Hi Purple Butterflies!
It’s almost Valentine’s Day! As a fellow spoonie, I know life happens. I can’t begin to count how many canceled date nights I’ve had with my husband. A lot of the time, my pain was the main cause of our changed plans. I have gone through all the emotions. Crying, screaming, depression, blaming myself just to name a few. I would love to be able to tell you that I have worked past the blame game. I still do it, just not as often.
I cherish my time as a member of the Fibro Blogger Directory. I love meeting people from all over the world, making new friends, and getting new information on Fibro awareness. As a thank you, I’m sharing three treats for every spoonie! Let’s get started:
February favorites: Everybody has a handful or more of their favorite things to do. On occasion, they vary from month to month.
My three February favorites are:
Tips to pamper: So, you want to go to a spa to relax? Maybe you want to treat yourself to a new book, or something else from your favorite store. There are also times when you really need to get away from it all. Depending on my budget, I may not be able to afford going to a spa. I may have to cancel my plans due to how I am feeling. If I know there’s a special occasion coming up, I extra work hard to save my spoons. In the past, I was horrible about conserving my energy. To my credit, I’m learning from the past mistakes.
My seven pampering tips are:
My February playlist: What’s Valentine’s Day without music? Last year I wrote 22 Heart Beats For All The Spoonies. It’s a great collection of songs for love birds or for those that are single. This year, I’ve created a list of Disney love songs. I am a huge Disney fan! Check these songs out:
No matter your situation, remember you’re not alone. Be patient with yourself. We’re only human and you’re doing the best you can. Give yourself plenty of TLC. How do you unwind or pamper yourself? Let me know if you choose to do any of the tips I suggested. Thank you for reading my blog today. Your support means so much! Find me on social media by clicking the logos below.
Till next time guys! Be well!
Chatting with Carrie (an intimate interview with Fibro blogger, Carrie Kellenberger)
Hello my purple butterflies!
Today I have a real treat for you. Meet my friend and fellow purple butterfly, Carrie Kellenberger. Carrie, first off, I want to thank you for taking time out from your schedule to speak with us. My followers may not know this but, you have been a health advocate and author at My Several Worlds - Advocating for Chronic Illness Awareness in Asia since 2009. You’ve worked at the Canadian Chamber of Commerce in Taiwan. In addition to this, you work at the Spondylitis Association of America.
Carrie: Hi Rachel. Thanks so much for having me with you today. What better way to start the new year than with an interview with one of my favorite people and fibro bloggers? It’s a pleasure to be here!
Rachel: You have such an interesting life! You are originally from Carleton Place, Ontario. You’ve lived in Changchun, Jilin Province, China, and you currently live in Taipei, Taiwan. Why did you make the move? I am sure while having a chronic illness, those moves were not easy. Can you share with us how you handled those moves? Tell us a bit about your experiences while making such a culture change.
Carrie: So this is a huge question that gets asked a lot and I’ll try to keep it short and simple. I was 27 when I decided to move to China from Canada. At that time, I was working in a DIY art shop in downtown Ottawa and I wanted to see the world before settling down. Back in 2003, I was meeting more and more people who had spent a year abroad teaching English and it sounded fun.
As an avid bookworm with many penpals around the world and a degree in Anthropology and Law, I have a strong interest in people and other cultures. I was fascinated by Asian cultures specifically and figured teaching abroad for a year would give me a great way to immerse myself in a new culture and learn more about myself. I wanted to spend a year abroad in Japan or China and then do some backpacking around Asia before coming home. I didn’t start that trip out thinking I’d be immigrating to Taiwan!
At age 27, I had health problems, but I was also in good shape and my health was in a good place so I figured I’d go for it. I didn’t give any thought to getting sick abroad. I have since learned through years of life experience that we can be pretty silly with our decisions in our 20s. I don’t even think I had extra health insurance back then!
Thankfully, my first year in China was great. My health problems become more apparent during my second year in China and I had massive problems with my back and left shoulder. Now I’m aware that it was arthritis and fibromyalgia.
