So next week is my first-year "anniversary" of when my life changed forever. Did that date stick out in anyone else's mind? 12 months later and I'm still firmly stuck in the shellshock/denial stage, I suppose. And what's so odd is I can recall so vividly the week leading up to when everything went all to hell, as if it were yesterday. We're experiencing the exact same weather (gorgeous warm autumn days and cool nights). I can remember the last meal I ate (having no idea at the time it would be my last meal). What I was wearing when I dialed 9-1-1. The plans I had for that weekend. The three trips I was planning to see friends/take in some concerts. How excited I was that my new home business was doing so well that I was actually turning away work. Loving my new apartment. The long walks I'd take in the evening after dinner, just as the sun was starting to set. Now I feel like I'm forever stuck in the "pause" mode. In the past year, one friend got married and had a child. A few others got major promotions at work. Two others are expecting their 4th and 2nd children, respectively. One just moved to California. Their lives are moving ahead as they should. I can't help but feel resentful. Not of them; I'm glad they are doing so well and are so happy. But I just have all this cooped up frustration and anger. I hate that I've become an "invalid," that since I rely solely on disability for income now, I'm living at what is considered the poverty level. And none of that will change. I'm 44 years old, single, and living back home with an aging parent whom I can't help out in any way, be it financially, with house work, yard work, etc. Instead, she's taking care of me. It's not supposed to be that way. The holidays are just around the corner and what I'm "anticipating" is a dreaded surgery I might not survive or waking up to the words, "yes, it's cancer" and wondering how in the hell I'm going to deal with that diagnosis when I still haven't come to terms with everything that's already happened in my life. I don't know how to find my own spine anymore. It seems to have disappeared along with all my intestines...
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my first year "anniversary"
- By Woeful
- Posted October 21, 2009 at 2:29 pm · 5 replies
- In Home IV feeding (HPN, parenteral nutrition)
- Shared with the public
5 replies
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- Newest first
- By LabLover
- Posted October 26, 2009 at 9:15 am
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Yes, that day sticks out forever- Nov 11, 1986 for me. The first year was VERY woeful but now, soon to CELEBRATE my 23rd anniversary, I think of all the great things I would have missed had TPN not been around in 1986. Seeing my nieces and nephews grow, the birth of my latest niece (age 1), celebrated 25 years of marriage in Alaska, able to be there for my aged and now deceased parents.
It has not always been that way. I too faced the loss of a good job, trying to get ins coverage, facing high medical costs, not knowing how the next surgery would turn out, fevers of 106, etc.
However, all I can say is things do get better and I'm very grateful for TPN to keep me going all these years. Things will also get better for you too. Hang in there.
- By jackrabbit
- Posted October 26, 2009 at 1:05 pm
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My 'dates' are seared like branding scars in my memory too. September 12, 2006, the day when my face was injured in a work accident, and, after three years of deterioration, the final blow: August 11, 2009, the day of my last meal. It was breakfast; oatmeal with rice milk and blueberries. I don't even like oatmeal. And the blueberries were store-bought and sour. I had three spoonfuls before the agony began to tear through my skull. My last drink - 3 mouthfuls of water. And I don't even like water! I like juice... But, that was my last meal. Last snack, more like it.
I lost my job, my career path (culinary arts - how ironic!), my apartment, my independence... I too had to move back home, with my single mother who works part time and is having to support me until I can get disability... And due to the extreme sensitivity of the damaged nerves in my face, I can't even leave my house (can't be exposed to wind, rain, sunlight, hot, cold, etc).
It's difficult. But I try to look at the small things that I am happy for - being with my siblings, who are my best friends. Getting to cook for a household that's too busy with sports, work, and school, to cook for themselves, and so getting to contribute joy in some small way. (I consider it a small feat that I'm able to make delicious meals without the ability to taste them! Adding spices is like flying blind...) Having the time to read all the books I want, watch all the movies I want, and work on my poetry and novels...
Once everything in my life gets settles down and sorted out - having my PEG replaced with a Mic-Key, getting disbility, maybe having my own customized house built eventually, etc - then I can focus on how I can still, by way of my computer and letters, do things to make this world a better place, like helping raise funds for rescue centers for child soldiers.
It is NOT easy, but I try to focus on what I can do, not what I can't. What I enjoy about the life I'm living, not what I miss. I gain joy from small things - the sound of rain, sunlight through the window... I have my down days when I'm depressed and panicky and the future seems like a black void. I dream I can eat and wake up crying. But I think sometimes - just think if I was a Dalit 'untouchable' in India with this condition and no money, no medical support, no food, no furniture, no computer, no nothing. In comparison, I have so much, and I try to at least be grateful for that. I gain courage from reading accounts of other survivors - survivors of illnesses, accidents, war, famine, political upheaval, concentration camps... The human capacity for survival is immense. And the capacity for happiness, even in the worst of circumstances, also inexplicably exists.
There's a quote from a poem called Prospice by Robert Browning that I love:
"For sudden the worst
turns the best
to the brave."
Life isn't fair, it just is, and in the end we have to choose how to live the best possible life with the circumstances we've been given. But I'm not ever going to be naive enough to tell anyone to just cheer up, snap out of it, etc. I believe we need to give ourselves the time and honesty to fully experience our feelings - grief, rage, whatever - give them voice and legitimacy. But then, to let go and take steps to help ourselves move on. There's no timetable. It happens on it's own clock, so long as we're willing to work on moving towards acceptance instead of clutching our misery like a life raft. It's a journey. Eventually our goal is not just to survive, but to thrive.
