a couple wearing festive woolen socks relaxes in front of the fireplace and their christmas stockings

The Decisions I Have to Make on Christmas Day With Chronic Pain

It’s Christmas Day! For most people this stirs excitement for the upcoming events of the day. Family time, the scents of the tree, carefully chosen gifts, fresh baked treats and our favorite dishes for the big meal of the day.

For me, I think first about how dressed up I will get. Will I spend the extra effort to curl my hair and dress up my make-up? Fancy festive clothes or comfortable clothes? Do I push the envelope and try to wear some heels even though I know I shouldn’t? They would look better than flats with my cute outfit though. (My first anxiety episode usually kicks in right about now.) I give up and go with the more comfortable clothes because if I’m going to be in pain most of the day, why add to it by wearing uncomfortable clothes.

Running late, due to all the “rest breaks” I had to take while getting ready, we hurry to load the car with all the gifts and food and drive 30 minutes or more, depending on traffic, to our first destination. Do I take a pain pill now or do I wait until later in the day? If I wait till later, I can at least enjoy part of the day without being in a hazy fog. Although, if I wait too long, then my pain will rule the day and I won’t enjoy anything. I try, I really do, to enjoy the festivities. All the while, I’m trying to hide how bad I’m hurting or going outside in the cold air to try and soothe another anxiety attack without anyone noticing or commenting.

Now, how many houses do we visit? Do we focus on one side of the family today and try (knowing someone will get their feelings hurt) to move the other half of the family to Christmas Eve or the day after Christmas? Or do I push myself to go to both places in one day? Fight through the pain and anxiety attacks, knowing I will get no sleep that night? How long do we stay? Can we move things along without looking like that’s what we are trying to do? Not because I don’t want to spend time with everyone but because the less time I’m there the sooner I will be in the comfort of my own home. Then I can start dealing with the physical/mental aftermath of the day’s events. Tomorrow will be filled with pain meds, guilt, more depression and laying around while the acute pain runs its course.

Meanwhile, the frustration of my family shows on their faces or in their comments. The questions of “Why don’t you just have surgery?” or “Have you tried doing _____?”(cue filling in the blank with just about any suggestion you can imagine). Or, my favorite, “Hope you feel better soon.” I grit my teeth every time I hear that one! Even though I have explained to them numerous times that I won’t ever get better. I will always have pain. The degree of pain may be “better” on some days, but I will never see “before back pain” comfort levels ever again. I get their frustrations – believe me, I do! Yet no one is more frustrated about it all as much as I am. Dealing with chronic pain every day is more than frustrating; it’s debilitating. Physically and mentally.

All of that being said, last year my husband and I spent Christmas Day at our house, just the two of us. We split our time up between each side of the family. Doing the day before with one side and the day after with the other side. We asked them to please understand. Even though I am close with my family, I must say it was one of my favorite Christmas Days ever! We took our time waking up, had a nice breakfast, turned the fireplace on and relaxed all day. We enjoyed each other with no stress. We reflected on our past year and looked forward to the years to come with hope. Christmas music on in the background, we fixed an easy Christmas dinner for two. Then we opened our gifts and drank some wine in the dark with nothing but the Christmas tree and the fireplace adding a soft glow. It was wonderful and romantic.

Can we with get away with making this our Christmas tradition from now on without upsetting the family? I don’t know. Understandably, I can already picture the looks of disappointment and the sad tones in their voices. It is wonderful to be loved so much! Besides the fact that it kept me from pushing myself past my “comfortable point,” it was a more meaningful Christmas Day for my me and my husband. I finally enjoyed Christmas for the first time in forever because there was no stress, no toes being stepped on and no big mess to clean up! This also made the days leading up to Christmas more enjoyable because I knew exactly what the events of the day would be. For the first time in years I looked forward to Christmas Day with excitement instead a cloud of dread and depression.

