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Weekend update

Sunday, September 05, 2010

First of all, thank you, thank you! emoticon for all your kind words and support. I'm amazed at the strength I can draw from knowing you guys are out there - I really had no idea of the power of community.

As it turned out, they didn't send him home the other day. They kept him over night one more night, and he was transferred to the transplant center - by ambulance, and I met them there with my own vehicle - early Friday evening. Since it's the weekend, they're not doing much besides getting him stable and in the best condition they can, and doing some preliminary testing. The main screening, typing, and evaluating will be done Monday or Tuesday when the regular staff is in.

After a brief kerfluffle over room availability - it's college weekend - I'm staying in a nice hotel/motel/inn/conference center about six miles away, getting the hospital visitor rate ($40/day) with all kinds of discounts and a shuttle service. Being the good Scotsman that I am (I crossed out "skinflint"), I brought a loaf of bread, a jar of peanut butter, some Swiss cheese, a container of mayo and a bunch of tomatoes and apples from home, so I don't need to buy food. Hey, why spend when you don't have to?

That's pretty much all I know at the moment. I got 12 - *twelve*! - hours sleep last night - that's more than I've had in the last week combined, so I feel a lot better. Now it's time to go back to the hospital. All I really do is sit in the chair (I also brought a bag of library books) and make sympathetic noises, but I think it does both of us good. And I have a 22 year old daughter at home holding down the fort, so no worries there. We'll see what happens next.

  Member Comments About This Blog Post:


    It's your job to suck as much support out of the universe you can get your hands on. Without it, you'd have nothing to give to your husband. I am proud to be part of the direct stream of love & thoughts showering over you right now.

You need this as much as sleep, books, peanut butter and apples. If you feel yourself getting low, let us know so we can fill you up again!
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LUNADRAGON 9/7/2010 8:46PM

    My prayers are with you and yours!
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SUZYMOBILE 9/6/2010 9:17PM

    My thoughts are with you, too. It must be a relief to know he has good care and that home is taken care of. All you have to do is BE there.


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PENNYAN45 9/6/2010 8:53AM

    It is good that he has been taken in by the powers that be - and is now in their hands. I am thinking of you both and sending good wishes your way.

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STARLASUE 9/6/2010 7:41AM

    All those prayers and energy sent seemed to have gotten hubby where he needs to be. Good to hear you were able to get some much needed sleep.

Sending more prayers and energy that a transplant be possible for him sooner rather than later if it is for his highest good.

We are with you in spirit.

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    I'm glad they decided to get him seen asap because it sounds like he is in the end staged of liver failure. Take care of yourself.

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LINDAKAY228 9/5/2010 7:44PM

    I am so glad they didn't send him home and are continuing with the transplant pre-requisites or whatever they are called. And I'm glad that you got some good rest too. I understand your mentality on the food too, especially since you have no idea how long this will be or what will be down the line. My thoughts and prayers will remain with you. I've subscribed to your blog so I can follow what's happening as you have captured my heartfelt support.

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SHERYLDS 9/5/2010 12:58PM

    My thoughts are with you both. Hang in there. emoticon

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Another brief announcement - Now with up to the minute news!

Thursday, September 02, 2010

emoticon On Monday, husband was reasonably well when I left to go shopping at noon. Got home four hours later and he was very confused and shaky. We decided to take him to hospital, but he opted for an ambulance instead. (We got two ambulances, almost a third, five cars, two pick-up trucks and a motorcycle - must have been a slow night at the ol' Emergency Center.)

After spending six hours in the emergency ward, he was admitted. He was pretty much of a mess - high blood ammonia, dehydration (apparently all the fluid that should have been in his bloodstream is currently residing in his legs and abdomen) and general liver failure. It's a little country hospital, though, much better at dealing with broken arms than failing livers, and after an absolutely amazing amount of paperwork and telephoning, he's being transferred to a transplant center in Rochester. He's still at the community hospital but will be transported there in an ambulance (the local ambulance corps has never made such a long transfer before - they're all excited. "Road trip!") as soon as a bed opens up.

