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Cure Worship, Illness Gratitude, & Finding the balance between
To be thankful while you are suffering is one thing, but to be thankful for suffering….
Once in a while in the support group I administrate, there is someone who makes a statement that is so powerful, it catches me off guard and it sets my soul on fire. In truth, this isn’t a rare occurrence. I guess you could say that those suffering so deeply every single moment of the day have some profound insights to share. One thing that inspires me the most is when people say they are thankful for their illness. That is a bold statement that I believe one would never come to lightly- and no one would EVER openly say something so provocative in a support group setting among a band of individuals with severe chronic diseases, unless they truly meant it. That’s why it always gives me pause whenever I hear such powerful expressions.
It’s not unusual for those who go through a near death experience or a serious short term illness to find deeper meaning and purpose. It’s no less real, but it is more common when the storms have an end, and suffering can be left behind. While it’s not rare for those with ongoing illness to eventually find new ways to appreciate life again, to say they are grateful for their illness, it is so much more rare in cases of chronic disease. Why? Because an illness that is daily, constant, and does not see an end- is far easier to hate than to get excited about. A condition which may be degenerative, becoming more painful and physically or mentally compromising over time, isn’t easily beloved…as you can imagine. To me, it’s almost a miracle hearing that anyone would be happy or thankful that they became so sick. Others with chronic illness can find statements like these offensive, even. These ideas of “illness gratitude” certainly border on the extreme, but make one wonder where their personal journeys have lead them to truly embrace their infirmities.
I’ve heard people claim to be thankful they are in pain and chronically ill because it transformed their lives. It made them see the world in a different light. Their conditions allowed them to shake off the clutter and stress of a life that they realized didn’t have substance, and focus on a life of greater meaning and value. They once believed losing their career meant losing their purpose, but I’ve spoken to those who say that they are so thankful they became ill because now they found their true calling. Some have said that their new life of chronic illness has enabled them to be there for people in ways they never could have in their “healthy” life, so they are forever thankful for their new sick bodies, and how useful they can be to others through deeper compassion and connection. Sometimes people are grateful they are in pain because it has brought them closer to their faith, and they cherish a higher spiritual connection they never could have had without constantly being pushed to the edge of what they can endure. They are forced to cling to God instead of their own strength, and in that comfort, they find gratitude for suffering that brought them more enrichment spiritually.
Again, these are extreme statements, but thought provoking and inspiring nonetheless!
Most often, people I encounter long for a cure or pray to be healed. That’s normal, and that’s not at all unhealthy. Research in psychology equates the loss of health or a limb to losing a family member or spouse passing away. It’s earth-shattering. The losses just keep coming. With chronic illness, the grief starts over again and again. It’s cavernous, and there’s no end to the emotional roller coaster or the physical fight. Hoping for a cure, for healing, or for remission is what we all are desperate for, and that focus can at times become crucial for survival. But for some of us, restoration of health becomes a worship in itself, and begins to supersede everything else. Seeking a cure or healing can become such a focus that illness becomes nothing but a betrayal of God, of government, of doctors, and family. Nothing feels real except wellness and full restoration.
Obviously these are 2 opposite sides of the spectrum, and balance is always the goal.
When I was diagnosed at 22, I spent the first years asking God WHY? Staying up every night in excruciating pain, my leg felt as though it was breaking, nerves like being electrocuted and burning pain like nothing I could have ever imagined before. Full body spasms, tremors, the room spinning, my heart racing and palpitating, wondering how I had planned and worked so hard for everything that had lead me here, just to lose it to this “incurable degenerative” condition that no one seemed to be taking very seriously to help me try recover from. It didn’t make any sense. As much as I tried to analyze it, I couldn’t crack the code. It only made sense for me to get better, so I searched for my panacea, and prayed (demanding) that God must heal me. At the time, I wasn’t a big prayer person, but illness has a way of connecting you to your higher power. In the Bible, yes, there is healing, but there is also so much pain. The importance of learning through pain, finding ways to share strength or comfort inside of infirmities, these are scriptures that have been so encouraging to me.
I eventually felt lead to make a decision. I believed God would heal me, and I still do believe that is true. But, I decided that if I was going to spend any period of time living a “sick life” I was going to explore it. As much as I was desperate to go back in time, moving forward is all I could do, it’s all any of us can do- Even if it’s slowly, frightened, and with tears in our eyes.
