So here I am today in my thoughts thinking about why me?
I know I have had three main diseases, Sarcoidosis, Sjogren’s Syndrome and Parkinson’s. I know I have been through so much in my life from childhood leukemia to being in two different foster homes as well as having my daughter Savannah to losing my daughter Isabella to marrying my both my love and my best friend, Diana.
I have been through so much this year that I never saw coming going into the year. I started the year very optimistic. But as life goes you face ups and downs. Well this year has gone downhill since April.
April was a crazy month. I was told by my doctors that I have been downgraded from chronically ill to terminally ill. When I was told it took a bit for me to deal with it but my first reaction still rings true. I told the doctors “Thanks but that is just a word to me!” I knew I had to cut back in all of my activities and my endeavors.
Due to that I upset many people, but I also know a lot of people who upset me. I thought I had some friends, but ultimately realized that I was being used. I haven’t said anything about this, but it really hurt when the people who I thought were close to me didn’t care when I said I was diagnosed terminal, their first comments were “What does that mean to the project?” Not are you okay! So I realized where I stood. I do know I personally didn’t handle it well either. But how do you handle being told you are terminal ? There is no blueprint for that. I should of let them run the project. But after the exchange I didn’t feel they had my goals at hand. What I did realize is that I needed to stop feeling that I was being used. I worked so hard for the rare disease community. The feeling of being cast aside from all of what I had did for 7 years putting my own health at risk to help the rare disease community made me at first angry then sad. When asked by different organizations to join as an alliance member, or talk at a conference, or director of a working group, or a liaison for another I helped out. Then to be ostracized by the community without a care makes me angry and sad all at once even now!
I have stayed on as a National Sarcoidosis Ambassador as well as RUGD Ambassador for Illumina, plus I have taken some small roles that I can do for other organizations at home, Savvy_Coop, Breakthrough Crew, and WEGO Health.
I won’t lie I know I am not always easy to get along with! When it comes to advocating I have an unusual way of doing things, always have and probably always will. I can say for the most part it has worked for me to raise awareness. My US Representative and Senators know me by name. They have helped me and done things for me that most haven’t done for others. My approach has always been, be straightforward with them and I expect the same from them. I will help them as long as they are straight with me. I have always tried to put the patients first. Not just myself but the whole community.
I still have a huge problem with how adults with rare diseases are treated in the community itself as well by . I will never stop expressing this fact. Please don’t forget that there are 30 million people who have rare diseases, of those 30 million 50% or 15 million are children, but the forgotten ones the other 50% or 15 million are adults who don’t want to die, who have a family that they are suppose to take care of, who have lost their jobs because of these diseases.
I have many things I should be proud of. I know that. I have been nominated for advocacy awards as well winning Advocate of the Year by my Town. But one that is not why I have done this and two it is about the patients not me. Plus the Sarcoidosis community, has never wavered or questioned my intentions. I am so happy that the true community in which I started with has stood behind me and I know they have my back as much as I have theirs.
I am far from capable to do the things I was able to do just months ago and because being terminal I know I will be able to do less as time goes on. Those are just the facts. Does it stop me from being an advocate.. NO! Does it limit me… yes.. but you can still be an advocate from home. I can’t travel as much as I once did. As a matter of fact I can’t do a quarter of what I did before, but I know a quarter of me giving is still better than none of me. I am forever grateful for FSR and others for accepting me for who I am and not who I was. I will never be who I was! But I can be the best who I am now.
As to the “Why Me?”
I am not one to feel sorry for myself! Not in my Genes! I do have times when I think why did this happen to me? Why is The Sarcoidosis and the Parkinson’s having what my doctor told me as a “turf war in my brain, and I am the loser either way!” Why is my memory so bad now? Why are the migraines been going on for six months now with no stopping in sight?
Many people say I have a right to ask “Why Me?” Don’t get me wrong I do at times. I am one that deals with facts. I have three diseases that are killing me. That is something I can’t change. It is “The New Me!” Do I wish I could feel better of course, but there is nothing that is going to change that for now. I have to live in the now!
Right now I have to be the best person I can be, be the best family man, husband and father I can be, then lastly be the best advocate I can be now. Yes in that order!
If I don’t take care of myself first then the rest doesn’t matter. Some people call it selfishness. I call it self awareness! It is something that I am not very good at or as I have been told before “I stink at!” I am trying to figure it out more now than ever.
I have learned that just because I have put myself first it doesn’t make me selfish. It makes me selfless. Why you may ask? Because I am not helping anyone if I don’t help myself.
I have been writing this blog not only for you and to show you what I have done, but most importantly for me to remember what I am here on this planet for. For a long, long time I have felt like I didn’t matter, like I am just here! Well I am here for a reason and the reason is to help others and by helping myself I can do that. I have changed my focus on life because life has told me to, but that doesn’t mean I care less or am not involved in advocating. It means I am doing the best I can, when I can, for as long as I can!!
