Tag: fibromyalgia awareness

Since allowing myself to reach out to others almost a year ago, I have found my community. I have found my people, my tribe! I didn’t know that I needed these people in my life until they appeared. Sadly, I had closed myself off by denying my illness was a part of me. So, I write this to you today for several reasons. One is for the people who haven’t allowed others in to their hearts. The other is to recognize and thank those that are now part of my heart. If you don’t know already, here is how I found importance in the chronic illness community.

Blogging Community

I have met so many supportive friends through the blogging world and the chronic illness community. How did I meet them? Well, one of the things that isn’t talked about much is that you HAVE to network when you start a blog. You have to follow other bloggers on social media and their blogs. This is important to not only make friends but to learn from others. There is always someone else who knows just a little more (or a lot more) than you. It benefits you to befriend bloggers for support and knowledge. I’m sorry to say, but it is rare that you are going to launch your blog and have immediate success without sharing your blog and returning the favor to other bloggers. I quite enjoy reading other bloggers articles and looking at their websites. It gives me motivation and sometimes ideas I hadn’t thought of.

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Social Media Community

If blogging isn’t something you want to do, then putting yourself out there on social media is the next best thing. Of course, you need to be careful as there are predators out there and they seem to prey on women and especially those with a chronic illness. That being said, I have met the most wonderful women on social media (some men too). These people are going through exactly what I’m going through or sadly worse. They give me strength when I don’t think I have any left. Just when I’m feeling down and sorry for myself someone will post something uplifting to remind me to keep going. I treasure the chronic illness community with all my heart (you all know who you are). Honestly, there are so many I fear accidentally leaving someone out.

Awards Community

When I first started blogging I saw bloggers say they were nominated for awards like the Sunshine Blogger Award, The Versatile Blogger Award. I soon learned that these awards were given by other bloggers. It is a fun way for us to get to know each other and recognize our work. I think I have been recognized for all of them now, although I haven’t written a post for each one as I have been too sick to focus on my blog.

WEGO HEALTH Community

This last month, I learned of an organization called WEGO Health. This is an organization that you can become a member and network with other people and organizations as a patient leader providing advocacy for your community. What is a Patient Leader? A patient leader is an advocate, who knows what it takes to navigate the healthcare system. It is also an influencer who is able to reach people in a community online. Lastly, a patient leader is an expert, who is a business professional who understands things from a patient perspective. Becoming a member of WEGO Health allows you to network with other industry leaders. So, if you are looking to up your advocacy game, this is the place to do it.

My Road to WEGO Health Nominations

When I learned about WEGO Health I immediately put earning this award on my bucket list. I know that I am very new to the advocacy world, but it doesn’t mean my heart is any less involved. Since I was young, I always wanted to do something to change the world. This feeling is in my blood and drives my goals today. I started this 6 years ago when I went back to college to work on my psychology degree. At 44 years old my true desire is still to become a psychologist and study human behavior. However, my body has other plans for me. Don’t get me wrong, I am still working towards that goal, but I may have to take another detour.

WEGO Health Endorsements

I have been nominated for the Best Kept Secret and Best in Show Blog awards. I do not know who nominated me, but I suspect. However, it means the world to me and it has pushed me to keep going with my advocacy efforts. It is not easy to keep going when you fight fibromyalgia on a daily basis, work full time, and in addition work towards a degree while building a blog and business. Like I said earlier though, my community pushes me forward. They give me the energy and support I need to get back up.

I would truly appreciate support from the chronic illness community now by endorsing both my nominations at the link below. Earning this award from my community and my readers is just the incentive I need to take myself to the next level and truly make a difference in the world.

Make a Difference Today

You can make a difference in the chronic illness community as well! If you haven’t subscribed to my blog yet, please do so below so you can see when there are opportunities to help your community. I also encourage all to visit International Support Fibromyalgia Network as they not only have resources but provide advocacy opportunities as well. Gentle Hugs to all my fellow Chronic Illness Warriors!

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

My husband and I have been coming to San Diego Comic Con for years. Sometimes he goes without me, but I believe it’s been about 15 years. He is an art collector and recently began writing comic books as well. He is well known and really this is more like a side business for him than a hobby. It seems every year I say I’m not coming back because it is so hard on my health, yet I end up going again. This is my story on Comic-Con and Fibromyalgia and how to balance both.

