Your Rant and Raving page, unload your feelings

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MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,544
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Since so many people feel better after letting off some steam, thought I would start a thread where you can complain, gripe, rave, whatever.
That way if people do not want to read negative comments, they can go to another thread.
OK get it off your chest and let the griping commence.
Darn
Dabnabit
Those dummies
Don't you just hate it when ................................

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Capt. AL, we already have that thread in the heading OFF TOPICS but maybe we do need two to let it all hang out :] Love your little crabby Grandpa stomping his feet!
 
Dang nab it someone beat me to it again. Day late and a dollar short.
 
Does that qualify for a RANT? lolol I thought for sure I would see that little tantrum Gpa again :]
 
Release the flying monkeys and see if Grandpa can catch them, lol
 
Only if you PROMISE not to extinguish their cigarettes!
 
My turn to let off some steam:
Where do I start.
Saw the Doctor at the VA Friday with the following complains:
foot swelling very badly
Toe nails falling off
Cather leaking
Bladder spasms
Spine locking up with pain
Knees hurting very bad even though I cannot move them
Have double vision in right eye
Pressure sores on rear end getting worse
Need better cushion in wheelchair
Bi-pap died and need replacing

He looked me straight in the eye and said 4 times,
"And what are YOU doing to help resolve your problems?"

Then had the nerve to say I was too fat
and how could I expect to get any of these problems fixed if I did not get serious about losing weight.:evil::twisted::evil:

I explained that should take care of itself since I can no longer lift a spoon to my mouth and I had lost over 26 lbs in past year.
He obviously has no idea about ALS and it's progression. I felt like running over him with my wheelchair.

The main problem with this is he is my VA Doctor and if I say or do the wrong thing he knows he can screw my case up big time. God complex for real. I could just scream at how some Doctors never listen to what you are saying.
 
OH! THIS MAKES ME SO D--n MAD! The MONKEY'S are flying and will put duct tape over his mouth so that no one can hear his screams as they pluck out every hair on his body INCLUDING his eyelashes and his p&&%c hairs! argggg Can you speak to the Social Worker and be assigned another Dr.? [I bet he is short and has the little man complex!] What are you doing for wound care on the pressure sores? How can we HELP? hugs, Kay Marie
 
That's terrible Capt Al! My rant is really minor in comparison, my wife is always worried if I put on weight too. I imagine she pictures the difficulty lugging around my swollen, obese frame once I can't move. Actually I'm only a little heavy, my BMI is 25-26, just barely in the "overweight" range. I had been putting on weight but it's leveled off. They say it's better to have a little extra weight and not lose it. When the nutritionist recommended I put butter on everything at my last clinic appointment I could sense my wife's shock. Butter has been on the evil list for so long, it's hard for her to adjust. I figure I probably only have a year or so of eating left, maybe less, so I want to enjoy it while I can.

I know everybody says, oh, it's no problem, you can just chew your food and spit it out, but that's another rant. It's not easy to adjust to what we are going to be dealing with down the line. It's been 5 months for me since diagnosis. It is what it is, I just have to deal. But it's still hard knowing what is head, reading here how cheerfully people handle all these horrible sounding things. It doesn't help that I am kind of squeamish and uncomfortable with all these bodily functions.

Well what else, since I am on a roll. I only recently realized that power chairs cost 20 or 30 thousand dollars! And my Blue Cross has a maximum 5 thousand per year for DME (durable medical equipment). That means the insurance is going to be useless for this. How can they cost that much? I guess Medicare would pay more, but I am still working, for 2 reasons. First I am not disabled enough to not be able to work, since I do software. Even once I need a wheelchair I would still be able to work. So unless my hands go before my legs, I will need a chair before I am on Medicare. And 2nd, my wife needs insurance, and she is too young for Medicare. So we are planning to do Cobra once I stop working, and that is only good for 3 years (plus it's $1000 a month). I don't know what we will do for her after that, we are hoping Obamacare will work for her. But I want to postpone quitting as long as possible to get that benefit.

Now I can't complain too too much on this, because even though our health insurance is not great, I do have long term disability insurance through work that looks really good if everything is like they say. That will help a lot with expenses. But still it feels overwhelming wondering how we will deal with everything. Then once I do get a power chair, how do we transport it. That is another huge expense that we won't get any help with. At this point the plan is to look for used items. We all know how often those come on the market unfortunately. Even if you buy equipment, with ALS you are more borrowing it. Lots of hand me downs in the community.

Enough rantage, thanks for the opportunity!
 
How did you know?
Yes he is a very short man, about 5 ft. 5inches, and I am 6 foot tall.
Must be ^@^#$@ envy. :lol:
Trying to get a wound care specialist to take a look at my problem area. My that is embarrassing.
 
Al, we are just beginning the VA maze. The Pulmo doctor gave us his cell # so we can call him direct if we have any breathing issues so we do not have to wait. We can also go to urgent care to have issues taken care of right away. The primary does not want to see us that often, so we make an appt to see the nurse each month. Whenever we go to VA, I have a list and give them a copy of it, then I update it when we get home as to how each issue was resolved(or not!) My husbands blood sugar is a bit high, so was told to cut out sugars until I explained how important keeping weight on was, and she said not to worry about it then. Sometimes they just do not know. HUGS Lori
 
Hal, when you speak about butter, you're talking my language! I love butter and smother it on my morning poptarts, toast, waffles, you name it!

I liked the commercial from a while back where the butter company touted the slogan: "We'll never claim butter tastes like margarine!"

I loathe things that profess to look and taste like butter because quite simply, they never get very close (imo); at least not close enough to satisfy me.

I also don't like to see folk without a handicap parking in a spot reserved for those with one.

I really don't like the guy that lives around the corner who loves to ride around the neighborhood with his car stereo cranking out 200 decibels, producing a sound so loud it makes my liver vibrate. The word, "stealth" is not in his vocabulary!

PZ
 
Hal, by all means eat whatever you enjoy because yes keeping your weight up is much better than gaining it back after you get a PEG. My dad had lost 20 pounds before his feeding tube and gained it back after he got the PEG, but all the weight went to his belly because he couldn't walk anymore.

Capt. Al, your VA doctor is AWFUL! I am so angry that he talked to you that way! Makes my blood boil. I have an Italian temper and it's a good thing I wasn't there. What a jerk! Nobody calls our Capt. Al fat! Kay Marie, I think you should starve the monkeys for a few days before you send them over so they are nice and hungry!

My only rant today is that I hate ALS! I just hate it and I hate when people I care about like my sweet dad and Capt. Al have pain! I hate pain and I hate ALS today and every day hereafter. :-x
 
Capt. Al, that is outrageous. Ignorance of ALS is no excuse when doctors are playing God. Doesn't he know that when your muscles are disappearing, the only way to keep weight on is by putting on fat? And that's what helps keep us alive?

Those are all serious problems, and he should deal with them. You must be in so much pain and discomfort! I hope you got some treatment plan from him.

If every doctor/neurologist could spend a day inside our bodies, they would become totally different human beings.

Blessings, Al ...
 
I hate that I can't sleep, or even lay flat for long without the bi-pap anymore. Lately, when I've been in bed alone, with no one to scold me, I've tried (out of rebelliousness) to sleep without it, and I have to give up after a while and put it on. I, the Queen of denial, liked believing the bi-pap was optional. :evil:

AND I thought the voice amplifier would be a Solve All device. It makes me audible, which is great, but it still tires me out to talk.


.... I too like butter :)
 
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