My Advocate Story Now and Why Me?

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!

 

 

 

 

 

 

My Government Views

My Views of the State of our Country and Government. They are my opinion and mine alone!!

I know I am just a Patient Advocate but I have a unique perspective of the government, due to my 7 years of government advocating and dealing with all sides of the government. Since I have been downgraded from Chronically ill to Terminally ill, I have been home a lot more, but I have been dealing in full government advocacy. Yes you can still be an advocate from home. I have many connections from my time in Washington DC. They know I am a straight shooter and don’t hold anything back, but they also know that I am loyal to those who are loyal to me and I always have the PEOPLE in my best interests!

I just have to say a couple of things about our Government! I am totally disgusted by all parties of our government!

I am disgusted by our House of Representatives, while we are watching this Kavanaugh debacle, they are voting on TAX SCAM #2.”The Joint Committee on Taxation estimated that making these measures permanent would cost the government $630 billion in federal revenue over the next decade and also make all these changes permanent.” Give the rich more money take more from Medicare, Medicaid and Social Security Disability. LOOK AT THIS- “At the end of FY 2018 the gross US federal government debt is estimated to be $21.48 trillion, according to the FY19 Federal Budget” That does not count this new bill they are trying to pass! That is crazy incredible!

I am also disgusted at my own personal US Representative Lee Zeldin for lying to my face. I worked with Zeldin on many rare disease issues, and all the while stabbing me and millions of people in the back by voting YES on the Tax Scam Bill and also voting YES on the most recent Health care bill to come through the house. That bill makes it almost impossible for those with pre-existing conditions to get health insurance. That is the most ridiculous thing I can ever think of!

I am disgusted at the Senate for so many things! First and Foremost- GET A SPINE! ALL OF YOU! Many Americans would love you for it! This Kavanaugh debacle is the biggest disgrace in the government in all of my memory! It brought to head how DESTROYED our government is! Both sides are to blame and taking people down in the meantime and they don’t care! Dr. Ford went there yesterday to tell them about most likely the worse part of her life, being assaulted. What was the response from some of the Senators? We have Hatch saying she is beautiful and at one point of the hearing it actually looked like he was sleeping. Then you have Senator Graham yelling and demeaning her testimony and saying he will get revenge on the Democrats. Great! 99% of the committee had their minds set on the vote for Kavanaugh. Why bring her there? It was a disgusting horse and pony show!

If any of them cared they would of brought all of the people that were claimed to be there to the hearing. Yes they got a signed document saying they have no recollection. Anyone can sign a paper. Knowing that even though it is under law that nobody will call them for it.

Now with the Democrats . They should not be playing games either. They say they care about people but getting caught up in the same games that both sides are playing make you just as bad. You can’t be any better if you are doing the same thing as the other side.

Okay you all know how I feel about Trump. He ranks right up there as the worse people I have ever known. He has taken advantage of so many people, whether it physically, monetarily or mentally. He has made a mockery of the biggest job in the world, the US PRESIDENCY.
I have never seen the country and the world so divided in my 51 years alive. I am sure the Trump sheep will say ” No it was Obama!” No remember that Trump was the biggest “birther movement” talker to divide the country. Also we have our Great Senate Majority Leader and I quote ” We will make Obama a one term President.” So his cronies decided to make it miserable for him.

When it comes to Obama I believe he was trying to make too many people happy too many times. He was stymied but he let them do that to him also. When he came into office I know he had so many eyes on him being the first African American Descendant President. But he promised many things that he should of pushed back.
I am so tired of the government! I have been working with the government both Republicans and Democrats for 7 years and I never said I give up on them. I just know that it is broken so bad and yesterday just showed how broken it is.

I have one more thing to say. I am registered and independent. I have voted on both sides of the party. I vote for whoever I feel is looking out for ALL the people! Not just industry, or big money.

THE MAIN THING IS THAT PEOPLE ARE DYING, PEOPLE ARE GETTING KILLED, PEOPLE ARE GETTING SEXUALLY ABUSED, AND NOBODY IS FACING THOSE ISSUES!!!

WAKE UP EVERYONE!! VOTE! FIND PEOPLE WHO ACTUALLY CARE! STOP COMPLAINING AND DO SOMETHING ABOUT IT! YOU CAN MAKE A CALL, BE HEARD! ENOUGH OF THIS CRAP!!

Why??

Today I have been thinking about the word WHY???

• Why don’t I have close friends?
• Why do I have a rare disease and two other diseases?
• Why do I keep seeing on Television about children having a rare disease but nothing about Adults still? Not trying to say anything against children but adults have rare diseases too.]
• Why can’t anyone figure something to just help me feel a little better?
• Why am I terminally ill? What happened? 

I will try to keep things in order, but sometimes that is not that easy for me.

