I could no longer move, and I could barely produce a sentence.  The entire evening, I laid there on the couch doing much of nothing. I slept for about 10 hours that night and took a nap at work the next day.

Kids the moral of the story is, I need to learn my limits and except them.  If perhaps I took a nap in between, or went to bed earlier that would have made a difference.  Or maybe this is just how it’s going to be.  A rollercoaster of flare ups dictating my life.

Sunshine and BBQ’s

After a long winter of icy weather and frozen toes, FINALLY it is starting to feel like spring.  Or even in the case of this weekend, summer!  We couldn’t have had a better Memorial day weekend.  It was a hot balmy 90 degrees Saturday and Sunday, complete with a cooler over cast not so sunny Monday.  Which is fine by me.

Summers in my family mark 3 months of picnics and barbeques with family and friends.  This year was no different.  Now in the past I would be pretty excited for these events.  They usually meant good food and good times, however when you have food allergies or a chronic illness they can be a bit difficult to maneuver.  I realized however that just because I can’t attend these events the way I used to, I can still continue to make memories with the people in my life.  So In the spirit of Memorial day weekend, I thought I would share some of my tips on how to attend family events living with a fibromyalgia and gluten intolerance.

So with out further ado…..

How to survive a party when you are gluten free and/or have a chronic illness!

  1. Talk to the host!  What kind of event are you attending?  Is it a dinner, backyard BBQ, an afternoon party with snacks, or a morning brunch?   Will there be anything you can eat there?  Is there a place you can store your food and will you be able to heat it up?  Sometimes if the party is a potluck, you can make a dish to share that you know is safe to eat.  If you know what to expect, you won’t have any surprises when you get there.
  2. Plan ahead.   Before I agree to attend an event, I typically will look at my schedule for the weekend and decide if it will fit into my energy budget.  If its an event I have to go to like a family birthday or a graduation party, I will make sure to budget the rest of my week so that I make time to prepare my food and get plenty of rest before hand.  Typically on the day of the event, I will take a short nap before or get to bed early the night before.  Nothing is worse then being at a social event and falling asleep on the couch.
  3. Pack enough of everything!  Below is a sample of what I would typically pack for a party.

*Water and drinks.  I typically don’t like to drink alcohol simply because I am sensitive to it and a drink will usually cause me to go into a flare.  However, when everyone else is holding a drink it feels strange not too.  I make sure to bring a lot of flavored or regular water.  Staying hydrated through out the night keeps my energy up and wards of those awful migraine headaches.

*Food.  Usually parties will contain a lot of chips and other snacks foods.  Usually none of which is gluten or dairy free.  Or they contain soy, sugars, or other things that just aren’t good for anyone.  But when you have a chronic illness like fibro, these foods tend to cause your symptoms to be much worse.  The worst thing is being at a party where everyone else is having fun and just feeling miserable.   Instead I bring healthier snacks.  Fruit, veggies that can be dipped, hummus, hard boiled eggs, and mixed nuts are all good choices.  Make sure to pack things with plenty of protein so that your not hungry all night.  If your going to an event where a meal is going to be served, you can make a quick meal ahead of time and then put it in a microwavable container.  Most people won’t have any issues with you heating your food up in their microwave.  If that’s not an option, packing a cold meal like a salad with protein works just as well.

*Medications and Emergency items.  If you are allergic to a food and require an epipen, make sure that you carry it with you as well as make sure someone there knows you have it.   Or, if your food reactions is more in another nature, make sure to make note of restrooms.  Over the counter medications or prescription medications is also good to have on hand.

 

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My BBQ survival kit.

4.  Be prepared for the weather.  If your sensitive to the sun make sure to pack a hat and sunscreen. Sunglasses are helpful for sun sensitive eyes.  Sweaters are also a must in case it gets colder in the evenings.

Finally,  use your own judgment and don’t be afraid to say no or head home early.   If you don’t think your up for going, don’t go!  Your friends and family will understand, and if they don’t then let it go!  This is your life and your health!

So what CAN you eat?