I cannot go as far as saying that I am thankful I am chronically ill. I can say that at almost 12 years, I’m so grateful I made that decision to press forward and try to find myself inside of this life. If I had stayed so distracted by my past, or so focused on what I might be losing in the future, I would have missed every bit of the beauty, the miracles, the blessings, the generosity of others, the opportunities to be of use, and purpose found inside of this pain.
*****
More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5
I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:10
For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18
When the cares of my heart are many, your consolations cheer my soul. Psalm 94:19
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The Dream #SickLivesMatter
After sharing the original Sick Lives Matter, I’ve been surprised and grateful for the response of the piece! However in response, some said, it’s too late for change. Some responded that we are too far down this path of patient neglect in healthcare, and there is no returning from it now. But I believe it is just the right time for us to rise up. I’m not alone either, with online patient forums like Patients Not Addicts gathering to influence legislation in Washington DC, advocacy groups like Give Pain a Voice, pain organizations working to change the stigma of pain patients, and so many private individuals sharing their stories wherever the universe allows, we ARE in the middle of a revolution. Are you part of it?
How can we rise up when so many of us can’t even work? How are we supposed to change policy when doctors and family don’t seem to listen? How can we make an impact on the future when many of us are struggling to care for ourselves? These are the reasons we HAVE to do something about it.
Consider cancer patients. In the last 10-15 years, the treatment of cancer has turned around because cancer patients joined together and created a movement. Everyone knows Susan G. Komen represents Breast Cancer Awareness because hard working cancer patients were able to get big organizations to stand behind their cause. Years ago, minorities with cancer were being ignored, rare cancers were going undetected, and people were terrified of finding out they could have any form of cancer because there were so few options- and you were likely too late anyway. Now, we have cancer treatment centers popping up all over the country, treatments that are actually successful at sending cancer into remission, and celebrities who bravely share their cancer experiences with the public.
Consider HIV/AIDS. As recently as 15 years ago, HIV was still a death sentence. Celebrities may have been wearing red ribbons, but people were still dying so quickly, suffering in silence, and had little recourse. Not only did society brush off the disease as a punishment- so did healthcare professionals (#STIGMA). Now, not only is there awareness, there is a culture of S.T.D. prevention and regular testing. When the worst happens, and someone is diagnosed, life is not over, people are living long lives because they have treatment and accessible management. Educated HIV doctors aren’t rare, and medication is becoming more affordable (although there is still a ways to go in regard to RX coverage).
HIV patients knew something about being brushed under the rug of society and healthcare, and paying for it with their lives. They changed the game by telling their personal stories so that those who tried could not look away! They joined together for a united cause, and chronic illness survivors can look to their bravery for inspiration.
I dream of emergency rooms where doctors and nurses treat chronic pain patient’s emergencies as high priority as everyone else’s. I see a future of chronic disease treatment centers around the country. I envision home visit physicians covered by insurance. I imagine the homebound and bedbound having access to quality patient care and mental health care from home, covered by insurance. I pray for research facilities searching for a vaccine to end degenerative neurological pain diseases. I see a world in which sudden deaths from unmanaged pain, and suicides from under-managed pain are a heartbreaking thing of the past. Is under-treated chronic illness a sign of the end times we are meant to accept with apathy, or is there something we can do from our sick beds and wheelchairs to make a change? We can be the ones who flipped the script for future chronic patients, young and old. This can be the moment you decided to take a stand. What is your dream?
Your life matters. Your story matters. Your voice matters.
#SickLivesMatter
To share your story or to learn how you can get involved in advocacy online, email abodyofhope@inbox.com
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My Anesthesia Nightmare by Nikki Fortner
I have had many fearful adventures during my journey struggling with RSD/CRPS. Let me start off at the beginning…
Please help me welcome our guest writer today, Nikki Fortner!
Possible trigger warning to our readers.
