As the panic spreads, with an infection rate 1000 times that of COVID 19, two things have become increasingly clear. One the average American is not prepared for a minor emergency that might leave them shut in and/or out of work for two weeks. Two, when asked to prepare for two weeks at home, many don’t even know what to get to prepare for such an event. As a New Englander, both of those facts baffle me. Growing up in the rural North, I can’t imagine not being ready for an emergency like this. With severe winter weather that sometimes lasts for weeks and power outages that have stretched as far as 3 or 4 weeks in some cases ( Ice Storm 1999), we are used to the idea that our stores might not be open or accessible any given morning. We know that power is not a given, nor is access to the outside world. Sometimes it dumps so much snow or ice you are stuck where you are. It leads to a social climate of resilient preparedness.
So, imagine my surprise when, even here in New England, the order to prepare for 2 weeks to 30 days at home resulted in wiping out of “essentials” nearly overnight. Surprise that quickly turned to amusement when I noticed they are not stocking up on bread, milk, canned goods, vitamins, or any of the things they may really need to SURVIVE if forced to stay at home, nope, their only real concern seems to be how they will wipe their bum! There is not a single roll of toilet paper to be had online or in stores. Not one. A fact which alarms some members of my household as we are down to two rolls. Looks like we may need to use backup bum cleaning methods. Luckily, those new England preparedness skills came along with a lot of knowledge about getting things done, old school. So, while the rest of the nation squabbles over the next shipment of toilet paper, we have focused on the things we know we really need if we are going to be stuck here for a while.
1.) Water- One item I was shocked to see hasn’t flown off the shelves is bottled water. Hands down the most essential item for staying alive, you cannot go more than 3 days without water. If you have potable tap water, you are likely all set, if not, water should be on the top of your list no matter the emergency. If you live in an area with frequent power outages, filling jugs and containers with water should be part of your standard emergency prep.
2.) Food- The next most essential item for surviving a potential emergency is going to be shelf stable food. Canned goods, dry goods like rice and pasta, and frozen goods should be on your list of things to have on hand. In this case, where its not a winter outage but a germ you are battling in your confinement, I recommend stocking up on healthy foods most of all. Fruits, vegetables, and good proteins should be at the top of your list. They will keep you not only fed but nourished and ready to do battle with germs.
3) Medications- The medications you need vary based on your health. It is always a good idea to have a few weeks’ worth of any essential medication on hand, especially during times of the year when emergencies are likely to strike. That blizzard or tornado might interfere with your ability to replenish them. You will also, in this case, want to have whatever you use to treat a cough on hand, as that is the primary symptom of COVID 19. You won’t need decongestants and antihistamines, both of which are mysteriously selling out nearly as fast as toilet paper. You will want an expectorant. This is also a good time to check your stock of first aid supplies, as accidents still happen, even when we are quarantined at home.
4) Vitamins- Not as essential to survival perhaps as the first three, I was tempted to put this at the top of the list, because, though not necessarily always 100% essential for survival, vitamins can and will help you avoid and/or fight this nasty little bug. A healthy immune system is your first defense against infection as well as your ultimate ally in battle should you become infected. Vitamin C, D, B Complex, Zinc, Selenium all help your immune system to fight off colds and flus. Stock up, but more importantly, start taking these vitamins daily to fortify yourself.
5.) Disinfectants- To prevent the spread of germs and protect yourself and other healthy members of your household in case someone becomes sick, it is important to have household disinfectants on hand. No need for an industrial sized bottle of bleach, a diluted bleach solution will effectively kill all of the germs in question.
6.) Personal hygiene items- Yes, this includes toilet paper! Notice how it is not at the top of the list? There is a good reason for that. Other than soap and water, few of the items in this category are actually “essentials”. Most have simple alternative options that, while maybe a bit more gross and certainly more work, are doable in a pinch. Wash clothes and rags can be bum wipes if necessary. They are also a substitute for feminine hygiene products and can be fashioned into a diaper in a pinch. In a perfect word, you could easily stockpile enough toilet paper and diapers for two weeks, at the moment, you may need to be a bit more creative.
7.) Entertainment- While certainly not necessary for staying alive, stockpiling whatever keeps you entertained may help to preserve your sanity if you are stuck at home for a few weeks. Being entertained will also help reduce your stress about being stuck at home, missing work, getting sick, whatever this has you worrying about. Stress has been proven to impact our health and ability to fight off sickness. Books, puzzles, games, projects, movies, whatever it is that you do when you have downtime, gather it. Nothing makes a week stretch longer than boredom, be prepared with a stockpile of distracting boredom busters.
Gathering the things on this list will help you be more comfortable and increase the chances that you get through a quarantine with your health and sanity intact. Food, water, and medications are by far the most important things on the list, followed by disinfectants. Hopefully the current pandemic pandemonium has taught us to be more prepared in the future. It has certainly reminded us that we need to be.
Here we are, almost ¼ of the way through the new year already! How are those New Year’s resolutions going? If you are like most people, they are all but forgotten. In fact, studies show that approximately 80% of resolutions set at the new year will be abandoned by the end of February. If you’re one of the 80%, I invite you to dust off that goal and try again. After all, you did want to make that life altering change just two and a half short months ago. Chances are its still something that would be beneficial. The trick is, figuring out how to make it a change that will stick. With a little bit of information about human nature and an examination of that goal and why you abandoned it, it is not too late to rekindle that goal and make it a reality in 2020, after all, there is still ¾ of a year left to get it done. Let’s dig into why it failed first.