I know I shouldn’t be complaining, but I will at times and today may just be one of those days! Many people have it worse than I do, I realize that. My life has been rough , but as hard as it has been I have been blessed. My Mother even though she was sick most if not all of my life, was AMAZING! I know she may had done things that weren’t “according to everyone’s right way” but she did the best she could and loved us unconditionally. I know for me there were no limits in subjects that I could talk with her about. I also have a family Diana my wife and Savannah that have been by my side for a long time and many patients don’t have that. Also I feel like my extended family is trying to understand, it is very hard to understand when you don’t see or deal with it regularly.

Why don’t I have close friends?

Now when it comes to friends that is a totally different story. I lost a lot of friends, but a lot of that was my own doing, I own up to that, but other friends I lost have been due to being sick. Most of the friends I have now are because of my sicknesses. My wife of course is my best friend! But if asked if I have another best friend I can honestly say right now I don’t think I could name a person. I am not saying it to be ” Oh Poor Poor Me!” I am just stating facts. I have some people I can trust and can talk to, but there isn’t that one person I could call and say ” Hey you want to go out for coffee?” Like I said some of it is my fault, but when you need that one person the most it stinks and hurts. I would love to go to the beach just for a little while but since I don’t drive that makes it tough. It is the little things in life! But it is very hard when you are terminally ill and can’t go out to make friends. Enough of the Pity Party! I love the friends I do have don’t ever get me wrong! This is a very common occurrence for chronically ill patients to lose friends, but nevertheless it is tough! I am not perfect! Never was and Never will be! I have done stuff I regret and probably will do again, I am human!

Why do I have a rare disease and two other diseases?

Now this question of course is rhetoric. I will never know why I have Sarcoidosis, I can speculate, but I will probably never know. Same as Sjogren’s Syndrome and Parkinson’s. So why ask this question? It could be why me? But not really! It could be God doesn’t give you more than you can’t handle, I am human I wonder about that. Was it something I did in my past? I never believe that for anyone or so many Great people wouldn’t of died so early.

So the reason I ask this is really what have I learned since having these diseases? There are many things. Some good some not so good.

I have learned who are the real people in my life! I have learned how strong I truly am! I learned I may not win this fight , but I sure am not going to lose either! When all is said and done people can say whatever they want good or bad, but I did things the best I could. Sure I would change many things but they made me who I am right now! Someone so passionate about not only about myself but most importantly others.

I have these diseases because it made me a better person! Sounds weird, doesn’t it? I am sure there are some who may not think that but I can’t please everyone, nor will I try! I wish many things are different, but I am here fighting for my life and many others the best I can. It is different than before, but now since I am even more of a homebody than before, I can only do so much but I still try. I won’t stop fighting for what I feel is right, no matter who it upsets if I feel it is the right thing to do for the patient. I can’t change that! Never mind can’t, I won’t!!! These diseases have made me a better person in other ways also. I don’t sweat the small stuff anymore! Why spend the rest of your life worrying about small things? Stressing yourself over why you can’t go here because you can’t afford it or someone does something small that bothers you is such a waste of time!

So I guess the reason I have these diseases is that it gave me a better concept of who I am!

Why do I keep seeing on Television about children having a rare disease but nothing about Adults still? Not trying to say anything against children but adults have rare diseases too.]

I know this is a very touchy subject. Let me start this off like I have before. There are at least 30 million Americans who have rare diseases. 50% of them are children. It is a sad truth that too many children have rare diseases, but don’t forget that 50% of rare disease patients are adults also. So stay with me on this one for awhile!

I have never tried to separate children and adults, but how many times do you hear about Adults with rare diseases compared to the children. I know it hits the heartstrings when people hear or see a child with a rare disease.

Do you realize how it feels to be an adult with a rare disease? What an impact it also has on family life financially, emotionally and mentally? I can only speak from my experiences. This part is not to sound like a victim, these are real experiences that I have been through.

I have been sick for a lot of my life, it started with simple things as extended ear problems, then it went to something more serious like childhood leukemia. When I had that I missed half of Kindergarten all the way to 4th grade of school. I could of and many times was told that they thought I wouldn’t make it through that. Boy were they wrong!! HAHA!! Why I put this in is because I know what it feels like to be a child with a severe illness. It was terrible! Blood transfusions, Chemotherapy, being in the hospital, or in a bed at home for almost 24 hours a day was like. The worse is that as a child you don’t understand what and why this is going on! I remember my Mom being sick herself trying to take care of me and all of the hardness and strength it took out of her and all of my Mom’s friends who were there to take care of me too.

As an adult who is sick guess what? You still don’t understand what and why this is going on, but on a totally different level. You know that you are sick but when you have a rare disease the odds are you don’t know how or why you got the disease. Then you also don’t have the understanding of what this disease is going to do to your body, especially when it comes to Sarcoidosis. Every patient has different symptoms. Then add on Sjogren’s Syndrome and Parkinson’s, IBS, Diverticulosis, Uevitis, Rheumatoid Arthritisand etc… it all becomes a complete mess!!!

