Posts Tagged ‘Peg tube’

#2 Set up your space…

Monday, 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.

  • Share/Bookmark

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

Peg tube nonsense…

Monday, September 6th, 2010 by annemarie

As I begin to use this appendage that Dr’s were so keen to get me into 6 months ago, it’s becoming crystal clear that they paid absolutely no attention to what I wanted to use it for and have never had to use one themselves. After all the pain, interruption and infection it took to get this piece of peg into me the damn thing is unweildy and borderline useless. It was to support my nutrition…but it is too small to carry even my vitamins ground to powder and mixed with 5 parts water with out clogging up and making a big fat mess much less handle the vitamin and fiber rich shakes I make for myself.

I use an old fashioned ratting comb( a dupont Black Diamond number 40 comb) with a 5 in metal pick on the end to punch through the clogs allowing the mixture to spit up on whatever I have wrapped around me at the time, so I can continue to inject the vitamins/water mix into the tube through a 60 ml syringe tilted at an angle to avoid the clogging of the supplement sediment. This is the half hour process I go through to take my vitamins and supplements as I can no longer swallow them and many do not come in liquid form. It is such an exhausting process that even though I’m supposed to take the supplements 3-4 times a day I end up doing it once before I get dressed. My favorite part is how the cap on the tube regularly comes undone so that it drains the content of my stomach down the right side of what I am wearing~ it’s disgusting and apparently my bile smells like mangos. BLECH.

The whole thing is absolutely unmanageable and vexing. I’m so dissappointed and feel misled and unheard all over again, as I remember repeatedly asking about the uses of the tube and how it could work for me. I’m clear I need a larger tube and hopefully a shorter tube~ the one I have hangs 12 inches out from my stomach. What shocks and amazes me is the lack of customer service demonstrated by my former hospital, there was no interest over there in my experience as the end user of the peg tube…there was alot of pushing me to get the procedure done asap…before I was ready. However there was no asking me questions to make sure I was getting the right tube for my needs, infact they didn’t ask any questions at all while they didnt listen to what I did say my needs were.

The distinctions called CUSTOMER SERVICE and PATIENT CARE were wholely missing from my procedure at Northwestern from the procedure~ which I’ve relayed in this blog…to the lack of listening to my requests and needs as their patient. It was simply not a concern for them. I call bullshit Northwestern! Your public relations campaigns are lying about your focus. I am not alone in this conclusion. 6 months later after having healed from the infection and the harrowing experience around my procedure I am again left feeling bilked and taken for a ride by those who promised to care for me. I am not someone who is interested in being wounded…It’s annoying to me! I have enough to do with out being reminded by an open wound in my stomach that isnt working for me…it’s time it began serving me for crying out loud. Let’s hope my new team at UIC’s MDA clinic can provide some answers and keenly listening ears… that would be a nice change. Perhaps they can make some sense of it, I’d be happy with a bit more workability.

  • Share/Bookmark

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

Hold the phone! NO MORE PAIN & A positive day at Northwestern!

Thursday, March 25th, 2010 by annemarie

Thank GOD! I was getting seriously bored with being such a BITCH. I am clear the upset over the way my care was mishandled on 3/7 and 3/8 is a cause worthy of correction but I was really tired of being a walking complaint! Jeez oh Peez. Part of that I’m clear had to do with being in pain from 6pm 3/7 til yesterday at exactly 1:20pm.

And the department who me called on tuesday? the one in my last Post? THEY DID A FANTASTIC JOB WITH ME. YEAH! Interventional Radiology Staff! WOO HOO. Praise be to all that’s holy in anyone’s religion. I actually felt taken care of~ a pleasant suprise. They were cordial, professional light hearted and funny while being compassionate and direct. AT LAST.

I am clear how often I took being pain free for granted in the past. I have been more grateful in the last 24 hours than at any other time in my natural life. No Kidding. I seriously thought life as I knew it was over, and life with a peg tube meant constant pain. (turns out the wound around the tube was infected) I could barely see how I would manage to get myself out of my apt on a regular basis if that’s how I was feeling…could not put my own shoes on , couldn’t sleep well, lift more than 12-16 oz at a time~ which begs for a whole nother habit all together, I thought seriously about worshipping Rum and Tequila, because childrens tylenol wasn’t cutting it! I had this heinous vision of myself as a disheveled hag drunk in a bathrobe with a peg tube sticking out. Charming.

