Move It or Lose It Monday – Sit and Be Fit

Move it or lose it monday sit and be fitHappy Move It or Lose It Monday, Warriors! I hope everyone had a pain-free weekend. So, we’re always talking about the need to Move It or Lose It. We know that for our bodies, sitting or laying in one spot for too long can cause stiffness amongst other problems. We need to work to keep our bodies limber and healthy. But, some days, we just can’t. Some days our mobility is too impaired no matter how hard we want to push through. Sometimes the pain or fatigue won’t even let us take a walk around the block.

This is my secret weapon on those days.

The Sit and Be Fit Program.

I’m sure you’ve probably heard about it or seen it on your local PBS station before. I have a backlog of these episodes saved to my DVR for days when I can’t perform my usual fitness activities.Sit and Be Fit

In 1985, registered nurse, MaryAnn Wilson founded Sit and Be Fit.  She got the idea for Sit and Be Fit after observing older adults in her high impact aerobics classes become injured and frustrated. Sit and Be Fit is and exercise program that is designed to address the specific needs of older adults and individuals with limited mobility. The results and reception of the program have been overwhelmingly positive.  In 1987 the first season of Sit and Be Fit was produced and aired on PBS and has been airing nationally ever since.

Sit and Be Fit is a non-profit organization committed to healthy aging advocacy. We believe everyone has the right to feel good and age well. We empower people to improve their lives through safe, effective, media-based health and wellness programming.

The Sit and Be Fit program can be done entirely while sitting down, though some moves do provide the option to sit or stand. The exercises incorporate weight and resistance training, flexibility, light cardio, and some brain and nerve training (like hand eye coordination and pattern memorization).

sit and be fit workout

Founder Michelle kicks AS with Sit and Be Fit

I personally feel good when I do the Sit and Be Fit workouts because I know that even though my body has tried to put limitations on me with pain and fatigue, I still performed some fitness activity. I worked to keep myself active and healthy.

I highly recommend every chronic illness warrior or anyone with limited mobility try out the Sit and Be Fit Program.  Add it to your arsenal of health and fitness activities. Never stop fighting for your health and mobility!

Items you may need for the workouts:

Light Weights

Exercise Ball

Resistance Bands

You can find episodes of the Programs Here. Here. And Here. Or on your local PBS Station.

Learn More about Sit and Be Fit Here.

Are you familiar with the Sit and Be Fit Program? Have you tried it out? Tell us what you think in the comments!

Keep Kickin AS, Warriors!

Gentle Hugs and Extra Spoons to you all!

extra spoons to you all kickinas.com

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites.
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Move It or Lose It Monday: The Non-Workout

img_8985Welcome to Move It or Lose It Monday, Warriors! Oftentimes we want to stay active, but our bodies just won’t allow us to workout because we are in a flare or our fatigue is bad. But just because we can’t workout, doesn’t mean we can’t still be active. And on those days, it’s even more important for us to get up and move around. Or maybe you just really hate the idea of “official exercise,” but know the importance of staying active.

So here is a list of activities to stay active when you can’t workout.Housecleaning-on-cleaning-free-stock-image-and-clip-art