When I was first misdiagnosed in 2004, I had a good job, good pay, steady employment wasn’t always worried about money. I had my daughter to take care of but that was fine. When I was misdiagnosed with cancer my whole life changed financially, physically emotionally and of course mentally. I was having a terrible time trying to maintain my job while receiving Chemotherapy and Radiation.

My health was a joke.. Not being able to hold down food, strength was next to nothing for days, then there was the little thing called loss of weight, I went down to 98 lbs. I honestly thought my life was over! Once again they and I were wrong! It was what I thought was the worse thing that would ever happen to me, boy was I wrong ( that happens to me a lot).

When I was finally diagnosed with Sarcoidosis I wasn’t too worried, after all Diana, my wife’s brother had it and he was fine after taking some prednisone, I can handle it. Well I was in for a rude awakening. I was diagnosed in April 2011. The best and when I say best I mean worst part of this was going to Mt. Sinai to find out that I received Chemotherapy and Radiation from 2004 to early 2008 for not the right reason. I was misdiagnosed with lung cancer the whole time so my travels with Sarcoidosis was going to be totally different than most people and just another jab to add in there was because I was misdiagnosed and my body was so weak I also found out I had Sarcoidosis in over 70% of my body by then. Now it is everywhere except my kidneys and liver. I can honestly say having Sarcoidosis is so much worse now than when I was misdiagnosed and on Chemotherapy and Radiation. That sounds crazy doesn’t it? How can that be? Very easy! When I was on Chemotherapy and Radiation it was helping a little by shrinking some of my masses.

Now we come to what is going on now! You see I guess I have been a medical anomaly for my whole life. I found out last April 2017, that I have Parkinson’s. Oh great! Just one more thing to for me worry about . Well comes to find out once again in 2011 I was diagnosed with Essential tremors. Wrong! It was Parkinson’s! Surprise! So I started using the Carbidopa-Levodopa and I thought “Hey this stuff is great!” It has helped so much with my shaking! I am on my way to do so much! Then slammed down again, I start to pass out… This is new… What is this all about??? Starting August 2017, I start to pass out for no reason at all. In total I have either passed out or fell for no reason at least 7 times in almost a year. Then more and more symptoms came about! I started having memory loss. At first I think “Okay I am 51 so you are going to forget things.” So I thought. I starting forgetting words, dates, times, full conversations and just some fundamental things. So my doctor is like okay let’s check your brain functions. It is called an EVOKE test. Well it came back as one of the worse on a whole if not the worse he has ever seen. I am like what does that mean?

When I received my results from this test and other neurological tests we found out that my long term memory is at 24% and my short term memory is at 17%. What a shock!! I knew my memory was bad but I didn’t realize how bad it is.

I was also told my cardiovascular and my motor function has declined terribly.

Then the BOMB came in! I was told by my doctor you have been downgraded from chronically ill to the dreaded words TERMINALLY ILL!

Since I have multiple illnesses that are attacking my brain, mainly the Sarcoidosis and the Parkinson’s, it is extremely difficult to decide which disease is causing what anymore. I had tried every Sarcoidosis medicine that is known to help, but not one has worked for me unfortunately.

There is a reason I went into detail about my health! I want you to understand what me as an adult has been going through. You hear on TV that this child has to go through this or that or that this person with Cancer has to go through this. But you hardly ever hear about an adult rare patient and what they have to go through daily.

I can barely walk, I can’t lift anything over 10 pounds, Most of my days are spent in bed, mostly sleeping. Something as easy as showering is a chore. So is getting dressed, wash up, and any other daily activity. Never mind me emotionally or mentally.

That is what I have to deal with can you imagine what my wife Diana, and my daughter Savannah have to deal with.

• First off as a family we lost monetarily because instead of me being able to work I have to collect Social Security which is a joke. So we had to make some major financial cuts.
• Then there is the physical aspect that my wife and daughter have to pick up in slack but also imagine being a wife or daughter and seeing you deteriorate in front of their eyes. My daughter was use to seeing this strong Dad picking her up as a child to run and play to someone who can’t go out hardly anywhere with her. Can you imagine not only the physical aspect but the mental and emotional scars it puts on my daughter. She has to wonder if I am going to be able to dance with her at her sweet sixteen this year, nevermind graduation or marriage. Can you also imagine that a 15 year old contacts me during school just to make sure I am okay? When she wakes up or comes home she makes sure I have eaten, or do I need anything. That is not how a 15 year old is suppose to live! The emotional and the mental aspect for a 15 year old to know her Father is terminally ill. Nobody talks about that do they???
• Can you imagine what it is like for my wife who married me knowing I was sick, but I am sure she didn’t expect all of this. She has to be the bread winner, the stable and strong one no matter how she is feeling for my daughter but also for me. It is hard for her to ask everyday and 99% of the time I am saying I am not feeling well. She has to also be the one who drives around because I can’t. So when she gets home she doesn’t hardly ever get a chance to relax. Then if I can’t get out of bed she has to do take care of me. She has to do so much not just for me but also for my daughter. She has to take her around, buy her things because I don’t make enough money to do it for her and I can’t physically go out to do me, it kills me inside that I can’t be the “Dad” she deserves. To see what my wife has to go through physically and emotionally and also mentally is so tough. She tries to be the strong one but I know that she is hurting so much inside.
• We have changed our whole lifestyle, due to this. We have changed when and how we go out. We have to try to take time for us, but when I go out it takes days for me to recover. So both my Wife and my daughter try to protect me and I try to be strong for them. So it is very tough to find a middle ground for all of us because there is no blue print for this.
• Does anybody realize how hard it was for me as an adult who was a very physical and athletic person to go from a long distance runner to be someone who sleeps most of the day away? Can you imagine how hard it is for me emotionally as well as mentally for me to hear the words “You are terminally ill!” I still don’t know how to handle it.
• This is why I believe there needs to be more of a discussion about adults who have rare diseases or any adult that has a chronic illness.

