Things that need to be said.

Today has been a real tough day for me. As you all know I have been going through a lot lately. As per usual I only tell half of it. Why?

There are many reasons for this. I don’t want to be a complainer. I also need to keep things to myself so I don’t worry others. I know that isn’t the best way to do things but it is me. So I do what I feel is necessary. For me and for the benefit of others. I know that is selfish of me, but sorry not sorry, deal with it.

Most of my life has been a series of ups and downs. I am sure many of you know what that feels like.

I have dealt with childhood leukemia. I have dealt with foster homes. I have dealt with my Mom being sick most if not all of my life until she passed away in 2001. I dealt with my father not being in my life most of my life.

I say this not for pity at all. I say it for understanding. I always thought in the ways of survival. Not in the ways of right and wrong for a long time. Don’t get me wrong I didn’t look to do bad things. What I am saying is that my decision making was skewed by how to survive. Let me tell you it sure is not a great way to live. Not at all!

So as I grew up, it took me awhile to figure that I didn’t have to think like that anymore. It was freeing. It was also scary for me.

So life made me who I am… Isn’t that what life is suppose to do?

So I get the call today.. Something I have been told by others but hearing it from this doctor makes it so real…. Don’t keep your hopes up to get your defibrillator/pacemaker.. No surgeon or doctor will do any kind of surgery on you now or maybe even ever… My white blood cell keeps on going up and up. So far up that nobody would dare open me up for anything. What makes it worse is that they have no idea why it is climbing.

So if I go in the hospital with my White Blood Cells so high I will catch something and possibly die. If I stay home I could catch something and die. So what do I do? I have made my decision to live. I can’t live on the what ifs. I can’t live my life in a bubble either. I haven’t been feeling well lately. But every test has come back normal. What is it? We don’t know.

I do know one thing…. I am going to fight and be me. I am not trying to die but I am trying to live while I can. I won’t lie the news did depress me. It is scary to keep on hearing bad news after bad news.

So I wrote this post because like the title says these are things I needed to say. I may show an outward strength, but I am just human. I worry, I get depressed, I cry, and I ask why me? I also ask how much longer can I take this?

I do know that I will still be me, smiling, fighting and saying I will be okay. But know deep down I am scared just like anyone else would be. I am wondering what is the right thing to do?

So we you see me smile just know that I am not “fine.” I am just being me and not showing everyone the physical and most importantly mental pain and anguish. I am also not showing the uncertainty of am I doing the right thing and for that matter what is the right thing!!

Just know I am not ever giving up. I am just doing what I know to do. Is it right to put on that strong face? For me that is who I am. I will be a bit more making sure I am being careful, but I need to be me.

I don’t know if this post makes any sense at all. I am a bit scrambled lately. But I always have been one to say it how it is. I also have always written what my thoughts are right now! I hope you can understand and truly get to know me.

Why I do this!

So today I have been just thinking “Why I became a patient advocate?”

I know many of us advocate have different reasons why we do what we do. So I just wanted to reach inside and figure out why I do this . You see being a patient advocate is a very tough job. Many times it is a job that many people will not recognize you for what you have done. Then there are so many others involved that know what you have done. Then there are other times where if you wonder if you are doing enough. Especially after seeing people you know or grown to love are passing away.

So after being in deep thought these past couple of days, mostly because I keep hearing bad news from doctors for me. No I am not self pitying myself at all. It is just reality! My health has been on thin ice for awhile. Unfortunately all it takes is one thing and I may be down for the count, forever. That is true with many with rare diseases.

In my community it is always so hard to see people passing away and so frequently in the last couple of years, over 80 in the past 2 years that I know. You see they, the doctors and researchers, say you don’t die from Sarcoidosis! Well I call BS. To be specific, we might not die from Sarcoidosis, but most of us will die from a Sarcoidosis related side effects. For example, Heart attack, pneumonia,lung transplant, neurological issues and any other organ issues that our Sarcoidosis has affected.

In my case most likely be because I am too sick to get a surgery or two that I definitely need. We have been putting it off longer and longer because I keep getting worse not better. So what is the answer? I don’t think anyone knows that. You see I was suppose to die months ago. At least that is what I was told. A year ago April I was told I have a couple of months to live. Did I believe it? Yes! Did I accept it NO! So I know what ever happens from that time is suppose to be icing on the cake! But honestly who wants to die? I truly thought I am ready to die. I am okay with it! Well I am lying! I am not ready! I never will be ready!

Why you may ask?

