For those who purchase a regular supply of vitamins & herbals, I recently found a couple affordable sources to share with you.
For the record, I have no connection with these companies other than being a shopper. I simply wanted to write a review in case it could help others save money, as the cost of non-prescription “meds” can add up so quickly every month!
I’m sure you’ve noticed that Amazon’s prices have been steadily increasing, while quality seems to be declining. That’s discouraging those of us who relied on Amazon’s prices to beat the cost of drug store supplements, and we’re turning to other sources once again. Amazon’s healthcare department has become so competitive that sellers can raise their prices, and they have! Because the sale of vitamins and herbal supplements aren’t monitored by the FDA like milk and eggs are, we place our trust in vitamin companies every time we purchase a health product. I dare to guess that we’ve all been disappointed from time to time in online supplement shopping.Amazon’s ease of use from home, good selection, access to comparable customer reviews, low price, and fast delivery has made it simple to stock up on necessities. (Let’s make these our quality standards for reviewing the below shops.)
Even if “old faithful” isn’t on their game, we still have to take our medicine. What’s a girl to do?
Initially, I found these shops when I was in search of the elusive Vitamin C at the start of Corona. Then, when Amazon stopped carrying my brand of Chlorophyll, I happily found it at the same site I found the Vitamin C. More recently, when researching a vegetarian D3, the result brought me to yet another discount vitamin store. I feel as though I’ve found 2 precious unicorns among a large sea of very expensive, high-end, specialty horses. I don’t need specialty supplements with a high price tag, fancy packaging and brand recognition. I just need the basics, consistently.
In the last year, I’ve ordered from these shops more than once, and have also communicated with their customer service. I’ve ordered my usual supplies, and have tried new items as well. Because of my experience, however brief, I hope it’s enough to give you a rundown of what you can expect.
Swanson has an expansive selection of supplements, and plenty of options to choose from. Every day they seem to be running a new sale, but the recurring sale I notice most often is the BOGO on their own house brand products.
Swanson has plenty of customer reviews to ponder, for those of us addicted to reading customer reviews before buying.
I learned that their own label, Swanson Epic Pro Full Spectrum Probiotics at $10/bottle was apparently such superior quality that when the bottle ran out, GNC’s associate read the label and told my caregiver that they didn’t have anything as good to replace it! I attempted to try the best GNC probiotic, but I will be continuing with Swanson’s Epic Pro for my gut’s needs.
On the other hand, Twenty-first Century is a brand of vitamins Swanson sells on their site, around only $3 per bottle. It’s one of the least expensive brands I found among the broad range of prices. I’m trying the Potassium, so it’s hard to tell one way or another, but it definitely doesn’t seem as potent as my last bottle of drug store brand Potassium. I haven’t gone back for more of their Twenty First Century brand.
Something new I found on Swanson that I’m very happy with is their Vitamin C with Rose Hips. Vitamin C has always caused me issues, no matter what brand. From stomach upset, heartburn, mouth sores, and that characteristic bright yellow urine, I tend to avoid taking it even though it’s supposed to be so good for those of us with CRPS.
At the start of Corona, when all the Vitamin C (and toilet paper) on the planet was sold out, Swanson’s C with Rose hips was the only vitamin C to be found. (Rose hips have naturally occurring Vitamin C which is why rose is such a common ingredient in skin care). Reluctantly, I picked up a bottle, certain that the rose would cause a bad reaction. It was inexpensive after all, so no harm done if it didn’t work out. That’s the supplements game we play after all! However, none of the nasty vitamin C effects occurred, and to my surprise, no reaction to the rose hips occurred either! I know it’s potent however, because I could tell a difference in my skin after taking it for a couple weeks.They also carry my life-saving, blood building supplement Chlorophyll, which is becoming harder to find in the brand I take at an affordable price. I was so thankful to find it!
To be honest, I have hit a few snags with my orders and shipments. I’m sure Covid is playing a role in this, but ordering hasn’t always gone as smoothly as one would expect, and the packages are slow to arrive. (I must admit, you do get spoiled by Amazon’s 2-day shipping.) Customer service’s email department seemed to be completely automated, likely thanks to Covid. They did rectify the issue promptly, however. From ordering to arrival, Swanson takes about one full week.
-Ease of website ✔
-Customer reviews ✔
-Customer Service ✖✔
-Quality✔✖ (just like anything, don’t go with the lowest priced brand and it will be fine)
Piping Rock finishes just behind Swanson. Along with supplements, they also sell essential oils, natural hair & body products, and they have a sweet selection of snacks such as dried fruit and nuts.
