My (last minute) Zebra Holiday Gift Guide

I come from a BIG family. One where love crosses the boundaries of religion. As a result, I celebrate both Christmas and Chanukah. When you consider that my birthday is the 24th, December is basically just one big party for us! (A party that’s a little more squeezed this year because Chanukah is coming a little later than usual!)

When people started asking what I might like this year, I realized that my answers were different. They were mostly things that I thought could make my life easier. So, if you are wondering what to get the zebra (or otherwise medically interesting person) in your life, or wondering what to ask for – here are a few of my ideas:

1. Comfy Clothes 

People with EDS need clothes that are comfortable (both for going out and for the days when leaving the couch isn’t an option). My current favorite for both lounging and outings are LuLaRoe leggings! They come in just about every pattern (and solid color) you could ever wish for and are ridiculously soft! I am not a consultant, but I have a friend who is if you are new to LuLa and need one: LuLaRoe With Morgan Aldridge. Another idea is to buy fleece lined leggings to help keep your zebra warm!

2. A Heated Blanket

This one from Target.com is affordable AND has a zebra print! Be warm & spread awareness!

This time of year I have a really hard time keeping warm because of my autonomic dysfunction. Additionally warming up quickly when coming from outside helps people with joint conditions (like EDS & arthritis) to avoid additional pain brought on by the cold.

3. Compression Gloves

Imak Arthitis Gloves

During the most wonderful time of the year, compression gloves serve many purposes for zebras – they encourage proper circulation (an issue for some of us who also have Raynaud’s), help keep our joints in line, increase proprioception, and provide an extra layer of warmth!

4. A Posture Shirt 

Women’s Pullover Shirt from AlignMed

Poor posture can be a source of pain in EDSers (including me). Our brains do a bad job of telling our body where it is in space (proprioception), so we sometimes slump a little bit. Something like a posture shirt can provide the sensory input our brains need to remember to sit up straight. Posture shirts are especially good for the type of long road trips that tend to accompany the holidays as well! Or if you want to pretend to be a princess.

5. Subscriptions to Services

People with chronic illness/pain often have flares or difficult periods where it is hard for them to  carry out day to day tasks. In these times, subscriptions for things like a cleaning service, snow removal/lawn service, or Uber can help make days that feel insurmountable easier for your loved one! Even on the good days, these things allow us to conserve our energy for the stuff that really matters. Bonus points if you find gift cards for a service like medical massage or acupuncture at a place that you know the person already uses.

6. Kinesio Tape 

You know that colorful tape you see all over athletes these days?! We use it too! Kinesio tape can help to stabilize joints, reduce joint pain, improve posture, and protect muscles surrounding vulnerable joints from strain. It’s especially helpful for EDSers because our pain tends to move – and while we may not have a brace for our latest pain there are tons of YouTube videos providing instructions on how to properly tape just about any joint.

7. Subscriptions to Media 

On the worst days, media subscriptions like HULU, Netflix, Amazon Prime, and Audible can be the thing that helps us forget our pain for a little while and make it through the day – episode by episode or chapter by chapter. It’s hard to put into words how important these types of subscriptions are for me on the bad days.

8. Migraine Glasses 

Me wearing my Axon Optics Hannik migraine glasses

Many zebras have photophobia that is related to migraine, Chiari Malformation, or other neurological conditions that can coexist with EDS. I  can not say enough how much these have helped me! It’s about to get snowy in the midwest and the sun shining off of the snow is a beautiful sight that I will be able to enjoy this year, instead of wincing from photophobia. There are other companies that make FL41 tinted glasses as well!

9. Compression Leggings

 

Compression Leggings from RejuvaHealth

Compression gear, which is vital for many people with dysautonomia (which is frequently seen in EDS) is not often fashionable – but compression leggings pull double duty! They are cute and functional.

10. A Fitness Tracker With a Heart Rate Monitor

I like my Fitbit Charge 2, but there are definitely other options on the market. This helps me to know when I need to slow down because I don’t always feel tachycardia (fast heart rate) coming on.

 

I hope that this list provides some ideas for the zebra in your life. Feel free to share any ideas you think of that I missed in the comments! All of that said, some of the most important things that you can give a zebra can’t be wrapped. Your love, and understanding are more than enough! I wish you all a holiday season filled with love and laughter.