  1. Do housework. Performing household chores keeps you active. Gather the laundry  and load it into the wash. Sweep, dust, mop, vacuum, clean the bathrooms and the kitchen. All tasks that require movement.
  2. Garden and do yard work. Gardening is a task that is surprisingly active. Pull weeds, turn dirt and mulch, dig out holes for your plants. Get out your old push mower and run it over your lawn. Rake leaves. You will be working up a sweat in no time.
  3. Take your dogs for a walk or play a game of fetch. Dogs are great companions for staying active.
  4. Play with your children outside. Kids keep you on your toes all day long. Take them outside to run around and get in on the fun. Go to a park to swing and climb on the jungle gym. Join in on their games of tag. Hula-hoop along beside them. The activity will be good for you and for them.
  5. Play an active game on Wii or Kinect. If the weather outside isn’t conducive to outside play time, break out the video games. Sports games and dance games keep you moving.
  6. Wash your car, and I don’t mean to run it through the automated wash.
  7. Play a sport. Break out the old sports gear. Shoot some hoops. Play catch. Kick around the old soccer or kickball.
  8. Go dancing even if it is just around your house. Dancing to your favorite music is Dancing-dance-clipart-4-imagegood for the body and the soul.
  9. Take Tai Chi. Tai Chi is one of the most recommended activities for people with chronic illness and chronic pain. You can often find classes at activity centers in your town. Or get a Tai Chi DVD to follow along at home.
  10. Go for a swim. Swim some laps. Do water aerobics. Play water sports. Splash around with your kiddos. Swimming is a great activity for chronic conditions because it is very low impact.
  11. Walk to places instead of driving. Add more activity into your day by simply walking to your destination instead of driving. Walk the kids to school in the morning. Walk to work. Walk to the grocery store. Get those steps! Track your steps with a Fitness Tracker.
  12. Take the stairs instead of the elevator. Simple and easy way to gain a little more activity in your day.
  13. Stretch or do Yoga. Stretching or doing yoga keeps you loose and limber. Very important for AS Warriors!

Reminder: I am not a doctor and am not providing medical or fitness advice. I am simply sharing my experiences as an AS Warrior who is trying to live an active life, while encouraging others to stay active as well. Always consult your doctor before beginning an exercise regimen.

Do you have other ideas to stay active without “working out”? Tell us in the comments.

Keep Kickin’ AS!

Gentle hugs and Extra Spoons to all!

spoons-19.png

We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites.

Move It or Lose It Monday – Get Those Steps

move it or lose it monday get those steps kickinas.com

Welcome to Move It or Lose It Monday, AS Warriors! This is a new blog series where we will be encouraging you to be active with Ankylosing Spondylitis. We will be posting work out reviews, workout motivation, and tips and tricks to become more active.

First, we need to post an advisory that I, the author, am not a doctor and this website is not run by healthcare officials. Therefore, we at KickinAS.com are not providing medical advice or care, nor are we providing fitness advice. We are simply sharing our experiences as AS Warriors trying to live active lives while encouraging others to do the same. Always consult your doctor before beginning an exercise regimen.

Today we are starting out with the most basic fitness movement. Walking. It is recommended by the American Heart Association that adults get a minimum of 10,000 steps per day to maintain good health. If you work a desk job or are on disability 10,000 steps can be surprisingly hard to achieve unless you make achieving those steps a priority. Get those steps!

Here are some things you can do to reach your 10,00 step goal:

  • Take your dog for a walk.
  • Park further away from your destination.
  • Walk around the track at a nearby school or park.
  • Play outside with your children.active with ankylosing spondylitis kickinas.com
  • Walk on a treadmill.
  • Get moving on an elliptical.
  • Go for a stroll around the neighborhood with your significant other.
  • Go hiking.
  • Walk around the mall.
  • Take the stairs instead of the elevator.
  • If the weather is bad outside walk laps around the inside of your home instead of walking outside.
  • March in place while watching your favorite show or movie.
  • Walk to your destination instead of driving.
  • Go dancing.
  • Take a short walk during your lunch break.

These are just a few ways that you can get more steps in during the day to help you stay active with Ankylosing Spondylitis. I highly recommend investing in some form of fitness tracker, such as a FitBit.

The more we move the longer we will be able to move. Staying active helps keep off or take off weight that can negatively affect our joints and spine and it keeps us fit and flexible.

Post your workouts on Instagram and tag us with #activewithankylosingspondylitis and #kickinas to join the movement to Kick AS!

Keep Kickin’ AS, Warriors! Go get those steps!

Extra Spoons to you all!

extra spoons to you all kickinas.com

We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites.

It’s Okay Not to Be Strong Every Day

img_8253As a woman, and especially as a woman who battles a chronic illness, I have this overwhelming need to appear strong and appear like I have it together every day. I know that many of you can relate to this. A need to be strong for the people around you and a need to project this air of confidence, capability, and good health.