But back then, I was working out a lot. I still thought everyone felt that way after working out. I ended up trying acupuncture in China (it didn’t work) and various other Asian alternative treatments to get some relief. None of it worked. Eventually, it worked itself out. By then I was singing full time on stages across China so I just filed it away as an experience and kept on going with my life.
I met my husband during my second year in China. He’s from Iowa. We loved life in Asia, but we didn’t want to stay in China, so we fixed our sights on a year in Taiwan so I could continue my Chinese studies. Subtropical island life was a big draw for us! We left China, backpacked around Asia for three months and then moved to Taiwan with our backpacks containing all our worldly belongings and started life in Taiwan.
Again, we never thought we were staying. But one year turned into two years. We loved living in Taiwan. We paid off our loans here and then somehow three years had gone by in Taiwan and that brings us to 2009 when my health started acting up.
The aches and pains I’d had from my teenage years and in my 20s were still there, but they were getting much worse. One day in early 2009, I woke up with severe back pain and grotesquely swollen knees. I was in an enormous amount of pain. We had to seek medical attention for that. It turns out that I had Axial Spondyloarthritis, which your readers might know as Ankylosing Spondylitis. You can read My Ankylosing Spondylitis Story here if you wish.
I remember my mom saying, ‘Thank god it’s not RA!’ But we had no idea AS was just as bad or what was coming. So we continued with our lives. I was on a cane and in a wheelchair for most of 2009 and after that, flares would come and go, but no one ever explained to me how serious axSpA is. It never crossed our minds to move home.
In 2012, we became business owners here in Taiwan. I run a company called Reach To Teach Recruiting and we help English teachers move abroad to teach English.
My arthritis was under control by that point. and I had no idea that it was even possible to come out of remission with inflammatory arthritis until 2014 when I started experiencing more pain. That was the year I came out of remission for the first time. I also got my fibromyalgia and MECFS diagnosis that year.
It was a terrible year and by then we were stuck here because we had a business to run. The strange thing is that now I realize how much I was doing. I was a new business owner and we were trying to build our business WHILE I was becoming slowly disabled. My staff did not recognize how serious it was. I don’t think they even clued into the fact that I was a new business owner that should’ve been enjoying building my business instead of being crippled while trying to build it. It was a rough time.
Rachel: How often do you see your family? Do you foresee moving back to Canada in the future?
Carrie: I haven’t seen my family since August 2019 and had planned to go home the summer of 2022, but I had a huge arthritis flare-up. It was my fourth time out of remission, and I was not well enough to fly. I’ve had to bump my trip to June 2023. It has been exceptionally hard being cut off from family and Canada during the pandemic. Not to mention the fact that flying is difficult when you are chronically ill, especially with fibromyalgia and arthritis. So I’m looking forward, obviously, to giving my mom and dad lots of hugs this year. But I’m not looking forward to the 30+ hour journey home!
As for moving back to Canada, I hate saying it but living in Canada or anywhere in North America doesn’t interest me. We really love our lives here. There’s no drama, no political unrest, living is cheap and easy, and we love it here. Plus I have access to instant healthcare here whereas in Canada, I’d have to wait three months for my OHIP to be reinstated and then find a PCP, which is next to impossible these days, and then wait two years to see a specialist.
My health is grumpy. I can’t wait that long.
Rachel: You have blog on social media and a website My Several Worlds. What got you into writing and blogging?
Carrie: I’ve been a writer all my life. I started with my grandmother who gave me my first journal at age 6. She encouraged me every time I saw her to add new ideas and things to my journals, so I credit her for getting me into the habit. Writers need to write every day, and I’d say I spend at least 1-2 hours minimum doing that.
I’ve got stacks of journals at home from before the Internet even became a thing. In high school I was into poetry and published my first poem at age 13. I was very blessed to have amazing teachers who fostered my writing and kept me going by challenging me to write about different topics.
