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ANKYLOSING SPONDYLITIS IS…

ANKYLOSING SPONDYLITIS IS…

  • an autoimmune disease.
  • not curable.
  • genetic.
  • more common than multiple sclerosis, cystic fibrosis, and Lou Gehrig’s disease combined.
  • more than just a bad back.the spoon theory
  • not just a man’s disease.
  • a heartbreaking diagnosis.
  • referring to my energy as spoons.
  • a daily battle against my own body.
  • worrying about pushing my body too hard or too little.
  • pretending not to be in pain.
  • a pain in the butt.
  • weekly injections.
  • monthly treatments.
  • having a whole pharmacy of medications in your purse.
  • getting exhausted and out of breath after walking from one room to another.
  • feeling pain in places on your body you didn’t even know could feel pain.
  • sleepless nights.Ankylosing Spondylitis Pre-Existing condition
  • being given unsolicited health advice by people who mean well but have never even heard of AS.
  • a pre-existing condition.
  • a chronic illness without a cure.
  • taking a bath because you don’t have enough energy to stand for a shower.
  • feeling like a burden.
  • canceling plans or not making them in the first place because of your ever-changing health.
  • unpredictable flares.
  • a lifetime of doctors’ appointments and treatments.
  • feeling like you got hit by a truck, but pretending like you are okay.
  • being told “You don’t look sick!”
  • being told “It’s all in your head.”
  • hearing people say, “My back hurts too.”
  • hoping you don’t pass the gene on to your children.
  • missing out on social events.
  • never knowing if your pain is from moving too much or too little.
  • getting glared at for parking in the handicap spot because you don’t look handicapped.
  • a pain in the neck, and back, and butt, and ankles, and knees, and ears, and hands, etc, etc, etc…
  • NOT GOING TO DEFINE ME!IMG_3510
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Guilt, Shame, Regret, and Hate

guilt_carry-manGuilt is the mental/emotional symptom that is never addressed within the chronic illness community. We talk about it amongst ourselves in secret in our private, closed online communities, but very rarely ever address it with the outside world — our families and friends.

We feel guilty for being sick. For being a burden. For not being able to accomplish tasks that people want us to do. We feel guilt for canceling plans. For not being able to support ourselves. For not being able to support our families. Guilt for being a shell of our pre-illness selves. We feel guilt for being unreliable, undependable. We feel guilt for not being strong enough, energetic enough… Just not enough. I’ve seen women in these support groups call themselves “a low value person.” We feel guilty for not being the spouse or parent that our families deserve. We worry that they resent us and regret the vows of “in sickness and in health.”

We wonder if we could be pushing even harder, doing even more, ignoring the pain, pushing through the fatigue, even though we already feel like we are at the end of our ropes.

We avoid dating if we are single because we don’t want to burden a new person with our disease. We avoid having children because we don’t want to pass the gene on to future offspring.

We regret the friendships that we have lost because we are no longer as active and social as we once were. We regret the fact that we watch our children go through the same things as us when they are diagnosed with our illness too.experience-emotions-2

We feel ashamed of the amount of money that is spent on our health insurance, doctor’s visits, ER visits, medications, and treatments when we know that money could have been used on so many other things.

We hate that we have to ask for help on such simple things as opening a jar, tying our shoes, washing our hair. We hate that family gatherings have to take our needs into consideration. “Can’t go to the amusement park, because Jane can’t ride the rides anymore.” “Can’t go to that State Park for a hike, because Joe can’t walk that far.”

We hate that it is so hard for people to understand our illnesses. We hate that we barely understand our illnesses and what is going on with our bodies. We hate that our doctors don’t have answers or cures. We hate that we can’t predict what is going to happen. Will we have a good day or a bad day? Can we RSVP to that event? How are we going to feel on that day?

What I want people to take away from this blog, other than just the “me too… someone else gets how I feel…” I want our families and friends to realize that it isn’t just the physical symptoms of our disease that we battle every day. There are so many mental and emotional things going on inside of us. We hate feeling that we are letting you down. We hate feeling like we are a burden that you have to carry through life and take care of us. And these thoughts and feelings are just the tip of the iceberg. I didn’t even touch on the loneliness and depression that can accompany chronic illness. I’ll save that for another day.

Be gentle on us. Be forgiving and understanding. But be our cheerleaders too. Let us know that we are still loved. That we are still hug.jpgcapable and that you still believe in us.