**This is not a sponsored post – just trying to help out zebras and their families!

 

 

 

 

 

Managing My Digestive Health with Visbiome (A High Potency Probiotic)

 

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. 

I have shared previously that my digestive struggles (including diagnoses of: Gastroesophogeal Reflux Disease (GERD), Irritable Bowel Syndrome (IBS), and Functional Dyspepsia) are linked to my diagnosis of EDS. That is true, but there is also a second, more complicated piece of my digestive difficulties that I learned about when I started seeing a doctor of integrative/functional medicine in 2015. Integrative/Functional medicine is a practice in which doctors work as a team with a patient towards overall wellness. These doctors view patients as a whole, and not in the piece by piece manner that the specialties of modern western medicine encourage. They work with both a background knowledge of western medicine, as well as an understanding of the benefits and wisdom that traditional eastern medicine offers. (You can learn more about it here)

When I first started seeing my doctor of functional medicine, I had not yet been diagnosed with EDS, and I wanted someone to look at the whole picture. One of the first things that she did was to look a the health of my digestive system, or “gut” as she likes to call it. What she found was that years of upper respiratory infections fought by a body that was already in a state of “fight or flight” from the yet to be diagnosed Dysautonomia were met with antibiotics that not only did away with the infection, but also had effectively killed my entire microbiome of “good bacteria” and left it unbalanced. Bad bacteria, and candida (yeast) were overgrowing. One of the first things that she did was put me on the best high potency probiotic available at the time: VSL#3. It was not a miracle cure, but it helped my digestive tract to function more normally.

When I was offered the chance to try Visbiome, which is a new high potency probiotic created by the scientist who orginally designed VSL#3, Professor Claudio De Simone, i jumped on it. Visbiome contains the same strains of bacteria, in same proportions as VSL#3, which amount to 112.5 billion bacteria per capsule (about 3-5 times the amount of live bacteria found in drugstore probiotics). Both VSL#3 and Visbiome capsules must be refrigerated (and arrive in a cooled state), but the Visbiome bottle is designed to further ensure the preservation of the bacteria until you use it. It’s also easy to open if you have arthritis or another joint condition (like me). Another advantage for me is that the Visbiome product is dairy free (something I avoid as a part of the dietary management of my conditions) and contains fewer preservatives than VSL#3. Both products are gluten-free. The price (if I choose to continue with the Visbiome) is roughly the same as for VSL#3. There was no reason not to try it (You can learn more about how the two products compare on Visbiome’s website).

The recommended dosage is the same that my doctor had recommended for the VSL#3, 2 capsules. I took mine together, at dinner time, (because that is when I am most likely to remember to look in the refrigerator to take it) and because for part of the course of treatment I was on antibiotics for one of those upper respiratory infections that I am prone to and needed to take the probiotic at a different time of day from the antibiotic.

After completing the 30 day trial, I can say the same for Visbiome original strength as I did about the VSL#3. It is no miracle cure. It was probably hampered by the antibiotic, but i got bronchitis and had to treat it (Visbiome did prevent antibiotic-associated diarrhea, which I’m also prone to). I still have digestive difficulties, but the addition of a high potency probiotic has made an improvement in my nausea, reflux, and constipation. Visbiome maintained that effect. This outcome makes me eager to work with my doctor of functional medicine to consider stepping it up and trying Visbiome’s other product, an extra strength variety that has to be prescribed by a physician.

I would recommend that if you choose to look into the original or extra strength version of Visbiome, you should do it under the direction of your physician. I am not a doctor, and therefore have no way of knowing if this product is right for you, I can only say with certainty that it is right for me.

If you are interested in finding a doctor of functional medicine to work with (who may be more likely to consider the use of a product like Visbiome) I would start with the database from The Institute of Functional Medicine.

 

Gratitude

Today is my favorite holiday, which takes place in my favorite season! It is a time to reflect on all that we have, and all that we hope for. I have so much to give thanks for this year. I am grateful for this space, where I am able to share my experience openly and honestly. I am grateful for a diagnosis (or really diagnoses), and the direction it provides. I am thankful for the health care professionals on my team who are committed to working with me to achieve more good days.  I am grateful to be able to afford so many (if not all) of the specialized foods and treatments recommended. Most of all though, I am grateful for the people in my life who “get it” and the perfect moments in time where I feel loved and accepted and don’t feel the pressure to hide or even explain myself.
These moments are precious when they occur with family or friends (and I am so thankful to say that they do!), but they leave me speechless when they happen with strangers. 