The most likely reason for failing a resolution is, it was too big or too vague. When we set an intention to do something, like lose weight for example, we fail to realize that is not actually a goal. Goals need specifics. How much do you want to lose? When do you want to lose that weight by? How are you going to get there? When the goal is an arbitrary “I want to lose weight” statement, you set yourself up to fail. First and foremost because there is no defined goal. How will you know when you’ve hit it?
Redefine that goal. Be specific. Set a deadline. Include how you plan to get there as well as why you want to get there in the goal. For example, fixing that I want to loose weight goal might look something like this; “I want to lose 15 pounds by June 1st, by eating right and exercising because I want to fit in that gorgeous cocktail dress in my closet.” Now, that is a goal, it is defined, specific, measurable, and achievable. You have mapped out not only specifically what you want and when you want it, but how you intend to get there. That is a formula for success.
Once you have redefined the goal, with that measurable outcome in mind, the next step for setting up for success is going to be taking a look at what has gone wrong when trying to tackle it before. Chances are, this isn’t your first time trying to break that bad habit or set those healthy behaviors. You’ve likely tried and failed several times before. That is a good thing, it can help you figure out what is derailing the efforts to change. So, take a little time to think back to your last attempt at changing this, what went wrong? What went right? Once you know what is likely to hold you back, you can make a plan to avoid it. With what works for you and was doesn’t in mind, you can fine tune that goal a bit more, making it even more specific.
Now that you have thought a bit about what has and hasn’t worked in the past, it’s time to break that goal and plan down even further. Set some mini goals (checkpoints) based on the larger goal. Break that weight loss down, set a date to have gotten partway to that goal. Reward yourself and be proud when you get there, it might not be the total change you promised yourself but it’s a sign you are on the road to change, be proud, celebrate how far you have come. If you get to that checkpoint and find you have not met the set goal, take some time to think about why you have not been able to get it done. Was the goal realistic? Did you follow through with your plan? What caused you to go off track and miss the checkpoint? Recalculating the course at this point will help you reach that final goal.
A word about rewards. Be careful about what you choose to reward yourself with. If the reward for weeks of clean eating is a big ole slice of cake, your reward is negating your goal. By calling cake a reward, you are sending the clear signal to your brain that clean eating is not what you want, cake is! That kind of thinking will not help you set the healthy new habit you are working on. Rewards should be directly related to goals, even better if they are something you can only do because you’ve been killing it hitting that goal.
A cute new dress when you hit that weight loss milestone, a handy kitchen gadget to make prepping those healthy meals more fun, a trip using the money you’ve saved by giving up that expensive smoking habit. When my stepfather quit smoking, he saved what he’d spend on cigarettes each week, and used it to purchase a truck. Talk about a reward! Be sure the rewards you choose support the goals you have set. You can still have that piece of cake now and then, just remember, it’s a TREAT, not a reward!
So, you’ve got a specific, measurable goal, you’ve thought about how to get there, what gets in the way, and how to reward yourself when you do, you’ve set smaller checkpoint goals to keep you focused and motivated, to help you appreciate your progress. You are ready to tackle that resolution again. Start today. Your healthy new habit is waiting.
“Do you need a glass of water Mom?” The question, from my youngest son is no surprise, he’s a very kind little man. His response to my answer of no, however, does take me a bit by surprise. “You never need me to get you stuff anymore.” It’s not just the statement of fact but the clear disappointment in his voice that strikes me. This amazing human I’m raising misses helping me. He misses getting my drinks when I could not carry them, he misses helping me open things. He’s grown up helping out and feels the loss of my need for assistance. Sometimes it’s the simplest of conversations that shift our perspective isn’t it?
For years I have wrestled with the kind of parent I have been to my boys. Not because of any major failings, mind you. Both of my boys have had the constant love and support of a Mom who believes in them, that has never changed. No, my internal battle has been over the things their Mom could do, and even more so, the things she could not. Because they are 7 years apart and rheumatoid arthritis became severe a few years after the birth of my second son, it has often felt to me like my boys have two different Moms.
My oldest grew up with an active Mom, she got down on the floor to read and play, ran in the backyard, hiked the beaches and trails with him. Life was an active adventure filled with shell hunting, kite flying, and long walks. An only child for the first seven years of his life, he tagged along to study sessions and often joined me in the field to collect data for some college project. His Mom was always moving, always doing, working, studying, driven. While she did have RA (though she was years from knowing) and there were some bad days, some aches and pains, she was still pushing through. When he was two the doctor told her to stop stooping and kneeling and she laughed at him, knowing she couldn’t do that, so she changed the way she got down on the floor, stopped taking the stairs and saved her knees for playtime with him. He never knew when she hurt, she never needed him to help. By the time RA really reared its ugly head, he was a teen, already well-formed, with a decade or so of active Mom memories to carry with him.
