Acquiring blog readers is hard. Simple as that. At times, the vast technological universe that many of us partake in can make it difficult to attract those that are the target audience you are searching for. However, that involves you actively trying to attract an audience. When I started this blog back in January of 2011 it was for me to share experiences that were taking place at work, at home and within my day-to-day structure. I’ve blogged about my divorce, my job changes, working with other managers, fashion, sewing, dating, dancing, running and living with Fibromyalgia just to name a few of the most popular topics.
I started the blog as a way for me to get things off my chest that I wasn’t able to openly talk about until people started mentioning my blog. Placing links to my blog on my personal Facebook was a way for me to share with my friends and family what I was going though. During my marriage I lost touch with many people and have been trying to rebuild those relationships ever since. I thought that maybe if people had an opportunity to see all the pandemonium that was going on in my brain they would understand what had been going on when we lost touch.
Outside of my circle of friends it never occurred to me that there might be others out there that are interested in hearing about my sewing projects or management techniques. Who knew that my stories of being a 21st Century Gal would be that interesting to others? Oh yes, that’s right…my mother! Even at 29 it is still hard to admit that my mother is almost always right. See what I did there with the “almost” part? I’m sure there is something out there she might not be right about; such as biomechanical engineering or space travel.
It was my mother who started blogging before me and has shared her tips and tricks, so I guess I haven’t acquired these readers all on my own. I might make management sound amusing, but you should see what my mom can do with the topic of cancer. Never thought I could be laughing about cancer, but that’s how things work under her roof. Anything and everything has the potential of being funny. I’ll tell you what, it is rough knowing that as a teenager but quite amusing when you finally grow up and realize your parents aren’t as uncool as you once thought.
Thanks mom for sharing yet another life lesson with me. Check out her blog, The World According to Alexandra, if you’re looking for a good laugh. She even makes bodily functions funny instead of shamefully disgusting. Thank you to my readers who stop back regularly. For those of you who are just lurkers I invite you to subscribe to my blog and stick around for a bit. There are some big changes on the horizon and I can be you won’t want to miss out on them.
Calling all Fibromyalgia sisters and brothers! I’ve got questions and I’m hoping you have answers. How many of you work in a full-time, part-time or from an “at home” capacity? Each Monday I ponder how I’m going to survive my 50 hour work week since I can’t picture myself not working. Many people, and even a few that also suffer from Fibro, have let Matt and I know that all the stress in my current job is adding to the aches and pains. I’ve acknowledged that and each day try my hardest to remain calm and carry on. I’m drawn to industries that are innately stressful and fast paced. From what I’ve heard that’s everything I should be staying away from, but alas that’s just not going to happen so I’m accepting ideas. Do you have a good tactic that helps you continue on in your normal work field?
As I mentioned in a recent blog, the temperature in the office is way too cold for my joints so I keep a blanket at my desk to bundle up in. Oddly enough I fit in with the rest of the snuggies that everyone is styling around here, so no one has ever questioned it. Therefore, I still haven’t told anyone about the challenge I face each day. When I started my job I made the decision that I would keep my mouth closed as I felt my Director would see it as a weakness and immediately look for a way to get me off of the payroll. Even though I learned that my work week would include a mandatory 45 hour a week schedule I still decided it would be best to stay quite. Now I’m being encouraged to work closer to 50 – 52 hours a week, despite the lack of business as this is my slow season, and I’m wondering if even a traditional employee would speak up about how working that many hours in a slow season is silly.
Have any of you come forward and told your employer or HR department about your Fibromyalgia? How was your information received? I’m not looking to be treated any differently than a traditional employee. I appreciate being pushed to strive for more as that matches with my natural work style and determination. However, if I cannot justify how a traditional employee should be working 52 hours during a slow season then I cannot justify how I should be either. At what point do you speak up and do you mention that each of those 52 hours is harder for you to tackle then all of those around you?
My adaptability skills have allowed me to do my best to continue pushing forward no matter the job obstacle that is thrown my way. I think that has to do with the fact that I still possess the same passion and drive inside as I always have. All my years of dedication to my art form taught me that you can only improve by putting in the hours of work. In my mind I’m still up for the battle no matter the job ahead, but now there is a point where my body decides it for me that it’s not going to allow me to physically keep up with what my mind is pushing me forward to do. It’s never stopped me from performing my job, but it has slowed me down when it comes to physically moving about on occasion. On those days I tend to avoid my Director so he doesn’t notice my sluggish movements, but it made me wonder what others of you do if you haven’t told your employer.
Please share your stories, tricks of the trade, and any other helpful information that you think can potentially help another Fibro friend. I’m always happy to hear any helpful suggestions that can help not just me but anyone else that might stumble upon my little blog. Thanks Fibro friends!