So I have to be ready to leave at five minutes notice, and this can happen at any time, 24 hours a day. Your basic "hurry up and wait". Luckily, I have a daughter here to keep the home fires burning while I get this transplant deal underway. Both daughters are still willing to give him part of their livers (mine's got a few miles on it, but I'd give him some - hell, right about now a month in bed in exchange for a major organ sounds like a pretty sweet deal) but we won't know until the transplant people do their type-and-screen thing whether that's possible. emoticon

Since they're doing this evaluation on an in-patient basis, it looks like no matter what, he won't be home for a while. This is, oddly, a bit of a relief. I hadn't noticed how much of a strain it was to be on constant guard of his taking a turn for the worse and to be making care decisions that, honestly, I had no business making.

But at any rate, I likely won't be around SP much - very little extra time at the moment (although the hospital does have bootleg-able WIFI.) emoticon

I'm not especially worried, or at least not yet. It's a relief to have him be someone else's responsibility, have them responsible for decisions, have them administer care, and now we're actually underway on some treatment. He could most certainly still die at any time - he's a very, very sick man - but he'll be in one of the best transplant centers in the US any minute now, and I couldn't ask for more than that. And Rochester is only two hours from here, so I can go back and forth regularly.

I'll report back as things progress. Please keep us in your prayers.


That was at 9:00 a.m. Now, a mere hour and a half later, all that is in question. Apparently there is still no bed in Rochester, and since he seems to have stabilized and, after four days, is at a statistically higher risk of catching something in the hospital, they now want to send him home. And of course, if they send him home, Rochester won't do the type and screen as an inpatient - they'll do it on an outpatient basis, which means car rides with him in the passenger seat, vomiting in the car (traditionally into the glovebox emoticon ) hotels that I can't find or afford, and a few million other things I'm not one bit ready to cope with.

But first they send him home again. Where I go back to checking on him every hour, being the nurse, dietician, drug czar, warden, overseer, housekeeper and general in-charge-of-everything life and death person (in addition to my usual duties as veterinarian and kennel lord, all-around handyman, legal secretary, landlord, and field medic for all things animate and inanimate. (Not to mention my actual, official job that I do for income.)

And he'll do as he pleases, and we'll be back in here in a week or two. Only next time I'm liable to be in the next bed.

This sounds horribly whiny and selfish, doesn't it? So add guilt and shame to the list, because why wouldn't I want my sweetheart home again with me?




  Member Comments About This Blog Post:

PENNYAN45 9/3/2010 3:02PM

    You are dealing with more than most could handle. Of course it is better for him to be in the hospital. My wish for you is that your husband gets admitted to Rochester soon.

Take good care of yourself in the meantime.

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STARLASUE 9/3/2010 7:01AM

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

This double posted so I must not have hugged you long enough.

Comment edited on: 9/3/2010 7:02:01 AM

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STARLASUE 9/3/2010 7:00AM

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

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SUZYMOBILE 9/2/2010 10:00PM

    Gosh, I wish I'd checked in here sooner. You'll definitely be in my thoughts and prayers. You're such a strong woman, yet this is just too much to try to do all at once. Give yourself a break, somehow, by finding time for yourself.


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    As I told you before, I think he's going to need a transplant soon so hang in there. Try to take care of yourself the best you can and rest when you are able. You need your strength. I'm sending prayers.

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JANEDOE12345 9/2/2010 12:58PM

    This is at the point where nothing anyone says can offer you the supprt you need: You need a hug and a nurse's aide.

Try to work around whatever guilt you are cooking up. There is NO reason for it! We take care of the sick because of our human nature, but we do not get graded on our performance. We just do it. You are doing what has to be done and probably just need to find some rest. Exhaustion truly messes up the mind.

This, too, shall pass but it's the time until it does that wears you out. My heart goes out to you and if I lived closer than CT, I would drive over there and lend a hand. (First a hug, tho.)
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Comment edited on: 9/2/2010 1:00:03 PM

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LINDAKAY228 9/2/2010 12:26PM

    It's totally understandable why you would rather have him the hospital, where you feel he is being watched over and is safer and can get help quicker in an emergency and also get the inpatient stuff done than to take him home, wait, and try to keep a crisis from happening. Don't be so hard on yourself. I would feel the same way. I did caregiving for my mom for several years, and the last year was especially hard. Caregiving takes a LOT out of the caregiver. You are not being whiny or selfish or anything else negative.
In the meantime we'll keep praying for you and your family. Hang in there. When it seems the darkest remember there will be a light again. And when it happens, it will probably take you a little by surprise to see the light again.