I had a moment like this recently that I want to share. First, because
practicing gratitude, especially when things aren’t easy, is a powerful way to refocus yourself on all of the good in the world. The other reason I feel compelled to share this story is because there are so many stories out there that began the same way and ended differently, with judgement and unkindness. This is a story of open-mindedness and kindness, and we all need more of that. 

In the three months that I have had a permit for disabled parking, I have not had one negative experience. I was so afraid when I applied for it that I would meet the resistance that is so frequently shared on the internet. It’s likely that someday I will meet someone who is uneducated or unkind, and when the time comes I will be ready to educate them about invisible disabilities and ableism with a smile (hopefully). Until then, I would really like to share the type of story that I think just must not get shared. The story that I want to give thanks for:  

Lately, I’ve been struggling with an upper respiratory infection that won’t lift, on top of the effect of the ever-changing weather on my intractable migraine, and some difficulty with my SI joint/hips. When I pulled up to Whole Foods to do some shopping last week, my right side was numb, and I knew I would need the extra help of my handicap placard to make sure I had the energy to get through the store. I was right, and by the time I had gone through check out I was relying on my cart to help keep me upright. I walked my cart full of goodies out to my car, but had difficulty keeping it from rolling away as I opened my trunk. At that moment, I knew I should have asked the staff inside the store for help. 

A split second later two middle-aged women on their way into the store approached me. I panicked internally, expecting to have to explain why a perfectly “healthy looking” young woman needed that coveted parking space. I started to tear up. I WAS WRONG. These women were not interested in judging me. They did not ask a single question about the nature of my disability. They saw me struggling, and they came to help. They helped me to pack my bags into my car, and then cheerfully offered to take my cart as their own. They were exactly what I needed in that moment. I will never forget their kindness. It is one of the many things that I am thankful for on this Thanksgiving.

This simple story illustrates my wish for you this holiday season: may you enjoy moments in which you feel at ease, knowing that the people around you understand (whatever it is you struggle with) and still value you. May you feel connected. May you take time to practice gratitude for each of these moments, as fleeting as they may be. Take time to say thank you to the universe. 

On Becoming Disabled

My name is Sara, and I have a disability. I recently said this (or something like it) out loud for the first time. It’s an odd shift in identity, to go from studying disability in an academic sense and understanding how to advocate for people with disabilities as a professional – to becoming disabled.

I was already working through this identity shift when I came upon this article in the New York Times by the same name: Becoming Disabled (If you haven’t read it, please take a minute to do so – it is so worth the time, I promise). Unlike the author of this brilliant piece, I was well aware of the presence of disability culture, and the subtleties of how a group of people with a variety of differences come together to form one entity (although sometimes disagreeing among themselves): I just floated somewhere in the realm between able-bodied and disabled for many years. In other words, I wasn’t sure if my particular brand of adversity “counted” as a disability.

Recently, some things happened that made it pretty clear that I am now quite more disabled than able-bodied (although my level of disability can vary from day to day). Last spring, I resigned from my job and left my career as a school psychologist – I was no longer able to keep up physically or mentally. Then, this summer, it became evident that I needed a disabled parking placard. My doctor more than agreed. Most recently, my physical therapist gave me the “homework” of purchasing a shower chair in hopes of curbing my nasty habit of falling while I bathe. Submitting to all of this was and is difficult. Working less, parking up close and having a place to sit in the shower all sound lovely when they are a choice, but when they become a necessity it’s not as a great as it sounds, it’s just what you need to even things up so that you can get through your day.

Becoming disabled in today’s day and age is further complicated by the presence of ableism, whether intentional or not. As a professional in the field, I know how far we have come with making the world a more welcoming place for people with disabilities in the last 50 years. As a person with a disability, I also know that ableism is real, and we still have a long way to go.

We live in a world where the murder of nearly 20 disabled people in their sleep goes more or less untalked about. Where paralympians are “celebrated” with pictures of able-bodied people digitally altered to look disabled. Where a candidate for President of The United States of America openly mocks a reporter with a disability and still polls neck and neck with the candidate who is an ally for people with disabilities. A world in which that candidate becomes the President Elect. A world in which people with disabilities are often left out of the conversation about standing with minority groups in this country during Trump’s unfortunate ascent to power.