Last week I ordered my first package of snacks from Piping Rock, and was so pleased at the large quantity for the cost! If I had purchased that amount of dried fruit from the grocery store, it would’ve cost me 3x more.
Looking through their offerings, they seem intent on keeping things simple and natural. It reminds me of my local herb shop, only it’s a web-shop.
In my snack pack, everything was great, however one of the products wasn’t what I expected based on their description. It was a sweetened dried fruit, and I wasn’t able to eat it.
The day after I left the review for the sweetened fruit on their website, an email appeared with a receipt for a full refund of the item I wasn’t satisfied with!
I was shocked.
They saw my review, and took the initiative to issue me a refund!
They certainly did not have to, but that single act of customer service will draw me back to shop at Piping Rock again, knowing they will take care of any problems I have.They have a smaller selection than either Amazon or Swanson, but they aren’t selling a variety of brands. Instead, Piping Rock lists their own in-house brand only.
I cross-checked my staple supplements between Piping Rock and Swanson, and the prices are about the same at both shops.
Just like Swanson, Piping Rock is also American owned and their headquarters are here. If Amazon’s international seller base is a concern for you, then you can rest easy knowing that Piping Rock and Swanson are both US operated. They both formulate their house-brand supplements at their own labs, and ship to customers from their own headquarters. (Neither ship outside the US, however. Sorry to my international friends.)
Apparently, Piping Rock’s owners also began the successful drug store supplement brand, Nature’s Bounty, which was a cool tid bit to unearth. I just stumbled on that little nugget today!
Their in-house vitamins boast to be on par with their original brand Nature’s Bounty, only more cost effective and accessible to just about anyone’s budget.
Here’s the breakdown for Piping Rock. In the instance of quality, there have been hits and misses, both in the supplement department as well as snacks which is why it’s reflected as 50/50. On the bright side, they will make sure you’re satisfied, and they have far more than just supplements.
-Ease of website ✔
-Customer reviews ✔
If you’re like me and have a supplement haul every month, then you look for savings wherever you can find it. If Swanson or Piping Rock have an equivalent swap out that costs you less, then that’s a win!
Swanson has a HUGE supply of supplements and herbals from a wide variety of brands, and Piping Rock has a prolific affordable Natural Health shop- which happens to include vitamins. If you like using natural shampoo, face cream, organic soap, cooking oils, etc., then definitely check out Piping Rock. I continue to do most of my supplement shopping on Swanson Vitamins for now.
I hope this helps you, and please let me know where you purchase your supplements!
If you’re interested to see what my full list of supplements and herbs are, and how they each help me, let me know by dropping a comment down below.
Happy Holidays! I hope this finds you feeling well and looking forward to many healthy tomorrows 🧡
That’s a common greeting between those of us in the chronic illness community, but after the year the world has experienced, I’m happy to share the same well wishes with every single one of you, with a chronic disease and without.
If you’re shopping for a loved one with a chronic illness this year, long-term illness, or disability, you may feel unsure of their needs, wants and unique daily circumstances. Here are a variety of gift ideas at every price point, with images and links to help you find the perfect gift for your loved one.
These suggestions are appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice to help you shop!
*Content is NOT SPONSORED. No affiliate links. These are my unpaid personal opinions and mini reviews, as well as suggestions from our amazing readers.
*Updated for 2020
*Most items are available to be delivered by Christmas
*If you prefer not to read this article in its entirety, then find all gift suggestions are highlighted in blue.
Streaming video allows your chronic friend to watch movies and television series’ any time, instantly, from anywhere. Especially on those bad days when doing nothing but resting is the best and only option. Distraction therapy like settling in to watch movies and television is the gift of entertainment which they will certainly thank you for. Netflix, Amazon Prime, or Hulu Plus are a few of the most popular video streaming services, and they all cost around $100-$125 per year.
Amazon Prime and Hulu plus subscriptions also allow you access to their new Watch Party features, which allow you to stream movies simultaneously with your friends!
The Amazon Prime subscription also allows access to a wide variety of ebooks, and music, alongside the streaming video service. Amazon Prime’s included 2-day shipping feature is a blessing for anyone who has trouble getting out to the shops. Now that Covid-19 demands that high risk individuals like us stay indoors, Amazon’s fast online delivery is a convenient alternative. In certain areas, Amazon has rolled out Fresh, a grocery delivery service which is a fabulous gift option.
