When I was first diagnosed with CSS my world crashed down around me. My first feeling was relief. There was finally a name for why I was feeling so horrible and it explained why I was living with my cough from Hell. I felt happy and ecstatic that my symptoms were not just in my head but then the realization that my life would never be the same surfaced.
I began reading and researching and the information I found was scaring me. I honesty did not believe I would be around to see my kids graduate high school. In the first year, when no medications were working well enough and I was in one constant flare after another I began sewing memory quilts for my children because I really thought that I would not be around in person for that many years. I started sinking into depression. I really felt like after a course of toxic Cytoxan I will be better and all would be good, I would reclaim my life but that wasn’t true for me. There were many more medications I would eventually have to go through and even apply for compassionate care to receive a drug that was just in the clinical trial phase because my CSS was considered highly refractory.
About 2 years into CSS taking over my life I was out driving alone and I heard the song,” I Will Survive” by Gloria Gaynor on the radio. I started to sing at the top of my lungs with it and tears poured down my face. I realized that although this song was written about a man leaving a women and her realizing she would survive, it resonated with me and the fight I would have with CSS throughout my life.
When I finished my sing-a-long I realized I felt so much better. It was like a cleansing effect took over me and I knew, “I WOULD SURVIVE”. Yes, this song somehow stated how I was feeling….
It took all the strength I had
Not to fall apart
And trying hard to mend the pieces
Of my broken heart.
And I spent, oh, so many nights
Just feeling sorry for myself.
I used to cry,
But now I hold my head up high!
I was not mending a broken heart but I was mending a broken spirit. I realized that feeling sorry for myself was not my answer that I need to hold my head up high and go on….
Oh no, not I! I will survive!
Oh, as long as I know how to love
I know I’ll stay alive!
I’ve got all my life to live.
I’ve got all my love to give.
And I’ll survive. I will survive! Oohh..
Go now! Go! Walk out the door!
Just turn around now!
‘Cause you’re not welcome anymore!
Weren’t you the one
Who tried to break me with goodbye?
Did you think I’d crumble?
Did you think I’d lay down and die?
Yes… That was me Screaming at the top of my lungs for CSS to walk out the door. Css was not welcome here anymore and I would not crumble, I would keep on fighting. I WOULD SURVIVE.
This was a turning point for me. I fought for and received and experimental treatment (Rituxan) and I would go to every infusion knowing I Would Survive. CSS was NOT welcome anymore.
I will always have my struggles with CSS, I will always fight mind numbing fatigue and side effects of the medications I take for CSS. I will flare and maybe even end up in the hospital but I WILL SURVIVE. I refuse to let CSS take away my joy and happiness and my love of life.
A lot if happening in my life right now but I find myself backing away from things because I never know when I will flare (I do often). I make excuses and I shy aware from any long term commitments of my time or energy. I am always scared of letting people down or seeming like the ‘flake’.
I forgot about this song recently but this morning Gloria Gaynor’s Song came on once again on my car radio and it was the PERFECT timing. I needed to hear that song again (and sing it at the top of my lungs with closed car windows … of course) I realized that I need to go out and do things, and put myself in new situations. I need to stop being scared of committing to things due to my CSS because I WILL SURVIVE.
Here’s the lyrics for you to enjoy… I Will Survive by Gloria Gaynor
And if you promise not to laugh at the incredible 1970’s dance moves here in a version of Gloria Gaynor singing I will survive on stage in a dance club.
Posted in Uncategorized by karen in wonderland with .
OK, we will first say that this picture makes me look heavier than what I actually am…. Yes, my vanity is the first thing I think of.
I jumped at the chance to nominate my doctor whom I fondly refer to as my “asthma god”. Dr Torrano was the doctor that believed me when I stated my cough was not acid reflux and anxiety after I had been dismissed by 2 other doctors. He worked with me to find out what the heck was going on with my body and he ran the tests on the hunch that I had Churg Strauss Syndrome.
Dr Torrano has been there for me over the past 8 years and thanks to his watchful eye and listening to me has helped me catch flares and keep all my organs working. He understands that some days I come in with my prednisone ‘bitch’ on and others I am scared.
I have always felt angry that some of my other local specialists seem to dismiss him and not realize how much his care has helped me stay in control of my CSS and am now grateful I go to UCSF medical center to a Vasculitis Specialist who works closely with Dr Torrano on my case.
It was a big surprise when I was notified Dr Torrano was to receive this very first RED award. I was so happy for him, that he was finally getting recognized for the amazing diagnostician that he is. He was interviewed for the September / October VF newsletter and it is now available for public viewing.
Also I wanted to attach the nomination letter that I sent in for this very special doctor. Here is what I wrote — very hard to keep it to 350 words
My first cough and rash happened in Sept of 2006 during a home remodel project. I went to my GP who told me I had GERD and anxiety. After repeated visits he finally prescribed me an inhaler but basically told me if I just calmed down I would stop coughing. Funny thing is my ‘imaginary coughing’ cracked a rib.
This was NOT all in my head. I called an asthma/allergy office and after crying on the phone obtained a same day appointment. It was here that I meet my savior (aka my asthma doctor) Dr. Robert Torrano. . He walked in the room and even before meeting me put his hand on my shoulder and stated, “Man are you sick!” Then he sat down and stated, “Talk to me…” It was the most refreshing three words I think I had every heard. And he listened… really listened! Never interrupting, never judging… I suddenly felt like I was going to get better.
Dr Torrano ran test after test, never tiring, always willing to keep looking. He called me after hours and from his home phone to check up on me and constantly assuring me that we would get an answer. After 4 tireless months and countless prednisone tapers, His hunch was proven correct. I had CSS. He made sure I always went to the best doctors and followed up on every test even if he did not order them.
Once Dr Torrano spent an hour talking to me in his office when I told him I thought he should go because he was backing up other patients he answered… “If they don’t understand than they should not be patients of mine”.
His motto for my illness is to catch everything early to avoid any permanent damage. When nothing else was working for me He personally investigated the then experimental drug Rituxan and he made it his mission to make sure my rheaumatologist and insurance approved it and put me on it.
Dr Torrano is my ‘rock’ in the sea of uncertainty of Vasculitis.
Posted in CSS by karen in wonderland with 2 comments.