I kept up with my journals in China, and then in 2007 I heard about Wordpress and decided to move my journals online. My goal in 2007 was to post something every day for a year and I did it! It took 3-4 months to get a solid presence going with MSW and by mid-2007, my site was listed as a best travel blog in the world.
I kept on writing. I got a job at a publishing house and was hired to write textbooks and reading material for readers here in Asia. During that time, I published over a dozen books. But my blogging was also picking up steam and I was starting to get work as a travel writer.
Then I got sick and realized I had spent all this time carving out a travel writing career for myself that I couldn’t continue with. I decided to switch gears and start writing about chronic illness and life abroad as a chronically ill Canadian. I was not expecting people to resonate with that topic at all. It turns out I had a huge audience, and my audience has continued to push me to this day.
Rachel: Tell us a bit about what your role was at the Canadian Chamber of Commerce of Taiwan.
Carrie: I love volunteering and it’s great to be able to give back to our communities. I started out as their Communications Director and was writing all their content. They still use all the marketing packages I wrote for them in 2014.
I was elected to Vice Chair within two years because I had a strong focus on our Canadian small business community in Taiwan. That role led to Chairwoman and I was with them for six years before I had to step down due to health.
Running my own business while managing board meetings once a month; attending government functions as a Canadian ambassador, and keeping things going for our main events such as our Canada Day festival, gala charity events, and Dragons’ Chamber really took a toll on my health.
I loved my time with them, but I was burning the candle at both ends and was way too focused on my work and the Chamber. You know the saying. No one gets it until they get it. And that’s what happened to me. I wish someone had told me to slow down or that more resources had been around back then.
Rachel: How long have you worked for Spondylitis Association of America? Please share with us what you do for them.
Carrie: The SAA was one of the first nonprofits to reach out to me when I started writing about my AS journey in 2009. I got to know their team online and was also working on establishing a nonprofit called Walk AS One at that time. We succeeded and got the nonprofit established and it’s still going today. But I ended up stepping down from that role because 6am board meetings were impossible on top of everything else.
Because I had been heavily involved in Walk AS One while writing my articles about axSpA, it was natural for everyone to stay in touch. The SAA team is amazing and they were the only people who were willing to send me information about what was happening. Their membership fee at $35 is worth every penny although they also provide plenty of free advice as well.
I’m still astonished to this day that they were willing to help me, a Canadian in Taiwan, despite the fact that they’re an American nonprofit. I really can’t speak highly enough about them.
I joined their team officially as a Social Media Ambassador two years ago. I attend conferences for them and bring that information back to the community.
For example, when I attend the American Rheumatology Convergence each year, I’m attending with 14,000 guests, but I attend virtually. There are dozens of topics to learn about, but I watch the presentations that benefit the SpA community and then write about it in an easy-to-understand format.
I release live updates for them across my social platforms and then I take the tweets and content I’ve learned about and create a mega post for MSW that helps my readers. It’s a win-win for everyone.
Rachel: You’re a fellow fibro warrior. When were you diagnosed?
Carrie I got my official fibromyalgia and MECFS diagnoses in early 2014 after I realized that the pain I was experiencing was quite different to my arthritis pain. Now I realize that fibromyalgia was likely there all along. I had mono at age 14 and always had strange pains that I now know to be fibro and arthritis.
It took the perfect storm for fibro to kick into high gear. That storm happened to be me running a business, having my brother pass suddenly in 2012; and trying to keep our business going through grief while keeping up with my other activities.
I somehow caught another round of mono in 2014 and we think that was the trigger for everything else that followed.
I remember working at a Canada Day festival in July 2014. I was there for 12 hours and when I came home, I felt very ill and exhausted. I did the right thing. I rested for two days and then decided to go to my regular weekly Zumba class. I ended up being struck with intense fatigue during that class and had to lie down in the middle of class. I made it out of the class and into the locker room and stayed there for ages. It took an hour for me to get up and walk back home which was literally a five-minute walk. I went to bed after that and I never recovered.
