11 Tips for Treating Arthritis Hand Pain

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? 

Vacationing with Autoimmune Disease- 8 Tips for Avoiding Coronavirus and Other Plagues

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!

What Your Loved One With Rheumatoid Arthritis Wants You To Know

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.

It isn’t arthritis

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.

Treating RA is complex, frustrating, and frightening

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,

There is no cure

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. 

They want to be able to do it all, they just can’t

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.

What they can do today, they might not be able to do tomorrow (and it frustrates them more than you)

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. 

Everything is more challenging than it used to be

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…

They hate asking for help

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

Pain rules their world and sometimes their attitudes

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.

Fatigue is more than feeling tired

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.

The thing they need most from you is understanding

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. 

HOPE

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. 

Why You Need To Be Your Own Doctor

You have to be your own doctor.  A phrase we have all likely heard at one time or another, until recently I thought it simply meant you need to pay attention to your own symptoms and what your body is doing and ask for a medical opinion when you know things are out of whack.  I didn’t think it meant you need to literally be your own doctor.  Apparently, I was wrong. 

Apparently you need to be able to interpret lab results, read radiology reports, understand what you are looking at in said imaging, know all the possible side effects of everything you consume daily, and have a solid working knowledge of disorders and diseases that might pop up due to the things you know you are managing.  Otherwise, you’re wandering through chronic disease unarmed, naked, exposed to all the possible dangers.  Because your medical team is barely doing the job. 

In my last post The High Cost of Insurance Scripted Medicine I dug into the failure to use the tools we have to solve medical mysteries.  Obviously one reason to pick up that doctor hat ourselves.  When confronted with what happens once testing Is complete, it becomes even clearer that the more you know, the better off you will be.  What is and is not shared, when and by whom, varies a great deal from doctor to doctor.  Some will go through images or blood results bit by bit, explaining what they see and why.  More the norm is the doctor who presents the test results in broad strokes, not discussing the numbers but what they believe they mean.  Ignoring all information not related to the question at hand. 

Over the past three years that kind of medical practice has cropped up for me again and again.  Being curious and science minded, I have looked at many of those reports and test results myself over the years.  And I am here to tell you, sometimes what they don’t bother to tell you, could kill you.  Most recently they were not telling me about low potassium, continuously low for months now, as shown by monthly blood tests ordered by my specialist.  I became aware of the issue two months ago, when I looked at my metabolic panel results.  My rheumatologist made me aware of it yesterday, when he asked if anyone was treating it and informed me that my heart could stop if it is not corrected.  Thank you ever so much for the belated concern doc, but as the physician who orders and hypothetically monitors my monthly blood work, who did you expect to inform me and treat the issue?  Perhaps more important, what else would you not feel you were supposed to tell me about if it cropped up?  Kidney and liver failure?  Signs of cancer or infection?  Any of the other things I thought you ordered labs to check for each month?  Clearly, I need to do a better job as my own rheumatologist, he doesn’t appear to have the time. 

As an isolated incident such a story is no big deal really, doctors are people, they slip up, they miss things, they are, indeed, only human.  Unfortunately that is far from an isolated incident, it isn’t even the only oversight he brought up at my appointment yesterday (he also was unsure if I’d been tested for something that would make my medication potentially deadly, excellent work sir, I’ll be sure to give you a great rating, not), it is simply the most recent in a string of doctors failing to inform me of what they were seeing.  Information that, again and again, would have improved my health and quality of life.  Information they saw and knew how to interpret.  And I am not alone.  People suffer due to medical oversights every day.  Some of them even die.  A 2016 Johns Hopkins study suggested as many as 10% of annual deaths are due to medical error.  (Hopkins) That is an estimated 250,000 deaths a year. 

If 10% of deaths are due to medical error, imagine how many patients survived mistakes in a given year, one would hope that would be a much higher number, but lets imagine for a moment, that ½ of medical mistakes are survivable, that would still be 500,000 people a year dealing with medical errors and the fallout from those mistakes.  In our modern medical system, with well-educated professionals, endless checks and balances and medicine that is practically scripted, those numbers sound much too high.  SO what in the world is happening here?  Why are mistakes so common and deadly?  More importantly, how can we avoid them? 