My name is Sara, and I have a disability. I am scared, because disability makes me vulnerable, and because I live in a culture that is not always accepting of the fact that disability does not discriminate on the basis of age or any other qualifier. It does not always look the way you think it will. ANYONE can become disabled at ANY time during their life. That is why it is important not only for me, but also for you to create a world in which people with disabilities can be understood and accepted. You might find one day that you need it too.

This excerpt from Becoming Disabled highlights the public perception of disability and implies how different it is from reality:

A person without a disability may recognize someone using a wheelchair, a guide dog or a prosthetic limb, or someone with Down syndrome, but most don’t conceptualize these people as having a shared social identity and a political status. “They” merely seem to be people to whom something unfortunate has happened, for whom something has gone terribly wrong. The one thing most people do know about being disabled is that they don’t want to be that.

My name is Sara, and I have a disability. I also have a voice. I am not just someone that something bad happened to. I am a whole person, I am as complex as you are. Yes, I have unique needs, and require a little more help than most to create an environment in which I can thrive – but I’m working on it. There are people all around you like me. The ones who work all day, every day behind the scenes just to get by. I am afraid for our future in this country, during this time of uncertainty. I am afraid that in Trump’s America I (and others like me) will not be valued. Still, I refuse to not share that this is a part of my identity. I am disabled, and I guarantee that there are people all around you, people that you love, that are too. Stand by us, please.

Adding Axon Optics to My Migraine Toolkit

Fall is my favorite season, but it is also one that is difficult for me because of my intractable (never relenting) migraine. In the Midwest, the beauty of the changing leaves is inevitably  paired with swings in temperature and barometric pressure as the seasons change. This fall has been a little easier thanks to my Axon Optics Migraine Glasses. 

Because this is a sponsored post (my first!) I need to say that I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. 

When offered the opportunity to review this product, I felt the usual mix of skeptical and hopeful – a mix that allows me to continue to try new things for my migraine, but also protect my heart if they prove unhelpful. I liked that the website does not promise a cure (Run far far away from any person or product that claims they can cure your migraine – there is no cure for migraine). They do advertise a reduction in the number and severity of attacks, which is a realistic goal for the treatment of migraine. And so, I agreed to give it a try. 

I chose the outdoor HANNIK model, because they provide wrap around coverage, and because controlling my light exposure is easier when I am inside. I have terrible light sensitivity around the clock because my migraine is persistent. I was excited when they arrived in September with a foam case. Initially, I liked their sleek style, but wasn’t sure how much they would help. 

One month later, I never leave home without them. While my intractable migraine has not gone away, having my Axon Optics has meant that I have been able to better control the pain caused by light sensitivity. Because of my Axon Optics, I have actually been able to ENJOY outdoor activities this fall (instead of just pushing through them)! My husband (J) and I spent a lovely afternoon at a local pumpkin patch. I’ve spent more time outside with my dog, The Monster, playing. Even driving is easier and less painful!

I am so glad that I decided to take a leap of faith and try this product. My only regret is that I don’t yet own a pair for indoors. Despite the cost, if you struggle with light sensitivity from migraine or another illness, I can recommend that you take a leap of faith and try them out too. I can say this confidently because I have seen for myself how much of a difference they can make, and because I plan to purchase that second indoor pair. 

My Axon Optics FL-41 tinted glasses are now an integral part of my migraine toolkit. Could they be a part of yours too? 

How to Be an Ally to Someone with an Invisible Illness

It’s #InvisibleIllnessAwarenessWeek. I could try to share with you what it’s like to live with an illness or disability that is not immediately apparent, but others have done this really well already, and let’s be real – I’m not that succinct. Instead, I’m choosing to focus on helping people who have not experienced invisible illness or disability to understand and become allies for people with invisible conditions (we need you, healthy people!). Whether or not you realize it, someone you know is most likely living with one of these conditions. You can help by committing to becoming an ally for them. Here’s how:

1. Keep an Open Mind

Only the person who is close to you and living with an invisible illness can tell you what it is like for them. What they describe may not match what you have heard in the past about their specific condition. Illnesses manifest themselves in a variety of ways, many of which don’t match the textbook description. Try to keep an open mind and believe what your friend confides in you about how their illness or condition affects them. Imagine what it would be like to be in their situation, and what you would want if it was you!