Why am I terminally ill? What happened? 

Ok once again this is a rhetoric question! But one I ask myself so many days if not everyday!  I know that I have reasons for being sick and that is to help people, but why terminally?

The best I can say is that there were flaws in my diagnosis and we all know that.  Also I truly believe I should of pushed more to find answers. Having not one but two misdiagnosis is crazy!

I feel I let myself down, but I also feel the medical field and the government failed me! I don’t want too push blame , but I do want to point out the obvious. I tried to get into five clinical trials, but not one accepted me. I also tried for compassionate use but the FDA wasn’t so compassionate to me!

I let myself down by not being more informed in the beginning and not being pushy enough to find answers!

In conclusion I highly recommend that you have to be your own best advocate! I wrote this blog because many people don’t understand my experiences with being a Rare, Chronic and now terminally ill. I truly hope I can help at least one person to understand how hard it is and also to let them know you will probably never have all of the answers. Don’t stress yourself trying to find the answers of WHY!! Just understand that things are what they are and try to make the best you can of whatever your situation is!

When I first starting writing this three days ago I was thinking this was going to be a complaining blog. As I kept going I now feel it is something we all go through. It is how you handle it that will decide your future!

I also know I don’t have all of the answers! I just write to honestly make people think and more importantly make me think!!!

Another Bump in the Road! Looking for Suggestions??

As a rare disease patient Sarcoidosis, and Sjogren’s  with a not so rare disease called Parkinson’s, I deal with new symptoms everyday. My days are always filled with excitement.

Well on Monday I had a major setback in my road to “recovery.” I woke up in a very good mood on Monday then after finishing breakfast I tripped over my dog, which shouldn’t be no big thing. 

Here is the thing with that. I have terrible balance to begin with, so I tried to stop myself from falling which probably made it worse and somewhat better. I was somewhat lucky that fell through a doorway. Only my right elbow and my left ankle hit the walls. Then I twisted my right knee and my left hip hit the ground.

Ever been in a fall where you feel like everything is going in slow motion? Well that is exactly how I felt when I was falling.  I am realizing now what being terminally really means. 

What is means to me?

To me it means every thing I do, any step I take, Every bad feeling I have has consequences! I am trying to understand this in my mind. Of course this is a new frontier and not many people can help me with this. 

One thing I found out though is I seem to do most of my writing when my mind is in a fog. Is that weird? I don’t know why this is but I do this most of the time. So in advance I am so sorry if any of this doesn’t make sense. 

I have been realizing how life is fragile! Things that you take advantage of in life are so much more difficult to do now.  Walking down stairs, getting dressed, taking showers ( I use a shower seat), walking with a cane (told by my doctor I need a better one, a 4 point cane) even getting out of bed is always fun! No I am not complaining! I am just describing my daily life. It is different and something I am trying to adjust to. 

But the worse part of adjusting to my declining health is the brain problems. The lost of memory, the lost of vision, the brain-fogs that come and go. I have the most problem with that. I have not taken pain pills because I wanted my mind clear. No I can’t even control what I am doing and thinking at times. 

I have always been one to pride myself to be in control of my mind, so I have to say when I get this way I kind of freak out. Which I am sure it makes things work. But I can’t figure out how to stop this feeling. 

My meditation has helped but these fog days can last all day. So I just hold on and hope to make it through this day. 

I know that being terminal isn’t good, but I don’t want it to run all of my life!

What are some of the things that you do??? I am always up for suggestions, legal or harmless of course. 

Not all of these blogs are just for information, they are some just for help to me or anyone else going through this!

Please help!!! 

I have two mottos:

1. I have Sarcoidosis, but it doesn’t have me!

2. Terminal is just a word, not a death sentence!

I Feel Useless!!

I write these blogs to give you an insight into just one person who is a terminally ill patient. All of what I write is about me and not trying to speak for anyone else!

