RA Blog Week-Day 2-Tips and Tricks

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After 23 years, I have a few tricks and tips for coping with the issue of a chronic debilitating physical condition, even though I look healthy and normal. There are always little things that we have to think of that most able-bodied/healthy people may not consider at all when it comes to moving around. There are a few tools that can assist and provide some measure of comfort.

My favorite and best known tool is wearing gloves.  I wear them no matter what the weather, even in summertime. Of course, I get stared at funny for that too, but what they don’t realize is that hot weather is the best for soothing aching hands within a pair of gloves. When I’m out and about, driving too, I wear Isotoner unlined women’s spandex shortie gloves:

https://www.isotoner.com/p/isotoner-womens-spandex-shortie-gloves-56080?color=BLK

They can also be purchased on Amazon. Prices fluctuate on Amazon for these, especially depending on time of year.

For work/home, I wear Imak Active Gloves:

https://www.amazon.com/s/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=imak+active+arthritis+gloves&rh=i%3Aaps%2Ck%3Aimak+active+arthritis+gloves

Imak offers an Arthritis version, which is without the grippers found on the underside of the Active version. I prefer the Active version, as they seem to last longer and the grippers are a big help when grasping for an item.

To keep the chill away (thanks, Raynaud’s!) and provide warmth to my joints while at the desk, I use a heated wrap, which comes with handy pockets:

https://www.target.com/p/royalmink-chill-away-heated-wrap–throw–slate—sunbeam%C2%AE/-/A-51511752

You can place it over a chair for heat through your back. Wear it length-wise, covering your legs. Wrap it around hips, knees, shoulders. It’s just big enough without being too cumbersome as a blanket can be at times. It’s perfect for the office. It comes with a standard plug. I haven’t had any issues so far with it not working on me as some mention in reviews. I do think it helps to keep pressure on it so that the heat remains on more consistently. It will eventually turn off as part of a safety feature. While on, it does seem to run through a heating cycle: flaring hot at first, fading away over time, then flaring back hotter. Kind of like Rheumatoid Arthritis, but way better.

For some extra support for hands and wrists, which are my main joints damaged by Rheumatoid Arthritis, I’ve found that these items are helpful, especially if you need to type away!

A keyboard wrist cushion is a must have for anyone with RA typing on a computer. I found a handy laptops sized one here, and it offers an elastic to hold it around the laptop edge:

https://www.amazon.com/gp/product/B009R5SJGQ/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

A wrist cushion for the mouse is another must have! This one offers the option to buy one or two (one for home, one for work) and is super comfortable:

https://www.amazon.com/gp/product/B0714QSDSW/ref=oh_aui_detailpage_o04_s01?ie=UTF8&psc=1

Another item that also helps more than anything is a wrist/hand brace. I’ve tried a few over the years, but my favorite is by Futuro with their Slim Silhouette Wrist Support, designed for women (less bulky design, basically). They offer it for the right or left wrists; you have to buy the specific side. They are available here at Amazon, but I’ve also found them at Target and Meijer:

https://www.amazon.com/gp/product/B005X5U39U/ref=oh_aui_detailpage_o02_s00?ie=UTF8&th=1

Another trick I’ve learned over the years involve modification of movement in order to do common tasks, like opening doors. Heavy doors are one of my daily frustrations. I try to never push a door open with my hand flat out against it, wrist bent. If anything, I’ll turn the back of my hand against door, not bending wrist but holding it straight with my arm (like an extension of the arm) and use the lower arm with back of hand to push in. The main trick is to use my body weight to open it up, utilizing a bent elbow pointed out, my shoulder, a bent arm. If I need to hold a door open for someone behind me, I use a foot, arm, lean into door; anything to take the weight off of a particular joint area (such as hand, over stressing a wrist, etc.) and use the weight of my body instead through a larger limb/number of parts. Sometimes it can feel like a contest to come up with how to open a door without using actual hands (as most people do). If it’s a pull open door, I try to pull it open with enough force that I can catch the door with my arm bent, putting the lower half of it against the door itself, using the body weight through the arm and shoulder to hold it open. Granted, this only works if your arms/elbows/shoulders aren’t often flaring. But never use just the hand/wrist to carry the weight of the door.

Oh, another tip for doors, such as when leaving the restroom? Grab some paper towel to use for touching the door handle (unless you can push it open with a shoulder, etc.). I always do this at work. I’ve heard a few too many people just walk out of a stall and pull open that door, walking out. Eyes wide, horrified. “Did I just hear them leave? Yes, I did. Ew.” Our immune systems have enough to deal with, we don’t need any of that bullshit, right? Paper towels to the rescue!