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SHERYLDS 9/2/2010 11:53AM

    Hang in there my friend. I will be keeping you both in my thoughts. emoticon

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    My comment update....

"This sounds horribly whiny and selfish, doesn't it?"

My Lord lady, this is not horrible, whiny NOR selfish! You cannot be wonder woman 24/7 for a man who will do as he pleases without standing up for yourself once in a while. You are loving, giving and insightful.

Trying to be all things PLUS absolutely selfless at the same time is expecting the impossible.

I can't imagine you calling anyone else in your situation "horribly whiny and selfish", please, please don't call yourself that. Try to be as nice to yourself as you would be any stranger on the street or any new person here on spark people. You deserve this at the very, very least.

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HIPPICHICK1 9/2/2010 10:55AM

    Darlin' you sound like you have it together and I am impressed! I'm so happy to hear he is getting the care he needs by qualified people who will take good care of him.
I'm glad that your daughter is home for support and to keep home fires burning, as you said. We all need that sense of comfort in time of crisis.
Brightest Blessings, Love and Light to you and yours.

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JANEDOE12345 9/2/2010 9:56AM

    You and your family need lots of positive vibes sent your way. What a trying time for you all! It is good to see you so down to earth about your situation: You are being honest about your feelings of relief, maybe because he is in a 24/7 care set-up. I hope things are resolved quickly with a shiny new liver and that your DH is soon back to strapping good health.

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C11ELF16 9/2/2010 9:23AM

    Sending BEST wishes for hubby to be better soon and for the transplant to go well. Take Care of yourself too while going through all this. ((HUGS))

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    Oh Sweetpea, my heart goes out to you and your husband. I can't tell you how much I think of the two of you and your journey.

Please try very hard to keep strong for both of you... water, nutrition, sleep - both of you need for you to stay the solid pillar of wonderfulness that you are. I trust there are friends there who are caring for you as you care for him.

Know the world is full of sparkie friends who love you.
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2BMYOWN 9/2/2010 8:56AM

    Put you, hubby, and family at the top of my online prayer support group. Please keep us posted, am so sorry to see what you all are going thru. God bless and hugs.... emoticon

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We now return you to our regular programming.

Friday, August 27, 2010

I'm adjusting. Husband on the liver transplant list is becoming the new "normal", and I've talked daughter #1 into working only three days a week so she can give me a hand around the house and farm - there's too much work for one person, and if I have to pay someone, it may as well be my daughter as some local yahoo (forgive me.)

So today I spent a l-o-n-g day of serious cleaning - I totally love that mop thingee that you plug in and it emits steam!! - and I made some real progress. Even cleaned the kitchen enough to make some potato-leek soup with our own veggies.

At the end of today, I downloaded my BodyMedia armband data and entered it in the appropriate SP places - I haven't done that in a week, and it feels good to be back to paying attention. Even if I don't change my activity or diet, just entering the data keeps me aware of my goals.

I spent an hour (actually, closer to two hours) catching up with Spark Buddies' doings and team activities, and came up with a couple new ideas to jumpstart my program without making all that many changes. Sadly, I've determined that my foot just isn't ready to cooperate with the C25K quite yet, but I haven't given up that goal - just postponed it until I do a bit more healing.

I've always dealt with adversity by making A Plan - any plan, even a silly, unrealistic one, is enough to give me some comfort and change my focus. Also, I know that I feel best when I have a project that I can dig into, preferably literally - heavy physical labor, indoors or out, balances my tendency to live too much in my head. Also, that delicious tiredness at the end of the day ... even the occasional sore muscle ... there's no substitute for honest labor.

So I've make a couple plans, for myself and my weight goals, for my house, my business, my farm, my husband - you name it, I've got it laid out, and I feel much better for it. I've shaped my eyebrows and flossed my teeth. I've got my armband, my week's worth of menus, and my shopping list, and my day-planner with Time For Myself written in in ink! Yep, I'm ready to resume living my life!