And chronic illness warriors, be gentle on yourselves. You are fighting a battle that only you understand and only you can fight.

Fight on and Keep Kickin’ AS!

XoXo  Michelleblue-spoons-clip-art

 

Fatigue

fatigueFatigue: extreme tiredness, typically resulting from mental or physical exertion or illness.

I haven’t been blogging or keeping up with this website, my day job, working out, or my novel writing lately. My fatigue has been debilitating. It makes it very difficult to concentrate or exert any energy or even feel motivated to do anything. I even got out of breath just trying to get dressed a few days ago.

Unfortunately fatigue is a symptom of Ankylosing Spondylitis and most chronic illnesses that people just don’t understand. People within the healthy community say things like, “Yeah I am tired today too,” or “It must be nice to take a nap.” What people who do not suffer from fatigue don’t understand is that this isn’t just being tired from not getting enough sleep the night before, or having physically exerted oneself. This is all day, everyasleep in spaghetti day, feeling like you have the flu, can barely even keep your eyes open for more than thirty minutes at a time, can’t stand up straight, might fall asleep at the dinner table face first into your spaghetti plate kind of tired.

I had my fatigue mostly under control until I was off my Enbrel back at the end of May. When that happened everything just went downhill. Of course, I am back on my Enbrel now, so everyone expects that I will be back to full power, but it takes time to build back up in your system, and sometimes even if you were full of energy the day before you won’t have any the next day. This of course goes back to the Spoon Theory.

The reason that fatigue is so prevalent amongst people with autoimmune disorders is because our bodies are literally attacking themselves. Our immune system has been tripped into thinking that there are bad foreign substances within our bodies that they must defend us against. Just like when you are sick, but this is when we are healthy. The immune system is attacking healthy cells and actually making us ill.

Fatigue is not in our heads. We are not being lazy. We don’t just need to get more sleep at night or take a nap to be refreshed. We wish we could wake up after a full night’s rest without being tired. Our bodies just have other ideas. Until there is a cure for whatever chronic illness we suffer, we will still have days, weeks, and months where we just can’t find the energy to accomplish what we desire to do.

Be patient with us and trust that we wish we weren’t tired all the time.

Gentle hugs and extra spoons to all my readers… XoXo

spoons-19.png

Enbrel Injection Day

Today I received my four-weeks supply of Enbrel from Lumicera. Every four weeks I give them a call and they deliver my medication right to my door. Enbrel Delivery

The medication arrives packaged in a cooler with ice packs to keep the medication cool. IMG_2928(Enbrel is supposed to be kept refrigerated.) Lumicera will also provide me with other supplies if I need, such as travel cases for the medication, alcohol swabs, and sharps containers to dispose of my needles.

I use the pre-filled syringes, but they also offer an auto-injector pen and multi-dose vial. IMG_2933It’s up to you and your personal choice which you choose to use. I find the injector pen to be more difficult to use and more painful.

Enbrel is injected into the lower abdomen or the upper thigh area. I alternate the left and right side of my abdomen. IMG_2940

 

 

 

Pain wise the injection just pricks a little bit like any shot. If you leave the syringe out of the fridge for about thirty minutes to allow the Enbrel to warm up a little the shot stings less than when it is cold.

Enbrel® (etanercept) is a biologic / Tumor Necrosis Factor (TNF) blocker that affects the immune system. It is used to treat 5 inflammatory conditions. According to the Enbrel website, Enbrel is shown to be effective in about 3 out of 5 adult Ankylosing Spondylitis patients at 6 months. Clinical responses were seen at 2 weeks in 46% of patients, with 59% of patients receiving benefit within 8 weeks.

As mentioned above Enbrel is a medicine that affects your immune system which means that it can lower the ability of your immune system to fight infections.

Enbrel can cause serious side effects including: New infections or worsening of infections; hepatitis B can become active if you already have had it; nervous system problems, blood problems (some fatal); new or worsening heart failure; new or worsening psoriasis; allergic reactions, and autoimmune reactions.

The most common side effects include: Injection site reactions and upper respiratory infections.

For me, Enbrel has been life changing. Before starting Enbrel, I was on Methotrexate, but it made me constantly nauseous and elevated my liver levels. I’ve now been on Enbrel for about two and a half years and have mostly been able to return to normal living. I’m able to work regularly, work out, and socialize with friends and family. I occasionally still have bad days, but not nearly as frequently as I used to. I began feeling better within the first week of taking the medication, but it did not work miracles overnight. It is only within the last few months that I have felt like my old self. I was able function fairly well over the last couple years, but still had frequent bad days.