What is Comic-Con?

Comic-Con International is just what it sounds like. It is a comic book convention that is held throughout the world. The convention started 50 years ago and was more comic book centered. As Hollywood entered the scene, Comic-Con expanded to movies and television. The convention now has something for everyone and has grown to such massive popularity that it is very hard to even get a ticket sometimes. If you have ever seen the Big Bang Theory episode where they are trying to get tickets, then you know. My husband used to have several computers lined up to try to get in.

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What I love about Comic-Con

There are many things that keep me going back to Comic-Con each year. It is a lot of fun to be so close to celebrities that you admire. There are signings you can attend (if you are lucky and get into the lottery). I enjoy attending panels where you get a look at upcoming episodes and hear first-hand where the show is going. Unexpectedly, I also love talking with the comic book artists. Over the years my husband and I have had awesome experiences with artists. Although, I am not into comic books it is always nice to meet kind people.

What I hate about Comic-Con

They allow too many people to attend Comic-Con. This makes it hard to even get from one place to another. The lotteries they hold are supposed to make things more even, yet some people get nothing, and others get several things. Sadly, I think that Comic-Con has outgrown San Diego and it really needs another location that better fits its growth.

Comic-Con and Fibromyalgia

I have attended Comic-Con while having Fibromyalgia before, so I knew how hard it could be. I recommend getting parking under the convention center. This is also only on sale during a lottery. However, two years in a row we have purchased parking on EBAY. Parking under the convention center allows for easier access when you need to go and rest from all the people.

This year, I brought a walker, which was the best decision I ever made. The walker was hard to navigate in the crowds sometimes. However, it really came in handy more than it didn’t. I was able to sit down so much more often, which meant less trips back to the car. Since I had a place to sit, we were able to get into panels we might not have gotten into without the walking aid. In addition, my walker had a storage bin. This meant I didn’t have to lug around a heavy backpack.

My advice for Comic-Con when you have Fibromyalgia

• The first thing you should do when you get there is go to disability services between A and B. Here you will get a sticker put on your badge and you can have one person as your attendant. If you have questions always ask. For some reason they don’t seem to willingly give out information, but they will if you ask a specific question. An example of this is that ADA can get into the convention center through door B2.
• They put out a pdf of the program guide and exhibitors a few days before the convention. Looking through these and planning things out will really help.
• Have an outline, but don’t have a set plan. I say this because you never know for sure if you will get to do something or not. So, you have to have a plan B and C and be ok with whatever happens.
• If you want to get into Hall H (this is where all the really popular panels will be) then you either need to stay till 9:30pm or show up before 7:30am. This is when they hand out wristbands and also goes for ADA line.

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• If you need to a place to sit down or rent a mobility aid, then disability services is the place for that.
• Bring your pain medications and pain creams, you will need those.
• Prepare healthy snacks so you won’t be tempted to buy the junk they serve there. Although, I did splurge once on a pretzel.
• If you have anxiety like I do, breathing exercises really helped me so much. Breathe in counting to 4, hold for count of 2, breathe out for a count of 6, repeat.
• Again, you have to ask questions. So, always ask if there is an ADA line for something you want to do. There may be one and it won’t be advertised.
• If you are flying into the convention, or don’t have room in your car there is a FedEx service on location. This is very handy because you will be buying many things. In addition, you can also check your bags for a small fee. This will allow you to enjoy yourself without having to carry all your purchases all day.

Comic-Con and self-care

Even if you don’t have a chronic illness like Fibromyalgia, self-care is a must while attending Comic-Con. The reason I say this is because the con is 4 ½ days of early and long days. There is so much to do there from anime to video games. Not to mention, the convention has spread all throughout the area. There are things to do for miles and some things you don’t even have to have a badge for.

