Archive for the ‘ALS Experience’ Category

« Older Entries

When lost~ Find a Guide

Friday, 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.

  • Share/Bookmark

Posted in ALS Experience, ALS Thoughts | Comments Off

What is it to be alive?

Sunday, 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.

  • Share/Bookmark

Posted in ALS Experience, ALS Progression, ALS Thoughts | 1 Comment »

I’ve lost that rested feeling…

Wednesday, 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…

  • Share/Bookmark

Tags: , , , , , ,
Posted in ALS Experience, ALS Thoughts, Observations & Musings | Comments Off

The experience of being distilled…

Sunday, 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.

  • Share/Bookmark

Posted in ALS Experience, ALS Thoughts | Comments Off

Vulnerable Smulnerable

Wednesday, 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.

  • Share/Bookmark

Tags: , , ,
Posted in ALS Experience, ALS Thoughts | Comments Off

Back to Smooth Move tea…

Sunday, October 24th, 2010 by annemarie

About a year ago I first wrote about tips and techniques for powerful pooping, and given the changes I’ve been experiencing with elimination as I transition to an 80% feeding tube/liquid diet I thought it’d be a good time to revisit those suggestions. One would think that liquid in would not make for constipation or difficulty pooping, however this is not the case. Perhaps it’s the high protien mix I’m using or maybe it’s the further weakening of my muscles around my intestines either way I’ve got a fine line to walk because too much assistance isn’t good either!

Let’s just say gentle methods are preferred…If I could still swallow I’d be using the long life cocktail~ the ground flax seed unsweetened cranberry juice and water solution once or twice a day. I do use the marathon runner’s trick of a glass of cold water followed by a glass of warm water. I also add flax seed oil into my gravity bag of “food” from time to time, you can put yours in your protien shake along with some ground flax seed and that should support your elimination. Add dietary enzymes to your supplement routine along with probiotics and if you need immediate release throw some aloe vera juice into a protien shake or fruit juice and wait 10-20 minutes…for real.

I am newly a fan of the step stool in front of the toilet and still putting my arms up over my head to move things along, as I am impatient by nature…when in doubt, of course grab that Traditional Medicines Smooth Move Tea and sip away…in any case…Better out than in as they say!

  • Share/Bookmark

Tags: ,
Posted in ALS Experience, ALS Thoughts | Comments Off

Managing your mood? TV can be the enemy

Sunday, October 24th, 2010 by annemarie

Being a football fan, I watch more TV in the Fall than any other time of the year. I am always present to the impact it has on my mood, but this year in particular seems rough. I hate political ads on TV. They bring out the worst of being human, and are designed to instill fear and anger. I understand the need to get people to the poles but do you have to vomit allover everyone’s psyche to do that?

It’s not just politics, it’s products and product placement. You may have heard me rail against the ridiculous campaign for your viagra/cialis dollars during sporting events…How do Dad’s watch the game with their pre-teen and teen sons exactly? WTH? If you listened to the ads you would think we are a bunch of impotent, irregular, incontinent, drug dependent, chronically depressed, obese, beer guzzling, uninsured, walking heart attacks with a spouse who has cancer or alzhiemers who think melted cheese is a food group AND we have no choice in the matter. Now, while statistically this might be more accurate than I thought, I assert a full half of it is caused by the influence of the ads and television and not eating real food, read: raw organic veggies and unmedicated organic grass fed meats.

Can I oversimplify? Hell yes I can! Back to my point~this fall I find that I literally need an antidote for the TV…I find it so oppressive ( did I mention the part about most of the news being legitimized gossip?) I guess I’m just pissed off at the whole fear and mayhem genre of advertisement. My Antidote is READING! I am stimulated and energized by reading where I feel sucked dry by the television. It’s been a convenient thing to turn on while I’m feeding and connected to the tube but after 2-3 weeks of convenience I have been paying the price in my attitude and outlook! JEEZ O PEEZ! I’ve got enough to deal with without adopting or allowing the vomit of pharmaceutical companies to colour my world.

I guess this means the ads are effective, they are designed to move us after all, I just want to be the one to say how I am AFFECTED by them. Be responsible for what u allow into your physical, mental and emotional space. It determines what you’ll be able to respond to…So do yourself a favor and modify your TV consumption to better manage your mood and protect your positive outlook.

  • Share/Bookmark

Tags: ,
Posted in ALS Experience, ALS Thoughts | Comments Off

Demanding Bedside Manner?