I’ve been very ill since and said goodbye to all exercise after that. Any time I did any form of exercise I’d have a PEM crash, and as it turns out, we think that Zumba class was a PEM crash based on the first PEM crash I had from the festival. I used up all my energy/spoons and didn’t know it wouldn’t come back. Now I know better and I’m careful with activity and my step count. My max is 3,000 steps per day or 30 minutes on my feet. Anything past that makes me sick.
Rachel: What chronic illnesses do you have? Please share how you cope with your diagnosis.
Carrie: I’m disabled and living with Spondyloarthritis (more commonly known as Ankylosing Spondylitis), Psoriatic Arthritis, fibromyalgia, MECFS, IBS, chronic migraine, and chronic tension-headache.
It's impossible to say how I cope. I do many things to help get through each day. I’ve covered everything from meds to alternative therapies, elimination diets, and more on MySeveralWorlds.com
Rachel: What is it like living in Taiwan with a chronic illness?
Carrie: This is a tough one to answer. I’ve touched on it above briefly because people constantly ask me why I didn’t go home when I got sick. But what people don’t realize is that I’ve immigrated here, and I’ve been here for 20 years this month. Taiwan is home.
It has been challenging to navigate a foreign healthcare system in Chinese, but I have quick and easy access to my rheumatologist. The longest I’ve ever had to wait to see him is two weeks. I get good care here.
Taiwan itself is not accessible and public awareness about disability is nil. It’s just not a part of the culture here. While I’ve seen changes with attempts to make things more accessible, it’s a well-known fact that city engineers don’t consult disabled people about accessibility issues which leads to many ‘accessible’ venues not being used at all because they don’t work. Public transpo is not kind to people like me, but Ubers and taxis are cheap. It’s a mixed bag. If you want to learn about living in Taipei with disability and chronic illness, I’ve written more about it here.
Rachel: What are some of your favorite things to do when you are not blogging or writing?
Carrie: Writing is my number one go-to activity as you know, but I’m also an artist with 20 years of teaching art classes behind me. I love art, although I’m nowhere near as gifted as you, Rachel. Have people seen your art interview for My Several Worlds? (Psst… If you’re reading, check out Rachel’s amazing interview and how she creates!)
When I’m not writing, you can usually find me with markers in hand or my nose buried in a book. I can’t draw worth a lick, but I’m gifted at ikebana, which is the Japanese art of flower arranging. This talent was passed down to me from my grandmother who was President of the Ottawa Garden Society and Ikebana Club in Ottawa, Ontario, Canada. My mom is also very talented, and her gardens are extraordinary. I like to think I have picked up their talents.
I have been designing and selling jewelry for over 20 years. My first art job was teaching people how to work with wire and silver, but I’ve also got lots of experience with knotting techniques, macrame, fimo (polymer clay) and more. Nowadays, my hands hurt a lot because of arthritis, so I color every night. I can’t handle coloring pencils because they require pressure for shading, but I love marker art.
I’m a creative person in general and my mom has always said that it’s remarkable how I can take something that looks like trash and turn it into something beautiful.
Rachel: What advice would you share with a newly diagnosed purple butterfly?
Carrie: First of all, you are not alone! It’s 2023 and there is so much more information available to fibromyalgia patients than there was 10 years ago. It’s also encouraging to see that rheumatology convergences are starting to include more information about fibromyalgia to doctors who are starting to take it as the serious disease it is.
My experience might be different to yours, but I’ve found that doctors rarely give life advice for fibro. They issue medications, but the number one tip that fibro patients MUST know is that you MUST change your lifestyle! That includes your diet.
I don’t take medications for fibromyalgia because of med reactions to what’s on the market right now. I manage my fibromyalgia with strict lifestyle changes, which included a strict sleep routine, eating well, implementing and acknowledging limitations, and above all, PACING MYSELF. Less energy means you need to hoard your precious spoons!
Additionally, studies show that the majority of fibromyalgia patients learn from other patients, not their doctors!