Back during my “Still-a-Good-Catholic-Under-My-Parents’-Roof” years in my late teens, Rheumatoid Arthritis made it complicated to extend the “Peace Be With You” without my hand being crushed by others, let alone the Priest (this has happened). Not such a peaceful blessing when it triggers a hand flare. My Mom actually came up with an effective solution: clasp hands behind the back and bow forward, stating “peace be with you” while smiling (crucial!). If they look confused, it’s up to you if you want to tell them why you’re neglecting to offer your hand during the sign of peace. You have RA. It’s not worth suffering a new flare. Also think of the germs you’re sparing your compromised immune system. Can you be certain that they always wash their hands after using the restroom? It’s not really a sin either (though it should be!)

Lastly, the biggest tip/trick I have is to remember to give yourself permission to take care of yourself. You’re allowed to say no. You’re allowed to say yes. You’re allowed to stay in. You’re allowed to go out. It doesn’t have to involve anyone else. It could just be a date with yourself. A chance to sit outside in the warmth of the sun, while sitting in the yard or in a park. Or watch from the window or out back as the sun sinks down and the moon rises up in the dark. You are allowed to be mad. You are allowed to be sad. You are allowed to tell someone else if it gets to be too hard. You are allowed to ask for help if you feel life’s gone too far. You are allowed to want to do everything on your own. And when you can’t, you are allowed to be frustrated and groan. You are allowed to try. You are allowed to cry. You are allowed to scream at the heavens demanding “Why?” You are allowed to feel joy, laugh, and smile. You are allowed to need your time and energy to be spent on what you consider to be worthwhile. Find something that always brings you joy. Something that RA can never destroy. Keep it within easy reach for those moments, days, (years…) when life is too overwhelming to cope.  Use this as a tool to ignite the fire inside of you and give rise to hope.

Take care of you!

RA Blog Week- Day 1- Mental Health

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      Rheumatoid Arthritis feels like a curse: unfair, unexpected, devastating, and incurably troublesome. It rises up out of nowhere and takes over your life, robbing it of any trust you held towards the body that contains you. You look into a mirror wanting to trust what you see, at least until you discover that somewhere deep inside lies a destructive traitor. It leaves you feeling lost and overwhelmed, wondering whether anything will ever return to how it once was before.  The body that’s always been your home turns into an unknown abode with stuck doors and odd angles, full of shadowy corners and busted lights. You can feel it linger inside you. Will you ever feel at home again?  Continue reading

RA Blog Week 2017

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I will be participating in the 3rd annual RA Blog week this year, which funnily enough, begins after a Humira weekend and on the day of a rheumatology appointment. So I’ll be primed and ready to contribute on the #chroniclife of RA!

 

Trigger, trigger…

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The gnawing chasm of infertility was awakened tonight, while online. It woke up, yawned wide, and threatens to consume me whole. In my resentment, I remembered this piece I wrote for a writing class. It’s about the day I got that final lab test result phone call where I found out that my ovaries decided to retire to Boca Raton already. The ticking in all of my writing refers to my mechanical Mitral valve. My heart is a clock ticking out all my remaining moments, not just a beat to walk to anymore.

Beginning – Spark

Tick, tick, ticking away, her heart ticked hard and loud behind her healed ribs. Shock flowed out from the center of her twisted gut and spread up and out to all distant corners of her body as she listened to the Doctor speak those words. Those awful words. Rose stood in the parking lot under a sunny sky wiped clean of clouds by the wind while the words revealed that it was too late, her levels too low. Darkened clouds rumbled from along the edge of her thoughts, threatening to drown her in an overcast mind. Grief struck ground first, followed by despair’s mighty roar. The fantasy that she had maintained for at least a year now, often ballooned by hope, just deflated in the blink of an eye. It had all come to this. Now. Not yesterday, not before the doctor appointments, the tests, the hopes, the dreams, the fears…

Those fears were real. Aged 36, Rose’s fertility was no longer ripe for the picking. She may have looked young still for her age, but her ovaries had aged considerably. The doctor was not certain as to why, as it could be any number of things related to her age, stress levels, medication, or her health conditions. But the why did not really matter. Not that much. The answer remained the same: it was too late. Levels were undetectable. The beginning of a little family, just one child to call their own, had stopped before it could even start. The spark that held so much promise in its flicker quickly vanished. Despite the sun shining brightly overhead, Rose was left in darkness, all encompassing.

In Memoriam

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Hello again.

