Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Surviving Christmas With Rheumatoid Arthritis
It’s almost here! The most wonderful time of the year, or so the song says. If you have rheumatoid arthritis it may look more like a danger laden obstacle course than a time for joyous celebration. Filled with stress, commitments, and expectations, Christmas is by far the most challenging holiday. Between the search for the perfect gift, the energy needed to turn your home into a magical Christmas wonderland, the cooking, cleaning, baking, wrapping, holiday parties…it can all become a bit overwhelming for those of us who have limited resources for getting it all done. Whether that be money, time, energy, or all three, it can leave an RA warrior feeling anything but triumphant. While we can’t cancel this busy holiday (or can we?) there are a few ways we can make it more manageable.
First and foremost, you’re going to have to pace yourself. Rome wasn’t built in a day, neither should the monumental undertaking that is Christmas. One of the bigger challenges we face as RA warriors is a limited amount of energy and strength to tackle projects. Recognizing and respecting this fact will go a long way toward making the holiday less draining. The biggest key seems to be not trying to do it all, whatever IT is, in one day. So, wrap a few gifts, then walk away, take a break, go prep some food. Varying the task is always going to make our bodies happier than chaining ourselves to the giftwrapping station or kitchen for half the day. So, switch it up, take your time, and remember to rest and stretch. This is a cross country race, not a sprint, you’re going to need to pace yourself to cross the finish line.
Crossing the finish line is going to require a lot of carefully planned work. Some of which, you really don’t have to do. Wait, what? There are things that don’t have to be done you say? Well then why am I doing them? Great question, why are you? Take a few minutes and jot down your Christmas to do list. Now, give it a good long look. Are there things on the list that aren’t really necessary? Anything that can be skipped? Is there something that you know is going to take every ounce of energy you’ve got? Cross it off and move on. Yep, I said it, you don’t have to get it all done. If you can’t do it, don’t.
If you can’t skip it, delegate. Let’s face it, as much as we’d like to just cross off that entire to do list and crawl back in bed, Christmas is coming, ready or not. There are things that are going to have to get done. You still don’t have to be the one to do them. As a holiday that is entirely about family, giving, and sharing love, there is really no better time to tackle something as a family. Delegate some of those challenging tasks. Recruit a family member to help with the wrapping, cleaning, and decorating. Invite them to join you in the kitchen to bake and prep holiday meals and treats. Remember, many hands make light work. No one ever said you have to do it all to get it all done. In fact, you don’t, delegate and move on. And don’t feel bad about asking for help, this is everyone’s holiday, there is absolutely no reason everyone can’t share in the work needed to make it happen.
If you can’t delegate it to a family member, hire it out! Give yourself the gift of a more enjoyable Christmas, hire someone to come tidy before guests arrive, get that meal catered, hire a local teen to help with decorating. The energy and pain it saves you will be well worth the expense.
Your going to need that energy to enjoy the festivities. Remember to pace the enjoyment. Christmas can be packed with parties, concerts, gatherings, and trips to see Santa. Plan to be able to enjoy them. That means scheduling down time in that hectic schedule. One thing we cannot do, is enjoy life when we are running on empty. So, don’t sign up for a schedule that will take all your reserves and then some. Save that energy for the things that matter most. Say no to the parties of acquaintances, skip the office party if it is not convenient. Don’t be afraid to turn down holiday invites and save the energy for the ones you most enjoy. It’s supposed to be a joy filled holiday, don’t spend it in misery because you’ve said yes to all of the things.
When you do choose to attend an event or gathering, do it from a comfy seat. Sit down, take a load off, sit back and take it all in. Even if you are the hostess. You’ve prepped it all, delegated the rest, it’s time for the fun, let yourself enjoy it. Grab a plate of food and your holiday beverage of choice, sit back and watch it unfold. You’ll enjoy it just as much as you would being up in the middle of it all, and you just might catch a glimpse of some magic from that comfy seat.
