Friday, November 22, 2013
11/21/2013
Not sure even how to begin today. Has been two very rough days for me battling this. I want to put out there what these days have been like but not to gain your sympathy but maybe to help myself and others gain a little respect for the things that we go through on a day-to-day basis. For 25 years i've practiced occupational therapy and taught patients in my care energy conservation. But now being on the flipside and being the one who's body is making it necessary to conserve all energy I can't begin to wrap my head around the workings of our body. Two days ago the simple movement of turning a pepper grinder three times fatigued my muscles to the point where I needed to sit down and rest and not use my arms to eat. The support muscles of my joints that once held them together no longer have the power to and allow them to dislocate. Eating has become a dance of tremors that cause my spoon to keep the beat on my plate. The sheer energy of sitting without being propped is a luxury of 10 minutes. Standing or walking short distances is a must with a walker and extremely limited to only five minutes max. By the end of the day assistance is necessary to come from sit to stand. Again please remember I do not tell you this because I want you to feel bad for me I don't want you to feel sorry for me I just need you to understand that next time you're looking at someone who's smiling on their face and maybe you even saw them briskly walk by just that morning does not mean that their body now later in the day or even moments later isn't robbing from their movement. If we are up and out and about it is because we are a fighter and probably sometimes too much I know that is me I do more than I should. But at the same time I choose to live I choose to put that smile on my face and I choose to go out there into the world regardless of how I'm going to be judged. There are many new normals that will be coming along for me and one of those will be the use of a scooter. Will some people see a 49-year-old lady in a scooter who's overweight and think that I'm just lazy. Absolutely I see you all the time but through the help of my doctors and the encouragement of my family and friends I will be that person to choose to live, get in the Scooter and ride forward with that smile on my face. So I ask of you now to remember those simple gestures of compassion today when anyone walks, wheels or whizzes by. PLEASE, take that moment to make their heart dance because chances are the five people who passed before you did not. Everyone's heart should dance and just a small amount of compassion is powerful to healing. Thank you in advance for doing this for me. Luv to all
11/18/2013
Shame on you Aetna insurance. This is one weeks prescriptions from my specialist that you deny payment on most. Guess you know better how to treat this disease than him? Really, guess you'd rather pay for each hospitalization instead? Or you just gonna wait for the need of a liver transplant? We are not gonna take it. My doctor and I are coming your way. Hope your ready for a fight cause I'm blowing the curtain your behind and changing your sucky policies for all of us who you force to incur the financial burden in additionally to the physical. I'm disgusted with your compassion. Please like or comment so Aetna hears me loud and clear.
11/17/2013
This is the part of day that gets rough. Hard to understand how I lie around all day except to use the bathroom and yet my muscles fatigue. I can not wrap my head to comprehend but just have to accept. As the moments of the days movement cause my joints to slip out, I hurt but carry on. The body rules my movement but my mind will have to embrace my soul. I think for now; and I cry at my deterioration, but then pray for a different strength to carry me. I'm comforted by the hands of family who are my muscles but am consoled by those up above who I know are carrying me. My footprints in the sand are faded for now but my hope and faith in God is strong. As my footprints return to the sand I will pay forward the kindness shown to me ten fold. My dance today is lyrical but dreams of up'ing the tempo of the beat to the jive soon.
11/16/2013
As I struggle to fight this disease I am finding it is the small things that make my world easier. I should have known that more since I'm an Occupational Therapist, and I think I did more than most but living it these past weeks is like a lightbulb. Kevin just rocked my world (no, not that way, still to weak you naughty minds) by showing me how to use the microphone to type for me on texts, Facebook and e-mail. Who would have thought that moment of him observing my struggles and giving me a forum to communicate without shaking would "make my heart do the Samba.. Smiling big tonight, thanks hubby!!