2. Ask, Don’t Assume!

We often take great lengths to disguise how we are feeling from the general public. However, this sometimes leads those closest to us to believe that we are fine because we look fine. Instead of assuming we are as well as we look, ask how we are feeling today (for real).  This is also important to remember when it comes to giving advice. We respect that you are trying to help by telling us about that new treatment you heard of, but ask before you offer up the info! Remember that we have a team of doctors working to help us, and are constantly working to improve our condition. There’s a good chance we’ve already tried the thing you heard about, or learned it’s not an option for us for one reason or another. Try to understand that we probably feel bad about the fact that it didn’t work out. We sometimes feel as if we have failed because we are still struggling.

3. Be Willing to Learn

I am always flattered when a friend or family member takes the time to ask me about my condition, or to research the condition on their own. Broad research may not help them to understand my day to day life, but it does give them a frame of reference when I share my experiences with them. Learning about the condition of the person that you care about is a great step to becoming an ally that understands and is able to accommodate and advocate for your loved one.

4. Be Open to Making Accommodations

Instead of trying to fit your friend into your preexisting plans, ask them what they need to make getting together work. For example, parties are really hard for me (and many others with invisible illness) because they are very demanding physically and mentally, and often occur in loud and bright environments. For me, things that help are meeting in a quiet place, making plans in the afternoon (generally my best time of day), and making plans one on one or in smaller groups of people.

5. Be Flexible 

For many of us, the way we feel and what we are able to do changes from day to day (and sometimes hour to hour). Sometimes, being willing to keep plans up in the air can be an absolute lifesaver. We want to spend time with you, and if you are willing to be flexible about how, when, and where we do so you, we will love you forever. By being flexible you can take a heavy burden off of our shoulders, and reduce the sacrifice that we make to spend time with you.

6. Don’t Take it Personally

Still, inevitably there will be times when no matter how flexible you were, or how many accommodations you were willing to make, we just can’t do whatever it is that we had planned. Try to understand that we aren’t unreliable, our bodies are. We really want to spend time with you, and although I know it’s disappointing when someone cancels plans, try not to take it personally. Do your best to be understanding and get excited about next time. If you really miss your friend, you could offer to come over and relax together. Sometimes showing up says more than you know.

7. Believe (in) Your Friend

This one is pretty simple, but very important. Make the choice to believe what your friend tells you about their life. Understand that while some people will always suspect that they are faking or exaggerating their condition, in actuality they just spend a lot of time faking well. Believe that with the right accommodations, they still have great potential.

8. Be an Advocate

If you are out in public with your friend or family member, you may start to notice that there are people who don’t understand that illness and disability cannot always be seen, and can occur in people of any age. Healthy people often equate disability with old age and/or the use of a mobility aide (cane, walker, wheelchair, etc…). Commit to helping the people around you to understand that disability comes in many forms, and does not discriminate in regards to age or physical appearance. See #2 and ask your friend whether they are comfortable with you speaking out when others are less than kind in their company.

There are undoubtedly more ways than these to be an ally to someone living with an invisible illness or disability, but this is an excellent start. This #InvisibleIllnessAwarenessWeek, commit to be an ally for someone that you love! You could be the person that makes their world brighter.

 

 

Dysautonomia & EDS

Dysautonomia, or dysfunction of the Autonomic Nervous System (ANS) is frequently seen in people with Ehlers-Danlos Syndrome (EDS), although not everyone with EDS develops autonomic dysfunction. The ANS regulates things your body does automatically, such as maintaining blood pressure, heart rate, digestion, and temperature control.

Dysautonomia is not rare, but it is under-diagnosed. This is largely because despite it’s prevalence it is isn’t recognized by many doctors. Dysautonomia International is working to correct this. Still, it’s not a surprise that even after having a positive Tilt Table Test (you can learn more about the test and my experience with it here), I had to see more than one doctor just to receive the blanket diagnosis of Autonomic Dysfunction/Dysautonomia. The first cardiologist that I saw wasn’t confident that he could make the diagnosis even after my results indicated that I met the criteria for more than one type of dysautonomia. The cardiologist that I currently see believes that I likely have multiple dysautonomias and differentiating them will be of little value for treatment. The types that it is suspected that I have include: Post Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), and Neurally Mediated Hypotension.