  Member Comments About This Blog Post:

PENNYAN45 8/31/2010 9:07PM

    I admire the way you approach problems - honestly and head on. I am also a list maker and a planner. It is a real help to take charge of some part of our lives when we are dealing with something over which we have no control.

I am sending good thoughts and wishes your way - for you and for your husband.


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VICIOUS421 8/30/2010 4:11PM


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THE_SILVER_OWL 8/30/2010 2:12PM

    I love that you have a plan and are getting some much needed help as well...

Stay positive and strong my owl friend!!!


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LAGREBE 8/29/2010 11:32AM

    Terrific! You seem to have it all under control!

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SLIMLILA 8/29/2010 12:20AM

    I used to think I was a planner too, but for some reason my mind and body are just not cooperating with me right now. You new attitude sounds wonderful, can it be contagious? Tomorrow will be the end of my first day with no dh or around and I can't say as I've made anywhere near the progress I was expecting... and school starts on Weds..... ooooooh.......

I have focused this week on watching what I eat and taking the sleeping pills as recommended by dr., so that has shown a success on the scale if nothing else..... now, I have to focus on having a healthy lunch ready to take to school with me..... always a challenge....

Anyway, wanted to stop and say Hi and see what you're up too.. You have a lot of challenges and I hope your new attitude and family support help lower your stress levels too....

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RUSSELLORAMA 8/28/2010 11:21AM

    Great plan! You are really getting a lot done.


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LUNADRAGON 8/28/2010 10:19AM

    I admire you for your tenacity. When adversity hits, I like lists too. It is something controllable when things seem out of control. It shows you what you can and have accomplished. Keep up the great work, and my prayers are with you.
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SUZYMOBILE 8/28/2010 9:17AM

    Love that positive attitude! You're right. I, too, have always dealt with adversity by rolling up my sleeves and throwing myself headlong into something or other! (Mind you, I'm not so sure it would be yardwork or housework--probably more mental and exercise related.)

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JANEDOE12345 8/28/2010 9:07AM

    I am picturing a runner, crouched over the starting block. Ready, set, GO!

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STARLASUE 8/28/2010 7:13AM

    emoticon emoticon

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SHERYLDS 8/28/2010 3:17AM

    I think you have a great attitude considering everything your facing. Take control of what you can so you can handle the tough stuff with a better frame of mind. I'm keeping you both in my thoughts. Hang in there

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HIPPICHICK1 8/27/2010 10:25PM

    Wow. I am amazed at what you have accomplished and your new attitude. SUPER!!!!
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MORTICIAADDAMS 8/27/2010 10:15PM

    I love the way you think. I'm a planner too. And I crave physical activity.

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My favorite Satchel Paige quote

Thursday, August 26, 2010

Satchel Paige is one of my heroes, and I don't even like baseball.

Among his many wise (and wise-ass) remarks was, "Just keep runnin'. Don't look back. Something might be gainin' on ya."

So today, while I try to wrap my mind around what' going on in my life in general, I asked my dearest friend Katrina to do a reading for me. In part, it read:

Outcome is The Star - Set a goal and work toward it, letting nothing distract you from the outcome. Don't worry about how you're going to get from here to there. Set the goal and start walking. If you are going from Virginia to California, all you really have to know is that California is West and keep walking West. You'll get there. It's nice to know about the terrain and climate of the states in between, but really, the main idea is to just keep walking in the direction of where you know the goal lies, even if you don't know anything about the journey in between. By all means, walk. You don't have time to sit still.

So maybe I ought to get on this weight-loss-and-health-gain thing. I admit I've been doggin' it for a long damn time, paying lip service to The Cause and wearing the BodyMedia arm band and logging the data, but not really putting my heart into it (literally or figuratively.)

Tonight, honestly, it just seems like one more thing I have to put on the To Do list. But there's always tomorrow. And tomorrow is another day. (That's not Satchel, that's Scarlett O'Hara - but she had the right idea there.)

And now, before I inadvertently invoke any other quote-worthy folks, I'm calling it a day.

  Member Comments About This Blog Post:

VICIOUS421 8/30/2010 4:10PM

    emoticon emoticon

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LUNADRAGON 8/28/2010 10:20AM

    Thank you for sharing these wonderful and very positive thoughts.

