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🦋

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”.

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.

 

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.”

 

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.

 

 

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.

 

 

 

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.

 

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.

 

 

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.

 

 

 

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.

Caregiver Appreciation Day, 2015

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

About My Home Health Aid

“Take Care” by Soulshivers

I’ve started with a home health aid for the first time after considering it for a while now. Many people have asked me how it has been to have a home health care professional, so I will share a little bit about what the past two weeks with a professional caregiver have been like for me.

Nearly all of my doctors have suggested I hire professional help over the past four years of being bed bound from chronic illness, but both you and your family must be comfortable with that arrangement. Also, with my hypersensitivity to sound, light and worsening pain with speaking and movement, it might not have been conducive for minimizing pain when these problems were at their worst. Now that I can tolerate visitors at times and I am doing better with short, quiet conversations, I was curious to see how I would do with a professional aid. Also, I have needed more help recently, so I am very grateful to have an aid to assist me.

I have scheduled the aid to come in short shifts and she allows me to take lots of breaks, though I still end up sleeping for the rest of the day. I may start making lists for her the day before she comes so I don’t wear myself out or in case I wake up feeling too bad to communicate. I am still getting used to having someone who isn’t a loved one do things for me, but so far she has helped with things that I might not have asked for otherwise.

I was pleasantly surprised that my new caregiver walked into my room on her first day knowing all of my health concerns, special needs and requests. Even though I had been evaluated by a nurse prior to making arrangements, I assumed it would be a bumpy start- it wasn’t. She is certainly a professional! She is so sweet, kind, gentle, and very attentive. I liked her from the moment I saw her, and my family also likes her, which I was very happy to hear.

A professional caregiver can prepare meals, do light housework, laundry, help with bathing, dressing, run errands for you, take you to your doctor appointments, make phone calls on your behalf, or help you with special health needs you have arranged with them. If you are more mobile, they might act as a companion, going different places with you to make sure you are comfortable and have your special health concerns cared for.

Because this is a professional caregiver, I feel I have more independence and I am making more of my own choices again. For anyone who is being cared for by family or a spouse, you understand how important that is for your sense of self. With family members, my chronic illness issues and episodes can be distressing for them at times, and while I am so grateful for their willingness to help me, I hope that having an aid to help will also give them a bit of a break.

On the first day she arrived, she organized my room in a way that would suit me better, and moved a few things around for me (she is as quiet as a mouse). On the second day, she helped me with a sponge bath, put lotion on, and helped me change my clothes. Earlier today, she gave me a bath for the first time, changed my sheets and cleaned up my room. I was very anxious about the bath since that is one of the most difficult things I have to do apart from going the doctor, however she was such a great help. Aside from my usual after-bath fainting spell (which she handled like a pro), we both managed pretty well and got me clean! I have a lot more confidence going forward after today, and I feel she and I can conquer more difficult tasks together. The next time she comes, I’ve arranged for her to ride along with me and my father to my doctor’s appointment so she can see how he transports me from the bed to the car, then from the car into the Dr’s office- just in case she ever needs to take me anywhere.

I have big plans to get much stronger this year, so I’m hoping my new caregiver and I will be doing more and more things together. She is a lovely and compassionate woman, and I look forward to making her into a new friend!

When you say I do…

My husband has been my caretaker for the past (almost) 4 years since I have been bed bound. Before that, I was chronically ill for 7 years prior and used walking aids yet remained mostly independent and continued working, though life for both of us was constantly changing. Through 10& 1/2 years, illness builds walls that we continue to find ways to scale, breech, knock down, or peer through at one another despite the seemingly impossible circumstances.
Even though I often choose to discuss and focus on the things about my relationship I am most grateful for, there are multiple hardships being in a patient/caregiver scenario that are very personal between us.
If you are in a relationship and one or both of you has a chronic illness (like my husband and I), I encourage you to read this wonderful article from The Unbroken Smile’s blog discussing marriage and chronic illness.

She’ll Always be Baby to Him

Brett Williams “Isole”

She’ll Always be Baby to Him

He walks through the door to a woman on the floor. She’s sick now, and he never knows who he’ll be coming home to. The house was built with children in mind. They left a life of adventure behind to save and to plan ahead for a wonderful family instead.

She was still a girl when the illness took hold. But neither of them let go of their goals. And they kept looking on to a brighter tomorrow when all of thier visions would come into view.

More health concerns, the bills piled high, the doctors said she’ll get worse through the rest of her life. And the dreams that once made them laugh were fading into thier past.

Oh, but the one hope that they couldn’t ignore was to start a family so they prayed to the Lord. But her body took a terrible turn- the house went dark- their last dream (like her pain)- it was burned.

They believed that their love would always survive, but the emptiness was an angry kind that filled the corners of their home with doubt. Without the promise of a little one, dreaming just didn’t seem much fun for the couple who had survived everything–until this.

Now a grown woman is like his child and she wonders if taking care of her will drive him wild, but she keeps on praying love will see them through. The loss they mourn is another Chronic Pain that they must both endure, but Hope and Love they cling to just like glue.

-A Body of Hope

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This striking image is courtesy of artist Brett Williams. “Isole” is one of Brett’s chalk works. Please visit one of his pages to purchase an original piece for your home or a gift.

www.brettwilliamsart.com

Facebook/BrettWilliamsArt

Learning the Gift of Gratitude

Have you ever thought that you are the best friend you know? Are you the most responsible, caring, compassionate, shoulder-to-cry-on kind of friend who drops everything to be there for the people you love? Have you ever wished for a friend like yourself?

I used to think that. Although I so adored the people in my life, there were times when I felt some of the things I did for them went under-appreciated. When I had problems in my own life, when I needed someone to make me feel better, I felt empty handed. Sound relatable?