Everyone who aspires to one day be a parent strives to bring a healthy child into the world. No one that I’ve encountered hopes to have a child that will be born with a challenge they will face for the rest of their life. At 29 years old it’s become pretty obvious to me, especially if you log onto my Facebook and look at anyone on my news feed, that most of my friends and family in a similar age bracket are going through their childbearing years. Everyone is wishing them their congratulations and hopes of their child being healthy and happy.
What if you knew that the chances were strong that you were a carrier of a rare genetic disease that could potentially affect your child’s vision. Would you immediately rush out for genetic testing to confirm that you are or are not a carrier of the disease? Would you roll the dice and take your chances that you’re not a carrier of the disease? If you find out you are a carrier would it affect your decision to have children if you know you will either give birth to another carrier or a child that is directly affected by the disease?
Somewhere in the midst of all these questions is where I stand. My grandmother was a carrier for congenital X-linked retinoschisis. She gave birth to three talented boys who all are affected by the disease and have varying levels of blindness. The flip side of the coin is that their visual impairment has not stopped any of them from being very successful within their respective professions. When I see how all three boys have adapted and pushed forward it’s almost enough to stop questioning anything on the subject. Until I come back to reality and realize that there’s a good chance I’m carrying the disease and my decisions affect how it continues on in the family.
Now 2 of grandma’s boys each had a daughter, obviously I’m one of them, and grandma’s other son had two boys. Luckily my male cousins have won the genetic lottery as a characteristic of the inheritance is that it cannot be passed to sons. However, my female cousin and I run the high and likely risk of not being so lucky. If either or both of us possess the genetic pattern then all it takes is one altered copy of the gene in each cell to cause the condition in any male children we would produce.
Just recently I learned that I can now be genetically tested to see if I am a carrier of the disease and that’s caused me to start asking some tough questions. Since I have trouble with the topic that you can now genetically chose the sex of your child, I am facing the fact that if I am a carrier for this disease then deciding to have children will continue the cycle. What would you do if you were faced with such a serious decision?
I’m a little behind on my update, but just a little over 2 weeks ago team “D.W.A.R.F.F. Awareness” participated in the Expedition Everest Challenge at Disney’s Animal Kingdom Lodge. It’s an experience I would highly recommend to anyone interested in a night of fun.
*Sorry for the photo quality on these. The only cameras we had were the one’s on our phones.*
The challenge consists of a 5K race with a few obstacles sprinkled throughout it and then a scavenger hunt throughout Disney’s Animal Kingdom at night. Once crossing the finish line you get to enjoy a few extra hours in the park to celebrate your accomplishment with fellow racers and a crazy cast of character friends.
Of all the races thus far this was by far the one that I was looking forward to the most (and not just because it was only 3.1 miles). It was a really exciting experience. Matt’s motivating pace managed to help me shave quite a bit of time off of my usual run times. We crossed the finish line for the 5K just a few seconds before the 36 minute mark and for me that is a HUGE accomplishment.
The medal was really cool. After running the Princess Half Marathon with me, I’m sure Matt was glad that this medal is a bit more manly. It has a fully functioning compass incorporated into it. He was like a boy scout playing with the medal while we waited in line to ride Expedition Everest. It seemed like the natural choice after conquering the challenge. I fully recommend this event to anyone just starting out with the Run Disney events. It’s fun, gives you a good taste of the atmosphere these events have, and you only have to make it through 3.1 miles.
Next up for us will be the Tower of Terror 10 Miler in September. Right now I’m adjusting to running in Florida in the summer. When I started training last year it was already starting to cool down, so running in the thicker humidity and higher temperatures has been a big adjustment. I’m bound to not let it deter me. Now that Matt’s helped me to decrease my per mile time, I’m really looking forward to seeing how my time improves for the 10 miler. This is where I cross my fingers and hope for my knee to hold itself together while I take on another longer race. I know I’ll have Matt there by my side cheering me on, or holding me up, so I’m eager to get back out there and take on another challenge. I’m fighting like hell through my Fibromyalgia challenges and refusing to give up!
Despite looking like a healthy 28 year old with an active lifestyle, I wake up each morning facing a battle with Fibromyalgia. After being diagnosed in May of 2011 I feel into a bit of a FIbro-funk and started feeling like I had lost a part of my identity. After over 20 years of being a dedicated active dancer it was hard to face the reality that my pain would never completely go away. One day I woke up and realized I was taking precious days for granted. I needed to get my butt back in gear and take advantage of what I’m so very lucky to have, so I set a hefty goal for myself.
