You Can’t Get There From Here- The truth about accessibility

Until I became handicapped myself, it never really occurred to me how inaccessible much of the world is. It may appear at first glance as though accessibility is something that people think about a great deal and put a massive amount of effort into making a reality. Sadly, upon closer examination it becomes clear that accessibility is often just an illusion, sometimes a rather dangerous one.

From handicapped spaces with sidewalks blocked by concrete barriers and curbs, to shops fitted with motorized carts and no space to use them, to a million other little things no one ever thought of, handicap accessibility is at best partial.

Take the motorized carts found in most large department stores and groceries these days. What a great thing to offer your customers, right? I mean after all you know your store is large, anyone with limited walking abilities is going to have a hard time shopping. Offering mobility limited shoppers a motorized cart is a great idea, I really couldn’t agree more. But when the thought about using a motorized cart in your store stops at the door, it can become more frustrating than you can imagine. 

Have you ever tried to use one of those carts?  If you have I bet you have run into something, somewhere in the store, or you had to backtrack in order to get where you wanted to go. The fact is, between clothing racks, aisle displays, and end caps, many stores are not really navigable for the motorized cart. 

I have yet to drive one through a clothing department without moving racks. Yep that’s right, you heard me right, I move the racks. No, I don’t get up and push them out of my way, the cart does it for me, as I swear and become frustrated.  Because, once again, I’m stuck in a clothing department. Now, I’m pigheaded enough to go ahead and make a path through those racks. Imagine all the well-behaved proper folks driving those? They must avoid those areas all-together or risk becoming stuck. So Grammy can go to Target, but she can’t shop for clothes there. That’s not accessibility. 

The next, most frequent, frustration I run into in public is handicap accessible bathrooms. Don’t get me wrong, handicap accessible bathrooms are generally properly sized and definitely essential for navigating out in the world. The last thing anyone wants is for someone to not be able to access a bathroom if they need to. I’m grateful that the world is full of them. However, it baffles me that nowhere is there a way to wash your hands inside a handicap stall. Consider this, being a  person who uses a cane, crutches or wheelchair. You go into the handicap stall, do your business, flush and get ready to leave. Now you have to touch the arms of your wheelchair or the handles of your crutches or cane, so you can get to a sink outside the stall and wash your hands. Anyone else grossed out? What if I told you that most canes these days have a spongy handle? Pretty disgusting huh? A simple hand sanitizer dispenser near the toilet would help greatly to lower my gross out level.  

While we are discussing bathroom struggles, how about those doors? If you are weak, using crutches, a wheelchair or a cane, doors are likely one of your biggest struggles. When I go into a public restroom at a restaurant, I tell the people I’m with send someone if you don’t see me in 10 minutes. Why? Because I’ve been trapped in the bathroom more than once. Heavy fire doors, while understandably helpful in a fire situation, are a massive pain in the ass if you are handicapped. In the day and age where we have automated practically everything, can we please also automate the doors? I have nightmares about being trapped in a bathroom. At the very least, I think we can agree that all medical facilities should have accessible doors. Believe it or not, the local bone density scanning center does not have handicap accessible door button. Crazy huh?

Speaking of crazy, there is nothing filled with much more crazy than handicapped parking. Between people parking where they shouldn’t and spaces that were never really designed for handicapped people (a sign does not create accessibility), we have a really loooong way to go to solve this most common issue. Take a closer look at those spaces, where are they? Some are on the wrong side of the building, with ramps and doors accessible for wheelchair users on the opposite end of the building. Some have lovely concrete barriers between them and the sidewalk. A massive barrier to anyone with wheels or a balance issue. Many more are snugged up next to broken curbs, crumbling medians, and potholes. Minor irritations if you have no physical limitations, dangerous pitfalls if you are mobility challenged.

While we are on the subject of danger in accessibility, lets take a closer look at ramps and entryways. Before I became handicapped I never really paid much attention to these things. I took for granted when I saw a ramp that it was functional and safe. I didn’t need to use them, so I never really looked close. You’d be shocked how many ramps are not really accessible. Frequently the bottom of the ramp or entrance to the ramp is deteriorated and eroded.  I’ve even seen many ramps that end with a small step, I wish I was kidding.