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SHERYLDS 8/27/2010 12:04PM

    If I'm walking from Virginia to California, I need to keep walking West and I need a map of all the rest rooms emoticon

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JOYOUS01 8/27/2010 11:48AM

    I like Satchel Paige quotes too! emoticon

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STARLASUE 8/27/2010 6:49AM

    Baby steps. You can do it. Keep on keeping on.

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LADYJEXIE 8/26/2010 8:35PM

    "If you are going from Virginia to California, all you really have to know
is that California is West and keep walking West. "

It is really that simple isn't it.

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SUZYMOBILE 8/26/2010 8:31PM

    Katrina has a very cool website! She reads the tarot for you, yes? The Sun is a fabulous card to get, too--much better than the dang Tower. I used to do tarot and astrological readings, but had to refer to a book every time. Still, it was always eerie how appropriate the readings turned out!

I'm all for goals, too. Me, I feel a little directionless lately, with no strong goals in mind other than just maintaining and getting my legs fitter. Seems like I ought to have something more ambitious in mind, but I guess it will come when it will come.


Comment edited on: 8/26/2010 8:31:41 PM

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    I keep walking. I figure by now I should have made it at least around the world. LOL.

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General update (OT)

Wednesday, August 25, 2010

Some of my SparkFriends know a little of my backstory with my husband and his health challenges, most don't. If you're interested, here's the short version:

John was in a car accident a bunch of years ago - punctured his spleen, lost more than half his blood volume and had to have multiple transfusions. Unfortunately, he did this on the "wrong" side of town, where St. I-forget-who Hospital used to buy blood by the pint from whoever was willing to sell it - usually not the best, healthiest folks. Anyway, he got a transfusion that was tainted (at least this is the best guess we can make) and, twenty years later, was diagnosed with Hepatitis C.

Still, he stayed healthy (and meanwhile developed back problems so complicated that his Xrays are featured in a couple of textbooks now) for another decade or so. He was offered the Interferon/Ribaviron treatment, but for many reasons (mostly a very low long term success rate for his genotype, after a long and very painful treatment) did not take it. Last summer he started getting some edema in his legs, and it's been steadily downhill from there.

I'll spare you the details, but he got connected to an internationally respected doctor at Mt. Sinai in NYC. We saw him in March, and he was fairly positive - gave John a different main diagnosis (cirrhosis, yes, but caused largely by Non-Alcoholic Fatty Liver Disease, rather than Hepatitis C - which he still has, of course), a different treatment protocol, and a different - positive - prognosis.

John's been having more and more problems, largely with the edema in the legs and ascites (fluid build-up in the abdomen), but also some hepatic encephalopathy (cognitive problems due to liver disease) and feeeling worse and worse. It's slow, but progressive. So we went back to NYC and saw the doctor again. This time he looked at him, prodded a little and suggested he be evaluated for a liver transplant immediately (in Rochester, though - closer to home and with a better chance of finding a donor.)

So that's where we are now. I haven't given up - not by a long shot - on either my husband or myself, but I may not be around much, and if I am, it may be sort of hit-and-miss. I have a huge amount of house and farm stuff to deal with (especially with hay to get in and winter to prepare for) and now have to be especially supportive of my husband, and ready to do whatever he needs done. A positive side of having to take better care of his needs is that his diet is moderately high protein (100 gms/day), lower carb (and only "quality" carbs) with little sugar and just about no salt - exactly what I need to lose weight.

I'm willing to shelve most of my artistic pursuits for the time being, like writing my book(s) but I can't devote myself 100% to the care of someone else. I almost wish I could, but I'm just not made that way. I need some alone time to read or walk or draw or just sit. Doing morning, noon and night for someone else will make me crazy, and then I can't help either of us. So Im trying to find that balance. And to manage ... eh, difficult to explain, but I get so upset with him sometimes, so angry, but then I realize how ill he is, and feel so terribly guilty and sad, and that doesn't help either.

I'm so very tired of tightropes and eggshells, but that seems to be what's underfoot at the moment. Wish me luck, kids.

  Member Comments About This Blog Post:

VICIOUS421 8/30/2010 4:09PM

    emoticon I understand what you are saying.
Much luck & emoticon

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THE_SILVER_OWL 8/30/2010 2:03PM

    Someone wisely told me recently that it is harder on the person doing the care giving than on the patient going through the "disease".