Enbrel may not work for everyone and it is not a cure. Ankylosing Spondylitis is different for everyone and the same treatment will not work for each patient. It may also stop working at which point you will need to speak to your Rheumatologist about a new treatment regimen.

For more information visit Enbrel.com

 

Difficult Activities — A Complied List

About a year ago, I polled a Facebook Ankylosing Spondylitis group that I belong to. (Anklosing Spondylitis for Women)  I asked them what some activities are that they find difficult/painful, if not impossible to do, because of their Ankylosing Spondylitis symptoms. What every day activities that healthy people do every day without thinking about it — taking their mobility and capabilities for granted. Not realizing that they could wake up one morning and suddenly, because of a change in their health, this basic activity has become challenging. The following is a summary of the responses from the individuals who participated in the poll.

Hygiene and Self-Care:hygienic-clipart-15

-Drying, Styling, and Brushing Hair

-Putting on socks and underwear

-Shaving

-Squeezing bottles for bath products

-Getting in and out of the tub

-Putting on bras, underwear, pants

-Tying shoes

-Clipping toenails / Painting Toenails

-Wiping, after using the toilet

-Wearing cute shoes and/or heels

-Popping pills out of foil / opening medication bottles

-Buttoning items

Housecleaning-on-cleaning-free-stock-image-and-clip-artBasic Household Activities and Chores:

-Peeling veggies & slicing veggies

-Draining pasta

-Squeezing Lemons or Limes

-Carrying groceries

-Getting food out of refrigerator and oven (or putting it in)

-Carrying groceries

-Washing the dishes.

-Vacuuming / sweeping / mopping

-Ironing clothes.

-Locking/unlocking a door etc.

-Opening jars and bottles

-Standing to cook

-Shopping trips

-Picking up stuff from floor

-Using a manual can opener

-Gardening

-Cooking

-Carrying out the trash

-Changing bed sheetsCleaning-clip-art-10

-Doing the laundry

-Taking Care of pets

-Cleaning tub/toilet

-Running Errands

-Getting items from top or bottom shelves

-Yard-work

-Using power tools

-Climbing ladders or step-stools

-Changing light bulbs

-Hanging clothes

Physical Activities:

-Being able to jump right out of bed in the morning.Clip-art-women-walking-workout-clipartPhysical-education-clipart-4

-Going up and down the stairs

-Walking

-Sitting up

-Standing more than 10 minutes

-Sitting in a car

-Getting in and out of cars

-Stepping off a curb

-Getting out of Chairs

-Standing up from chairs / toilet

-Riding a bike

-Exercising

-Bending over

-Walking dogs

-Getting up off of the floor if fallen / or sitting on ground

Parenting:

-Playing with children 

-Piggy back rides

-Styling children’s hair

-Lifting a baby from a cribFamily-vacation-clip-art-clipart

-Carrying children

-Getting child in and out of grocery cart

-Pushing Child on Swing

-Carrying Children to bed and tucking them in

-Sitting in the stands to attend children’s sporting events

-Sitting through other types children’s programs/performances

Miscellaneous:

-Breathing

-Sneezing / Coughing

-Lifting a full glass of water

-Opening a bottle of water or soda

-Falling asleep

-Staying asleep

-Finding a comfortable position to sleep

-Rolling over in the bedRoad-travel-clipart

-Pressing the gas pedal while driving

-Turning neck to see while driving

-Driving in reverse

-Riding in the car for extended periods of time

-Using touchpads

-Holding on to items – things get dropped a lot

-Carrying a purse / briefcase / suitcase

-Doing ANYTHING in the morning

-Thinking clearly

Fun, Entertainment, Socializing & Relationships:

-Seeing a show or movie at a theater

-Snuggling with a loved one

-Trying on clothes while shoppingDancing-dance-clipart-4-image

-Having sex

-Going to events like rodeos, movies, etc…

-Working

-Keeping up when out with friends and family

-Attending worship services

-Performing in the choir

-Making plans ahead of time and sticking to them

-Laughing

-Writing

-Turning book pages

-Dating

-Hugging

-Shaking hands

-Attending fairs/ theme parks/ amusement parks with family

-Dancing

All of these items are difficult for the individuals who named them because of either pain, fatigue, or their lack of flexibility caused by Ankylosing Spondylitis.