Last, but certainly not least, don’t forget to take care of yourself! This is no time to skip all the self-care rituals that keep you moving! If anything, it is a time to double down on self-care so you can find the spoons to get through it. (Spoons? Not sure what I mean, look here.) So, take the supplements, build downtime into that hectic schedule, take a nap, eat real food between all those lovely treats, and try to get some sleep at night. The holiday will be so very much more enjoyable if you do.
While there is no doubt that this is the most challenging holiday season to get through, it doesn’t have to feel like an uphill battle. Taking time to care for you, pacing yourself, delegating, saying no, and paring down on the things you have to do will make it much less of a battle. Save the battling for the really tough stuff, like tying your shoes.
What do you do to get through the holidays? Drop your holiday survival tips in the comments! Looking for that perfect gift for your loved one or dear friend with RA? Don’t miss our Gift Guide for Rheumatoid Arthritis.
Merry Christmas from TenaciousME!
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Best Gifts for Rheumatoid Arthritis 2019 Edition
If you have a loved one with Rheumatoid Arthritis (RA), you have probably noticed that it comes with its own set of challenges. Aching joints, exhaustion, and physical limitations are likely to rule their lives. Give them the gift of relief this year! We polled 100’s of RA patients to find out what they wish for this year. Here’s what they asked for! At the top of the list, by a landslide were gifts for staying warm and toasty, with electric blankets being the number one top requested item! Read on to find out what else your arthritic loved one would be overjoyed to unwrap this year!
Gifts for Staying Warm and Toasty
Whether the goal is to warm up aching arthritic joints or to keep them warm and toasty, these gifts are sure to give the arthritis sufferers on your Christmas list some cozy relief. The top choice, by a landslide is an electric blanket or wrap, it seems everyone finds relief from aching joints in a toasty blanket. Not surprising, they also had a load of other ideas for gifts to keep those joints warm and happy, including heating pads, heated seat covers, heated writs wraps, hand warmers…if it provides warmth, they want it! Also on the list of things they want to stay warm and toasty this year are cozy bathrobes and fuzzy pajama pants, warm socks, and finger-less gloves like these beauties from LoveMeKnotLAM. RA patients additionally asked for warm shawls and wraps to eliminate the struggle to get into a coat, as well as lightweight warm blankets for sleeping and lounging. Looking for toasty stocking stuffers? How about a pair of heated gloves or a few packages of Hot hands– used by hunters and outdoors-men for decades to keep hands warm in freezing outdoor temps, hot hands are wonderful for keeping hands and feet toasty, they are also excellent for relieving aching hands and feet. Portable and inexpensive, these are great to toss in stockings.
Gifts for Getting Things Done
The next, and by far largest category of gifts RA patients asked for were gifts for getting things done! There is no doubt about it, RA makes everyday things like cleaning, cooking, and even personal grooming a challenge. Help your arthritic friend or loved one out with some of these great gifts that make getting things done a little easier.
Gifts for Getting things Done In the kitchen
If your loved one enjoys baking and cooking, a kitchen aid stand mixer is a must have! This mighty stand mixer will make creating the baked goods they love to make so much easier. It also has a wide array of attachments for doing all the other prep jobs in the kitchen. Slicing veggies, grating cheese, grinding burger or sausage, you name it, there is a kitchen aid attachment to make it easier! It is also the kitchen item most requested by RA patients polled. Another item that made the list many times is a quality blender for making smoothies, such as the Ninja. Other items that made the list of gifts for getting things done in the kitchen are many little electric gadgets that do the work for you, such as electric can openers, wine openers, kettles, jar openers, knives, and pepper mills. Low tech requests included jar openers, bottle openers, kitchen shears, and scissors, because getting into things is the number one struggle arthritis sufferers face in the kitchen! Other items on the wish list include fat handled utensils, chunky or offset handled knives, and easy grip silverware to make meal prep and eating less of a challenge. Last but not least, grab them an oven stick, this handy little tool makes getting things in and out of the oven much safer and simpler and fits quite nicely in a stocking.
