Jen Brea on ted talks

seeing this bring on a lot of open dialogue where people are posting
they are eager to talk,discuss,be heard, dissect get this on the table

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#

Jen has made a documentary on ME called 'canary in the coal mine'  really for more advancement check her site http://www.jenniferbrea.com

Angela, Kristina's partner answers a few

(Admittingly so it felt a bit awkward addressing the partner who is with someone with ME, i found myself concerned i was undermining the person with the illness, I'm thinking this stemmed from watching family dynamics while the partners went day to day with cancer. emotionally, physically hard, Angela reminds me of what i saw during that time  'you take the good with the bad' )

You were already together when kristina was diagnosed,

from your perspective being in a relationship with someone who has ME

what are some of the adjustments you’ve made together or individually?

We have learned that we now have to plan ahead and we can not be spontaneous like we once were. We have to take each day as it comes. Before she got sick, we were able to just get up and go and do whatever we wanted. Planning is a must because activities she once was able to do with no issue ends up wiping her out for days or weeks. We both had to learn to both be more patient with not only this disease but with each other. 

the severity of symptoms seems to vary  do you and kristina have a system?

considering the  line gets blurred between caretaker and partner how do you

guys keep your ‘viability' rather than the illness consuming the lives in one way or another

like kristina said, “i need to have a purpose”

I don't see it as being a caretaker to Kristina. Our relationship is still equal. We had to learn more patience and understanding. It has definitely tested our relationship and it's been very hard at times. It is very hard to see someone you love who was full of life bedridden and sick most days. It was very hard in the beginning for me when we did not have a diagnosis. Watching someone you love who is clearly ill and not getting any answers is just as frustrating for the person who loves them. If any good came out of this, it did make us stronger as a couple because it showed us that we can weather any storm. I know in my heart if our situation was reversed, she would do the same for me. How we get by day to day and not have this disease become our entire life is to remember we are a couple and try cherish those good days when they come because you need them when there are bad days. 

not knowing you at all so i don’t know any background,

has this given you any spiritual break throughs or breakdowns, realizing some

things in life we thought were so important,really aren’t its a strange cycle really

You realize that you never take a day for granted with a loved one. Life is too short and goes by and in a blink of an eye, everything can change. Especially when you are not prepared. You just take the good with the bad and just keep on keeping on. 

is there any one thing that you would

like to share for other partners that are in a similar situation, from you or what you see

from kristina’s view 

(in my mind i always like people to know they are’t alone there is always a relating story)

Never give up on love. It can be very hard and sometimes even frustrating to see someone that you love so much suffer so bad, especially with a disease that people just don't understand. It's hard to explain this disease to outsiders. True love only comes around once in a lifetime and when you're in it. You are in it for the long haul. You never give up. 

There are times where she gets down about herself for not being able to work or do things like she used to. I have to remind her that she is loved and valued even when she at times feels like this disease has taken everything from her. I let her know as much as I can that the one thing this disease did not take is me. 

Kristina and Angela below

kristina answers 6 questions

what was the cause of your ME?

I was diagnosed by the late Dr. A. Martin Lerner in 2014 after a severe ear infection that required hospitalization. After this infection, I became profoundly ill and bed ridden. After seeing many doctors and being tested from everything from Lupus to Lymphoma, I finally got to Dr. Lerner. He diagnosed me with chronic EBV, CMV and HHV6 viruses. I admired him so much and his passing was a huge loss for all of us with ME/CFS. I try to honor his memory whenever I can because he literally devoted his life to a patient population no one wants. 

what were you doing in life prior?

I was a very driven, career oriented, active person. I was an advertising sales director/manager, I was also studying to become a lawyer. Before this, I also studied to become a chef. I had just gotten married. I loved to travel and was a vibrant and engaged person. 

are there any enlightenments that came with this package?

It was very hard to accept my "new normal". I think for me the biggest loss for me was not being able to work any more. My work and my career was everything to me. When you suffer from this disease, there are many things you have to mourn. I have had to mourn the loss of my former self. I have had to mourn the loss of goals, dreams and plans. I have had to mourn relationships with people who move on because they don't understand or have the time to wait for you. This disease has taken a lot from me and on my worst days it feels like I am in a Dickens novel where I am visited by 3 ghosts and I can see life go on all around me and glimpses of the past and what would have been my future and I am unable to participate in any of it. It's very difficult to watch life moving on without you. I could say my "enlightenment" would be had I known this was going to happen to me.. I would have done even more with my life before I got sick. I am now also trying to find my new purpose in life. I need to have a purpose more than spending my life in pajamas and in bed. I think I am getting close to finding out what that is... I hope anyway. 

what type of medical treatments do you receive from far left to right if any?

Dr. Lerner had me on the most aggressive form on Antiviral therapy there is. I was on Vistide/Cidofivir. This therapy was brutal however, it proved to be the most effective for me. Unfortunately in the middle of treatment (over 6 months of it) my platelet count became dangerously low and Dr. Lerner passed away. This protocol actually gave me some quality of life back but because it's controversial and dangerous; most doctors won't even entertain it. I am now with Dr. Susan Levine in NYC and I am on an aggressive dose of oral antivirals. I am going to be speaking to her about trying LDN. I also have to take pain management for the severe inflammation and pain in my joints and body. Sometimes the antivirals side effects are worse than the actual disease. I am pretty much willing to try whatever it takes to have some sort of normalcy in my life. 

i see a cat picture on your Facebook page  what does your cat think?

That picture is of my precious Gabby. She passed away 2 days after Christmas 2016. Gabby was my "soul cat". When I was in a bad flare or sick, she would never leave my side. She was amazing. I am tearing up as I write this because I miss her and her unconditional love. On days where I would be bedridden, she would snuggle up next to me and just having her near me brought me so much comfort. It was very hard to say good bye to her. But she was sick too and lived to be about 16. She was a good girl. 

(sorry about gabby,she sounded amazing and i totally get the comfort that our creatures bring us)

lastly  what thing do you do in life (could be the smallest tiniest thing) that makes you feel

“oh man I’m alive"

On those rare days where I feel well enough to leave the house.. I make sure I put on make up, try to make my hair look nice, put on a nice outfit. I was quite the fashionista before I got sick. I have a rebelious streak so, there are days where I get defiant with this disease. So, when I do these things for myself it's becauase I still have that hope that one day they will find a better way to manage this disease or even a cure. I dream of returning to my former life.