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My Caregiver Left

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,

💙Mary🦋

Caregiver

Facebook pages for Rare Diseases organized by State to connect with, find area specialists, arrange meetings with other carers, organize area support groups, etc. Find your page by clicking on the link, followed by the name of your state.

November 13th is Caregiver Appreciation Day. The month of November is Caregiver Awareness Month.

Find articles, poems, and infographics about and for caregivers here. Whether you are a spouse, parent, sibling, nursing aid, or if you are on the receiving end of care, there is something here for you.

Here at abodyofhope, we named November 13th, Caregiver Appreciation Day to honor caregivers everywhere ❤

More about finding in-home care for yourself or a loved one: https://www.caregiver.org/hiring-home-help

Caregiver Appreciation Day, 2015

Thank you for trying to understand chronic illness. #Spoonie #caregiver

Today, November 13th is Caregiver Appreciation Day.

November is Caregiver Awareness Month. If you have a chronic illness or disability, you have carers. Even if you are not confined to a bed or home-bound, you are still receiving support from someone whether it be a spouse, parent, family member, friend, professional caregiver, online support, or your physician. Today, make sure your carers know that you appreciate the big and small things they do to make you more at ease physically or emotionally.

If you are a carer and feel overwhelmed at times, please know that you are not alone. Below is a quote from the book, The Mindful Caregiver: Finding Ease in the Caregiving Journey:

“Many caregivers share that they often feel alone, isolated, and unappreciated. Mindfulness can offer renewed hope for finding support and value for your role as a caregiver…It is an approach that everyone can use. It can help slow you down some so you can make the best possible decisions for your care recipient. It also helps bring more balance and ease while navigating the caregiving journey.”
Nancy L. Kriseman

If you are being cared for by your spouse or vice versa, I highly recommend reading the book, Healing Together:

“In a relationship between two people who may be reeling after a trauma, a commitment means that they are taking an active and involved role in addressing the situation they are facing. It also implies a commitment to each other during the recovery of trauma- an understanding that no matter how rough it gets, the other will be there. You intend to face adversity together, with a strong commitment to each other and the future.”Healing Together: A Couples Guide to Coping with Trauma and PTSD

If you are supporting someone through a chronic illness or disability, please check out one of the groups on Facebook to find support and to have that crucial outlet for yourself. Caregivers can feel as isolated as the person they are caring for at times, but don’t know who they can talk to. You are not alone, and there are people to share your burdens with.

We have so many events to raise awareness for our different diseases and create unity among people with illness, but we should also raise awareness for the plight of caregivers. You are so beloved to us. You deserve a parade! Thank you for being our silent partners on the journey.

Today we celebrate you.

If I Ask You for More: poem about the caregiver/patient relationship

Reviewing Low Cost Supplement Shops: Swanson & Piping Rock

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!

Amazon

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 Vitamins

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.

Swanson:

-Ease of website ✔

-Large selection✔

-Customer reviews ✔

-Low prices✔

-Fast delivery✖

-Customer Service ✖✔

-Quality✔✖ (just like anything, don’t go with the lowest priced brand and it will be fine)


Piping Rock

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.

Piping Rock:

-Ease of website ✔

-Large selection✖

-Customer reviews ✔

-Low prices✔

-Fast delivery✔

-Customer Service✔

-Quality✔✖

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.

Be well!

-Mary

In a time of Crisis…. Managing stress during covid19


Art bt Ruben Irelandartwork by Ruben Ireland

In the past, I’ve written on rare disease and adjusting to life after becoming homebound. As the world learns to cope with the reality of life at home, threatened by a terrifying virus, and concerned for what the future has in store, this is the only topic I’m compelled to write about today.

While we live under the shadow of Covid19, how are you handling the images in the media? How are you coping with social distancing, and isolation? Have any of your family or friends tested positive?

Here we’ll be discussing some of the feelings that come along with heightened stress, and why it can make our lives seem out of control.

In a crisis, the natural reaction is to feel shocked, upset, overwhelmed, concerned, confused, sorrowful, and/or physically agitated. If these feelings sound familiar to you, then take some small comfort in knowing that you’re reacting like a healthy, normal human being.

Though these feelings can be physically and emotionally difficult, they are completely understandable under the given circumstances.
On the flip side, if you were living without a care in the world, then one might wonder if you understood the gravity of the situation. Staying in denial might feel better temporarily, but it can lead you to take dangerous risks for yourself and your family. Failing to grasp the seriousness of our situation may lead you to go as far as spreading misinformation or even the virus itself.


Concern serves a purpose and it’s the appropriate reaction for survival. Concern can be a very useful emotion, and keeps you more alerted to possible dangers.

We generally try to avoid or ignore our concerns and feelings of stress, but in a crisis situation, remember that feelings of anxiety are there to serve a purpose. It’s perfectly understandable to be worried for your loved ones. It shows a heart of compassion; it can drive you to check on the people you care for, to listen to local authorities, and to go the extra mile to keep your family safe.

