Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Friday, April 2, 2010

Welcome to Redefining Myself!

“Empowerment is the result of external sources inspiring us inwardly."
©Kim Nault

This blog is still under construction! I am so glad that you have stopped by for a visit!I'm CNS challenged, but not dead! I'm still facing severe inflammation in my CNS and brain. I am not stabilized YET! I am hoping that Cellcept will cool things off and maybe even bring remission! My objective is effective time management for the chronically ill. Though I fall short of that most days, I wipe my butt off, roll my sleeves up and keep moving even if at ataxic and snails pace. Keep the Light Going!

August 9, 2010
Piss Off Lupus! Lupus has pissed me off so much that I decided to write about it! Lupus has pissed me off so much that I've gained new friends through it! Lupus has pissed me off so much that I fight for every day because of it!

Ha! Ha! I bet Lupus never saw this one coming! Scores of lupus patients banding together offering support and encouragement to one another! Lupus may mess our bodies and lives up, but it never knew so many of us would unite!

Just in the last few days I have had a few dozen people tell me how grateful they are for the Internet world. I think that anything that empowers people to do positive things with their lives is a great tool! The positive side of the Internet is that many people are joining forces and combating the SOB who tries to hold us down!

So, now I have to tell you about my editor at The Lupus Magazine. I have a running joke that he is my whip cracking editor! This is for shock value sake, of course. He is one fine gentleman who has dedicated most of his spare time to all things lupus awareness! Big kudos to Geoff. I even gave him one of my Epic Shit awards the other day!

Well my editor is behind the magazine scenes busy at work. He has compiled several press releases about his magazine and its writers. Check out the very cool press release Geoff wrote on my behalf :

Kim's Press Release

Thanks Geoff for your kind words! It's good to know that each time I pick up my arthritis gel pen or sit in front of my keyboard that I am whacking the very disease that is trying to snuff my ass.

Okay, on a different note...
Have you ever heard Crazy Horses' famous quote? "Today is a good day to die!" This was his battle cry, he wasn't afraid of many things. Well, then my adopted (Aho! Aho! Welcome!)) Ojibwa father, Darrell Michael Fairbanks or Good Ole Darrell (GOD for short, which is delicious NDN humor at its best! So, please don't send me any emails about sacrilege, or I'll send you emails about racism....) , who recently took the journey to the spirit world (over the Bridge of Souls along the blueberry path, not strawberry...), used to say, "Today is a good day to die, but it is also a good day to live!" I'm in absolute agreement with my Pops. He also used to say that it was a gift to be a human being. Twenty years ago that would baffle me and piss me off! Today I agree! I'm a slow learner...

Thanks (Miigwiich!!) Pops, today is a good day to die, but it is the first day of the rest of my life and I will try to use it well and live it well. Right now, Pops I'm trying to fight this cotton picking CNS battle. I know your with me, please pray for me to have humor, mostly at this situation, OK? Oh, and watch over my stupid sister Heathen, who I do love but pisses me off, almost as bad a lupus. I'll keep trying to redefine myself, a little more each day...

August 7, 2010
Announcing the
"Doing Epic Shit While Living with Lupus" award!

Do you know of an exceptional patient who goes above and beyond the call of daily duty?! Have you seen these people? They have their own personal battles with health problems and life situations and they still reach out to others? I am blessed to know dozens of phenomenal people like this! Each need to be acknowledged for their contributions in Lupus grassroots advocacy! All of you absolutely ROCK and make our world a better place!

I don't know about you, but I can use all the hope that I can get. Have any of you ever had a bad day or week, or month, where your body is in a wicked predicament, life is buzzing around you, you can't move too well and you’re depressed? Then you get online or make a phone call to a lupus or MS friend, and within minutes you are feeling confirmed and inspired by that other person? Isn't that awesome! I have said this before, and I cannot emphasis it enough that my connections and relationships with other patients is just as important as the medication that I take!

Have you ever experienced an inner gratitude for these people in your life that you feel like you could just burst and over flow with love and a deep sense of community and belonging?! That gratitude comes to me daily, and it makes my life feel like a gift.

Today, I awarded the premier award to Kathy Patterson of www.LupusMCTD.com. This woman has had a direct impact on my life and emotional well-being! I met her through a service position on her website. She taught me many things about the internet, computers, and internet service work and in the process became friends and family of choice! She has walked through many painful experiences in life and has redefined herself through each experience AND! In turn continues to reach her hand out to others for support and encouragement! Isn't that awesome?!

Kathy walked through 30 years of her life before being diagnosed! She started having grandmal seizures in her late teens, compounded by more baffling and insidious health problems that were blamed on stress, bacteria and other things (maybe even lipstick, right, Tyler?!). Three decades later, a blood test came back confirming that she had Lupus. Finally, she had a name for what she had been plagued with for thirty years. She did not want to see another person suffer the way she did for so long and in turn she created a website for patients and people seeking information and support.
She is still active in the global lupus community today, counseling others, educating, and raising hell with others.
Earlier this year, Kathy left her husband (high school sweet heart) of 30 + years because of domestic abuse. To have lupus and live under the tyranny and the psychological terrorism and physical abuse was an impossible place for her to stay. She made the decision to get out.