Gift for Getting Things Done Around the House
When it comes to getting things done around the house, RA warriors have a few ideas as well. Things that made the list of items that would make cleaning less of a chore include standing dustpans, grabbers, step stools, and long handled brushes. When it comes to cleaning floors, they ask for a lightweight vacuum or better yet one that will do it for them, a Roomba is one of the most requested items on the list. Other helpful items for the house include doorknob helpers, remote control light switches, and grab bars. Think your loved one needs to spend more time not doing things around the house? Grab them a footrest, a book stand and a great book, don’t forget the chocolate!
Gifts for Grooming and Dressing
Some of the biggest challenges folks with RA face involve grooming and dressing. Between hard to reach body parts and impossible to do up buttons and zippers, putting on clothes for the day can be the biggest challenge they face. Make dressing less challenging for them with a dressing stick, a sock aid, or a long-handled shoehorn. Ease grooming tasks with an electric toothbrush, fat handled hairbrush, or a lotion applicator and an adjustable back scratcher for those hard to reach body parts. For easier bathing how about a shower chair, long handled shower brush, or really wow them with a walk-in tub! Don’t forget to throw a few bath bombs and some Epsom salt in their stocking for those long soaks.
Want to let them know you think they are really special? Give them the gift of pampering with a gift certificate for a mani-pedi , a wash and style at their favorite salon, or a spa day!
Gifts for Getting Out and About
From germs to mobility needs, your loved one with RA faces a lot when they walk out their front door. Help them prepare for more enjoyable outings with a walker, a collapsible cane, a portable step, car grab bar, or swivel seat. Make travel more comfortable with heated seat covers, a steering wheel cover, and a remote car starter. Armor them with reusable masks, hand sanitizer, and sanitizing wipes to ward off nasty germs. Live in the land of ice and snow? Prevent dangerous slips and falls with ice cleats for shoes and ice tips for canes.
Great Tech gifts
Living in a technology obsessed world with grouchy hands, aching necks, and other cranky body parts can be a challenge. RA warriors had many ideas for items that make using tech more enjoyable. On their wish list are easy grip device cases, a fat stylus, wireless chargers, hands free devices, and this handy tablet couch. Other items that made the list are this pen mouse, an adjustable standing desk, and speech to text software.
Give the Gift of Pain Relief
There is no doubt about it, the thing your loved one with RA deals with the most is pain! Not the sort of pain you can pop a couple of Advil for, rheumatoid arthritis patients must turn to an arsenal of pain relief remedies to take the edges off their daily struggle. No surprise, the RA patients we polled had a LOT of ideas for gifts that can help ease the pain! They want wearable pain relief like these handy therapy mittens, copper bracelets, memory foam insoles, braces, and compression wear. They asked for pain relief they can slather on or swallow. Requests included cbd oil, turmeric supplements, biofreeze, deep blue rub, essential oils, hemp cream, golden milk electuary, and peppermint rub. They also asked for gifts to soothe the pain with heat and massage such as hot/cold packs, heating pads, a hand spa, hot water bottle, rice pack, foot spa, foot massager, heated neck massager, massage chair, or a tens unit, Also on the list were items to relieve pain through movement like these therapy balls and therapy putty. Want to really wow them? How about a gift certificate for a spa day or a few massage sessions? RA patients polled said either would be a heavenly gift.
Gifts that will Truly Wow them!
When asked what they would want if money was not a limit, RA patients had some really great suggestions for gifts that would change their lives! Looking to really spoil them with something over the top this year? Spring for a hot tub or a therapy pool! The #1 and #2 requested big-ticket items among those polled. Other big-ticket items on the wish list were a spa weekend, weekly maid service, and a personal chef.
