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

I AM TRYING!

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!

A Doctor Appointment that Makes You Think

So lately the pain for me has unbearable. The last three weeks have been nothing but pain, stomach problems, shaking, extreme headaches and dizziness. That doesn’t even touch the mental aspect of this.

The realization really sit in today when you go to the doctor and they say here is some Vicodin to hopefully ease the pain! They also put me in physical therapy and talked about medical Marijuana.

There will be some that will say good at least they are doing something about the pain.

But then the next words out of the doctor’s mouth ” All we can do now is to try to make you feel as comfortable as possible because there isn’t much else we can do.”

When you hear that the reality of terminally ill diagnosis sets in. I have been trying to get through this, but hearing this today made it harder mentally than ever before.

What do you do or say when you get this news. My mind is telling me to fight but my body is saying I may want to give up! Well I know I don’t want to give up. I am in a fight right now…

I know it can’t be my time! Or so I hope so. I guess it is another fork in the road. Where it leaves nobody knows.

I have been through the ringer but so have so many others.

I know I pushed people away and others left because I couldn’t do anything else for them.

It is a sad feeling but like life you learn who is there for you at the roughest times in your life! But that is fine. I just know I tried my best.

I am fighting for my life, No exaggeration! My family is a major force of what is keeping me alive. But I personally can’t stop fighting for my Sarcoidosis family. I just hope I can do something to help the Sarcoidosis community.

Why you may be asking why I am writing this so late at night? It is because I am evaluating my life.

What am I here for now? Am I just here? What are my reasons to be here?

I know suicide is not in my future! But I also know for me to move forward I need a purpose! What that means is I want to keep helping, but I need to learn limit. No more pushing over the limit! I will learn that.

The mental of course is the toughest aspect of this, but I talk with an amazing counselor and I am reaching out to others. Definitely not the easiest thing to work on. I am a little bit stubborn, okay a lot! Haha.

Okay I am done with complaining!

I am not done yet! Too much needs to be done!!!

Just wanted to let you all know I will fight until my body is done!!

Please keep me and my family in you thoughts and prayers

Thank you you all for your support of my family and myself!!!

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

 

My Story Got Published!!

Just wanted to let you all know I actually got a story that was amazingly written by Nate Davis and was published by a website called Thrive Global, who is none other run by Arianna Huffington!! If you don’t know who she is check out The Huffington Post!!

You don’t know what this means to get my story out there for all of the rare disease community! I am beyond happy!

I have been through so many rough times in the past 6-8 months that I really want to make sure we get our story told and raise awareness for the whole rare disease community and especially for the Adult Rare Disease Community! We need our stories to be heard too!!

Here is the link to the story:

https://www.thriveglobal.com/stories/25259-my-life-as-a-rare-disease-patient

My life in a nutshell.

Today I woke up early. I wake up early these days not because I have to but because my body says so. Today is because of the pain.

But you know what? I am very thankful that I get to wake up! You see, somebody with a rare disease like myself can’t and don’t take waking up for granted.

I am so blessed to be here! I realize I wake up in pain everyday and can’t do so many things that others do take for granted, but I am here and I am still a force to be reckoned with! I have a voice! I will make sure people will hear me. Some may not like what I have to say but I speak so others can understand what it is like for a rare disease patient like me to live each day. I also speak for many others who can’t speak up for themselves.

I took some time to do a little recouping and soul searching recently. I realized a some things lately.

One thing I realized is that no matter what I am destined to be me. You may say well of course you are. Well sometimes we forget what it is to be ourselves. I know who I am. I am someone who cares, sometimes too much, about others and myself. I need to be me. I need to do what I do the way I do it. I can’t be someone else who people want me to be.

Just know that the person I am may not be to everyone’s taste, but I am really here for the greater good for the Sarcoidosis and Rare Disease Community. I am in it for the whole not for me.

I have said in past blog posts that I most likely won’t be here for a cure for me, but I am here for a cure and to make a difference for so many others that have a rare disease.