Everyone is sorting through their own unique life circumstances due to the “Stay at Home” orders. If your regular routine has been interrupted by the quarantine, then you’re even more likely to feel the pressure. When you lose control over your plans, you can begin feeling as though life has become chaotic, and you’re helpless to change it.

Losing your workday and regular routine can also cause confusion, feeling a loss of accomplishment, lack of motivation,  and feeling a sense of uselessness. Being alone with your thoughts in isolation all day removes your typical daily distractions which can make stress seem even more pronounced!

These are distressing times, and the images in the news can play up our worst fears. It’s the media’s job to capitalize on the most distressing images and stories- the ones that grab our attention, and get our adrenaline pumping. I would caution anyone from watching too much broadcast news. Especially if you’re home with access to the news all day; it’s guaranteed to pump the volume up on your stress. The same goes for unsubstantiated conspiracy posts on social media which are meant to tap into your deepest fears.

In the moments when anxious thoughts flood your mind, logic won’t always prevail. Your survival instincts can begin to override. During periods of crisis and high stress, you may find yourself in “Survival Mode” (Fight-or-Flight).

If so, you might be experiencing: nervousness, sleeplessness, bursts of adrenaline, agitation, excessive loneliness, intrusive thoughts, racing mind, mood swings, sudden bouts of exhaustion, and confusion.


In survival mode, we instinctively want to fix things. We feel the need to actively find solutions, which is a great motivator, however, it can also lead to feeling helpless if we don’t have ways to exercise these desires. Feeling helpless combined with high stress and isolation can be a slippery slope to feelings of worthlessness. If you have a family member with a history of depression, try to check in with them during this time, and let them know how much they mean to you ❤


You may not be able to find a cure for Covid19 or go back into work yet, but using your energy to do a hands-on project at home will help you get a better sense of control, and therein begins your new routine.
Building a new routine at home will help you feel more in control. Building a routine can be as simple as getting up at the same time each day, making breakfast, and limiting your screen time.

On that note, I would encourage you to avoid the common terms “positive” and “negative” emotions, and instead give yourself permission to feel whatever you’re feeling. Specifically, labeling emotions as “negative” can make us feel as though sadness, loss, heartbreak, and frustration, are somehow forbidden. If we view our most challenging feelings as “negative,” it can unintentionally, cause a sense of shame or wrongdoing. Though some feelings are uncomfortable, they help us learn, grow and build character.
Acknowledging our full experience, however difficult, can also allow us to have more empathy and compassion for others.

Seasons of struggle have a way of making us feel alone inside of our pain. If it seems as though no one understands, if you’re feeling withdrawn, depressed and/or have a sense of doom, I would urge you to contact a counselor through an online therapy app. Please take good and gentle care of yourself! (You’re the only beautiful you that we will ever have.)

We should all try to reach out to our friends and family by video chat during this quarantine for some social interaction, get some fresh air, and find creative ways to connect with one another (safely) online.

If you’re staying at home, and observing social distancing, I thank you personally on behalf of my immunosuppressed self and all of us who are at higher risk. After almost 9 years, I understand that the idea of being confined to your home can at times sound like a prison- to be given boundaries you can’t cross. But this boundary is to keep you safe, to keep the virus out, not to make us feel trapped or alone.

This season will be over soon. For now, let’s make the most of this time and try to be the best versions of ourselves we can be in the face of hardship. Reach out, check on your elderly friends and those with disabilities and chronic illness, since they may have difficulty getting basics. Caregivers and delivery programs may not be serving them right now, so an offer to help might be appreciated.

Most of all, I want to remind you that you’re not alone. The entire world is going through this difficult time collectively.  Thank you for continuing to help your community by staying home, and remaining socially distant. It’s a sacrifice you’re making for the greater good!


Keeping our healthcare professionals, essential workers, and all those fighting this virus in our prayers and on our hearts. Also praying for the safety, health and healing of our brothers and sisters around the world. Let this be a time of community, understanding, and finding more gratitude with every passing day. We hand over our fears and uncertainties, trust the future to you, and plant our feet in your eternal hope. Amen.
God be with you.

Thank you for reading. Take good care, and stay well. -Mary


More resources:

How to manage anxiety in a changing world

10 ways to deal with big changes

25 ways to volunteer from home

Interview with Pat Guerre: on Kneading Hope Organization, Rare Disease Day in DC, Scleroderma, and CRPS

Hello everyone!

Today we have a special treat as Pat Guerre, co-founder of the Kneading Hope Organization has agreed to an interview. Pat recently returned from Washington DC where he spent Rare Disease Week. We at abodyofhope blog are so grateful that Pat Guerre is opening up about his Rare Disease Day experiences, his art, and non-profit work.