My youngest has no memory of that Mom. He never really got to see that side of me, not that he would recall. There are pictures of us, camping, hiking, playing on the beach, but he was too young to remember those days. The truth is those pictures were taken on the good days. By the time my second son was born, my body was already starting to cave on me. I remember nursing him as every joint in my arm cried out. By the time he was a toddler, the knees that had been troubling me since my teens hurt most of the time. They no longer tolerated squatting, stairs and hills made them scream. Getting down on the floor to play or read together was rare. His younger years are filled with adventures that were followed by days of Mom recovering, barely able to move, exhausted and in pain. As he grew, those days of adventure shrank, and the bad days began to outnumber the good. By the time he was five, his Mom was disabled, depressed, terribly sick, and always in need of help. That’s the Mom he knows best. The Mom who needed him to help her get a drink. The Mom who turned every household chore into a team sport, doing the parts she could and getting help with the parts she couldn’t. The Mom who struggled to get through the days. It’s weighed heavily on my mind, that shift from adventure to precaution, from giving to taking, from living to existing. I’ve spent many nights worrying about all the things I didn’t do with him, all the adventures we haven’t taken, how much I rely on them and their Dad to get through the bad days (months and years).
I was so busy worrying about how my deteriorating health burdened them, I didn’t really notice how it blessed them. He misses me needing him to get me a drink. How sweet is that? That needy Mom, she raised helpers. She raised thoughtful, attentive, gentlemen who open doors and help when they see someone in need. Compassionate humans who can cook, clean and care for themselves, who have seen firsthand how big of a role self-care plays in health and healing. That Mom needed her family in a way many Moms never allow themselves to, and her family grew stronger for it. Closer, more cooperative, more empathetic and understanding.
Now, here we are, on the other side of my roughest years together. With symptoms (finally) fairly well managed, some of the damage cleared up, and consistent self-care and physical therapy, my ability to do has grown and the good days now outnumber the bad. My oldest is grown and out in the world, with a solid foundation of love, support and life-skills behind him. My youngest, soon to be twelve, is at home with me. Our days are filled with homeschooling, housework, laughter and sharing. Soon, it will be spring, and we can head outside for new adventures. I can’t wait for my youngest to get to know the new/old me. The healing me, the adventurous (with a bit of planning 😉 ) me, capable me, tenacious ME. There are woods to explore, beaches to comb, and kites to fly. We’ve so much to do and see, but when we get home, I’ll definitely let him get me that glass of water.
Has life with autoimmune disease impacted your parenting style? Share your story in the comments.
Swollen joints, stiff fingers, a dull throbbing ache, if this describes your hands you are one of the millions of Americans living with arthritic hand pain. You are not alone, according to Reuters an estimated 40% of people will experience arthritis in their hands at some point in their life. While the level of pain experienced by sufferers varies depending on the level and type of damage, most will experience some level of pain associated with their arthritis. Ranging from a dull throbbing ache to sharp and insistent, hand pain can drastically impact your ability to do many everyday tasks, from dressing and grooming to typing and physical labor. Finding remedies to soothe arthritis pain may improve not only the outlook of sufferers but also their ability to perform everyday tasks. The following 11 remedies are proven to help soothe cranky hands.
1. A hot beverage- A great way to start soothing that morning pain and stiffness is by wrapping your hands around your favorite hot beverage. Coffee, tea, hot cocoa, it doesn’t really matter what you choose to put in the cup as long as it’s warm and toasty. Wrap your hands around that mug and let the heat seep in and soothe your aching joints. For double joint soothing action, fill that mug with green tea, a proven anti-inflammatory.
2. Hand spa- Available in a variety of shapes and sizes, a paraffin (aka wax) hand spa is a great thing to have. Dip hands in warm wax and then wrap in a plastic bag for the maximum benefit. Adding soothing peppermint oil is a great way to increase the pain-relieving power of this toasty remedy.
3. Ease Muscle and Joint Oil- Hands down my favorite topical pain reliever, this powerful herbal remedy from Sage Moon Apothecary smells as good as it works! If you are sick of mentholated and medicated smelling creams, this is for you. Pop over to her shop and check it out, you will not be disappointed.
4. Hot water- Soaking your hands in hot water with Epsom salt is a great way to soothe the aches while getting some magnesium, an essential mineral for bone health. Washing dishes is also a great way to ease the aches and loosen up those stiff joints. Just save the heavy stuff for after you’ve loosened up, or even better, get someone else to handle the heavy lifting when your hands are cranky.
5. Movement- Not the most popular answer but certainly a fact, movement helps to ease arthritis pain. Studies have proven that moving decreases inflammation, improves blood flow, and releases gasses that build up in joints. This can go a long way toward easing arthritis pain. Low impact targeted stretching and exercise is also an essential part of slowing many types of arthritic damage.
6. Triflora arthritis gel- This topical remedy uses plant power to relieve arthritis symptoms. It reduces swelling from inflammation and eliminates stiffness. With poison ivy as one of the primary ingredients, it is recommended that it be tested on a small patch of skin before applying to a large area. Some people are very sensitive to poison ivy and will not be able to use this one. (I was pleasantly surprised to find my generally sensitive skin had no reaction.)