I guess those of us struggling with limitations should try to make Christmas the best it can be for ourselves. We can try to include the old traditions, but we won’t always be able to make everyone happy and we need to be aware of our limits. So, while I stress over what I am going to wear on Christmas Day and where we will spend it this year, I wish you all a holiday season filled with comfort, peace and happiness!

We want to hear your story. Become a Mighty contributor here.

Image via Thinkstock.


hospital nurse talks to patient in hospital bed

When a Nurse’s Compliment During My Procedure Changed My Life

As I sit and write this, my back pain in flaring up. Just sitting in a computer chair makes it feel like my back is on fire. Let me explain about my back: I have two pinched nerves in my neck, mild degenerative disc disease in my thoracic spine and a bulging and herniated disc in my lumbar spine. So when I say my back hurts, I mean my entire back.

After years of putting up with this pain, I finally found an amazing pain management doctor who suggested getting an epidural for my lower back pain. An anesthesiologist sedates you for the procedure so you have to get a ride home from the hospital. I’m not sure why, but I hate asking people for rides. Because I live with chronic pain, I fight to stay as independent as possible. Asking for rides reminds me there are times when I absolutely have to depend on other people to help me.

After my first epidural I decided to do some research to see if there was a way to avoid the sedation. During my research, I discovered sedation could be optional for my next procedure. I was so excited when I read that. As a person who doesn’t like to ask for rides or get sedated I thought maybe I could avoid both. When it came time for my next epidural, I asked my doctor if I could try the procedure without sedation and he agreed. I was familiar with the procedure because I had it done before, but I was concerned about the amount of pain I would be in. Along with the epidural I was also receiving trigger point injections for my neck.

On procedure day, I was still a little nervous about the pain. They had me lie on my stomach, and they put an oxygen mask in my nose. Between the staff’s calm voices, the oxygen and knowing some pain relief would be coming soon, I really started to relax.

Once they confirmed with me I wasn’t getting sedation, the procedure started. There was no turning back now. As the epidural needle went into my lower back, I felt the medicine being pushed in – a weird sensation I would describe as liquid being forced into your body. But there was no pain. At all. Just the prick of the needle. I got really quiet and the nurses kept asking me if I was OK. Between the oxygen and the sensation of the needles, I was actually calm. They took my blood pressure during the procedure and it was lower than when I got there. That is how relaxed I was. The nurses started telling me I was so brave. Someone also said there are grown men who skip sedation and are screaming in pain during the epidural. I loved hearing all this encouragement. Once the epidural was over, my doctor moved onto trigger point injections. Even after multiple needle sticks, it was a very peaceful experience.

The entire staff in the procedure room was kind and supportive. Then came the words I will never forget. One of the nurses, Julie, said to me, “You’re an Amazon woman.” It was in reference to the fact that I didn’t get sedation and made it through the procedure without complaining. Having had chronic pain for almost seven years makes me feel weak. On my worst days, just getting out of bed seems like a monumental task. It is also frustrating when my mind says, “Go” but my body says “Oh, heck no.” Having Julie say those words to me was so empowering.

Now when I think I can’t do something or am struggling with even a simple task, I say to myself, “You are an Amazon woman,” and it gives me the drive to push myself. Julie changed my life that day. To have a total stranger see I am strong despite my unrelenting pain made me want to be an example to others – to tell them “Yes, the pain does suck, but you are so capable of being strong.”  I try to encourage others the same way Julie encouraged me.

And let me just take a minute to mention how awesome my pain management doctor is. It took me years to find such a kind and caring doctor who believed I was in pain. I know many people who had to search for years like I did to find the right doctor. If you are still searching for that great doctor, don’t give up!

I have the same procedure done every three months to help with my back pain. I actually look forward to going because I know pain relief is coming. But I also get to see Julie and the amazing staff in the procedure room who tell me how strong I am – a reminder that I am an Amazon woman!

Image via Thinkstock Images

When I Realized Labels Can Enable My Children With Special Needs

Many parents are scared of “labels.” So scared, they don’t pursue a diagnosis for their child because of the fear their child will forever be defined by their diagnosis.