Audible is another of Amazon’s subscription services, and quite a thoughtful gift. If your loved one is like so many of us with chronic illnesses, then reading books becomes a tricky task due to blurry eyes, migraine headaches, brain fog, memory decline, trouble concentrating due to pain, etc. Audio books can make reading enjoyable once again. Actually, Audible is also on my Christmas list!
Yesterday was my nurse/caregiver’s last day. She’s moving out of state, and is beginning her new life in semi retirement. I’m a bit anxious to find someone to fill her very large shoes, but truly excited for her and her new journey ahead. She has more than earned it after a lifetime of looking after people.
She began her nursing career by working in every single unit in the hospital, but in more recent years, she’s done the highly specialized job of a home healthcare worker. She will take on a patient if her church has been contacted with a special need in the community, but more often, she works in home hospice care. She has a calling for it.
You wouldn’t believe the stories she has told me over the last 2 years!
Like the one about the old man who she realized was in his final moments, so she ran upstairs to get his wife. She encouraged his wife to crawl into the bed with him, and tell him everything she wanted to say to him. His last breath was taken in the arms of the woman he spent his life with, as she whispered her love into his ear.
Another story is the not-so-old man who was fighting so hard to hang on. Finally, she asked his family to gather around his bed and tell him out loud that they were all there, and one by one they told him how much they each loved him. He hadn’t been conscious for some time, but he must have heard them because he let go that night, surrounded by his family.
(She says sometimes at the end, people wait to hear from a particular loved one before they can let go.)
Or the one about the woman who was rushed into the ER after a terrible car accident. Later, she was finally stabilized and unconscious when my nurse was cleaning her up.
Then suddenly the woman sat straight up, with her eyes looking wide in front of her, and said out loud, “Jesus, you’re here!”
Then she fell backward and flat lined.
This is how I see her. There are nurses and birthing coaches whose job is to help give birth to babies, but on the opposite end of life, she is there to help ease terminal individuals out of this world in their own natural time. Kind of beautiful, isn’t it?
She played a very different role in my life, however. She came in to assist me with errands and personal hygeine tasks. For me, it eases some of the stress on me and on my relationships to have a professional who I feel comfortable asking for personal assistance, as well as for the additional things I wouldn’t be inclined to burden someone else with. For example, if I’m feeling nauseous, on a rare occasion, I might ask her for a cup of herbal tea. I wouldn’t ever bother someone else to make me hot tea (literally never), but yesterday, the tea kept me from having to take my anti-nausea medications which sedate me, and it enabled me to eat something.
It might be a small favor from her perspective, but it’s a luxury most people in my position simply do without. I tend to ask for necessities like food, drink, and clothing, and have learned to let most other extras fall to the wayside. If you have someone in your life, whether it’s a spouse, parent, friend, or professional carer who is happy to do the extras on occasion, then you know how special those people are, and how much they care.
I can’t tell you how positive it is for a person’s mental health and well being to be given some options and control back… especially if they’ve had many of their personal freedoms taken, such as by disability or illness.
When she came into my life as a part time carer/helper, she understood what it’s like to be in that “in-between” stage after a divorce, and she also had the benefit of knowing me as a healthy
headstrong teenager. When I told her my secret– that I was hoping to move into a nearby apartment/ shared house, she was one of the few people who responded with excitement!
Amazingly, she didn’t ask if I was able, instead she saw it as a matter of making it possible. And then she helped me make it possible!
Together, we spent this entire last year planning, packing, moving, and then finding the right assistive devices to make the apartment accessible and safe. She was far from the only one, of course, but her belief and encouragement have been an incredible driving force and confidence builder.
This year has been such a positive growing time. I’m very glad that I took the leap toward independence, regardless of the obstacles. Looking back on the last 2 years with her, I believe that her timing in my life has been purposeful.
I’m going to miss her friendship the most, but as her friend, I’m so happy she’s having her own big life adventure. Maybe it’s silly but any sadness is being drowned out by the excitement I feel for her.
Now I’m praying for someone new- the right someone to come and lend me a gentle hand.
It can be a daunting prospect, but I’m choosing to trust that whoever it is will be the right person once again.
Thank you for visiting.
