Dealing with Flare Ups & What NOT to Say to the Chronically Ill

No matter how careful you are to make sure you avoid gluten and do things to try to be healthy, such as drinking lots of water, taking vitamin supplements and eating healthier, sometimes you still end up having a flare up.  Unfortunately, that is simply the nature of life with autoimmune disorders and chronic illness.  Sometimes there just isn't anything you can do to avoid it, no matter how hard you try.

Many things can affect and trigger a flare up.  Things such as changing seasons, stress, illness such as a cold or the flu, time change, unexpected life changes, etc.

This year has been a very difficult and painful year for me and my family, as we've gone through many large and unwelcome transitions.  Since the beginning of August, we lost my grandmother, then my father-in-law only a month later.  Pressures and changes at work for both my husband and I have brought us not only high stress levels, but uncertainty about our future.  With the onset of Autumn came seasonal colds, flu and other illnesses that we've been exposed to out and about.  So many things can trigger a symptom flare up.  These triggers, as well as the symptoms, can be vastly different in different people.  I'm currently suffering through a flare up.  I haven't been glutened (always my husband's first question) and I have been taking my vitamin supplements (his standard second question), yet I am in the middle of a flare up.  The simplest task leaves me feeling completely physically, mentally and emotionally exhausted.  I have been in the bathroom far too much for comfort over the past couple of days with diarrhea and upset stomach.  My head is pounding and, quite honestly, I can barely keep my eyes open to write this post.  My thoughts feel jumbled and, at times, I struggle to find the right word (I swear it is RIGHT on the tip of my tongue!).  My eczema on my arms and behind my ears is aggravated and I just want to crawl under the covers and not come out until Spring arrives!

How do I deal with a flare up like this one?  I'm so glad you asked!  First, know that there is NO magic cure or quick recovery treatment.  Your body has to take as much time as it needs to get over the flare.  However, there are some things you can do to help your body along and make it a little easier for yourself.

1. Stay hydrated!  I sometimes have a hard time with this one, though it is always something I will stress to other people.  It is so important to stay hydrated!!  It will help you replenish your body and will give you more energy (don't laugh - I can hear you now..."Energy?  What is that?!")  I know that seems like a foreign concept to those who are chronically ill because sometimes just the effort of getting out of bed can take every ounce of energy you may have.  But, staying hydrated will boost your energy level, even if it is just a little bit.  After all, every little bit counts when you have chronic illness.  Hydration also helps to lessen or eliminate muscle cramps and spasms.  When I have a flare up, one of my symptoms that gets worse is muscle spasms in my right arm.  I generally have some every day, but usually they are minor and don't cause me pain.  When I have a flare up, however, the spasms are hard and can really cripple up my arm for a time.

2. Allow your body to rest.  Sometimes it can feel like all you are doing is resting.  My work week gets to be long and by the time the weekend comes around I am usually done in.  It is difficult to accomplish things I need to around the house.  I'm learning that I need to do small tasks and take breaks frequently to help prevent from becoming severely drained and unable to function.  When your body is telling you it needs a break - LISTEN to it and obey!  You are not being lazy, you are simply giving your body what it needs.  I know that sleep can be difficult to come by when you are having a flare up due to insomnia or body aches or multiple trips to the bathroom because of gut issues.  Yes, our bodies require sleep.  It is exceedingly vital.  However, I am talking here about resting.  Sit down, lay down, whatever you need to do to allow your body and mind some down time.  For instance, I am writing this post on my laptop while in bed because I don't even have the energy to sit at my desk.  

3. Eat foods that aid in lowering inflammation.  Some good anti-inflammatory foods are bone broth, fish for Omega-3 fatty acids which can aid many health issues, fruits such as pineapple and blueberries, green tea and even dark chocolate.  I know women everywhere are cheering for that last one!  You can research anti-inflammatory foods online.  A really great and informative post about anti-inflammatory foods can be found here.

