December 8th, 2010 by annemarie
Hi Ya’ll. It’s been a minute. Current Emotional weather: partly sunny with patches of upset, chance of tears with occasional high winds of frustration. Bad hands are causing a stormy and rocky foundation in my mental state via the absence of journaling~GOD I miss that release. And yet I remain…without my most basic tools for self/mental management… I am in a fairly decent place despite grasping to recall a turn of phrase for later use rather than letting go and flowing with the words as now even i cannot read what I have written.
The last 6 weeks have been a revelation, after they were a monumental setback. Soon after going all tube feeding all the time, I lost about 70% of my CAPACITY to do. literally.
November 26th, 2010 by annemarie
So I’ve been lost in a forest of food supplements, meal substitutes and liquid vitamins and minerals…thinking I had done plenty of research on liquid foods etc…but what I didn’t get was other people’s experience with tube food and how to apply it in a healthy responsible manner. Frankly, I am one impatient bitch about it. Incensed that I have to interrupt my day for 45 mins per feeding, I have been rushing them, regularly and then wondering why I get light headed after …and why my energy lags…There oughta be a manual ya know? Thankfully, my friend Kelly, an experienced iron woman competitor, saw that from my last post.
I am convinced that I’m just not asking the right questions to be able to manage my nutrition via the pegtube. I have invited my friend Catherine who is a nurse to be my advocate at my next Dr’s review at the ALS clinic. I wasn’t told to expect a huge dip in energy or focus as I transitioned to all liquid foods but mother of all that’s holy~ that’s what’s happening. I don’t know why I’m just continually annoyed that this happens, I guess I think people should tell you what to expect…is that too much? Is that so wrong?
I have avoided the iso-cal originally perscribed to me as it’s full of high-fructose corn syrup and a stunning selection of chemical additives WHICH made me nausseous as all getout just so you know. However I’ve replaced that with a variety of natural and man made nutritional drinks, from coconut water and fresh juiced veggies to high protien and perfomance nutritional aids as well as liquid supplements for minerals, vitamins etc. Whatever my super combo mumbo jumbo has done it hasn’t been effective in minimizing the impact of living on the tube… I just hadn’t expected this to be the thing that made me home bound. I’m not quite yet, but definitly side lined by long feedings…it’s an effect I tried to minimize by “feeding” as quickly as I can. But as I said, this only made me light headed and occassionaly nausseous and often weak.
I keep waiting for this experience to self correct. For my energy to return so I can engage in an activity for more than 45mins-1hr. before I need a nap. I have new food coming Monday, we’ll see if that makes a dent. If not the conversations we have here will have a decidedly different tone…but we can cross that bridge when it comes. For now I am thankful to have found a guide.
November 15th, 2010 by annemarie
Ok so HOW in the world does one go about feeling nourished with peg tube feeding? Is there normally a marked drop in strength and endurance? Is it odd to get light headed during or after feedings? Why isn’t there a booklet to tell you about it? Is naussea common? especially with higher carb “foods”? I feel like I’ve entered a new dimension~ the dimension of the wobbly and weak.
It takes a tremendous amount of energy to do the simplest tasks! AND I have to pee every 20 mins it seems…not always but for a good 1.5 hrs after a feeding for sure! I am open for suggestions and looking for answers…as I ramp up for friday’s speech, I am more grateful for my faith and positive mental and emotional practices than ever…it keeps me hanging on…there’s got to got to got to be a better way.
November 14th, 2010 by annemarie
What is it really that determines if we experience being alive? What elements have to be there? What’s non- negotiable and does that change? You bet your skivies it does!
Just in the 6 weeks or so that I began taking notes on this question my own non-negotiables have changed. I was originally looking at how many activities can you loose and still feel like you are living? Then I got REALLY tired, and my breathing became more shallow. Things took longer, alot longer. I began minimizing my movements, avoiding trips out of my home, meetings were held here etc. My world is shrinking, my ability to type is slowing down…I haven’t yet gotten to 1/2 the wellness things I’d like and now fear I wouldn’t live through them~ ie. having all my amalgam fillings removed etc.
I need support breathing and am going for a pacemaker for the diaphram if I can, hopefully I won’t be too late to be effective. The thing with ALS is you don’t need something til you NEED IT. I think I’ve been lulled into a sense of complacency given the relatively slow progression of my disease. So what began as an inquiry about what it takes to feel fully alive is now quite frankly a real time look at what do I say it takes to keep me in the fight. What must life provide such that it is worth participating in…? This is a more macabre twist than I was searching for!
Now, I fully believe you bring to life what you make it, and this was meant to be an articulation of that thinking…more along the lines of “if you cant eat dinner out how can you participate and still be a part of it”, but now I don’t have the energy to care. Whoa. There I said it.
That’s a state change people. So I’m alive. Not quite satisfied with how that looks right now, but I’m alive.