Other ramps are so steep you’d have to be a daredevil to take a run at them. It’s a matter of attending to detail.

Existence of a ramp doesn’t provide access unless the ramp is safe and accessible. All year. This means not attending to ice at the bottom of your ramp makes it inaccessible. You’d be shocked how many times I’ve had to point that out when I’ve gotten inside an establishment. It’s like people somehow think those in wheelchairs who’ll be using that ramp can’t slip.

Sure, they are less likely to fall down, but they also might not be able to come in and shop at your store or eat at your restaurant. If they do come in, they may slide into your parking lot or the street at the end of that icy ramp.  Not great options. Salt the ramp when you salt the stairs.

Having limited mobility comes with a lot of challenges.  Taking a little time to look at your place of business from the perspective of someone with limited mobility can make a huge difference.  Every little thing we can do to make each other’s lives less of a challenge can be a huge deal to someone who is struggling everyday.

Do you struggle with limited mobility?  What do you find frustrating and inaccessible? 

In Pursuit of Hope, Magic, and Better Days

Ever wake up and immediately feel unsure you have what it takes to get through the day ahead of you? Yesterday was one of those days. I will admit, there were a few minutes of debate, during which I almost let myself off the hook. Had it been a “normal” day, I’d likely have canceled whatever plan I thought I had, medicated up, and let the flair have me. But yesterday was not one of those days. I knew I had to rally, no matter what my body was asking for. I had important things to do. So rally I did. And I am so glad that I pushed through.

Yesterday turned into one of those rare days when the flare calms down. Starting the day barely able to breath due to inflammation surrounding my lungs (isn’t RA grand?), by 11 that several day long irritation had finally come to an end. Just in time for me to take a deep breath and prepare for an appointment with the Best Ortho In the Land. Yesterday, the amazing magician who installed my new hip looked at my creaky, battered knees. The verdict was somewhat expected, they are junk, left more-so than right. As the lady walking around with these knees, I was not at all surprised by this news.

The surprise came from the treatment options, there are some. If you’ve faced deteriorating and destroyed joints, you probably know this is often not the case. My hip? Shots didn’t touch it, only other option was replacement. Not so with these crabby knees. Though they are both well on their way to needing a swap out, there are things that can be done. There are options to increase my mobility and get back my active life. That statement is precisely why he is The Best Ortho In the Land. Mobility is the focus, living life is the focus.

So we started with shots and have begun the process to get a lube job approved. Yep, that’s right, just like that lovable tin man, my knees need a little oil, and then we just might be able to make it a few years before we need to see the wizard about a heart, er, I mean knees.

Leaving the office with a plan for hope, and already slightly less mad knees, I turned to the rest of my day, not realizing my magic for the day was not done. After a pit stop to fuel up, my driver, our homeschoolers, and I decided to give a bog walk a try. We headed out with the promise to use my cranky body as a gauge and turn around when I felt I needed to. I didn’t need to turn around! We wandered and explored for about a mile all told, the longest trek yet, for me and my amazing new hip.

Orono Bog Walk

Through woods, across streams, out through the most beautiful bog, and back again. Sharing my love of nature with my son and niece, watching the magic of their curiosity and wonder at the amazing species living there, it was worth every step. I was in nature, I was teaching, that my friends, is an exceptionally happy place for this girl.



I may be battered, I may have limits, but they are not going to stop me from living a life filled with magic.

The hope that I’ve clung so desperately to, the hope for the mobility that will allow me to share the hidden, natural, magical world with my youngest son, the hope for strolls in the woods and walks on the beach, this little light that I’ve clung to so desperately when my world got so very small, now gets bigger and brighter everyday. I may be battered, I may have limits, but they are not going to stop me from living a life filled with magic. I’m much too tenacious for that.

What dreams are you reaching for in spite of limitations and struggles?

