Posts tagged #janssen

Growing Stronger Together

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Whenever I hear a group of advocates says “I found my tribe” I smile cause that is the best feeling. Then I think who the hell is my tribe? I have so many breast cancer connections that I often find comfort there. But is that my tribe? That feeling of “oh my gwad they truly understand”. Sure they are my breasties that I would be lost without that is factual. See, I was always the one that had such an array of friends I did not know which group was really mine. Yeah I hung with the jocks thanks to my BFF Alissa, hung with the stoners thanks to my HS boyfriend and the preppy crew, and even hung with the smarties. I never had a tribe I just had people. The same thing happened in my adult pre-stupid dumb breast cancer life, I love to just have an enormous group of peeps around me. Then I was diagnosed with cancer….dun dun dun. I realized fast who would be there, who would cheer me on and who would leave. Honestly, at the time, I was pissed but now I get it and it actually helped me. My large circle got smaller and I needed that.

 

As an advocate, you look for those who understand your mission, believe in the cause and want change. So clearly I could find some in the breast cancer community. Like all other advocacy, the BC people divide up by type, stage, and even gender. Fran,kly, it was confusing to me I am a team player and if I wanted in on the Triple Neg awareness why the hell not? But nonetheless there is a divide but I still found my people there.   We waant real education, real change, and reality checks. I love that!

 

Then one year my very dear friend Jen from Booby and the Beast told me to apply for HealthEvoices. What the hell is that? I have been to YSC and LBBC aren’t I supposed to stay with my people? But I thought “shit sure I will apply”. I had no idea what to expect none. But Jen was going to be there and I got to meet Uzma, Brandy and Claudia so win win. That year I arrived and meet Marisa striaght away and it was really amazing to connect with her because she was doing such great things in Lupus but I do not have that so I thought no big deal so far. I also forgot to pack underwear but that is a different blog post I suppose.  Bonus was I found fast was that the Janssen and the Tonic team put so much heart into  conference it is impossible to not feel the love they are spilling for us. They care which really made a difference to me. I never once felt anything other than that.

 

Opening ceremonies I sat in the front with Marissa , I was so eager to hear Jen speak! I was quickly immersed into  the stories being told from the HIV, IBD and many other communities. I remember thinking “WOW there is advocacy all over” And then Chrisa got on stage and she started to speak. She talked about her son who is schizophrenic and what it was like raising him and being his caretaker. She said something that I’ll never ever forget.“Why is it OK and acceptable to give our child chemotherapy if they’re going through cancer. But if a child has a mental illness we all gravel and are shocked when we want to give them medicine“. I sat there sobbing not because of her son but because at that time my son was going through his own mental health issues and we were debating whether to put him on medication. And I thought “she gets me she understands what I’m going through”. We’ve been friends ever since and she added me to an amazing Facebook group. What a connection that was?

 

Then I applied the following year I thought shoot I had such a great time I would try again. I did not think I would be accepted but I was and I was so freaking happy. I was also there with Wisdo doing videos so it was double fun. And double the amount out of work- I was wearing about three different hats that year. So that was the year that I was told that I had MS. Truth is I  hadn’t really told many people I guess mostly because I didn’t want to admit it -stupid dumb MS. Then I met this guy Dave and he was so full of life, so vibrant and freaking hilarious. He was also in a wheelchair advocating for MS and I was in awe. I thought holy pins and needles I am going to get through this shit show. So I went up to him and I said “hi my name is Annmarie usually blog for breast cancer. But I want you know that I have a MS”  He said something on the lines of “well that sucks”. I thought this is my guy I love this dude. And we been friends ever since. Together we grow!

 

So it brings me to this year in this very long post that you probably haven’t even gotten to the end of them are wondering why she wrote it so long. I couldn’t have been more thrilled to go and  the anticipation was already leading up to it. Everybody was messaging each other and we couldn’t wait to be around one another. The year before I connected with Michelle  mostly because she sat next to me during open mic night and crack jokes. She has an extremely inappropriate sense of humor which of course I gravitated towards. So I couldn’t wait to see her. The cancer community is not just BC which is pretty freaking awesome too because I may have never met my little brother Kyle who runs Check 15. See I was supposed to go to the Cancer Summit and I ended up in the mental health summit which was fine but it made me think. I watched the Twitter feed and the Instagram feed and saw all the pictures of the different groups together -the RA, diabetes and IBD and many many. I sort of suck for not naming all the advocates, so do not be an ass check the link to HEV and read some! 

 

 

And I had a revelation. Honestly it brought me to tears. I don’t have RA and I don’t have diabetes I don’t have a lBD and I’m not HIV positive. I am a hot ass mess yes but with MS and breast cancer and a whole lot of mental health. But the truth is I am a part of all those groups even the ones of illnesses I don’t have. This is my tribe. It brought me to tears and I don’t cry easily so you know I had to be serious. Being a part of healthy voices and what Janseen has created is unbelievable to me and I am so thankful to them, they care I swear they do. I miss them come Monday when the conference is over, I worry that they are ok. I miss our selfie‘s and our laughs. And our extremely inappropriate humor sense of humor. Gabe Howard my have seen that I do not have nipples it was educational even though it possibly made a few uncomfortable...ummmm the other  Gabe. Doesn’t matter that we don’t all share the same illness or nipples or testicles. what matters is that were advocating for a change and for people to understand us. I have to say that I’m sick of preaching to the breast cancer choir they’ve heard it they know it and they’ve lived it. It’s time to preach outside my circle they have them understand what I’m going through. At a conference like this I can connect with advocates for each other but I walked away with new friends I walked away with people that I consider my family. I walked away knowing that these people advocate not just for me but with me. Knowing that if I looked like I wa sin pain at 1am they check, Rachel

  Alycia Bridges  I really do look up to you

 Alycia Bridges I really do look up to you

 


When you ask me who is my tribe is this is them! They are eclectic, they are amazing and they are empowering. They are there is you have a PTSD break down if you have and sister with cancer, if you need to talk about sex or lack of and most of all you do not have to pretend with them or share a late night pizza.  It has been an amazing few years with this group of misfits and I have been honored to be a part. And they like me they really like me!!! The bonus NONE  of them will take my tiara well maybe Robert.

