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!
Tags: avoiding constipation, powerful pooping
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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.
Tags: advertisment poison, TV as a drug
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October 20th, 2010 by annemarie
I swear to GOD it’s true…I putter around my apartment going from task to task making mess after mess after mess! I am constantly dropping things, spilling and over all reverting to a terrible 2yr old mess maker with all the annoying embarrassing afterglow provided by actually being an adult. Hmmph.
I have created 2 wardrobes- go out clothes and stay home clothes, most of the latter are disposable, comfortable and easy to pull on and off: even for me. It’s interesting to see how much stuff becomes meaningless when you can’t help yourself from making a mess…and how many cleaning products find their ways into being prominently and handily displayed in the home.
Today I start the process of redesigning the layout of the apt to accomodate more people and more equipment and workspaces for me. Hopefully we can makeover the space into a less mess-up-able layout and one that still provides an atmosphere of healing. Every time there’s a change in capacity there is something to reorganize~ same if your capacity expands or if it contracts!! AND change itself always causes upsets…Life is Messy…get into it!
Tags: disposable clothes, life is messy, Pig pen
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October 18th, 2010 by annemarie
Every time you change up the systems and practises of your care you gotta re-evaluate the physical space and set it up to allow for smooth functionality…or else you make a big fat mess~ at least I have been!
As I shift from eating 80% of my food and getting 20% through the feeding tube to roughly the opposite 80% tube feeding and 20% real food, I have a whole new structure around food and feedings. 1st of all it takes for frickin ever to “eat”. I am hooked up to these gravity bags for 40-50 minutes per feeding, Jeez oh peez! It’s a total disruption, and when you bump the peg open by accident and half of what you just “ate” runs down your body …like it did today…it’s just a pain. I am struggling to get enough calories and the right types of food and calories. Most of all I just feel undernourished and eternally hungry…as if I ate a protien shake for breakfast, worked out and had to wait 2 more hours for lunch! GROWL! All the time! Whew.
So I have completely re constructed my kitchen and set up the waters and myoplex and Naked juices w protien and Perfect Food powdered greens to replace the veggies I can no longer eat…new liquid vitamins, minerals, blah blah blah…filters and funnels and mixing bottles and now the resolve carpet cleaner stays in the living room next to my seat where I “feed”…etc. It’s been a bit chaotic and sloppy and well, a big fat mess~ especially with my weak no grips having hands!
As I’ve been feeling weaker with the shift in feeding style, I went to see a Chinese Doctor for some herbs to support some more vitality and energy…which got me a homemade tea concoction that includes a bit of prep itself…and tastes and looks alot like what I always thought the dregs of a spitoon would look and taste like. BLECH. Probably because it has to be boiled down for 90 minutes daily…
Thank God I have a friend who’s helping set me up to win with that structure tomorrow! I hope it helps…and doesn’t end up draining down my leg!
I’ll keep you posted.
Tags: hunger, low energy, Peg tube, Physical Space, set up to win, Structures, systems
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October 18th, 2010 by annemarie
1st things first: Get people on your program…this means organize your caretaking team, fully communicating what you want and need, posting your mission and creating a charter of care AND making a binder of notes, recipies, preferences etc… Such that anyone can pick it up and contribute in the ways that make the biggest difference for you.
I guess I’ve always been a bit of a lone wolf…so it’s been a process to train people on my care team to know what I’m wanting, needing and looking for with a mimimal amount of frustration. IE: fresh raw veggie juice doesnot equal V-8! And avoiding dairy does infact include sour cream… I’m finding it useful to post guidelines and outline standards of how I want to handle things in and around the house for instance very helpful for everyone.
But let’s take a step beyond the basics~ there comes a time when you have to choose how your treatment will go and what elements it will include. There is an attitude and intention behind it all, something far beyond “make me comfortable” something that traffics in the realm of MAKE ME WELL. You have to create your purpose and get that purpose fully communicated into your family and friends, such that when you can no longer see it’s possible to heal they will hold the space for your full recovery while you self-correct. This is critical to enroll your environment to carrying the banner forward and pull your experience along with it if neccessary. Together you all create a healing ETHOS and ATMOSPHERE.