November 3rd, 2010 by annemarie
It used to be that I could take 2-3 days off in a row and emerge well rested. Mostly by allowing myself to rest as appropriate, bask in some silence, boost my mood with some empowering reading, meditation and reflection. Basic conscious nourishment. By day 1.5-2 I could feel a sense of renewal and rejuvenation begin to well up, especially when I limitted noise and TV. I’d emerge from my 3 days FULL, energized, with ideas to spare.
I struggle with energy alot since I’ve switched to peg tube feedings, and I’m trying to find liquid supplements that support the highest operation of my cells. I mean what will it take? Do I have unrealistic expectations? I just don’t think I should feel like shit more often than not. Is that too much to ask? I rarely have caffiene- unless I get a headache in which case a few sips of coffee does wonders!! (So does liquid Children’s tylenol in my morning Myoplex!-42g’s of protien- woo hoo!) I’ve just completed 2 wks of tea from a local Chinese Dr. which seemed to make an impact for a minute…
Currently I’m using Floravital, liquid vitamins, iron and herbs as a supplement as well as Peter Gillham’s Natural Vitality “Natural Life Minerals” and Chrlorophyll, Adrenalift from Macca Magic and fresh juiced veggie juices strained over and over until they work in the gravity bags with out clogging it up. I have a history with anemia, so I can see being more consistent with the Floravital with iron making a difference. The problem I am having with my “food” is that it’s so processed that it’s lightyears away from FRESH. It FEELS lifeless. After an initial 12lb drop I’ve gained 5 back and stabilized at 145 ish. I did buy the Health Master emulsifying blender so this week when my folks come we will play with it and hopefully have a pathway for fresh veggies to enter my system again!
It is a mystery. Am I just making it wrong? Perhaps it’s just that the body needs rest…but then I feel as though I’m resting my way to more weakness! NO NO NO. WRONG DIRECTION!! I have a trampoline by my window now and I can “run/bounce” up to 5 minutes using the support bar. This is a major accomplishment.
And so the Quest remains: Mind over Matter…Do I pick this battle or channel my energy into my writing and say screw it? Is that a choice really? It not easy to pick out what’s the priority when the sands keep shifting…right now I’d settle for feeling rested and being productive RELIABLY. once more…
November 2nd, 2010 by annemarie
Many of you have asked me if I am or when is it coming out…etc.
I am intending to write my story in several ways:
1) through this blog with the addition of some background material and even more private thoughts and moments
2) several Speechless Speeches published in small short books just as they are
3) Workbooks and ebooks about the Master Plan and it’s many customized versions especially those for Caregivers and Empowered Patients everywhere
Regarding my personal story and the ins and outs of dealing with ALS as it slowly morphs over time…I’ll be adding 2 features to this blog:
1~What I’m not saying…rolling back another layer of authentic observations
2~Background story as a way to tell about life before the concerns of disease
Basically writing a few posts each week as we go, will help keep my personal book alive and rolling while all the professional stuff moves forward. I don’t want to lose it in the fray. So I’m promising you’all so I have to keep my word about it!!
Thanks for holding my feet to the fire!
If you are in Chicago on Nov 19th please come join us for a happy hour fundraiser at Witt’s 2913 N. Lincoln ave. 5:30-7:30pm
Proceeds benefit Augie’s Quest for ALS research
I will do a Speechless Speech on Managing oneself to be Extraordinary in Challenging Times
I look forward to seeing you there.
October 31st, 2010 by annemarie
Leave it to a somellier to create a liquor analogy! It’s so accurate though! My existence is being distilled by my experience with ALS. There is lots of input, periods of silence and periods of noise and information and short concise communications coming out…
I first saw this phenomena while writing my Speechless Speeches. The way I was synsethizing a concept or packaging my point into an impactful image or phrase, but it first occurred with my language: there is less output as I lose energy. I am even leading a Master Class without talking! I pass out the outline and handouts and we all lead together. My client’s are amazing! They have all done programs before so they trust my work and the value it brings. I think they are all getting more value by having to take ownership of and deliver the classroom to each other. But I stray a bit.
The Master Plan is more of a practice than a destination. Like they say,”Before enlightenment: chop wood, carry water; after enlightenment: chop wood, carry water.”
It seems as though all of the extraneous is being cut away, and I am down to the basics of life…intake/”eat”…followed by output/ produce and waste. A complex machine performing a simple exchange. I am learning to create teams because I must. I have never felt that effective with small teams. Large ones no problem. Go figure. “MORE IS GREAT” used to be my motto…as I resisted the Meis van der Roe “Less is More” Philosophy, despite having attended IIT!
Tony Judt aptly wrote that having ALS was like living in an ever shrinking room…that you knew was going to crush you one day but you didn’t know when. I don’t have that experience as much as I percieve being distilled~ it’s the sudden lack of variety in my actions, from what I do to/where I go/ where I sit to how I sleep. I am present to how many times I go to the bathroom…I never noticed that before, is it more often with the tube feeding? Seems like it is but I’m not sure.
There is just so much I dont do anymore because it just takes too much…and I’m REALLY focused. I have a mission. It drives me and keeps my brain alert and cooking with gas. So all in all, Being distilled is a good thing. I am the essence of what is important to me.