The Gift Every Rheumatoid Arthritis Patient Needs
Last but not least, there was one gift that received even more votes than the coveted electric blanket! What does your loved one with RA want most of all? Hands down the number one thing RA patients asked for was the love and understanding of their loved ones. Life with chronic illness is hard, having people who understand that you are struggling and offer their support makes it so much easier to live with. Listen to their complaints, offer to help them with everyday stuff like cleaning and cooking, treat them to a meal in, prepared by you. Offer to join them for a meal prep day once a week. Sit on the couch and hang out with them on a rough day. They will be so very grateful for the gift of your presence and your love.
What’s on your wish list this year? Let us know in the comments, maybe it will be on next year’s list!
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Frost Bitten and Shivering
The sun shines brightly on the shimmering ice,
Frost bitten and shivering, the world comes to life
The light hits my lids and they begin to open
Then I move my big toe and the spell is broken.
With a crunch and crack, I am startled awake,
Back in my body, and boy does it ache
My toes cry out, my spine starts to moan,
I wiggle my fingers and out pops a groan.
Last night as he painted the windows of homes,
That bastard Jack Frost invaded my bones.
He covered them with ice, that crunches and cracks,
From the tips of my toes to the top of my back.
I don’t want to get up, I don’t want to stand,
But deep down inside, I’ve heard a demand,
Though snug in my bed is where I wish to be,
The undeniable fact is, I need to go pee.
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Keep Warm and Carry On- Surviving Winter with Arthritis
The weather today has me grumbly and groany. I remember when falling snow brought feelings of wonder and glee. Now it’s all pain and annoyance, often served with a helping of self pity and heaps of promises to move to a kinder climate one day. There is no doubt about it, the blanket of snow that my younger self adored now brings with it the worst of my RA (Rheumatoid Arthritis) symptoms. No ifs, ands or buts about it, winter with RA, or any of the other 100+ types of arthritis, is rough. But it doesn’t have to be taming a tiger rough, it can be toilet training a toddler rough. Messy, frustrating, sometimes painfully so, but not likely to cripple you. Since winter has decided to grace us with his presence well before Thanksgiving, its time to do what any good New Englander does, dig out the winter survival gear and hunker down. Over the years, I’ve found a few things that help me keep moving when the world freezes over.
The first and probably most obvious is staying warm. If you have any type of arthritis you know what it feels like when you get too cold. With RA that bone chilled stiffness and pain can invade your entire body. So dress warm, layer up. Develop a deep love for cozy sweaters, fuzzy socks, and all things snuggly and warm. Finger-less gloves are a must for anyone with hand/wrist arthritis. Keep those hands toasty, thank me later. Use hand and foot warmers when you go out into the cold. If you are a sports family and spend any time at outdoor sports, get a padded (or even better, heated) cushion to sit on at games. The toastier you are, the less you will ache later. At home, heated wraps, heated blankets, and heated mattress pads all help beat the cold and ease the aches and pains of arthritis. Other things that chase away that bone chilling cold feeling are hand spas, wood burning stoves, and the ultimate dream, hot tubs! Anything that really pushes the heat into those bones will make you ache less. The number one rule for winter survival with arthritis, the cozier you are, the better you will feel.
Dressing warm helps protect us from the cold, but what about the ice outside? Every winter 1 million Americans are injured in a winter slip/fall accident. In fact, most of the slip and fall injuries occur at this time of year. Icy conditions can make staying on your feet a challenge. Add any kind of balance or mobility issues, like those often associated with arthritic damage, and it is easy to see why so many people unexpectedly find themselves on the ground in winter. Luckily, there are a few great aids out there to help people stay upright. A nice warm pair of winter boots with an aggressive tread are your first defense against slippery ice. Ice cleats, made to slide over your shoes, are made by a variety of companies and help add traction to everyday shoes and winter boots. A walking stick, especially one equipped with an ice spike tip, can help you stay on your feet by providing an extra point of balance and grip. Last, but certainly not least, Walk Like a Penguin! No, I’m not kidding, those tuxedoed flightless birds certainly have perfected the art of the slow and steady waddle. So, don’t rush, pay attention to where you are putting your feet and waddle away. It might take longer to get where you are going, but the time you save healing broken bones will be well worth it.