I am having many days in which I feel absolutely Useless!!! My body feels like it wants to give up on me but my brain is saying no not going to happen… I am wondering will I ever have a day in which I can do anything anymore. Yes I do things, but I am doing these things in spite of my body! If it was up to my body I feel it would say done… I don’t want to say I am giving up but what your mind and what your body says are two totally different things.

I am always tired, hurting and emotionally drained. More than usual now. I know I was downgraded from chronically ill to terminally ill, but I am not the type to give up and refuse to. I don’t want to be laying in bed everyday and doing absolutely nothing. I can’t! If I do I might as well just give up! Well I have given up before and don’t ever want to go back there.

I have been thinking about so many different things because what else do I have to do. I try to read I just give up. I listen to audio books and lose interest in minutes. I know I am just going on but I want people to understand what it is like to be me now!

I am having so many internal battles that I don’t know who or what I am anymore. My head is like you are better than you think but my body tells me you are terminal. How do I decipher what is what?

With all this being said I regret coming out that I am terminally ill. Honestly I wasn’t going to tell anyone, but didn’t know the NBC Nightly News put it up on TV for my whole interview. So there it was!! I feel that too many people are walking on eggshells with me. When I say I can or want to help it is because I want to help! If I don’t do what I do best I might as well GIVE UP!

I know people mean well and are trying to make sure I don’t do too much. But I don’t want pity. I know as a friend where do you draw the line? For me I know my body better than anyone else. If I can’t do things I will let you know. I really need a purpose in life other than just staying alive!  I have a great family and support system who I want to spend a lot of time with and they deserve that. But most of the time I am home by myself just doing absolutely nothing because I am stuck in bed and in too much pain to get out of bed.

But I don’t want to be useless! I don’t want to think there is nothing left for me to do!

Instead of being suicidal, lately I am just very aggravated! I am not adjusting well to my new normal. Why? Because my new normal is not a good normal!! It is a normal in which I am told that you are dying. It is a normal in which my body just says lay here. I know I need the rest but is it really rest when your mind won’t stop and you feel like why am I even here?

I am not an ego person but I feel like I am not needed anymore. In all aspects of my life! It is not anyone’s fault but it is me just going from being busy to doing absolutely (well hardly) anything. When I was diagnosed with Sarcoidosis I knew it was going to be rough but I had a purpose. Right now I really don’t know what my purpose is??

I know my family needs me and wants me as I do with my friends but it is really tough to go around life when you feel you have no purpose.

Yes this is a form of depression. I know that! But this is different from any other type of depression that I have ever dealt with. It is hard to talk to anyone including my counselor. I can talk but when I get asked how can I help? I don’t know how to answer this! How can you ask for help when you don’t know how anyone can help?? It really is a tough situation to be in. I really don’t know who I am!!

I figured I needed to write this more for myself than probably anyone else. I am in a place I never thought I would be!

ONCE AGAIN I AM NOT SUICIDAL.

I AM LOST!

I DON’T KNOW WHO I AM OR WHAT I AM??

I AM JUST HERE!!!

TO ME THAT IS THE WORSE FEELING I HAVE EVER DEALT WITH!!

Depression

This is going to be a long post! Because this hits home to me and many others!

If you or someone you know is contemplating suicide, call 1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255).

What happened with Kate Spade can happen to anyone. Depression in America affects over 19 million people. It can happen to anyone. Please don’t ever take it for granted that someone is going to be fine. Learn the signs, learn what it can do, learn what can cause it because there can be an underlying cause. Take it seriously in others and in yourself.
One thing about depression and suicide is that you may not see that someone else may have it or be thinking about it. It has become an epidemic:

According to the American Foundation for Suicide Prevention (AFSP), over 44,000 people try to commit suicide each year in the United States. In 2015, suicide was the second leading cause of death in people 15 to 34 years of age and third leading cause of death in children aged 10 to 14, according to the CDC.

Men are four times more likely than women to kill themselves, and 77 percent of U.S. suicides are completed by men, the CDC said. This disparity is partially due to men choosing more lethal means to kill themselves: 56 percent die by firearm. Women are more likely to attempt suicide by self-poisoning.

“Women more likely to attempt suicide, and men more likely to complete [it],” Campo said.

Why Do People Attempt Suicide?
A suicide attempt is a clear indication that something is gravely wrong in a person’s life. No matter the race or age of the person; how rich or poor they are, it is true that most people who die by suicide have a mental or emotional disorder. The most common underlying disorder is depression, 30% to 70% of suicide victims suffer from major depression or bipolar (manic-depressive) disorder. [1]

Warning Signs of Someone Considering Suicide
Any one of these signs does not necessarily mean the person is considering suicide, but several of these symptoms may signal a need for help:

Verbal suicide threats such as, “You’d be better off without me.” or “Maybe I won’t be around”
Expressions of hopelessness and helplessness
Previous suicide attempts
Daring or risk-taking behavior
Personality changes
Depression
Giving away prized possessions
Lack of interest in future plans
Remember: Eight out of ten people considering suicide give some sign of their intentions. [2] People who talk about suicide, threaten suicide, or call suicide crisis centers are 30 times more likely than average to kill themselves. [3]

If you or someone you know is contemplating suicide, call 1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255).