Together We Thrive

I sat here and thought and thought about my blog post for HealthEVoices17 which direction to take it in. I could go on and on about everything I learned in the sessions which was a lot. I could discuss how much powerful content Wisdo got by videotaping so many incredible advocates. Or maybe I should write about Janssen and how not only did they pay our expenses but they ate with us, they laughed with us, they cried but they listened to our stories. I am talking really listened, they heard our stories from their heart. I could have also written about The Tonic team and how they made it their mission to make sure we had everything our aching bodies needed. I for sure could have discussed the Impact Fund! WOW just WOW! Maybe I could write about how I stand on things I have not done that in a long time??? HMMMMM......

Then in our closed group a blog post popped up. My new health care advocate friend Michelle wrote a blog about what fucked up shit people say to schizophrenics and one of the comments hit me.

http://www.schizophrenic.nyc/dumb-fcking-sht-people-said-btw-im-schizophrenic/

http://www.schizophrenic.nyc/dumb-fcking-sht-people-said-btw-im-schizophrenic/

And truth be told it is pretty much with many health issues. The diabetes community feels it when they eat. The RA peeps feel it when they can not move and people judge them for not moving enough. The mental illness gets wacked left and right with it for so many reasons. The HIV community lives with it and the struggle is hard. When will it end? When will people stop being judged for what others can not see or understand?

Which brings me to HealthEVoices17 and why this conference is vital to me opposed to all the others I attend. Why I care so deeply for this one. The theme of the conference was “Together we Thrive”, so true. See it did not matter to anyone at that conference if they had RA, IBD, MS, cancer, HIV, bipolar or anything in the middle. There was no judgment at all. No one carried that if you could not make it to drinks or open mic night, it did not matter if you needed a nap or more time in the relaxation room. All we cared about was that everyone was “healthy”. The concern was about self-care for the other, not selfishness. We get each other, we get the looks of mental pain, the unseen aches, the wobble or the staring off. We get the angst that others do not and want to make a difference in each other's life. We get what it is like to live with our conditions no judgment and we are still friends.

Things I am pretty proud of in the SDBC world

Things I am pretty proud of in the SDBC world

Together we thrive is really meaningful to me. No I do not have diabetes/RA/IMB/HIV but maybe if I share a blog post written by one of my HealthEVoices17 friends on SDBC someone there may connect with them. That is thriving!!! I could not do it without my friends living with that condition. You get what I am saying?? We need to stick together, we need to stop just sharing our story to our select community and branch it out. HealthEvoices connects us in a way we would never have a chance to. I wore many hats during HealthEVoices sometimes it was in the Wisdo video booth collecting stories which were so amazing that I was lucky enough to really listen to so may of my friend's lives. Or maybe I was connecting with someone with cancer who needed to feel they are not alone. There was the time I sat with the MS community learning about new drugs that are hopeful to me. But what still brings me to tears was after dinner one night we were in the bar area talking. A Janssen rep was hanging with us. Someone was telling a very intense story it wasn't pretty or happy but it was real or raw. Her hand was on his arm and she was hearing every word he said. Her eyes locked and he told his story. I know of no other conference where the rep will do that and do it with kindness. What a way to thrive! 

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HealthEVoices 2016

I am a voice. Wait when did that happen? It still boggles my mind that people read this blog let alone share it wanting sit and chat about it. CRAZY! But this weekend I will travel to Chicago for the HealthEVoices conference and I am pumped up. The first and foremost reasons are these two- Claudia from   My Left Breast and Jen for Booby and the Beast . I have been following both and "talking" basically since my dx so to be able to hug them is epic. No really, the breast cancer community is tight and these woman are like family to me so this is such an opportunity. To learn from them is going to be amazaballs (how does a blogger who talks like this possibly gets into this conference?).

I do ask myself that, why me? I am not only thrilled to be with Jen and Claudia but I am going to listen to  Trevis Gleason  talk. He is an MS advocate, chef and blogger badass. Plus having MS so I am going to no doubt have an incredible connection to him. I can not wait to hear about what he has to offer. The conference has lined up  Tim Cigelske a social media guru what he will offer me for my blog, Wisdo and Lyfebulb I am jumping out of my seat!

 

Add a little Yoga, keynote speakers and we have a bang out weekend! Janssen is who we are thanking for sending us on this weekend like no other. Putting us all together, with all different illness is pure brilliance. Think about what can be accomplished medically when those with different health issues get together and discuss what is working and not. In addition to working and brainstorming how to build blogs that will not only reach our communities but reach the masses. WOW! WOW! Yes I use caps and exclamation points, it is how I roll.  


So my bag is packed, my ticket is on my phone, agenda is planned, tiara shined and I am ready to meet, shmooze and make friends with this amazing cast of blogger. #Healthevoices2016 here we come!