Reach out to veteran fibromyalgia patients and join some support groups. I run a group called Fibromyalgia and Ankylosing Spondylitis in Women and that group is very fun and easy going. You don’t need to have a diagnosis or even have both to join. There are loads of veteran fibro patients in this group that can help.
To newly diagnosed patients who are reading this interview or to those of you who suffer from fibro and simply want a friend who gets it, feel free to find me across these platforms:
Instagram (Books and CI): https://www.instagram.com/carriekellenberger/
Instagram for MSW: https://www.instagram.com/myseveralworlds/
Rachel: Carrie, once again I want to thank you for all that you've shared with us today. I had a lot of fun with this interview and I hope you I did too! Purple hearts and butterflies to you!
Carrie: Thanks so much for having me today, Rachel! Purple hearts and butterflies to you, my friend!
That wraps it up for this week guys! Thank you to all of my readers and followers for reading my blog today! To find more of my blogs, just click on the desired social media logo down below. Tell your friends! Tell your friends to tell their friends!
As always, till next time! Be well my friends!
Note: I am not a medical professional. If you are not feeling well, please seek medical attention.
Dear Purple Butterflies,
How do you know you are sick? This past week I’ve been feeling very bleh. I’ve had tummy troubles mixed with a bit of vomiting. I am thinking it may be the flu. I haven’t had any troubles today. Now obviously if I get worse or have a relapse, I am going to call my doctor. Where I live, if you go into the doctor not feeling well, it’s hard for them to assume it’s not COVID. I definitely appreciate their concerns and understand they are just taking precautions. I’ve always giggled when they ask me if I am experiencing any aches, swelling, or leg troubles. What I really would like to say is, yes I do! Followed by, please look at my chart. I have Fibro!
So, here’s the thousand dollar question. How do you determine if it’s just a flare or if it’s something more? I know I am not alone in believing that’s what is so dangerous about our condition. No matter what, always pay attention to the way you are feeling. Ask yourself, am I sick or is it my Fibro? It can be hard to make that call. This is why it is vital to understand the symptoms of Fibromyalgia. Let’s remember how our Fibro symptoms can feel like the flu or getting a cold.
Here is a rundown of Fibromyalgia symptoms:
In addition to this, I found this great bit of information called Are Your Aches From Flu or Fibromyalgia? It is extremely important as Fibro patients to keep our vaccinations current. My father recently had the shingles. I’ve always heard it is very painful. Unfortunately, he is still suffering from the repercussions. This year when I get my flu shot, I am adding on the vaccination for shingles. I know you can agree, I don’t need anything else causing me pain! In 2020, I was literally being tortured the week of Thanksgiving. When I was in the hospital the first time, I had no idea this was just the beginning of my appendix adventures. You might be thinking, the beginning? To understand what I am talking about, check out my blog When Fibro Meets Appendicitis .
I know it seems Iike every time we turn around we are going to the doctor. It can be very frustrating. Especially if you are not feeling well. All I want to do when I am sick or hurting, is stay home. Being sick is no fun, so I hope everyone is doing their part to stay safe and healthy. Thank you for reading my blog today! Are you following me on social media? For your convenience I have them listed at the bottom of this page. Simply click on the desired social media logo to be taken to my page. Tell your friends! Tell your friends to tell their friends!
Till next time! Be well!
How I Attack My Depression
Hey Purple Butterflies!
I have been going through a lot this month. Some of my medication is still helping me. Whereas there are others that aren’t doing the trick. I have been more nauseated over the past few weeks. I feel this is partly due to increased pain mixed with uneven sugar levels. All of this has put me in a bit of a funky depression. I fight it with everything I have. Yet it seems to creep upon me when I am at my weakest, i.e., in pain. My new Rheumatologist didn’t work out the way I had hoped. She was extremely kind and caring. The issue I had with her was that it was so hard to get a hold of her, get my medication refilled and make an appointment. Even though I have been going through all of this, I still have high hopes for 2023! I have set a health plan of action for the next few days. My husband and I are going to investigate Medicaid to see if that will better assist us with our needs. I will return to my Neurologist, so I am able to at least get my medications refilled. She, too, is a busy doctor. It’s just the price I pay for going to one of the best Neurologists in Dallas. I have mentioned this several times, but I refuse to settle with just any doctor. The difference with my busy Neurologist is that she has an assistant of which I could easily make an appointment with her.