If you’re like me, you want to make sure that you make everyone else feel good. You check on them. You want everyone else to be okay. You don’t want your illness to affect the people around you, so you put on a charade. You say you feel fine even when you don’t. You go out and participate in activities even when you don’t really feel up to you it. You take care of everyone and everything even though you can barely take care of yourself and are barely holding everything together.

But we don’t have to be strong all the time. We don’t have to do everything ourselves. It is okay to not be okay. It is okay to not be strong all the time. It is okay to be real with the people in your life and tell them that it’s not a good day if you’re feeling bad. Chronic illness is not something that we can just pretend doesn’t affect our lives and we shouldn’t have to.

Ask for help. Listen to your body. Be honest about how you are feeling. Rest when you need to. Take care of yourself. Put yourself first once in a while. Rely on the people in your life who love you and are willing to be there for you.

Remember it is okay not to be okay. It is okay to not be strong every single day. Remember this the next time you’re about to tell someone you are fine when you are really in pain.

Keep Kickin’ AS!

Gentle Hugs and Extra Spoons to You All.

blue-spoons-clip-art


How to Survive the Holidays with a Chronic Illness

Holidays are stressful enough without having a chronic illness. And just getting through a regular day with a chronic illness is difficult enough without the added stressors of the holidays. So here is your Holidays with a Chronic Illness Survival Guide.

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Dress for Comfort

Sure there will be family pictures and selfies and surprise snapshots, but dress for your comfort. If you know that tags, tight jeans, wool, turtlenecks, etc. cause you irritation don’t wear them. Opt for something that is stylish and comfortable like leggings and a cute flowy top or these comfortable and stylish options for men. If you know that you are cold or warm natured or that your mom tends to keep her house an uncomfortable 80 degrees, dress accordingly.

Be Prepared to Fight the Cold and Germs

tissues and hand sanitizerIt may be the holiday season, but it is also cold and flu season. Bring along pocket sized hand sanitizer and tissues. Also, fight the cold weather and any drafty houses with scarves, gloves, and layered clothing. Cold air, drafts, and germs are a chronic illness warrior’s mortal enemy.

to do list clip artPlan Ahead

Planning ahead can take a lot of the stress out of the craziness of the holidays. That extra stress can undoubtedly lead to a flare. Have a plan and a to-do list to keep you organized and on schedule. Invest in a planner!

Rest Up

And while you are planning, schedule in some down time to allow yourself to rest. Down time will actually allow you to slow down and enjoy the time with your family and friends so much more. If you know you have a big event that will use up a bunch of spoons, try to rest more the day before.

Ask for Help

It’s common to have trouble asking for help, but it is a necessity for a Spoonie to survive the holidays.

If you find yourself hosting the holiday festivities go potluck and ask everyone to bring a dish or two.

Ask for help cleaning up afterwards.

Enlist a friend or two to help with wrapping gifts. Put on some holiday movies or music, pop open your favorite bottle of wine (or whatever beverage doesn’t worsen your symptoms) and make a day of it.

Pace Yourself and Be Realistic

During the holidays we want to say YES! We want to be involved in all the fun activities, How to Survive the Holidays with a Chronic Illness pace yourselfbut we need to be realistic and pace ourselves. If your mailbox is flooded with invites, don’t say yes to all of them if you know that it will wear you out and send you into a flare. Don’t sign up for every Holiday fun run, every Caroling excursion, don’t volunteer to sew all of the costumes for the Christmas play, and volunteer to go on the hike to cut down the Christmas tree. Limit and pace yourself to ensure that you can enjoy the events that are the most important to you.

Shop Online

Avoid the crowds and long lines that can do a number on our bodies and emotions by shopping for gifts online. Save yourself the physical pain and maintain your sanity.

Bring Your Own Food

How to Survive the Holidays with a Chronic Illness Bring Your Own FoodIf you’re going to someone else’s house to stay for the holidays or holiday meals bring along your own food if you have special dietary restrictions. It will keep you healthy and you will avoid a flare up if you maintain your diet. Let the host no ahead of time that because of your health needs you will bring your own meal. Your host will undoubtedly understand and appreciate the heads up. And they will be grateful that you didn’t expect them to cater to your specific needs.