I was introduced to Pat through his incredible wife, Gina Raring-Guerre, who many reading may already know. She was a member of my support group Living with RSD, and she has gone on to become a strong voice in the CRPS, Scleroderma, and Rare disease community, along with her partner and husband, Pat. I can’t wait for you to hear their story!

***

Hello Pat! Welcome! It’s a pleasure to have you joining us, and filling us in on your work and latest trip to Washington.


1. Firstly, what is Kneading Hope?

Pat: I suppose I should go back a bit. In 2013, my wife Gina, who suffers from both RSD/CRPS and Scleroderma was down to a weight only someone on their death bed should be, and her doctors confirmed exactly that. Being an artist, I began painting 12″ X 12″ hearts to fill her room and share my love with her. They prescribed her medications we couldn’t afford, and her insurance would not cover them. That’s when our fundraising art project was born called “10,000 Hearts for Gina”.

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In 2016, I submitted a work to Rare Disease Art and was awarded an Artistic Merit Award. I flew to Washington DC to be part of the reception, and it changed my life.

After my trip, I decided to participate in almost all of the events that the EveryLife Foundation had arranged for the week. I listened and learned about the rare disease community and all of their concerns. I still think about those who may or may not still be with us today. I remember parents so determined, yet afraid, trying to keep a brave face to hide their pain. It touched me completely. When we walked Capital Hill, a patient I was walking with started talking to me about patients like herself, the caregivers, and why we were all there together.

I got home from that trip changed.

I decided that after years of staying home and sharing my artwork with a few, I could do more. So with my wife Gina, and a few friends we started Kneading Hope to try and reach out. We don’t target the advocacy end of things, but the patients, caregivers, and families of people with rare diseases.

We have three main goals. Number one, awareness, and funding of other issues, through the 10,000 Hearts for Gina project, of RSD/CRPS and Scleroderma, as well as other rare diseases. Secondly, using art to raise awareness of all rare diseases through an online presence and art shows. And third, figuring out how to give caregivers some kind of respite.

We are new, we are learning, and we will continue, dedicated in this work. We also send parts of the 10,000 Hearts for Gina project out to patients, caregivers, and medical facilities and their staff to make people aware. Awareness is where it begins.

 

 

 

 

 

 

 

 

 

 

2. How did you get involved with Kneading Hope and advocacy?

I started Kneading Hope because I went to DC to show my art. There were so many people advocating and I was inspired by their dedication. I decided to go into the community based nonprofit. We didn’t start Kneading Hope as an advocacy group, we do however believe that knowing what’s happening in that realm, can only help educate, and let people know there is hope out there. 

We feel that Kneading Hope’s purpose as well as financial commitments are better served in local endeavors and supporting other groups that do the advocacy. We advocate as individuals, and that is often a difficulty financially. But, If everyone focused on advocacy and no one went out into the community, I don’t feel people would be served as they need to be, so we are looking into community-based issues such as art therapies, caregiver support issues and respite for them, as well as art as a way to focus on the diseases and the stories behind it.

3. Why did you go to Washington DC for Rare Disease Week?

As I mentioned above, it is important to be informed, so as we go out into the community, we can let people know there are folks trying to help them. The info shared, not only on the legislative side, but also the medical and research side, is often overwhelming, but also important to understand. I also find that getting together with other organizations and networking with them brings all of us closer together to share ideas and thoughts to further all of our goals.

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4. Did you meet with anyone of interest? If so, whom? 

I have to say that this is kind of a funny question to me as I grew up in Los Angeles and have met many famous people. Both in film and music, so I have been raised to just realize people are people. It takes a lot for me to consider someone a person of importance, yet this year, as well as last year, I did feel there were people of importance I met.

Last year, it was Representative Brownley of California’s 26th district. It was amazing. As we talked I learned that she had recently lost a colleague to Scleroderma. It was a very close emotional conversation and she has been a close ally to the rare disease community since being on Capital Hill. That was impactful because she understood, at least half of, what Gina and I have been through.

This year was a bit different. There were two guys there who suffer from Freidreich’s Ataxia who were involved with a bike race called The Ataxian, which we watched the documentary of. These 2 guys, Kyle Bryant and Sean Baumstark, accomplished the impossible. They, along with 2 other team mates, did the Race Across America and rode 3,000 miles in less than 9 days.

Pat pictured center with stars of “The Ataxian” documentary

Their inspiration, motivation, laughter, and caring for everyone, was the biggest interest for me. It is folks like this, that unless you are familiar with their disease, you would never know about. They, and what they are doing, is why I go to DC. There are countless others that are of interest, and inspirational, and so full of ideas, courage and hope, it makes the whole trip worthwhile.

These along with the researchers, people in academia, as well as all others, including the artists at the Rare Artists Reception, are truly the ones I am most interested in and their stories, struggles, and determination to make a change. They far outweigh any person you might think is of interest on Capital Hill.