If you have been following along with my blog so far, you already know that I have gluten intolerance.   One little crumb of this volatile stuff will cause the most violent reaction within my gut and my brain.  The same holds true to cows milk or anything containing the proteins found in cows milk.   These are all things that most people in my life tend to know about me.  However, this is just a small part of the dietary difficulties I go through.   I am also sensitive to a variety of other food/food additives.  This includes but is not limited to added sugars, chemicals, dyes, soy, and even alcohol.

I know what you all are thinking right about now, “So what can you eat?”   Your probably imagining a life filled with unpalatable meals and just no fun at all.  Therefore, I thought I would give you all a glimpse  at exactly what I do eat.  Now keep in mind, I am 100% gluten and cows dairy free.  I do try to keep soy to a minimum, but no one is perfect.  Once in a while I will have the occasional treat or gluten free beer.  But I typically pay for these with fatigue and pain.  Anyway, on with the food.

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Breakfast:   I have always been a breakfast eater.  This is something that was instilled in me as a child.  Growing up, my mom always made sure that we had something in our stomach before going off to school.  Even if that was just a piece of fruit or some toast.  My life now is no different. Usually breakfast for me can be one of the following.

  • Gluten free oats with fruit  (I usually get the glutenfreeda brand in original)
  • eggs with veggies or fruit (omelets, dip eggs, scrambled, in the microwave, or hard boiled. )
  • gluten free toast with natural pb or coconut butter.
  • Other options (sweet potatoes, bacon, and my more recent addition chia seeds and coconut milk)

Typically breakfast is something quick and easy during the week because, honestly, I just don’t have the energy to waste on anything else.

Lunch: This becomes a bit more routine for me, especially during the week.  Typically I will pack a salad with some sort of protein and a mix of what ever fruits and veggies we have in the fridge.  Sometimes I will have some hummus with veggies to tip in.  Or if there are leftovers from dinner then I will have that.

Dinner:  Honestly, the list of meals in this category are endless here.  Basically all meats are a go as well as veggies.  Rice and potatoes are typical starches.  And sometimes gluten free pasta, although I don’t really like to have this too often.

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Steak Medallions, Scallops and Asparagus

 

Fish, Steak, Chicken, Pork, Stir-fry,  Soups, Salads. The point is, if there is anyone struggling with the idea of going gluten free or diary free, it doesn’t have to be eating cardboard bread or nothing but carrots. Nor, do you have to commit to slaving in the kitchen all day long.  Gluten free and dairy free foods in their natural forms can be delicious and most of the time only really take a half hour or less to make.  All it takes is some creativity and a few herbs and spices.

Intentional Thoughts and a dose of Reality.

When I thought about starting this blog, I had a few goals in mind.  First, I wanted to be able to encourage others living with chronic illness that they are not alone.  Seeing how others live and handle the disease can help you with your own.  When I first got sick, blogs and online support groups were my main source of information.  Doctors don’t tell you how to go gluten free, just that you have too.  It’s such a major learning curve, and I don’t know where I would have been without the support of the internet.  My goal is to provide tips, and some insite on how I live with multiple illesses.  I try not to go into too much depth regarding symptoms, pain etc.. however I will not be fake either and some days weeks are just tough.  Enter this week.  You see my intention was to blog at least once this week, however the last few days have been spent either at work or in bed. 

The problem with having multiple illnesses is that they feed off one another.  For example, when my hashimotos is in a flare it causes my Fibro to flare.  Sometimes it is difficult to distinguish between multiple conditions because the symptoms are similar, and when they are all flaring at once you just seem like a ball of mess. 

So getting back to this week, the first few days were riddled with pain, muscle spasms and fatique, then as the week progressed it went into anxiety, more pain and mood swings complete with a few crying sessions.  You see my thyroid has been under attack causing my tsh levels to skyrocket.  My doctor called in a higher dose of thyroid replacement and I am hopefully on the mend, however I would have not known if I did not request new blood work from the doctor. 

The point is, it’s so important for one to be their own advocate when dealing with chronic illness.  You know your body better than anyone else.  Take the time to make note of your symptoms, see what helps and what does not.  It could mean the difference between controlling your illness or it controlling you. 

When a Butterfly gets its wings.