Do you get your flu shot? Vaccines and choice, why it is important.

Do you get your flu shot?

A question long-asked at doctors offices that suddenly appears to have a bigger meaning to some.  Unless you’ve been hiding under a rock or somewhere deep in space for the last 5 years you know the debate is on about vaccines in this country. Pro vax and anti-vax have become hot button words akin to pro-choice and pro-life. Both sides fight adamantly for what they believe, both sides believe their decisions are being made based on facts. And like any belief-centered social grouping in modern times, both camps are certain theirs are the only real facts.

A recent visit to the doctor’s office quickly reminded me of this new phenomena. My standard reply to the do you get a flu shot question, no for anyone who’s interested, was met with a sneer, clearly demonstrating to me which camp the questioner falls into. Now you might think that all medical professionals fall into the provax camp.  Perhaps the most interesting thing about the debate surrounding vaccines is the fact that scientists and medical professionals actually do not all believe all vaccinations are safe and effective. Watching for subtle signs in their facial expressions, or for them to outright tell you their opinion, may give you a clue as to their vaccine belief system.

Why are vaccines being treated as though they are a belief system is something that’s very much been puzzling me lately. I understand that there are certain vaccines that protect us from diseases that are very deadly and we definitely don’t want running rampant through our communities. This isn’t however the case with all vaccines. Some vaccines protect against rarely deadly diseases like chickenpox, others like the measles vaccine, have shown themselves to offer variable protection and recently their efficacy has been called into question. The most recent outbreaks suggest that vaccinated individuals are shedding measles vaccine into the population causing outbreaks among vaccinated individuals.  Other vaccines have very excellent efficacy rates and appear to offer extensive, if not lifelong protection against disease transmission.

As vaccines have been developed to cover a wide range of diseases by a number of different methods and using a number of different technologies, it only makes sense that not all vaccines are created equal. Vaccines are not equal in strength, are not equal in necessity, they are not even equal ineffectiveness. So why approach the vaccine debate as though it is an all-or-nothing event? This is where I believe we are going wrong as most “anti-vaxxers” are not anti-vax so much as pro asking questions. 

With such a wide array of effectiveness, known side effects, and diseases being covered by these vaccines, it only makes sense to look at them on a case-by-case basis. This is exactly what you would do with any other medication or substance you put into your body. You  would not, for instance, take every pain medication just because the studies surrounding Tylenol suggest they are fairly safe. Those studies are not supposed to convince you that narcotic pain relievers are also okay. Despite the fact that both substances treat the same condition. This is how many people look at vaccines as well. 

If science is truly the guide for those standing behind the safe and effective and world-saving vaccine push then they will not mind this approach a bit.  In fact,, they will have taken that approach themselves. If they are pro all vaccines, well, then that is a sure sign they’ve not delved too deeply into the science and are advocating for what they have been told is good for them.  While I appreciate their instinct to trust the health industry, anyone who’s spent a great deal of time inside it will tell you that isn’t safe.

In a perfect world, where everyone involved in making decisions about what people will put into their bodies for the sake of health actually wanted, as the end result, the health of all bodies, vaccines would be safe. In the world where we are today, where profit margins and sales rule the roost, vaccine safety will and should always be the question, not the assumption.  

Do you get your flu shot?  (Remember, this is a no judgement zone!)

Change Is Good (Try Telling Anxiety That)

Don’t Panic!

It seems like I’m telling myself this an awful lot these days. There is no doubt about it, my anxiety is gaining ground. Everyday I feel a little less settled, a little more run for the hills. I’m nervous, jumpy and irritable. Nights are sleepless, days are looooong. There’s no doubt about it, flight or fight is on drip mode, anxiety rules the roost here. Options, let it take me down or figure out where the drip is coming from.

Of course I have a pretty good idea where it is coming from. As I said, it’s been creeping in day by day. This is not the out of the blue, no reason for me to be losing my shit kind of panic-attack anxiety. Nope, this is wow things are changing are you sure about all this change anxiety. Having seen the changes coming, the anxiety faeries have had plenty of time to gather panic packages to bombard me with, all night long. Which is why I’m here writing this at 2am, who needs sleep when you can be nervous about life in general instead?