11/15/2013
To tired to put my thoughts together yesterday but many ones to share. So hopefully this message makes sense. From an early age I learned by watching my parents that their joy was greatest when helping others. My father loved serving all aspects of the Elmwood fire dept. My mom was a teacher by profession but most gained knowledge through her unending desire to do special projects for others. Many times through sewing a costume, cooking, running parties. I watched them lovingly, compassionately care for ailing family members always with respect and gentle touch. Being different or having a flaw made them draw closer to you and the challenge met to serve. Not knowing then but do now, they are responsible for my passion in life to pay forward to others. That's actually my favorite movie ever "Paying it Forward". Please watch, cry and then hopefully let it drive you to do simple day to day good turns. When dealing with disabled people these small effortless gestures can brighten their day and make them feel human;
Get down to our eye level and look at us when talking
Touch is miraculous- reach out with a gentle hand on our shoulder, hand, arm. You can't imagine the healing power of those seconds of touch
Again a simple wink, smile, hello, nod as you pass by
"Please do not pity us it does not change our course, do not pretend our disability doesn't exist we've already wished those wishes, do not feel sorry for us as our disease is not who we are and I love and am not sorry for who I am. Instead embrace our symptoms of our disease as a part of us but not who we are. We are people with normal lives just as you. We may walk or talk or move differently but we all do it from under the same sky, stroll along side us with simple gestures of encouragement and support. Make our hearts dance even when our legs cannot"
Get down to our eye level and look at us when talking
Touch is miraculous- reach out with a gentle hand on our shoulder, hand, arm. You can't imagine the healing power of those seconds of touch
Again a simple wink, smile, hello, nod as you pass by
"Please do not pity us it does not change our course, do not pretend our disability doesn't exist we've already wished those wishes, do not feel sorry for us as our disease is not who we are and I love and am not sorry for who I am. Instead embrace our symptoms of our disease as a part of us but not who we are. We are people with normal lives just as you. We may walk or talk or move differently but we all do it from under the same sky, stroll along side us with simple gestures of encouragement and support. Make our hearts dance even when our legs cannot"
11/13/2013
Well, here it goes. Today will be a long one but I am ready because of all the support each of you has shown me. If it is more than you choose to know I am sorry and no offense will be taken if you need to defriend me. I will not judge you and accept that we all have to deal with life in our own private way. But here I am ready to break my barrier of disability and tell it all. Thank you for giving me the encouragement to do this!
I am battling two Metabolic diseases. The first is an extremely rare genetic called Glycogen Storage Disease, the version I have is XI. The second is called Mitochondrial Myopathy - if you remember from science class the mitochondrial cells run your body. Mine are mutated due to the absence of my bodies ability to make the ldh enzyme and to process many more. What in essence happens is my mitichondrial cells are now mutated and unhealthy from the attack of this disease.
Unknowingly I have had this since birth but somehow managed to keep it under control. In hinesight many things now make sense! Fifteen years ago that changed and my world turned upside down. Those who know me closely were aware as they could see the day to day changes it caused. I have spent the next fifteen years going from doctor to doctor when it would rear its ugly head to try to find an answer. Of course there were many anything from your mind plays many tricks on you to Multiple Sclerosis to fibromyalgia to unspecified myopathy to my families favorite - "your special or right". Our family learned to cope and we found a new normal, but it wasn't always good. Over the years I would have unexplained hospitalizations or severe illnesses which most people blew through. For me they would set me back for sometimes months at a time. My career in Occupational Therapy helped me so much as I knew how to accommodate disabilities but at times it was a lonely hard road of no professionals who could help.
While living in New Jersey I got closer than ever with the help of my primary physician. Dr. Keri Ingrassia-Squirres. She was the first to realize my odd illnesses were connected and began treating them aggressively and quickly when they came along. She saw me through several rough roads started to make connections to the immune insults.
During this time things were tight at home and I went back to work full time. This did not do my body well and insult after insult started hitting me hard. It was at that point in time I realized I could not continue in the profession I loved, it wasn't safe for my health. Things were also changing at home and my sons had grown and moved away. As a Mom I take great pride in the fact that I grew men who are independent and out on their own as I want them to be. But...with Kevin traveling for work most week and Chelsea not yet driving that left times in my life where I did not have the extra hands of three to help care for me when it was rough. I had a great support group of close friends, a few who knew, but the worries were mounting.
During this period of time my beautiful young niece was struggling with her own illness that eventually linked us forever and in many ways I owe her suffering to my new found diagnosis. She first met Dr. Ambrus from Buffalo General through a referral from a conserned physician who could not complete her diagnosis. She was also diagnosed with a similar disease. My sister questioned the doctor about me and he said, she needs to be tested, she asked another question and his answer was simple "She needs to be tested". No idea those simple words would lead to my "Angel on Earth". I knew then I need the help of family during my weak times and the help of this doctor and so one of the many reasons Chelsea and I moved to Buffalo as Kevin commutes each weekend to here until he finds a job closer.