The first, most likely culprit of medical error is time.  If you’ve been to any sort of doctor visit this decade you have probably noticed that time is precious.  The average appointment time for a patient visit is 15 minutes.  That is 15 minutes in which doctor and patient are expected to cover all health concerns, treatment plans, go over medications, review test results, and decide how to proceed.  Plenty of time if you are healthy, not much time at all if you are dealing with health issues with multiple aspects to cover.  Appointments become a race against the ticking clock, if you don’t have questions written down, chances are you’ll be gone before you think to ask.  And it is not possible to tell your physician everything in that time, so you hit the highlights and hope that is enough.

15 minutes may be enough for a coffee break, but it is not long enough to see the entire patient.  Not time to consider all the different issues a patient might have.  Not enough time to mention anything test results may have shown that the patient didn’t expressly ask about.  The more hurried the environment, the less answers you will get.  Visit an ER?  You will learn only about exactly the issue you came in for.  The imaging may show a massive ovarian cyst, but you are here for kidney pain, so only the stone they saw will be mentioned.  This is where being your own doctor can be handy, I’ve learned a lot by looking at those radiology reports and labs later myself.

The second issue is one that precedes the fifteen minute appointment model.  Doctors are rarely looking at the entire patient.  When you enter their office, you are there to solve a problem, for better or worse, they will be focused on the symptoms and testing that relate to what we are seeing right now.  Rarely will they have the chance to look through your patient history to put together pieces to this puzzle they have already uncovered.  It is going to fall to you to drag those pieces out when you think they might fit. 

At the end of the day, they are not in your body, don’t know all it has been through and all that it feels, and definitely don’t have time for a guided tour lead by your medical record.  It’s going to fall to you to guide them to the information about you they need to see.  If you know nothing about the kinds of things you may be dealing with, it can be really hard to know what to bring up.  Once again, having some working knowledge of medicine and your conditions could pay off. 

While having the time and money to pursue an actual medical degree is probably not in the cards for you, learning a bit about biology and all that you can about any conditions you are diagnosed with can help you be a better patient.  Doctors may not always appreciate the way you cite the things you’ve learned on Google, and that is okay.  You are not in their office to please them, you are there to get the answers you need to know about your own health. Remember, you may not be a medical expert, but you are the sole expert on your own body.

The High Cost of Insurance-Scripted Medicine

“You probably have the same virus everyone else has.”  The words, coming from a trained professional, do not hold the comfort I’m sure this well-intentioned doctor means them to.  She doesn’t seem to realize what I immediately understand from her statement.  Her words, meant as a diagnosis, are nothing but a guess.  She guesses I have a virus, just as she and other doctors have been guessing “everyone else has” the virus.  The fact is, no testing has been done.  Not on me, even though bacterial infections can quickly turn deadly on my medication.  Common sense tells me, if I don’t fit the criteria for testing for the cause of symptoms, “everyone else” probably didn’t either.  So, they guess we’re all sick from this virus they aren’t testing for.

Reality is, many of us will return, days or weeks later, sicker with the bacterial infection we had in the first place.  All because medicine insists on guessing.  Now, don’t get me wrong, I know there is a great deal of guessing and trial and error involved in medicine.  Causes of symptoms are often hard to determine, a virus does appear very much like a bacterial infection and vice versa.   This is all true. 

Yet, what is also true is, we have the technology to tell the difference.  A simple tissue swab can tell the difference.  But, why use the tests and tools we have when we can guess, right?  After all, most people will recover whether it is a virus or bacteria, on their own, in a few days.  So why waste the money on testing? 

The answer is millions of people like me.  For those of us with compromised immune systems, the difference matters, because the treatment matters.  When faced with a bacterial or viral infection, we need the right medicine to help us fight, because our immune system can’t do it alone.  A fact that should be clearly noted in our charts, or at least understood based on our prior diagnosis and/or medications. 

Having already tried, and failed, to alert this doctor to the fact that my medication leaves me at risk for fast spreading bacterial infections, I already know she doesn’t understand my concerns.  In fact, she’s dismissed them already, having repeated to me a phrase I suspect she got from the commercial for my medication, which only mentions strange fungal infection risks.  But, that’s fine, because she guesses it’s the same virus everyone else has.  Sigh.  This is the pathetic state of medicine in America.