October 29th, 2010 by annemarie
Join us and Make a Difference~ Nov 19th event benefits Augie’s Quest for ALS Research
Please join me and the staff at Master Plan Programs for a networking event and a Speechless Speech to be remembered on Being Extraordinary in Challenging times! Drinks and apps are included; November 19th at Witt’s 2913 North Lincoln Ave, Chicago
$35 in advance, $40 at the door
Register online at www.kissmyals.com under events
All proceeds benefit ALS research efforts
I launched my executive coaching firm well after the onset of symptoms and we now produce programs in Chicago and L.A. So I know a bit about being extraordinary in the face of severe setbacks and challenges. Though I am no longer able to speak, I have developed a presentation style known as the Speechless Speech which gives my words a silent voice and immediate impact. I invite you to join us for an evening that will make a real difference.
I promise it will be more valuable for you than the price of admission!
This event is sponsored by my company Master Plan Programs, and Witt’s Tavern and it benefits the MDA’s Augie’s Quest campaign to cure ALS. 70 years after Lou Gherig developed ALS there is no treatment and no cure. ALS is 90% spontaneous and can happen to anyone. There are 33,000 people at any given time with ALS in the USA. Life expectancy is 3-5 years after diagnosis. So the 6000 new people diagnosed each year basically replace those who have left us. I am committed to end ALS in MY LIFETIME!
This event will be inspiring, informative and rich with ideas to make the most out of life! I look forward to seeing you there!
Please share this post…
October 28th, 2010 by annemarie
I’ve been struggling with how to convey the loss that eating is for me, as a somellier, a foodie with an adventerous palette…I’ve been priviledged to experience some of the best food prepared by the best chefs from my area in my time. I love the beauty of a well balanced dish. Taste. Texture. Presentation. Scent. I love every aspect of the art of cuisine. I also love traditional ethnic foods from all corners of the world, one of the reasons I loved Chicago so much is our access to real downhome cooking from all corners of the globe.
I also loved to cook, experimenting on my own. I weathered the loss of that habit, my bi-weekly if not daily cooking forays, albiet with annoyance as my hands grew weaker. But this is nothing compared to the loss of the celebration that eating is…the impact of not eating is a whole new ball game. Perhaps it’s the season, Autumn is my favorite time of year and the harvest combinations of sweet and savory are my preferred playground of taste. But eating isn’t just a habit that I’m putting aside, its a whole world of wonder, taste and magic that I don’t get to play in anymore…a world of tradition and family memories, a full color world that just went black and white with shades of blue but no true vibrance.
I have visions of me tasting soups and sauces in lieu of an entree as a treat in my favorite restaurants. I can’t always get soup down but sometimes I can, and pie or icecreams, pudding and gravies are good so far but most of my intake is through the peg tube now and smells like chocolate or some of the fresh pressed juices I can filter for the gravity bag. I’m only a few weeks into it and I’m sure over time my longing for favorite foods or dinners out will increase. I feel like I’m on the tip of the iceberg here and there is much more to come…I guess I keep expecting to be more “depressed” than I am about the loss of the ability to experience food.
Though I hate to use the word depressed as I believe it’s a label others(read physicians) are so eager to throw on me and I maintain I’m not at all depressed, though I get really pissed and upset from time to time…and rightfully so I believe. In any case I am waiting being more acutely aware of the loss of the ritual and sensory world of eating. I’m sure I’ll have some tale of woe…SOON!
October 27th, 2010 by annemarie
Ok not happy about this, what’s got my panties in a twist is this pervasive feeling of being vulnerable. This is a foriegn and unsettling feeling. My identity is based on being “strong like bull”…most of my life has been spent developing 1 type of strength or another. My family is known for their mental and physical strength. And now the lesson seems to be get with being vulnerable and be ok with new levels of weakness. That’s a tough pill to swallow.
This conversation first popped up last summer, when there was a warning on the Gold Coast about men in a white van trying to abduct a young woman at 7am on a weekday. I had the thought for the first time in years, if that happened to me I wouldn’t be able to fight back or get away any more…it was the first time I felt physically vulnerable in some time. The truth is I am physically vulnerable all the time now. It is an odd realization. Chances are if I am hurt it will be here at home.
Part of my identity may be being strong, no doubt formed at some point before high school, when looking or acting strong saved me from my inexperience…and then adopted as a winning formula for all situations; except it wasn’t of course and now it just isn’t accurate anymore. As my muscles weaken and my walk depends on a walker, what was once a core value of the self is exposed as a facade.
And that’s not a bad thing really, for sure it’s more honest. No posing, no posture of “go ahead try me!” I am now as vulnerable as one can be, publically so. The physical vulnerability at least allows me to be truthful when I need rest. I rest rather than press out fearing a percieved weakness. I’m not obliged to go long, stay late or be the last woman standing. I am free from all the hallmarks of a stuborn stregnth, born from a facade.
It’s foriegn, this feeling, but oddly emancipating upon reflection as well.