Reading the blogs of others who handle Fibromyalgia in their daily lives as well has really helped me to keep my head above the Fibro depression water line recently. Of course I am selective in which blogs and articles I read as I really want to stay positive in my way of thinking. Recently another Floridian wrote a wonderful blog that challenged me to list my “blessings” that have come out of my illness. At first I thought she must be crazy, but after thinking about it a little longer I realized learning about my Fibromyalgia diagnosis uncovered quite a few “blessings.”
I never would have imagined that a syndrome that is taxing and painful would uncover so many things in my life that I am so very thankful for. Since I was diagnosed in May of this year I’ve also learned a lot about those who chose to still be a part of my life and those who just pretend as if they are a part of it. Many days I’ve had my very patient boyfriend by my side, slowing down his pace and asking what he could do to help me as he knows I’m trying not to give in and let my Fibro take over my lifestyle. It has changed the way I do many things, but I still do them. It is funny how when you face something serious with your health you suddenly become more serious about your habits.
Today isn’t exactly one of my better days. It’s more like one of those days that you would just prefer to stay in bed and not move so that you can control the amount of pain experienced. However, I pulled myself together and am at work like usual. Days like this have a habit of trying to push my attitude down, but today I’m trying to remember all the good things that have improved in my life since being diagnosed. It hasn’t exactly helped the pain, but at least it is keeping my spirits up as I make my list of blessings and see how many things I am lucky to have around me. My pain might exist, but it has brought many other items of joy to my life that I am lucky to have discovered.
I now encourage you, as the writer of “Restoring My Soul” did for me, to list your blessings that have come out of your battle with Fibro or any other health concern that you’ve decided to not let bring you down. You’ll be amazed of the items you come up with that were brought forward by something that is typically not seen as a blessing in disguise.
Did you ever play with string cheese as a child? The fun was pulling it apart and watching as the cheese tear into strips. The day I walked into my doctor’s office I used string cheese to describe what my muscles felt like every time I moved. My doctor has kids so I knew he would immediately get a mental image of what I was feeling. My joints were on fire, my muscles were paying me back for every dance step I had ever taken during my 2 decades of performing but felt like they were ripping apart every time I moved, the headaches were increasing, I was almost bordering on being narcoleptic due to how exhausted I was, suddenly I found myself having no memory at all, the increasing pain in my abdomen was just getting to be too much and it was starting to feel like breathing was too painful to be necessary; welcome to a day of living with Fibromyalgia.
Although I was happy to find out what I was up against, I was heartbroken to hear that there is currently no end to the pain and exhaustion as no one knows how to completely make it stop. However, I had a choice to make…sit on the sofa and let it take over my life or start the battle and refuse to give up. I chose the latter and the uphill battle has been challenging but very rewarding. Just recently I started to fall back into what I like to call a “fibro-funk” and slowly let the dark cloud try to pull me back in. It has taken me a few weeks to see through the fog, but I woke up today and realized that I need to remember why I chose to battle against this.
On the day of my 25th birthday I ran my very first 5K. I did it just to prove to myself that I could and told myself I would take on a farther run in the near future. Well here I am, three years down the road, and I never completed that challenge I gave myself. It’s time to shake off the fog and set my sites on a goal once again. I’ve decided that I am going to start training again so I can once again complete a 5K and now take on a half marathon this coming spring. I have no goal race time in mind as just completing the race in one piece is what I strive for. In my world, where there are challenges just trying to get up off the sofa to get something to drink, completing a half marathon is an amazing accomplishment. I hope this means that I’ll continue to push myself so that the year I turn 30 I can hopefully take on a full marathon or maybe a bicycle race.
I plan to raise money for Fibromyalgia research during my runs as they are still searching for what causes this and until they discover that the chances of finding a cure are slim and fleeting. There is so little they know about the cause, symptoms experienced and treatment. I know that October is the month that we all focus on “saving the ta-ta’s” since, as my mother pointed out in one of her blog entries, it has a much catchier slogan. However, I am a perfect example of how the awareness of Fibromyalgia is slim. It’s time for me to contribute to the answers I demand on an almost daily basis and this is how I have decided to do it. I’ll be donning my purple, the official color for Fibromyalgia awareness, both in my clothes and the color of my face by the time I finish these races but it will be worth it every step of the way. In January Matt and I will be taking on a 5K and debuting as team “D.W.A.R.F.F. Awareness” and then a half marathon in February. We’ll be “Dancing, Walking And Running For Fibromyalgia Awareness” in 2012 and I hope that you’ll chose to support us on our endeavors.
The verdict is…Fibromyalgia. Yes, yet another odd health condition which I had heard almost nothing about in my 28 years of existence but in my mind I was just happy to have an answer. I laugh about it now but I remember telling my doctor “I just want an answer. I don’t care what it is. You can even tell me it is cancer and I’d be okay with that. We can make cancer seem funny in my family. That is something I can handle, but not having any answer at all is driving me nuts!”