7. Cannabis- Best known for its ability to increase appetite and prevent seizures, cannabis is also a wonderful remedy for pain and inflammation. Whether taken internally as an edible or tincture, or used topically as an oil or cream, the pain relief benefits of cannabis are excellent. If you are lucky enough to live somewhere that it is legal, ask your medical professional or a cannabis caregiver for information on using cannabis for pain relief.
8. Occupational or physical therapy should be part of the plan of care for anyone suffering with arthritis. Trained physicians can teach patients how to change the way they do everyday things to protect affected joints. They can also prescribe targeted exercises to strengthen joints, improve mobility, and increase flexibility. Using a variety of tools and techniques, and a great working knowledge of the mechanics of the human body, a competent physical therapist can greatly reduce arthritis pain and increase patient quality of life. Ask your doctor for referral for physical therapy.
9. Massage- Massage is a great way to relieve many types of pain. Not surprising, it can be helpful in relieving arthritis pain too. While it will not stop joint pain itself, it can help to soothe muscles and tendons that are sore because of the pressure caused by inflamed joints. Massage can release the strain and stress arthritis creates. It can help to both reduce pain and increase mobility.
10. Anti-inflammatory medications- There are many over the counter anti-inflammatory medications on the market. Aleve, ibuprofen, and Naproxen all work to reduce inflammation and relieve pain. Ask your doctor which of these remedies is most appropriate for you on your current medications.
11. Anti-inflammatory herbs and supplements- Many herbs, supplements and foods have been shown to help reduce inflammation. Turmeric, green tea, cherries, pineapple, and blueberries are just a few of the many plant-based options for fighting inflammation. Also available, are a variety of traditional Ayurvedic herbal remedies for inflammation such as Boswellia and Ashwagandha. Determining which of these foods or plants will work for you takes a bit of trial and error. The experience of a well-educated herbalist or nutritionist can be very helpful in determining which remedies might be best for you. Keep in mind, that even though these treatments are natural, drug interactions can occur when using herbal or food remedies. It is always a good idea to talk with your doctor before making changes in the things you’re putting into your body.
Arthritic hands might be an unavoidable part of life for many of us, nearly half in fact, but it doesn’t have to rule our worlds. Using a variety of medical and natural remedies, you can enjoy increased mobility and reduced pain. What do you use to soothe aching joints when arthritis pain rears its ugly head?
Are you sure its okay for you to travel with the Corona Virus outbreak? The question, asked by a loved one, should not irritate me so, yet, it does. See, the problem isn’t the question. It’s the fact that this is the fifth person to ask me this question about my upcoming cruise vacation. To be completely honest, until my husband (concerned loved on number one) asked me, I hadn’t even considered it. Am I worried about corona virus? Sure, I guess so, it’s a virus, I avoid all of those like the plague they are.
As someone who’s been on immune suppressing medications for a few years now, I’ve more than a few tricks up my sleeve for avoiding germs, viral and bacterial. Am I specifically going to be on guard for corona virus on vacation? Nope, I won’t even be thinking about it. Why? Three really good reasons, first, I already do all of the things to avoid germs. Second, I am not traveling to or near any of the areas the CDC is recommending caution in. Third, I believe in the law of attraction, the secret, the old adage that states “be careful what you wish for”. So, no, I won’t be worried about corona virus while vacationing, I’ll be far too busy enjoying the moments as they come. Before you (or any of my loved ones reading this) freak out and tell me I am taking too big a risk, let me reassure you, that does not mean I will be going on vacation unprotected from all the flus, colds, and infections floating around out there.
The fact is, despite the media attention it has gotten, corona virus is no more dangerous to someone like me than the common cold. Any bacterial or viral infection can get out of hand when you are on immune suppressing medications. Biologics and DMARDs, while helpful for control of many autoimmune diseases, leave patients vulnerable to a host of issues, as immune function is intentionally suppressed. Great for reducing the attack on our own bodies, equally great at reducing our ability to fight infections. It’s one of those double-edged swords they speak of. Helpful in the battle, but it might cut you on the back swing.
So, what’s a girl with a double-edged sword on board that might let the bugs in to do? My well-intentioned husband’s suggestion to ditch the sword (stop medication for my trip) might seem like the logical solution. I’ll admit, I considered it. The reality is, every single one of those medications takes time to build up to an effective level in your system. They take just as long to stop being effective. Stopping medication before vacation, might slightly increase my body’s ability to stop incoming germs. It will definitely increase my disease activity and symptoms. So, the choices are continue meds and maybe get sick, or stop them, definitely feel terrible and possibly do more long term damage. When offered the choice between a for sure bad time and a good time with maybe a little risk involved, I’m going to roll those dice every time. What can I say, I’m a gambler at heart. After all nothing ventured, nothing gained, right?
I’m also very cautious by nature. If I’m rolling the dice, you can bet your ass I’ve assessed the risks. So, while I hadn’t considered corona virus specifically before my husband asked about it, I had already spent a lot of time planning my strategy to avoid vacation germs, because the world is full of bugs, and I am not planning to bring any of them home with me. Over the years, I’ve developed a few good germ avoidance habits. I’ll be using those, plus a few brilliant suggestions I got from fellow RA Warriors after the conversation with hubby, to stay germ free.
