Staying positive saved my life, and it will do so again.

Since May is Myositis Awareness Month, I felt a gnawing urge to write about my current status as I have not taken the time to do so in awhile.  The last time I wrote, I was in a very good spot.  I had been diagnosed with Lyme, my symptoms were controlled and treated, and I had gained all of my muscle back and then some.  Today I sing a different song, I have close friends and loved ones who don’t even realize the extent of what I am battling.  Why? Because I am no different a person with these terrible symptoms than I am without.  I have an invisible illness, and just a few weeks ago it started to take hold again.  I constantly try to hide it because I don’t want to be treated any differently than someone who is perfectly healthy.  However, I have decided I no longer want the burden of hiding it.  I no longer care if people judge me, I am still a kind-hearted and generous person… what my body decides to do to myself is simply out of my control.  Lyme has once again triggered my myositis, so I am battling two enemies at one time.  Throughout these past few years I have remained positive and I will continue to do so, it worked for me before and I have no doubt it will work again.  Within a few months, I will be back to where I was at and from what the doctor says, hopefully cured from the Lyme altogether at that point.

In case you were wondering… Yes, I still am going to the gym and taking a ballet class.  Yes, I am eating an even healthier diet than I ever would have in the past.  Yes, I can stand on my own two feet.  I still work full time, I still am maintaining a 4.0 in my graduate program, and I am not planning on stopping there.  I am very proud of who I have become and I have no shame in sharing any of this.  Why? Because it is real, this is who I am whether I like it or not.  If there are people who do not want to affiliate with me because of it, so be it.  I have learned that I have no time for people who think there is something wrong with me, or people who don’t realize my worth.  I am done being labeled and categorized.  I overcome battles every single day that others know nothing about.  I have gotten through this before and I have no doubt I will get through it again.  Staying positive and looking forward has been my key to success.

“Yesterday is not ours to recover, but tomorrow is ours to win or lose.”

– Lyndon B. Johnson

 

2016, The Year that Changed my Future

As I ponder the mystery of what 2017 has in store, I come to realize that 2016 was one of the greatest turning points in my life thus far.  In 2011, I stared my own mortality in the face, unsure if I would wake up the next day.  At that time, I believed that there could never be a more significant life-changing event that I would encounter.  However, here I am in 2016 knowing my life has now been altered for the better.  I am on the path toward a beautiful future.  At the start of the year, I had minimal hope that I would ever truly feel “normal” again.  My reality at the time was taking heavy doses of immune suppressants just to survive and acting like I was constantly fine while deep down my body was in turmoil.

2016 has been a year that has introduced me to a new doctor who has completely turned my life around.  I now am fully functioning, working full time while pursuing my MBA, going to the gym four times a week, taking a ballet class and maintaining a positive mindset about what I will now be able to achieve for myself in the future.  My path has been anything but easy, and I wouldn’t have it any other way.  I have struggled to get to where I am today and therefore have an unrelenting appreciation for what I have.  I have more importantly been given a second chance at a healthy and happy future.  Anyone who is fortunate enough to not have dealt with sickness in their life, please in the new year be thankful for your body, take care of it, it is one of your most prized possessions.

We all have a story… Mine? Strength runs deeper than muscle.

To put it in perspective, five years ago today I was at a point in my life where I couldn’t even lift my arm to touch my own forehead.  I had literally no muscle strength, yet deep down I somehow felt strong.  Although I was frustrated and terrified by my diagnosis of dermatomyositis, I felt utterly calm and fairly certain that I would get through it.  As anyone who is battling myositis knows, building and maintaining muscle is near impossible when the disease is not controlled, yet I believe there is always one thing that can be controlled and that is our will and determination to power through even the toughest obstacles.

My support system, my will to live, and my determination to overcome the darkest days of my life got me to where I am today.  In case you are wondering, after my diagnosis of Lyme disease I saw significant improvement almost instantaneously.  I have been on treatment for several months now and have regained all of my muscle strength, I am back to lifting weights, doing yoga, I will be taking a ballet class all while working full time and pursuing my Master’s degree.  How did I have such a drastic turnaround?… I didn’t give up, when the doctor wanted to put me on infusion treatments my gut told me that wasn’t the answer and I dug for the right treatment and seem to have found it.  Never give up on yourself, I had several highs and then lows again, but I still refused to let this disease define me.  I have to be realistic that I may someday experience another low, I can’t tell the future, but I know that even if I do I will have the strength and determination to get through it.

