Pity Party coming on!

[Barbie]

Group hug...I think we all need one today!

 

[Wildemom]

I second the group hug! Feeling exhausted over trying to decide if Medicare is primary or if his former employers insurance is and am getting the complete run around. I cannot understand usually no one wants to pay and now they both want to be first! Why must there be an issue everyday? You know I feel like it is enough for someone to have to deal with ALS and the side effects of the disease but it is all the extra that gets you down! I look forward to the brief bits of happiness but they are far and few between! Well that is off my chest, now I must move forward!

 

[Santa joe]

Group hug indeed! Thanks Barbie I needed that.

Debbie

 

[Santa joe]

Wildemom- you are so right about all the other things we have to deal with. It is my understanding in SC that Medicare is primary and your other insurance is secondary. I'm sure all insurances and states must be different. I have folders set up with different things I have to deal with. If your Pals goes into the hospital you almost have to. Staying organized is the key. Didn't think I would rely on my administrative assistant skills again but here I am. Who in the world has time or energy to stay on the phone getting things straight. Wish I could help.

Debbie

 

[celticgirl]

Sending love to all our brave PALS & CALS, this disease is truly heartbreaking. I had a fall at home, spent yesterday at hospital getting x rays etc, no broken bones thankfully but have torn ligaments and nerve damage in my ankle, feeling sorry for myself, soo painful!

 

[zoohouse]

Sending love to all our brave PALS & CALS, this disease is truly heartbreaking. I had a fall at home, spent yesterday at hospital getting x rays etc, no broken bones thankfully but have torn ligaments and nerve damage in my ankle, feeling sorry for myself, soo painful!

I'm sorry about the fall, and the injuries and that you heal quickly. Please do what ever it takes to prevent the next fall. I know it is hard to give up your independence, but injuries can speed this disease up. I know you know all of that, but I had to say it anyway. I can't get the image of my husband falling out of my head, and feel it is much worse than watching him with a walker, or even in a wheelchair. For what it is worth.

Paulette

 

[zoohouse]

Have to say I am having a bad night. Most of the time I can go along living like Tim has a disability rather than a progressive disease, but the last week has slapped me up side the head. He is his usual cheerful non-complaining self, but I have noticed the increased fatigue, and shortness of breath. He had his PEG tube changed to the MIC Key and all went so well, and it is so much less obtrusive and easier to use. I guess tonight was hard because his feet are puffy inspire of the fact that we have kept them up, and I have done physic. But worse than that they mottle so easily, and his nail beds show cyanosis (lack of oxygen) when I shower him, or have to transfer him from chair to bed without his breathing support.

Maybe I'm just tired, but I am so emotional tonight. I have had a lot of losses in my life, and kind of hoped that it would get easier, but it is NOT! I know that he not going to die right away, but these things are making it hard for me to pretend. I know you all know what I am talking about, and inspire of the difficulties of dealing with this disease, it is nothing compared to losing the person you love. Sorry about being a baby, I just had to get it out.
Paulette

 

[affected]

You are FAR from a baby Paulette.

I do the same, kind of bumble along 'doing', and the more I can do the more I can do.

Then something will happen, something small and it is like I suddenly see my husband 'really', and I am overwhelmed all over again by what is going on and where he is at with his progression. It's the most awful, soul wrenching feeling.

We are having all the same issues - hands and feet swell, cyanosis, increased heat especially in his hands, the mottling often runs up the back of his ankles, fatigue, night breathing is frightening to watch, and it just keeps going inexorably downhill each day.

No matter how bright, cheerful and positive I am, the facts are crap and I hate that slap to the head.

Another group hug must be in order ... bartender, send one big group hug to the table babbling incoherently in the corner, FAST!

 

[minnesota]

Hugs all around--Barbie led the way! My pals use to say (from the movie hitch when Will Smith shows Kevin James how to lean in for a kiss) "I'll go 10% for a hug you'll have to come 90%)! Now I go 100% and tease him that he better be ready! 100% for you all as well! Especially when you're so exhausted you might want someone to throw their arms around ya!

Celticgirl sorry about the fall! Ugh no good! Rest and heal!

I am pretty organized but Debbie I have to get all the file papers in order in case there's a hosp run--I'll msg u!