What is depression?
According to the CDC article, Mental Health Conditions: Depression and Anxiety “depression is more than just feeling down or having a bad day. When a sad mood lasts for a long time and interferes with normal, everyday functioning, you may be depressed. Symptoms of depression include”:
Rachel’s Playlists on Spotify:
Rachel’s Favorite Movies and TV Shows:
I hope that you’ll enjoy my playlists as well as TV and movie suggestions. I wish all of you a happy 2023! Thank you for reading my blog today. Are you following me on social media? For your convenience, simply click on the desired social media logo to be taken to my page. Tell your friends! Tell your friends to tell their friends!
Till next time! Be well!
Lean On Me
Dear Purple Butterflies,
Lately I’ve been in a bit of a depression. Ever since Thanksgiving, I’ve been experiencing more flares than usual and spasms. Naturally, I have found that it is difficult to be inspired to write under those circumstances. I was lucky enough to get an appointment to see my Rheumatologist before the end of the year. Aside from the updated MRI’s they want me to have, my fingers are crossed that they’ll adjust my medications. For now, I’m soldering on with a brand-new entry. I am excited about sharing this with all of you!
As warriors, each of us have had experiences being there for each other. From online discussions, zoom phone calls, and virtual conferences, we’re all in this together. We’ve been a lifeline for someone else. We know better than anyone else what it’s like to have a chronic illness. Have you ever wondered what your family and friends think about on what you are going through? Intrigued by this topic, I interviewed my husband and four best friends individually, with the outcome of creating a blog about it. It has given me an insight into an “outsiders” point of view of thinking about my illness.
I conducted five separate interviews. The first was with my husband, Dale. A quick background about the two of us. We met while working at the same attraction at Walt Disney World. I’ve known him for eighteen years, while we’ve been married for fifteen years. For most of our relationship, my Fibro symptoms started getting worse. After a lot of online research, it was Dale who suspected I had Fibro. It was later confirmed with my doctors that he was correct.
“What is it like to have a wife with Fibromyalgia?”
Dale: “I don’t think it’s that different from having a wife without Fibro. I would say the only difference is being worried, wishful, as well as sympathetic. I’m worried for her possibly having a heart attack, wishful for a cure or at least better medication, and sympathetic that she has to endure pain daily. “
“How much do you know about Fibromyalgia?”
Dale: “I know Fibro is a chronic pain syndrome. Fibro is neuropathy with overactive nerves that send a signal to the brain that you’re in pain. A possible cause could be from some sort of trauma, at least that is my theory.”
“What is your worst fear about my situation?”
Dale: “My worst fear is that because of all the medication you have to take, it may affect your health and shorten the time I have with you.”
“If you could ask my doctors anything about chronic illnesses, what would it be?”
Dale: “I would ask if they knew of any holistic medicine that would help you.”
“If we met earlier in life, what would you change, if anything?”
Dale: “If we met earlier, I would catch you to keep you from ice skating when you blacked out, and keep you from having the plantar fasciotomy, because I have often wondered if they were the cause of your Fibro.”
“If you were to write a letter to your younger self about our relationship, what would you say?”
Dale: “I would tell my younger self to be patient. You will finally meet your best friend for life.”
“What do you miss the most, that we used to, that we can’t now?”
Dale: “I miss our daycation’s.”
“As my spouse, what is the one thing that frustrates you about my condition?”
Dale: “I feel helpless. I want to fix it and take away your pain.”
“How would you describe Fibromyalgia to someone who has never heard of it?”
Dale: “Fibro is like being set on fire while being electrocuted at the same time.”
“Do you have any questions for me?”
Dale: “How do you keep positive considering your daily ordeal?”