4. Take a probiotic and vitamin supplements - research to be sure they are gluten free.  My doctor advised me to take a probiotic that is at least 30 billion live cultures per serving.  In my own research I have found that it is generally advised that someone with chronic illness should take at least 50 billion live cultures or more per serving to get the most benefit from it.  To learn more about probiotics and what they do, check out this article.  My doctor also advised me to take prenatal vitamins, though I am well past the age of being able to get pregnant.  He told me that because I have multiple vitamin deficiencies, a prenatal vitamin would benefit me the most.

Now, for those who are not chronically ill, but have someone in your life who is...please never, ever, EVER say any of the following to that person or anyone who suffers from chronic illness:

5. I wish I could just lay around all day and do nothing.

4. Now that you know what is wrong with your health you shouldn't be getting sick anymore, right?

3. You're lucky.  I'd love to be sick just long enough to lose those few extra pounds I've gained.

2. No one could be sick that much, you must be faking it!

1. But you don't look sick!

On any given day, someone living with chronic illness has to push through the pain, fatigue, brain fog, anxiety and more just to attempt to function as if they were a healthy person.  You have no idea how much energy it takes to pretend NOT to be sick!  Just because we are at work, grocery shopping, doing laundry, attending events, do not mistakenly think that we aren't suffering.  We've just become very adept at keeping our suffering hidden.  We aren't trying to get attention.  It may come as a surprise to you, but we don't enjoy being the center of attention due to our health conditions.  We don't want your pity, your scoffing, your disbelief.  We need your patience, compassion and understanding.  What we are going through is difficult, can be isolating and it is an every day battle.  EVERY. DAY.  It will never go away.  This is our life.  For the rest of our lives.

Learning Self-Care to Enjoy a Better Life

When I first heard the term “self-care” many years ago, it didn’t quite compute.  If you’re like me, when I was growing up, I was taught to take care of others before my own needs.  It is something that is completely engrained in me and is second nature after more than 50 years of being alive.  I’ve always worked hard to follow that in my own life, sometimes to my own detriment.  I’ve always believed, wrongfully so, that my own needs are always secondary and if I am taking care of myself, I am being selfish.  Just like everything else in life, this area requires balance.  That balance has been and often, still is difficult for me to find.  Yet, self-care is so vitally important to our well-being.  I mean, if you don’t take care of yourself, how can you possibly take care of anyone else?

Anyone who has ever flown has sat through the instructions from the flight attendants prior to take off.  One of the most important instructions they always give is about the oxygen masks that will pop down from the overhead compartment in case of loss of cabin pressure.  What is it they always, without fail instruct the passengers to do?  Put the mask on YOURSELF before helping any small children or incapacitated person near you.  That is because if you lose consciousness, you are incapable of coming to someone else’s aid.  In other words, if you don’t take care of yourself first, not only will you suffer, but so will those around you.  Self-care is important to everyone, but especially those of us living with autoimmune disorders and chronic health issues.  Our bodies require more self-care than most in order to be able to function at any given time.

So, what does self-care look like?  I imagine it can mean many different things to many different people.  Here are some things I’ve learned about self-care along my own journey.

1.      Learn and abide by your limitations

That doesn’t mean, let your limitations keep you from living your life as fully as you can or to use your limitations as excuses to keep from doing things.  It just means that we need to listen to our bodies.  No one else knows your body like you do.  You know what activities require extra energy from you and what activities wear you down.  In my own case, I have learned that I cannot plan multiple activities for the same day or even just one all-day activity.  My body rebels against me when I expect too much from it.  I need to honor that by planning accordingly and resting when necessary.  Yep, it means that often I have to say no to activities and events that I would LOVE to take part in.  But sometimes self-care simply means saying no.  It is ok to say no.  It is not the end of the world.  And it doesn’t mean that you always have to say no.  If I say no to things that I know will prove to be too much for my body to handle, that opens up opportunities for me to say yes to other things I may not have been able to do before.