She is a great example of redefining myself! She is one courageous and compassionate woman, and I am honored that she is in my life. I know that my little corner of the world is a much better place because she is in it. Thanks for your global contributions, Kathy!

If any of you know of an epic lupus or MS warrior, and would like me to send them the epic shit award, please email me a brief bio about their grassroots efforts and their blog link, Facebook page, or other patient based forum at: redefiningmyself@aol.com In the subject line please put Epic Shit award

August 2, 2010

Isn't it truly amazing
that as patients with chronic illnesses we have periods of weariness and depression from not feeling well? So many times I have felt overwhelmed with my health problems and trying to live a quality life, and then another patient will say something that grabs me from the inside out and shakes out the cobwebs of hopelessness!

A few simple words will set me free. It can come from a quote, a personal story, a sentence, a song or a movie. These life messages can randomly show up at any given time, through all sorts of instruments. The God of my understanding works through people, places and things.

Yet, the most powerful influences always comes from the very candor of another person. That level of honesty shared by another person liberates me, sets me free and makes me not feel alone. I cannot even fathom the not too long ago past, where the Internet, and patients forums and websites did not exist. I've often wondered how did people back then make it without a community of peer support?

I do not think that I could survive life without the comradery of other patients. Certainly, my family and closet friends are tremendous sources of love and support, but they cannot relate with empathy. I cannot tell you how many times my loved ones eyeballs have almost rolled into the back of their heads when listening to the litany of my ongoing health issue's. I believe that God has provided all of us with this Internet world of peer groups for two reasons: 1.) To provide us a community of understanding, hope and support, 2.) To prevent our loved ones from going into mental overload!
Keep the Light Going, Kim

July 27, 2010
UCSF appointment went great! Dr. Cree ROCKS! Holy Mother of God, I've been vindicated! To quote my Rheumy, "Kim you are a zebra. When we hear the galloping of hooves, we expect a horse, not a zebra."

Your steadfast bitch grrrl's body has seemed to pull things off overlap style once again! Dr. Cree is brilliant and thorough. This appointment was perfect timing and I am grateful to God for it! Yes, I will become one of his regular patients!!! :)

(insert happy dance here)
It seems as though it is possible to have concurrent MS and SLE, BOTH attacking a persons CNS. He said this is rare but it does happen. He said that I have a lot of overlapping. I said, "Yes, sir, that's me, an overlap girl." ;)

Based on the amount of inflammation in my spinal fluid (which my regular neuro never mentioned....) Dr. Cree believes the root of my CNS problems is SYSTEMIC, and needing to be treated as such. This is why I have always responded to steroids so well.

He also said that sacrcoidosis can manifest in the CNS too, and will run some blood work on me for that to rule in/out. He said that families with AI disease cluster and based on my family tree, that he is not surprised that I have tested + for MS, even though there is (thus far) nobody else in my family with it.

He said that people like me do not respond to the MS interferons meds because it mediates and initiates T2 cell production and creates antigen production, which is like an auto-antibody domino effect~ which makes things flare, and makes things worse! Yikes! Lupus does not get along with interferon medications.

The fine doctor says that most likely I have Lupoid-Sclerosis. Which is lay terms means I have both Lupus and Multiple Sclerosis pounding the daylights out of my central nervous system. That both diseases have planted both MS and SLE "white marshmallows" (a sick humor term for white matter lesions; that I'm stealing from my Aussie Lupie Mate, Annie T.) on my brain. He said that my presentation is so overlapped, not fully MS but very much CNS SLE.

He wants me to undergo a bunch of other tests: EMG (I know, Kathy, please don't say it!!!) MRI of my spine, evoked potentials, and some type of a scan to look deep within my eyes, looking for evidence of damage to the optic nerves, blood work. He wants to investigate things thoroughly for MS damage.

He wants to treat me with either Cellcept or rituxan. He wants to work with my Rheumy. He wants me in intense PT, and seems to think that I may be able to gain some of what I've lost back!

I cannot help but think back to Dec of last year, minutes before my lumbar puncture and me asking my first neurologist Dr. Yak Milk (as my daughter and I call him) if he was going to test me for CNS lupus antibodies, and he said,"No. Only MS. " This diagnosis from UCSF will be a mighty good lesson in humble pie for Dr. Yak Milk who has neglected to take into consideration my medical history. Two months ago the inapt Dr. Yak Milk asked me why I saw a rheumatologist. I was PIST off and said, "Why don't you open my file and see why I see a rheumatologist." He wanted so very badly to peak in those papers, his finger was flicking the edges of my file papers, instead he played possum! I know he ran to look in that file after I left! LOL

I have already explained to my kick ass PCP, Dr. Patricia Samuelson, that I have ZERO confidence in Dr. Yak Milk. I'm just glad I didn't suffer almost near organ failure behind this ones inapt shit. I would love to be a fly on the wall looking at Dr. Yak Milk while he reads the recommendations from UCSF. 'Effin glorious!! FSU!
A grateful overlap grrrl, Kim
July 21, 2010
This patient blog is committed to fostering education, empowerment and inspiration to others living with chronic illnesses. As long as we're still sucking air there's always some hope, even if it is hidden from plain sight. It is my hope of this blog to bridge the gap of frustrations and hopelessness that patients often feel while living with this illness. Living with a chronic health condition can be frustrating and baffling to both the patient and their loved ones. There are days when the patient feels well and days when they do not feel well. Seemingly, family members and loved ones often misunderstand the complexity of how a person living with a chronic illness can feel so different from day to day. It is my hope to fill in some of those gaps of misunderstanding and create some new tools of understanding and compassion for those who love someone with a chronic illness.