Take good and gentle care of yourself,
I’m so pleased to share a favorite blog from a friend and fellow chronic pain warrior, “Pain in the Beck.” In the below post, she did me the honor of writing about how we first “met” online ♡ To me, she has been a butterfly emerging from the shell that illness couldn’t hold her in.
Follow PainintheBeck blog as she writes about her life in NYC as an artist, a student, a chronic illness warrior, and shares her adventures with family. You will be rooting for her, and you’ll be inspired to root more and more for yourself because of her.
(Read article in full at the link below.) Thank you for reading and following.
Every day is is Hope Day here at a Body of Hope blog, but every Wednesday is #HopeDay all around the web. Spread that good stuff around 🙂
I’ve been busy these last few days, trying to help my daughter get ready for her high school prom. Although I still can’t believe that she’s done with this chapter, I’m very excited to see what’s next.
We attended her final high school concert last Friday evening. It was fantastic. The students performed music, danced, sang. It was a fun night. And I got some costume ideas out of it. The best, however, was seeing our gal, on the stage singing “Rebel Rebel,” with her class band as backup. This, while playing the electric ukulele.
My husband has been a musician for most of his life. Our daughter, however, never played an instrument until high school. In a mandatory freshman class, she started with guitar. The expression, “like a fish to water” comes to mind. After exceeding the complexity of the class, she taught herself advanced skills…
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Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it shut down! It got ugly in here, but thankfully, it wasn’t out for long.
Just the short spell of overheating, and increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.
That’s something I’ve been considering more and more in regard to health.
Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.
So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.
So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.
It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.
In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.
Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.
Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.
I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.
A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.
Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.
I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.
I’m not the young woman I was 13 years ago- I’ve been changed by this journey.
There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.
I know having multiple rare diseases isn’t a life anyone anywhere would wish for.
Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.
And so is yours.
Below is more information about our disabled brothers and sisters around the globe.
-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.
-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)
-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.
- 70 million people need a wheelchair, but only 10% have access to one
- 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
- 93 million children worldwide have moderate or severe disability
Mental Illnesses are on the rise worldwide.
- Depression: 300 million people
- Bipolar affective disorder: 60 million
- Schizophrenia & other psychotic disorders: 21 million
Chronic Illness has become a worldwide epidemic.
- 300 million people live with Rare Diseases (1/2 are children).
- Chronic Pain effects 1.5 Billion people around the world.
- It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).
If you’ve been hit hard by suicides in the news this week, you are not alone. It’s crushing to learn that these two incredible artists have chosen to end their lives.
Together you can create a plan to help you get on a path BACK TO YOURSELF.
*Your life is worth fighting for.
SHAPE ME YET ANEW
Father God, I pray
That you would shape me yet anew,
As this pot is cracked and broken
And un-beautiful to you.
Lord, I feel as if you’ve started
With a fresh supply of clay
And I’m spinning on the wheel
And my life’s begun to sway.
When you’ve shaped me in your image
And you put me in the kiln,
In the furnace of affliction
To be set and processed still,
Let the outcome be for glory,
Let on-lookers stop and gasp.
“How did He make this from nothing?”
Let the people stop and ask.
Let the beauty draw attention
To the artist and His work.
Give me beauty and a purpose, Lord,
Of which I would not shirk.
As it is with real life pottery,
A pitcher or a vase,
Make me useful to the Master
In the setting where I’m placed.
-Mary Jane Gonzales
JEREMIAH 18:4 (NIV)
But the pot he was shaping from the clay was marred in his hands; so the potter formed it into another pot, shaping it as seemed best to him.
World Aids Day 2017
So much progress has been made for a killer autoimmune disease/infection/virus that was once surrounded by so much prejudice and misinformation.
Healthcare was far out of reach. Doctors did not seem to understand. The public turned their backs.
Meanwhile men, women, children, and infants were infected, without care, suffering and passing away.
So much has changed in a relatively short period of time. Still, there’s a long way to go, especially internationally.
Maybe you have a chronic pain condition and feel as though doctors, society, and family have singled you out as a drug addict. Maybe you’re being denied treatment. We continue seeing our own friends in pain pass away due to lack of care… Or if you’re a rare disease survivor and are feeling hopeless about the healthcare situation at hand, please keep this hope in front of you.
If the HIV/AIDS community could create a revolution for themselves in the midst of such a horrific crisis, please keep hope alive that we can also. But we can only do change the system if we stay united.