2.      Get plenty of rest

All of us need rest.  Those of us with chronic illness or autoimmune disorders require more than normal.  Honor that.  Yes, we need to get plenty of sleep at night.  Each person’s needs may be different on how much their body actually requires versus someone else’s needs.  Sleep is not the only form of resting.  Down time, just kicking back with no activities and taking time to relax for a while helps to recharge your body, as well.  My favorite way to relax is to grab a cup of hot tea and a good book and just lounge and read.  I have so many people tell me that they don’t have time to do sit and read.  I understand that.  The busyness of life gets to us all at times.  This is an area of your life where you need to make time.  Carve out in your schedule a little bit of “me” time to sit and relax and rest your body and mind for a little while. 

3.      Hydration & healthy eating habits

Again, this is a vital part of life.  I have a bad habit of drinking one soda per day.  I love the carbonation.  But even one per day is so unhealthy for my body.  And, I’ve begun to notice different things about my body when I drink soda instead of water.  I get more muscle cramps, my joints feel swollen and achy, I end up feeling sluggish and fatigued throughout the day.  When I am drinking plenty of water, I have found that I have more energy, I feel more focused throughout the day and the muscle cramps and swollen and achy joints are no longer an issue.  Making healthy choices for our meals is exceedingly important as well.  I love the summer and all of the fresh fruits, veggies and herbs I can purchase at the local farmer’s market!  When I was first diagnosed, my first response as I was learning to live gluten free was to purchase and consume the gluten free counterparts to what I used to enjoy prior to my Celiac diagnosis.  Sadly, most of that was crap!  The more processed the foods are, the less good they do for your body.  The more you can stick with less processed, more naturally gluten free foods, the better off you will be.  You will feel more energetic and be healthier overall.

4.      Spiritual health

My current personal Bible study is,  "Beautiful Brokenness "

I know this can take many different forms for many different people.  We are, at our core, spiritual beings.  For me, being a part of a church family helps me find my purpose, my joy.  I work as part of the worship and service team most Sundays and I love it!  It has grown me so much as a person to be a part of this great team and to be an active member of this church family.  My time on Sundays as well as the small group Bible study that I help facilitate really help me rejuvenate for each week.  The times that I have to miss for one reason or another, I can feel it down deep in my soul and I feel emptier and miss it so much.  Being plugged in to this church family feeds my spirit in ways nothing else I have found ever has.  Taking time during the week for my own personal prayer time and Bible study just adds to that fullness.  I have dear friends who take care of their spiritual health through yoga and meditation.  Others I know actually feed their spiritual beings through their art.  Whatever form it may take, setting aside time to care for your spiritual self is also very important

5.      Make time to do activities you enjoy

One of my favorite passions and hobbies, photography. 

This photo is two things that relax me, crocheting and snuggling with my kitties. 

This past year has not been a good one for me and my family.  While there have been some very good and enjoyable things about the year, there have been a lot of hardships and some big, painful losses that have really disrupted our world.  For most of the year, the activities that have always given me pleasure have taken a backseat and been set aside.  Some of these activities help keep me centered.  Since I was a young girl I have found release through art and writing.  Even if the only person who will ever see my drawings or paintings or read what I’ve written is me, it is still a way for me to get in touch with my innermost being.  I also enjoy photography.  We have to make time for the things we enjoy as well as those responsibilities we all have.  We aren’t meant to go through life just doing a job.  Yes, we need to work in order to make money to be able to pay for the necessities and extras, but we need to find hobbies that we enjoy, too.

6.       Take time for something silly and fun once in a while

Me with my cousins, Amy & Lori Ann taking some time for fun and just being together a couple of days after our grandma's funeral. 