Finally, and just as important and staying warm and upright, taking measures to stay as healthy as possible will make winter much more tolerable. It is no secret that most colds and flus spread more quickly in winter. It also happens to be the time of year those with arthritis complain of the most inflammation. There are a few reasons for this, and many ways we can combat this pattern. Winter generally means less time outside in the sun, fewer fresh fruits and veggies, less exercise, and holiday after holiday filled with delicious, inflammatory treats. It’s pretty easy to guess why this is the least healthy time of year in the Northern hemisphere. Vitamin depletion paired with higher germ exposure from being cooped up inside allows winter bugs to spread. Being sure you are getting enough fruits and veggies, adding a multivitamin and a vitamin D supplement can help build your immunity and resistance to those nasty invaders. Protecting yourself from germs by washing hands frequently and even wearing a mask in areas with high potential of germ contact, can help you dodge many of the bugs we pass around in winter. Getting exercise daily will also help you stay healthy and keep arthritic joints mobile. So dig out those exercise videos and move it! Or, better yet, bundle up and go try snowshoeing, cross country skiing or some other low impact winter exercise. The fresh air and sunshine will do you good.
Staying healthy when you have inflammatory arthritis disorders, like RA or PsA, also means watching out for those delicious holiday treats and the endless comfort foods available in winter. Being mindful of what you are eating will make your holidays, and the days between, much more bearable. It is an undeniable fact that sugar causes inflammation, this is true even for completely healthy bodies. In autoimmune bodies, consuming sugar is very much like throwing gasoline on a fire. The result will always be a flare up of that unwanted fiery activity, inflammation. So proceed with caution. Keep in mind that those treats you are reaching for come with pain later, and don’t sign up for more than you can handle. Better yet, offset the fuel you add to the fire with some inflammation busters like turmeric, ginger, cinnamon, green tea, and chaga. These powerful plants and fungi are excellent fire fighters, proven to reduce inflammation. Being mindful of diet and including some helpful inflammation busters will go a long way toward making winter less achy.
With a little extra self-care, a bit of caution, and all the warm things you can get your chilly little paws on, winter doesn’t have to be the season of endless suffering. You might even find some pretty great days. Between storms of course, they’ve yet to make a cure for those weather related symptoms every arthritis sufferer lives with. Until they do, I’ll be spending these stormy days snuggled up with my electric blanket and a big steamy cup of chai green tea, plotting my escape to warmer destinations.
What gets you through winter with arthritis?
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The Road To Disability
When I started this blog, I was already well on my way to a brighter, happier, more mobile place. I’d done a great deal of learning, experimenting and hard work over the last few years. Work that lead me out of the dark and back into a version of me I feel like I can live with. So, I started sharing, first by sharing my diagnosis story. Then jumped into the here and now, because that is where I am. Recently it dawned on me that I skipped the best parts of my story. Not the best as in the times I won, the times I stood back up, but the achingly real time that saw disability claim me. The un-abling if you will. I very conveniently skipped right over that chunk of time as though my story is I had a thing, it got diagnosed, and then I was disabled. That short and sweet version skips over all the meat, all the blood and gore. No surprise I chose to do that, its not a wreck I’m comfortable examining, there are bits of me still trapped in that disaster. But I’ve realized, not sharing is not being truthful. It’s time to give it an honest look. Because this struggle we share isn’t all pushing through and winning. Sometimes it is wallowing in the dark, in a pool of tears. So, here we go, into the dark (don’t worry, I packed a flashlight).
The un-abling began before diagnosis. If you’ve read my diagnosis story, you may have guessed that already. By the time I was properly diagnosed, many parts of me where already well on their way to permanent damage. I had no idea at the time, how those stiff and swollen joints were changing. Had I understood RA better, I may have acted more swiftly. Then again, I am me and I do nothing without turning it over for a month so, perhaps not. It’s so easy looking back to see the times you could have chosen differently if you’d only known, but reality is what reality is. Choices are made, time passes, consequences arrive.
