Friday, May 23, 2014
Friday, May 16, 2014
FIBROMYALGIA AND ME/FATIGUE SYNDROME
This settles it. My next major ride is going to be directly for ME/CFS & FMS awareness. Being that I have been diagnosed with both since I was a teenager most people who know me or get to know me get introduced to the illness' if they haven't been already but awareness doesn't seem to be enough. We can talk all we want but if nobody is interested then nobody is going to become "aware" and if the general public does not become aware of just how devastating these diseases can be then it's going to take forever for Science to get anywhere near finding a cure. Meanwhile thousands upon thousands of people will suffer severely daily, some even paying with their lives.
For whatever reason some medical professionals, more so than not (although that tide is slowly turning) are in denial about the severity of these diseases, some even refuse to give them any validation at all. I've known of doctors with this attitude who became sick with it themselves and their peers, knowing how disbelieving they were, still labeled them as psychosomatic. Is that ridiculous or what!?
Trust me and the millions of others, it's real, very real,l very upsetting. Here is just a small example of what happens. I was visiting family in Ohio when I began having horrible abdominal pain. Nothing helped. I suffered the ride back to Indiana and went to our doctor who immediately dismissed it as just another symptom of my CFS. Now one of the skills I have developed pretty well, admittedly not perfect but pretty darn well over course of living with this most of my life is recognizing when it's fibro muscle pain or not and I knew this just did not feel right. It felt more internal if that made sense? So I saw a different doctor who immediately said "Well that sounds like gall bladder. Has anyone checked your gall bladder?" I told him no and he sent me right over for an ultrasound which revealed mine was completely full and partially collapsed. I needed surgery asap. I should mention that my former doctor was not BELIEVING in my illness, she was believing I was a hypochondriac and brushing me off is what she was doing...and I was paying the price. Others who believed if I would just "change my way of thinking" as if I could think myself out of fevers and swollen lymph nodes, low platelets, Other countries recognize ME/CFS as potentially fatal. It baffles me why such a serious illness that affects so many would be dismissed so Did you see any major sports organization wearing Purple ribbons for us May 12th? Did you see any major celebrities speaking out about it on TV? I didn't even though I know of some who are said to have it. They likely don't want to admit it publically because of the stigma attached. We not only have to battle the illness' but we also have to constantly defend out character if we are diagnosed with these.
I've wrote that I have these. I wouldn't be able to do these rides were it not for my recumbent trikes, again I will say they are a Godsend. I've also said that I'm not going to hide the bad days. I'm going to commit to vlogging more with the next ride so that you can see for yourself, and tell you more exactly how I'm feeling physically and honestly. Sometimes when I pay close attention to not over exerting myself, take breaks properly etc the riding on the recumbents HELP. Getting too much sun does NOT help. I've been very fortunate to have such a considerate riding partner who I fully give all credit to for pulling way more than his share of the work when it comes to pulling the trailer most of the time, then unloading and setting up camp while all I do is organize and prepare dinner. I've wanted to try a solo long distance ride but I know all to well that my riding partner does so much of the work, I don't know that I can do it alone. I spend so much time preparing physically that that is why I often forget other important points to check-like major events happening or the wild life that live in the area. (Florida) Life is just constantly more complicated, painful and humiliating, all of which could be lessened if only people were better educated/informed about the diseases-especially doctors.
So, for this reason, I believe I want to devote my next ride to raising funds for FMS/ME/CFS research and advocacy. I've lived with these longer than most so please feel free to ask me questions if you would like to know about it. I'm also asking you to pledge. It takes funds to make these rides. We travel pretty cheap but we do still have to eat, and pay for campsites and occasional motel rooms as well as occasional typical bike repairs such as flat tires. (Hoping for a sponsor who will cover some of those) We will keep the costs low and all profits will go to research and advocacy for FMS and ME/CFS.
I'd love to meet others with the illness' and possibly tell some of your story if you wouldn't mind. If any of you are at a place where you can and would like to ride along with me even for just a short distance, I'd love that! If you are bedridden with this and along my route and willing to be interviewed on my vlog PLEASE let me know! I'd like people to see all extremes of this beast. That it's not just "muscle aches". If you are another patient suffering with this and have felt helpless to do anything here is your chance! You can help me get people reading and viewing -supporters who will become educated and or pledge. And you can help by telling your story. I will cover as much ground as I can and check on here for your invites along my route once I have it posted, I will be your legs so you will no longer be invisible without a voice! My hope is to make this ride this summer.