After Mount St. Helens exploded, devastating an entire landscape, ingenious artists took the ash and turned it into beautiful porcelain figurines. Also, under high pressure and heat, they were able to turn the ash into green jewels that looked like emeralds. Ten years later, the mountainside which had been a barren wasteland became more luscious with greenery and supported more animal life than it ever had before, because the ash caused the soil to be so incredibly rich.
You too, can rise from the ashes.
- By Woeful
- Posted October 26, 2009 at 3:07 pm
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Jackrabbit,
My last meal was luckily one of my favorites (I always ate out; I never was a cook. I'm the kind who can't even boil water properly, lol). I stopped at Panera Bread and had a grilled cheese sandwich -- melted cheddar and tomato on toasted wholegrain bread. The day before I had breakfast at my favorite local restaurant (they make amazing home fries). And the week before, I had my favorite "bad food" indulgence--a hot dog with the works (loads of chopped vidalia onions, chili, sauerkraut, mustard--there's a local restaurant in my hometown that's 'famous' for its "dog with the works"--I'd drive 35 miles to my hometown on occasion just because I had a craving for one of those dogs). The food I most miss is Italian of any kind (my favorite) and my mother's fabulous pot roast. I did cave in and eat a small slice of pizza last night. Took me forever because I had to chew it very thoroughly (so it didn't clog the tube) and drink big gulps of water after every bite, but it was worth it. I can still eat some things (as long as they'll pass through the tube), even though I get no nutrition from what I eat and it comes out my J tube almost immediately. But seeing what it looks like as it comes out my J tube turns me off eating for the most part. It's too gross looking, lol.
As for moving back home, scary and depressing, isn't it? I'm glad I'm here for her because of her losing my dad, but it hurts me to see her working so hard and I can't help out. Can't help her rake leaves, wash the car, shovel snow when the time comes. She lives in an old house that needs work and I can't help her with any of it. She's also living just on a small teacher's assistant pension and Social Security (she lost my dad's pension when he died; that's the Teamsters for ya), so money is REALLY tight for her. Me, I make just enough from disability to pay my bills but literally just that. And all these unexpected additional copays have been killing me. I've been putting it off, but I'm getting to the point where I'm probably going to have to declare bankruptcy, and that just makes me ill to think about.
I'm sorry about your nerve damage :( My sister's in a similar situation. She had experimental chemo a few years back that left her with horrific neuropathy and diabetes. Her hands and feet are permanently blue. She can't touch anything hot or cold, so wears gloves whenever she has to get into the refrigerator or go outside (if it's too chilly or too warm).
Sounds like you have a good support system too, which is definitely crucial. Unfortunately, right now my mom and I are each other's sole support system. (All my friends, except for 2 people, all live out of state.) Thank God for the Internet, or I'd truly be cut off from the world.
Regarding Mt. Saint Helens, I'm one of those weird people who always sees the eventual beauty that results from volcanic eruptions and forest fires. Yes, they are devastating at the time, but it's also nature's way. And a decade or two down the road, that area of devastation is usually more breathtaking than ever.
- By jackrabbit
- Posted October 27, 2009 at 1:33 pm
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I'm glad you at least had the chance to enjoy a little bit of pizza, even if it was an ordeal to eat and came right back out the tube!
If the food gives you no nutrition, as you said and just comes back out the tube, then perhaps there's another way you can enjoy flavors without the hassle of trying to swallow things - chew and spit. There's quite a number of people here on the site who do it. That way you can enjoy the flavor and texture without having to go through the hassle of actually trying to get the food down your throat.
I know how hard it is not to be able to help - I can't do any of the outside stuff either because I can't go outside, period. Luckily I am able to help with stuff around the house - cooking, vacuuming, etc - but I never feel like it makes up for the money I'm not able to contribute towards the electricity bills. I definitely hope I get some form of disability soon; not only would I not feel guilty about being on the computer; I'd also be able to buy extra food for myself whenever I feel like juicing or blending some extra fruits or whatever to stick through my tube. Right now because of my financial situation I get my cans of formula for free, thank God, but I'm on a specified amount and I'm worried that if I go above that I'll run out of food and the supplier won't be really happy about replacing it ahead of time. They're never happy when you 'cost the healthcare system'. (I live in a socialist country).
I'm SO sorry for your sister, that's horrifying. I used to be able to just cover my face with a ski mask whenever I wanted to go outside, but now it's so oversensitive that it can't be touched so I can't even wear the ski mask. You're sister is lucky she can at least wear the gloves.
Good support system - haha. My siblings, who are all teenagers and still at home, are definitely a good support system, but my mom goes between being helpful and difficult (see my post 'My parent is EMBARRASSED by my PEG!). She feels it necessary to inform me of hurtful things like how grossed out people will get by my stomach tube or how the protective face mask I have to wear scares everyone.
Other than that I have no family in the country, and no friends nearby, and I don't live in a very supportive community. Since I'm competely housebound, the computer is my salvation...
It's cool you also see the beauty in 'unusual' places. Anyway, I see in my inbox that you've replied to one of my posts, so I'll go check that out.
It's been nice to talk with you...
- By Juhint
- Posted October 27, 2009 at 2:04 pm
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Woeful, Jackrabbit!
You are my heroes!
Julia
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