Everyone has their own story, everyone has a background that defines them and makes them who they are today.  When you meet someone remember this, even though they may not show it on the outside, there is a backstory, chapters that they may wish they could rewrite or just tear out of the book completely.  However, instead of tearing out those chapters learn to embrace them for how they have made an impact on who you are today.  I encourage you to tell your story as you never know whose life you may change in the process.  We are all human, and of course are not invincible, but I truly believe that mentally we all have the strength to get through whatever life throws at us.  My story has made me stronger, more humble and has made me realize that I have nothing to be ashamed of.  Yes, people may judge or criticize but that is just because they don’t understand, and that is a true reflection of their character, not yours.  Stay strong, stay positive and you will get through anything.

Am I Going Down the Right Road?

Today I stare out my window at the beautiful sunlight and bright green grass and think to myself I can’t wait to go outside and take a walk or just sit in the sun and enjoy it’s warmth.  My usual reaction would be “I’m too tired to go outside today, there is no way I could go for a walk”… or “Being in the sun would make me feel awful and I may flare more”… And in all honesty, maybe being in the sunlight would cause me to flare a little, but at this point I am willing to take that risk.  I want to push my boundaries and try to get back to my “normal” self (whatever that may be).  I can’t say I’m even sure at this point what normal is since it has been over five years since I’ve experienced normality.  Don’t worry, I won’t push myself to the extreme, I’m talking a half an hour in the sun tops to see how I manage.  I’m encouraged by the fact that I’m even thinking these things, my mind generally wouldn’t even consider this.

After having started my treatment for Lyme I had a few “downs” for sure.  I had that terrible herxheimer reaction involving my severe headache, and just last week I was getting awful chest pain (very scary to say the least).  However, this apparently can all be due to the Lyme bacteria dying off.  Both have subsided and I am feeling much better.  I have had many more “ups” then “downs” in these past few weeks then I have had in the past five years.  The ratio seems to be favoring the “ups” these days and I am okay with that!

I had a bit of a scare last night when I thought my rash on my chest may be reappearing, however this morning it is completely back to normal.  I have to remind you that I am on no immunosuppressant whatsoever other than my low dose of prednisone.  No more imuran or methotrexate, no infusion, just 7.5 mg of prednisone.  In normal circumstances I would be swollen out like a balloon if I didn’t have the immunosuppressant in my system.  Not to mention, I wouldn’t be going to the gym four days a week and seeing muscle gains on top of it.  Yes, I have been going back to the gym again and taking a few classes per week.  I am taking it slow of course and at my own pace, but I am amazed at what my body is accomplishing by just being on this antibiotic regimen.  I am experiencing no weakness or muscle loss, I am feeling stronger and finally feel like I am taking control of my body again.  I go in two weeks for my routine blood work to make sure everything is on the right track, and that will be the true test.  I truly am feeling so encouraged by where this path is leading me.  Yes, fighting Lyme disease is not going to be a piece of cake, but if I could just be fighting Lyme instead of Lyme and Dermatomyositis at the same time, I feel like I am taking one more step in the right direction… Fingers crossed I am on the right road!

Finally Some Progress

So it’s official… After having that lingering thought in the back of my mind ever since my dermatologist suggested Lyme disease may be playing a role in my difficulty recovering, I finally have a doctor that has ruled out other possibilities and confirmed from his experience and practice it is Lyme disease that I am dealing with.  Having the bulls-eye rash, a mysterious flu, strange allergic reactions, and all of these symptoms that don’t quite “fit” with dermatomyositis he is positive that is what I am fighting.  Apparently, the Lyme bacteria go into a “defensive” mode when the body is treated with immunosuppressants (which is what I have been on for the past 5 years) and the bacteria will in turn hide itself in other organs or the nervous system and will not show up in the blood.  This apparently is what makes the blood test so inconclusive, especially for someone in my situation.

