Prevent Stress from Causing a Flare

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A couple weeks ago I asked the Kickin’As community to list the things that caused their flares. Overwhelmingly the most common response was stress. It has long been documented that stress can wreak havoc on our bodies and on our health. According to Web MD stress can cause “headaches, high blood pressure, heart problems, diabetes, skin conditions, asthma, depression, and anxiety.” In fact, I fully believe that the fact that I was living life in a state of high stress for an extended period of time is what triggered my Ankylosing Spondylitis Gene (HLA-B27) to become active when no other family members in living memory have been affected by the disease.

So obviously stress is bad for our health and the Kickin’ AS community is in agreement that it is a huge issue and trigger for our illness and sending us into flares. So, what can we do to prevent stress and limit the number of flares that we experience?

Stress Prevention Ideas:

Meditate

Mediation is a simple, fast way to reduce stress, and it can be done wherever you are. Meditation is a practice that has been around for thousands of years. Meditation can provide you with a tranquil mind and deep state of relaxation. There are many different types of mediation. Three that I practice and recommend for stress reduction and fpr meditation beginners are: Guided Meditation, Mantra Meditation, and Mindfulness Meditation. You can read more about the benefits of meditation and the different varieties here. If you are interested in guided meditation you can find audio meditation recordings on Spotify and Youtube.

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Yoga helps to reduce stress by:

  • Relaxing the body
  • Relaxing the mind
  • Helping you to breathe more effectively
  • Developing a connection between your mind and body
  • Helping you to understand how your mind works
  • Releasing emotional energy

Certain positions in yoga are more effective for releasing stress and tension. Find those poses here.

Exercise Regularly

In the words of the famous Elle Woods from Legally Blonde, “Exercise gives you endorphins. Endorphins make you happy. Happy people don’t kill their husbands. They just don’t.”

The endorphins created by exercise and physical activity are chemicals produced within the brain that act as natural painkillers. They also improve the ability to sleep, which in turn reduces stress. Even just five minutes of aerobic activity can begin to exhibit anti-anxiety effects within the body.

So, as we say on Mondays, Move It or Lose It! Perform some activity every day to help prevent and reduce stress.

Get Organized

Being unorganized is a huge stressor. Running late, never knowing where you are

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supposed to be at what time, unable to find what you are looking for in your house – it all contributes to stress.

Some tips to get organized:

  • Get a planner or use your phone calendar to track all of your appointments
  • Plan your day the night before. Review all of your appointments, meetings, etc so you know what you need to do and where you need to be.
  • Deal with paperwork and mail right away. Don’t let it pile up.
  • Clear out clutter in your house, at your office, in your car, and in your desk. Throw away or donate what you no longer need or use.
  • Prioritize your tasks and in which they need to be done.

Read your Holy Book of Choice

For me personally, this has become an every day activity. If you are religious spend a few minutes every day reading your Holy Book of choice, or in prayer, or practicing your religion in some way. You will achieve a sense of peace while spending time with your god(s).

Take Time for Self-Care

Take time at least once every month to practice self-care, whatever this may mean to you.

Self-Care Activity Suggestions:

You can find more suggestions for self-care activities here.

Journal

Start journaling to purge whatever stress you may be carrying with you. Journaling is a great creative outlet that allows you to focus on yourself and your inner-most thoughts. Use your journal in whatever way works best for you. Write about your day, write poems, write song lyrics, collect motivational quotes or Bible verses. Draw and doodle. Write diagonal across the page instead of following the lines. A journal is meant for you. Use it how you want.

Learn to Say Noimg_9250

Stop overextending yourself. You do not have to commit to every activity or RSVP to every event. You do not have to agree to help your coworker with every project or volunteer to take on every activity that no one else wanted to be in charge of. Learn to say no. Only say yes when you know you can handle something and you WANT to attend or take part in the activity.

See a professional therapist or counselor

Sometimes stress gets to the point that we are no longer able to handle it on our own. Seek help from a professional therapist or counselor. Having an unbiased professional to talk to and help you sort through your life is invaluable when stress has begun to run your life. Ask for help if you need it.