I contacted this doctor through e-mail and believe it or not - he replied and followed that up with testing he wanted done before he even lay eyes on me. You can imagine this brilliant man mostly research based is in high demand. So it was almost ten months before the pieces of those tests were put together. He looked at my results and within thirty seconds knew the muscle biopsy tests he wanted to do. He referred me to a surgeon who in August of 2012 took a slice of muscle from my left leg that would change my world forever. The result wait is long but in October of 2012 I sat in the office of Dr. Juliann Ambrus as my dear friend Amy diligently was my ears and received my sentence. I had no understanding of what he was telling me but the relief of being heard and diagnosed was powerful to me. He gave me strategies and much more. Mostly he gave me hope and faith for a brighter future with just bad patches as I'm enduring now. He said these words to me that did change my thinking " you need to forgive yourself because you have done nothing wrong, this is your body doing this to you", I cried and continued with" I'm sure you have heard this was in your head or your just lazy but let me explain the people I see in my office. They are type A personailities, they go and go and work through the pain and keep it to themselves. If you were lazy you'd be home on the couch saying its ok I am tired and just live that way. I see people who know something is wrong and are mad they can't do more" Amy then stated "holy crap, that's her". You always need those light moments. So once again my new normal began.
Over the last year with his help I am on a supplemental regiment of about fifty pills and powders a day to trick my body into thinking it produces the enzymes we need to function. I take prescription pills to control the systemic failures it casues such as asthmas, apnea, reflux etc. I have learned to control the lactic acid burn by walking slowly at a snail pace, embraced the use of a handicap tag, nap my muscles two times per day flat in bed and most importantly resist the urge to broach my energy ceiling which only mutates the genes more. I have done Physical therapy, complete food restrictions which ahs helped me to loose 33 pounds in the last year. Amazing I didn't know my body couldn't use the fuel I was giving it. Believe it or not if you had seen me in the last month before October 20th you would have known my new not normal, "but normal to me" was better than I had been in years. My hope was great but that didn't last long. A simple virus that passed my way overnight turned into bronchitis and an ear infection. Most of us would breeze through it and believe me I tried...maybe too hard...but it got me and here I am today telling you my story. My body just kept getting hit insult after insult not being properly treated which lead me to a trip to the hospital and three day stay by medics. Not pretty for your 17 year old baby girl to have to handle. But she did and from there I have been blessed by the care of Kevin, Joann, Karen, Chelsea my extended family and so many friends. If you are reading this- you are one of those friends. Anyone I meet in life is a part of my soul and your kind wors, your acceptance and your support is empowering me to fight this whether it hits me hard everyday or every other year. I love to serve others and I hate to be served but accepting I need it right now will come. The only way I know how to end this is to just ask you to pay forward someone in your life with any bit of information I have taught you. Treat those we judge with respect and give them the benefit of the doubt. You are probably tired of hearing about my "dancing heart" but please go now and "Make someone's heart dance" as you have mine in the last many days of my posts. Don't just absorb it, embrace it and please go use it.
My love to all!!
Annie
I am battling two Metabolic diseases. The first is an extremely rare genetic called Glycogen Storage Disease, the version I have is XI. The second is called Mitochondrial Myopathy - if you remember from science class the mitochondrial cells run your body. Mine are mutated due to the absence of my bodies ability to make the ldh enzyme and to process many more. What in essence happens is my mitichondrial cells are now mutated and unhealthy from the attack of this disease.
Unknowingly I have had this since birth but somehow managed to keep it under control. In hinesight many things now make sense! Fifteen years ago that changed and my world turned upside down. Those who know me closely were aware as they could see the day to day changes it caused. I have spent the next fifteen years going from doctor to doctor when it would rear its ugly head to try to find an answer. Of course there were many anything from your mind plays many tricks on you to Multiple Sclerosis to fibromyalgia to unspecified myopathy to my families favorite - "your special or right". Our family learned to cope and we found a new normal, but it wasn't always good. Over the years I would have unexplained hospitalizations or severe illnesses which most people blew through. For me they would set me back for sometimes months at a time. My career in Occupational Therapy helped me so much as I knew how to accommodate disabilities but at times it was a lonely hard road of no professionals who could help.
While living in New Jersey I got closer than ever with the help of my primary physician. Dr. Keri Ingrassia-Squirres. She was the first to realize my odd illnesses were connected and began treating them aggressively and quickly when they came along. She saw me through several rough roads started to make connections to the immune insults.
During this time things were tight at home and I went back to work full time. This did not do my body well and insult after insult started hitting me hard. It was at that point in time I realized I could not continue in the profession I loved, it wasn't safe for my health. Things were also changing at home and my sons had grown and moved away. As a Mom I take great pride in the fact that I grew men who are independent and out on their own as I want them to be. But...with Kevin traveling for work most week and Chelsea not yet driving that left times in my life where I did not have the extra hands of three to help care for me when it was rough. I had a great support group of close friends, a few who knew, but the worries were mounting.