At our last meeting of the Western Iowa Celiac & Gluten Free Living group, I passed out some little gifts.  Inside each pouch was a small notebook, a pen, a trinket reminding each person to never give up and a small bottle of blowing bubbles.  Yes, the bubbles may seem silly, but it symbolizes to me the simple joys we tend to forget about and set aside as adults.  I, personally, have fun blowing bubbles.  It requires very little from you and you can’t help but laugh and smile while you are doing it.  I’ve found that doing something fun helps ease away the tension and stresses of life.

Is anyone wondering what the small notebooks and pens in the pouches were for?  They were for each person to write down ideas in their own lives for how they can practice self-care.  So, now that you know what self-care looks like to me, tell me how you practice self-care in your own life.

Until next week, be well and be happy.

Raise Awareness Not Tempers

After a brief hiatus, I'm back and ready to get back into the swing of things full force!  Recently I've seen several posts from people who are angry and frustrated with what they call incompetent doctors who misdiagnose or failed to diagnose for too long a period of time before they finally got a correct diagnosis of Celiac Disease. It does on average take anywhere up to 10 years sometimes to get a correct Celiac diagnosis because this is simply not the first thing doctors necessarily consider.  While I fully understand their frustrations, I prefer to take a more practical and logical view of this.

One, I am not an angry or negative person by nature.  I tend to find the positive in even the dimmest, darkest situation.  I think becoming angry about supposed doctor incompetence is counterproductive.  Please remember that there are over 300 hundred possible known symptoms of Celiac Disease, many of which, mimic other health disorders.  For a fairly comprehensive list of the known Celiac symptoms click here. 

Over my life I have presented with 73 varying, chronic symptoms, many of which could also be attributed to my hypothyroidism.  Symptoms for Celiac Disease range anywhere from IBS type symptoms, severe bloating, skin issues, brittle nails, dental problems, brain fog, anxiety, insomnia, paranoia, achy, swollen joints, other health disorders and autoimmune diseases, and in extreme cases anaphylaxis.  If taken separately, each of my 73 symptoms could potentially lead to 73 very different diagnoses.  In fact, it took my doctor 3 years to finally test me for Celiac Disease.  It wasn't because he was incompetent.  On the contrary.  He was searching for answers to my most pressing symptoms, which appeared to be allergies of some kind.  It wasn't until I nearly died from a severe anaphylactic attack that he reviewed my entire medical history and put all of my symptoms together to consider to test me for Celiac Disease.  He worked so hard with various tests and treatments to try to find the right answer.  We were both looking at only the most recent and severest symptoms instead of the whole picture.  Which is logical that a doctor would do that! 

There is no medical treatment or cure for Celiac Disease.  Unless a doctor is a specialist in this area, Celiac Disease is not going to be the first diagnosis on his or her mind.  Again, with such a huge variety of symptoms, many of which have absolutely nothing to do with the gut, it is no wonder that so many people are misdiagnosed, often multiple times, before finally getting the correct diagnosis.  The key isn't to get angry, but to educate!  My doctor doesn't know a lot about Celiac Disease.  He can't treat me medically for it, so he has actually learned a bit more about it from me through the past few years.  I love that he asks me questions about it and that he listens to what I have to say.  He is a general practitioner, not a specialist in Celiac Disease.  And, he is a very good doctor, whom I still see for my overall health and wellbeing.  

Yes, it is very frustrating how long it takes to get a correct diagnosis - if you ever do!  Believe me, I was extremely frustrated, too!  I've never blamed my doctor, though or believed he wasn't doing all he could to find an answer.  The more we can educate people and raise awareness of Celiac Disease, what it is, what the symptoms are and what it truly means to live gluten free, hopefully, the better doctors will get at recognizing and diagnosing Celiac Disease more quickly.  Admittedly, I was frustrated several months after my diagnosis via blood tests and going gluten free to learn that I should have had a confirming endoscopy.  This is where gently educating our medical professionals comes in handy.  My doctor didn't know that I should have had an endoscopy.  He knew which blood tests to order for diagnosis that way, but when I asked if there were any other tests that I needed, he told me no.  This disease is simply one that most doctors have little to no experience with.  If your doctor is open to it, sit with him or her and discuss your disease with them.  Let them know about it, what it is like to live with it, what it means to be gluten free.  I feel fortunate that my doctor is truly interested in what I have to say about it.  He knows I've done my research.  He knows I want to do whatever I can to get healthy.  And he knows it is important for him to know more about it.  Maybe, because of my history and diagnosis, he may recognize symptoms in someone else and be able to diagnose them sooner.