Perform Positive Affirmations

Retrain your brain to see the world in a more positive light with positive affirmations. Using positive affirmations will create a more positive outlook on life and provide you with a more positive image of yourself. Positive people live longer and happier lives than people who have a negative view of the world.

Check out this list of positive affirmations.

Listen to relaxing sounds and music

If you’re feeling stressed put on some music! But not just any music. Have you ever had a massage and listened to the soothing music that is playing in the background? Listen to those soothing sounds anytime, anywhere when you feel stress start to take over. Nature sounds, meditation music, spa music, relaxing piano music are all great options. You can find playlists and stations for relaxation on just about any listening app. Spotify, Pandora, Youtube, Apple Music, or Amazon Music.

Pet your animal companion

Michelle and Cooper

Author and AS Warrior Michelle with her dog Cooper

Playing with or petting an animal can increase levels of the stress-reducing hormone oxytocin and decrease production of the stress hormone cortisol.

Check out these 8 ways that your pet can help reduce stress.

Do you have more suggestions for preventing, relieving, or reducing stress? Tell us in the comments!

Keep Kickin’ AS, Warriors!

Extra Spoons to You All!

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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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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.

My Positive Outlook

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

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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.

 


I Don’t Even Know Myself Any More

I MISS THE PERSON THAT I USED TO BE!!! Prior to becoming symptomatic in May, I was working full-time managing my father’s company, going to school full-time, and when I wasn’t at work or school I was busy writing books. I mean, I was an intelligent, creative, and charismatic woman. Now? It’s like I’m the Scarecrow, Cowardly Lion, and Tin Man rolled into one.wizard of oz I’ve completely lost my brain. I can’t concentrate, remember things, or even formulate the correct words for things 90% of the time. If someone asks me to do something that is more stressful than laundry I have a breakdown. And, well, Tin Man = my lacking range of motion. I’m not working because of constant pain and my failure to even fill out a deposit slip correctly. (Thank God my father is my boss). I’ve had to drop my college classes because I can’t read more than two or three sentences before my brain checks out. And anytime I try to sit down and write it’s like there is this fog between me and that creative place in my brain. What is this? Am I just in so much pain that it is turning me into a dim-witted moron? Is it a side effect of the medication? Is it a symptom of the disease that the doctor forgot to tell me about? …. Ugh, sorry. Rant over. I just hate feeling like on top of everything else that this disease has stolen from me, that it has now taken my brain and personality along with it too.


I Don’t Always Get Sick, But When I Do I Get Something No One Has Ever Heard Of…

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“ANKLEEOOSING….. ANKEELOSING… Ankylosing Spondylitis. There it is.” On Monday, September 8, 2014, I sat in my car outside of Arthritis & Associates trying to type the diagnosis that Dr. Bushan had just provided me with into Safari on my Iphone. He had spent some time discussing it with me, but to be honest his Indian accent is extremely thick and a little difficult to understand at times. I knew that it was a form of arthritis, that it was an autoimmune disease, and that it was genetic, though no one that I could think of on either side of my family had ever had any kind of autoimmune disease. We have a lot of cancer in the family, but never heard of anyone having an autoimmune disease.

“Ankylosing Spondylitis, or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints that can lead to severe, chronic pain and discomfort. In the most advanced cases, this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. Ankylosing Spondylitis can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved, and rarely, the lungs and heart can be affected. The severity of AS varies greatly from person to person, and not everyone will experience the most serious complications or have spinal fusion. Some will experience only intermittent back pain and discomfort, but others will experience severe pain and stiffness over multiple areas of the body for long periods of time. AS can be very debilitating, and in some cases, lead to disability. Almost all cases of AS are characterized by acute, painful episodes known as “flares” followed by temporary periods of remission where symptoms subside. It is important to know that Ankylosing Spondylitis is a chronic, life long disease and that the severity of AS has nothing to do with age or gender. It can be just as severe in women and children as it is in men.”

“Well, holy hell,” I thought to myself. “Why couldn’t it have just been a Meniscus tear?”

“A Meniscus tear?” You may ask. “What does that have to do with arthritis of the spine?”