Check in for further updates....
For whatever reason some medical professionals, more so than not (although that tide is slowly turning) are in denial about the severity of these diseases, some even refuse to give them any validation at all. I've known of doctors with this attitude who became sick with it themselves and their peers, knowing how disbelieving they were, still labeled them as psychosomatic. Is that ridiculous or what!?
Trust me and the millions of others, it's real, very real,l very upsetting. Here is just a small example of what happens. I was visiting family in Ohio when I began having horrible abdominal pain. Nothing helped. I suffered the ride back to Indiana and went to our doctor who immediately dismissed it as just another symptom of my CFS. Now one of the skills I have developed pretty well, admittedly not perfect but pretty darn well over course of living with this most of my life is recognizing when it's fibro muscle pain or not and I knew this just did not feel right. It felt more internal if that made sense? So I saw a different doctor who immediately said "Well that sounds like gall bladder. Has anyone checked your gall bladder?" I told him no and he sent me right over for an ultrasound which revealed mine was completely full and partially collapsed. I needed surgery asap. I should mention that my former doctor was not BELIEVING in my illness, she was believing I was a hypochondriac and brushing me off is what she was doing...and I was paying the price. Others who believed if I would just "change my way of thinking" as if I could think myself out of fevers and swollen lymph nodes, low platelets, Other countries recognize ME/CFS as potentially fatal. It baffles me why such a serious illness that affects so many would be dismissed so Did you see any major sports organization wearing Purple ribbons for us May 12th? Did you see any major celebrities speaking out about it on TV? I didn't even though I know of some who are said to have it. They likely don't want to admit it publically because of the stigma attached. We not only have to battle the illness' but we also have to constantly defend out character if we are diagnosed with these.
I've wrote that I have these. I wouldn't be able to do these rides were it not for my recumbent trikes, again I will say they are a Godsend. I've also said that I'm not going to hide the bad days. I'm going to commit to vlogging more with the next ride so that you can see for yourself, and tell you more exactly how I'm feeling physically and honestly. Sometimes when I pay close attention to not over exerting myself, take breaks properly etc the riding on the recumbents HELP. Getting too much sun does NOT help. I've been very fortunate to have such a considerate riding partner who I fully give all credit to for pulling way more than his share of the work when it comes to pulling the trailer most of the time, then unloading and setting up camp while all I do is organize and prepare dinner. I've wanted to try a solo long distance ride but I know all to well that my riding partner does so much of the work, I don't know that I can do it alone. I spend so much time preparing physically that that is why I often forget other important points to check-like major events happening or the wild life that live in the area. (Florida) Life is just constantly more complicated, painful and humiliating, all of which could be lessened if only people were better educated/informed about the diseases-especially doctors.
So, for this reason, I believe I want to devote my next ride to raising funds for FMS/ME/CFS research and advocacy. I've lived with these longer than most so please feel free to ask me questions if you would like to know about it. I'm also asking you to pledge. It takes funds to make these rides. We travel pretty cheap but we do still have to eat, and pay for campsites and occasional motel rooms as well as occasional typical bike repairs such as flat tires. (Hoping for a sponsor who will cover some of those) We will keep the costs low and all profits will go to research and advocacy for FMS and ME/CFS.
I'd love to meet others with the illness' and possibly tell some of your story if you wouldn't mind. If any of you are at a place where you can and would like to ride along with me even for just a short distance, I'd love that! If you are bedridden with this and along my route and willing to be interviewed on my vlog PLEASE let me know! I'd like people to see all extremes of this beast. That it's not just "muscle aches". If you are another patient suffering with this and have felt helpless to do anything here is your chance! You can help me get people reading and viewing -supporters who will become educated and or pledge. And you can help by telling your story. I will cover as much ground as I can and check on here for your invites along my route once I have it posted, I will be your legs so you will no longer be invisible without a voice! My hope is to make this ride this summer.
Check in for further updates....
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