I was diagnosed with RSD when I was 14 yrs old. I am now 16 going on 17. From the very start, I feared many things. I was scared I wasn’t fixable, I was afraid of what was going to happen to me, most of all I was terrified how my mom was handling it and I couldn’t help her and she couldn’t help me. After her fighting for 2 to 3 years with 5+ doctors to get a correct diagnosis we finally received one in June of 2014. The day we found out the diagnoses (of Complex Regional Pain Syndrome) a lot of emotions filled my mind and body. I was happy because we finally knew what it was that was causing me such horrible pain but I was scared because there wasn’t a cure for it. The doctor I see currently has honestly been the best doctor I could have asked for.
However, things turned the wrong direction on December 14, 2015. I was walking on a sidewalk and stepped into a hole and broke my ankle where the RSD is located. I was put in a cast for 8 weeks. During this time my RSD pain honestly wasn’t bad at all I was just scared of what would happen when I came out of the cast.
Here we are, present day two days after my recent nerve block and my scariest experience in my life yet. April 4, 2016, nerve block number 3. From the moment we walked in the door that day I knew something was off all around.
My normal lady who does my IV didn’t that day. The lady that did do it, however, messed up bad. When she put the IV in, blood went everywhere and she said it would be fine, but it wasn’t. My arm was burning and I just knew something wasn’t right. I got really scared and I looked at my mom and said, “I’m scared” and she said. “everything is going to be ok” and that when I freaked out and started crying again. I told my regular nurse and she came over and re-did the IV in my other arm and everything was okay after that. They took me back to the O.R and even back there I had this weird vibe. So it went on anyways, I thought it was just me.
My doctor did the time out and then gave me the anesthesia. He gave me one and realized it wasn’t enough because I was still awake. He gave me another dosage and that still wasn’t enough, so he hit me with one more and that knocked me out- hard. The procedure went on but this time, a medication was added to my nerve block to make it better and last longer. When I was trying to wake up something still didn’t feel right I didn’t feel like I normally do when waking up from anesthesia. It took me way longer than normal and by the time they wanted to discharge me I still felt dizzy and sick. We got the paperwork and we left.
The whole way home I slept which I normally don’t do until I get home. When we got home and I went to go to the restroom, everything went downhill from that instant I sat down…. all of a sudden I felt very sick to my stomach and dizzy. Thankfully, my mom was downstairs, but before I could even yell to have her come help me, everything went black, and I passed out for a good 10 minutes. My head slammed against our bathtub. Half my body was in the tub and the other half was out.
The next thing I knew I heard my mom screaming and I had literally 9 paramedics overtop of me sticking me, and poking me, and running tests until I woke up and threw up all over my mom (sorry for the detail). I was taken to the hospital by my house via ambulance where they ran more tests and determined it was too much anesthesia. They pumped 3 bags of fluids in me and sent me home.
Since then I have been fine and feeling better but that honestly had to be a terrifying experience of not only my RSD/ CRPS journey but my entire life as well. I’m so thankful to have people by my side during this journey as well, so thank you Nettie Moneski my mom, Noah Herman my boyfriend, Michelle Craig Hoyt a good family friend, Jimmy Shanks, my grandfather and grandmother, Amelia Catherine Gish my best friend, and to everyone else, thank you guys so much, I couldn’t go through this without you guys!! Love you guys so much!!
-written by RSD survivor, Nikki Fortner, age 16
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Sick Lives Matter
I was messaging with my therapist recently, frustrated with the challenge of trying to find a treating pain management specialist under my new insurance. Sharing with her how angry I’ve been in recent years after being brushed aside by more than a dozen physicians I’ve looked to for help (messaging because speaking on the phone or seeing my therapist in person is out of the question for me). She rationally offered advice like, “Did you ask your last doctor for a referral for a new pain doctor?” And, “Have you tried seeing any specialists for your conditions? Why are you in so much pain? How about taking more pain medication? No one should be suffering like you are.”
Why did her rational, reasonable solutions make me want to scream?! Maybe because after over a decade of chronic illness, I know that her innocent view of medical care is like the ABC’s and I’m working off of XYZ, but the issues we face concerning our health care should not be so complicated. We are ill, and so many of us aren’t able to go so far out of our way to find help. It really should be so much more simple to find a good treating doctor. And when it isn’t, we fall through the cracks. We get worse. And the worse we get, the worse we get.