#worldaidsday #hivawarenessday #raredisease #rarediseaseday #sicklivesmatter
Part I of II- By guest writer Cammie LaValle, 2016
Remember that light inside of you that used to shine? We reminisce about it in our heads; back to that person we used to be. That silent yet screaming conversation in our minds we have on a daily basis. For some, it’s the majority of the actual conversing we do and sadly, it’s only with ourselves. We are feeling ourselves; our internal light- the fire that once helped us accomplish so many things in life, is now reduced to less than a flame, more like a sad, almost non-existent spark which could barely keep a match lit.
Sure, there are flickers of hope and tiny little fires at times; but personally, they are getting few and far between. I have not given up all hope, but I am struggling to keep the grasp.
One of my motto’s is “Let Your Soul Shine” taken from a song. How hypocritical of me to tell others to do just that when I am watching, feeling and experiencing my own go darker and darker every day. I don’t mean dark as in evil, although I will admit I’ve had some pretty evil scenarios which I wish would play out in the lives of some of the doctors I have encountered in the last few years. No, I would not harm anyone; but as you read that, I am certain you can recall one of those thoughts that has played out in your mind so detailed as though you were actually plotting a dismemberment. I for one thought a log-splitter would suffice.
As I am writing this, I have backspaced hundreds of times thinking what I have to say or what I feel is not ready to be heard or will be perceived as seeking pity, over reacting, not being thankful for what I do have or God forbid, the “It could be worse” reaction we often get. Yes, we all comprehend that, but more often than not, it is far from a supportive statement as we perceive it. Minimizing our hell is what most of us feel; even though we know most of you mean well when it’s said. But I realized the words I put down, if were written by someone else and read by me, are exactly the words I would need to hear; and yearn to hear.
So without a hesitant mind, and the pain jolting through my body and hands, I shall spill the complete ugly truth that I am not shining by any means. I’ve gone dim. This is not news to some; as they know me too well to believe the crap that spews out of my mouth when I say “I’m fine.”
I ask myself daily, how much more can I handle? Do I even want to for that matter? Yes, those thoughts are there when in my dimmest hours. Will I say it out loud? Probably not. Will I say it here, when I know others just like me are reading this; yes, yes I will. I can’t say I am proud of my thoughts, but I can say I am not about to blow sunshine up anyone’s ass; especially knowing the people reading this are struggling right along with me. That’s not what we need and I may very well do it to others so they don’t have to worry about me, but I will not do it to you. I know that sounds terrible as I have more than likely never met or ever will meet 99.999 % of you. Why be truthful to people I don’t know and hide and lie to my own family and friends? I have no clue the rationale behind this and won’t pretend I do either. What I do know is that there is a greater chance those reading this, understand it to their core and need no explanation of the words, the thoughts, the expressions, the pain, the isolation, the self-doubt, and the meaning behind “Going Dim”. I fully understand all humans go through struggles in life and I am not discounting any of that; anyone or any struggle of any kind. I am addressing our struggle.
I am opening up my broken spirit and soul, my tired mind, and using my pain riddled body, to let YOU know, you are far from alone in this battle. And I may be writing what you can’t dare to say out loud, but feel it as if it has taken over your entire being. I know I have read some stories which after the first sentence I felt the lump in my throat. I certainly am not sharing to cause distress or any tears, but if anyone reading this has that lump, let yourself feel the emotion and release some of that internal pain that is eating you alive and has taken over a portion of your soul.
More than likely you have caught on that I have not begun to describe the pain. If you are reading this, you already know how it will read. However, for those friends or family that are reading this who have a loved one suffering, I will follow this with a brutal truth that the one you know, who is suffering, is too damn scared to tell you. Whether it be pride, or wanting the world to believe we can handle this, or the complete farce we muster up in order to appear stronger than we actually feel. Your loved one has gone dim. And you might have as well; attempting to care for them. Addressing the other side of this is just as important as addressing ourselves.
The ME I once was, is still seen by my husband and some family and friends; however, I don’t see her. I feel as if she’s gone for good. I talk with her in my mind and actually pray she will come back, somehow, some way. She could light up a room (from what I was told). She was vibrant, funny, witty, intelligent, strong, hard-working, worthy, helpful, selfless, and although some deep down pain existed as we all have and hide; she was happy. She helped raise 2 children, who she loves. She was a good wife, a good friend, a reliable sister and had worked since a very young age; worked her ass off. Now, the relentless quest for her to return has come up empty. She was me. I was her. We’ve both gone dim.