Listen to Your Body and Don’t Feel Guilty

As always, the most important survival tip is to listen to your body. Take time to care for yourself and your body’s needs. Rest when you need to rest. Eat the foods that make your body happy. Don’t feel guilty if you can’t stay up late chatting with family. Don’t feel guilty if you need to sneak off for a quick nap before you holiday meal. Taking care of yourself is always priority number one, even during the holiday mayhem!

Do you have more tips to help us all survive the holidays with our chronic illnesses? Leave your tips in the comments.

Happy Holidays, Warriors!

Keep Kickin’ AS!

Extra Spoons to You All!spoons-19.png

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.
We are a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites.

Possible Complications of Ankylosing Spondylitis

Ankylosing Spondylitis (AS)is a chronic, autoimmune type of arthritis that triggers ankylosing spondylitis backpainful inflammation in the body. Most commonly, AS affects the back, buttocks, and pelvic region, but symptoms can spread to other joints and organs within the body as the disorder progresses. Also note, that this disorder affects every individual differently and in some cases the symptoms can begin in the peripheral joints (joints not located in the spine such as knees, ankles, wrists, fingers, etc). Uncontrolled inflammation can contribute to other complications throughout the body ranging from mild to severe and disabling.

Possible complications are:

  1. Fatigue – Fatigue and tiredness is one of the most common symptoms of Ankylosing Spondylitis. The cause of the fatigue is the higher levels of inflammation within the body and the body’s constant fight to try to keep the inflammation under control. Fatigue is often labelled patients as the most debilitating of their symptoms. Some have described the Fatigue to be similar to the fatigue that accompanies the flu. However, unlike the Flu, you do not recover from AS in just one or two weeks. TNF-inhibitors prescribed by rheumatologists as well as regular exercise can help to lighten the load of the immune system, thereby relieving the fatigue and improving the patient’s quality of life.
  2. Reduced flexibility – as with most kinds of arthritis, AS patients can experience reduced flexibility in some or all of their affected joints. The damage to joints caused by inflammation can restrict the movement of muscles and joints as the disease progresses. With AS patients, a Yoga-Poses-to-Help-Ankylosing-Spondylitis-03-722x406particular concern is that this will happen within the spine and that the spinal vertebrae will begin to fuse in the lower back, causing a permanent slumped forward position. In some cases, this can lead to permanent disability. It is important for AS patients to maintain an active life to promote and encourage their joints’ continued flexibility. Consult your physicians for approved exercises and stretches to maintain and increase flexibility safely.
  3. Eye Problems – It is important for AS patients to maintain regular check-ups with ophthalmologists as inflammation can spread to the eyes. Inflammation of the eye can be a symptom of Uveitis or Iritis, depending on the exact location of the inflammation within the eye. Let your doctors know if you experience eye redness, light sensitivity, eye pain, blurred vision, see spots, or experience unusual puffiness around the eyes. Ophthalmologists are medical doctors and you can use your regular medical insurance for their visits. Ophthalmologists will do thorough examinations of your eyes to ensure that you maintain proper eye health and they can monitor the affects that Ankylosing Spondylitis may have upon your eye health and vision.
  4. Social and Employment Problems – Ankylosing Spondylitis can affect a person’s social and public life as it progresses. AS can limit the type of work a person can do, especially when it comes to physical labor. Some AS patients may be able to work a full 40-hour week, some can only tolerate a few hours a day, and others may not be able to work at all, depending on how advanced their AS is and the jobs that they are expected to perform. Depending upon the AS patient’s limitations, they may eventually need to file for disability. AS patients should learn and focus proper sitting and standing posture, and take frequent stretching breaks if they spend a large portion of their time seated at a desk to prevent any further damage. Taking breaks to move around and stretch will prevent joints from locking up or becoming stiff. This also helps to keep the blood flowing and can assist with fatigue. It can grow increasingly difficult for people with AS to get out and socialize as their energy gets depleted from daily tasks. Chronic pain can be isolating as people experiencing the pain are less likely to visit friends. This isolation can lead to depression. Joining support groups, socializing online, and working to maintain friendships and relationships can feel draining, but it is important to do so in order to maintain your mental and emotional health.
  5. Gastrointestinal Disorders – AS inflammation can spread to the intestinal tract causing stomach pain and digestive issues. Symptoms of inflammation within the intestinal tract include: stomach pain, stomach ulcers, diarrhea, constipation, and problems digesting. In severe cases, Ankylosing Spondylitis patients can also develop Irritable Bowel Syndrome, Crohn’s Disease, or Ulcerative Colitis. It is important to discuss any of these symptoms with your doctor. They may provide you with dietary advice to limit the symptoms of these disorders.
  6. Osteoporosis – Osteoporosis is a medical condition in which the bones become brittle and fragile from loss of tissue. The bone becomes less dense than normal osteoporosis_s1_bone_densitywhich leads to the bones being weak and prone to breaks and fractures. When this disease develops in the spines of Ankylosing Spondylitis patients (caused by the severe inflammation within their body) it increases their risk for spinal injury. AS patients frequently develop Osteoporosis, even in the early stages of the disorder.
  7. Increased risk of heart disease – Cardiovascular problems that Ankylosing Spondylitis may contribute to include:
    1. Aoritis- Aortitis is inflammation of the aorta, and it is representative of a cluster of large-vessel diseases that have various or unknown etiologies. While inflammation can occur in response to any injury, including trauma, the most common known causes are infections or connective tissue disorders. Inflammation of the aorta can cause aortic dilation, resulting in aortic insufficiency. Also, it can cause fibrous thickening and ostial stenosis of major branches, resulting in reduced or absent pulses, low blood pressure in the arms, possibly with central hypertension due to renal artery stenosis.
    2. Aortic Valve Disease – Aortic valve disease is a condition in which the valve between the main pumping chamber of your heart (left ventricle) and the main artery to your body (aorta) doesn’t work properly. Aortic valve disease may be a condition present at birth (congenital heart disease), or it may result from other causes.
    3. Conduction problems – Your heart’s rhythm is its pace or beat. Conduction is the progression of electrical impulses through the heart which cause the heart to beat. You can have a conduction disorder without having an arrhythmia, but some arrhythmias arise from conduction disorders.
    4. Ischemic Heart Disease – Ischemic heart disease is also known as coronary artery disease or “hardening of the arteries.” Cholesterol plaque can build up in the arteries of the heart and cause “ischemia,” which means the heart is not getting enough blood flow and oxygen. If the plaque blocks an artery, a heart attack can result.heart
    5. Cardiomyopathy – Cardiomyopathy is a condition where the heart muscle is abnormal. The main types of cardiomyopathy include dilated, hypertrophic and restrictive cardiomyopathy. Cardiomyopathy makes it harder for your heart to pump and deliver blood to the rest of your body. Cardiomyopathy can lead to heart failure.