April 4, 2010
The last eight months of my life has taken all sorts of twists and turns, preventing me from attaining some of my goals as an advocate in the Internet world. Last autumn, I was going to create a resourceful website for SLE patients, but my health prohibited me from accomplishing this. This blog is my current ability and effort to help others. Eventually, I will produce that ideal site, but for now this blog will have to suffice as part of my contribution in service work to the SLE and MS patient populations.

I will do my utmost to not post regurgitated information on SLE and MS on this blog. I am dedicated to providing patients with innovative information with the goal to improve the quality and well-being of people’s lives.

Currently, I am at home recovering from a second MS hospitalization in two months. My Christmas 2009 MS diagnosis has been revised from Relapsing Remitting to Progressive Relapsing as a direct result of last weeks hospitalization. I’m still on the mend, still flaring, still on steroids, and have incurred a new set of physical impairments. My ability to stand and walk has dramatically declined. My upper body coordination is clumsy and unbalanced at best. The verdict of the doctors overseeing my care in the hospital is that I need to consider a more aggressive therapy, one of which may be chemo. I have some serious decisions to make over the next few weeks.
Yet, I am still here! I still chip away daily, being a single mother, a daughter, a friend, a person living with chronic incurable diseases, and always eager to lend my hand to fellow sufferers.

I have come into awareness that all those years of me being undiagnosed and untreated were never in vain or without purpose. My very own experiences in living a life with an “unnamed” illness and then the later named illness, can bring comfort to another person. Three years ago, I connected with other SLE patients through the Internet and within a short time; I dedicated myself to helping others. Over the years, I have had the privilege of meeting hundreds of other patients globally. The moving experiences through connecting with others have been the fundamental root of why I continue with my service work.

Through advocacy work, I have gained a handful of close friends, who are pillars of strength in my life. They have held me up when I have not had the inner strength to do so. Lupus brought them into my life and the fellowship that we share has a depth and weight, which unifies us in the spirit of hope.

I am a grassroots advocate. I prefer and require direct human contact. Experience shows me that my efforts and contributions are more effective through human contact. Every person deserves an ear that will listen and a heart that will give. Living with chronic illness does force the patient to reassess their way of life, and such reassessment cannot be a solitary self-appraisal. To confirm the plight of another patient has such depth and weight and is significant and purposeful. It is indeed a moving experience!

To those patients on MySpace or Facebook, or other SLE and MS Internet forums, your presence does help others! Your voices are more influential and powerful than the groups competing for the cure of our illnesses. An advocate does not have to be sitting behind a nonprofit office desk; we can effect positive change right from our computer, in our PJ’s while at home. Let us keep the objective of liberating the hearts and minds of people affected by SLE and MS, and leave the technical cellular work to the scientists.
Yours in Service,Kim Nault

April 2, 2010
This blog page is a part of my commitment to educating, encouraging and empowering others who are living with these chronic illnesses, of which there is no cure. The entries that you will find here will be from my personal experience, some hilarious, some bitching, but always packing a punch of witty determination. The Internet is revealing itself to be a powerful tool in people's lives. Networking with other patients has become a bright spot in my life and does add to my state of well-being ~ along with all the medications that I take. Living with an invisible illness sucks, but living with an undiagnosed and untreated illness, really sucks.
Keep fighting, Kim

March 30, 2010
Hope is an inside job… The steps taken to gain and maintain the state of hopefulness is perhaps at times more painstaking than the exertion and discipline that it takes to train and prepare for a major sporting competition. Hope is not an emotion. Hope is sprung from the very opposite of which it is.

Hope is a state of mind and being, that even small voice, from within, that says, “Tomorrow will be better. Things will work out. Keep moving forward.” Hope is a direct result of determination and perseverance. Hope is a gift of the human spirit. Hope gives birth to a new idea, opens doors and has the very power to influence minds and change lives.
© Kim Nault 09/30/09

You are welcome to quote my work or take an excerpt for publication elsewhere, with mentioning the original source and link. I know that some of you are not intelligent enough to compose your own material and you might snag some of my shit. You have no idea what these white marshmallows on my brain have done to me cognitively or to what degree I struggle to compose my thoughts in written form. Please give credit where credit is due. This blog is to help other patients and to leave my footprint on Earth. Copy cats will be publicly flogged.

Page last modified on February 06, 2011