Where did she go? CRPS (full body), Fibromyalgia in addition about a dozen other health issues; some quite severe, has held her captive and the ransom demand at this time cannot be met. The hope and flicker of light is diminishing. Sure, I say I am hopeful and staying positive, but who am I kidding? It’s gradually becoming such a farce, I can barely hold back the tears when I say I am still positive. It’s a blatant lie. I feel as if I am getting a very real glimpse of Hell.
Ice pick, razor blade, vice, hammer, pins, needles, knife, match, truck, salt, gasoline, fire, electric shock and flames; all of which I feel has been used during this captivity. A scene from a mysterious attempted murder movie in which we wait in the trunk to be rescued. Someone on the outside may not comprehend that comparison, but I, along with so many others; truly feel this. And the trunk is our lives at times. That dim, cold, dark, isolated place, we don’t willingly go to, but find ourselves there, stuck; more often than not. The tools used is what we compare our pain to; as CRPS/RSD plays out such a brutal attack on our bodies daily. As we wait for the ransom, which in our lives is a doctor, a treatment, a cure, we succumb to this attack and 24/7 try to prepare ourselves for the next dreadful blow. I try to hold it in as to not be a burden; not wanting people to see how bad it is. There are times it just comes out, screaming, howling, paralyzing pain to the point I can barely breathe. Arms, legs, feet, back, hips, face, ears, chest pain where it feels like I am having a heart attack, but I know I am not. Then I think, what if I do have a heart attack? If I feel like that daily, if I have one, will I even know? And my hypertension gets so out of control, my neck feels like I am being stabbed, my vision gets blurry, I lose minutes and have lost recollection of hours of time. I get scared to be alone in my own home. This scares the sh*t out of me! On nights the blood pressure is too high and the chest pain is severe, I am too damn scared to go to sleep as I honestly wonder if I will wake up. Yes, that is how my mind works. I pray I wake up. I won’t go into the thoughts and prayers that go on, when I honestly question if my life, as I know it, is actually ending that evening. This is brutally honest and I know it sounds far-fetched to some. But, many reading this feel the same way or have felt the same way. I am saying it now, to give you some peace of mind that you are far from alone. It is not by any means a healthy way of thinking, but it is where one’s mind tends to go at times. I am not proud of these thoughts, but they are true.
Pain changes people. It’s relentless. The beast wins in those moments and all I can do is wait for it to let go of its ever so tight grip of my body. I think to myself during these times, how the hell am I to live this way? How is my husband to live this way, with his wife being consumed by pain, lost herself and her feeling of self-worth? I am not the woman he married. Far, far from it. He is my biggest advocate and has not left my side, although I wouldn’t blame him. His wife is gone. The anxiety, stress and depression that goes along with this beast leads my mind to wonder “when” he will have had enough; not “if”. For better or worse, sickness and in health, meant something to him, just as it did and does to me. How lucky am I to have such a man who took his vows so serious, that as he watches his wife diminish and change into someone he didn’t marry, he continues to assure me we are in this together and he will never leave my side. He is the only one who can make these demons stop in my head. He is the only one who has seen it all and still has faith I will come out of it; come back as the woman he married; come back from “Going Dim”.
What has brought you to this page, is why many of you will understand what I am about to say next. You are dim yourself from disease and pain or you are caring for someone and are desperately trying to find a way to understand and help that person; your loved one. (For those seeking help to care for another – THANK YOU! Sadly enough, you may be the only one doing so for that lost screaming soul).
Too many are left alone and instead of having support in waiting for that ransom, they remain in the trunk; dim, isolated, begging for relief, kicking and screaming to get out; get help and for someone to actually listen. When there is never a response, those broken souls take it upon themselves to put an end to their private mysterious movie which is their life. They don’t think they can handle the next blow, they have been disregarded by doctors, family, friends and in their mind; the world.
Pain messes with your mind. Even those who truly have support; at times feel like an overwhelming burden to everyone, isolated and alone (even if the room is filled with 20 people) and misunderstood, they would rather not be on this earth for one more second of pain or one more feeling of being dismissed by a friend or loved one. That emotional pain alone when one’s suffering is dismissed; as if we are over-reacting to a common cold; could and has triggered people in pain to start planning their demise, as it is too much for them in their broken mind and body to fight anymore. Death, in their mind, however wrong one deems that thought process; is what they are contemplating. If you think this is reaching; just read through posts in some of your or your loved one’s support groups.