They are what keeps me going.

 

5. What was the highlight of your DC trip?

I honestly have to say that I always walk into situations with an open mind, not knowing what to expect. I think one thing will stand out, and yet it’s always something else that gets me. This trip was no exception. There were 2 things that really grabbed me that I can say were highlights.

The first was the Conference and discussion on Genetic research and Gene therapy at the NIH (National Institute of Health). Though Gina’s diseases are considered autoimmune diseases, the topics the panels spoke on were incredible. The speed that the research is advancing in is amazing and I was happy to see that one of Gina’s diseases, RSD/CRPS, is actually being studied at the NIH. They are looking into its genetic markers. It is very upcoming research and it seems the possibilities of early detection, possible treatments, and possibly cures, are on the edge of being discovered.

The second, was after the NIH conference, walking around the mall, in the rain, and happening upon The Disabled Veterans Memorial. Though it is intended for disabled war vets, the words written on that memorial spoke volumes after such an intense week. Two of my favorite quotes I read that night were, “It’s not what you have lost that counts, it’s what you do with what’s left,” and “We start by not thinking so much anymore about what we have lost. You must think about what you have left…and what you can do with it.”

 

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Disabled Veterans Memorial Plaque

 

6. What is something you learned in Washington that will likely impact your work this year?

I remember my first conference last year in DC. We sat at a table, and a gentleman named Tony Pena, who was the Vice President of Cure AHC asked if we were new to the conference. He obviously knew we were new there, as I was like a deer in the headlights of an oncoming car. He so gently said that everyone would guide us through it and not to worry because they had been doing this for years, and they still didn’t know everything.

 

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That is what makes being there so important. Every year there are new issues. New legislation. New ideas. And most importantly, new people. Yet this year I learned more than anything- we can’t do this alone. We all need to work together, collaborate, support and hold each other up. I truly felt this year, that all of us are not a rare disease community, but rather a rare disease family. We all have our own issues, but together, speaking as one group, we are truly a force to be heard. Our needs are not individual, but are all important and need to be addressed as one voice because it is hard to ignore one disease or the other when we all speak as one.

 

7. In Your Opinion, what is the greatest challenge the rare disease community or patients with rare diseases face today?

I have to say that the challenges are great and cannot be addressed with one simple answer. There are over 7,000 rare diseases and over 30 million people in the US diagnosed with a rare disease. Some have large groups of people affected, still less than 200,000 (in each condition), and some with only 3 or 4 people per condition. This causes some major hurdles and challenges in the rare disease community.

The 1st thing that comes to mind for me, is diagnosis. With our country being so large, and so few experts in any one field of rare diseases, it is a critical need to get proper diagnosis. This is often the most difficult task as far as the medical end of things go. Doctors may not be aware of a disease and misdiagnose it. Patients that do have doctors who know and admit it is beyond their knowledge may recommend the closest experts, although those experts may have no idea of the disease. This can go on for years with diagnosis after diagnosis and never actually getting to the actual diagnosis.

Early diagnosis and proper treatment, if there is any, is critical for health and quality of life. One must remember that with over 7,000 rare diseases, only 5% have FDA approved drugs or treatment. With that being said, early treatment of the symptoms can help tremendously.

Next is the size of the patient pool of any 1 rare disease. It is not hard to see how breast cancer gets huge publicity and funding and something like Pemphigus or Alpha 1, or even GoodPasture Syndrome is not ever heard of in the main stream. There are hundreds if not thousands of diseases that no one has heard of. Awareness of diseases is of the utmost importance, in my opinion, because the more people that are aware of it, the more they can gain support, and those willing to fund research.

 

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8. If Someone reading would like to get involved in rare disease awareness or chronic illness advocacy, how can they get plugged in?

There are many great organizations that do advocacy. On the rare disease side, NORD (National Organization of Rare Diseases) is an amazing group. There is also Global Genes and The EveryLife Foundation that do great work. Many individual groups specific to a disease are often great resources as well. Many of the issues these groups advocate for can have incredible effects for many diseases, not just rare diseases.

I also would say that getting involved with a support group, whether online or in your community is also beneficial. I actually got involved because someone sent the info for the Rare Disease Artist’s contest which I had never heard of before. Through that interaction, I was exposed to so many amazing groups.

If you are so inclined, form your own group and research state or federal issues. Spread the word to those in your group/s. Ask questions and don’t be afraid to ask other groups that you may not be affiliated with. Most people are more than willing to give you info or advice. I always say that the worst info or advice is that which you are not aware of.

 

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Disabled Veteran’s Memorial

 

9. What can the average person do to help make a difference in policies effecting health?

From my own interactions with people in congress and their staff, as well as on the state level, it is actually reaching out to them. I used to think writing a letter and never getting a response meant it was forgotten, but after talking with these folks, you learn that they are dealing with hundreds of issues. You need to let them know, or remind them, as they will say, the issues are real and need to be dealt with.