Friday, October 15th, 2010 by annemarie

I look at this from 2 points of view- the Doc has a bedside manner and so does the patient. I am practicing you get what you give…being a mirror of what I’m getting in this area: If you listen to me and read what I’m writing on my pad of paper, and you show some care you will get consideration right back…however if I feel for 1 second dismissed or ignored or unheard I will stop you in your tracks until I get you attention. I’ve been burned before. Things have been lost in translation from 1 department to another and I’m just plain sick of it.
All Doc’s please be on notice…get present, don’t assume you know jack and look at me when you speak not at my friends and family.

for frack’s sake. It’s to the point where I don’t feel I’ve done my job as an empowered patient until I get the eyeroll and the label of “DEMANDING”. Apparently that’s what it takes to get all ya’lls attention. Wake up people: The largest room in the world is the room for improvement.

For you patients out there~don’t be afraid to be the grit under their skin…better to get loud and proud and get your questions answered at least then you’ll know! For example when I had my peg tube replaced, I found out IT”S SUPPOSED TO BE EVERY 6 MONTHS! Yep, news to me too. Every time I find something out I should have been told before it doubles my resolve to be a high maintenance hellcat. Sad but true. Being demanding means I’m doing it right apparently.

  • Share/Bookmark

Tags: , ,
Posted in ALS Experience | Comments Off

confession

Thursday, October 14th, 2010 by annemarie

A year ago today I sat down and wrote my 1st blog post, I promised myself I would always be honest, tell it like it is and be ruthlessly straight. In honor of that committment: I lost my edge. I don’t know where I put it. Did I put it in a particular bag? Drawer? Pocket? Somewhere, I lost my edge! My will to fight…my Kiss My ALS attitude. I swear it feels like a stranger took over my mind and body.

It has taken everything I have to get ramped back up to being alive and enrolled in the life I have now. It began with the fall here at home, which scared me to death~ huh~ I just got how literal that was: the fall actually scared the life right out of me…and it’s been nearly a month and this is the most significant challenge I have faced to my mindset thus far.

Many things are in transition: integrating more help around the home, balancing that with my need/craving for solitude and creative time; switching from a cane to a walker and the limits that brings…or better said the considerations I have about leaving the house w a walker and managing it. Suddenly, I don’t get out much anymore, as I move towards more tube feedings I am shackled to the house and going out to dinner just doesn’t make sense as the threat of choking increases with the chance of aspirating food into my lungs. It takes so much effort to leave the house, I am constantly looking to streamline my excursions and create new systems for feeding and H2O and vitamns and working…everything suddenly takes twice the effort: eating ,walking, typing…WTH.

Well, we know change causes upset, so I guess I’ve been operating on top of lots of upset and not dealing with how pissed I am. Actually, I’d love to get pissed off about it! Instead of being resigned…and tired of being tired…I’ve never been very tolerant of poopy moods. I apparently need to adjust to conserving energy for whats important to me.

Just yesterday I woke from a nap with a new sense of piss and vinegar, verve and that integral demanding chick. Funny that it came from a nap isn’t it? I’ve always had a sort of inner compass, been able to sort myself out, self correct…it’s just never quite taken so long. Not since I was originally diagnosed. It takes something to get enrolled in a new lifestyle. I just don’t happen to like the flavor of the month, I am however renewed.

  • Share/Bookmark

Tags: , , , ,
Posted in ALS Experience | Comments Off

A bigger peg tube helps but…

Wednesday, October 13th, 2010 by annemarie

So here’s what I’ve found out through experience…you can expand the size of the tube, but you are still limited by the delivery systems available to you. Now to be fair I had a teeny tiny peg tube installed by a radiology dept as far removed from the end user and functionality as I am from playing for the Bears. It was constantly becoming clogged and wholely ineffective, as well as a nightmare to have installed and never quite explained to me…for ex: at my new peg tube install surgery I was told you need to have a new one put in every 6 months…NEWS TO ME!

However, in my quest for a larger pegtube to allow for higher fiber foods and better nutrition ~ something above the consistency of chocolate milk, I have found that no matter my committment I am still thwarted by the delivery systems available to me…the syringes 60ml, the gravity bags and the caps on the end of the peg tube itself. It feels as though the whole flipping industry has conspired againsts me!

I understand this is irrational and untrue or at least unintentional. It’s just 1 more thing to surrender too. UGH. There are so many things to surrender too…the experience is one of being unheard, not considered and thwarted. Big battles over little things, such that one is exhausted before the big fight. As this process continues, it gets more difficult to pick your battles. It would be nice to see some products designed from a patients perspective.

Having said that, there is of course a way around everything…and I’m in the midst of an equipment upgrade: a health master or vitamix something that emulsifies food so it fits into the limited delivery systems.

  • Share/Bookmark

Posted in ALS Experience, ALS Thoughts | Comments Off

« Older Entries