This is one of the biggest reasons I began this blog, am co-leader of my local Celiac and Gluten Free support group and recently built a new website - to help educate and raise awareness.  What can you do to help raise awareness for Celiac Disease in a positive and proactive manner?

For more resources visit:
https://www.beyondceliac.org/
https://celiac.org/
https://westerniowaceliacandglutenfreeliving.com/

10 Things I'd Like People to Know About Living With Celiac Disease

Living with Celiac Disease is no walk in the park.  One of the speakers at the Iowa Celiac Conference that took place on Sept. 29th in Marion, Iowa spoke about the emotions of living with Celiac Disease, or any chronic illness, for that matter.  You can read more about the conference from last week's blog post I wrote here.  The biggest thing that stood out to me about this portion of the conference was the truth that people understand things based on their own experiences, not necessarily the way things really are.  People who have never lived with chronic illness can't possibly understand what those of us who do go through.  It is beyond their scope of experience.  So, those of us living with chronic illness end up feeling hurt or frustrated at well-meaning family and friends who just don't understand.  It's not their fault.  They are trying - based on their own life experiences.  That is all we can ask of them.  Having said all of that, I believe that communication helps facilitate understanding between people.  So, in the hopes of fostering some understanding I have put together a list of what I wish people who don't live with Celiac Disease could know about those of us who live with this every day.

I can't just go out to eat with friends or family at the drop of a hat.  I need a bit of notice, especially if plans are to eat at a restaurant that I haven't been to since my diagnosis.  Living with Celiac Disease makes spontaneity extremely difficult.  Fast food restaurants are completely out of the question and you have no idea the panicky feeling I go through before any kind of social event that includes a meal such as a work banquet, wedding reception, etc.

Just because a restaurant offers a gluten free menu or gluten free menu items does not necessarily mean that the food is actually safe for me to consume.  I have to ask my server questions in order to determine if the gluten free food is prepared on shared equipment,  oven, grill, fryers with gluten-filled foods, if shared utensils are used as well as what steps are taken, if any, to prevent cross-contact with gluten.  This is why I require a bit of notice so I can do as much research ahead of time as possible in order to keep myself safe.  Even if the food is gluten free, if it is prepared using shared equipment and utensils, it is not safe for me to eat.

If I have to cancel plans at the last minute (and trust me, more times than I would like, this has and will happen) it is not because I don't want to go, am being anti-social or am in some way upset with you or don't like you.  Nothing could be farther from the truth!  If I have to cancel it is "just" because I'm having a flare up and can't leave the house.  This disease can be very isolating at times.

It is not just ingesting gluten that can cause a flare up of my symptoms.   Flare ups can happen if I'm under a lot of stress, not getting enough rest or have been around anyone who has any kind of illness, even as simple as the common cold.  My immune system sucks!  My body has been attacking itself for decades and sometimes, no matter how careful I am or how well I take care of myself, flare ups happen.

Something as small as a teeny, tiny crumb containing gluten can put me in bed for up to a week with nearly unbearable symptoms that range from raging diarrhea, vomiting,  inflamed and achy muscles and joints,  a severely bloated abdomen that feels like my insides are on fire and going to explode, migraines and so much more.