So, here I am, trying to sort them out. Ever try to talk down anxiety faeries? They are nasty little imps. They look nice enough, like they honestly want to help, but let me tell you, they lie and the little bastards have a nasty bite to boot. Lately they’ve been chewing my ears off about the state of my life. Always a fun topic right?

Part of me says heck yes it is. Because honestly, life is good, actually life is GREAT! Things are bright and beautiful. This spring saw the eviction of some bad parts and the installation of a new hip, feeling better than I have in years, gaining mobility everyday. The extra mobility is allowing me to tame my dreadfully disgusting house. I’m proud to say it’s no longer dreadfully disgusting, just a little gross.

My boys are thriving. The oldest just started college and seems to be settling in wonderfully. My youngest and I have begun our homeschooling journey together. So far, so good, he’s loving math (hallelujah) and I am loving watching him learn how smart he really is. My little passion project, this lovely little blog, is growing and gaining followers. I’ve got the love and support of the world’s greatest husband and a tribe that is simply second to none. Life. Is. Great.

But, try telling anxiety that. It doesn’t care. Probably because it doesn’t believe you. Anxiety has a thousand reasons those things are all going to crap, heck anxiety rants they probably already are crap and you’re just fooling yourself. The nasty little voices in my head wonder if the hip is healing right, if my kids are really thriving, and if I’m just fooling myself that I am any kind of writer at all. They assure me that as good as life seems, something is probably terribly wrong and I just haven’t noticed it yet.

They spend their nights pointing out every thing I have not done, the projects unfinished, the dishes I abandoned to sweep floors instead. They insist, always, that I am not doing enough, not trying enough, I’m simply not enough. I battle back with stress management, with reason and logic, with hard won lessons. I am alive, therefore I am enough? I repeat it until the question mark becomes a period. I am alive, therefore I am enough.

I’m not sure when or if these nasty little faeries will give up the current round of torment. Anxiety induced by change is pretty hard to predict. Until they do, I’ll just keep breathing and chucking rocks of reason at them.

Where is TenaciousME?

If you are a regular follower of the tenaciousME blog you may be wondering where I am these days! Don’t let the lack of blog posts fool you, I am busy at work on tenaciousme.org! I’ve been working on updating and adding to the website! It has taken soooo much longer than expected! Kudos to web content developers everywhere, there is more to building a quality site than I imagined!

Browse through the site and you will discover several new resource pages loaded with tips and tricks for living a tenacious life with autoimmune disease. Hope you find it helpful! I promise I will be back to “normal” blog posting soon! Meanwhile, hope you enjoy what I’ve done so far!

What do you think of the new look? Is there information you’d like to see here that is missing?

Time Flies (whether you are having fun, or not)

Hard to believe it has already been a year since I made the decision to start sharing this journey with all of you and started the TenaciousME blog! What a year it has been! Full of challenges new and old, milestones, surgeries, struggles and triumphs, it really has zipped by quickly.

It has been a year of learning to be brave. A year of stepping out of my comfort zone and remembering how to take chances. A year of healing and growth. I’ve been happy, sometimes hesitant, and always grateful for the chance to share it with you. A shared burden is, after all, much easier to bear. Although no one can literally carry the burden of chronic disease for you, knowing there are people who understand, does make the load feel lighter. Hopefully I am helping you lighten your load as much as you are helping me with mine.

A shared burden is, after all, much easier to bear.

Thank you for joining me on the journey. Together we can Learn to Lean, we can help and support one another on this journey, Unleash Our Secret Super Power, and be Reborn! Sound good? I’m ready for another amazing year together, how about you? Know someone who would enjoy this blog? Help me grow by sharing my blog with them!

10 Tried and True Natural Pain Remedies

Let’s face it, life is full of pain! Headaches, back aches, cranky joints, injuries old and new, no matter the source of the pain, nature has given us some powerful remedies for that pain. Here are the 10 Natural remedies I find most effective for managing pain.