I am a big proponent of the Rare Disease Legislative Caucus and would love to see every senator and congressperson in Washington become a member. Not only will it show how important the issues of the rare disease community are, it will also show how a bipartisan, bicameral committee can get together. Write a letter to your senator and congressperson and either thank them or encourage them to join the caucus. It is growing and is impressive. The link to see if your senator or congressperson is on it can be found here http://rareadvocates.org/rarecaucus/#tab-id-1.

 

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10. What is your next venture?

Since Kneading Hope is a new venture, we are looking to expand our reach and impact. For the first time, we will be showing the 10,000 Hearts for Gina project and raising funds for 2 organizations. We are also trying to start up a couple of small local programs. One will be involving art therapies, and for the other, I have started attending a caregiver support group to find out how we can offer respite to caregivers and meet caregiver’s needs. This is an important part of our work.

We also intend to work with another organization to start an online gallery, and perhaps curate art shows of work from all aspects of the rare disease community to raise awareness through stories and works, as well as raise funds through awareness and research projects.

 

11. What would you like to tell us about 10,000 Hearts for Gina?

I just want you all to know that this has been an incredible journey. I have been at it for 5 years now and could never have imagined where it has taken me. It is something I share with everyone. I really think that doing something bigger than you ever could imagine is what it is all about. Sharing the works with patients, caregivers, hospitals and doctors has been about the most emotional thing I have ever done and will continue to do through Kneading Hope.

It has been an honor to be able to share some love, light, and hope through the work. Sometimes it is painstakingly difficult as every work brings thoughts of those suffering, those lost, and those who haven’t been diagnosed, but it is all of them, and their strength, that keeps me going. It truly is their project, whether they know it or not.

 

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Would you like to leave us with anything else?

I just want to tell everyone that you matter. Your voice matters, so never be afraid to speak up. Kneading Hope is dedicated to doing what we can for as many people as we can so please reach out to us if you have any requests or ideas. We are building this organization and want your feedback. Also, if you know someone who is down and out and could use a little light, love, and hope, don’t be afraid to ask us to send them a heart. We will try and get out as many as we can under our circumstances. Sometimes it might just change someone’s outlook and let them know they are not alone in their struggles.

***

Please support Pat and Gina Raring-Guerre by following and liking their pages, and thank you for sharing to help them spread the word!

Facebook: https://www.facebook.com/KneadHope/ 

Instagram: @KneadingHope1

website: kneadinghope.org 

email: info@kneadinghope.org

Donate to Kneading Hope 

PRINTABLES Thank the People who Support You

Hello Readers!

November is Caregiver Awareness Month, when we honor the people in our support system. Three years ago, on this blog, @aBodyofHope named November 13th, Caregiver Appreciation Day, otherwise known as Supporter Appreciation Day!

On this day, we can reflect on the ways people around us make life a little bit brighter!

It’s rare to find those who care, even after tragedy strikes. In crisis, our circles tend to thin out, and only the very special remain in our lives, trying to fight along with us.  We try to convey how much we care as often as we can, but words can feel inadequate at times to express what their presence means. A sweet little reminder always helps to drive the point home! 🙂

Your support system may include a friend, your spouse, a family member, a physician, a home care nurse, a neighbor, an online support group, or people from your church. How touched they’ll be when they’re sent this surprise from you!

Consider the small and big ways they bring light into your world. Share one of these specially made images to convey your gratitude.

Because of my personal losses in the last couple years, I didn’t know if I could continue doing this campaign each November. In time however, the people who remained in my life cheering me forward, reminding me of my strength, now appear sweeter and stronger than ever. More than anything, I wish I didn’t need any help at all because giving is simply easier than recieving… It’s such a learning curve, but I try to be more grateful than guilty as much as possible. Any way to inject more kindness and smiles into this world is something I want to fight for. I hope you will help spread the word! 

If you are a caregiver to someone with a chronic or terminal illness, if you’re in the support system of a loved one with mental illness, or if you are supporting someone going through a major crisis, this is a reminder how much you matter. We can’t run away from the hands we’ve been dealt. You might have that choice, yet you’ve chosen to stay and fight along side your loved one. You lend your own emotional, physical, or mental strength at times. Someone like you is so very rare. Thank you for being you!
This collection was created as a collaboration between charcoal artist, CRPS and Mast Cell Activation Syndrome sufferer, Robyn Triscari and myself as a gift to you! Robyn wanted to give the chronic illness community a way to thank our supporters and “champions” so we worked together on this year’s Supporter Appreciation Day! Thank you, Robyn for your generous idea, and for sharing your artistic talents!

To my readers: It’s so meaningful to me that you follow this page, leave such encouraging comments, and share these messages with your friends. I treasure your readership and continue to pray for you. You challenge yourselves to learn all you possibly can from your lives, and your comments continue to challenge me.  You make my world so much brighter, and bigger! I want to thank you on this supporter appreciation day for your impact on my life!