Daily, I see people tell people they never met, that they “can’t handle it anymore”, “I just want to end it”. Keep in mind, if you look at their FB page, or Twitter, or recall a recent phone call, most would have just said or posted on how great their day was. “I am fine.” It’s a farce, which most of us continue to do; as to not upset our family or friends with our true feelings and pain, or to not be honest with people we actually know because we’ve been dismissed too many times and are broken to the point that some knowingly make a decision to NEVER again speak to a loved one, hug a family member; and even their own children; as their mind has told them it’s easier to die than live.
How sad is that? Are they selfish? When people take their lives due to pain, any type of pain; they cannot comprehend the ramifications other than they no longer will have pain. So completely torn down, the thought their child will lose their parent, is not strong enough to stop them. How in the hell is our society missing this? How are family and friends missing this? How are people in pain getting to this point? Whether it be lack of treatment, lack of cure, lack of support or the mind games played out in your head when your pain takes over your life; it must, meaning right now, start being addressed.
Are you thinking your life is not worth it anymore? Well, it is. You don’t see it, but others do. And I beg anyone reading this, to reach out to someone. I can almost guarantee these thoughts have gradually entered the minds of your loved one who experiences 24/7 pain; not remembering a day without it. And if someone asks you, be honest. I have uttered the words I’m fine for the majority of my life; over half of which has been in chronic pain. I hid so many things from even my family; out of pride and factors which stem from my childhood, some of my own family do not believe I am in such a state of despair and pain; broken down with a tired soul and body that feels useless. I hid for too long. Yes, it’s my fault for putting on the mask. I was and at times still very good at it. A habit very hard to break.
It’s natural for me to pretend I am okay; for I’ve done it all my life in one way or another just like most of humanity in some aspect. However, I am removing it now and so should you. This does not give us the right to become an un-consolable hot mess of a person; but it does give us power to deal with what is behind the mask; our true selves. It certainly will not be easy, but how worn out are you right now reading this? My soul is tired and there is no amount of sleep in which can awaken it.
“Live without living?” What does that mean? If you ask that question, you have yet to comprehend how our minds work; how we feel & what this has done to us. Or better said, what it has done with the person we once were. The reason I; we’ve gone dim. We strive to live better and we do anything and everything to get there. Find relief, find a new normal, find peace, find understanding, find faith, find God, find a way; find ourselves. I am trying and I have resorted to begging at times just to get a doctor to listen to me. Most ignore it; but I’ve been lucky to find one that listened; one who upheld his oath. One who has promised to help me find a way, a new normal, and a treatment in which I can maybe, just maybe, have a chance at finding myself again. I don’t trust many, but trusted him and have for over 10 years. Due to this trust and mutual respect between a doctor and a patient, I have a chance; a slight flicker of light in my dim world which I am grasping onto so tight, if I were to let go I feel as if I would crumble; again.
You see, although I’ve gone dim like many of you reading this, I also found HOPE and it was due to raising some hell and advocating for myself and not shutting up when I was told NO. I kept going, I kept calling, I kept writing; I kept fighting. I am still dim, but I have seen the flicker of light; that same light which could let “My Soul Shine”. I don’t know if it will, but I’ll be damned if I’m not going to try. I deserve it; as do you.
I started writing this 8 months ago. When I started, I was in my darkest times. I thought about deleting those parts; but that would be me lying to you, and again, as life has taught me, continue to pretend I am okay when I am not. So I hope when you started reading, you felt you were no longer alone in the pain, the dark thoughts, the hopelessness, sadness and you knew, in your heart and soul, there are others like you. And as you read on, you found understanding, a bond with someone you probably will never meet. A bond due to pain, no one wants, but one everyone needs so they don’t feel alone and don’t ever think tomorrow is not worth waking up to.
I’m honored to share this project by chronic illness activist, guest writer Cammie LaValle, featured for CRPS/RSD Awareness Month. She’s not only a personal friend I met in the chronic pain community, but she’s a personal inspiration to me as well as so many others. She leads the charge in fighting campaigns for chronic pain and rare disease causes with the tenacity like none I’ve seen before, whilst attacking her disease with the same vigor. I’m proud to be in the same warrior club with a woman like Cammie, as I have learned much from her. Read more RSD/CRPS articles, see art projects, poems, and survival stories here. Talk to others with CRPS/RSD here. Article originally published in 2016.
Thank you for visiting and sharing, -Mary