On February 26th I donned my Livestrong apparel from head to toe and obtained my goal when I crossed the finish line of the Disney Princess Half Marathon 3 hours, 10 minutes and 4 seconds after crossing the starting line hand-in-hand with my most amazing boyfriend. We were just two runners in the sea of over 19,000 others who were all there to support the Leukemia & Lymphoma Society (LLS). Paired with all of our fellow runners millions of dollars was raised for a cause that is near and dear to my heart. This amazing organization has helped my family directly and I couldn’t think of a better first half marathon experience than one that would benefit LLS. If the Disney volunteers weren’t motivational enough then the LLS volunteers and fellow runners were there to help push everyone across the finish line.
Despite severe knee pains starting around mile 6, I achieved my goal of not giving up and finishing all 13.1 miles with a smile on my face. It truly is a motivational run when you see how supportive all the runners are. Women cheered each other on, inspired each other and my boyfriend showed me just how much he truly accepts me for who I am and all that comes with that. My Livestrong shirt was stamped with the phrase “Fight Like Hell” and it became my motto of the day through the pain and slight rain. I watched cancer survivors run to raise money for the organization that helped them each step of their way without any hesitation. We ran as team “D.W.A.R.F. Awareness” in an effort to “Dance, Walk and Run for Fibromyalgia Awareness.”
Having Fibromyalgia, I knew there was a chance that my body would be pushed to its limit in trying to complete a race that lasted multiple hours with strenuous activity. Despite the few tears that popped up around mile 9 from the knee pain I knew I had a mission. I was there to walk for those who couldn’t right now. With each step the pain was more and more debilitating, but it reminded me of all that my loved one experienced during his multiple battles with Lymphoma. I watched him lose his hair and his mobility, but he never gave up and I knew I was meant to do the same. Each step closer to the finish line was for him. His strength to wake up each morning and continue to fight for another day kept me moving. I wanted to make him proud and complete the goal I set for myself when I told him I would finish no matter what challenge I faced.
For those who wake up to the daily challenge of cancer, know that you inspire those around you. You’ve touched our lives and we see your strength, even on the days when you might doubt it yourself. I was fortunate to have an amazing boyfriend by my side to lean on for strength. He is my rock like so many of the other runners are to those they love that are affected by cancer. He held my hand, reminded me that nothing could stop me when I put my mind to it, and pushed me forward so I would achieve my goal. His kind nature, acceptance and understanding of my challenges helped me give back to a loved one who has always been there for me when I needed him. Without a doubt I would do it all over again and I intend to do so while I encourage others to do the same for this amazing organization.
It is that time of year again guys and gals. The time to be surrounded by our families and all the craziness that goes along with that is upon us. It is time to enjoy hot cocoa and the plethora of sweets that surround us everywhere we go. The tree has been up, the presents are wrapped and I’m still trying to vacuum all the glitter out of my carpet from the bows I chose to use this year. Nonetheless, it’s a time to sit back and reflect upon the year that is about to be behind us before the next one is off to a running start.
My life has changed drastically in the last two years, but I wouldn’t trade a moment of it for anything in the world. I changed my job, changed my car, and the company of those that surround me. For the last few years I lost touch with my friends and regretted each moment I missed out on. However, 2011 gave me the opportunity to reach back out and apologize for my distance. I am thankful that I did as it has reminded me how awesome many of my friends truly are. Those who welcome you back with open arms are the kind of friends you know that will be a part of your life for the long haul. While sitting around a table enjoying the brisk fresh air, just the other night, I was reminded how wonderful it can be just sitting around and talking about nothing with those who know you best.
I am thankful for this beautiful holiday season, for my friends whom I once again hold near and dear to my heart and for my family who supports me no matter how crazy I might seem some days. This is my very first holiday season that I’ll be facing with the knowledge of being diagnosed with Fibromyalgia. That’s another thing to be thankful for…my diagnosis. There are many health issues my family is facing amongst us, but the most important part is knowing what we are up against and learning how to handle the holiday season appropriately. This holiday season I’m thankful for each moment I get to spend with those I love and I urge you to consider what you are thankful for.
Are you thankful for your new bike that Santa brought you, for 8 days of Hanukkah celebrations you’ll have with your family, for your new boyfriend that fate led your way, or even the possibility that your most recent Rituxan therapy might be your last one? It doesn’t matter what you’re thankful for as long as you take the time to see how lucky you are and enjoy the holiday season. To those of you who are facing health difficulties or harsh economic times just remember that there is a silver lining in each situation if you will just allow yourself to see the glimmer of hope for even a moment. I wish everyone a Happy (late) Thanksgiving and hope that there are Happy Holiday’s ahead.