You may save these images to your phone or computer, share them with your loved ones on social media, and we would love for you to print them if you’d like to frame one as a gift or send as a special card.  

We encourage you to include your own personal message of thanks along with it.

 

Image and quote by Robyn Triscari for RSD/CRPS

http.Download You Hold My Heart Image

Cloud Photograph by Marie Hunter

Download Thank you for being a good friend Image

Download No words can express Image

 

Collaboration between Robyn Triscari and abodyofhope

Download Hand in Hand Image

 

Collaboration between Robyn Triscari and abodyofhope

Download Thank you for your part image

 

If you have a “champion” in your life, someone cheering you forward, this is the perfect occasion to say, you’re the best.

We hope you will help us pass on the Caregiver Appreciation Day message!

For your convenience, I have also made these images available to share individually from the Facebook page,  https://www.facebook.com/groups/chronically.inspired  

Please share in comments who you are appreciating today!

*****

 

If I Ask You for More: Poem to a Caregiver

Learning the Gift of Gratitude

More poetry, Quotes for Caregivers, and what it means to have a Home Health Aid here

 

This is my first attempt at linking downloadable printables here, so your feedback is appreciated.

Writing Projects for November 2016

writing projects for November

November is buzzing with creativity among writers, bloggers, and in social media sharing as well; I want to take a beat to discuss a few of the exciting projects I know to be converging this month.

“NaNoWriMo” or National Novel Writing Month is kicking off today! Writers have been preparing, and now the task is at hand to compile a 50,000 word book in 30 days. Can you imagine the focus, commitment and creativity that requires? For anyone who is in the midst of writing a novel this month, I wish you the very best! If you are participating in NaNoWriMo or have in years past, please comment and drop us a message sharing a bit about your experience.

In the blogosphere, November is known as NaBloPoMo (National Blog Posting Month). Every day of the month, many bloggers will update their blogs daily instead of weekly or monthly. Keeping up interesting daily content with images, links, and maintaining visitor interaction is quite a challenge! Please support and share your favorite blogs during the month of November. If you are blogging this month, comment below to let us know where we can follow you, and what you tend to write about.

Gratitude writing challenges are popular with writers as well as on social media to celebrate Thanksgiving #NaNoPoblano. Whether it’s November or any month of the year, any project that encourages one to practice thankfulness is positive. Do you believe gratitude challenges create more overall gratitude year ‘round? Are you participating in a grateful challenge this month?

In my social networking community and blogroll, November is always Complex Regional Pain Syndrome/RSD Awareness Month. Many of my Chronic Pain friends are taking part in daily photo challenges, sharing daily facts and writing about their personal journeys with CRPS, creating infografics, and organizing community educational events. November 7th is Color the World Orange day, where we wear orange in support of the estimated 100 million suffering with daily pain diseases. I would love to invite you to wear orange on November 7th to help educate your community on chronic pain.

I am inviting anyone with chronic pain and chronic illness to email me at abodyofhope@inbox.com to share an aspect of your personal story. All of the CRPS/RSD stories shared during this month will be linked under the category RSD/CRPS in my categories drop down menu.

There are other important events in November like: Cancer Awareness Month (MoVember), Epilepsy Awareness, Alzheimer’s Awareness, National Caregiver’s Awareness Month, and November 13th is Caregiver Appreciation Day.

Whether you are a writer, a reader, a patient advocate, 0r showing your appreciation this month, I wish you: Passion, Growth, Gratitude, and Perseverance.

**********

If you are participating in a writing challenge or an artistic group project this month that I did not mention, please do share in the comments section! 

Choosing Myself: One Year After Separation

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autumn chrysanthemum by Natalia Drepina

One year ago today, my husband decided he wanted to separate. For months after, I fought for my marriage alone, for the man I loved, and then…after months of silence, I realized I was standing alone with an untied knot in my hands. Everything was torn away from my life. I had to decide whether I would keep going on, or if the pain and loss was too much to bear. I made a decision to continue fighting, but this time, for myself. 

I wrote another post today in which I outlined May 1st of last year, and how the days and months unfolded with everyone’s shock and grief and the unexpected surprises to come which I could never have foreseen. But, I think I’ll save that piece for my journal as today I don’t want to look back thinking only of my ex-husband, and the loss of love. I’ve grieved him, our marriage, and our life together throughout the year. Today, I want to look back over the year and remind myself that I overcame everything I believed was utterly impossible to do alone. I want today to be another choice for myself. Next year, I want to celebrate this day as the beginning of letting go and starting fresh. Typing those words brings a few tears to my eyes, but I want them to be cleansing tears. I don’t know how to be just me without longing and loving and planning for 2 yet, but I will learn, and I have great expectations.

