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!!!

Author: fjr311

Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Patient Ambassador for Illumina Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.

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