I have been dealing with Depression for many of years most of mine has to do with my health but other times it is due to anxiety and stress.

I have been on the deep end of depression too many times I would like to admit. It is a never ending battle!

I have said on many occasions that people would be better off without me! But the truth is the people who truly care about you will be affected in more ways than you or I can imagine.

I am so lucky to have a great support system! I have a great wife, a wonderful daughter family that cares. and just as importantly I have an amazing Counselor!!

I have had some real trials and tribulations in my life, some self done and some that happened to me. I am learning that this is just part of life. This doesn’t define me!

I have even thought about committing suicide! Yes people who seem strong get weak too!!

I wanted to post this because I have been dealing with so much lately that I sometimes I forget about what I am doing also. Depression has been in full force since my terminal diagnosis. I am fighting everyday with myself. Right now I hope I am winning. I guess I will never know!

 

Today… What does one of those days mean to you??

Well let me tell you what “One of those days” mean to me….

Today sadness has been my friend. Depressed that my life is changing. I know I shouldn’t be putting this on my blog. But this is part of life… MY LIFE!

Life is always changing… Well change is not always easy too! I am adapting to the NEW ME!

Will I be able to accept this I don’t know. I do know I have said I am adaptable, but I need to really look to my inner self and say “Are you ready to adapt?”

I think I am…. I hope I am!!

I love life even with these diseases I have. I learned to love life!

Just been very hard to know you want to do things but aren’t physically able to do them.

I have taken many steps back, for the better of my health. It has been the hardest decisions I have ever made since finding out I have Sarcoidosis…

I am fighting an inner battle to figure out my strength. I know it is there just have to find it again!

Just know I am always with the Rare Disease Community and will pick my battles. If I do step back from certain events or fights it is only because I need to get better.

I need to have an internal peace… I can honestly say I don’t know what that is! But I am looking for ways to get there.

I will leave it with this:

My new phrase is: ” I AM SCARED, BUT I AM TRYING!” That is all I know how to do!

My Sarcoidosis Story

You get that call you feared. You have cancer. Hours go by. You decide how you’re going to tell your family. You research treatments and statistics. You start to wonder if you’re going to die.

This was a reality for Frank Rivera.

In 2004 he started having breathing issues and couldn’t walk for any amount of time. He was also experiencing severe cough and pain in his lungs. After a biopsy showed lumps in his lungs his doctor would diagnose him with lung cancer.

Frank would later find out this was a misdiagnosis and would spend the next 4 years battling cancer he didn’t have, and enduring other medical complications due to the error.

“I received courses of chemotherapy and radiation. The treatments took their toll. At one point I weighed a mere 98 pounds.” Frank said.

In April 2011 an oncologist surgeon at Stony Brook Cancer Center in New York State correctly diagnosed Frank with a disease called Sarcoidosis.

According to the Foundation for Sarcoidosis Research (FSR), Sarcoidosis is an inflammatory disease characterized by the formation of tiny clumps of inflammatory cells—called granulomas—in one or more organs of the body. This disease is difficult to diagnose, and many patients suffer for years before arriving at the correct diagnosis.

Throughout his life Frank has witnessed the toll medical issues can take on a family.

When Frank was in kindergarten he was diagnosed with Childhood Leukemia in which he missed half of kindergarten through half of fourth grade. He would also end up in foster care after his mother had major heart surgery, 1 of 8 heart procedures she would have in his youth. It took a year until she was medically cleared to take care of her children again, but it wasn’t the last time Frank would spend time in foster care due to his mother’s medical condition.

He knew he was in for a fight.

In 2009, Frank met his now wife Diana online and moved to New York to be with her. He worked as an office for manager for a few years before owning his own concrete sealant distributor. In 2010 he learned that Diana was pregnant. Their daughter, Isabella Joy Rivera was born prematurely in January 2011. She died after a five days.

“It broke our hearts to the core. That was the hardest thing I ever dealt with, more difficult, even than being sick.” Frank said.

Frank said the difference between losing a loved one and watching someone you care about suffer, and being ill yourself, has to do with control. When he is sick, he feels that he has some control over the situation. But there is nothing worse than not being able to help a baby, your baby, born with no defenses. That is a feeling of total powerlessness, he said.

A few days after his daughter’s death Frank was back in the hospital for lower abdomen pain. After x-rays and CT scans the doctors told him it was his IBS acting up. He would return a few weeks later with the same stomach problems, as well as breathing problems. This is when Frank would find out he has Sarcoidosis.

The cancer treatments on top of the new medication Frank was taking to treat Sarcoidosis left him in the hospital for 25 days in late 2011. He would have his gallbladder removed along with a foot of his colon.

“I was on 40 mg of Prednisone as well as Klonopin and Mysoline for the tremors, Zoloft for depression, Protonix for the heartburn, and Advair for the lungs.” Frank said.