I have now been on treatment for Lyme for about one week and I have posted the difference one week of treatment has made in regards to my rash.  I am amazed.  For any of you who are dealing with dermatomyositis, you know that the rash on the knuckles/nail-beds is one of the last things to go.  I still have a bit of a rash, but it is significantly better than the previous week.  I will admit that this treatment can be miserable.  After just a few days on the antibiotic, I had nausea, vomiting, diarrhea and a headache that I thought was going to send me to the emergency room.  The doctor gave me supplements that would counteract this “herxheimer” reaction and once I took some of the supplements I felt better almost instantaneously.  This wouldn’t happen for a stomach bug or virus.  That was when it really sank in that I did in fact have Lyme disease.  Without having that definite blood test coming back positive I of course had questions in the back of my mind… Is this really what I am dealing with?  However, after that experience and the knowledge and background of my doctor (who says he is on the conservative side when it comes to treating Lyme) I without a doubt know that is what I am battling.

All in all, you have to be your own best advocate.  I have seen so many doctors who have all been wonderful through my treatment for dermatomyositis, but with a disease that is so rare it is sometimes difficult to figure out what exactly may be the trigger.  Whether or not this treatment for Lyme will completely clear up the dermatomyositis, I do not know.  However, I do know that I feel like I am making a step forward rather than taking a step back.  I still have a long road ahead of me, and am not quite sure where it will lead but for now I am still remaining hopeful that when all is said and done I will soon be able to lead a normal life of a “20-something”.

 

Rare Disease Awareness

Today worldwide people are telling their story and spreading the word about rare diseases and how they are affecting real people every single day.  There are over 7,000 rare diseases according to globalgenes.org and 50% of those diseases have no foundation supporting or researching their disease.  This is when I feel extremely fortunate.  Even though I have been diagnosed with a rare disease, I at least have treatment options thanks to research and foundations investing their time and energy in helping others like myself.

Trying to spread the word about how important it is to raise awareness for those who are suffering with diseases that have no treatment options is vital.  One voice can change the world if it gets heard by enough ears.  I strongly believe that we all have to work together to spread awareness, even if it is only to friends and neighbors.

I sit here and think about how lost and alone I felt five years ago when I was diagnosed with dermatomyositis.  I felt like there was nobody out there who could truly understand.  However, I then did research and found foundations and different studies that had been done about my disease and it was then that I felt strength and connection.  I knew I wasn’t the only one, there were others who were fighting the same fight I was.  I joined support groups and had comfort in knowing I could connect with others who were dealing with the same illness.  I had somewhere to turn.

Those who do not have this option, who have no foundation and have no research being done must feel even more alone and overwhelmed.  Spread the word, knowledge and awareness is key.

Determination is Key

CAI sit here today and wonder where my life will be in five years… ten…or even twenty.  I don’t even stop to consider whether or not I will still be dealing with my condition.  To put it simply, I am determined I will not be.  I believe the mind has more power over the body then we realize.  Can I just think hard enough about not having my illness and it will disappear?  Of course not… But I can make conscious steps in the right direction to ensure I will be on my path to recovery.

Some may think it foolish to assume I will not have this chronic illness in five years time, and maybe it is.  However, I have dealt with it for five years already and I am not about to give in to another five without a fight.  My mind is determined to find that doctor who is passionate about helping me get past this, my mind is determined to build up my strength whenever I am feeling well enough to do so, my mind is determined to figure out what is triggering my flares so I can do everything in my power to stop them.

I always have known that I could never succeed unless I tried.  I think that is half of what is holding so many people back, we are afraid to try.  Fear of failure holds so many back, and it holds me back as well at times, I am aware of this.  Why do I let my fear of failure get in the way of trying?  I am letting my mind control my actions in a negative way, and I need to turn this around.  I am determined to turn this around.  I will no longer be afraid to reach out of my comfort zone, I will find what works for me and I will try whatever it takes to get there.

If you can do one thing for yourself today, tell yourself that your strength and determination will get you to where you want to be… no matter what stands in your way.  Take each day as a new opportunity to find new solutions, don’t be afraid to take new paths when the one you are going down isn’t leading you in the right direction.  As Albert Einstein once said, “Life is like riding a bicycle.  To keep your balance, you must keep moving.”