When doctors are knowledgeable about your condition and how to offer solutions, they will. When the options available are helping you manage, and the practice is making money off of the treatments offered, everyone is content. However, if your condition happens to worsen outside of the doctor’s comfort level, you might find yourself in a pickle. Your records show that you’ve tried so many different treatments for condition A, however because you now have conditons A#%@, other practices are less willing to see you. You wear a scarlet letter “C” on your records for COMPLEX, and from then on, you seem to be tucked into the bottom drawer of society.
This is happening to so many patients across the country. The new CDC guidelines didn’t help by limiting pain medication for chronic pain management, and neither did Obamacare. But, this is not a new problem and cannot be solely blamed on new government protocols, even if the current “solutions” have only pushed those of us with serious ongoing health needs further under society’s invisible rug- making us more invisible. Who sees to our care when we become “more complex?” As it stands, the more simple your case= the better your care. The more complex, rare, or worse off you are= the worse off your care is likely to become.
People who could have fully recovered and started back to work if they had been deemed worthy of attention earlier on, instead, further decline physically, mentally, and economically, and into a state of no return, forcing more and more people onto disability and social security- a status which statistically is difficult to recover from once you start.
#sicklivesmatter
Meet Kayla. Kayla is near middle aged and was diagnosed just after her symptoms began. She was set up with a team of specialists by her Primary Care Doctor. Kayla has had to change her life around since her diagnosis and feels so much loss for the things she once loved to do. She wishes there were a cure, but seeing her doctors regularly and trying new treatments reminds her there is hope. She is managing her condition by resting at home much of the time and has been able to continue mothering and finding support in her husband. She continues to work only part time now, and in her rest/recovery time, she has started to do what she always wanted to…write a book.
Meet Jonathan. Jonathan is in his 20’s and saw several specialists soon after his symptoms began, but no diagnosis was made. He spent years asking various doctors what might be wrong, but he was told he seemed young and healthy and the few tests they ran came back normal. Over time, his health so interfered with his work that he lost his job. His wife thought he might be faking his disorder to get out of his responsibilities and eventually left him, taking the their newborn. He couldn’t pay the bills any longer and lost the home. Finally, after years of illness, Jonathan is diagnosed, but his original condition left untreated for so long has caused a few other complications which are likely now permanent. With his diagnosis, he can now apply for disability, but he will likely never be able to work again or get back on his feet- financially or physically.
#SickLivesMatter
You can see in the best case scenario, how much hope a good doctor can offer. Even in Kayla’s case, everything changes, and we need the help of reliable physicians because we can’t do it on our own.
I can tell you that this happens to those with money, those with the best private insurance, this happens to those lucky enough to have family who can advocate for us, it happens to those who can advocate for themselves, it’s happening to the young and old, it happens to those with government insurance, it happens to people who can’t afford the special doctors, and it is especially happening to people whose health suddenly takes a sharp turn so that they can no longer advocate on their own behalf. People are slipping through the cracks, and there are more of us with chronic illnesses and rare diseases now than ever before!
You think it’s the emergency of your life, and you always imagine doctors being there for just this time, but you are made to feel that a chronically ill person’s emergencies aren’t quite as worth while. Slowly but surely, like a Polaroid picture’s image emerges, you get the picture that your life isn’t worth while either. Many people like myself won’t even call an ambulance if they believe it’s a life or death emergency. We’ve been down the hospital road too many times, and believe from experience that there is no hope in that big white building- not for so many…too many of us.
If they keep tucking the sickest people away in the bottom drawer of society, if they keep us under wraps, if they don’t allow us the medication and doctors we need to survive, and if they continue to legalize euthanasia in the U.S., then maybe we’ll all just disappear, and leave them alone, right?
Wrong! They aren’t shutting us down, they’re starving us out!
We might not be able to picket the CDC, or storm the halls of Congress, or hold a sit-in demonstration inside of a hospital building, but social media can’t contain us. We can write our senators, make videos, sound clips, share our stories on Facebook, become ambassadors for rare disease foundations, get involved with patient advocacy groups online, or guest write for blogs from our couches, wheelchairs and hospital beds. Maybe we can’t go on the walks to raise money for a cure, but we can help organize them! And don’t forget, our stories are the most powerful weapons we have to make change.
