Friday, February 21, 2014

ME/CFIDS Scam of the day: Call BS on the lazy A$$ name callers.

I'm not buying it and I'm not buying into hearing that it is something people should feel okay saying LET ALONE think it. 

In the last year I have been called several brutal names by my family and also received inscrutable criticism at the hands of people I thought of as my support system. I have to say it has torn me up - just to the edge of still finding the will to keep plugging along in a life with too much pain and too little validation of that pain. Just at.The.Edge.

I have been called a chicken shit by my dad.

I have been told that my grandson deserves more than me because I'm not there to tickle his back or read him a story and then had access to him withheld 

I have been told I don't try hard enough to be a grandma and I should use my 'lucid' moments trying harder. 

I have been called a scammer by more than one person in my family, to my face and behind my back.

I have been called a drug seeker by medical providers with zero understanding of the complexities of my illnesses.

I have people who refuse to allow me to talk about my medical challenges so phone calls are few and far between because the one sided conversations never fully describe my current challenges.

I don't have HIV or Ebola virus. I have CFIDS/ME. I have had it for 18 years. It started on February 2, 1996. It struck me down at the age of 35 and destroyed my career, my health and my ability to care for my children. I am 53 years old now and the cause, treatment and cure are as far away as ever

When I became ill I worked full time and played on three recreational volleyball teams. I played pickup basketball at the park with the guys. I frequently took my kids on long hikes in the foothills of Boulder County. I was in awesome physical condition with an awesome life.

So if all the labels hold true I stopped my vivacious, passionate, healthy life to become a scammer. To make up day in and day out how much fatigue and pain i was experiencing. I quickly gained a lot of weight which gives people the perception i know nothing about how to stay fit or how to use healthy nutrition to fuel healthy living.And I've been scamming since then. Scamming to live at just the edge of poverty, having to leave my kids with their dad because I could no longer care for them. Scamming to acquire, at a minimum $3500 new medical debt per year even after the use of my top of the line government health insurance. I have sold 2 houses to relieve that in the past but there are no houses to sell now. And I keep accruing unavoidable and extensive medical debt each year. It's in the tens of thousands by now.

At the time I became ill there were no tests to indicate what the cause was but there are tests now. And strangely enough even with these ominous test results I am still considered a scammer by my family.

I somehow am able to conjure viral tests that show high titers across the board on subviruses that should be lower post infection. My immune system tests for chronic infection (IGg) is consistently low which means I can't fight long term subacute viruses or bacteria very well. I have a confirmed biopsy of herpes simplex 1 in my lungs which is called disseminated herpes and once it passes the brain/blood barrier it moves around to random weak spots and if it ends up in the brain it is usually fatal. It is very painful and extremely rare.My sleep studies have consistently shown for over 5 years that I get zero stage 3 and 4 sleep which are the stages when the body releases human growth hormone to repair tissues. I am frequently accosted by the virus of the week which takes me down for weeks. At altitude now my oxygen saturation bounces around so I have to wear oxygen which is apparently a free pass for anyone to comment about and ask how long I smoked. I didn't smoke. At.All. But apparently had I been a smoker it would mean that people would have a free pass to say the most rude and judgement comment possible.

I am such a scammer now that somehow I have figured out how to give my husband this same illness so that he too can feel ill every single day of his life with unrelenting pain, fatigue and immune system challenges so that he to can be the recipient of the horrific name calling. And these are from family. His family has been just as horrific as mine. 

Imagine stretching that into the community and medical field and being told for decades that you're not really sick and that it is a mental illness or you're making it up. That shit wears ya down

I have fought so hard for validation from my family because I thought with their help I could keep fighting until there was a breakthrough in the cause and or treatment. These people, my supposed support system, function as the antithesis of a support system and finally I realized by giving them access to my heart and feelings they are contributing to breaking down my reason to live and keep fighting.

I do have now medical validation that I am truly ill but it still isn't enough for this critical, self absorbed family who have forgotten or never knew that the road to grandma's house and heart goes two ways.

We are so graced right now to have medical support to help us bumble along with finding health but they and I know it may be too late. Too many years of medical neglect and outright misdiagnosis and the use of the wrong drugs have left permanent injury for me. There may be still hope for my husband since his diagnosis is fairly recent but his impairment seems even harsher than my own. I can't even describe the depth of grief I feel to see what the illness has robbed from him. It is gut wrenching and heartbreaking.

It's a relief finally to not need my family to validate my experience but the injury left behind from years of failure to act as a support system will be hard healed. I have so little expectation for their depth of character. How else could it be when my own dad calls me a chicken shit and then refuses to apologize? It seems a bad omen and my mom isn't alive anymore to insist he make amends.

I have progressed into the crazy, oddball and rarely seen grandma role. You know - the one with the pink stripe in her hair, who marches her chubby self right into the ocean in a two piece suit, who sings out loud at any given moment and the one with the penchant for finding cool and unique tshirts at the thrift stores? She is me. I am her.

I'm the one who has just a bit to give and it will never be enough or equitable. Our only hope is acceptance and I've little hope for that. It is unlikely we will get close relationships with the magical grand kids and this is such a point of pain but I will not have them used as ways to reward or punish me for my participation which is ALWAYS affected by the limitations of my illness and NEVER equitable. 

