Alliance For Cryoglobulinemia

Alliance For Cryoglobulinemia
You Are RARE But NOT Alone

About Me

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My Maddening Maze began suddenly, when I was just 47, with a plethora of autoimmune diseases. The life I knew changed forever due to chronic debilitating fatigue and pain. Faced with challenges beyond my understanding I began a never ending search for answers. I was later diagnosed in 2010 with a Rare Disease, Cryoglobulinemia Vasculitis. This disease causes my blood to gel in what appears to be temperatures lower than 70 degrees. When this phenomenon happens it can be life threatening causing organ damage, stroke, eye and vision loss along with a host of other complications. Both my kidneys and heart have been attacked by this uninvited guest and each day brings new challenges both physically and mentally. I live to find answers for myself and others that are afflicted with this rare disease and to find joy in living, whatever the cost. My passion and purpose is sharing the voice of the patient lost in the Maze and offering the face of Wellness in spite of it all.

Monday, December 10, 2012

Today I'm grateful for Pharmaphorum

Do you find blessings in each day? Do you notice the windows and doors that constantly open allowing you the view of new possibilities and do you see the people that cross your path offering you exactly what you need at the moment?

I am blessed to have new eyes to see this awareness due to my many years of illness.  Yes, it is a gift that we all receive when adversity crosses our path of desires, passions and commitments. Clarity becomes the force and focus of survival mode. Within that clarity is a pathway that leads us exactly where we are meant to be.  This reality does not negate what I deal with on any given day: extreme highs and low, uncertainty of treatments options and the fear of not seeing tomorrow’s sun. It has been an arduous journey as a patient living with a rare disease but within the darkness, the light of family, friends, caring strangers and healthcare advocates renew my spirit each day.

For example, on one particular day, when I was crashing below my comfort zone, I received a tweet from @rebecca_aris from pharmaphorum wanting to know if I would be interested in doing an interview.  Not knowing who she was or what we were going to discuss I opened the door, walked in and here is what we said.

I’m grateful for the opportunity to share my story for other rare disease patients and communities. I’m grateful for the network of strangers that allow me to weave my web within social media bringing awareness to the unmet needs of so many people. I am extremely grateful if you will share my story for us.

Thank you pharmaphorum for your work in "Bringing Healthcare Together"

LaughingNana is Grateful for Each Day.

Tuesday, October 23, 2012

SANFORD CoRDS - Chat With Us Oct. 26th Noon CST

Liz and Natalie from CoRDS met with me a week or so ago to discuss what I would like to share about myself and the Alliance for Cryoglobulinemia on their next Tweet Chat as their guest.  After a quick half hour I realized that I didn't want the focus to be all on me. Our Rare Disease communities need support from one another, and questions answered about where to go next. I envision my voice as a voice for all our communities since each is so small in numbers but we need your voice as well.   Collectively we are larger than the patients of AIDS and HIV put together.  That's allot of people living in isolation without answers on this sometimes lonely road to a treatment, a friendship, a community.  

CoRDS is hosting our Tweet chat October 26th, Noon CST, to talk about our obstacles and challenges, our progress, and our accomplishments that we face everyday on our journey. 

Please join Natalie, from CoRDS, myself and others from our Rare Disease communities in hopes to create a united force to raise awareness for us the patients, advocates and communiites.

If you've never joined before, just go to and add the hashtag #CoRDSChat.  It's easy to follow along and Natalie will give you directions on how to RT, pause and add comments. It's just like twitter so share, share, share. Be sure to follow @SanfordCords on twitter.

Please feel free to email me at if you need any help with the Tweet Chat set up.  Arrive 5 minutes early on to sign in.

    See you there.  Marianne-Laughingnana Cares - I Care Because I'm Rare 

    Wednesday, September 26, 2012

    Departure for Stanford Medicine X

    Anticipation and fear fuel me as I hear the engines roar and I feel the plane in motion.  So long I have hovered in my quiet, small world, nourished by my family, close friends, healthcare providers and internet friends.

    Leaving my safe place after three years is exciting and frightening, as I venture into a new place leaving my cocoon of protection, my home. I realize how safe I feel in my little hut of protection after this three year journey of the unknown, living with a Rare Diseases.

    Who will care for me in a new location in California?  Will the doctors understand my needs if my health fails me? There are so many what ifs I face that no one understands. 

    Because Stanford Medicine X said yes to my application as an e-Patient scholar I am traveling across the country from coast to coast.  I’ve had so many obstacles to overcome beginning with my own health along with my dad’s health.  Building a presence on social media is time consuming yet essential as I search for answers to why I am so sick along with my patient community. 