Well, let me back track a bit…

In May 2014, I was crouched down, working on our server in the office. As I stood up, my knee felt tweaked a bit, but there was no pop. I assumed that I was just THAT out of shape that I had pulled a muscle or something while standing up. However, the pain was worse the next day. And worse the next day. It leveled out for a while, walking was a little difficult. I looked like I thought I had some gangsta swagga. And then it got really bad. I was no longer capable of bending me knee. Moving from standing to sitting or vice versa became nearly impossible, so I finally went to the doctor in June.

The doctor did some blood-work, asked me questions about how the knee came to be swollen, which it was swollen like a grapefruit at this point, if there was a pop or crack, and they took some x-rays. Well, other than inflammation, all the tests came back normal. They sent me on my way with some mild anti-inflammatory pills. There was no improvement. I’m starting to think that they are obviously missing something in the XRays; I must have torn a meniscus or ACL, or MCL, something!

So then a few weeks later, I go back again, the pain is now so bad that I can’t sleep and I’m crying all the time, I can’t work… And all these doctor visits are being paid out of my pocket because no one in town takes my Obama Care Blue Cross Blue Shield Health Insurance. They run more tests and send me away with different pills.

Well, now I can’t walk without help so I start using a cane, but then my wrist and thumb start hurting on my right side, same side as my knee, same side that I am holding the cane, so I assume that the pain is from using the cane. I get rid of the cane, but the pain in my wrist and thumb does not go away. The doctor runs some more tests and suggests I get an MRI. He suggests the knee pain could simply be Jumper’s Knee, Tendonitis. So I start getting Advanced Muscle Integration Treatments from a chiropractor, and I get the MRI.

And then the pain spreads to the right side of my jaw joint. Okay, I know that there is nothing that I have done to cause my jaw to start hurting. I return to the doctor and I’m now using crutches. And, despite the chiropractor trying to convince me that the treatments are working, it’s pretty obvious to me that I am not getting better. The MRI shows nothing unusual.

They finally refer me to a Rheumatologist, who of course does not take my insurance, so my first visit is another $850. Dr Bushan does a very thorough exam asking me questions about my past health, past pain, family history, taps, pokes, and prods, a variety of areas on my body and let’s not forget the mandatory x-rays and blood work. Dr. Bushan says that with my history and the blood-work that was sent over from the other doctors it seems pretty obvious to him that I have some type of arthritis going on for sure, especially since my inflammation sedimentation reading was a 100. The trick is simply going to be identifying what kind of arthritis, since my symptoms do not follow a normal course. He says he feels comfortable ruling out Rheumatoid since the pain is not paired joints. He gives me Prednisone, and for the first time in months (it is the end of August by this point) I am regaining some normalcy in moving around while taking the steroids.

Fast forward to the where our story started. September 8, 2014. Dr. Bushan tells me that I have a genetic indicator for Ankylosing Spondylitis, and that with my long history of back pain that goes all the way back to the late 90s when I was in junior high, with the random pains that I would complain about for the last five years (only to receive eye rolls), with the Tietze Syndrome I was diagnosed with in 2013, with the weird tingling sensations in my feet, and my constant fatigue, and unwell feeling (which I was often accused of all being in my head or faking), all adds up to and can be explained by the diagnosis of Ankylosing Spondylitis.

I guess the shock was in the fact that there really was, indeed, something wrong with me. Maybe it was because all my problems had always been brushed off as nothing but me being dramatic, a baby, too sensitive, or a faker got to my head to the point that I believed I was not, could not really be sick. And of course I never went to he doctor for any of those other symptoms, because they “were not real,” with the exception of the Tietze Syndrome. I went to the doctor in that instance because I thought I was having a heart attack.

This whole experience has left me wondering what it says about me, or maybe about society, that in these cases I had to get to the point that I thought I was having a heart attack, and then to the point that I literally could not walk, before my illness was taken seriously enough by myself as well as by the people around me to be addressed. And why it took so long, so many doctor’s visits, before they decided that they were not doing me any good and should send me to see someone else. And I know that even though many of my symptoms have been going on for years, I still received a diagnosis a lot quicker than many people do. So many suffer in silence or suffer without any relief for years and years. Stand up for yourself! Only you know what you are feeling. You know your body better than anyone else.

Gentle Healing Hugs to All of My Spoonies.

I’ll be Praying for a Cure~

XoXo

michellehillstrom