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Asperity by Natalia Drepina

The first thing I did when I came to stay with my parents was I made a doctor’s appointment. It’s the most difficult thing I have to do physically; only my ex had ever taken me before- and my doctors helped us avoid making the tremendously painful and exhausting trip by scheduling me months apart. After such an emotional shock, why did I want to go through a physically traumatic experience with an inexperienced caregiver? I guess I just had to prove to myself that I could do something impossible without him! I went out of my way to do as many impossible things as I could find while I was so emotionally fragile. I’ve been to several doctor’s appointments, I’ve had new tests, and I had been afraid of going back to the hospital, but I’ve since been twice this year. My body fighting me on the outside as I pushed it harder and harder seemed to match the feeling of my heart dying on the inside. 

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In the autumn hands by Natalia Drepina

My ex-husband was my caregiver for the last 4 years of our relationship. He knew what no one else could: about my condition, about my needs, about my doctors, about my life, about my heart, and he knew everything about my soul… I thought he did. When someone has spent years exploring the very depth of your soul, and can go to such lengths to reject you, no pain matches it. 

 

The loss has been cavernous. I first believed I wouldn’t be able to continue on living without him- practically or theoretically. Not because he supported me physically, but because he was my heart. After mustering the strength to ask my mother and father to help me do several impossible things, I went in search of both a professional caregiver and marriage counselor. That took me a great deal of courage to even allow a stranger to enter this room. I thought, how will I carry on a conversation? What if they can’t be quiet enough for my pain level? What if they don’t know how to touch me and injure me, spreading my condition? But I had to do these impossible things, as well. I had to allow a stranger bathe me, and help me dress, and prepare my meals. It was a point of my very survival to find someone else to help me with my basic needs. It could have been degrading and humiliating, but I was so stubborn in what I needed to allow for myself to live in my new normal, that the physical need mattered far more than my personal dignity.

Soon after, I began inviting visitors for the first time after coming to my parent’s home. It was terrifying at first. I can’t imagine what that’s like for them to remember me one way, dancing, hiking, laughing, and now, laying in a bed, startled by every sound and speck of light, grimacing in pain. Letting those I adore into my bubble felt impossible at first, but it’s another kind of exposure therapy that’s a lot more fun ! Seeing old friends is like a mirror through their eyes, and it can be tough emotionally, but it’s also exciting, and makes me feel more like the laughing, hiking, dancing me that they remind me I am still. My own mirror sees myself through the eyes of my ex now. Where there were once loving, gentle eyes, I see a look of disappointment and disgust. His eyes have always superseded others for as long as I can remember, but he’s not mine anymore, and I’m not his. I’m God’s, and in His eyes, I’m worthy, I’m valuable, and I’m fulfilling my life’s purpose by living it. 

My closest and oldest friend went through her own very difficult divorce in the year before I went through mine. They say, “God goes before us” and when I think of my sweet friend who has been walking her own hard path, checking in with me, and visiting often, I promise you that is true about the love of God lighting candles ahead of us. I’m grateful to be able to practice showing love to her at a time that I feel so empty of everything inside of me I used to be eager to give away. She has reminded me to keep pushing forward so many days that I felt alone. Having a friend who continues to tell you that you’re still the same person, you’re improving, and was willing to fight for me when I couldn’t fight for myself is more of an angel than just a friend. 

The short quiet visits I was only tolerating have turned into longer, more enjoyable visits I so look forward to. I started with home physical therapy, which has been an immense help in my progression, and I BELIEVE I’m going to be a functioning human being again- no matter how long it takes. While I do get frustrated with my body, I’m not worried about the time table, only that I make the goal. My parents allowing these people, and often strangers in and out of their home for me has been life-changing. I hate when people say that I’m better off without him, because now I’m able to utilize so many resources to improve, but I understand what they mean. I’m just thankful they are seeing improvement that I still need help seeing for myself. 

Every time I’ve wondered how I would pay a bill, how I could live without something I thought I needed, how I could go on without the people and pets I loved, God has always provided a solution, an answer, or a strength to live without. This consistency has lead me to rely on God coming through and has added to the peace in my spirit and courage to face the impossible with the safety net of the universe. 

Even though I’m not grateful I was forced into it, I’m grateful I was able to manage my own proceedings via electronic communication and courier to/from the lawyer. I had no idea how it would work with my condition, and just the thought of it regularly caused me anxiety. But again, God had the right lawyer in mind for me, who worked as my advocate, familiar with disability, even meeting at my home. I had a Power of Attorney to appear for me twice as my signatory, and my lawyer spoke on my behalf in my absence or with statements from me. Being disabled, you feel marginalized so often as it is. It’s as though you’re disappearing. Because of my condition, my movement, voice, independence, and freedom have been taken from me. I think that’s why it was so very important to me that I didn’t give away my privilege to speak for myself. The decisions, paperwork, and meetings were all so overwhelming, I was cognitively pushed to thinking in critical, complex ways I had not since the brain issues began. As much as the divorce may have damaged parts of my life, the process was a healing experience for my physical progress, and has propelled me forward in many positive aspects. I thought I would break apart as my heart broke more and more, but I’m proud of myself for getting through it, and managing my personal business.