    I am here.  I am taking off the ground and venturing into a new chapter.  Hope tells me miracles happen and remission can be forever.  Fear says, OMG what if your legs swell and you can’t walk, your fatigue is so bad you can’t think when you arrive at this medical conference?

    Reality says,  I can handle whatever comes my way because I have a husband that will do anything for me, a family that won’t allow me to feel sorry for myself and God to give me the wisdom and  gifts needed to be all I am meant to be. 

    Saturday, September 22, 2012

    It's Scary when I feel well - Moving on!

    False Hope is what I experience right after my chemotherapy treatments.  My energy comes back, the dark black circles under my eyes become bright, I can think clearly, walk with confidence, think about tomorrow and begin to dream about the possibility of regaining a normal life again, whatever what means. Prior to the last 14 years, when my health first declined, I truly loved my profession as a nutrition counselor, personnel trainer, and fitness advisor.  That chapter of my life prepared me for what is, a body that has failed the norm no matter how healthy I was. I know how to stay strong within the confines of my home and eat for health not for pleasure because of my prior life.  I am fortunate to have these tools to survive the life of chronic illness.  I worry about all those that aren’t as fortunate as me. When I feel as well as I do today I realize that getting on the plane taking me to San Diego and then Palo Alto for Stanford Medicine X conference is a reality.   I’m so excited to go and participate and learn whatever I can for the rare disease community, but I will bring my cane just in case I start to decline. I will bring my medications just in case I start to flare.  A flare may mean that my legs and feet swell up so much that I can’t walk.  I imagine Stanford will provide wheelchairs, just in case.  It may mean that I will have to sleep up to 13 hours before I can get out of bed for the next conference day.  There is a possibility that I may not be able to concentrate on anything anyone is saying, so I’ll just be present and let life happen as it should. I completed my last chemotherapy treatment just two months ago.   In 6 weeks this very strange protein begins to re-produce itself in my bone marrow and then all hell brakes loose.  No one has me able to explain to me why this happens. Maybe I can beat it this time but in reality I have to be that it is a very strong possibility that my health will decline again and I will be in that place where fear sets in. Why am I fearful? Because, no one understands what my body is doing and how to STOP it. Kind of scary isn’t it?  I’m scared because I experienced a brief moment in time when life feels normal and I don’t want to let it go.  I just don’t want to be a sick person again. The worst part about having a chronic illness for me is fatigue.  I can deal with allot of pain but when fatigue sets in, life STOPS.  I’m a triple a personality but there are days that nothing, not even my grandkids smiling faces pull me out of that frightening place where my body just won’t move.  Of course I never let anyone see me that way.  That’s when I hide. People usually say, “Hey Mare, you look pretty good today”.   That’s because most people never see me when I am the hurting child, the person that just can’t participate in life.  So today I am well and strong and I’m making plans and hoping and praying that maybe it might not happen again.  Maybe the invader will disappear and never come back. What will I do with all that wellness?  How will I handle it, all over again, if or when it returns?

    Looks like I lost my paragraphs? Oh well!     

    Friday, September 7, 2012

    Stanford Medicine X - Getting Ready

    Dedicated to my Dad

    How long has it been since I’ve visited my blog?  When I finally opened my last post that said, “under construction”, I realized it has been 7 weeks. I had so many plans for my new life as a health advocate and yet life keeps getting in the way.  Or, am I getting in the way of life?  I’ve always been very goal oriented, never missed a deadline, and have accomplished in most cases exactly what I have set out to do, unless of course my health got in the way. 

    My dad has been very ill since July 24th so I dropped everything in my path to care for him. Who wouldn't do that for their dad? This is a man who put himself on kidney dialysis, at the age of 88 yrs, old because he lives an active life. Kudos to dad! I'm so proud of his choice to live. 

    Two months prior, I let my work stagger because of my own health problems.  I have been working so hard to prepare myself for Stanford Medicine X. 

    What is Medicine-X?
    Several months ago my twitter mentors suggested that I consider applying for a scholarship as an e-Patient Scholar to Stanford Medicine X, in California.  It sounded both exciting and interesting but I really had no idea what it was all about. At the time I was like a sponge soaking up everything and anything I could to learn about empowered patients and how to advocate for my rare disease, Cryoglobulinemia.  I followed through with the application and to my surprise I qualified and was accepted.  This was an honor for a newbie e-Patient and a responsibility I took very seriously.  I was now motivated to work even harder to learn all that I could about healthcare social media, global rare disease networks, my disease and anything else that would empower me to be the best e-Patient I could.  Everyday was a new adventure as I traveled through this new world that was opening up before my eyes.  Many times I felt less than adequate like a new college student who never finish high school. I was learning a new language, meeting new people in an industry I had never venture into before.  But I was in love with learning and sharing all that I discovered to help my community. It is overwhelming yet exhilarating.