Believe it or not, I HATE the fact that I can NEVER take a break from thinking about Celiac Disease.  Not for a single minute!  If I let my guard down I can get "glutened" and end up being terribly sick.  And, in my case, my worst symptom is anaphylaxis, meaning my face swells up and my throat closes off (think of what you know about people with a peanut allergy).  That is so not worth letting my guard down for even a moment.  It's exhausting!!

I know and absolutely hate that my disease causes others to be inconvenienced.  Having to put my needs first is difficult for me because it goes against everything in my nature.  When other people are put out because of the constraints of my disease it hurts me because I don't want to be the cause of others being inconvenienced.

All gluten free food doesn't taste like cardboard.  In fact, there is a lot of great tasting gluten free food!  The best gluten free foods (healthiest and best tasting) are those that use minimally processed or un-processed  naturally gluten free foods and ingredients.

It's not a fad or a weight loss diet.  Being gluten free is my medicine!

I've learned that I'm stronger than I ever knew.

#celiacawareness #glutenfree #glutenfree4life #itsnotafadforme #glutenfreebecauseIhave2b #siouxlandceliac

2018 Iowa Celiac Conference

On Sept 29th, my mom, Edie and Siouxland Celiac Group co-leader, Susie and I attended the 2018 Iowa Celiac Conference in Marion, Iowa. It was a small conference, but we were happy to get to meet and mingle with other Celiacs from not only Iowa, but even LaCrosse, WI and Ohio. We arrived Friday evening, checked into our room at the Microtel Inn and Suites in Marion and then decided on a destination for supper. The pamphlet about the conference listed several restaurant options that offer gluten free menus. We selected Biaggi's Ristorante Italiano. Oh my! Were we ever glad we chose to eat there! The food was amazing and neither Susie or I had to ask many questions of our server, as she was very knowledgeable and gave us all of the information we needed up front once she found out that we were gluten free for health reasons before we could even ask. My mom, who does not have Celiac Disease and doesn't have to eat gluten free had her pick of what she wanted out of the regular bread basket, while Susie and I each enjoyed a gluten free flatbread that was prepared to order for us. I was nice and shared a piece of mine with my mom, who is always game to try any of my gluten free food! The meals were huge and we each ended up taking a to-go box home with us.

My mom, Edie, me (Margo) and Susie outside of Biaggi's

Mom (Edie) and Susie by the fireplace.  Mom's steak and fries can be seen in this photo.

This picture doesn't do this amazing gluten free flatbread, which we dipped in EVVO and grated Parmesan, justice

Both Susie and I ordered this amazing sea food and gluten free pasta dish

There were only three vendors at the conference, which, Jill (one of the event's organizers) said is the fewest they've had. She told us that there were initially more who were going to be there, but didn't show up. That was disappointing, but it was still a great experience and I did check out the three vendors who were there and bought some items from one of them.

There were three speakers. The first was Dr Hilary Jericho who is the Assistant Professor of Pediatrics and Director of Pediatric Clinical Research at the University of Chicago's Celiac Disease Center. She brought us the latest on Celiac standards for testing and research. A lot of the information she provided was stuff that both Susie and I already knew, having both lived with Celiac for several years now, but it was still interesting and informative.

Judy Fitzgibbons spoke next. She has been a registered dietitian for more than 40 years and has worked for the past 15 years as the in-store dietitian for Hy-Vee in Cedar Rapids. She gave us information on Gluten Free labeling laws and what to look for as well as what to avoid. Susie and I were able to speak with her for a few minutes as the conference was wrapping up.