We have the most advanced diagnostic tools and testing available yet insist on guessing instead of testing.  A practice that is leading to pain, suffering, permanent damage, and in some tragic cases, even death.  The fact is, you probably know someone who was hospitalized when the bacterial infection they visited their doctor for was mislabeled a virus and allowed to grow out of control.  Or worse, someone who spent weeks in physical therapy trying to heal a body part that turned out to be fractured, broken, or torn.  I know at least four such people.  People who struggled and did damage to arms, legs, backs, only to find out the diagnostic Xray or MRI they needed would have determined the problem, and that such imaging would have eliminated therapy as a viable first step for recovery.  People who needed splints, casts and surgery, not exercise. 

So, why is this the norm?  Why are doctors skipping testing that could give patients definitive answers in favor of the guess, wait and see approach?  If you’ve ever asked for an alternate treatment plan I bet you know the answer.  Insurance.

Insurance companies have a formula.  The formula says, when a patient exhibits symptoms A,B, and C you must first try treatment X, most often the wait and rest treatment, then we will approve a test.  It’s insurance scripted medicine, and it’s not working. 

Millions of Americans are getting sicker, doing damage to their bodies, often permanently changing their health status and mobility.  Because the doctor didn’t order that MRI, because insurance won’t pay for a shoulder MRI unless you have had this many weeks of physical therapy.  It’s a numbers game to insurance companies. 

We aren’t numbers, we are patients, with individual needs.  Sadly, to them, we are just a statistic.  Statistics say, doing a pap smear every 3 years will catch the cancer of most women early enough to treat it.  Most.  So, insurance will pay every 3 years.  Even if you have a high risk of cervical and ovarian cancer in your family, only every 3 years, 5 if you are over 30.  Because insurance doesn’t care about your personal statistics. Your risk categories and health statistics hardly figure into the picture at all. 

Medicine is scripted, and many of us don’t fit the leading role.  We are not statistics, we are individuals.  Individuals who come to medical professionals for their expertise, expertise doctors can no longer give us unless our pockets are deep.  The insurance companies hold the keys to the toolbox, leaving doctors to guess and patients to suffer. 

As someone forced by my health to constantly interact with this system, who hears horror stories from so many others fighting for the healthcare they need and pay hefty insurance premiums and deductibles for, I am ready for change.  It’s time to do something about the middleman, the runner of numbers and maker of scripts. 

It’s time to put medicine and the tools needed to properly practice it, back into the hands of medical professionals.

Are you ready for change?  Have you been injured, hospitalized, or dicked around by the system as it is?  Please share your stories, leave a comment, let’s talk about what needs to change. 

Daring to Dream

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. 

Photo by Simon Migaj on Unsplash

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.

Photo by Redefining Images

Are You Living with Painsomnia? Pain driven sleeplessness and you.

You toss and turn, desperate for a comfortable position and much needed rest.  The clock seems to taunt you as minutes turn to hours and still, sleep does not come.  Not for lack of exhaustion, mind you, you are certain you could sleep for days, if only you could get comfortable enough to drift off.  You get up, coat yourself in pain salves, swallow some pain pills, pray for relief, and retreat once more to the land of slumber, only to lie there, dreamless.  Increasingly frustrated and angry, you eventually realize sleep is not happening tonight and give up the fight.  If only you could give up the misery and exhaustion.

This is life with chronic pain. 

That constant, insistent ache that makes daily living a challenge often makes sleep practically impossible.  With nothing to distract from crying body parts, the pain easily becomes the mind’s main focus. You are suffering from what chronic pain warriors call Painsomnia (pain induced insomnia).   If you cannot quiet that throbbing ache, sleep will not come.  Sadly, far too often there is no quieting the agony.  The pain is, after all, chronic, meaning always present, never leaving.  You find yourself fantasizing about slumber.  What you wouldn’t give for one night of restful repose. For a few hours of sleep unencumbered by constant aches and pains.  For just one tranquil slumber. 

The pain and sleeplessness lead you to think crazy thoughts, like how much alcohol would it take for you to pass out cold?  Would the pain the next day be worth the few blessed hours of oblivion?  Where could you find a doctor who would anesthetize you so you can get a good nap?  The rest would be well worth the bill. 

You take to the internet in those sleepless hours, seeking something, anything you have not yet tried for sleep.  Sadly, you know every remedy by heart, every useless one.  You’ve tried sleep meds, only to find that pain can easily break through them all, leading to an even drowsier, more frustrated you, with deeper brain fog and less patience for the rested world.  You’ve used props, pillows, cozy blankets, weighted blankets, noise machines, blackout curtains (even knowing pain, not light was the problem, but desperate times call for desperate measures and the truly desperate will try anything once.)  You’ve tried every natural sleep remedy on the market, from teas to tinctures, none of it has offered you the promised restful sleep. 