In the meantime, because we lack family support to do it for us, we are making arrangements for live in help because  we can't take care of ourselves alone anymore. We are starting to get help with meals and transportation but its been tough because we fall in the gap of being just a bit too young and making a little too much money. 

I am allowed to work still if I feel well enough but it has been over 5 years since I felt well enough to work. I am not sure it will ever come back.

I miss my family and the mountains with a deep and unrelenting pain but my lungs and psyche need clean ocean air around contemporary and advanced medical support. I'm not sure i will ever understand the ease with which these people in my tribe cast hurtful opinions and cast off any sense of obligation. I haven't decided if its a family illness or a cultural illness. Either way it has been devastatingly destructive. 

I am graced to have one sister who is my undying ally and advocate. She was that even prior to knowing the whole story but after a recent crisis intervention meeting she shook her head and just said 'Wow, I just had no idea how complex the issues you're dealing with are'. I had asked my husband's  brother  too because I wanted for him the same kind of advocacy that I have. I'm not sure it's there or sustainable but either way it meant the world that these two came to help us out of our crisis.

There is an army of us previously voiceless sufferers of ME/CFIDS who now with portable technology are rising somewhat metaphorically from our beds and demanding acknowledgement. And treatment and validation. With between 4 and 10 million in just the US the potential for revolutionary change is on the horizon. I hope it comes in time for me and if not at least for my husband and niece. At that leaping off point.

To Walt, Bree, Glenna and all of you warriors - this post is dedicated to you. And to my Sisterla Sherone - you rock.

Peace be with you and all that jazz....

PS. Don't forget to sign up and follow Jenn Brea who is making a documentary about ME called. 'Canary In A Coal Mine'. 


  1. Hi Mom.
    I thought about just writing you an email but since this is your blog and you wrote this stuff about your family for your readers to see, I felt it was appropriate to respond here…

    I won’t speak for anyone else but I and I’ll take responsibility for things mentioned in your post that I said to you. Your grandkids, specifically the grandkid that is snuggled up in his Spiderman sheets right now does, 100%, deserve you in his life. He deserves some g-ma back tickling and story time because you are best at both. My comment to you regarding this specific issue was said in anger, and I did apologize to you after but obviously it’s still hurting you now. So I’ll clarify in a way that hopefully makes sense to you and your readers and may shed a different kind of light on the subject.
    My mom, Chardale, got sick when I was 14 years old. What she said in this post about her being young, vivacious, athletic and beautiful are absolutely true…. and then she got sick. To the 14 year old me, it wasn’t a gradual event. My mom got sick one day and then didn’t get out of bed for a year. I don’t know how accurate I am on the time line with that but that’s how I remember it. To my 14 year old self it was confusing, scary and unstable. Watching my mom turn into someone, something, I didn’t recognize... And then she left. The story I tell myself about why she left is that she was sick; she needed to be where she could be taken care of and obviously her now 15 year old daughter and two sons couldn’t do that for her. She left to help herself, but I think she also left to help us, to not put us through what she was going through. Maybe that was the best decision for her, what she thought was right, but for me, I of course wanted my mom to stay.

  2. Over the years she better, then sick again, then better. It’s been an emotional, physical and psychological rollercoaster for her; it has been an emotional, physical, and psychological rollercoaster for her family as well. Speaking only for me, the rollercoaster has caused many scars, many calluses, but also the amazing ability to enjoy the ups and endure the downs.
    When she moved back, every now and then Mom could get off the rollercoaster with me; we could pretend we were normal. For a while I felt we were off the rollercoaster for good. After I had my son she would come to the gym with me and walk the track. We would drive around in her Prius trying to get my son to sleep (by the way, Prius’s are the worst and getting babies to fall asleep), her and Walt would come over for dinner or we’d go to the movies. I thought “she was back! My mom was back!”
    And then she left again. Under different circumstances this time, happy circumstances, get out and travel, see some cool shit, take the world by storm circumstances. At least that’s what I felt about her taking off in that RV. It reminded me of how she was before she got sick…
    Then mom got back on the rollercoaster, I got back on the rollercoaster, the family got back on the rollercoaster and none of us want to be here, especially Mom, but here we are, everyone scrambling to find a better seat to endure the down this time. Mom needs the support of her family and this family member is trying to find a way to not collect more scars from the ride. Maybe that’s a selfish want, an ungrateful way to think, but that’s me being honest. My attempts to express this to my mom have not been heard in the intended way.
    I asked to talk about other things besides her medical problems because I no longer have the proper responses. A normal person would respond with compassion and concern and I feel like my responses lack both those qualities because of years of overuse. I can however talk about the garden, the thrift store, the amazing beach, and the dumb things Walt says to her, the cat, space and cruise ships. Those things may not matter as much to my mom, they may not be what are at the front of her mind every day, but they are important to me, I like hearing about what makes her happy, what makes her laugh, even if they are few and far between these days.
    In a perfect world I’d want my mom healthy, happy and living in Colorado so I could see her, so my son could get those g-ma back tickles and bed time stories he so deserves. I like to think that’s what my mom wants too. But it’s not perfect and we don’t get what we want, so we have to keep trying to find ways to connect (those are my mom’s words), and ways to support each other that are healthy for everyone.