During the test, my heart rate increased dramatically (by about 80 bpm) and my blood pressure dropped with just as much gusto. I never actually lost consciousness, but was in a state called “near-syncope” which means I nearly passed out. The test was basically a way of calling forth an extreme version of my day to day symptoms. I regularly experience lightheadedness, dizziness upon standing, unstable blood pressure and heart rate, slowed digestion , excessive sweating, and heat and cold intolerance.

After the test, I was given the recommendation to increase my salt intake, along with drinking (even) more water, and wearing compression gear (starting with the athletic leggings and moving to medical grade if needed). Unfortunately, adding salt to my diet was a BAD idea where my migraines were concerned. This is just one example of how having multiple chronic illnesses increases the difficulty in managing each condition. As a result I have since given up the extra salt, and added a beta blocker to my routine. I’m happy to report that after a few weeks, the medication seems to be helping quite a bit. My balance has improved (I fall less), and my ability to stand for extended periods of time and be active has increased. I am optimistic that I can use the medication as a building block for increasing my activity level and my level of physical fitness which should in turn continue to help improve my Dysautonomia symptoms and joint stability.

Source:

Dysautonomia International 

EDS & The Eyes

Recently, my eyes became very dry and irritated. Because it was more or less time to go to the eye doctor for a new prescription anyhow (read: I’d been ordering my contacts online with an old script for far too long) I decided to make an appointment.

Because EDS is a connective tissue disorder, it effects all body systems. The eyes are especially susceptible to difficulty because they are 80% collagen (the substance affected by EDS). Some of the eye problems that EDS can cause include: Eyelid laxity, lens subluxation, thin cornea, photophobia (light sensitivity), dry eye,  high myopia (nearsightedness), posterior staphyloma/blue sclera, angioid streaks, retinal detachment, cataracts, glaucoma, and macular degeneration. Because of these risks, people with EDS should have a detailed eye exam each year.

Personally, I am lucky to only have experienced a small number of these things! I do have myopia, photophobia, and dry eye. I also have some abnormalities in the vasculature of my eyes. My ophthalmologist recommended that I  update my glasses (it’s been years since I got a pair) and wear them more often in order to give my delicate eyes a break from my contacts. She also prescribed contacts that are specifically for people with dry eye.

I was not pleased about the idea of wearing glasses more often at first, because I started wearing contacts when I was 10 or 11 years old and am very accustomed to having them in most of them time. Eventually though, I decided to use it as an opportunity to pick out a fun new set of frames, a pair that I thought I’d be tempted to wear more often. I am happy to announce that this approach has been quite successful for me! 

I will be sure to make my yearly appointment a priority now that I know the risks EDS poses for my eyes. 

Source:

Driscoll, D., OD, Neumann-Potash, L., RN, MN, & Wyse, P., MD, PhD, FRCS. (2008).Opthamology Medical Resource Guide [Pamphlet]. Ehlers-Danlos National Foundation.

Disclaimer: I am not a doctor. I am simply describing my experience. If you have any concerns about your health, please consult with your physician. 

The Bliss & Bravery I Found in Switching Gears This School Year

Fall has always been my favorite. A big part of that, I think is that I am one of those weirdos that LOVES “back to school” time. As a school psychologist, I even chose a career path that would allow me to go “back to school” for the rest of my life. I can think of so many logical and well thought through reasons that I chose school psychology, but I can’t help but wonder how much of it had to do with my love for the excitement that comes with this time of year. I have always been enamored with the ritual of choosing new supplies, and new clothing. Organizing them, and preparing myself for a fresh start.

While I don’t think I’ll lose my affinity for a brand new pen or a pristine notebook anytime soon, it feels wrong to go without saying that this year is different. This is the first year since starting nursery school at at age 2 that I will not “go back to school.” After graduating high school, I moved immediately to college, and then on to grad school after that without taking so much as a gap year. Again, as a newly wed, I sprung directly into the back to school season of my internship. After that, I worked nearly two years in my profession of choice before admitting with much sorrow, but also hope, that I could no longer meet the demands of the position.

This fall, I am working in a job that I love (albeit part-time). I am grateful that this flexible job allows me to still use my unique skill set and training as a caregiver and behavior consultant for a family with four beautiful children, two of whom are on the autism spectrum. I will admit that I am sad that I am not returning to work with my colleagues, but I will also gladly admit that I am excited to be helping four little people prepare for their own adventures this school year.  I have braved the aisles of Target, and helped young people that I care deeply about make their own choices and build their independence. I have attended meetings on the other side of the table, as a concerned caregiver rather than as a school representative.