In 2012 Frank had another surgery to remove his colostomy bag. A few weeks later his colon ruptured, and he ended up with sepsis. The doctors told Diana that he had a 33% chance to live. He was on life support for 3 days during which the doctors reconnected the colostomy bag. When Frank woke up with a smile, the doctors told him it was a miracle he was alive. He would later have surgery for incisional hernia making it six surgeries over three years.

Last year (2017) Frank was diagnosed with Parkinson’s Disease.

Patients with Sarcoidosis can experience other complications associated with the disease and medicines according to FSR. Sarcoidosis is classified as an inflammatory disease, though it takes on many other diseases symptoms. This makes it difficult for doctors and researchers to determine the cause and produce a cure.

Recognizing through his own fight that patients need to be diligent in their own care by keeping up to date with new medications, treatments, and research, Frank started Sarcoidosis of Long Island nonprofit.

“We fight for those who can’t fight for themselves.” Frank said.

Sarcoidosis of Long Island is an advocate organization that works with local county, state and national government officials to gain recognition and raise awareness for the disease, according to their website (www.sarcoidosisofli.org).

Frank said starting the nonprofit was tough, but worth the challenge. He said that even if they can help one person it was worth it.

Frank’s organization has had three Sarcoidosis 5k Fun Runs, a movie fund raiser, and a Friendly’s Dinner fundraiser. Their 5^th Annual Sarcoidosis of Long Island Awareness Walk is on April 20, 2019 in Mount Sinai, NY. The event is held in conjunction with walks all over the world supporting Sarcoidosis patients and research.

“I want everyone to know that no matter how hard this disease has affected my life, I will keep a smile on my face. Even though I am on disability, I know that it may have changed my life, but it won’t run my life. I refuse to give in to this disease. There are days where I cry and ask, ‘why me’. I just answer myself by saying God only gives you what you can handle.”

Through his organization Frank has worked with the state of New York to get a resolution passed making April Sarcoidosis Awareness Month. He has received a letter from President Barack Obama for his hard work and dedication and is working on a federal resolution with Senator Chuck Schumer to make April Sarcoidosis Awareness Month on a national level.

In 2016 he hosted the event A Day for Rare Diseases. The event featured speakers from all different aspects of the rare disease community including government officials.

Frank is currently working with Stony Brook University Hospital in Stony Brook, NY to host another Rare Disease Day. The event will help raise awareness for the 7000 rare diseases.

Frank has received several acclamations for his individual work and work through his nonprofit.

Frank was nominated by Global Genes, a nonprofit that serves the rare disease community, for advocate of the year. Global Genes has also nominated Frank for their annual Rare Champion of Hope award. He has also been nominated for four awards by WEGO Health partners, Patient Leader Hero as well as Best Kept Secret. He was also nominated by RDLA for advocate of the year.

In December 2017 Frank was named People of the Year in the newspaper organization TBR News Media six newspapers one being The Village Beacon Record News.

In 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill. They did a whole segment on his struggles and strength dealing with these diseases.

Frank turned 51 last year. He said what defines him is his strength to carry on, and that Sarcoidosis is what he has not who he is. His mission in life is to help others that have diseases where on the outside you look fine, but on the inside the pain is unbearable.

“As I turned 50 I realized how much my past has made me who I am. It’s why I do what I do. I am a fighter. I am here because I am a fighter!” Frank said.

“I was told many times I wasn’t going to make it, but here I am.”

Frank said he owes it all to his mom. Watching her endure all the medical procedures throughout her like taught him to always fight. She was sick for most of her life and fought for Frank and her family.

Frank lives this every day.

Mental Health for a Rare Disease Patient

Hey all! I am writing this to show you my mental health journey!

I have been dealing with mental health and depression for a long time. Not just due to my Rare Disease conditions but due to life. Many people don’t know that about me.

You see me smile and being happy most of the times but for the most part that has been a defense mechanism for me. I am not always depressed, but I fight depression almost every day.

A little background on me is that I have been sick in so many different parts of my life. At the age of 5 I was diagnosed with childhood leukemia which kept me out of school from half of kindergarten until 4th grade. It was tough not being able to do things because you are tired. It did make me a smarter person though, because in that time I read (I am dating myself here), The World Book Encyclopedia from A-Z, the 1972 edition. Yes I am an old nerd!

I don’t say much about my childhood, because I was always told not to use it as an excuse. I don’t use it as an excuse but more as this is what brought me to where I am now.