I understand this fear. I once shared it too.

There is a reason we did not initially share our daughter’s Asperger’s diagnosis with her, or with too many people around us. We were scared she would be defined by her diagnosis – forever limited by her label. In fact, I once wrote the following:

I am trying to remain positive and focus on what we can do next to help her, but I am worried about “the label.” With our son, the label that came with the autism diagnosis was welcome; it helped us obtain funding and assistance for him that he needed. He clearly has special needs and I have never hidden them from his teachers, friends or family.

My daughter is different. She doesn’t appear to have any special needs, and while a label might help the school obtain extra aide time, a label can also imply certain expectations of function and behavior. I don’t want her to be judged by the fact she has Asperger’s – I want her to be judged on what she can do as an intelligent, funny, affectionate, unique little girl.

She may be known by a different label today, but to me she is still my little girl from yesterday – and I will always love her, just as she is.

I wrote these words nearly exactly 5 years ago. I’m not sure when my thinking changed. But it did. Slowly and irrevocably.

I think a lot of the change came when I fully accepted the diagnosis myself. For a long time I unconsciously thought the diagnosis, and the label that came with it, was indicative that something was wrong with my child. I never said this aloud, and I never even consciously gave it a lot of thought at the time, but looking back, I can see that was my headspace in the early days.

Now I see the spectrum as a wonderful place of clever thinking, innovative ideas, boundless creativity and unique perspectives. There is nothing wrong in any of that. It is just a different way of thinking and viewing the world.

Yes, there are challenges with an autism diagnosis – I live with them every day. However, now I’ve come to accept my children for who they are, the challenges are less daunting. I realize the challenges are tied innately to the way they interact in the world around them, and I can usually do something to help them.

I’ve since come to realize that a diagnosis, and the label that comes with it, should not be viewed in a negative way at all. Instead of defining someone and their abilities, I believe a label actually enables and empowers.

A label provides access to help, support and assistance. Without a diagnosis, people cannot receive funding to help meet the costs of care. They cannot apply for assistance at school. They cannot receive benefits they are rightfully entitled to. A label allows them to access the help and support they need.

A label is the key to understanding and acceptance. A diagnosis and a label can provide answers and promise help. As I’ve described above, the label, even though I feared it, allowed me to fully accept my children’s conditions and understand them better. We have a far better relationship now there is a label to explain their needs and requirements.

A label is a sign of action, representing the first step in moving forward. Seeking a diagnosis and a label is a proactive step, recognizing there are unique difficulties and making a move to address them. Once the diagnosis and label are accepted, it is far easier to move on emotionally and make real progress – believe me.

A label allows people to find their tribe and their community. A diagnosis helps families congregate – to find others in a similar situation. There are support groups, in real life as well as online, which can only be accessed with a diagnosis. A label provides entry to these groups and also represents a common link, bond and connection.

A label can help people take ownership of their condition. Many people come to accept their diagnosis and feel a sense of pride in their label. My kids are proud to be on the spectrum. They relish “being different.” For them, it’s a source of pride and it’s helped develop their self-esteem and self-respect. They know they are different and they are OK with that.

In the end, a label is just a word. A way to categorize similar things. Yes, words are powerful. They can cut, wound and stab just as deep as any weapon. However, words can also be owned. They can be claimed. They can be reformed and remade.

We all have the power to reclaim the meaning of the word “label.” We can change the negative connotations associated with it. We can recognize it for what it is – an enabler.

We can all do our part to change the way labels are seen in the future. We owe it to our kids, our families and our communities to tackle the word head on and not let it stare us down.

We shouldn’t live in fear or avoid a diagnosis and the label that may come with it. We should be doing everything we can to identify our kids’ needs and doing everything possible to address them. Because how can we help them if we don’t know how?

That’s why I truly believe labels don’t define. They enable.

Tiffany after and before her weight loss.