Me: I stay positive by distracting myself by reading, watching TV, hanging out with you and my friends, and of course Therapy Shopping!
I then turned to my four best friends, Jennifer, Amy, Camille, and Brandi. I’ve known Jenny and Amy for thirty-six years. We grew up in the same neighborhood. I met Camille twenty-two years ago while working retail at Walt Disney World. I met Brandi through Camille eight years ago. All these ladies have both witnessed what I go through both separately and together.
“What is it like to have a best friend who has Fibromyalgia?”
Jenny: “It breaks my heart to see Rachel in pain, let alone anyone in pain. I get that helpless feeling when I see someone in pain, so I pray for them. These bodies are like vehicles and breakdown.”
Amy: “There really isn’t any difference than any of my other friends. I just keep in mind you may have some limitations for something we may be doing.”
Camille: “It is honestly at times somewhat frustrating. The way it interrupts life, especially your plans. The frustration is at the condition and not with you at all.”
Brandi: “Having a best friend with this disease is heartbreaking sometimes. It breaks my heart knowing that such a young, vibrant person is limited by this disease. She is one of the strongest people I know.”
“Before my diagnosis, had you ever heard of Fibromyalgia before? If yes, what do you know about it?”
Brandi: “I knew what Fibro was before I met Rachel. I knew that it was a disease that causes chronic pain.”
Camille: “Yes, I had heard of it. What I know is that it is a constant random pain. Which makes life difficult to say the least.”
Jenny: “Yes, I heard of Fibromyalgia over twenty years ago. I know it’s muscle spasms and the causes are different for everyone. I have heard it can be caused by the nerves in the body.”
Amy: “Yes, I know a couple of other people who have it. It causes muscle pain all over.”
“If you were to write a letter to your younger self about our friendship now, what would you say?”
Jenny: “I would tell my younger self and tell Rachel to keep smiling and laughing like she already does. Laughter is healing. We all must keep moving and going no matter what may stand in our way. Life is full of challenges with lessons to be learned. I know this very well from my struggles and challenges in my mind, body, and spirit.”
“Get busy living or get busy dying.” – Morgan Freeman, “Shawshank Redemption”
Camille: “I would tell myself that I have an absolutely amazing best friend, who is worth more than money can buy.”
Brandi: “I would say to that there isn’t anything that I can do to help, but to be there when she needs someone to just listen.”
“What advice would you give me?”
Amy: “I know there can be some physical limitations with Fibro, but don’t let it control your life.”
“How would you describe Fibro to young children?”
Brandi: “As a teacher, I would explain to my kids that it is something like if you were to touch a hot pot and burn yourself, but the pain stays with you always.”
Jenny: “I would describe Fibromyalgia as a muscular spasm condition that can be triggered by certain stress for different individuals. It causes constant pain and can only be less with strengthening the body and relieving stress.”
Amy: “I describe it as it’s something that can cause the person to be in pain.”
Camille: “It is a sickness that can make you be in pain every day.”
“Do you know of someone else that has Fibromyalgia or a chronic illness? If yes, what do they have?”
Jenny: “My mom has Trigeminal Neuralgia. It is a nerve in her jaw that flares up with excruciating pain. It’s a chronic pain and worsens in the winter. She’s not sure how she got it but uses Chinese herbs for pain management. She takes prescribed medication from the regular doctor as a last resort, so she doesn’t become dependent on it. She also must apply heat and be in a quite atmosphere. She says the flare ups come when a stressful event happens and when the weather changes to cold. She notices eating healthier anti-inflammatory foods help too. I also worked with a hairdresser that has Fibro. She was in constant pain but loved her work and didn’t let it get in the way of her life. Acupuncture worked for her. I have several clients as well with Fibro and they are taking physical therapy.”
Amy: “Yes, I know a couple of other people with Fibro.”
Brandi: “Yes, growing up, I remember my grandmother having chronic headaches.”
Camille: “Yes, I know one other person who has Fibromyalgia. I know multiple people with mental health issues.”