I went through some rough things as a child:

• My Mother was sick with Heart problems for as long as I can remember. She had over 8 or 9 open Heart operations. We were told too many times that she wouldn’t make it through the night. I remember one instance in particular that in 1975 my grandmother was told in front of my mom by the doctor that she wouldn’t make it through the night. Well the next day came and my Mom woke up and told the doctor to “F” you. I tell you about this because now you know where I get my fight from!
• When living in Amityville NY, our house was robbed multiple times. Can you imagine being in the house being able to see the robbers then hearing your Mom scream because one of the robbers cut your Mom’s face? Well I can believe it! It is one of the worst scarred memories of my life.
• Because my Mom was so sick our family, the children, had to go to foster care for a couple of years. My two older brothers went together to one house and My younger sister and I went together in different homes. The first home was very abusive, mostly mentally. I was locked in a room for 30 days straight, even though at the time I was still sick. There was more but out of respect for my family I won’t go into details. That may have also something to do with my inner strength.
• We have fought as a family to move forward and get to where we want to be.

Some really great memories:

• My Mom coming home from the hospital all those times! Especially when she was able to take us back from the foster home for good.
• Moving to Centereach NY and playing all the time outside. We played so much sports. I loved being able to play sports with kids older than me and keeping up.
• Starting to run for Centereach High School. So many great memories and being so competitive I loved beating people.

Now let me talk a bit about me and depression!

I have always been the strong one! I hardly ever show me feelings. I have to say I have been better with this now. Took me a long time to open to people. I thank my Counselor Debby for that, as well as my wife Diana.

I have always been smiling as a defense. I always really gravitate to the song “Tears of a Clown” by Smokey Robinson. That is me to a tea!

For a long time instead of facing my past I ran from it. Now that I face it more and more, I have realized that there is so much I have blocked out in my childhood life. Especially being sick as a child.

Now back to more current things.

I had to move away from my daughter in Oklahoma because her Mom’s family threatened my life even pointing a gun in my face. I kept in touch then her Mom’s family ran away from me. The only way I found out was looking on Google. Took me 4 yrs to get custody of my daughter. There was a lot of depression due to that. I really can’t go in depth but do know the depression was at the highest ever. I felt like I let my daughter down.

When I was diagnosed with “Cancer”. I went through a rough time, dealing with being constantly dealing wit the side effect of chemotherapy and radiation. I remember crying by myself while throwing up for days and not being able to eat. I remember going down to 98 pounds and just always being out of energy but trying to work through it. I never did have anyone to talk through this time. At least I had my daughter Savannah to keep me going!

So when I was told I was in “remission” I moved back to New York and moved in with Diana. All looked great! Diana got pregnant and we were having a girl! In January 3, 2011 we have a beautiful girl named Isabella, very premature. We were told she wouldn’t make it through the birth. She did! We were so happy! We knew we were in for a fight but fight she did. She fought for 5 days so hard but wasn’t able to fight anymore! The devastation of loosing our child can’t be described. It was so heart wrenching and brought up many internal problems for me.

At the end of January 2011, I ended up in the hospital with stomach problems. While there an X-Ray showed I had masses in my lungs. I was so devastated that I thought my “Cancer” came back. Low and behold it was a disease called Sarcoidosis. So now this started my ride of my life!

Due to Sarcoidosis being misdiagnosed as cancer for 7 years I wasn’t treated for it. Because of that I have Sarcoidosis in over 80% of my body! The pain caused by Sarcoidosis is so intense that I live with a pain tolerance of 7 every day. I have had 9 operations due to this disease including coming within inches of losing my life. In April 2012, I ended up with a hole in my colon with Sepsis in my whole body. I went in surgery on Monday morning and I don’t remember anything until the following Thursday. I was incubated that whole time.

With the disease about 2 1/2 years ago I was told they don’t have any more medicines to help me out with Sarcoidosis. That put me in a slide to where I contemplated suicide on too many days. So I was at least smart enough to ask for more help. I signed up myself in for a 72 hour watch in the hospital. The best decision of my life.

I felt like I was a burden to my wife and my daughter and they have been through enough of me weighing them down. I am on disability and we lost so much in salary as well as lost so much freedom because we didn’t know how I was going to feel each day. I was losing friends, I was losing me!

I know it is tough to do but it saved my life! To this day I still see a counselor and fight depression everyday.

I won’t lie as I write this my depression is at a very high level. So much stress of trying to please everyone but forgetting about me. I have had 2 mini strokes in 6 months. I was told to cut back my advocacy. It is something I love to do. Not just for me but to help so many others that deal with what I do on a daily basis.

I have been crying a lot more lately because things are setting in. Being told that it is not if but when I will have another stroke, but will it be mini we don’t know. Also the constant feeling dizzy and double vision has been very hard to deal with. I know I am not doing well and am not getting any better. It is a realization that is so tough to face. Mortality is something we never want to deal with but guess what? It is there!

Then to hear that you are even more limited is very tough!

I am always fighting battles everyday! The battle internally, the battles of people saying you look great, then the battle of people not believing you!

I am trying to fight for my life! I am truly trying to fight for others but I am really am fighting for my real life!!

Am I winning? I don’t know!!

I HEAR YOU! I AM ONE OF YOU! i HOPE BETWEEN THIS AND MY PROJECT I WILL BE ABLE TO HELP YOU!!