You are the same person you always were; your health changing is not your fault. Your worth is not defined by how well your legs work, or if you were able to eat something solid this month, or if a doctor deems your medical file “worthy” by looking at the papers inside. You are not your file. And I know I’ve caught some slack for saying this- but you are not your body either. You may not be able to scream, but we need your voice! Your story is unique, and will inspire someone else to keep going, and move another to vote differently. Even though it’s not your job to be an inspiration… you already are. You matter.
#SICKLIVESMATTER
Email abodyofhope@inbox.com if you would like to share your story or to ask how you can get involved with advocacy programs online.
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Gift Ideas for people with Dysautonomia, POTS, and CFS
If you’re buying for a loved one with a chronic illness this holiday season, I have you covered with these gift suggestions, links, gadgets and creative ideas to help you find the perfect present especially for them!
*Starred items are sold by disabled entrepreneurs.
Those of us with chronic conditions tend to have extreme dry skin. Personally, I also have extra sensitive skin (because I hit the genetic jackpot). A deep moisturizing product with collagen or an anti-aging night mask helps soak into that dehydrated skin. Mary Kay’s Extra Emollient Night Cream at only $14, has been a top seller for decades. My mother used it from the time I was a little girl and she has always had beautiful skin. My sister and I love it, so it’s definitely one of those heirloom products you pass down through generations. Now I’m passing it on to you! I recently heard a woman in a chronic illness support group suggest that this cream works better than antibiotic ointment for healing her sores caused by autoimmune disease. I wish I could give a bit of this to everyone suffering from chronic dry skin.
Medical Alert Italian Charm Bracelet Gadow Jewelry
I’ve been scouting medical alert bracelets, and these are my top picks specifically for those of us with multiple conditions, rare diseases, or complex health needs.
These fabulous medical ID Italian charm bracelets are available on Gadow jewelry, Ebay, and Etsy for between $20-$40. The individual links are sold separately, and I love that they can be custom ordered. If you want to add a new diagnosis, or take a medication off, links can be added or.removed easily. If you lose or gain weight, they can be easily adjusted by adding or removing a couple links. I also love the idea that you can mix your serious seizure condition alert charm next to a sparkly pink unicorn charm just for funzies 😁 As far as EMT paramedics go, in an emergency, they’re more likely to look for an alert bracelet rather than searching for a necklace, key chain, or wallet card, etc.
The new tech trend in medical info/alert jewelry is sporting a hidden USB in your bling. If you have ever been at the ER, urgent care, or doctor appointment when you couldn’t advocate for yourself, then you might see the benefits of medical USB jewelry. This technology is available in a broad range of styles from bracelets, key chains, necklaces at every price point.
One thing I learned when I entered the POTS world is that they have the lockdown on health technology! Since you can get a quick-read blood pressure cuff at any drug store, I’m going to try and kick it up a notch here.
Today, smart watches can read heartrate, blood pressure, and blood oxygen level, along with tracking steps, distance, calories burned and has a sleep companion which all syncs with your mobile. It comes in Dysautonomia blue as well as black; price range on Amazon, $93-$250. If this works as well as the company claims, that is one heck of a Dysautonomiac invention!
I learned Biofeedback 11 years ago to help me manage pain, stress and sleep. Four years ago, when all the crazy Dysautonomia and POTS symptoms undid my body, I started whipping out my Biofeedback techniques like my life depended on it (well, it has). Learning to have better control over typically automatic responses like breathing, heart rate, blood flow, circulation, and blood pressure are very challenging, but can be so helpful in conditions affecting the heart, nervous system, or in conditions which interrupt sleep.
This amazing Biofeedback and Neurofeedback smart phone app was made by a little known group you might know called THE US DEPARTMENT OF DEFENSE! The app can monitor respiratory rate, skin responses, temperature changes, as well as brain waves. Check out more about this FREE app here at Neurogadget.com which includes links to purchase the biosensor devices for your smart phone. Good job, America!
I can’t say enough about compression socks. And now, they are finally cute! You can even find printed compression leggings. They help us keep the “blood pooling” or edema to a minimum by encouraging circulation. Compression stockings displace blood from the lower extremities and squeeze it into the upper body where we are desperately lacking. It also lowers vascular issues in the legs and helps prevent strokes. This is one pair of socks that earn their keep! Check more cute compression socks links here on my last gift guide for people with Chronic Pain.