1. Wash, wash , wash your hands– If you sang that line, congrats on remembering the age old preschool and kindergarten song. There is a reason we spend so much time and energy teaching kids good hand washing habits. The first line of defense against most of the germs in our world is washing your hands, especially before touching your food or face. I really cannot stress this one enough. If you cannot wash them, use hand sanitizer. Available in a variety of travel sized options, there is no reason you can’t always have hand sanitizer with you.
2. Hands off– Seriously, if you don’t have to touch it, don’t. Many germs can survive for a long time on surfaces, not touching them is clearly a great way to avoid them. Especially avoid touching handrails, countertops, and other areas that many people touch. This goes double for anything small kids are likely to be all over. Nothing spreads germs like the touch and taste it all curiosity of small children. Unless you brought them with you, avoid kids like they carry the plague.
If you must touch something, get creative. I’ve mastered pushing elevator door buttons with my elbow, using a forearm and one foot to open a door, you’d be surprised what you can do without using your hands. Get creative, if you can’t find a creative solution, sanitize your hands afterward.
3. Wear a mask– I know, you don’t want to look like a weirdo, I get it. But you also don’t want what the person hacking behind you on that 3-hour flight has, so mask up! Wearing a mask in areas where you will be sharing space and air with many strangers is a great defense against catching whatever they brought on board. There are thousands of options out there, find a reusable mask in a pattern that speaks to you and wear that thing with pride.
4. Use essential oils– This might sound a bit odd if you don’t have any experience with essential oils, but essential oils can create a good barrier to germs. There are many oils that are antibacterial, antifungal, and even antiviral. Some of those, are also great at defending against airborne microbes. Many blends are available on the market to help ward off sickness, Thieves’ oil, used by doctors in the 1400’s to avoid the bubonic plague is perhaps the oldest and best known of these blends. Using a blend like thieves’ oil, or on guard (my barrier oil of choice) in combination with a mask is a great defense against airborne germs.
5. Fortify yourself– No, I’m not suggesting you construct a portable fort or don a suit of armor. I do think you should go into the world well protected from the dangers. Being sure you are properly nourished can go a long way when it comes to preventing colds and flus. Don’t use immune boosting supplements like Emergen-C or Airborne, they cause immune system overstimulation in autoimmune patients.
DO be sure you are getting plenty of Vitamins D, C, B6, Magnesium, and Zinc. These are all essential for proper immune system function and defending against colds, flus and infections. All but Vitamin C have also been identified as beneficial to patients with inflammatory disorders, as they are vital to proper inflammatory regulation. Eat a well-balanced diet, if you suspect you have nutrition gaps, check with your doctor and consider adding a supplement to your routine. Being sure your immune system has all the nutrients it needs to ward off infection is a good way to stay healthy, no matter what is going around.
A word about herbs- When it comes to herbs and autoimmune disease, all I can really say is, it’s complicated. There are many wonderfully helpful herbs that I use to treat and manage various symptoms, including many ra symptoms. But, when it comes to herbs for immune boosting, most of them essentially do the job too well. Neither echinacea nor elderberry, the two best known herbs for warding off cold and flu germs, are recommending for those with autoimmune conditions. Thyme has been recommended as an herb with antimicrobial properties, that does not overstimulate the immune system. An experienced herbalist, who works with people with autoimmune diseases, should be consulted if you are interested in using herbs for cold and flu prevention.
6. Sanitize your spaces– Sanitizing wipes are a great item to toss in your carry-on bag. Use them to wipe down anything you must touch like airplane arm rests and tray tables. Hit up all the surfaces in your home away from home, whether that’s a hotel room, Airbnb, or any other vacation rental. Avoid whatever the last guests may have left behind. A tip straight from the RA group poll, grab a can of Lysol to spray bedding, furniture and other soft objects in your hotel room or cabin. You’re going to want a sanctuary where you can let your guard down a bit.
7. Get plenty of rest– Somewhat easier said than done when on vacation, so much to see, so little time. Getting good rest is still an important part of staying healthy. Build some down time into the itinerary. Want to catch that midnight show? Plan a nap in the afternoon so you can enjoy late nights without losing sleep. Try to get plenty of sleep leading up to the trip, so you are well-rested at the start.
8. Drink plenty of water– This one feels like it goes without saying, but I’m going to say it anyway, drink water, every day, plenty of it, zero excuses. Essential for all aspects of our health, water is key to preventing colds and flus as well. It keeps our bodies hydrated, cells functioning well, and systems cleaned out. Speaking of cleaned out systems though, do beware what kind of water you drink. There are thousands of water born microbes in the world, especially in warmer vacation destinations. Avoid tap water and stick to the bottle, just to be on the safe side.
Staying germ free while on vacation may take a bit of preparation and a few extra precautions, but they will all be worth it when you return home bursting with memories and free from hitchhiking germs. Go prepared to enjoy a sickness free vacation. For those of you still worried about Coronavirus specifically, I did check the CDC recommendations for avoiding this particular plague, every precaution was already on the list.
What do you do to avoid getting sick on vacation? Is there something missing from the list? Drop your best tips in the comments. If you found this article helpful, hit that like button!