Our last speaker was Kristen Richardson, a Psychiatric Nurse Practitioner who created a Holistic Mental Health Care Private Practice in 2005. She led a thought-provoking discussion on the emotional side of Celiac Disease. Kristen gave us a fresh perspective on things, as well. So often it is easy for us, as Celiacs, to get our feelings hurt by well-meaning people who say or do the wrong thing. We often feel like they are being mean or purposefully disrespectful of what we have to live with. Kristen pointed out their point of view. They don't live with Celiac Disease, so it is difficult for them to understand what we go through. Each person looks at things through their own scope of experience. So, people who don't have Celiac tend to look at it through what their experiences with illness or possible food issues have been. They aren't purposefully, in most cases, trying to not include us or say or do ignorant things. They just don't have the experiences we do. It's funny because I've said many times that having Celiac Disease has made me more compassionate and understanding toward other people facing health issues. I haven't thought about the fact that other people also need to be treated with compassion and understanding, not just those of us facing chronic health problems. My mom spoke a little bit with Kristen after her portion of the conference.

We also listened to a panel discussion on Growing Up Celiac. Two school aged girls spoke about their experiences being kids with Celiac and their parents spoke about what they have to do each year in order for their kids to be kept safe from gluten at school. I hope to have a future post that will include first-hand experiences from a couple of young school aged girls that I know and from their mom.

Susie and I spoke with Betty and Jill, the two event organizers. These ladies lead the Waverly, Iowa Celiac Group. They didn't even know there was still a group on our side of the state. Jill explained that there used to be several Celiac Groups in the Western Iowa area, but one by one, they ended up folding. They were very happy to hear about our group and the hopes we have for expanding the reach of our group to help a greater area on the Western side of the state. Jill was able to share some tips and encouragement with me and Susie and she and Betty even suggested that maybe we would be able to have the 2020 Iowa Celiac Conference in Sioux City! Both Susie and I were stunned at that! There is a lot we would have to do in order to accomplish this, but I believe it can be done. Note - this is not something that is set in stone yet. It is something we are looking into and will work with the larger group in hopes of seeing this happen. I will keep you up to date with information as planning forges ahead.

The gentleman we met from LaCrosse, WI shared with us their group's newsletter and I mentioned something about the possibility of our group starting a quarterly newsletter to help keep our people informed. Jill told us that any Celiac Awareness or group activities/events that we hold could be included in the state newsletter, as well, so that our reach can touch many people throughout the state of Iowa!! They had little samples of several recipes included in this cookbook that they had put together years ago. This is actually the second edition. It sounds as if a third edition is soon to go to press! I was happy not only to taste the samples, but to buy a cookbook for myself. I also picked one up to include as a giveaway prize at the November meeting of our local Celiac Group!!

Okay, this post has gotten really long. It has been a long time since I've written much, so I may have gotten a bit carried away. It has been fun sharing with you our experiences from the conference..

Susie, me (Margo) and Edie (my mom)

Don't Breathe on Me - You're Sick!

This is me today.  I've been sick since Wednesday.  It's my fault, really.  I got cocky.  My husband had bronchitis a few weeks ago and several of the ladies I work with have had various illnesses over the past few weeks.  Just Tuesday I was saying that I felt pretty fortunate that I hadn't caught any of the yuck that's been going around.  Yep, too cocky!  I should have known better.  Wednesday morning I woke up feeling like crap.  I went to work anyway, but called in Thursday and Friday.  When you live with autoimmune diseases, your immune system is obviously compromised.  So you learn to take extra precautions.

You may laugh, but that picture of The Big Bang Theory's Sheldon Cooper is not far off from the truth!  I know there is a huge debate out there about whether people should get the flu shot or not, so I may not be popular when I state that I DO get the flu shot each year.  I am living with hypothyroidism and Celiac Disease.  My immune system is very compromised.  Chronic fatigue and illness are not strangers to me, unfortunately.  As much as I wish they'd go away and I take precautions to stave them off as much as possible, I still get sick.  I take my probiotic and extra vitamin supplements because I am deficient due to my damaged gut.  I try to stay away from sick people as much as possible, though I'd pretty much have to live in an airtight plastic bubble to truly be able to accomplish that.  My dear husband even slept in the living room when he was the sickest and most contagious with bronchitis.  Although, in large part due to the fact that he couldn't breathe when he was laying down, but he also was very aware of the fact that I could easily catch it from him.