Finding Self-Confidence Through Physical Fitness as a Person With Cerebral Palsy

Hi, my name is Tiffany Eickhoff. I’m 28 years old and from Saint Louis, Missouri. I was born with cerebral palsy.

Two years ago, I made a drastic change in my life. At that point, I was just graduating college and was at a very unhealthy weight. I got to the point where I couldn’t walk or stand for long periods of time without my body hurting. With my whole life ahead of me, I faced the fact that I needed to improve my health and give myself a chance to live the best life I possibly could.

A few weeks after I graduated, my health journey began. I started working out a few days a week in a group fitness class with trainers and a few days a week on my own. I also took a huge leap by completely changing my nutrition. I gave up soda and now lead a paleo lifestyle. My diet consists of lots of veggies, protein (mostly meat), seafood and fruits. I cut bread and fried foods from my diet and eat very little dairy. Every once in a while I treat myself, but I feel so much better now. It’s all about striking a healthy balance.

Tiffany Eickhoff.
Tiffany in a 5K.

While these changes to my lifestyle took time and perseverance, my quality of life is much better as a result. Over the past 21 and a half months so far, I have lost 70 pounds. I am down to only having to walk with one cane and rarely ever use my wheelchair any more. I even raced in my first ever 5K on November 14th of last year, and completed my third 5K on April 2nd! The positive impacts have also been reflected in my mind and spirit, giving my overall self-esteem and confidence the boost it needed. Now, I’ve gotten into fashion and enjoy putting outfits together and taking more pride in my appearance. I also gained the courage to start learning how to drive again and got my driver’s permit.

Being healthy is a lifestyle for me now. I realize it’s a process, and take it one day at a time. I keep getting stronger every day and continue to reach for higher goals that allow me to live life with greater independence. Next up, I want to complete a half marathon, marathon, and triathlon. I am currently learning how to drive with hand controls, and hope to get my driver’s license soon. Eventually, my goal is to live completely on my own and totally support myself. Life is about the journey. I am confident, driven and determined that the sky is the limit for me!

Editor’s note: This post is based on an individual’s experience and should not be taken as medical advice. Please see a medical professional before starting any diet or exercise program.

This story originally appeared on Miss Amazing’s Musings.

gymnast on a balance beam

To Girls With Physical Limitations That Make Sports Like Gymnastics Risky

As the Olympics begin this week in Rio de Janeiro, I thought about how I’ve always wanted to be a gymnast. I remember watching Dominique Moceanu, an Olympic gold medalist, execute a flawless floor routine, and I wanted nothing more than to do the same.

I shared this envy with other little girls. I would watch other girls on the playground practice and try to imitate them. Back then, I was fearless. I asked my new friends to teach me things, and I would attempt them without any hesitation or consideration of any potential negative consequences. I was determined to learn how to do it and to be like my new friends.

My friends were shocked when they saw how flexible I was. Because of my hypermobility due to Ehlers-Dandles syndrome, I was able to do things that normally required gradual training. This was the first time someone told me I “could be a gymnast.” In fact, I hear this remark all the time. I “look” like I could be a gymnast because I fit the “profile” due to my small stature, degree of flexibility and toned arms and legs.

However, my flexibility is actually a problem. I’m at risk of injury because my joints dislocate. This isn’t to say that I gave up or simply didn’t try. The reality is that my physical limitations prevent me from being a gymnast. My dislocations, periodic paralysis episodes, exercise intolerance and postural orthostatic tachycardia syndrome (POTS) ultimately made this dream impossible and incredibly unsafe.

None of these obstacles can be overcome with practice or conditioning. I realized this when I was determined to do a handstand. I did all the right things, I did proper stretches and practiced for weeks. But I only lasted about three seconds without falling over after I realized how unstable my joints were.  

As I got older, I developed exercise intolerance and frequent fainting episodes, which would further hinder my ability to withstand activities that involved exertion or being on my feet for extended periods. I also developed a loss of muscle function that causes a burning sensation in my muscles and feels like my arms and legs have concrete weights attached them.