My last post gave promise of potential fire to spill forth. Unfortunately, all of the air needed for my intention to burn was sucked right out by a hole punched into my ticking heart. My Grammy, as that is who she has always been to me, passed away on March 26th. She was 91. It was always somewhat expected, and yet we never thought Death would swoop by so quickly. The weekend prior, she began exhibiting certain symptoms and behaviors indicating that she was ready to go and join my late Pappy.

By the following Thursday/Friday, her symptoms worsened. She sunk into herself deeper, and comfort care with Hospice support would be put into place. I finally worked up the courage to visit with her that last Saturday, the 25th, for two glorious hours. We thought she would at least have a few more days. She had only that night. But it was her time to go and finally be with her Bob again, after five years of missing him by her side. My beloved Grammy and Pappy, rest in peace, together at last.

The writing below was created the weekend prior to her passing. It was a way to process my fear of losing her completely, even though a part of her had become lost for some time now.

Conscious

Breath hooking upon the edge of wakefulness, Rose pulled herself up and out of the shimmering pool of slumber. Eyes cracked open against the soft lamp light, a surge of ticking in her chest as her body returned to the waking world to find that she had fallen asleep on the couch again. The TV screen showed images of a bogeyman chasing down screeching children, biting at them, until blood and gore revealed that the children were no more. Rose pulled herself up to sit properly on the couch and groaned. The last thing she needed to sleep through was a horror movie to gnaw at her dreams and wake up a bogeyman of her very own.

As Rose reached for the clicker, snatches of her dream world tugged at her. That’ll show her to ever fall asleep again with the horror TV channel left on to haunt her all night long. Dreams are designed to be confusing and revealing, but since she had started the antidepressant, her dream world had found a way to absorb her more fully into its skin. An eerie land of themes repeating night after night – going from one place to the other, with shadows of her past making the buildings appear far too solid to her touch. She traveled from room to room, seeking out the unknown purpose of this illusory life, hoping to uncover a brilliant treasure buried deep within herself, while always remaining oblivious to her delusion.

She leaned back into the velvet soft couch, pulling the fuzzy blanket up to cover her chilled legs and feet, smothering the nagging discomfort in her mind and aching bones. At 3 AM, the shadows of yesterday were still in a tug of war over surrendering tomorrow to become today. Black night still painted the windows, without any promise of the brilliant strokes of sunrise yet to be rise. The side of the world remained asleep, with the faith that a brand new day would greet them, whether they wanted it to or not.

Rose was not ready for tomorrow, let alone today. She wished the night could linger forever. If the sun did not rise, slumber could cover her like a blanket and protect her from a world that she was not certain that she wanted to live within. She was over it. Over having to get up, get dressed, and get going. Over pushing herself despite her exhausted mind and fatigued body, trying to live a life like any able bodied person, pretending to be free of disease. Her past depression had captured her once more, spinning her thoughts until she landed back where she had started all those years ago. She wished only to fade out from the universe, like a dying star that ultimately sucked itself out of existence. No light, no shadow. No air to breathe. No more thoughts to choke her. Only free to be, simply nothing. But the universe thought otherwise, waking her up each day whether she enjoyed it or not. And here she was, again, awake. Alive. Stuck.

The house was quiet save for the constant ticking of her heart. Both her husband and dog were already asleep in the master bedroom, oblivious. Tommy had learned to leave Rose alone and asleep on the couch, dead to the world, depositing her pill box on the table nearby for when she finally stirred back to life. It was easier that way; let sleeping dogs lie. She would wake up eventually, at 2, 3, or maybe 4 AM, taking the pills designed to keep her alive or convince her that it was all generally worthwhile. Though now after the news she received from her Mother last evening, she was not certain just how much more she could take.

Continue reading

The Salamander

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You try to light a little flame of hope, but the light throws shadows upon the wall. They whisper and try to close in on you, obscuring the brightness of the flame inside that deserves to radiate.

It’s time to blaze.

#RABlog Week – Day 3: Biologics Can be Scary – Run Like Hell, RA…

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Biologics. For some, the word instills fear; “Will this help me? Or will this kill me?”. For a select few, especially online, the word triggers a spat out reaction of “Bullshit!” or “Conspiracy!”. These reactions might lead you to desire nothing but to clench your eyes shut over treatment options and suffer in silence. But if you can crack at least one eye open a smidge, you just might see how biologic medication holds the potential to transform your world in ways you had sworn off as being impossible.

