A is for Air Conditioning

For the A to Z Challenge, we will be discussing some fibromyalgia must-haves--things that often help us fibro warriors to deal with or decrease our symptoms or to make our lives a little better or easier.  Fibromyalgia is a complicated condition, which manifests itself in vastly different ways.  Some of these in my list may not work as well (or even at all) for some of you.  However, I tried to stick with the bare essentials, so you will find many helpful tips over the next month.

So, without further ado...A is for air conditioning.  I know many people in the U.S. are just recovering from a frigid winter, but summer will come and with it, hot, humid days.  I have heard that they are predicting an extra hot and humid summer this year in many parts of the U.S.  Consequently, I’m working away at creating my summer oasis--somewhere I can hide when the temps get too high and too unbearable.

I’ve noticed that I can’t handle extreme weather (cold or hot), and many of my fibro friends are the exact same way.  For many of us, hot and humid weather saps our energy, increases our headaches, gives us intestinal issues, and even may give us rashes.  So, it is imperative to have a plan to combat the summer heat and humidity.

Having air conditioning in your home can be perfect, too, if summer heat causes you grief.  However, it isn’t always possible to have air conditioning or the power may go out, so create alternative plans. There are many ways to help you stay cool: (1) set up a comfortable spot to relax in the basement. (2) Stock up on fans (or even misting fans).  (3) Keep your fridge and freezer full of cooling drinks and treats.  (4)  Jump into the pool, shower, or bathtub.  (5) Limit time outside during peak sun times and while excessive hot and/or humid.  Or (6) if the summer weather gets too unbearable, find a public air-conditioned spot (mall, restaurant, grocery store, loved one’s home, etc.) as your fall back spot to take a break.  With a little planning, we can all get the most fun and enjoyment out of summer despite the sticky weather.

May 12 Is National Fibromyalgia Awareness Day

Fibromyalgia has vastly affected my life for over four years now. However, it was not until last year that I realized that there is a National Fibromyalgia Awareness Day. I accidently stumbled upon it on Facebook because one of my friends with fibro shared a photo about it. Before I knew that such a day existed, I didn’t consider how important awareness days are to illnesses, especially chronic ones. But now I see that with so much misinformation and lack of understanding out there, every person with fibromyalgia should remember and share this date!

The more we get accurate info out there and the more we talk about our chronic illness, the more likely that those around us will start to understand and support us. It seems like everywhere we go people are talking about cancer, heart disease, and diabetes. But what about fibromyalgia? No, fibromyalgia isn’t a terminal disease, but it’s still a killer. It’s a killer of dreams, of careers, of friendships, and of relationships. Just because we technically can’t die from this condition, it doesn’t mean we should suffer in silence and not try to find a cure—or at least a treatment that actually works for every fibro sufferer.

Yes, I’m relieved that pain-in-the-neck fibro isn’t a death sentence, but I often feel alone and rejected. So many people think our symptoms are in our heads or can’t possibly be as bad as we make them seem. I am a homebody—not by choice but because fibro is robbing my quality of life—so I often feel like I’m kept out of sight and out of mind of the public’s eye. I don’t want to be famous or get pity for my medical condition. Rather, I seek understanding and proper medical treatment. There are still so many doctors out there that don’t believe fibromyalgia is real. And there are far too many fibro warriors that suffer alone because their loved ones fail to see how debilitating this chronic condition can be at times.

Let’s spread the word about fibromyalgia this National Fibromyalgia Awareness Day, on each future awareness day, and all the days in between. The first step to reclaiming our lives is helping ourselves, each other, and those around us to recognize and thoroughly understand this invisible condition. Let’s show the world that yes, we are struggling and yes, we are in pain. And let’s put a face to this invisible syndrome. Let’s show everyone that we are fibro warriors! We fight today and always for ourselves, our fellow warriors, and an end to fibromyalgia.

X...X-Rays, CAT Scans, and Blood Work--Oh, My!

Since I had a weaker immune system as a child, I have had plenty of experience with being sick and needing medical care. On top of that, I was a very active child and wound up with quite a few injuries that brought me to the ER. Still, nothing truly prepared me for the magnitude of the tests and procedures that were necessary before I was finally diagnosed with fibromyalgia. It didn’t take long before I started feeling like I was a lab rat or an alien specimen!

I’ve had EKG’s, x-rays, CAT scans, MRI’s, and more blood work than I ever care to remember. I endured a horrible spinal tap that required multiple tries. And I have been poked, prodded, and violated in more ways than I ever thought was possible. Fibromyalgia can look like so many other conditions and there isn’t a test yet for fibro, so I know that these were all necessary to help me get to the truth. Still, I long for the days when needles and doctors didn’t give me the chills.

If you suspect you have fibromyalgia and are just starting your journey to diagnosis, I wish you the best of luck. I know that this all seems so endless and uncomfortable now, but one day, it will become just a memory. No, you may never look at medical instruments or personnel the same again, but most of the negative emotions and procedures will fade. Most people with fibromyalgia have endured this long diagnosis process, so you aren’t alone. Just try to stay focused on the need for answers and remember that eventually this part of fibromyalgia DOES get better.

Some day, you will look back on all this as a necessary evil that helped you start the journey to reclaiming your life. Knowing your enemy is a large part of the battle. Once you know exactly what you are facing, you have a much better chance to find ways to cope and to improve your symptoms. What you endure today will help you create a better tomorrow, so stay strong, my fibro warriors! This shall pass before you know it.

Q...If It Quacks Like a Duck, It's a Quack!

Anyone with a chronic illness has hours and hours of medical appointments and tests under their belt. Sometimes we start feeling like a science experiment. I know in the thick of my fibromyalgia flare up, which forced my doctors to finally admit I truly have a medical problem, I was sick and tired of being a patient. However, I am still grateful that my doctors were patient and understanding through the whole process. Many of the medical personnel who helped me through this journey were truly caring and wanted to help me find answers. After years of doctors that simply ignored or even discounted my complaints, I am thankful that I finally found people who would listen.

I have run across quite a few nurses and doctors that never seemed to want to listen. Anytime I would voice a concern or offer a suggestion, they would look at me like I was a child or even maybe a little insane. They had the mentality that they were the ones with the degrees and experience, so their opinion was all that mattered. I’ve even met a few doctors that I swear only became doctors because they love to talk and feel important. After experiencing some painful mistakes by the hands of arrogant doctors, I’ve learned that doctors are not infallible and they do not know everything.

Consequently, I encourage you to play an active role in your medical treatment. It is your body. You know it better than anyone. And you must live with the consequences of any medical decisions. If your doctor suggests treatment options, try to do some background research before deciding which option is best for you. Also, don’t be afraid to ask your doctor about any alternative treatments that you may come across in your research. Come to your appointments with any questions or concerns you might have. It might be helpful to write them down in the weeks before your appointment, so you come well prepared. Finally, don’t be afraid to challenge your doctor’s opinion. If he or she is set on a treatment option that you are not comfortable with, seek a second opinion. It is your right to have a doctor who will listen to your concerns and who will do his or her best to work around those concerns.