Some people will be able to still do some of these things, some people can’t do any of them. Others can maybe do the activity one day, but no the next. Ankylosing Spondylitis affects each individual differently and is constantly changing.

Please feel free to share this list with friends, family, etc; to help spread awareness. Healthy individuals sometimes struggle to understand the difficulties that their chronic illness friends and family face. I hope that this list will bring light to the situation. It is also my hope that it will bring comfort to those who struggle with any of these activities as they realize they are not alone.

Do you agree with this list? Do you think anything needs to be added? Let me know in the comments!

Gentle hugs to you all. XoXo

blue-spoons-clip-art

World AS Day

Ankylosing Spondylitis awareness Today is World AS Day! Wear your blue today to raise awareness! If you’d like a special Ankylosing Spondylitis shirt to wear for next year, check out our shop! (Kickin’ AS Store) Don’t see exactly what you want? Let us know and we’ll create one for you!

Are there any awareness events happening in your town?

There’s none here. That will have to be my next big project. Creating a walk or other event.

I hope you have all the spoons you need to do all you desire this weekend!

Gentle Hugs! XoXo 💙💙💙

Does Your Rheumy Work for the Vampires Too?

The Rheumatologist's OfficeWent in for my three-month check-up with the rheumatologist today. Well, saw the nurse practitioner this time, actually. She is always so smiley and upbeat. I try not to judge her for it. I know it sounds bad, but it just makes me think, “You are not actually that happy to see me. You don’t really know me, so… take it down a couple levels.”

Of course, I’m never really in a very good mood by the time I see her, between struggles The Doctor's Scalewith the insurance company, which then turns into struggles with the receptionist, and then seeing my weight when they take me back for the exam. (Can’t I just give you a nice estimation of my weight like I do at the DMV? Haha)

Does everyone have as many troubles with their insurance company as I do? I swear every time I go to the doctor or try to refill prescriptions something is going on with my insurance that hinders whatever I am trying to get done. It’s a conspiracy!

vampire clip artBut I think the real conspiracy lies in the lab at the back of the office where they send me every visit to draw blood. Pretty sure the doctors are working for the vampires.

Now, obviously, I don’t really think that, but sometimes you just have to find a way to laugh through your appointments, especially the blood draws. I have small, deep veins that roll and unfortunately not all phlebotomists can stick me on IMG_2841the first attempt. Them digging around chasing my veins makes me want to pass out sometimes. Thankfully today she was awesome and I barely felt a thing.

The visit was good too. It was nice to say that I didn’t have any pain to complain about, and I’ve been sleeping well, exercising, working regularly. All such a change from my earlier visits where I could barely hobble into the office.

I always feel goofy and awkward when they wiggle my limbs around and poke and prod to check flexibility and sensitivity. Makes me feel like a Marionette.

The best part of my doctor’s visit though is that my Enbrel prescription got called in to Lumicera, so hopefully my delivery will arrive at the beginning of next week. Have to get back on it so that I stay feeling good!

Do you have to go check in with your rheumatologist every three months? What do you like and dislike about your visits? Do you also think your doctors are in cahoots with the vampires? Let me know in the comments!

Gentle hugs and extra spoons to you all! XoXospoonie

The Beginning of a New Life

Where to begin? Where to begin?hi

I’ve so much to say. It’s been so long since I’ve posted.

Well… right now I am loopy out of my mind on prednisonedoctor, but so energetic. I’ve gotten so much done this week with all this extra energy it is providing! But, I will get to quit the devil-pills tomorrow when I go back to the rheumy to start my Enbrel again. Ran out of refills and it’s my fault for missing a previous doctor’s appointment, but life has just been so crazy busy!

The Enbrel has been working for me, so I’ve been trying to make up for all the lost time when I was down and out for the count.

And one of the things I’ve been doing now that I’m feeling like an actual semi-healthy human being is really taking stock of where I am in life and where I want to be – particularly in my career. So, with that being said……

#KICKINAS LOGOIn 2014, I started this blog to help me cope with my Ankylosing Spondylitis diagnosis. I have now decided to expand upon the blog and the #kickinas that I use in my Instagram posts to create a company. From now on Kickin’ AS is a website and brand whose goal is to spread awareness of Ankylosing Spondylitis and inspire and inform AS patients and their loved ones.