1. Peppermint Oil- My general go-to oil for a variety of things, peppermint oil has some powerful pain killing powers. Peppermint oil can be used topically neat or diluted in a bit of carrier oil or as a hot compress. Use cautiously in summer as it makes you more sensitive to sun exposure.

2. Turmeric- Most pain is caused by inflammation. That makes turmeric, with its amazing anti inflammatory powers a heavy hitter when it comes to controlling inflammation based pain. Taken as a supplement or a tea, it can reduce daily pain from chronic conditions.

3. Heat/Ice- Both tried and true, heat and ice can both be useful in soothing pain. Ice is best used for new injuries or to calm inflammation. Heat can be used to soothe aching muscles and painful joints, though caution should be used when heating already inflamed joints, as it can increase inflammation as well.

4. CBD/Marijuana- Illegal in some state, controversial in others, marijuana and marijuana based CBD oils have gained popularity over the past decade as their pain control properties have become more widely recognized. Available in a variety of forms, with properties that also treat ailments such as lack of appetite and insomnia, this medicinal plant is a serious heavy hitter.

5. White Willow Bark- Used for centuries for its pain relief and anti inflammatory properties, the bark of the white willow tree contains salicin, also found in Aspirin. Available as a tincture or tea, also wonderful as a compress, this bark is an excellent pain remedy.

6. Yoga/exercise- I know, you hurt, the last thing you want to do is move! Unfortunately/fortunately most sources of pain will be helped by gentle movement and exercise! A little bit of yoga or other gentle exercise everyday can help heal a painful area. Be sure to check with your doctor and start small!

7.Arnica- The flowering herb arnica is an excellent pain remedy. It has been used for centuries as an internal or topical pain remedy. Available now in a variety of creams and oils, it is excellent for relief of arthritis, muscle pain, bruises and sprains.

8. Capsaicin- Derived from peppers, capsaicin is a wonderful pain blocker. Used topically, it stops pain signals from being sent to the brain. Capsaicin is found in a large number of well know products including Icy Hot.

9.Rest- Pain signals are often a sign from our body that the area crying out is in need of rest, so don’t ignore them! Taking it easy for a few days can allow tissues to heal and prevent further irritation that leads to a more permanent injury. So, listen to your body! Take it easy on sore, swollen parts!

10. Water- Is she serious? I’m in pain here and she wants me to drink water??? Yes, yes I do! Water is more important than we give it credit for. The average person needs 64 oz of water a day. When you are hurt, you need more, because water is how our body cleans out waste and toxins! Waste increases when your immune system is working to heal something. Increasing water intake helps your body clear out the garbage and nourish cells. So drink up!

Unleash Your Secret Super Power

I have a secret. I’ve suspected for a long while now, but until recently, still had some doubts. Having worked through those, I am now sure. Want to know my secret? You are more powerful than you believe you are. Yes, YOU! I know, I know, I don’t even know you, right? That’s OK, I don’t have to. I know two things about you that make it so, you are human and you are alive. All the proof of your amazing potential I could ever need.

No, I’m not another overly-positive person looking to sell you the secret to making your dreams come true. I’ve got no big, crazy, fool-proof scheme and cannot even guarantee what I’m sharing with you will result in cash money. I believe it can, if that’s what you want, but there are no guarantees. This is your life to live and how it turns out depends more on you than you probably believe.

We tend to go through life focusing a lot of energy on what is expected of us by the outside world, pouring endless time and energy into meeting the goals society has set for us. For some, pouring themselves into that mold fits like a glove and life feels well lived. For many of us “what we should be” just doesn’t seem to fit, leading to feelings of failure and inserting some crazy belief that we could in some way be inadequate to live our own life. That somehow, we arrived here, in this skin, without the tools to be us. Ludicrous I say. Not possible.