Many of my reasons aren’t about me. It is because of my family, it is because of the Sarcoidosis community I fight for. I love fighting for my community. It is actually one of the big reasons I do it. I want to find a cure! Whether it helps me or not that is not the objective. My objective is to leave this world in a better place when it comes to Sarcoidosis and any other rare disease. Odds are we won’t find a cure in my life time, but if we are moving forward and are in a better place with Sarcoidosis then I can die content. My mission when I started my organization was to be able to say I helped at least one person! That was and is still my goal. Whether it is with finding that person with information about the disease, finding someone a doctor, or just being able to ease their mind to let them know they are not alone! So you see I am not ready to die yet because I don’t think I am done with my mission.

That leads me to a couple of things of what have made me happiest about being a patient advocate.

It is not the award nominations or winning an award. It is not the recognition I receive, if you know me at all knows I would rather be behind the scenes setting everything up. It is definitely not the speeches I do, though I have learned that telling my story does have impact on other patients and also others in the field that I communicate with, government or pharmaceutical companies.

What makes me so happy about what I do is things like:

1- When I get a phone call from a Sarcoidosis patient when they see on television that Senator Schumer spoke about Sarcoidosis when introducing Hillary Clinton at the Apollo. Just to hear their voice that they were acknowledged. Also to know that I was able to reach a Senator enough to speak about an invisible illness. Not just an invisible illness that you don’t see our pain but an invisible illness that it was hardly ever spoken about.

2- Having a patient call me to say that they were ready to give up about their Sarcoidosis, because nobody understood, and they saw my website, or blog and saw me fighting and they read what I went through and they said to me that if I can fight so can they!

3- Setting up a walk for the first time 5 years ago and continuing to see all of these Sarcoidosis patients coming from all over the USA to connect with other Sarcoidosis patients. To see them smiling and talking to each other truly brought tears to my eyes. To see them come up to me smiling and crying and thanking me for doing this and showing them they are not alone. One of the best feelings in the world is to see how many of them became patient advocates and advocates for someone they love is actually the best feeling in the world to me!! Knowing that even when I do pass away we have so many great advocates for Sarcoidosis. That they will carry the torch for Sarcoidosis for many years to come!

4- I love when I am able to do something out of the ordinary for a Sarcoidosis patient. Something that they never have expected. I don’t publicize that I do it. I just am happy to see or hear how much it has helped either them or their family. Some recent examples is being able to have Sarcoidosis patients and caregivers on a billboard a couple of times in Times Square! The first billboard was on Rare Disease Day that I set up. After that I was able to work with the billboard company two more times to get Sarcoidosis patients and Caregivers pictures and something they wanted to say about Sarcoidosis. I did it not to promote me or my organization, but to give these patients the power to say “Look at me! I am here!” It also was done to let others know that they were not alone and they had someone to talk to.

The biggest thing that truly made me so happy was just last month. I was able to work with the Brooklyn Cyclones to have a day for one of our younger Sarcoidosis Warriors as a Cyclone for the day. I know our Hanna was embarrassed about it, but she will have something to talk about for the rest of her days. Even if it is just that she got to sit next to the HOT GUY on the team and get a picture. She was also able to throw out the first pitch for the game. She did an amazing job! It also was for her family. I wanted them to know that we appreciate everything her family does for Hanna and all of us in the Sarcoidosis Community. I love seeing all of their smiles. I love that Hanna came up to me and said “Thank you and I Love You!” That made the whole day worth it!! All the pain and travel was worth it at that direct time!

So you see why I do what I do??? I wish everyone can get that feeling! Just touch one life and you made all the difference in the world!

So I guess part of me doing this is selfish in my own way! But you know what? I wouldn’t trade this for anything in the world!!

That is why I am saying I am not ready to pass away anytime soon! I want and need to do this not just for everyone else, but also for me.
I truly want everyone to know that no matter what happens to me that Sarcoidosis will be cured. It is moving in the right direction!

When I started this 7 years ago, I never would of believed we would be where we are. Thank you Foundation for Sarcoidosis Research for truly caring and moving forward at a pace I never knew we would be at. Thank you to all of you Sarcoidosis patients, caregivers and advocates! What you have done is amazing, ALL OF YOU! You might not think you have made a difference but everyone that I have made a difference not only in my life but also in so many others lives. How you might ask? Everyone that I have talked to or have chatted with whether on phone or on Facebook or any other social media, just know that you have made me who I am as a person and advocate. Each story has helped me make changes and set a course for every decision I have done. YOU ALL ARE VERY SPECIAL TO ME!