After poking at my body, listening to me site specific instances of problems from my long written list and looking over numerous test results it was confirmed that the only way left to prove that it wouldn’t be Fibromyalgia was to treat it as if it was. That seemed odd to me until I went home and started researching what this was all about. I learned that there just isn’t enough known about this in the medical community to be able to diagnosis it without trying crazy tactics such as what my doctor was suggesting.
After making the decision to become more proactive about my pursuit for answers, I decided I had nothing to lose. If I tried the treatment and nothing changed then Fibromyalgia would be ruled out and we would be back to the drawing board. However, if it did work then we had an answer and I could begin learning of ways to live with what I was facing. Bless my boyfriend for being so supportive during this trial as I was an emotional and physical mess, but anyone who knows me well knows that isn’t all that different from a normal day in my life the last few years.
Almost 3 months later I can say the following: 1.) I have Fibromyalgia, 2.) Each day is a challenge as I never know what it will be like and 3.) My doctor is my hero for finally giving me my life back. For the first time in 6 years I have days where I feel like my old self again. It may not be every day, but I’ll take what I can get and embrace it when I can. My bad days are getting to be fewer and farther between, but when they strike they sure are debilitating still.
I still continue to do research and I believe many of the changes I’ve learned to make in my life are contributing to the success of the treatment I’m receiving. My boyfriend is doing his best to support and help me in every way he can. He’s been patient with me each day as he knows that things for me can change at a moment’s notice and I may suddenly need to head home during a day of fun. I am very lucky to have his support on this journey as I learn more about how to handle living with Fibromyalgia. I consider myself even luckier that my family has taught me to be such a strong-willed individual as I believe that is what keeps me going each day. Now if only everyone else understood what Fibromyalgia was and what it is like living each day with it.
To be continued…
My last bout of Mono was just a few years ago, but after both occasions I never really got back up to what I consider to be full speed for me. My immediate family and close friends have heard me repeatedly express how I just knew something was not right with me. This brought on several years of unsuccessful testing and possible diagnosis that later turned out to be wrong. These test are what actually discovered my second experience of Mono and that I have Pernicious Anemia. Sounds scary and serious but I found out it just meant I have a severe B12 deficiency and don’t have the ability to obtain it through food or vitamins so I get injections of the thick red goo instead. A little hard to stomach if you are afraid of needles like I am, but I’m learning to adjust.
After several years of receiving injections that helped some of my problems I realized that I was still battling others and at times they were getting worse than before. I am the type of person who will push for answers for just about anything and yet I realized I was just sitting by the wayside waiting for my doctor to call me one day with some kind of an answer to solve my problems. Well that day never came, so I took matters into my own hands and realized I needed to push harder. I picked up the phone, called my doctor’s office and said “I want to be referred to whatever specialist is willing to find out what the heck is wrong with me so I can get back to living my life.” Oddly enough, with the doctor’s office that always schedules my appointments weeks down the road, I was suddenly able to get an appointment an hour and a half from the point I muttered those words.
Now don’t get me wrong, I love my current doctor. He’s done a lot more than others to test and re-test until he could get some answers, but I was just looking for him to do more this time. I needed an answer and I needed it NOW. My symptoms were getting worse, I was barely able to get out of bed and I finally had done the ultimate sin in my world and called into work for my shift. I reluctantly accepted to take the same-day appointment and started the trek over to the coast to visit his office.
I waited almost an hour to actually see my doctor, which is fairly standard in his office, but I was glad that I did. As usual, he gave me his full attention from the moment he walked in the door. He was actively asking me questions, studying my past test results and poking at me but at least I felt as if I was being heard about my concerns. We discussed past problems and past failed diagnosis so as not to repeat trying treatment for any of those again. Over an hour later we had a possible answer.
To be continued…
What a busy blog hiatus this has been. For anyone who hasn’t heard yet, I recently left the world of theme parks and transitioned to another area of hospitality. After 8 years within the theme park industry this change has meant learning a lot of new ways to do things. I’m enjoying the challenge of learning new items and it has been exciting to learn a new subset of the industry. Of course it has also given me the chance to work with other departments that are predominately women, so that has been an interesting change as well. I’m sure I’ll learn some more from them over my time here.
About the time that I was interviewing for my new position I also admitted defeat to my doctor and told him he had to finally find out what was going on with my health. For those of you who haven’t been completely in the loop I’ll fill you in a little. Growing up I’ve always had weird instances of health issues. As a young child I had some unidentified virus that landed me in the hospital for several days. During my teenage years I had a habit of passing out at any given moment with little notice. Then came the very contagious stomach flu that one of my dance students was so kind to share with me. Okay that one wasn’t weird but it was a good transition into the next item on the list.