My un-abling came slowly. RA began whittling pieces of my body and my very life away before it was even given a name. Within two months of diagnosis I realized that the job I was working at was far too repetitive for my joints to handle. The symptoms were getting worse by the day, as was my ability to keep up with the demands of said job and raising a family. I knew something had to change. So I took a leave of absence, promising myself that with rest, targeted exercise, and the treatment plan my rheumatologist and I made, I would get better and be able to return to work. I thought that until three days before my leave of absence was over. Then reality hit like a ton of bricks. I was not getting better. In fact, I was worse. The medication wasn’t working, my hands were hardly functioning, I would not be able to return to the job I’d come to love. The funny thing? Until my supervisor called and asked how I would be able to keep up with my job, I still had been telling myself I somehow could do it. His words were a much needed reality check. I remember telling him I don’t know, and the tears began to fall, as I realized the truth, I was no longer a person who could do that job. So I resigned, signed the papers later that same week, and then had a good long cry in my car before making the trek home to my new existence.
For a few years, that’s what I had, an existence. I was here, but not here. Looking back now, I realize that losing the ability to work sunk me into a rather deep depression. Ability was such a huge part of how I saw myself, to lose it was devastating. I was the kind of person who never thought twice about tackling hard work. The kind of person who often made her own solution with Yankee ingenuity and a little muscle power. And here I was, unable to open a bottle of water. I was lost, I was broken, I was permeated by a deep sadness, and I was SO mad! Mad at the doctors who misdiagnosed me for decades, mad at the medicine that made me feel worse instead of better, mad at the body that had for some reason decided we were enemies, mad at that water bottle I could not open. For years.
So, I punished myself. Unable to do whatever I wanted, I chose instead to do nothing I wanted. Frustrated by the things I could not do, I slowly stopped doing everything. Part of me was certain I deserved this, earned it, that it was something I had done to myself. Unfortunately, the internet tended to agree. It promised if only I took better care of me, I wouldn’t be where I am. Something that alternatively spawned hope and despair in me. Hope for healing, despair for my inability to do enough to make that happen. I was failing my biggest test. I hated myself for it.
Eventually, all that despair and hatred started to show. Rock bottom was approaching. It would arrive shortly after I was approved for disability. Never has a win felt so much like a loss. Never has relief brought with it such deep, dark grief. Disability meant help in the form of income and health insurance, both of which I desperately needed to fight RA. Unfortunately, being swiftly, without any fight, approved for disability, also meant I really was disabled. The words total and permanent leapt off the page. The system had spoken, recovery was no longer expected for me. Reality was devastating.
I soon began to shrink as my depression continued to grow. Before I found my way out of the dark I would weigh a terrifying 89lbs. A skeletal version of my former self, my outsides now matched my insides, shrunken and hollow. At the time, the weight-loss was a mystery. I had no idea why it had started, even less of a clue how to stop it. The overwhelming hopeless voice that had taken over my psyche was certain I was dying. I will be ever thankful for that thought, whispered in the dark. For finally there was something else blooming in the darkness. Fear. And what does fear do when it awakens in the darkness facing an overwhelming foe? Fear wakes Hope. Needing an ally, it triggers that ever present will to live. Fear rings the alarm and Hope springs into action. Glorious, radiant Hope.
Still broken and battered, I began once again to care, to believe that I had the power to change this destiny. I decided that I wanted this broken life, and started building a ladder to get out of the pit I found myself in. I’d love to say I immediately started gaining weight and feeling better, but that is not how the story goes. It would take many months to begin to see positive changes. At first, I continued to lose. I see now what a blessing that was. How that time allowed Fear to settle in and really give Hope a much needed kick in the ass. How much I needed to fear losing my life to find the will to fight for it. And find the will I did. Slowly but surely, I began to turn things around. I gained weight, strength, and belief in myself. The stronger I got, the more hope there was. As the number on the scale reached a safe zone, I turned my rediscovered will to fight to other things. I began looking for ways to heal again. I finally remembered who I really was. Glass ½ full, anything is possible, question it all, try anything once, never give up, Tenacious, ME.