I want to thank Dale, Brandi, Amy, Jenny, and Camille for taking the time to answer my questions. I am lucky to have such caring, important people in my life that take an interest in what happens with my health. Not everyone can say this, which reminds me that I am blessed, and I am not alone. Thank you for reading my blog today! Are you following me on social media? For your convenience I have them listed at the bottom of this page. Simply click on the desired social media logo to be taken to my page. Tell your friends! Tell your friends to tell their friends!
Till next time! Be well!
Love Your Scars
Dear Purple Butterflies,
Are you like me and have had multiple health tests, surgeries, or hospital stays? As a parting gift from those visits, you are left with scars. Did you ever conflict self-harm upon yourself and know you want to cover it up? Are your clothes able to hide your scars? Have you ever wondered what you could do about all of this? Ever since my teenage years I have been poked, prodded, and had more hospital visits than I care to remember. However, I never had any scars because of them until recently. After last surgery, my doctor advised me about one idea. Most recently it was my husband who found an interesting link for me to check out.
Consider cocoa butter or shea butter: Do you regularly apply lotion to your skin? I love buying lotion from Bath and Body Works! I feel just like a kid in a candy store again walking into their store. I want one of just about everything. Sadly, I could not find a product on their site that had pure cocoa. The lotion was always mixed with something else, and I am hesitant to try it. I am a pale skinned female so naturally any dark marks or scars on my body are going to show up quite well. During my two-week post op examination, my surgeon recommended cocoa butter. While doing some investigating on my end, I found all kinds of different opinions from sites. Benefits of Cocoa Butter on Scarring was one site that I stumbled upon; As well as from the Vaseline website I also found Cocoa Butter and Shea Butter Benefits: Facts and Uses. You get lots of helpful tips from both sites. I found a Vaseline Intensive Care Cocoa Glow Body Lotion With Pure Cocoa Butter on Amazon. It has pure cocoa butter in the ingredients.
Get a tattoo to cover it up?
Since I can’t see your reaction to this idea, I can only bet I am getting a lot of mixed reactions. My first reaction to this was “Cool!” Ever since my first tattoo back in 2004, I have been playing with the idea of getting another one. My Fibromyalgia worsening has put “a hitch in my giddy up,” for me to move ahead with my plans. My creative side can’t seem to stop looking at cool designs wondering if I should grin and bear it. I’ve spoken to other Fibro warriors who have given me food for thought on their experiences. Knowing that they were able to do it has helped some. What about covering your scars with one? My hubby was perusing Facebook one day and came across 34 Scar-Covering Tattoos With Amazing Stories Behind Them. What a neat idea to love your scars! Inside this amazing post, you’ll find all kinds of ways people have coped, accepted, then finally got imaginative with their scars. I adore image #3 One Word Next To A Spinal Surgery Scar. It says “Strength.” It embodies what purple butterflies go through every day. If I were to get one, I would consider this one. The reality soon hit me of where my scars are. They are on my tummy and lower back. For me, these are not areas I wish to have a tattoo. Before you get a tattoo, please give these a glance Body Art: What You Need to Know before Getting a Tattoo or Piercingand Tattoos: Understand risks and precautions. I don’t want to discourage you, but also want to help you be safe. For some of you, the scars you have are reminders of your life being saved. The time has come to treasure them.
Even though I won’t be getting an illustration over one of my scars, I promise to show and share my tale when and if I do get another tattoo. Did you ever cover a scar with a tattoo? What does it look like? Please share your design and experience in the comment section. Thank you so much for reading my blog today. Do you want to keep abreast of my latest posts? Why not subscribe to my website? Tell your friends! Tell your friends to tell their friends!
Till next time!
About the author:
Rachel Barclift, has been suffering from Fibromyalgia for many years. She went to the doctor, never finding any answers for years. She went to one doctor who told her the pain was all in her head. In 2011, she finally found a doctor that believed her! She was officially diagnosed by her rheumatologist and she was so relieved! She writes blogs in hopes to help others find positivity.