They must believe in the face of no agreement. If people are unwilling to keep the faith regardless of how you look, what you are saying, what it looks like right now YOU MUST allow them distance and get them out of you’re space. FAITH. KISS MY ASS IT’S GOING MY WAY unshakable, undauntable faith. Held close to the heart by a large group can and will cause miracles. It’s your way or the high way…period. Non-believers need not appear, apply nor approve. Fake it til you make it…you don’t have to know how just hold the space for the way to appear.
This is not easy. But it beats the heck out of being a space suck! Contribute Energy! Be clear that it takes something to hang with those of us that are intensly sculpting life out of every breath. This is the GAME of life folks…Let’s Play!
Tags: Communication, enrollment, Faith, Focus, Provide Healing ethos
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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.
Tags: bedside manner, being heard, Empowered Patient
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October 14th, 2010 by annemarie
Seriously people…if you or someone you know is becoming more dependent on others do them a SOLID and keep their personal preferences and expressions of self in place! In my case that looks like don’t give up the sexy high end lingerie…I don’t know what it is for you that you’d rather not live without, but whatever it is get those around you on board…
This came up for me 2 weeks ago when my sainted mother bought me some “underpants” at Sam’s of all places…!st of all I DO NOT WEAR “underpants” let us be perfectly clear! I wear lingerie. I wear Prima Dona, Chantelle, La Perla, Hanky Panky, and names of that caliber. I have plenty of good panties though after my recent weightloss, another 45lbs this year, I could use a new bra fitting to be sure.
Regardless, my mother felt the need to purchase “underpants”. Which is endearing that she is thinking of me and taking care of me, though I found I had the need to instruct my sainted mother in the distinctions of lingerie. Given how much she also owns I found shocking that I needed to do so. What she bought was not only too big- think granny panties- but cheap and gross feeling as well. BLECH. how embarrassing. As embarrassing at 44 as it was at 14.
So why is this important? I think it’s important to keep certain aspects of your personality and personal expression sacred especially at a time when one is losing one’s capacities for self expression and environmental control. You must communicate the non-negotiables with your family and friends. Bless her heart, my Mom laughed about it.
For the record: I am not losing the sexy! I like the way I feel when dressed in great lingerie regardless if anyone sees it or not! You can’t take that away from me! I don’t care if I am using a walker!! Damn it. Somethings are sacred and non-negotiable!
Tags: diminished capacities, Keeping yourself present, personality
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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.
Tags: Attitude, change causes upset, mental edge, renewed, shakled
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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.
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October 12th, 2010 by annemarie
1 yr old on Thursday October 14th, I have been experiencing a need to account for myself, to re-up my committment to the blog somehow; especially in light of my recent case of the “why bothers” and the feelings of futility that have accompanied my recent fall and peg tube replacement surgery. ALS marches on…I graduated from a cane to a walker complete with a chair and a basket.
Then again I could just be missing my shoes…52 pair of which left the home for ebay last week. A veritable plethura of museum quality shoes…sigh. Lovingly collected and proudly worn, the primary means of fashionable expression for a woman too chubby to dress as she would prefer over most of the last 20 years.
In either case, I’ve been in a “mood” or a miasma of apathy~ beginning dozens of blog posts and setting them down unfininished. I have a feeling there should be an annual report: at the end of 1 year what difference have we made? What can we quantify? What do we know for sure?
We raised 32,000.00 for ALS research. We have 586 members in the Kiss My ALS Facebook group. There have been 147 blog posts. I will look up the number of Twitter followers(110) and unique visitors by Thursday. Speechless Speeches have happened infront of 1000 people or more. We’ve been featured in local and national news broadcasts and the Chicago Tribune.
Well, I have to say just knowing that makes a difference for me. As they say every conversation makes a difference…if that is as accurate as I like to believe, we have indeed made a difference.
Tags: Accounting, ALS Progression, futility, making a difference, miasma, shoes, walker
Posted in ALS Experience, ALS Thoughts | Comments Off
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