Next up was my infamous double case of Mono. During my years at the “mouse house” I came in contact with an insane number of people each day. I contracted Mono from a guest, it is a funny story actually that involves and adorable child and a French toast stick, and was told that once I managed to get through it there would be no chance of me catching it again. I contracted it during my Senior year of college while taking 21 credit hours per semester in an effort to get to work in the real world. Needless to say it slowed me down and made it quite hard to push through my school and work schedule, but I did so and all without taking time off to let myself rest. I know, it probably wasn’t the best tactic but I am a stubborn individual so what can I say.
Now doctors say that once you get Mono it is always in your system, however it becomes dormant. They also say that it is like chicken pox and a person won’t get it more than once. They were only 1/2 right about all of this. It is in your system forever, but in some rare cases it rears its head again and you end up with the full blown symptoms more than once. Hence, not quite like chicken pox. It didn’t surprise me when they said that I had it again or that it was rare for that to happen. After all, if something is odd, unknown or rare then there is a good chance I’ll experience it.
To be continued…
It seems like most work locations are trying to keep up with the “do more with much less” outlook on business by delegating much more to each worker. How do you keep up with your workload? It’s a hard question to tackle. I’ve watched many of my friends with a strict work ethic face this recently and it is time to admit that I’m facing this situation as well. For those with whom I’ve had the pleasure of working through their pregnancy, I will say I have the utmost respect for your drive. You continue handling your job while trying to not slow down in the least. For others who I’ve watched battle medical issues that are slowly tearing them down, more power to you for refusing to let it win and keep you from the job you love.
It is difficult to speak up and say that you need assistance when you have a fast paced job. It’s even harder when needing assistance is due to your battle with a health problem. Delegating tasks, that you don’t want to give up but have no choice, can be a tough decision to make. Now I understand where many of you are coming from. I appreciate that I was a part of your process along the way. Now, it is helping me make decisions about how to handle my job.
Whether you’re overwhelmed and over stressed or just needing to take a step back for the sake of your health, there is a point at which you need to voice your concerns. It has taken me a long time to figure out that I wasn’t admitting weakness by saying, “I’ve taken on too much.” In my pursuit to please those around me, I have learned that it is seen as a sign of diligence and is respected if you can handle the situation with class. However, learning how to handle it can be the true challenge.
I think it depends on your employer, but I’ve found that expressing your concerns to the correct person above you can get the ball rolling. Make sure your concerns are concise and that they don’t include any whining. If you’ve taken on too much then there is no shame in admitting it. Just remember that you’re bringing these details forward because you want to make sure that you continue to produce top quality products and you’re worried that the immense workload is going to reduce your level of quality. You’ll be showing your upper management your professionalism and respect for the company if you can express your concerns correctly. It’s time to waive your white flag, so be brave and take the first steps out towards regaining control over your sanity and/or health.
The expectations that surround doctor’s visits baffles me. We all know that when we book an appointment we need to add extra time into our schedule, an unknown addition to the time they have allotted us. We must show up early for the lovely ladies behind the desk who I believe secretly control the world with of all the power they possess. Lateness makes them balk. Yet although we arrived early, we will sit in the waiting room 15-30 minutes past our actual appointment time. Finally we are escorted into a meeting with the nurse that ends in a relocation to a private room where you’ll wait some more. We know this and yet we all endure it. If I kept people waiting that long in my job then I would be called unprofessional. If my handwriting was completely illegible then I would be called unprofessional. However, making people wait excessively and bad handwriting in this office makes you THE professional…the doctor.
I mention all of this as a supporter of the unusually lengthy amount of time that my doc is willing to spend in the room with each patient, listening and trying to figure out symptoms. I have been a patient in his practice for years and he’s always been happy to sit with me as long as it takes for me to explain my problem and for him to come up with a solution. Finally, after all these years I’ve come to the decision that it isn’t his fault that he’s running late. Because he’s not running late at all!
I think it’s the lovely gals at the front desk who need a wake-up call! The doctor isn’t going to change his way of caring for patients. I don’t see him limiting his time. So why is it that the ladies at the front desk haven’t caught on to this yet? The appointment time options are 15 minutes apart, but on my last visit I kept the doctor captive with my situation for 45 minutes. That means I used up my time and ran into the time of the 2 patients after me. I don’t feel bad for doing it, because I waited over an hour past my appointed time to see him. It is obvious, if you do the math, that maybe his allotted appointment times need a bit of adjusting.
I don’t know how to bring this up to the “goddesses of scheduling” that control my future appointment fate, but I think there needs to be a universal scheduling seminar for them all. I know that this is the not only office that experiences this situation on a daily basis. For now I will continue to pad my schedule for these appointments, but maybe I should quit my day job and start a national class on appropriate doctor’s office scheduling. Who knows, maybe that is the way to become a millionaire. As long as I don’t schedule a class on a day I have a doctor’s appointment!