Unfortunately, all of these factors would be difficult to ignore on a balance beam, where my life would depend on my physical strength to execute a perfect landing. I learned the last thing I can count on is my body. So there would be little trust — while suspended in mid-air — that I would I land on my feet.

To other young girls who are dealing with physical limitations that make sports like gymnastics a risky idea, please don’t ever feel like you’re missing out. You shouldn’t have to feel like you won’t fit in because you’re unable to participate. So much changes from elementary school to high school. It’s likely your friends will probably lose interest in gymnastics like my friends did and will move on to other things.

Unfortunately, I just wasn’t cut out to be a gymnast, and, not surprisingly, neither were any of my friends. I’ve grown to accept that almost everything is a spectator sport for me due to my limitations. Despite this, I truly feel like I’ve never missed out.

Sitting on the sidelines has allowed me to appreciate other people’s talents and motivates me to hone my own skills. It’s important to find other hobbies or interests that make you happy. Trust me, your passion will lead you to making good friends.

Not being able to follow this particular dream has never been a detriment in my life as an adult. I have so many other dreams to follow that are attainable and the pursuit of them has made my life satisfying. As a result, I’ve made my mark on the world with my talent in writing, art and design. It’s perfectly OK to be different and to be good at other things. Just be you.

Remember, athletes aren’t the only heroes or inspirational figures in this world. You’re just as inspiring and courageous.

Lead photo source: Thinkstock Images

Photo of happy little girl walking

Mom Becomes Special Needs Photographer After Her Daughter Is Born With Down Syndrome

Three years ago, Stephanie Mullowney had zero photography experience. It wasn’t until her daughter Hannah Grace was born that her passion for photography blossomed.

Within moments of being born Hannah Grace, now 2 years old, was diagnosed with Down syndrome and several holes in her heart. Mullowney knew from sonograms there was a chance her daughter would be born with the condition, so her and her husband moved from their home in Maui, Hawaii, to be closer to Mullowney’s family, and a better equipped hospital, in Tennessee.

Five days after Hannah Grace’s birth, Mullowney’s husband left, leaving Mullowney to raise her daughter on her own. Months of hardship followed, but the one thing that got Mullowney through was taking photos of her daughter.

Hannah Grace and Stephanie Mullowney
Mullowney and Hannah Grace

“I would take picture after picture of her with just my iPhone and a nice camera I got as a gift at my baby shower,” Mullowney told The Mighty. “I took literally hundreds to show the world how beautiful she really was.”

When Hannah Grace was 8 months old, Mullowney finally found a job. Her boss, a professional videographer saw Mullowney’s photos and urged her to buy a professional camera. “The more he encouraged me the more I believed I could do it,” Mullowney said. “So I bought a camera. [It] took me 20 minutes to get the strap attached to it.”

Professional looking photo of Hannah Grace

Now, a little over a year later, Mullowney is a professional – starting her own company, Paper Dolls Photography, in March. Since then, she’s done interviews with local news, radio, and several publications.

Young boy wearing patriotic sunglasses

Through her photos, Mullowney hopes to remove the labels society has placed on individuals with special needs. “Photography to me is like having a voice with no words, and a lot of times my subjects are nonverbal so it’s my job to be able tell their story for them and their families.”

Three adults with special needs

Mullowney focuses on photographing people with special needs and their families. She also takes photographs for The Down Syndrome Association of Middle Tenn. and the Best Buddies Organization, in addition to her private clients.

Photo of young girl smiling

Her advice to parents looking to capture their children with special needs on film? “Capture every moment without missing a single one because every little thing they do is a huge deal,” Mullowney told The Mighty. “You’ll find that taking that perfect shot will come with ease because every single one of them will in fact be perfect and cherished whether is taken with an iPhone or a fancy high end camera.”

Photo of happy little girl walking

For more of Mullowney’s photography, visit the Paper Dolls website and Facebook page.

Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!

Available for purchase on Amazon and iTunes.

Real People. Real Stories.

150 Million

We face disability, disease and mental illness together.