One of the most frequent troubles Rheumatoid Arthritis (RA) patients struggle with is being understood. If you don’t have RA, it is a little hard to imagine what it is like. The morning stiffness that sometimes sticks around all day. The painful swollen joints, the deep fatigue, the stress of finding treatments that work and the load of side effects that often come along with treatment, make for a complex life. A life that is often also lonely as mobility becomes a challenge. Loneliness that is even deeper when friends and loved ones do not understand what they are dealing with. We polled hundreds of rheumatoid arthritis patients to find out what they wish their loved ones understood about RA. Here are a few things your loved one with Rheumatoid Arthritis wants you to know.
A common misconception due to the name and a general lack of knowledge about the disease, Rheumatoid Arthritis is much more than arthritis. While stiff joints, joint pain, and joint deformities are indeed a big part of how RA shows its teeth, that is far from the only area this autoimmune disease impacts.
RA is a systemic disease; this means that it attacks the entire body. Heart and lung tissue, tendons, eyes, vocal cords and muscles are also on the possible hit list for RA. It brings with it increased risk of cardiovascular disease, lung disease, various forms of cancer, wasting sickness, blindness and so much more. Unchecked, Rheumatoid Arthritis is deadly.
Managed, it is still chronic. The most common and persistent symptoms of disease activity are pain, stiffness, fatigue, depression, and brain fog.
Fighting a chronic, debilitating disease like RA can sometimes feel like a full-time job. Medical appointments, treatments, diet and exercise regimens to keep the disease in check often dominate the lives of patients. Because even among professionals, there is a great deal of misunderstanding about the scope of the disease, patients often have to fight for the medical care they need. Successful management takes a team of professionals including rheumatologists, orthopedic doctors, physical therapists, massage therapists, psychiatrists, and various other sorts of doctors when heart, lung, eyes etc. become impacted.
Medical treatments involve medications that shut down various immune reactions, leaving patients vulnerable to a host of issues. (If your loved one with RA cringes when someone in the room sneezes, this is why!) Frequent battles with infections and microbes are par for the course.
The possible list of side effects on these medications include increased risk of cancer, nerve damage, liver failure, kidney failure, hair loss, fatigue, blood sugar abnormalities and even destruction of bones. Treating the disease often feels as dangerous as letting it do what it will. Patients are forced to choose which side effects and symptoms they can live with, and to hope none of the ones they ignore kill them in the end.
There is no one treatment that works for all. It is all a process of trial and error. Unlike many of the symptoms humans commonly face, there is nothing that eliminates symptoms for everyone. Every body responds differently to treatment. It quickly starts to feel like a game of medical roulette, will this help, or will it destroy a vital organ? Only time and trial will tell.
There is no one treatment that works for all.
This medical mystery and frustration is doubled when faced with those who, with the best of intentions, fill them with false promises of miracle cures. The fact is,
Knowing all the dangers associated with active RA, you’ve likely poked around online, talked to friends, maybe even health professionals, about how your loved one could feel better and be safer. Probably more than a few have suggested diet, exercise, herbs, various medications and supplements, all with promises to cure Rheumatoid Arthritis.
Something that you really need to understand and come to terms with is THERE IS NO CURE. This disease is chronic, it is not going anywhere. While it is true that many of the recommendations will make life with Rheumatoid Arthritis and disease management easier (If you consider restrictive diets and piles of supplements easy), none of those things will ever cure RA.
Once it is activated, there is no stopping it. The best any medical treatment or natural approach is likely to do is slow it down. In a small percentage of patients, times of “remission” may occur. Some are even able to stop medications and continue to be in remission. These cases are few and far between, and so far, none have lasted. RA always flares up eventually. Even on the most restrictive diets. Even when you do yoga daily. Even on medications with terrifying side effects.
So, while they appreciate that you want to help them feel better, please keep that miracle cure to yourself. They have heard it all before, they have probably tried it all. They are doing their best to manage their disease. What they need from you is understanding and support, leave the miracle cures to strangers on the internet. Trust me, they will get that little tidbit somewhere, and they won’t be annoyed with you for suggesting kale can cure RA.
Probably most important thing for you to know is that they are still the same person they were before RA came calling. They have the same dreams and desires, love the same activities, and truly want to live the life they lived before diagnosis. Sadly, quite often that life quickly becomes out of reach as managing RA and all the physical challenges it brings, forces them to change their lives.
They don’t have the same stamina, the pain wears them out, their bodies don’t function like they used to. Its more than pain, its debilitating muscle weakness, exhaustion, and remodeling joints. Whenever you feel annoyed that your bestie just can’t now, imagine how badly she feels about that.
Imagine you woke up tomorrow barely able to shower and dress yourself. Still think they need to just suck it up and go out with you anyway? Imagine you also woke up to find out you’d been injured by a hit and run driver in the night. That is life with Rheumatoid Arthritis.
Perhaps the most challenging aspect of managing autoimmune diseases like RA is the way symptoms can change so much from one day to the next, or one end of the day to the other. Pain and inflammation flares and calms in sometimes completely unpredictable cycles. A knee that works perfectly in the morning may be stiff and useless by afternoon.
To an outsider, not living in a body that can now and truly can’t later, it is hard to imagine why rheumatoid patients cancel plans when they do. Yesterday you saw them at the gym, and they were fine, it is easy to understand why you find their claims that they can’t walk today suspect. But this is the reality of life with RA.
