The Double Edged Sword Of Knowledge: The benefits and drawbacks of being “in the know”

“Unless we learn to know ourselves, we run the danger of destroying ourselves.”
― Ja A. Jahannes, WordSong Poets

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As a lover of learning and a science nut, I have always sought and craved Information. As a chronic degenerative disease sufferer I have come to know it as double edged sword. There is still power in knowing, surely. But sometimes, the knowing steals the wind from your sails as you face the reality of degenerative disease.

I will admit, on more than one occasion, the fear of the knowing has stopped me from getting the testing and imaging done that I needed. After all, until I’ve seen the damage in black and white, it’s not official, right? Until that radiologists report hits the hands of my doctor, I just have some mysterious symptoms that could be no more than inflammation. And so, in the not knowing, there is solace, there is endless hope, but also, there is pain. Occasionally, those symptoms will subside on their own. Usually they do not and I eventually submit to the testing I’ve known I needed all along.

Next comes the “fun” part. The waiting. Despite my cool and calm facade I am not the most patient person in the world. Especially when it comes to test results. Once I’ve decided I want to know, I want to know now. Like NOW. Hell, yesterday would be better! Once I have flipped that switch from ignore it to action mode, it is time to be in the know. I’m ready to tackle the issue, so tell me the details doc.

Then come the results. Sometimes they are not what I dreaded. The excruciating foot pain I was sure was a sign of degeneration in that area of my foot was nothing but a ball of nerves. Simple change of footwear, stand a bit different to relieve pressure on that area, if all else fails a quick and easy outpatient surgery, snip, snip, good to go. No thorns or spikes from that diagnosis. (No heavy pills to swallow even.)

The same with the hip pain I have been struggling with. It’s “just swelling and inflammation associated with rheumatoid arthritis”. No remodeling of the bones, no spikes, no problem. Hope. Knowing the swelling will reduce and the hip will swing freely again. Knowing continuing to do what I’m doing and upping the anti with more anti inflammatories and a bit of pt will get it back on track.

Then come the results of the elbow imaging. Ah, here is the sword, open up and swallow! Remodeling, narrowing of joint spaces, and oh yeah, literal spikes! Several new medical terms and web pages later, I have a clear but somewhat depressing picture of the reality of the state of my elbow. It is damaged. It won’t straighten out because it can’t do that anymore. And the pain won’t likely leave anytime soon. They can probably grind off the spikes. But narrowed is narrowed and I’m stuck with that damage.

Poof goes the hope. Out come the tears. For a minute (maybe 5). The benefit of being a half glass is better than no glass at all kind of thinker. Hope always comes back. And that stubborn willful side that will not quit. I love that side of me. She is the warrior in me. Without her I would be stranded like a mastless sailboat on the sea. And so I wipe the tears, go back into research mode, and start to form a new plan. Because knowledge IS power. And there is always something one can DO to cope with or change their situation. So I’ll swallow that double edged sword. Because like every sword swallower past or present, I am a fierce, fearless fighter.

Rainy Day Remedies

“Be still, sad heart! and cease repining;
Behind the clouds is the sun still shining;
Thy fate is the common fate of all,
Into each life some rain must fall,
Some days must be dark and dreary.”

Henry Wadsworth Longfellow-The Rainy Day

 

It’s a rainy, drippy morning here in Maine. After the sweltering hot humid days we’ve suffered through the last few weeks, I welcome the cooler air. At the same time, my body is reminding me how little I have come to love rainy days!

There is no denying, anyone with any sort of arthritis will tell you, rain means pain. With an average of 40 inches of rain and 67 inches of snow per year, that is a lot of weather induced pain days! The result? This pharmaceutical wary chic has learned a whole lot of ways to soothe arthritis pain! Here’s a rundown of some of my favorite ways to quiet cranky joints.

1. Turn up the Heat-

If you have ever let an arthritic joint get too cold you know just how much cold is the enemy! Applying heat packs to aching joints, dressing to stay warm, and cuddling up in a heated throw are all great ways to keep joints warm and toasty. Who doesn’t like a warm toasty joint?

2. Mighty Mighty Peppermint-

As an herb or an oil, peppermint is one of my favorite medicinal plants. Steep peppermint leaves in water (or add a few drops of peppermint oil) then soak a towel in the peppermint water for an easy and soothing peppermint compress. I also keep peppermint oil blended with avocado oil in a handy roller bottle for topical application.

3. Turmeric to the Rescue-

The anti-inflammatory powers of turmeric are pretty well known at this point! Part of my daily regimen for inflammation fighting, I always have a little extra on drizzly days!

4. Soak it out-

When it comes to a relaxing way to soothe aches and pains, nothing beats a nice long soak in a comfy tub. Even more-so if you add Epsom salts and some soothing herbs like eucalyptus and lavender.

5. Time for tea-

My cupboard is stocked with a variety of medicinal teas at all times. Ginger, cinnamon, turmeric, peppermint, willow bark, cloves, nettles and st john’s wort are just a few of the helpful plants that can be found in tea form. Hot mugs are a bonus remedy if you have achy hands, wrap them around the mug and let the soothing heat seep in!

6. Don’t forget to hydrate-

Hot or cold, dry or rainy, your body needs water to carry away the things that cause it distress! So drink up!

7. Rest is the best!-

In busy lives it is not always possible, I know. But your joints will thank you if you listen to their cries of discomfort and take it easy on them on drippy days! Remind yourself that taking it easy on them when they are inflamed means less pain and erosion later. So, grab a good book, snuggle down in your favorite spot, and take that nap you’ve been daydreaming about!

