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!!!

I Feel Useless!!

What to do when you feel like there is nothing left?

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!

 

Right to Try

My view on Right to Try:  PRO Right to Try.

This post was not made because of any political view at all. I hope it doesn’t get caught up in the political climate that is out there.

I never want anyone to have to go through what I have been through! I have been on different sides of this debate but when you don’t get approved for 5 clinical trials ad Compassionate Use wasn’t so Compassionate to me. I also hope that nobody has to sit in the doctor’s office and hear “I am so sorry but we don’t have any other medicines for you, like I have done. The words you are terminal is something I never wish on anybody!

I am writing this so hopefully nobody else has to hear I am so sorry but because you have 3 very active diseases I doubt any experimental medicines will work on you. So as you can see I am not for Right to Try for me. I am fighting so there wont be too many more like me! I am also not writing  this for pity, NOT AT ALL!!! I want people to hear and ACTUALLY LISTEN to what a patient has to say!!! Stop thinking you all know better for me then I do!!!

I am Pro for many reasons.
My first reason is that I don’t believe that someone who doesn’t know me should decide whether or not I should be able to try a clinical trial or drug that may have a chance to save a life of a patient especially those that are terminally ill. When there is a chance to help someone who is terminally ill they should be able to. The way that clinical trials go now they can take up to 7+ years just to start a clinical trial that patients are involved. Most terminally ill and chronic patients don’t have that much time to wait.
Another reason I am for it is due to my history with the system . When doing a clinical trial right now the pharmaceutical companies are only going to take the perfect person who fits the trial. So many people are denied because they don’t fit the criteria because the pharmaceutical companies need the best results so the FDA will approve the drug. With the Right to Try bill terminally ill patients have the chance to try the same medicines that are in the trials, first of all earlier, they can get into the trial after the FDA approves the first level instead of waiting for the third FDA level of approval.
Another great part of this bill is that if a terminally ill patient goes into a trial it doesn’t affect the trial results.
Why I feel that this will help the Sarcoidosis community is because there are only two approved drugs for Sarcoidosis, prednisone and acthar gel. Neither is a cure and at best only suppresses the inflammation plus the side effects of those medicines are almost as bad as the medicine itself. Also because Sarcoidosis attacks any part of the body the two approved medicines don’t help all those parts. In the past 18 months over 50 Sarcoidosis patients have died. If they were allowed to decide if they wanted to try a clinical trial drug for Sarcoidosis, maybe some of those patients might not have died. Even if it saved one person then I believe that it is worth it.
I know that other Rare Disease Organizations were against this bill because they believed that it would give people false hope. I understand that but I feel they are underestimating the patients, doctors and the families. I believe that each patient should know the risks of each trial and either the patient or the family or caregiver should have the chance to say yes or no. Even if they make a rush decision that is up to the patient who is terminally ill. Also when a patient is terminally ill they don’t have many or any other choices. Are they suppose to just give up? I am a terminally ill patient and I refuse to give up.
The medicines that are being offered after the first level clinical trials still have to be approved by the FDA to get to the next level. So these drugs or treatments are at least initially approved by the FDA.
To wrap up I know as a terminally ill patient that I would investigate the treatment first to see if the benefits will outweigh the side effects or negatives. If I feel that it wouldn’t help me I wouldn’t use it and I truly hope that the patients, caregivers and most importantly the doctors research any trial medication before giving it to a patient.

I have always said it is never too late to have HOPE!
Personally I have a wife and daughter to live for. My daughter is turning 16 in December and I want to see her sweet sixteen, her graduation, go to college and see her get married. I will not just roll up into a ball and give up. I have always been a fighter and always will be.

Here is an article that I am in on my stance on Right To Try:  https://alsnewstoday.com/2018/06/04/rare-disease-advocates-line-up-to-both-praise-and-criticize-us-right-to-try-law/?amp

Here is my NBC NIGHTLY NEWS INTERVIEW on Right to Try:

https://www.nbcnews.com/nightly-news/video/-right-to-try-bill-advances-would-allow-some-patients-access-to-experimental-treatments-1242943555808