When they say they can’t, they mean it. Believe them and try to be sympathetic. They wanted to join you, they really did plan to enjoy that day out, but they are not in control of when they can and when they can’t. They live their lives at the mercy of unpredictable bodies.
The fact is, cancelling plans disappoints them more than it disappoints you. They do it all the time and its never because they don’t want to leave the house. They have cancelled dinners, dates, shopping plans, medical appointments, days of work, showers, projects they wanted to do. The list of times they have felt the guilt of cancelling because they woke up in a flare are endless. It makes them feel weak and useless. They never feel as though they are in control. It is unimaginably frustrating. Let them know you understand their frustration, be disappointed alongside them, not disappointed in them. They have the self-disappointment covered.
It is hard to imagine life with RA unless you’ve lived it. A systemic disease, it impacts every aspect of life. Unlike the more common Osteoarthritis that comes with wear and tear as we age, RA can impact even the least used joints in the body. Joints you don’t even probably realize are joints.
It does so in a very chaotic manner. There is no real rhyme or reason to what it hits and when it hits. Inflammation can pop up at any time, leaving joints swollen, hot to the touch, stiff, and painful. Anywhere in the body. From jaw hinges to the tiniest of toe joints, any body part can suddenly become useless and painful to attempt to move. This causes every aspect of life to become a challenge.
From brushing your teeth to walking out the door each day, you move a surprising number of joints. Imagine if each of them felt as though they were welded shut. If you’d like to see what that is like, take a long rope, wrap it around your dominant hand so it cannot open all the way, now, wrap it around your elbow, then secure it to your waist. Be sure not to leave enough slack to raise your arm. Now, go ahead and get washed and dressed. Did I mention that you also cannot reach your feet today? Hope you have slide on shoes and don’t mind going without socks, otherwise you better leave 30 minutes to figure out how to get those feet dressed. If you had RA, all those restrictions would also be punctuated by pain.
Since we are getting dressed, let’s take a look in that closet for a minute. Remove every item with buttons or snaps. Hands ravaged by RA, the number one symptom of the disease, cannot manage buttons and other fine motor tasks. Many an RA patient has made the mistake of struggling to button their pants only to find themselves unable to unbutton them at the crucial moment. Yes, sometimes we pee ourselves, trapped in pants we cannot undo. There is nothing much more humbling than being trapped in pee soaked pants. So, let’s just remove those from the wardrobe. Also, remove anything with a small zipper pull, also a fine motor skill, zippers are another great way to become trapped in your own clothing.
Next, let’s take a good long look at that collection of shoes. Remove anything that ties, you can’t reach the laces. Heals are a no, your toes won’t tolerate a heal of any height, toss those to the side. Because your feet are going to swell, and may already be changing shape, also get rid of anything with a narrow toe, pointed toe, or slim instep, you’ll never get them on. How’s the shoe collection looking now? If you’re anything like I was when diagnosed, you’re down to a couple of pairs of clunky slip on shoes. Did I mention you’re attending a wedding this afternoon? Fantastic.
Speaking of weddings, let’s move on to accessories. See that collection of pretty hair ties, barrettes, clips and other things to add a little flair to your hair? In the bin it goes. Don’t worry, the hair will go soon enough, either because it is falling out (a symptom of RA and also a side effect of many RA medications) or because you can’t brush and wash it so you’ll get it cut short and manageable. Speaking of manageable, that jewelry box full of necklaces and bracelets with tiny clasps? Save it for your grand kids, give it to goodwill, you can’t put it on. Same for rings, with fingers that swell when they want to, rings are another great way to get stuck. If you don’t want to have it cut off later, leave it in the box.
At this point, you likely have a massive pile of things you can’t use anymore. Among them, likely some of your favorite things. Frustrated and sad? Welcome to life with RA. That was only what changed in the area of personal care. Notice we never even entered the kitchen or approached any household tasks.
It turns out, life with RA is full of obstacles. Literally every aspect of life is more of a challenge and many things are simply impossible without some sort of adaptive device. The world is full of doorknobs that can’t be turned, bottles and packaging that can’t be opened, stairs that make knees groan, the list is endless, obstacles are everywhere. And chances are…
Now that you’ve taken a walk in their clunky slide on shoes, you probably realize there are many times they are going to need help. So many, in fact, that chances are, they are not going to ask every time they need it. If they are stubborn and independent, they won’t ask for help a fraction of the time they need it. They also might not be inclined to let you help. Even on my worst day, I am not interested in help dressing myself. It feels too personal, too much like something a toddler could do, in short, it makes me feel incapable.
They don’t want to feel incapable. They do need help. Offers of help from you, really make their lives easier and make them feel loved and seen. It may be no big deal to you to bend over and pick up those dirty clothes they’ve been staring at all afternoon, to join them in the kitchen and offer to cut the veggies, to offer to help put on that necklace that makes their eyes sparkle. To your loved one with RA, those offers of help are offers of love. They are understanding and empathy. They appreciate them more than you will ever know. It may sometimes be hard to tell because
There is really nothing that alters someone’s sunny attitude like chronic pain. It is hard to be positive when you hurt literally all of the time. When all you want is a break from the constant ache of your inflamed body. It is not at all uncommon for chronic pain sufferers to lash out, become depressed, or both.