During this period of time my beautiful young niece was struggling with her own illness that eventually linked us forever and in many ways I owe her suffering to my new found diagnosis. She first met Dr. Ambrus from Buffalo General through a referral from a conserned physician who could not complete her diagnosis. She was also diagnosed with a similar disease. My sister questioned the doctor about me and he said, she needs to be tested, she asked another question and his answer was simple "She needs to be tested". No idea those simple words would lead to my "Angel on Earth". I knew then I need the help of family during my weak times and the help of this doctor and so one of the many reasons Chelsea and I moved to Buffalo as Kevin commutes each weekend to here until he finds a job closer.
I contacted this doctor through e-mail and believe it or not - he replied and followed that up with testing he wanted done before he even lay eyes on me. You can imagine this brilliant man mostly research based is in high demand. So it was almost ten months before the pieces of those tests were put together. He looked at my results and within thirty seconds knew the muscle biopsy tests he wanted to do. He referred me to a surgeon who in August of 2012 took a slice of muscle from my left leg that would change my world forever. The result wait is long but in October of 2012 I sat in the office of Dr. Juliann Ambrus as my dear friend Amy diligently was my ears and received my sentence. I had no understanding of what he was telling me but the relief of being heard and diagnosed was powerful to me. He gave me strategies and much more. Mostly he gave me hope and faith for a brighter future with just bad patches as I'm enduring now. He said these words to me that did change my thinking " you need to forgive yourself because you have done nothing wrong, this is your body doing this to you", I cried and continued with" I'm sure you have heard this was in your head or your just lazy but let me explain the people I see in my office. They are type A personailities, they go and go and work through the pain and keep it to themselves. If you were lazy you'd be home on the couch saying its ok I am tired and just live that way. I see people who know something is wrong and are mad they can't do more" Amy then stated "holy crap, that's her". You always need those light moments. So once again my new normal began.
Over the last year with his help I am on a supplemental regiment of about fifty pills and powders a day to trick my body into thinking it produces the enzymes we need to function. I take prescription pills to control the systemic failures it casues such as asthmas, apnea, reflux etc. I have learned to control the lactic acid burn by walking slowly at a snail pace, embraced the use of a handicap tag, nap my muscles two times per day flat in bed and most importantly resist the urge to broach my energy ceiling which only mutates the genes more. I have done Physical therapy, complete food restrictions which ahs helped me to loose 33 pounds in the last year. Amazing I didn't know my body couldn't use the fuel I was giving it. Believe it or not if you had seen me in the last month before October 20th you would have known my new not normal, "but normal to me" was better than I had been in years. My hope was great but that didn't last long. A simple virus that passed my way overnight turned into bronchitis and an ear infection. Most of us would breeze through it and believe me I tried...maybe too hard...but it got me and here I am today telling you my story. My body just kept getting hit insult after insult not being properly treated which lead me to a trip to the hospital and three day stay by medics. Not pretty for your 17 year old baby girl to have to handle. But she did and from there I have been blessed by the care of Kevin, Joann, Karen, Chelsea my extended family and so many friends. If you are reading this- you are one of those friends. Anyone I meet in life is a part of my soul and your kind wors, your acceptance and your support is empowering me to fight this whether it hits me hard everyday or every other year. I love to serve others and I hate to be served but accepting I need it right now will come. The only way I know how to end this is to just ask you to pay forward someone in your life with any bit of information I have taught you. Treat those we judge with respect and give them the benefit of the doubt. You are probably tired of hearing about my "dancing heart" but please go now and "Make someone's heart dance" as you have mine in the last many days of my posts. Don't just absorb it, embrace it and please go use it.
My love to all!!
Annie
11/12/2013
Well, I hope you're not tired of my posts but today is an important one. Had a disheartening experience today of being wheeled through a hospital lobby, mask on my face to protect me from further immune insult, up to my specialists office. It was obvious my appearance struck an uncomfortable core of those in the lobby, halls and waiting room. We tried to chuckle as we watched people stare, scurry away, move their seat or make faces. I am strong during moments that I am not scared but not all who receive that reception are. My desire is to teach the world some etiquette - "I will not put my head down and look away; I have nothing to be ashamed of. My disease is dictating my appearance but I am still who I am inside. I will look you in the eye and smile under my mask; I beg of you to smile back, nod, wink or say hello. That simple effort would tell those who suffer- you are just curious and do not judge. PLEASE next time you see someone different, think of me, pay them respect and make their heart dance!" Thank you
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