Gourmet Salt Sampler
If you know someone with Dysautonomia, POTS, or Hypotension, then you know we are a little obsessed with our salt intake to raise our blood pressure. For the holidays, turn your loved one into a connoisseur of specialty salts by allowing them to sample 6 different types of sea salts from around the world. Purchase through Amazon, made by The Spice Lab, for only $29.95. They arrive in a wooden stand, nestled in a kraft gift box. Or, spice up your loved one’s pallet with specialty seasoned salts. SaltWorks.com creates 5 unique salt blends like Merlot salt and black truffle salt in their Fusion Flavored Salt Sampler, $26.95. Mmmm, pardon my drool!
Fellow Dysautonomia fighter and advocate, Suzanne Stewart makes fabulous custom awareness jewelry to your desire. A portion of her earnings go to help chronic illness organizations because her rapidly beating, pace-maker equipped heart is also full and generous! Take a look at her website, *Support in Jewerly, and order something pretty for the chronic diva in your life.
Dr. Lam, a leading expert on Dysautonomia, has developed Tai Chi for Rehabilitation, $24.95. I first learned about Tai Chi for Dysautonomia from POTS and chronic pain blogger, Elle and the Auto Gnome who attributes Dr. Lam’s Tai Chi in part for her improvement. The DVD’s can be adapted to a sitting position or even (as I’m learning) a flat position, thanks to my cardiac rehab therapist. [If you give a gift of “healing” to a friend with a chronic illness, it’s best to include it in addition to her main gift. Otherwise, it may send a negative message to us that we aren’t doing enough for our health in your eyes.]
Artist, Sarah Allegra has developed this magical *2016 Calendar with Red Bubble, depicting her favorite images. Sarah Allegra is not only a provoking photographer, she also suffers from Chronic Fatigue Syndrome/ME/SEID which always influences her art. She is an activist, raising awareness through her blog, Mythic Pictures, as well as through her expressive images which speak volumes. If your loved one has severe fatigue associated with her disorder, often artwork can say so much more than words.
“It’s like 10,000 Knives when all you need is a Spoon” *Awareness Tee’s on Zazzle.com
Other awesome gift ideas include: a nice juicer/blender $30-$200, electric toothbrush $5-$200, Funny original Awareness tops $20-$30 on Zazzle and Cafepress, Whole Foods gift card, Amazon gift card, vitamin shop gift card, massage gift certificate, electrolyte drink drops, or ear plugs.
As you are shopping for your friend, consider that she has to lay down A LOT due to chronic daily fatigue and because of many other symptoms causing falling or potentially fainting when she tries to get up and around. Anything cozy, things she can do laying down, and compact items she can keep near her bedside are all ways to play the chronic shopping game. Thank you for playing! Most of all, your solid presence in your loved one’s life is already a win as far as they are concerned. Just so you know, you are the best! Thank you for visiting,
Happy Holidays!
Find out what my gift-giving NO NO’s are when shopping for your chronically ill/ disabled loved one here.
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Gift Ideas for a Chronic Pain Warrior
This gift guide is full of links to unique items to help you shop for your young, eclectic friend who just so happens to have Chronic Pain. *Starred shops are run by entrepreneurs with chronic pain.
Socks
When I asked my friends with chronic pain what they’d really love for the holidays, they said SOCKS PLEASE! The catch? Most of us have finicky feet and like our socks to be just right. Here are some of the fancy sock suggestions straight from chronic pain fighters:
Compression Socks by Support Plus
Smartwool.com has attractive and high quality over-knee socks and knee socks for women.
World’s Softest Socks by Hanes has a nice selection of extra soft and comfy socks and slippers that come highly recommended by the owner of very sensitive feet. See Footsmart for in-store shopping.
Heat Holders come in thermal socks for both men and women, tights, and thermal leggings. If your loved one always has cold feet, these might be their new favorite sock!
Compression Socks are my personal fave for my own picky (angry, control-freak) feet. I love a toe-less compression garment like this thigh high version from Truform on Amazon. Today, you can also find fun printed compression socks, like the mild compression socks from SupportPlus as pictured above. Compression socks help with circulation, swelling, and sensitivity, however keep in mind, not everyone can tolerate wearing tight socks.