Recently I've been very careful to make sure that I am getting plenty of sleep at night, plenty of fluids during the day, taking my probiotics and vitamin supplements and everything I can think of to try to stay healthy - or a chronically ill person's version of healthy anyway.  But, sometimes, no matter how careful you are and how many precautions you take, it is just going to happen.  You are going to get sick.  That is the thing about living with autoimmune diseases.  You are extra susceptible to everything you come into contact with.  Sometimes, no matter that you've done everything right and everything you can to prevent it, you are still going to get sick.  My illness this week?  A simple, every day, common cold.  Yup!  A little, itty-bitty thing like the common cold has done me in for the past several days.  I have spent the majority of time since I got home from work Wednesday night in bed, sleeping.  Yet, even today, I still feel thoroughly exhausted.  I hadn't showered (EWWWWW) since Tuesday morning - I haven't had the energy to be able to do it.  I finally HAD to do it today!!  While the steam from the hot shower opened my sinuses and the hot water pelting my skin helped ease my body aches, just taking a 5 minute shower completely wiped me out.  I took the shower 2 hours ago and still feel like I need a nap.  It is taking everything in me to sit down and write this blog post.  I began writing it 45 minutes ago and have had to stop many times to try to remember what it was I was going to write.  

When I began writing this blog, I was determined that I would be honest and open with my readers.  That means even when I am feeling crappy.  We all go through times like this and we all go through feeling isolated because of our illnesses.  I share this today not to have people pity me or to garner attention.  I abhor this kind of attention.  I am writing this today so that you know you are NOT alone!  It sucks.  A simple illness that someone without an autoimmune disease may take only a couple of days to get over can take us more than twice as long.  Even when we begin to feel better, our bodies seem to still take forever to fully recover from the last illness and then we're catching something else.  It can feel never-ending at times.  That is frustrating to no end.  And it is difficult for people who don't live with a chronic illness to understand what we are going through or why it takes us so much longer to heal from the same illness that they got over in 24 hours.  We ask for their understanding, patience and compassion toward us.  We need to also exercise patience and understanding with them when they don't get it.  They don't live with what we live with, so they have no way to truly know what we are going through.  We need to patiently educate them as to what we are dealing with.  Don't beat them over the head with information or even expect that they will understand immediately.  Thank them for caring when they ask questions and answer their questions honestly.  When they offer a platitude such as, "Feel better soon." because they don't realize that you go through most of your life feeling like crap, don't scoff at them.  They are being genuine in their limited understanding and knowledge of chronic illness.  Again, let them know you appreciate that they care about you and what you are going through.  It is hard enough finding people who will try to understand and who will be supportive of what we are going through.  We do NOT want to alienate those who are making that attempt even though they may say the wrong thing.  Remember, they are trying.  That is huge.  And that opens the door to being able to educate them, kindly, not treating them as if they don't know anything.  I didn't know anything about Celiac Disease before I was diagnosed.  Not a single thing.  I would have said something ignorant, though it wouldn't have been intended to be.  If we want others to be kind, compassionate and understanding with us, we have to be the same toward them.  We aren't the only ones who get frustrated with the limitations our illnesses put on us.  Those who love and care about us get frustrated, too.  Because they want to spend time with us.  Because they hate seeing us sick.  Because they wish we could do the things we used to be able to do.  

Whatever chronic illness you are living with, you are not alone.  There are many others of us out there who understand and are walking a similar path.  I feel fortunate to have a really strong support system.  And, I feel like living with hypothyroidism and Celiac Disease has made me more compassionate and understanding toward others with chronic illness and just to other people in general.  I hope it has, anyway.  No matter what path we are on in this life, we all want, need and deserve kindness, compassion, understanding and support.

For more information about Celiac Disease visit https://www.beyondceliac.org

To donate my birthday or YOUR birthday to Charity Water visit https://www.charitywater.org