Learning to be proud of myself is new. No one else is going to do that for me. I’m learning to encourage myself. No one else is going to remind me to take it easy and be gentle with myself. Giving to myself is a new concept, but I’m learning to view it as responsible and not selfish. I feel emptied of everything I was, and all I can do while I heal is continue on, pretending I’m a human being. The life I worked for and dreamed of is gone now. The slate is clean and I’m beginning to feel empowered and free to build back a completely different life. Some moments my heart aches, but at other times I’m revitalized thinking of the future of possibilities. 

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On the wings of the wind by Natalia Drepina

I started working at 15, graduated at 17, and left my parent’s home to travel the day after HS graduation… Now I’m back. I’m being cared for by my parents, learning to nurture myself, learning to walk again, my parents are making me food each day…it’s quite an irony! For me, this anniversary is truly a rebirth. 

How to Write a Letter to the CDC

PAIN PATIENTS, WE HAVE ONLY 10 MORE DAYS!
Letter to the CDC
Through January 13th, the CDC will be accepting comments from pain patients, caregivers, and family members regarding opioid pain management of adults before issuing the proposed prescribing restrictions.
If you are a chronic pain patient:
!!!YOU ARE THE BEST PERSON FOR THIS JOB!!!
I understand how intimidating this letter feels, and you might think there are better writers than you out there. But please remember, no one has YOUR STORY! Or your voice! Or your experience! We need as many people as possible to help the people at the CDC understand the necessity of pain medication (and good pain management physicians) for our quality of life and functioning.
Personally, I have learned that invasive procedures have proved to make my condition worse, and pain medication management along with what people consider “alternative medicine” or low impact treatment, have been my best options for living. What is your story? How do pain medications play a role in your life? How do they keep you functioning…or living?
I am including a packet below that should help you compose and send your letter, with the info you need to know.
***After you send your letter to the CDC, we would love to share it at Living with RSD on Facebook also. Please send it in a private message and we will repost it, with your name or anonymously.***
Thank you so much for being an advocate for all of us and working together with the pain community! This a historic. We have a chance to make a huge impact! Thank you so much!

Letter to the CDC
    Due January 13th
-IMPORTANT: you MUST list the Docket Number at the top of your document:
               – Docket ID: CDC-2015-0112
-Compose your letter in Word so you can see how many characters you are using
-click “Review” at the top of the screen in Word, and select “Word Count.” It will track your Characters. Stay within 5,000 Characters per CDC guidelines for comments.
-Using Word allows you to use Spellcheck before sending.
-Save your document regularly to avoid losing all of your great work.
-List your job, former job, current organizations you are involved with, and volunteer work you do (in person or online)
-If you list your conditions, remember that the CDC does not recognize all conditions and diseases (such as CRPS/RSD) so include the McGill Pain Index and/or NIH definition for your condition.
-When you are pleased with your letter, copy your document and paste in the comment section here: http://www.regulations.gov/#!submitComment;D=CDC-2015-0112-0001
-Or Print and mail your letter to:
National Center for Injury Prevention and Control, Centers for Disease Control and Prevention
DOCKET #CDC-2015-0112
4770 Buford Highway N.E., Mailstop F-63,
Atlanta, GA, 30341
-Here, you can read other patient letters to the CDC before submitting:  http://www.regulations.gov/#!docketDetail;D=CDC-2015-0112
-To get ideas about what you might want to say in your letter:  http://nationalpainreport.com/response-on-cdc-opioid-prescribing-guidelines-pain-patients-need-to-be-heard-8828943.html
-Excellent Facebook event forum for pain patients, answering questions in real time and giving advice regarding the CDC letters: https://www.facebook.com/events/1099948746690760/

 

You are the perfect person for this job! You CAN do this! Let’s all do it together!
A Complex Life

Living with Complex Regional Pain Syndrome

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Our resiliency has limits, but we can always become more resilient.

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Blog, Poems and Short Stories by Becky Allen

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HEALTHY LIFE & SUCCESS

Fightmsdaily

Living life with a chronic illness is definitely not easy. But I do my best to push through all the barriers this illness puts in front of me! In my heart and mind, I believe maintaining a positive outlook on all situations in life will carry us through to much better times! I hope you find the information that I provide both helpful and inspirational!

Miss Diagnoses

Life with assorted ailments

Pain Management Specialist in San Diego & La Jolla

Pain Specialist treating Intractable Pain & Treatment Resistant Depression

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Surprising silver linings in caregiving, food, art, style, travel, and more!

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