Armwear
For those who have chronic pain in the upper extremities, supportive arm and hand gear can be difficult to find. Period. Throw in the need for protective cold weather wear and add the desire for attractive pieces that fit your loved ones personality…you get the idea. Unlike easy-to-hide protective legwear and therapeutic socks, the arms and hands are not as easy to disguise. Here are a few gift ideas and shops to help you find a protective garment that your loved one would be proud to sport.
These super soft Cashmere Fingerless Gloves/Arm Warmers by Blumen Kinder Seattle on Etsy are fitted, to the elbow (or over), and are available in multiple colors. These were another item my friends said they are hoping they receive for Christmas. I can’t think of anything softer or more luxurious than cashmere…. (Sorry, that was just me luxuriating.)
What about the boys? I scoured the internet looking for men’s long cashmere fingerless gloves/arm warmers and found them at Turtle Doves in the UK as well as the Etsy shop Lain Design in 100% soft gray cashmere! You’re welcome guys.
For those who prefer the protection and swelling control of compression wear for their arms, check out the shop Lymph Divas on Amazon. They make original tattoo-design compression sleeves for women that everyone will envy.
This full length compression sleeve from Juzo is advertised as “extremely soft against the skin.” Made from silicon, it conforms to the skin and moves with it, adding a thin layer of protection and light compression. It comes in various tones including chocolate brown and light beige.
Books
In my last gift guide, I advised shoppers to steer clear of books that tell people with any illness how they can become well again or heal. On the flip side, there are excellent books to read for LIVING with chronic pain, managing the symptoms, and coping with emotions and relationships in the new changing body.
Author/Poet Mary Jane Gonzales is a long-time chronic pain fighter and advocate for chronic pain awareness. She has published several soulful books related to living with pain; my personal favorite (thus far) is *Poetic Devotions for those in Pain, which touches at the heart of life with painful degenerative illness, loss, relationships, and connecting to personal faith in the midst of struggle. After reading, I shared this ebook with several friends, not all of whom had chronic pain and they also loved it and related to it. Available on PDF ebook and Nook.
In 2013, Cynthia Toussaint of ForGrace.org and Women in Pain foundation wrote her inspiring memoir, *Battle for Grace. For more than a decade, Toussaint has been an activist for the rights of people with chronic pain after her own life as a professional ballet dancer was changed forever. Read about her long time relationship with her partner, the loss of her body, and how she found new purpose and passion through her bewildering conditions, including CRPS. Available in paperback and ebook.
The Measure of our Days and The Anatomy of Hope are not books about Chronic Pain, however I wanted to include them here as gift ideas. They made an impact on me in the first years after my diagnosis and I have never forgotten them. Multiple, real life, patient-centered stories depicting how people find hope in the face of rare and terminal conditions might speak to you or your loved one as they spoke to me over 11 years ago.
Or, give your loved one a gift card so they can download the ebooks on their wish list. Visit this page for a comprehensive list of books from the American Chronic Pain Association.
Distraction Therapy Gifts
Art Journal Courage: Kohl’s
What most people call “hobbies,” people with chronic pain call “distraction techniques.” These are captivating projects which don’t take too much physical endurance but help us busy our minds and hands as a method to fight against pain overtaking us. Creative art projects, crafting, playing video games, playing musical instruments, doing puzzles, board games, cooking, digital editing, and coloring or painting in adult coloring books are some of the ways in which we might distract ourselves from pain.
Recently, scrapbooking and journaling merged to create a new trend in beautiful artistic journals. People can document their lives by incorporating writing, painting, drawing, photos, and collage. If you know someone who might be interested in a project like this, pick up a Smash Book at a Kohl’s or Wal Mart.
Comfort Items
Since we have to spend a great deal of time at home resting and recovering, comfort is key! Think about the coziest, softest thing you’d like to snuggle up with, and that’s a great place to start shopping. I prefer vibrant colors in my room and faux fur anywhere my hands wander.
Check out this Blanket Foot Tent at Sears for $22. If the touch of the linens keep your loved one awake at night like many of us with Allodynia (pain to touch), this awesome tool might help your loved one get some added zzz’s.