I believe the point of this entire crazy experience we call life is to be who we are. That’s it, just be you. No big philosophically poignant, overarching meaning of life. Just be here, be you, be alive in the ways you were designed to and all will be as it should in time. I know that seems a little over-simple perhaps, I mean, how can we not have a bigger purpose, right? But then I’d argue, what is a bigger purpose than living an authentic life? And, by being your most authentic self, might you inevitably find yourself working for your highest purpose?

Consider the things that spark you, the things that bring you joy. It is no accident that each human you meet has a different answer to that question. We are, by design, individuals. This is no ant colony full of clones. We are humans, each with unique gifts and talents. Your unique talents and gifts are what grant you power. Your ability to learn from mishaps and change your approach, is a gift. Your unique perspective, is a gift. The way your brain works, is a gift. The incredible, adaptable nature we each possess, is a gift. So, get out there and focus on using the power you’ve been given. Nurture your gifts, embrace your individual super powers, be unapologetically, authentically you! The world is waiting for You.

Reborn

Hectic Life Survival Strategies: How proper prior planning prevents piss poor performance.

Next week, I’m going to need twice as many spoons. No, I’m not preparing for an ice cream social, just a crazy week full of too many obligations. If you have a chronic disease, and are familiar with spoon theory, you know what I mean. For the rest of you, spoons represent the energy and effort needed to get through normal everyday things, and just like your kitchen drawer, I wake up to a limited number everyday, that must then be used to dress, cook, eat, and do whatever chores and activities I need for the day. The big kicker? Some days, I wake up to find someone took ½ the spoons! Not cool! This means there will be things that won’t get done. Or, that I will have to borrow against tomorrow’s spoons to get through today, leaving me with less spoons for the next few days as I try to get back on track.

Image Courtesy of Redefining Images

Looking at the schedule for next week, doctors appointments and graduation activities, on top of normal life, I can already tell, there is just no way I have enough spoons for that. So now what? What does one do when they know they are going to be in over their head but needs to take that plunge anyway? Look for floaties? Seems reasonable. Try to charter a boat? Even better. If the issue were water, how easy I cold solve it. Unfortunately, it is not so simple, the issue is energy and a mobile body, both quite limited resources in chronically ill me. So, gathering real floats and boats won’t help me, but some metaphorical ones, well, that just might work.

So, I am making a plan. A plan to conserve spoons and just keep swimming. A plan that includes throwing a few things overboard if I have to, doctors appointments can be rescheduled, graduation is coming, rather I am ready or not. And boy is that going to take a lot of spoons. My baby is graduating. Emotional much? If you know chronic disease, you know stress and other negative emotions, like the deep deep sadness of a baby about to leave the nest, can turn up the fires of chronic disease. So, I am going to be stressed, emotional, and have too much to do, see why I’ve been thinking so much about my spoon supply?

So, first, floaties, I wasn’t kidding, they will help. So what’s a floatie when you have chronic illness? Rest, exercise, nutritious food, and herbs that will reduce pain and inflammation. Being sure they are all included in my plan, will help increase that daily spoon supply. They will help me stay afloat, even if I am technically out of spoons.

Next up, preparation. Because, as a cousin of mine loves to say proper prior planning prevents piss poor performance. It’s true, planning ahead for the way too busy times can be a massive help. Anything I can do to get ready for next week, this week, will save energy for the things I can’t do ahead. Laundry, housework, gathering things needed for graduation and the celebration of the amazing grad, grocery shopping, meal planning, all of those things are on the to do list for this week, so I don’t have to find time and energy for them later.

Naturally, with a big to do list and challenging week ahead, I’m going to need help. Learning to delegate, to allow people to help get things done, has been critical in my healing journey. Now that I know I don’t have to do it all to get it all done, I am much better at reaching out and asking for help. And my awesome tribe always comes through. As we gear up to celebrate the accomplishments of one of our own, I am certain to have all the help I could want or need.

Although I know it will definitely be a challenging week, with a little planning, prep, and assistance I am sure I can get through it. If all else fails, I’ve got a boat reserved for the party at the end of the week, you would probably call it a wheelchair, I see a way to stay afloat, even if I’m completely out of spoons.

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