Do you struggle with depression? You are not alone. Please reach out, seek help and companionship. Together we can light the darkness. For help and understanding call the National SAMHSA Helpline 1-800-662-4357 or the Suicide Prevention Lifeline 1-800-273-8255 .
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What lifts you up?
Life, especially life with a chronic autoimmune disease, comes with bad days. Days when all the stress, troubles and pain life hands out feel a little too heavy. What do you do to unfunk when you feel down in the dumps? For me the answer is always music. I listen to a pretty wide range of musicians, from classical to metal, but when it comes to lifting my spirits? No one lifts me up quite as quickly, or leaves me feeling quite as blissful as soul rocker Michael Franti.
What music lifts you up?
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Accepting the unacceptable- when it is okay to refuse to make lemonade
I’m not feeling entirely tenacious this week. Sure, the fighting spirit is still there, she always is, but she’s taking a backseat. Allowing me to process the news this week’s long awaited hand specialist appointment revealed. News parts of me knew but were unwilling to accept. News parts of me are still not willing to accept despite having seen it in the black and gray of x rays that make reality fairly hard to ignore. Despite having scoured the internet for a better prognosis than I have now been handed.
Tenacity has taken a step back to allow for vulnerability. As much as she protects me with her fierce can-do attitude, at times it is important to wallow, just for a moment. To refuse to make the lemons life has thrown into lemonade. To be broken, to grieve the loss of my former self.
Time for anger, sorrow, and the deep, dark grief that accompanies letting go of dreams long harbored. Dreams of an able body, a healed body. For although I have been disabled for years now, the truth is, tenacious me has never accepted that. It’s been a temporary setback.
Always I have carried on with the belief that once my symptoms were controlled, I would regain my former strength and ability to get things done and return to the active life of a tenacious problem solver.
That one day I would work in aquaculture once again. That days spent hunched over a microscope, in a lab, solving mysteries and wonders were not only my past but also my future. That crafting and creating would again allow me freedom and solace more often than frustration with my limits.
Then reality hits like a semi, leaving me dreadfully broken and distraught on the side of the highway. There is no saving my hands. The words rip through my mind, tearing holes in my soul each time they repeat. There is no saving my hands. It is a harsh and heartbreaking reality. One I maybe should have been prepared for. After all, I see and use them everyday. I know how they have changed. How limited their movement, how weak their grasp, how they struggle with anything requiring a bit of dexterity.
I guess I never really thought that those changes would be permanent, least not so soon. I imagined a world where those things could be fixed. Having seen so many astoundingly miraculous medical treatments, I assumed rebuilding hands was a reality. How wrong I was. How heartrendingly wrong.
For in the age of titanium bones and robotic limbs, it seems impossible that anything is beyond fixing. And yet, here I am, being offered wrists that will never bend and fingers that will never again straighten. A choice between pain and mobility. Between suffering and usefulness. What a choice to make.
I’ve no idea which to choose, neither option gives me back the use of my clever, strong hands. It’s like I’ve been offered cat poop or feathers for dinner for the rest of my life, to be honest part of me would rather starve. Most of me is hoping there is a crumb of bread hidden out there somewhere because I can’t live on either forever.
Hopefully I won’t have to. Tenacious me waits in the wings, ready to enlist the help of bakers and fixers. To challenge the doers of the world to step up and do better. Tenacious me insists the answers we’ve been given are not enough and therefore, asks for more. She is looking for sugar for that lemonade. Fearless and confident in the ability of humans to solve even the most complex problems, tenacious me is certain that even this prognosis, is temporary. That in time, the answers we seek will come. That somewhere, there is a clever mind with the key to our bright future. Maybe it’s you.
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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?
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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.
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?
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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!)
Tenacious ME 