Unable to find a new sleep remedy, you search for answers for the agony.  After all, it, not wakefulness, is the cause of your troubles.  Without it you would surely be blissfully snoozing in your cozy, pillow filled nest.  Again, you strike out, finding things you have tried, all of which have failed to bring the relief needed in the dark of night.  There is something about pain in the night that makes it sharper, more annoying, harder to bear. 

Perhaps it is simply that we are our most vulnerable selves in those dark hours.  Perhaps it is being alone with that pain that makes it so all encompassing.  It may even be as simple as not having anything else to distract us.  Days are filled with things to take our mind off pain after all, but when we hit the sheets, it’s just us and that cranky body.  The body we have likely pushed through the day, ignoring its distress, promising it we will rest later.  The joke’s on us, it’s now later, there will be no rest. 

As the sun begins to rise, your hopes turn from the sleepless night behind you to the exhausted day ahead.  Maybe you can catch a nap.  Perhaps tonight will be better.  All you can do is hope.  What gets you through the sleepless nights?  Is there a sleep remedy that works well for you?  Tell us your sleep secrets.  We’d try anything for a little rest.  Speaking of which, if you see that anesthesiologist, kindly send them my way. 😉

Making Plans with Rheumatoid Arthritis

One of the most challenging things about life with RA is how unpredictable and erratic it is.  With flares often coming out of nowhere and inflammation hop scotching around the body in apparently random ways, it can be hard to predict what you can do from one day to the next.  Feet that are happy today may be replaced by feet that seem to be made of shards of broken glass tomorrow.  Hands that work, become swollen and weak overnight, or even from one end of the day to the other. 

Sometimes the reason for pissed off body parts is easy to predict.  Chances are that too long walk will result in broken glass feet and irritated knees every single time.  Then again, some days it won’t.  Other times it makes no sense at all and you’d never guess that riding a stationary bike would somehow piss off your hands.  (My current situation, and seriously, why???)

The ever-changing nature of the disease makes it really challenging to make and keep plans.  Will next Thursday be a good day for shopping with friends?  Maybe.  Let’s consult the weather, see what else is on the calendar that week, where we are in our medicine cycle, the moon cycle, our menstrual cycle…once you take all that into account, correct for chaos and maybe grab a crystal ball because who knows what will be mad that day?  Certainly not someone with RA.  It could be a great day for shopping, or it could be a day spent limping, coated in pain remedies.  The fact is, it is impossible to tell, even on Wednesday night.

Sadly, few people without RA understand the variable nature of the disease, leading to a whole lot of misunderstanding and judgement.  People simply cannot imagine why you are calling to cancel plans with them today when they saw you yesterday on that three-mile hike.  They don’t know what it is like to have a mobile body one day and a body frozen with arthritis symptoms the next.  So, they think we are flakey, lazy, dramatic, lying…we aren’t.  We are simply doing the best we can to live our lives with the world’s worst house guest.  One that frequently kicks our ass as we sleep.

It seeps into every aspect of our lives, ruining holidays and weekend plans, making vacation planning one giant question mark. Can we do a walking tour March 21? Let’s grab the crystal ball.

Will we be able bodied that day, or will a wheelchair be necessary?  Sadly, the extremes are that big.  (Try explaining transient wheelchair use to the able bodied, they really don’t get it.)  So we either can the plans all together, or commit to something and hope for the strength to do it, and maybe a low enough pain day to even enjoy it.  It makes that 7-day cruise with three back to back at port days look less like a relaxing island-hopping adventure and more like a shark infested obstacle course you may have to navigate completely submersed, without an air tank.  In other words, impossible. 

Sadly, many of us will see that possible obstacle and give up right there.  Not up to facing the challenges and judgement, the stares and shockingly frequent snide comments, we choose to stay at home with our impossible house guest. 

Naturally this leads to feelings…anger, sadness, feeling left out and defeated, feelings we spend way too much time with due to the nature of RA. 