Being diagnosed with a chronic illness like fibromyalgia or autoimmune disease changes you.  No matter how hard you try to convince yourself that you can continue to live your life like nothing has changed, the illness will slowly seep into your life until it has completely taken over.  People have lost jobs or had to switch careers because they can no longer keep up with the demands of work.  Friendships and relationships are shattered because others just can not understand.  It is very easy to fall into a dark place of pity.  At some point you have to accept that the old you is gone, and you need to learn how to spread your wings again.

For me this meant accepting that my capabilities were no longer what they used to be.   Before,  I was a dancer going to classes twice a week.  I would run on the weekends and try to be as active as I can be.  Before,  I always had a clean house and bills were always paid on time.  I would accept any invitation I go to spend time with a friend.  Before my mind was quick and my memory was spot on.  Now, I struggle just to do the simplest tasks.  I mourned my old life for a long time and in some ways I still do.

When you have fibromyalgia or an autoimmune disease like lupus, RA, or Hashimoto’s  every day is a battle.  You can’t do too much but you can’t do too little.  You have to learn to pick and choose the things your want to do, because you don’t have the energy to do everything.  And once you run out of energy, that’s when your symptoms flare leaving you in bed for days.  You learn to set your priorities straight.  The key is finding what gives you the most happiness in life and putting your energy towards those things.  That’s what a life un-intentionally is all about.  Its about finding happiness in the small things.  Its about learning to be content with who you are now with the illness.  Because you can’t go back to the way things used to be.  You are now a butterfly and to fly you need to find your wings.

~Lauren

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Why I eat Gluten Free.

Before being diagnosed with gluten intolerance, I like most people had no clue what gluten was.  I knew of it but thought it was a diet for over protective mothers and new age health guru’s.  I had no idea that something I thought was so healthy for me, a simple piece of whole grain bread, was causing such chaos in my body.

I have always had problems with food.  Even from an early age I developed a love hate relationship with it. After being diagnosed with hypothyroidism, my biggest mistake was not being an advocate for my health.  If I could do it over again, I would have done my research.  I had been placed on thyroid hormones, but the underlying autoimmune disease continued to rage a war inside me.   Any time I ate, I would get sick.  It became so bad that at one point I feared eating.  I would find myself choosing to be hungry instead of eating because I knew that it meant enduring hours in the bathroom. In 2013 I finally had enough.  I went to my doctor who immediately told me that it was just stress and hormones.  He prescribed medication that was meant to help relax the muscles in my stomach and told me to eat more fiber.  This only made the problem worse.  Frustrated I began taking things into my own hands.  I researched for hours trying to find something that could help the symptoms.  I came across something called the FOD MAPS diet, and started thinking food could be the answer.

Dairy was the first thing to go.  I knew that I always felt worse when eating cheese and anything with milk.  I started feeling somewhat better but it wasn’t enough to really make a difference.  So I dove all in with the diet.  I ate salads for lunch and fruit for breakfast.  My ah ha moment was about a week and a half into my diet trial, I went out to eat with some friends and ordered a chicken sandwich and within 20 minutes I was sick.

I went into my next doctors appointment armed with my new found information.  He ordered some blood work and sent me to a gastrointestinal  specialist who ordered more blood work.  Surprise, everything came back normal, except for my ANA which was slightly positive.  I knew however that this was the answer.  I had to go back to eating gluten due to the fact that not eating it would disrupt the accuracy of the testing.  Over the 2 months I had to wait for the testing to be completed I was becoming sicker and sicker.  The more gluten I ate the worse I felt.  Finally the day came when all the results were in, I had my scope done and I was sure there would be tons of damage. I was diagnosed as gluten intolerant with possible borderline celiac due to slight inflammation.  I also tested positive for the gene for celiac.  This combined with my history of autoimmune problems was enough for me to go gluten free for life.  I was so relieved to find an answer.  But my journey was just beginning.  Now when I get glutened my body goes to war. I get almost like a full body stomach flu complete with fever and dehydration due to not being able to keep anything down.

I eat gluten free because I have to.  Not because of a fad or because I want to loose weight.  I eat gluten free because my life depends on it.

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~ Lauren