I was so relieved I didn’t even fight Dr. Wolfe on the stomach binder suggestion. I think the poofy tummy I have is from all the drugs and surgery, she thinks it’s that my abdominal muscles have deteriorated to the point of distension. Lovely. I’ll do a raw food cleanse and we’ll see who’s right, I suspect we both are. It wouldn’t hurt me to drop all the comfort food I’ve been eating since my surgery…my normal no dairy/ no soy went right out the window. Ben and Jerry’s profits will be up this quarter. And my girlfriend’s chef- boy made me organic mac n cheese…You wouldn’t turn it down either.

Now that I feel like a human being again versus a wounded caged animal, all kinds of miracles are showing up!

  • Share/Bookmark

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

TV and News Fast for clarity

Friday, March 19th, 2010 by annemarie

So last week after getting home from the hospital, and dealing with being pissed off and trying to heal plus getting back in the swing of things re: my clients and meetings with my employees etc….IT ALL FELT A LIKE BIT TOO MUCH!

There I said it. whew. Part of me was just resigned – “really you had to screw up around me? really after all my good intentions and preperations and patience with rescheduling the procedure in the 1st place …really? you had to treat me like the asshole patient…the last thing I need right now is another project…and I’m in pain…I have a new speechless speech to write, blah blah blah… why did you have to be a turd on my watch??? Really? (I get it why people would just tolerate bad service and not communicate after out of sheer relief from being out of there!)

Then I did what I tell my clients to do in the Master Plan program and from time to time when they get uber busy and need all their faculties firing at 100%~ I went on a TV and News FAST. Since last thursday March 11th, I’ve not watched 1 thing: no news cast, no entertainment news no talkshows no late night no movies no media with the exception of what I catch from managing my facebook presence and the occasional email that includes articles. I did read Forbes~ which I’ll be blogging about later! AHHHHHHHHHHHHH what a relief and a pleasure it’s been: the absence of noise is a gift and a blessing.

Long ago I read a book by a native american professor from UC Berkley I believe, called 19 arguments for the Elimination of Television, and it shaped my use of TV. I moderate it just as one might moderate their sweettooth. I indulge during football season, and I limit it the rest of the year really. This allows me to be responsible for my mental space keeping it clear and focused: I am not unduly influenced by a proliferation of loud commercials for drugs I do not need, clothes I do not need, etc etc. Anything truly news worthy I will, hear about on Facebook or from a waitress in a restaurant. I am tired of news as entertainment or INFOtainment, which is really not News at all- it’s legitimized gossip. It’s harmful to people and useless, it’s derisive and distracting. BLECH. It’s like a diet of cheesepuffs alone~initially tasty but eventually insubstantial and destructive and constipating. Who needs mental constipation?

At any rate, I have been astoundingly prolific and freed up and happy as a result! Yes HAPPY, as I write and think and create and become more fully engaged in creating the life I want. Despite all the stuff: ALS, Recovering from surgery, CRAPPY service for the 1st 18hrs at the hospital, adjusting to the peg tube …which sucks by the way~ it smells, naturally like I suppose your tummy smells, it gets in the way of wearing a bra: and if you saw my lingerie collection you’d understand my upset here…and is a puss secreting extra belly button, that Goddamn well better extend my life by 10years for all this frackin MESS in my house! ERGH. Yep like I said I’m happy.

It’s amazing what a little clarity can provide even in the midst of several annoying circumstances. I may just leave my TV off for a month just to see how much I can get done! Today I feel especially well after giving myself permission to sleep as long as I wanted…12 hours it was…with only 1 bathroom break…delish! It’s my MANTRA~ Self-Care is the pathway to sustainable excellence.
I’m walking my talk, baby, just watch me kick some ass now. Time for a rawfood protien shake and coffee on the roof top. After all it’s 63 degrees and gorgeos here in Chicago right now!

  • Share/Bookmark

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

It’s a whole new world…and there’s no place like HOME!