As I prepare for a much needed and deserved 7-day island hopping adventure myself, I am planning for good days and bad.  Trying to build in rest days and telling myself I will be okay when I, undoubtedly must cancel plans because it turns out that rest day wasn’t enough.  Looking at those back to back at ports and praying for three good days in a row (HA!), so I can explore new places.  Making arrangements for mobility devices to be available in case I need them.  Stealing myself for the weird looks and inquiries from people who saw me walking yesterday and in a wheelchair today.  Hoping the loved ones I am traveling with understand my ever changing limits as well as I think they do.  Knowing that the worst that can happen is I will have to spend a pain filled day laying on a beach or near the pool.  Compared to some of the days my grouchy houseguest and I have spent together, that truly will be paradise.

How do you deal with the unpredictable nature of RA?  Does it stop you from making plans, or do you plan and hope for the best? 

Planning a Vacation from Rheumatoid Arthritis

Not really, but a girl can dream…

Some days I feel so good I almost forget about the battle happening inside my body.  Today is not one of those days.  Today I woke up feeling like yesterday’s birthday pinata, cracked and beaten.  It seems my body is reminding me who is boss here, and unfortunately, it isn’t me.  A perfect time for such a reminder as I plan a vacation adventure with loved ones.  RA (rheumatoid arthritis) steps in and says ‘hey don’t forget about me.’  Oh don’t worry, I won’t, you’re coming along for the fun, whether I like it or not.  I just hope my traveling companions are as willing to compromise with you as I have become. 

Life with RA sometimes feels like an impossible algebra equation, with far too many factors to weigh and things to consider to predict the outcome.  Will a busy day and a few drinks tip the scale from okay to why me?  Perhaps, did I factor in the weather, hormones, that seriously crappy meal I just ate, and the conversation I can’t stop obsessing about?  If not, the whole body seize might be surprising.  To be honest, this one is not.  I definitely helped create this bad day.  Recognizing the part I play will hopefully help my vacation be full of more good days than bad. 

So how did I get busted and battered this time?  Well, it all starts with pushing back my infusion because I caught a cold.  Not taking the blame for that bit, it is what it is, I had to shake the cold before stepping into the arena to knock out my immune system.  Nobody wants pneumonia.  So, I pushed my infusion back a week.  No biggie.  Okay, maybe a little biggie.  Had I behaved myself, I might be just a little stiff and achy right now.  I didn’t.

Instead of taking it extra easy, knowing my meds were overdue and I am just now getting over the cold I delayed them for, I carried on like normal, doing whatever I wanted.  Big mistake, I do wish I could take it back. 

Instead of being extra gentle with myself I just spent two busy, late nights with friends and loved ones.  Days full of activity, shopping, and housework, nights filled with bad food choices and alcoholic beverages.  As that pretty much describes my vacation plan (minus the housework) I’m realizing I may have to adjust the plan a little. 

I’m going to have to behave and pace myself, or risk spending most of my vacation in a painful, grumpy state.  Something I already knew and have thought a lot about, as I prepare to see some of the world with a fun and busy group of people.  I’ve even spoken up about my limits during the planning stages, making it clear, I hope, that I can’t go all day and all night and still have a good time tomorrow.  Today is my personal reminder, I also can’t eat and drink whatever I like and continue to have a good time. 

Noted, all things in moderation, especially alcohol and cheese. 

Today may be a bad day, but it is a good day to think about those vacation plans.  A great day to plan times to rest, times to behave.  A perfect day to look at that 10 day itinerary with my limitations solidly in mind.  To plan down-times before excursions I know I won’t want to miss, to consider which days I might be best to take the sober friend role, and which nights I need to get to bed at a reasonable hour so tomorrow isn’t spent in a painful fog, always searching for the next rest stop, or worse, unable to leave the room. 

It’s also a perfect day to look at the mobility aids I’m going to need to enjoy this trip, as my feet remind me what happens when I walk as far as I think I can.  As much as I didn’t want to be, I’ll be the way too young to need a cane/walker lady everyone is staring at and maybe sometimes the chic in a wheelchair, because I’m not missing that ghost tour. Now if I could just figure out how to keep the weather stable and lovely for the entire trip, I just might get to do everything on that new, more reasonable trip bucket list.

What helps you have a good time when you travel?  Do you plan for success or wing it and pay the price?  What remedies and items do you bring along when you travel to keep RA symptoms in check?  Give me your best travel tips, I’ll take all he help I can get. 

2020-03-19T08:23:00

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