Biologic medication is a form of DMARD (Disease Modifying Anti-Rheumatic Drug). Biologics are genetically engineered to disable the disease process through specific interruption of the inflammatory response. Compare this to other traditional DMARDs, such as methotrexate, which suppress the immune system overall. Patients have several different biologic treatment options, which attack the disease process in different ways. For my disease process, the best option has been a TNF blocking biologic called Humira (Adalimumab). TNF stands for Tumor Necrosis Factor, a protein which triggers the inflammation response within the immune system. For Rheumatoid Arthritis, Humira potentially offers varying levels of relief (depending on the patient). Humira can potentially reduce disease activity and symptoms by interrupting that over-excited inflammation trigger. The general goal is to reign in the progression of the disease. For some patients, that means experiencing varying level of remission. But keep in mind that by no means are biologics, along with any other currently available treatment, considered an actual cure. With that being said, the potential for improvement in your quality of health can feel priceless.

Speaking of which, a common argument used to discourage one from biologics is the higher cost of the prescription. This class of medication is more expensive than the old-fashioned DMARDs, however the manufacturers already came up with a solution via prescription assistance programs. Humira offers a copay savings card through Abbvie, which reduces my Tier 4 copay to $5 per refill. So when someone spouts off on the internet about how the heartless prescription companies just want you to become dependent on their medication and bankrupt you in the process, just remember that there is likely a low-cost assistance program potentially available to you that shows otherwise. Some of these manufacturers will even provide the medication free of charge provided you meet certain eligibility criteria (such as: your insurance refuses to cover it, you have no income, etc.) Perhaps if these companies advertised the low copay availability in a fashion similar to Subway’s $5 foot-long marketing, the naysayers might finally back off, eh? For more options, check out: http://www.pparx.org and http://www.needymeds.org or simply google the phrases “prescription assistance program” or “patient assistance program” with your preferred biologic’s name. Also, if you have any issues or concerns regarding insurance coverage or approval of the medication, contact the manufacturer. They can help you get the treatment you need, especially if your insurance company says otherwise. Don’t be afraid to ask for help in obtaining this course of treatment. You’re worth it.

How do I know? I know it can be worth facing the fear and taking the risk because Humira has greatly improved my quality of life. Prior to Humira, I was prescribed Arava. I was working a long-term temp job at a local University department, stationed on an upstairs floor. In an attempt to defy my disease, I would use the stairs to go up and down. Also, I lacked the patience to wait on the old elevator full of students to go up or down one floor. As it was, the exercise would be good for me anyway. Then I noticed I had increasing pain and stiffness, especially in my hips and knees. It was again becoming difficult to walk. So I saw my 2nd Rheumatologist and discussed options. Humira. He felt it would be the best option since I’d done methotrexate and plaquenil and Arava, all of which were never enough. And it worked. Humira has been my only RA treatment since the switch, in 2006. Yes, there are side effects. But all of our treatments have side effects. So why not see if it helps? The possibility of improvement was absolutely worth it to me.

Let me take you back: imagine my horror at finding out this meant having to inject myself. For some, this is a whole new level of “biologics can be scary.” The manufacturer will mention the black box warnings about lymphoma and infection risk in the advertising, but conveniently forget to show you the needle you’ll be side-eyeing as you work up the courage to inject. At the time, I could handle being stabbed in the arm by others for blood-work. But myself? First tried it with the syringe into the abdomen, while in the doctor’s office. That didn’t work out so well since: 1. It’s a syringe and 2. I don’t have much in the way of “a firm section of fat to inject the medicine into” (from Humira’s syringe instructions). I was a very reactive patient.

Ultimately, I settled on the auto-pen injection option, as that allowed me to fool myself more easily regarding needle phobia. Take one cap off. Take the other cap off. Push a button. Actually, swallow first. Brace yourself and relax your leg. Take a breath, hold it, and GO. Count slowly up to 10 or down to 1 depending on how brave you feel. If it burns, do the countdown quickly while exhaling through your teeth. Done! Slap on a dot bandage and you’re good to go. At least, until you notice some fatigue or brain fog settle in. Keep in mind that the side effects are different for everyone. For me, after 10 years, I’m used to them. I know what to expect. I know when it gets to me and I start to feel overwhelmed, that I need to remind myself that it’s just the Humira and I’ll feel better in a few days. And above all, that temporary inconvenience is worth it. Do I wish I felt far more awesome in the days after injection? Sure, but I have to remember that this treatment is working to manage a disease that has taken advantage of my body’s normal functions.