Friday, March 12th, 2010 by annemarie

I am so grateful to be home. I just had my 2nd night sleep in my own bed (not the uber noisy air/adjustable bed) and without being interrupted at 4:30 am for vital signs being checked; I feel almost human. Hospitals are definitly not the place to get rest. The pain around my new 2nd belly button is down around a 2-3/10, and only bugs me when I sit up, try to speak loudly or cough. I am beginning to get my head wrapped around managing a blow hole in my tummy. Imagine your tummy as a juice box for kids and you’ll get the picture. I am imagining that due to my bountiful bossom I will be able to protect and hide my 8 inch peg tube by taping it near the underwire of my brassiere, instead of letting it hang down to my belly button as I am currently so I can lie on my side for naps and sleep. I would hate to have it get bumped and accidently open up when I’m out in public! On the bright side I have a manually operated tummy flatulence moderator! Just what every gal needs ~ a new way to pass gas, on command.

This surgey feels like a milestone in more ways than one. I fear it is the 1st in a long line of invasive procedures that are meant to prolong life, however they limit the quality of it. I wasn’t clear that this procedure would limit my mobility so much until I spoke to my new Home Health Nurse who informed me if I am to eat with the peg tube it will take me 40 mins per can of formula, w 5 cans perscribed a day that’s 3.5 hours of time spent hooked up to a gravity bag “feeding”. 40 minutes at 5 distinct times a day…That’s alot of time folks! Also – there are NO organic or responsibly produced versions of formula for adults on the market, that I know of at this time- someone call Dr. Mercola! I want a safe raw food based healthy no dairy no soy good for me formula. ( dairy and soy produce too much mucus and this causes difficulty breathing) For a foodie like me having only 1 option is unthinkable! OY.

It’s a good thing I was out for most of my 20’s and 30’s, because I’m definitley IN now! As I look at the last month since our 1st fundraiser, I have spent an inordinate amount of time at home. 1st recovering from said fundraiser, followed by a 48 hour flu/food poisoning bug 2/21-23 then preparing for the scheduled surgery on the 26th…going in for the procedure getting knocked out and then coming home all drugged up…I hung at home having scheduled nothing due to my intended recovery~plus the weather SUCKED.
Then finding out the rescheduled surgery for 3/8 and the last 2 posts tell that saga…so pretty much a homebound month. It’s a good thing I love my home!

I am resting and thoroughly enjoying being a homebody, however I must confess had I known how life with a peg tube would actually look I would have done a round robin Chicago dining adventure to all my favorite spots in the weeks preceding the surgery! I’m going to have to schedule 1-3 diners out a month while the chewing and swallowing is still good. As it is I’ll be packing a 60CC syringe a bottle of water and formula with me wherever I go! Jeez oh peez! I am hoping I’ll get the clear to take baths again after I revisit my surgeon, Dr. Tepper~ who did a beautiful job by the way, according to every other Doc who’s seen it! Soaking in a hot bath has been a ritual of mine for many years and I’d really hate to see it go.

I’m in a bit of a battle for my independence: just in the last month I have needed support cutting my food- veal piccatta to be exact, and after my surgery I did need help with my bath and washing my hair~ Thanks MOM!!! My super fantabulous Home health Nurse Dina noticed that manipulating the “food” or formula delivery system was going to be a challenge for me given the weakness in my hands, if this gets worse I will need in home care MUCH more frequently than the 1-2 times a week I’m getting it now. More like 2 times a day UGH. I am SO not ready for that. I was SCREAMING to be alone after being in the hospital for 3 days, that was the most intrusive/ invasive part of the experience…Not being able to think or write or even sleep when you wished was the most psychologically annoying part, also exhausting I might add! I am unwilling to make like an invalid!

The emotional impact it just hitting Home now, I have installed a device that will gain me more years on the planet, and there is a cost to using it. Right now I don’t dare cry, laugh, cough, talk or eat too much as my stomach will cramp as I’m still sore after the surgery. Hopefully in the near future this device will allow me more freedom not less as I acclimate to using it and allow the new structures we have in place to support me! I am working on being willing to recieve. It’s never been a strong suit of mine and perhaps that’s really what this lesson is about, being willing to recieve and being willing to be cared for. Either way I’m certainly learning there’s no place like HOME.

  • Share/Bookmark

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