My self-care techniques include:

1. Proper nutrition: You are on vacation and you know your body, but I suggest staying as close to your normal diet as possible. I have IBS and it can have devastating effects on my stomach to consume things that bother me. I did this by bringing my own snacks.
2. Hot-Tub or bath: Using the hotel hot tub or just taking a relaxing bath can do wonders for your body. You are walking probably more than you are used to and pushing your body. So, bring your swimsuit.
3. Yoga: Every morning and evening I would do a few yoga poses to help loosen my muscles. I even do stretches in the shower with the hot water hitting me. Afterward, I apply CBD pain cream (linking to the cream I use). This really helps keep the pain down.
4. Routine: It can be a challenge to keep up your nightly or morning routine when on vacation. However, I think you will find if you keep your routine as close as possible you will find it relaxing.

Have fun

These are all the tips I can give you to have a good time at Comic-Con while trying to balance a chronic illness like fibromyalgia. For me and I’m sure for many fibromyalgia warriors out there, it is hard to predict how your body is going to handle an event like this. Almost every day I woke up feeling like I wasn’t sure how I was going to make it through. With the tips above I did make it and I even had fun. I had some hard times, but overall, I managed to go with the flow a little more than I usually do, and it was fun.

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

Meet Hilary Neumann! She has lived with Fibromyalgia and several other diagnoses for many years. In the video below she tells her story of how she handles living with fibromyalgia. Her strength and determination to live her best life has shown me how to power through when living with a fibromyalgia diagnosis. Listen to her story below:

Different Fibromyalgia Treatments

Hilary has lived with fibromyalgia for twenty years and has tried many different treatments. Today, she is trying “outside the box” treatments like aqua-therapy and massage. However, these treatments are not covered under her insurance. It is important that fibromyalgia patients have treatments that are accessible, not just available. This is why it is so important that we continue to let our legislators know how fibromyalgia affects us daily.

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How To Power Through With A Fibromyalgia Diagnosis

Hilary’s story is one I’m sure many of you can relate to. She lived with fibromyalgia for twenty years without an actual diagnosis. She sought out treatments. Really, trying anything she could to take control over her symptoms. All the while, living her life and raising her kids. The strength I saw in her while telling her story was very inspiring.

“I’m suffering from a silent disease. I hurt everyday. I hurt from head to toe. My brain fog, is actually my brain hurting.”

Family And The Importance Of Having Support

Hilary’s husband is supportive of her illness and just like us is also frustrated by it. It is so important that we have people around us for support. It makes me so happy that Hilary has someone in her corner to help her power through with her fibromyalgia diagnosis.

“I dont’ want to be treated different. I just want you to undertand. Don’t think that I’m lazy, that I can’t do it. I CAN when I feel good.”

Again, I want to thank Hilary for telling us her personal story. Also, for showing us that we can still live our best life, we just have to power through! If you would like to connect with Hilary you can do so through Facebook:

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

Meet Jessica Hooten, she is a fibromyalgia warrior who chooses to find the silver lining about her diagnosis. In this video she tells us all about how she was diagnosed with fibromyalgia, treatments she has tried and how she handles getting through each day. Secret: She does it by finding the humor in fibromyalgia.

Search For A Fibromyalgia Doctor

Jessica, like many of us has had sleep issues. She has been to a rheumatologist and a sleep doctor to try to ease her symptoms. Finding treatment and answers can be difficult and Jessica shares her journey with us.

“You don’t want to have something….but can they just find something, so we know what to do.”

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Finding a good primary care doctor has been what helps Jessica. She is lucky to have a doctor that is trying to understand her condition.

Fibromyalgia And Going To Work

Jessica works and tells us how hard it can be sometimes. Some days she struggles to get to work. Many of us can understand this feeling. How does she get through it? She just goes, because once she gets there she knows she will be ok. She is also fortunate to have understanding co-workers.

Day To Day Living With Fibromyalgia

Fibromyalgia has become so normal for Jessica that she often forgets that things that are going on with her are because of fibromyalgia. She states it takes her longer to heal from surgery than someone that doesn’t have it. She gives a lot of advice on what helps her day to day pain.

They tell me it is not progressive, that it doesn’t get worse, but I feel like it has.”

Staying Postive When Living WIth Fibromyalgia

How does Jessica stay positive? One way is that her and her husband joke about it with each other. She keeps in perspective that although she may be hurting, there are people worse off than her. She gives some advice:

“You have to just accept it.

“It’s going to be ok. You are going to have another good day…when it comes you will appreciate it.”

“Knowing what makes you feel better and doing those things.”