On days when pain is more intense, this can become particularly troublesome as your loved one becomes their least lovable self. Try to be patient and understanding. Know that what appears to be anger and frustration with you is actually anger and frustration at their own body. Possibly at themselves, as they beat themselves up for that sugary treat they ate yesterday, the exercise they aren’t getting and all the other little ways they might be contributing to the symptom flare.
Know that what appears to be anger and frustration with you is actually anger and frustration at their own body.
The truth is, it might be something they did, or it might not. Maybe it was that slice of cake that tipped the scale from a daily pain level of 4 to a holy shit, can we just cut my hand off now 9. Maybe it’s the weather, maybe they did too much yesterday, not enough, slept wrong, didn’t sleep. Possible triggers are everywhere, they don’t understand why they hurt, it is incredibly frustrating.
It’s also exhausting. Imagine walking around with the flu all the time. Body aches, exhaustion, brain fog, these are the most frequent and pervasive symptoms of RA. Sleeplessness due to pain and restlessness brought on by medication side effects are also a factor, as the more tired people are, the less tolerant they are of all life’s challenges.
Even good days are full of pain. It is the most persistent symptom your loved one with RA lives with. And no, Aleve doesn’t touch it. Narcotics don’t even touch it most days, not that those are an option for chronic pain sufferers, the dangers of long-term use are too high. They’re left to fight the pain with various over the counter remedies. They learn to live life in pain, to push through days and nights, hoping tomorrow will be better, as they toss and turn on a sea of pain. It is exhausting and undoubtedly increases the other most persistent RA symptom, fatigue.
Like chronic pain, chronic fatigue is a bit hard to imagine unless you have experienced it. I used to think it meant you felt tired a lot. I didn’t understand just how exhausted a person could feel until Rheumatoid Arthritis really reared its head. I still find it very challenging to put into words. Imagine you wake up underwater, but able to breath. Every movement feels as though you are dragging yourself through water or better yet, maybe it’s a good thick syrup. You also feel vaguely drugged, like waking up from anesthesia. You’re awake, but definitely not firing on all cylinders. If you’ve ever battled the all-consuming sleeplessness of caring for a sick newborn, imagine that had been 6 babies, and you were all alone, for weeks, that’s fatigue!
Exhaustion, brain fog, memory lapse, an inability to string thoughts into coherent sentences, all aspects of fatigue from RA. It can occur with or without proper sleep. You can sleep 10 hours a day and still feel fatigue. A kind of exhaustion that is unrelated to how much rest you get, there is little your loved one can do but hold on and wait for it to pass. While taking a nap might help a bit, they will undoubtedly wake up as tired as they are when they lay down. It’s a symptom that will go when it is ready and come back when it pleases. It is one of the more frustrating challenges RA brings to the table.
With a life filled with challenges, fatigue, pain, insomnia, and frustration it is easy to see that what your loved one needs most from you is understanding. They are juggling a rather heavy load, they often have to drop the ball to keep moving ahead, be okay with that. Pick up those dropped balls when you can.
Watch for the things they really struggle with, offer to take them off their plate, or, better yet, surprise them by getting it done while they take a much-needed nap. Encourage them on the hard days. Take time to appreciate the things they accomplish and celebrate the good days with them. Be a sympathetic ear they can turn to when the days are harder. They often feel alone in this disease, be the one they can turn to for understanding.
The light at the end of the tunnel. The lifeboat that carries us to safe harbor. The answer to a prayer long whispered. Hope is what allows us to trudge on through the darkness. It is the very knowing that whatever is happening now is not going to last forever that makes life bearable in the hardest times. That hope. It is essential to being human. Hope carries us through the truly dark and miserable times. Through challenges that look too big to conquer. Through losses that tear us in two. There with all the fear, anger, sorrow, resentment, Always there is hope. Sometimes the hope is so small we don’t speak of it, for fear our words will cause it to become airborne and float away on the breeze. Other times it is as big and bright as a neon sign and we find ourselves pointing it out to others, Can’t you see that Hope? It is breathtakingly real. Hope is the reason the caged bird sings. Hope is the force that gives dreams wings. Hope asks us to take a chance. It assures us it will all work out if we just hold on tight. It keeps us together when things fall apart. When lost in the dark, hope provides the spark.
Do you ever get the impression people don’t believe in your dreams?
Seems no matter what it is a person dreams, there will always be plenty of people standing by ready to burst the bubble with their reality. Notice I said THEIR reality, because, no matter how sensible their objections to the dream might be, they are based on their own perceived limitations.
So, what do you do when you have a dream the majority doesn’t believe in?
You could choose to spend your time and energy trying to convince others your dream can be reality, but, spoiler alert, that probably won’t work, and it will certainly suck up energy you could be using for better things, things that will help the dream become the reality.
Dreams can come true.
Rarely does this just happen, magically, without a great deal of work.
Dreams come true because we give them life.
We give them our focus, our energy, our hope, truth, and faith that it will be so.
We give them shelter, when we ignore the reasons they can’t come true and focus on the ways that they can.
When we do these things, dreams truly can become reality.
What are you dreaming into reality in 2020? What big dreams have you already made real? Share your story in the comments.