I feel free; Free from the less than glamorous sides of being a special educator. The paperwork and the pressure. But also the need to pause for a moment and recognize this new season in my life. To say out loud that I am not going back to work in my chosen field this fall because I am disabled by my chronic and invisible illnesses. The irony isn’t lost on me that this is so hard for me to do as a special educator.

I guess, most of all as this school year begins I want to wish love and luck to my fellow educators, who find the energy and perseverance to  do what they do for “their kids” despite all of the difficulties. I want to wish the same to my former students, to the the kiddos who are now “mine” (the very small group of young people whose lives I hope I am impacting in some positive way), and lastly to myself because goodness knows I’ll need it as I continue on this journey to accept myself exactly as I am and give what I can, when I can.

 

 

How To Fight Chronic Illness Like A Gymnast

Image Courtesy of Lisa Kaman Kenning of Mezzaluna Photography in Huron, OH (Please excuse my lack of toe point – those boots were rock solid) 

You guys, I know I’m behind because I’ve been in a migraine coma for weeks now, but the #FinalFive is cleaning up in Rio!

As a former competitive gymnast, and mega-fan of all things related to the Olympics, I couldn’t be any happier. As a person who has been really sick lately, its a little discouraging to see that there are people out there my age and older in the midst of Olympic glory. If you like me, are feeling a little bummed, try a different mindset. Remember that you’re a fighter too.

Generally, I don’t like to think of myself as fighting chronic illness, because I recognize that my illness is a part of me, and being at odds with myself is silly. That said, sometimes this life is hard. Sometimes it is a fight, and in these times I fight the only way I know how, like a gymnast.

Although I’m no Olympian, the sport I love taught me a lot of valuable things during my formative years. In honor of TEAM USA, I’m going to share some of the most important lessons gymnastics has to offer for a person with a chronic illness.

When You Fall, Get Back UP!

This is gymnastics (and life) 101. You are going to fall (figuratively, and if you’re like me, literally too). When you do, get back up and keep going like nothing happened. You can take time to review WHY you fell, and work to make things better when it’s all over, but in the moment, the most important thing is to get back up.

Set Goals For Yourself (That Don’t Depend on the Actions of Others)

Our coaches impressed on us that we shouldn’t set score goals, because we don’t have control over the judges. Similarly, setting a goal to be pain free would be haphazard. Of course that would be ideal, but I don’t have complete control over whether and how well treatment works. Instead, I set goals that I CAN accomplish. I can choose to eat in a way that supports my optimal health. I can choose to complete my physical therapy exercises. I can work to make sure I remember all of my medication. See what I mean?

You Are Stronger Than You Think You Are, Act Like It 

One of the coolest things that I learned from my years as a gymnast is that I can do hard things. So can you. It doesn’t mean that I should always push myself to do those things if it’s not necessary or is going to come back to bite me later on, but it’s so so helpful to know when I have to do things that are hard, like medical tests and procedure, or power through something that must be done. I can do it (whatever it may be), and if I so choose, I can even do it with a smile. That’s what gymnasts do.

Believe That Nothing is Impossible

This is a fine line for people with chronic illness or pain, i know. The word “can’t” was not allowed in my gym. We were required to do push-ups every time it came out of our mouths. That’s because you never know what you actually can do until you’ve tried (and tried again, and again, and again). So this is my rule, always try. If it doesn’t work out today, it’s okay, but don’t decide that it will never happen. Be like Alice in Wonderland! Some days I believe (and) do six impossible things before breakfast (or at least things which I thought might be impossible that day). On other days I don’t get anything done at all, but I believe that I might be able to do them again tomorrow!

Never, Ever Give Up (Never Say Die)

Don’t confuse this one for never rest. Rest is important. Don’t confuse it for not feeling natural emotions (of course you will feel them when you meet adversity). Take time to rest, feel what you need to feel, and then keep on working. Whether it’s working at a new skill in the gym, or working on making progress in the treatment of your chronic illness, don’t give up. Keep reaching for the best possible outcome.

Image is a picture of my relatively more healthy self, rock climbing in college! 

(special thanks for this post goes to all of the coaches whose messages will forever resonate in my heart)