“You have to fight it!”

She has support around her and they keep it light hearted and help her find the humor in the day to day struggles. She is thankful but also does get depressed. The challenge of keeping fibromyalgia in perspective is a day to day fight. A fight that she is willing to do with a smile on her face.

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store

We talk a lot about how fibromyalgia affects women, but did you know than men can have it too? I want to introduce you to Ted Hutchinson, That Gaming Dad! We had a really good conversation about everything from getting diagnosed, living with fibromyalgia as a man and advocating for our community. He not only tells us how much harder it is to get diagnosed as a man but how to re-create your life after a fibromyalgia diagnosis.

Ted talks about what goes on behind the scenes for someone living with a chronic illness like fibromyalgia and CFS.  

Ted explains to us that he initially was treated for “acute injuries” and it took eight years to finally get diagnosed. His symptoms started with back pain and exhaustion.  He had to finally find a doctor who had experience with fibromyalgia to get diagnosed. This is when he realized there wasn’t a simple fix he remembers thinking, “cool….we can take care of this and I get back to my normal life, right? Unfortunately, that wasn’t the case and it has been a very long road.”

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For Ted getting off the pharmaceuticals and finding holistic ways to improve his symptoms has been key. The medicine he had been on had made his life worse than they helped. He has found cannabis and Kratom to be the most helpful for his symptoms. Ted tells me that Kratom is a cousin to the coffee tree and has different strains that have different effects. Some strains help with anxiety and depression, some are like an opiate replacement and some a coffee strain. It can be addictive and should be used in moderation. It comes in many forms like powder, capsules and leaves and can be digested.

 “My pain never goes away, but I can take the edge off it to at least know that I’m not going to overexert myself.”

“I was addicted to opiates and that was something that happened through doctor prescriptions…Cymbalta! I would rather go through opiate withdrawals then ever come off Cymbalta…that time of my life was some of the worst hell I ever felt.”

Living With Fibromyalgia as a Man

Ted tells us what it is like when there is a stigma around the man being the breadwinner of the house. “There is a myth that men can’t get this type of illness and it just isn’t true. He goes on to tell us how he sees the issue, “You just have to re-create your life. For me as a man, it was important to just put myself out there and share my story and just explain to people why this can affect anybody, really.”

Ted’s Advice On Living With Fibromyalgia

I think you will walk away from watching this video and feel inspired that you can still find a way to live a fulfilling life. I have given some quotes from the video here, but honestly they are best heard directly from Ted in the video.

“Everyone has a path…you’ve got your own journey to go on. For me it was my gaming, my advocacy, it was sharing my story…I can still do it in this capacity, just when I’m well enough, right to be able to share my story.”

I had to share this quote in its entirety as I felt it was so inspiring. This is Ted’s response to being asked what advice he would give someone with fibromyalgia:

“Have faith in yourself. Have faith that you have the capacity to be able to be able to overcome whatever it is that you have going on. Does that mean you are going to overcome and go right back to being the construction worker or working 50-60 hours a week? Maybe, maybe not who knows. But Have faith in yourself that you can re-create a life for yourself and create things that are positive influences not only to yourself but the people around you. So, while you may get this heavy burden that has been put upon you. You have a duty to be able to take that burden and hopefully be able to lighten that own load for yourself.  You yourself don’t’ deserve to have to carry that all by yourself. There are people out there that love you and people who do support you. You just have to be able to step outside your own self and look at the big picture and have faith that you can overcome anything. Not even in a religious aspect just faith in yourself. Believe in you!”

Advocacy

Ted has built a community with his video gaming on Facebook. His community talks about important issues while playing. He also uses this platform to connect with his kids and bringing those in the chronic illness community closer together.

“Even if you are sick, even if you have things going on you can still make a name for yourself and you can still put your name out there and you can still make a life. It just may be a different life than you were used to.”

Click Here to Visit the Store and find Much More….

For More Information Related to Fibromyalgia Visit below sites:

References:

Fibromyalgia Contact Us Directly

Click here to Contact us Directly on Inbox

Official Fibromyalgia Blogs

Click here to Get the latest Chronic illness Updates

Fibromyalgia Stores

Click here to Visit Fibromyalgia Store