I really am not a person who thinks I am better than anyone else, as a matter of fact I truly believe the opposite. Ask many that know me, I really don’t know why people even know who I am.

All I am here to do is to make sure WE as a Rare Disease Community have a voice. I am one of so many people who try to make sure we aren’t forgotten.

I want one day when the over 7000 rare diseases have a cure not only 5%.

I hope to see it and get to say I had a say in that! I want to be able to say I made a difference.

So these are my thoughts when I wake up at 3am in the morning.

I hope I make a difference in your life! Many of you have made a HUGE difference in mine!

My thoughts as a follow up to What about Us?

Hey everyone I know I wrote a blog yesterday that may have caused waves among the Rare Disease Community…

Do I regret it?? ABSOLUTELY NOT!!

Will I stop talking about it?? If you think YES, you don’t know me by now!

I have been thinking more about this today. I am not against anyone at all! I am not against that organizations have said that 50% of Rare Disease Patients are children.

I just want to not be forgotten. I also want to make sure that in our community there isn’t a feeling of separation.

I know we don’t discuss this often. I FEEL WE NEED TO AS A COMMUNITY!

Why shouldn’t we discuss this as a Rare Disease Community?

Why should I or anyone else be afraid to discuss this or feel sorry if we bring up an adult that has a rare disease?

I really have been thinking about this so much lately. I guess partly because as an adult with Sarcoidosis, Sjogren’s, and Parkinson’s I shouldn’t be ashamed. I am not saying anyone has made me feel this way personally, but I always have felt that this has been the elephant in the room.

I am not here to pull apart the Rare Disease community. I am here to bring the community together. If 50% of the rare disease community are children the other 50% are adults. We are all part of the community! I never had a thought on my mind that I was advocating for a child or an adult. I was advocating for the 30 million rare disease patients.

What actually had me write the blog yesterday was not just seeing the Today Show spot yesterday morning but also just laying here as usual in so much pain and thinking how much as an adult patient people don’t realize what we go through also. Also being told by some TV and newspapers and I quote “That there isn’t an interest in knowing about an adult patient.” Are you kidding me??? Also when interviewed I have been asked on multiple occasions “How many Children have your disease?”

So then I think.. What are we doing as a Rare Disease Community to help raise Awareness for adults with Rare Diseases? I realized NOT ENOUGH!

It is not fair for anyone to have a rare disease! I know life isn’t “FAIR.” But to be pushed away from everyone and then to feel like this is a taboo subject is ridiculous.

We as a community shouldn’t have any taboo subjects!

I really started thinking of all of the conferences, all of the government officials I have talked to, all of the rare disease community events, and also all of the television spots about rare diseases we mainly hear the numbers of children. Not that it is wrong, but what about us as an adult community.

I have been thinking about this for months. I decided to speak up now because with my health getting tougher to deal with and with so much to look forward to like moving forward as an organization President and also on a personal level. Knowing that I most likely won’t see a cure for any of my diseases is really so tough to get through my mind.

I am not here to make you feel sorry about me at all.

I am just talking about how I feel as an adult rare disease patient.

I don’t know how it is to be a rare disease parent and hopefully never will.

I do know how hard it is as a patient and do know hard it is on my family and worrying if I may pass it down to my daughter since we aren’t sure if it is genetic or not yet! I also understand on how hard it is to raise a family on a very limited budget due to my disease. I also know what it is like to see the ones you love worry everyday about me!

I also know what it is like to be looked at like there is nothing wrong with you! To be told you look great! To be drug tested when I go to the hospital! To be told there is nothing wrong from emergency room doctors!

The worse parts of these diseases are:

To be looked at from people you know and think that I am faking it!

To be worried what people think of you!

To be told by specialists that there is nothing else we can do for you!

To be in pain EVERY SINGLE DAY!!

I am an adult patient advocate!

I am an adult rare disease patient first and foremost!