I was a doer, a giver, I needed to be needed. I set my life up so that I was the go-to person for all of my people. I was the Olivia Pope of my world. Even when I moved to a different state, within months I was the one person anyone who knew me could count on. I constructed a safety net for everyone else, but when my own life turned upside down in the form of chronic illness, I felt there was no one to lean on.

Even after illness set in, things did not change. In fact, I felt that no one had a grasp of anything I was going through. For the first time in my life, I was desperate for some care from others and it seemed that no one knew what to say or do for me. Looking back now, some people were generous, and a few did reach out to me. I think it’s because I never learned how to ask for help before, I couldn’t recognize a gift of compassion and I was too prideful at the time to see when people were trying to be there for me.

I was so programmed to say, “No thanks” and “I’m fine” when people tried to help me out. I think I probably pushed them away without meaning to. I didn’t fully learn the gift of receiving until later on.

Sometimes tragedy is like this. The harder things get, the more clarity we can find.

You get so accustomed to being self-reliant and needed by others for so long that when it is time to accept help from another person, it’s like a foreign object that you naturally repel.

People who cared about me wanted to be there for me, but I usually shut them down. There were those who never knew what exactly to do or say, but they tried to just be in my life. I know now that the people who stick around in uncomfortable times are keepers.

Letting loved ones know how exactly they can help makes the people around us feel less powerless. If you give your loved ones specifics, they can learn how to better help with your complex needs. Hints and mind-reading definitely doesn’t count.

I know from personal experience that receiving help and asking for what you need can be a humbling experience. It’s lovely to help others but it can be humiliating when you’re the one who needs the help. That is the first thing I had to try to accept. You will have anger about it…try not to take it out on those giving to you. Don’t say things like, “I’m sorry you have to do this for me,” or “you will get tired of helping me,” or “I can tell you don’t want to be doing that for me.” Don’t critique their attitude, or predict future resentments. Instead, lead with gratitude. Say “thank you.” Your appreciation makes others feel positive.

Gratitude isn’t only an emotion, it’s also a state of mind, and a form of personal expression. The great thing is you can choose to be grateful even at times you don’t necessarily feel that way.

You already know how good it feels to do for others. Learn to be a gracious receiver.

Remember, you are worthy enough to accept the very thing you do all the time for other people. If the situation were reversed, would you be there for your loved one in the same way?

It has taken me a while to learn that lesson. I am still learning… Those who give of themselves are always teaching me to be humble.

I had to consider why my life had always revolved around being helpful, yet I could not receive the help offered to me. To top it off, I was too prideful to ask for help.

When I was finally able to say “thank you” and mean it from the bottom of my heart without resentment, anger, shame or fear: gratitude swept over me and lit up everyone in my life like Christmas lights.

Before, giving and being needed was how I defined myself. Learning to receive showed me the love everyone around me had to offer.

This lesson has been such a challenge; I am still learning to receive and to appreciate the blessings in my life, but the gift of gratitude has been a life-changing lesson. I believe learning to receive with a grateful heart makes a person a more understanding, more compassionate giver.

People love you and are there for you, too. Maybe not in the way you want them to be, but they might be exactly what you need. You are worthy of their love and their help.  Please don’t miss out on receiving the blessings that God is trying to bring into your life.

If I Ask You For More: poem

Love Forever | by Maria Jose

~If I Ask You For More~

If I ask you for more, are you sure that’s ok?

Will you break into pieces?

Will you just blow away?

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If I ask you for more, are you sure that’s ok?

Will it eat up inside of you until your heart turns gray?

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If I ask you for more, are you sure that’s ok?

Would you think me a burden and pack me away?

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If I ask you for more, are you sure that’s ok?

If I’m not the same person, will you leave or you stay?

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If I ask you for more, will WE be ok?

Can you just take my hand and sit with me today?

–a Body of Hope

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Today is Caregiver Appreciation Day. Let those who have supported you along your journey know how much they have meant to you.

Love Forever | Maria Jose

Please visit Maria Jose’s Etsy shop for a wide selection of heartfelt multicultural drawings and unique gifts. Check her treasures out and purchase something for the holidays!

Thank Your Caretaker Day

thank you poster

This month is National Caregiver Month; November 13th, thank your supporters, family, nurses, and full-time caregiver.

When we are so focused on survival, pain and illness, we can feel as though we are going this journey alone. But illness always touches those who love us. They are strong for us and wouldn’t want us to know how they are effected by our pain, but it hurts them to see us suffering. Many carers and family members say that they would take on the pain of their loved one if they could. We of course would never want that.

In collecting stories, I tried to get contributions from caregivers; however, none volunteered. When I brought this up to my husband, my own full time carer, he said he understood why:

Him: “No offense, but I wouldn’t want you knowing how all of this has effected me. That’s probably why no one wants to share.”

Me: “You think they would be afraid it would hurt their sick loved one?”

Him: “Some things we have to keep to ourselves. It’s just better for everyone that way.”

Me: “I guess it’s the same reason I haven’t invited you or my family to subscribe to my blog. It’s not that I’m saying hurtful things about you. But I don’t want you knowing more about my pain after seeing it every day.”

So that’s as close as I got to a caregiver contribution. They are in the trenches with us. If we are warriors, then so are they. If our lives have changed without choice, then theirs have as well. The difference is that they can leave and we cannot. But if you still have people around, they have chosen not to leave, they continue to love you through all of this craziness with your health… then tomorrow, November 13th, please join me in saying “thank you!”

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In comments, please let me know how you said thank you to your caregiver and supporters. Post any special message about your caregiver for the world to see. We would love to hear it!