For me, Humira means injecting on a Friday evening, every other week, while allowing me to recover over the weekend. This is especially helpful since I work a full time Monday-Friday job. Now am I fully good to go by Monday? Not entirely. I usually don’t feel more myself until Tuesday. But then Mondays, especially after spending two weekend days resting, are going to be disorienting and stressful; I’ve learned to anticipate it. Usually within a couple of hours after my injection on Friday evening, I turn into a pumpkin. Brain fog and major fatigue hit and I conk right out. I call it my “Humira-coma”, if you ever see a tweet about it. Waking up the next morning…oh, who am I kidding, it’s probably nearly afternoon, involves a lot of blinking at the clock, staggering to the coffee machine, and telling myself that it’s okay as I likely needed the rest. Most Humira Saturdays, I try not to have much planned, other than usual chores, maybe get out and run an errand so that I feel useful. Also, another effect I noticed with myself, though I’ve not really ever heard it mentioned by others, is the mood shift. I’m used to them, so I expect them. There usually comes a point in the weekend where I will feel down, my mood slightly depressed. If you consider that this a treatment designed to suppress your system in some way, especially since you might not feel well after treatment, it makes sense as to why one might feel down, or overwhelmed, or more anxious for a day or two. Has anyone ever felt all that great fighting illness? No. So it’s completely normal for your body, immune system, and mood to react in response to treatment. This how my body responds each time I inject Humira. I expect it. I know it. I remind myself to just wait a couple days and I’ll feel like my usual self again.

For some, those reactions might still be too much to take. And I understand where they are coming from. For me, though, it’s been very much worth it. I can walk without pain or stiffness in my hips and knees. I can ride a bike. I can garden. I can carry heavy things. I can type fast. I can even walk fast again. Which I do, simply because I can. I can run, though I probably look funny doing so. I can bend. I can sit on the floor and not be permanently stuck there. I can make my disease completely invisible to the outside world, fooling others, at least until someone asks me why I wear gloves. Heck, I can even fool myself some days. I still experience pain, but generally at a much lower level. It tends to increase when weather turns rainy or cold or humid. Diet has no noticeable effect on my disease activity. I tried gluten free. I still had the same weather-related disease activity. Most of my activity seems to be housed in my wrists/hands/fingers. They were the first joints to flare into existence at age 15. They remain stubborn stragglers refusing to give in to defeat to this very day. I’m not sure what their exact problem is with my treatment, but it isn’t going to stop me from putting them to work despite their protests.

I still have rheumatoid arthritis. That’s my life. It’s part of me, who I am, who I know I will be tomorrow. But thanks to Humira, it’s greatly reduced from being an all over constant attack via aching, stiffness, and inflammation. I usually have aching of some kind randomly, on a lower level – which I’ve learned to ignore over the years. There’s usually not any inflammation visible to me most days. No stiffness preventing me from moving. But thanks to Fall weather entering into Ohio this week, from 90 degree summer weather to rainy and in the 60s overnight and for the rest of the week, my hands have turned a bit cranky. As I type this, I am aching from my wrists into my hands, on up through the knuckles and out through the fingers. It’s a wave of aching, with extra emphasis at certain points from the knuckles or the wrists, or the finger joints. There’s some inflammation swelling on the knuckles of my right hand, which doesn’t scare me because that hand has always been my disease’s favorite problem child. I can still bend my fingers. I can make a fist. I can type away to my heart’s content. It was supposed to be worse than this. I’ve never forgotten how I was told shortly after diagnosis that by the time I’m at my current age range, I’d likely be in a wheelchair. But I’m not. After 10 years on this treatment, I can even walk faster than most able-bodied healthy people. For me, it’s a joy to behold.

What if a biologic treatment offered you the same possibilities? What if your pain could be reduced? What if you could return to work, to hobbies, to more in life? What if you could lift your child? Heck, what if you could open that jar? You might even feel better overall. The idea of biologics and the potential risks they carry certainly might make you feel wary. But you won’t know if you don’t try out the treatments for yourself. If serious side effects result, you contact your doctor, of course. If you don’t like how it makes you feel, at least you tried, now you know, and you contact your doctor. If it didn’t help enough, perhaps a different biologic might work better for your specific disease process? But you won’t know until you open the door into your doctor’s office and ask “what if this works for me?”. Clinical remission is possible. Improved quality of life is possible. You deserve to know what lower disease activity can feel like; the possibility of better days. Are you really only afraid of the risks? Or are you afraid that things might actually improve? Or is it that you don’t know whether you can handle any more disappointment if the treatment fails? There is only one way to find out and that is by giving yourself permission to be brave and utilize biologic treatment. Reclaim your potential for health and attack your disease at its core. Honestly, if anything should be scared right now, it should be Rheumatoid Arthritis. Turn the tables round and disable it, one biologic at a time.