So many details to cover while enjoying the moments with our pals that capture a memory!

 

[Santa joe]

Bartender hugs and drinks to this table-we need it! I was telling my pals doctor about the emotions I have been feeling over the last couple of years. He asked why I didn't mention denial as one. I told him about loosing my stepfather to this disease. I knew Joe had ALS before anyone else. Just a gut feeling. There is no words to describe watching you loose a little bit of your CALS everyday. Watching it 24/7 is heartbreaking. We are all tired and overwhelmed and for me that is the worse time. So glad we have one another to lean on. I know how this is going to end-just don't know when.

I remember when Joe fell the first time. We were out of town and I sat on the floor next to him and cried like a baby. He feel again a couple of days later. Went into the hospital 2 weeks layer for ventilator and peg procedure, bedridden ever since. Didn't see that coming. Be careful Celticgirl. Hope you rest and recover from your fall.

Love and hugs to everyone!
Debbie

My CNA called out sick this morning. Agency was going to send someone else over - pals shaking his head NO. No bath today. What a way to start off the morning.

 

[celticgirl]

Thanks Paulette, Minnesota and Santa Joe for your kind words. I won't be walking again without my partner or my daughter beside me! too risky and bloody scary! We all could use those big group hugs not to mention a drink from the bar take care everyone, love and hugs, Anne xx

 

[SMP51]

Paulette and Debbie, I fell down the rabbit hole today too. New shower chair, unackceptable changes and not doing things differently, pain and tears from us both
no shower today, time to breath and re evaluate and dig out of this dam hole

*BIG SIGH*

 

[Janie H]

My medicare started this month and since I get 1400 a month, SC says they are dropping my medicaid, now I have to figure out a supplement policy that will pay everything that medicare won't, I already have too many dr bills to pay. My mortgage is 800 a month.

 

[barneyswife]

Thanks for all of the rounds of hugs, I know we all enjoyed them!
We had another nightmare day yesterday!
We have a sick bull, he swallowed something metal and the vet called it hardware. (This was a week ago) So everyday we go out and give him a shot and love him up and stimulate his appetite with cob grain (equivalent to our chocolate) The last few days Barney had been spending extra time rubbing and talking to him so I came into the house to get the smoothie going. Smoothie was finished and in comes Barney really mad and just hollering and pounding his fist. He had gone into a calving pen and fell down, mommy cow was terrified something was going to happen to her calf so she charged him and hit him on the abdominal area approx. 4 times. apparently he just tried to roll out of the way and went under the pen gate.
He took off his hat and my goodness blood and big lumps forming, superficial cuts and scraps on head, face, shoulders, arm, rear, knees, and calves.
I started to clean him up to evaluate and my girl friend arrived and she took one side and I got the other. I phoned his specialist and she told me to phone the ambulance. The first responders arrived, then the ambulance. The ambulance wanted to take us to one town and I had to be forceful and say No, we are going to Kamloops that is where the specialist is and she has already ordered tests to be done there! After a little more persistence I won and we went to Kamloops. We get to Kamloops and the Emergency Dr. had decided to do it his way with only a portable ultra-sound machine, I asked him to phone the specialist as she had some specific tests she wanted done. The nurse informed us that that was not going to happen. So I phoned the specialist myself and low and behold if ten minutes later there was a total change of plans on the testing to be done!
Barney was 100% fine with the exception of all of his lumps, bumps, scrapes and bruises. He is very stiff and sore today and apparently will be in bad shape for awhile yet.
Our one nephew came and did all the chores this morning including the shot for the bull and tagged the newest calves. Our nephew that has helped us in every way possible all along will be here to do the chores for the next little while.
We got very lucky, but I also learned a very valuable lesson. Somebody has to be with Barney all of the time now!
I am so flipping tired so I am also ordering a round of hugs, chocolate, wine and heaps of ice-cream!
Hugs
Linda

 

[Santa joe]

Linda so sorry sweetie, sounds like a horrible time and glad your Barney was not injured more seriously. I know that scared the crap out of you. Glad you had on your "B" panties on. I like being nice and polite but if that doesn't work, I can turn into a "B" in a heartbeat. Who else is going to stand up for our pals? So glad you have help.

Hang in there girl. Someone told me yesterday "The sun will shine again for you". I want to know when.

Debbie