It is important to take preventative measures to reduce the risk of cardiovascular problems. Though this applies to every individual, not just AS patients. Regular exercise and a healthy diet should be included as part of the treatment plan for Ankylosing Spondylitis. It also helps to avoid tobacco use and maintain a healthy weight.

  1. Amyloidosis – Amyloidosis is a rare disease that occurs when a substance called amyloid builds up in your organs. Amyloid is an abnormal protein that is usually produced in your bone marrow and can be deposited in any tissue or organ. Amyloidosis can cause symptoms such as weight loss, water retention, tiredness, and in some cases tingling of the hands and feet.
  2. Cauda equine syndrome – This extremely rare condition is a bony overgrowth caused by inflammation. It leads to pressure and swelling at the end of the spinal cord. The swelling can compact the nerves in the lower part of the back. If left untreated Cauda Equine Syndrome can lead to paralysis.

There are links provided within this blogpost to provide more information for some of these listed complications. Please consult your health practitioners with any questions or concerns you may have.  It is important to be your own health advocate when you have a chronic illness. You know your own body better than anyone and you know when there is something that is off, wrong, or not working the way it should.

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

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
This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

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

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

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

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.

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

This website is not run by medical professionals and is solely the experiences of one Ankylosing Spondylitis Warrior who wishes to help and inspire others who suffer with the complications of autoimmune diseases.