This website will have my blog, of course, that I will now actually start updating again to talk about my own journey with the disease; it will have links to resources, recipes for autoimmune paleo meals, tips for family and friends who want to help their AS kickinas facebook picWarriors, and an ecommerce site that sells Ankylosing Spondylitis Awareness merchandise. 10% of the profits will go towards AS research – because WE WANT A CURE!

I’ve always wanted to find a way to help my community and to somehow do something good with this challenging illness. This new business/website allows me to make contributions to my chronic illness community and I get to use my passion for writing. What could be better than joining things that mean so much to me?

Right now the blog and e-commerce site are still undergoing some construction, but I hope you will take a look around anyway!

Thank you for your continued support in all of my CRAZY endeavors.

Gentle Hugs and Extra Spoons to you all! XoXo

blue-spoons-clip-art

My Positive Outlook

Once you replace negative thoughts with positive ones, you’ll start having positive results. – Willie Nelson

positive thinking three

On my Facebook and Instagram I am constantly preaching about “Keeping it positive,” “being kind,” and “spreading love.”

Some might question how it is possible for me to always be positive, to always focus on the good, when I live with a chronic illness and mental disorders. My answer would be that it is only through positive thinking that I manage to make it through life every day.

I could look at my life and say that “My life sucks. My body is literally killing itself. My brain is constantly tricking me into being anxious and depressed.” Or I can choose to see the silver-lining. positive thinking two

Instead of saying, “My life sucks” I can say “I get to wake up and live one more day. I have one more day on this Earth to try to change it for the better.” Instead of saying,” My body is literally killing itself and my brain is trying to trick me into being anxious and depressed,” I can say that “because of my pain and suffering I am more in-tuned with others.” I believe that is the real reason that I have been able to change from a pessimist to someone who believes in the power of positive thinking. I learned how to see my greatest challenge, the loss of my health, as a gift.

I always heard not to judge someone because you never know their struggles, their battles, but it wasn’t until I got sick that I really understood. I know that people don’t look at me and see someone who is sick and has a physical disability. People can’t look at me and see the pain that I suffer every day, because I am good at masking it. They might see my fatigue, but that is easily brushed off as laziness and/or being out of shape. My forgetfulness comes across as a failure to be responsible.

And now because of the judgement I receive from others, from the symptoms I experience, I am now compassionate. I no longer jump to conclusions about people. I no longer grow impatient when someone walks slower or takes longer to perform a task. I can see pain in the eyes of others who battle with invisible illnesses or who may simply be having a bad day.

Through my journey with this disease over the last couple of years I have learned that I can let the disease control me, my emotions, and my thoughts, or I can take control and be positive every day. Does that mean I am positive every day? No. I am not perfect and I do have anxiety and depression, after all. But I do my best to be mindful of the thoughts I put out into positive thinking onethe universe. There is something to be said for the Power of Attraction. The more positive I keep my thoughts the more positivity I see in the world and the easier it is for me to continue to have positive thoughts.

We are all in charge of how we think and feel, so choose positivity. Choose happiness.

 

OUT THERE

When I am in a bad flare… I 100% relate to Frodo… Feeling ugly and deformed and just wanting to be a part of the world again. Feeling so alone. Watching others living life – longing to belong amongst them. Just a regular person, living life unaware of what it is like to live a life of pain. Wondering what it must be like to live life carefree, without pain, without fear. Just wanting to experience one day like that…

Being chronically ill gives you a new sense of gratitude for old things you used to take for granted. Being able to get up and go out with friends. Being able to work a regular job. Walking around the mall or the park. Making plans without the fear of having to cancel because of your illness decided to flare up. Having friends and a social life at all.

When you’re stuck in bed on a flare day, all you want to do is feel well again. All you want to do is go outside and participate in life. Be a part of the real world, and not an observer. We watch our friends and family going about their days, progressing in their lives, making goals and accomplishing them, having children, getting married, participating in marathons and going to big events or going on vacations… All things that we fear we may never be able to do. Things we want to do. Things we plan to do whenever our body decides to cooperate with us.

On flare days we just sit and observe the whole word going by, continuing on without us as we fight against our own bodies. We live vicariously through social media, books, movies, Netflix binging television shows. We imagine ourselves as these characters and fantasize how amazing it would be to live their lives. It is an escape. It is how we cope until we have our chance to be OUT THERE.