I sincerely want to thank those who have been by my side with this and I don’t know where I would be without them!
Diana, my wife, my love, my best friend. I don’t know where I would be without you. You have been my rock, my life, my soul! I live for you! No matter what we have been able to handle things together! What a team we make! I love you more than any words can say!! Your sacrifice to be with me is incredible. Your devotion for the things I do as an advocate is unmeasured. You are the best wife and person anyone could ever have!
Savannah, my daughter, my everything! You have been so amazing! You have inspired me to be a better father! You are the best! I live for you! You are and will become the best woman, more than I could ever imagined!
Debby, my counselor, but more important my friend! I have been able to go to you with anything no matter what, without fear of being belittled or feeling unimportant! I love you! What you have done for my family I could never repay you.
Isabella, my daughter, even though you were on this earth for 5 days you are always in my heart. You have taught me things I never would of known about myself. Thank you so much for being in my life forever!
Mom, you taught me so much! You are the strength in which I lean on. Even though you have been gone for 17 years you are only a question away. I feel you in everything I do. You have given me the strength to fight for who I am, what I am and for where I am right now. I always hope I am making you proud now and always! You have shown me what it is like to be a fighter! I love you now and forever!!
My Brothers and Sisters, you guys have helped me to be who I am today. Though I may have strayed away from you at times you are always in my heart! I love you all!
My Family, I want to thank you all for all of your patience even though I didn’t deserve it at times. I love you all!
My Mother in Law and family, you took me in and have taken care of me throughout my sickness. You have been there for my events and supported me throughout! I will always be grateful and love you all!
Kelli, my FSR helper but more importantly my friend. You have always been there for me when I needed to talk and just to bounce ideas off of. You are so amazing! I love you!
Cathleen, you may be my Vice President, but you are truly so much more. You are my friend, my confidant, my right hand person! Thank you so much for all of your help and support! I love you!
Kerry, you are amazing in everything you do! You are a very special to me and my family. I am so glad and honored to say you are my friend and co-Ambassador. I love you and Mike and your Mom, Iris!!
FSR Ambassadors, there are too many of you to mention. You are all so amazing! You are such an inspiration to so many and to me! Without all of you I know I wouldn’t be where I am now. My original FSR Ambassadors we made history! You are all family to me! Much Love To All of You!
Ginger, I remember when we both just started fighting the crazy battle against Sarcoidosis. I remember our first conversation. We just talked and you actually asked my opinion on how we can make the organization better. I love that we are always able to talk and that you have had my back! Love you!
Alesia, I love you! Your attitude towards life is nothing short of amazing! You are an inspiration! So glad to say you are my friend!
To Everyone else who has been there for me, Thank you so Much!
4 thoughts on “My Advocate Story Now and Why Me?”
I very rarely have feelings, but you made me tear up, which I rarely do. I know what you feel about people not caring. My husband was battling stage 4 cancer this past year. He was in rehab for a month not one person asked me how I was doing or if I needed help especially with the animals. They all knew that I have sarcoidosis, diabetes, arthritis, spinal stenosis and I had spinal fusion surgery last year. The sarcoidosis is now in my spleen. Not even a phone call did I get. Needless to say everyone is on my shit list. So I guess in the end I am alone. Since my husband would not stop smoking he is having another biopsy next week. Honestly don’t know if I can go through this again. Thank you
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So sorry. I hope you will have some good news.
You are a great friend Sarcoidosis brother and warrior I have learned alot from you and you are a very inspiring person and you are greatly appreciated and I’m so glad and thankful for the person you are and you are a very beautiful person inside and out and thank you so much for all that you have done to bring awareness to our disease much love to you and your wife and daughter 💜💜💜🤟🤟🤟🙏🙏🙏🙏
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Frank, I have followed your journey because one of my best friend’s has suspected sarcoidosis (having trouble getting dx in Cleveland) and I told her you were the one to watch and asked her to reach out to you. I am so upset to read about your status as terminal; I am a mom of a son with an ultra rare disease and terminal diagnosis. All three of my boys have a different rare disease (we have remarable genetics! Ha!).
I also know what you mean when you say you feel used by the rare community- been there and man does it hurt. Hurts worse when people spread lies about you. I live in a very divided rare community. So many turned their backs on us when I couldn’t do the work they expected me to do. I have done my best to let go and just do what I can and continue to advocate for my son’s care.
Please take care and know many of us are rooting for you. Ps I like your rough and tumble ways in rare! And yes the adults in rare are marginalized! Only cute babies and kids are getting the attention. I wish it werent so…