    So I have to ask myself, since my plans haven’t gone exactly as I had anticipated leading up to Medicine X, should I still go?  Am I still qualified? I have not accomplished all that I have set out to do by the end of September for the conference.   My website isn’t up for my rare disease.  My blog has fallen through the cracks. I didn’t start my fundraiser and haven’t been able to keep up with my twitter contacts and friends.  No, things haven’t gone as planned but I still am an empowered patient seeking answers not only for myself but also for all rare communities. What I have learned are life lessons on this detour.

    For me, life is about exploring new territory, knocking down roadblocks, adjusting to change, accepting each day as it presents itself with gratitude and reverence and being true to the person I am.

    Laughingnana Cares about her Dad

    Friday, July 20, 2012

    Patient Advocacy and living with chronic health issues.

    Have you noticed that my blog still hasn't made any new construction changes again? Imagine life without making plans that you can stick to. Imagine it on a daily, weekly, monthly and yearly timeline. It's frustrating. That's what it's been like for me for the past 14 years of my life and for the many people that live with unpredictable diseases. I'm not complaining or looking for sympathy just simply stating a fact that causes us nerve racking frustration and emotional roller coaster rides. Oh well, tomorrow's another day.

    Two months of health hell has blurred my focus.  It's challenging to accept the plethora of symptoms, tests and treatment options that is my reality.  Cryoglobulinemia has come back in force and driven me into survival mode.  Cryo first appeared in October 2009 and here I am July 2012 starting the whole process again.  I sometimes lose hope when I think about the unknown that is before me. Rare diseases generally have no standard approved treatment protocol.  It feels like a guessing game!  Sadly, my guess is that it is going to be another tough road.  I really don’t want to travel down that road again but … I do know I that in spite of my fears I have clearer vision this time around because I’ve visited this road before.  It is not the foreign road it used to be!

    So how do you find clarity when life becomes more complicated? For me it is part of the process.  I try to accept the possibilities that who I am and what I am experiencing is exactly how it should be. My yogi brain can sit with this positive form of healing information but not when I’m a complete basket case!  The process when dealing with life threatening diseases is one that involves a regular mourning process. These are my thoughts as a trudge through the rocky road praying that the open highway is around the bend.

    • Accepting that the invader visiting my body is not a beast; it is simply a foreigner.
    • Letting go of the realization that any plans for the near future may not come to completion in my time frame, if at all.
    • Awareness that each day I live is going to be a full time job to mentally survive.
    • Physical survival means paying attention to mindful body scans, staying strong without infringing on the loss of energy, deciding do I or don’t I push through debilitating fatigue, mental fog, and pain.
    • Finding balance between false hope, hope and reality.

    Wouldn’t it be lovely if my blog was as perfect as I envisioned, I were delivering all the information I acquire and sharing it via Social Media.  If I could fulfil my diary of thoughts everyday.  I hope for this not only for myself but for those who are on their own personal journeys. Wouldn’t it be lovely if I could power through my obstacles as a rare disease patient, an advocate and just get the job done. But, I can clearly see that this too is a process.  I must be accepting that these stops along the road open me up to important lessons.  

    • I get to slow down and stop being a Cryo champion and just be content with what is exactly before my eyes.  
    • I must refocus and recognize my purpose as this woman with a strange and rare disease who doesn’t have to fulfill my old self vision: my persona of superwoman.  
    • It’s a lesson in letting go of dreams that may never happen and places I most likely will never visit.  
    • I am continually trying to shed my ‘false’ layers.  I must get rid of layers I no longer need and face the layer that is before me each and every day and being OK with what I’ve been given.

    I am learning through this process that I must give myself credit because I am courageous on most days. I’m learning how to be compassionate with myself and with others.  I’m letting go of who I think I should be before my peers.  I am trying to become truly genuine on this not so new journey.  But, I feel most importantly I am finally embracing my vulnerability.

    Life is tough but you have to hear the music in the background to stay in the game. This weekend I'm listening to my husbands old rock and roll band of 39 years ago, in my garage. Now if that doesn't take my mind off my stuff what will?

    laughingNana-I CARE because I'm Rare