The caregivers are sometimes over whelmed with more than they can handle, feel helpless to actually "help" the person when they are in crisis, and are often not given as much support by others as the patient is.

Please know that you are appreciated and doing a job that is beyond invaluable. May your days be easier, your burden lightened and may you get the love and support you need along this journey.

Prayers going out for you and John...


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LUNADRAGON 8/28/2010 10:26AM

    Karen, my prayers are definitely with you, and for your husband to receive the treatment he needs.
As for you, you are inspiring. Keep it up. I have been where you are with a very sick husband, and it is not easy. Keep up taking care of you because that is critical and crucial.
It is ok to pencil in a little creative down time. It really is essential to have some "me" time. These blogs are fabulous ways to be practice writing. I consider this type of writing "Sketching" akin to pencil sketching for paintings, etc.

Remember: When you fly on a plane, you are always instructed to get oxygen for yourself before you help someone else.

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STARLASUE 8/27/2010 6:56AM

    Karen, do remember to care for yourself during these difficult times. Your writing is an important creative outlet for you that can cleanse and harmonize your system. Honor that and give yourself permission to carve time out for it.

The only way to have enough energy to be a caregiver for someone else is to practice good self-care.

Sending you & hubby healing energy and praying all will work out for your highest good.

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SUZYMOBILE 8/26/2010 1:53PM

    Karen, I've been thinking about your blog ever since I read it. What shone out of it was total honesty about your feelings--with yourself and with us. Maybe your husband isn't the best of patients either, which doesn't help. Still, you should strive NOT to feel guilty for wanting a little time for your own pursuits. You have to take care of yourself, or you'll be no good to him when you need to be. Can you get someone in to help with the caregiving, or would he resist that idea?

I'm not a big pray-er, but know that I'm thinking of you and sending good vibes your way for a liver to become available soon.

Meanwhile, be strong, SparkFriend, and lean on all of us as much as you need to!

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BORNAGAINBRAT 8/26/2010 1:51PM

    Maybe saint was not the right word. She did have a meltdown or two. Hospice is amazing!

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BORNAGAINBRAT 8/26/2010 12:41PM

    We just lost my dad after 15 years of pain and doctors. My mother is a saint but she still had hospice come in and help and of course I helped as best I could. I can only imagine what you and my mother are/have gone through. One day at a time, sometimes one hour at a time. My prayers are with you and your husband. May that liver come soon. God bless.

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TIME2FINDMYSELF 8/26/2010 12:23PM

    When those frustrated feelings hit, just remember that your husband is probably just as frustrated to ask you for so much and not to be able to do the things he used to. When my Dad got sick (pancreatic cancer), he spiralled quickly into a place where he needed help to do the simplest things, and he hated to ask anyone. It would be good for both of you to talk about it. I am sure you'll see that you have similar views on the stress of the situation. emoticon

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JRSWHIMSY 8/26/2010 11:52AM

    My late stepmother spent a lot of time on the donor list (double-lung transplant, much trickier) so I can imagine some of what you're going through. I also understand you not being able to devote yourself wholly to someone else, and I hope your husband does too. Be sure to find that important time for yourself. Care giving is such a difficult thing and can be such a strain and drain. You have many people behind you, many have gone through this before, and you are not alone. *hugs*

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HIPPICHICK1 8/26/2010 10:02AM

    I didn't know the back story, so thanks for that.

It sounds like you need to call in someone to help out. I'm not "nurse" material either so completely understand your need to have alone time and to do things for yourself.

I once read this article about Christopher Reeve and his wife Dana who tried to be his nurse, but his condition was such that she was simply unable to be that nurse and was told she never should have even entertained the thought, but she was advised to hire a professional to care for Christopher. I would suggest that you do the same.

I'm praying for a way for this to happen for you as not everyone can afford to hire a medical professional to care for one in need.


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MORTICIAADDAMS 8/25/2010 10:56PM

    What you are feeling is normal when you end up as a care giver to someone so ill. You NEED time to yourself. I am praying for you and your husband to have a good outcome to this ordeal. I am around if you need me. Take care of yourself as well as hubby.

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