 

The Road to Diagnosis

“Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence.”
-Lin Yutang
green rice field

Photo by Johannes Plenio on Pexels.com

If you have an autoimmune diagnosis, there is a pretty good chance that, like me, your diagnosis story is long and winding like a country road, with just as many bumps and potholes. My symptoms began as early as my teens. Because of the nature of rheumatoid arthritis (RA), it is hard to say when my normal “growing pains” became not growing pains at all but signs of a waking autoimmune disease. My knees began to really bother me sometime in middle school. My wrists by age 19. Perhaps I had JRA all along. It is hard to say now. What I do know is, the signs were there for more than a decade before my diagnosis. That is over a decade of silent destruction, misdiagnosis, and probably worst of all, improper treatment plans. I cringe to think of the number of times I engaged in therapies that are absolute NO’s for anyone with RA. Had I known sooner, I would have done so many things differently.

It all began with pain and occasional swelling in my knees. As a growing teen with flat feet, who hated wearing appropriate shoes for flat footed folks, my doctor, my parents and I all agreed, it was probably just growth and flat feet. Now, mind you, I have not grown so much as a ½ inch since that time. But, at the time, the diagnosis seemed to fit. So I took ibuprofen, iced as needed, and learned to live with cranky knees.

Next came wrist pain. Like the knees, it came and went. Sometimes there was swelling visible. At 19, it became debilitating enough to interfere with work, so I went to the clinic to have it checked out. The Dr listened to my complaints of pain and swelling, somehow translated that to numbness and tingling, and diagnosed me with carpel tunnel syndrome. He recommended I not use computers as much. I laughed because 19 year old me spent next to no time on computers, but assumed it must be something else I was doing, likely at work, so I took the diagnosis, and did the prescribed physical therapy. I would go on to be misdiagnosed with carpel tunnel syndrome 4 separate times by 4 different physicians. In fact, it was the constant misdiagnosis of carpel tunnel that kept me pushing for the right answer in the end.

Within two years of that carpel tunnel diagnosis, I was diagnosed with rotator cuff tendinitis followed by tendinitis of the elbow. Both were attributed to my work as a cashier as was the flare up of my “carpel tunnel syndrome” that occurred at that time. More physical therapy chased with ice and ibuprofen. Braces for the wrists, which were now both troublesome.

Approximately three years later a bad step on the mudflats leads me to wrench my knee and lands me in the er. This is the first time a doctor sees the damage RA has been causing. Unfortunately, neither he nor my physician at the time saw what they were seeing. That ER docs comment haunts me. Hind sight being 20/20 and all, I know that was my first chance to know my body was attacking itself. The proof was right there in black and gray. As the ER doc informed me my knees looked like those of a “40 year old football player”. That made me wonder. That should have made my physician wonder as well, as I was a not so athletic 24 year old. My physician decided that the knee issues were due to the fact that I was overweight and had strained them in the field. He prescribed rx strength ibuprofen, recommended that I lose a few pounds and advised me to limit activities that put a lot of strain on the knees.

And so, life went on. I had periods with not much pain and swelling and periods where it would come back. Knowing my body got cranky, I just allowed it to be. It is crazy the amount of discomfort a person can have and tolerate when they think it’s just how it is. Eventually, the wrists flared up to the point that they could not be ignored. I went to the dr, he confirmed my earlier diagnosis, talked about surgery as a possible solution and sleeping in braces. The braces helped some, until they didn’t.

Fast forward a few years and several job changes. I’ve had a few more flare ups of “tendinitis”, another diagnosis of carpel tunnel, and my first 3 autoimmune diagnoses (Poly Cystic Ovarian Syndrome, Gestational Diabetes, and Hashimoto’s Syndrome). I’ve taken countless doses of ibuprofen and been in physical therapy several times, for various body parts. I take a job in animal care that is intended to be a stepping stone. It’s a step that will actually end my career. (Oh that hind sight can be so enlightening but also hard to swallow.) I go into the job fully aware that it is demanding and repetitive. “Knowing” I have carpel tunnel and will have to take care, I am sure I can push through, prove myself and make the move to research (and a less physically demanding job). I’m tough and hardworking. I have no doubt I can do this. How wrong I was.

The issues started pretty much immediately. My hands of course, were the first to complain, but I expected that and knew well how to treat those symptoms, so I ignored that and carried on. Soon other things began to join the chorus of pain. In the short 2 years between starting that job and receiving a proper diagnosis I would be seen and treated by 3 different doctors for practically every jointed part of my body. I would spend countless weeks in physical therapy for everything from my neck and shoulders to knees and feet. I would begin to see a chiropractor regularly to manage the symptoms of a physically demanding job. I would unknowingly, under the care of well meaning professionals, do everything someone with RA should not do. And the prize at the end? Disability.

It was during this time that I finally began to realize that something larger was happening in my body. The day I knew for sure was the day my primary physician diagnosed me with bilateral carpel tunnel syndrome and bilateral tarsal tunnel syndrome. It seemed both my wrists and ankles were having the same issues. And so I started asking questions. I asked my doctor if inflammation could cause that. I asked if there could be an underlying cause. Instead of the surgery he was recommending, I finally got the referral I’d needed. Three months and one little blood test later, I was diagnosed with Rheumatoid Arthritis. Unfortunately, damage had already been done and I was well on my way to disabling symptoms. Within 6 months I would have to leave my job. A year after that I would begin to accept that the temporary setback I saw RA as was not so temporary. It would take a lot longer to accept that I am disabled by it. As a matter of fact, I’m still working on that one.

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