On the flip side, a weighted blanket might solve their “comforter anxiety” as my friends and I like to call it. These blankets will stay put and are known to reduce anxiety and increase Serotonin by adding gentle weighted pressure. They are also made with very soft fibers which are attractive to anyone with chronic pain. Find a wide selection of colors at the brand new shop, *Comfort Hugs on Etsy.
There are so many wedges for the bed. Some go underneath our legs, to prop our legs up, special pillows to rest between our knees. We have wedges for our backs, and piles of pillows we shift all around to try to get comfortable. It’s difficult to suggest one kind of wedge or pillow that might add to your loved one’s comfort. However… a giant teddy bear might be a great and unexpected fill-in, and a really comforting and sweet gift, too!
Therapeutic
In my last gift list, I noted the wonderful benefits of epsom salt baths for aches, pains, and spams. However, bath soaks are not possible for everyone with chronic pain conditions, unfortunately. This unscented Epsom Salt lotion from Morton Salt allows for your loved one to get the benefits of Epsom without the need to get in and out of a hot tub of water. It is available at Wal Mart and Walgreens for about $8.
Guided Meditations for Chronic Pain on audio is a nice add-on item or stocking stuffer for anyone with pain. Stay clear of the ones that claim to “cure.” Instead, look for guided meditations, mindfulness, or visualizations aimed to help “manage” or “cope” with chronic pain. Mindful Meditations for Pain Relief has excellent reviews online by pain patients. Though I have never tried this particular audio book myself, I do utilize mindfulness and meditation as a coping strategy for my own pain.
If you spend a little time digging, you can find some of the coolest adapted walking aids! The flames cane featured above is from the shop, Fashionable Canes which was made popular after replicating Doctor House’s canes. Similarly, the shop Cast Coverz has a wide selection of fun and eclectic crutch covers and walker covers to reflect your loved one’s personal style.
These items might seem silly, but personal hygiene is one of the most frustrating and tiring parts of the day with chronic pain. Here are a few personal care items meant to help reduce the strain and pain of getting ready. If your loved one has trouble with her hands or arms, this EZ Comb is not only easy to put in, it’s simply a great hair accessory! It does the same work as clips, ponytail holders, and fancy hair combs, but one adjustable hair piece does all the work. If holding a hair dryer and comb is a daunting task, this wild-looking contraption might help her get ready with less pain. If this Soft Hood Bonnet seems too extreme, there are also hair dryer holders available to install. What about a spinning, heated, blowing hairbrush by John Freda? It seems like a must for anyone who has pain or weakness in one arm/hand.
Awareness
Zazzle.com/MixyPixie Awareness Tees
If it comes with a ribbon, shares information about your loved one’s condition, or encourages your loved one, then it falls under the category of “awareness.” They are everywhere these days, and many shops will even customize an item with your particular ribbon color (if you ask nicely).
The Etsy shop, *Tea Bag Embroidery creates sweet little awareness satchels for carrying medication and cell phone. With messages like “Fibro Hope” and “RSD Sucks,” these are truly functional items which spread awareness wherever you go.
There is an array of t-shirts and sweat shirts with awareness ribbons and funny sayings to choose from. Big online stores like Zazzle and Cafepress have a huge selection of awareness apparel, mugs, cell phone covers, etc. with original designs by various sellers. My own shop on *Zazzle.com is pictured above and donates a portion of its proceeds to RSDS.org.
I also wanted to share this new collection of “empathy” cards from *Emily McDowell. If you have never known just the perfect thing to say to your friend struggling with a serious illness, but you want them to know you always have their back, these cards are funny, sweet, beautiful, and say it all. Like this one:
EmilyMcDowell.com Empathy Cards
No matter what you decide to give to your loved one with chronic pain, your support and un-moving presence in their lives is immeasurable to them. Your friendship is a gift!
To see funny chronic illness gifts and fantastic adaptive tools to help your loved one around the house, visit my Pinterest boards: Spoonie Gifts and PJ Chic. Read my last gift guide here for gift do’s and don’ts when shopping for your Chronic pals. Thank you for visiting,
Happy Holidays!
aBodyofHope 