23 replies to this topic

[Saneaj]

Roller Coaster from Hell

One day you're up. The next day you're down. The next hour you're in. The next hour you're out.

One minute your hanging on for dear life hoping that this ride ends soon.
The next minute there's no more loop da loops and you're able to handle the wind.

Life...Death...Pain...Hyperreflexia...Life..Death...Pain...Autonomic Dysfunction

So many loops and curves, twists and turns, tossin' my cookies as I hang over the rail...

Good grief... is this life or just survival...

I know that everyone here can relate....

[Tetracyclone]

Get with the New Normal.

Let it shake loose your mind from its useless moorings of society's agreements about what life should be like.

Let it uncover your deepest fears and longings.

Let it scrub you clean.

[SandieT]

Just hang on tight and take a deep breath!

BIG hug

[snowqueeneh]

That pretty much sums up my profile. I feel the same way. It's so extreame that I just have to laugh sometimes. It's like PMS x 1000! All I can tell you is that I really try to feel the "up" moments for all it's worth. I try to get every litte drop out of it before I feel down again. By that I mean I plan things to do and really try to stretch it out as far as it can go. But those down moments sneak up on me... making me realize what happend all over again.

I read this post last night and then I talked to Paul about it. He said that I was the same way before his injury (just not to this extent). I think he's right. I always sort of became moody every once in a while. He said that now when I feel that way I blame it on SCI. I think there is some truth in his logic. Perhaps I do blame SCI for everything now. I am going to think about this for a while and see if it helps slow my rollar coaster down.

So... I second what "Sandie T" posted.

Life and survival come hand and hand - but living is a whole other thing. I say try to live as much as you can during your "up" moments.

[Saneaj]

My hubby has told me that he thinks its time for him to go into a home. Some of my friends called last night and had sort of like a phone intervention. He is afraid that I'm getting too worn out and too torn up. My chest is not healing with all of the pulling that I have to do while he is in bed. I've ended up hurting time and time again and last night was just awful. I ended up on the floor in so much pain that all I could do was lay there and cry.

I begged him not to go. I just can't lose him to a home just yet. I'm not mentally ready for this. Everyone keeps telling me that if he goes into a home that they won't give him the care that I do and that he will die pretty quick. They all tell me that the only reason he's alive is because of me. Their words are just tooo much for me to have on my shoulders. I feel like I'm drowning.

I don't know what we are going to do. We are only taking it one hour at a time right now. I'm also staying away from the phone because I'm tired of people who have no clue of what I am going through try to tell me what I am supposed to do with my husband. Life is hard enough right now without their input.

[SandieT]

Oh Saneaj I wish there was something I could do or say to make it all better, but I know there isn't. You must do what is right for both of you, it must be a joint decision, and maybe the time has come to listen to your husband and your poor tired body.
Maybe he could go the the home just for a couple of days to begin with and then be with you for a few days, that way its not quite so drastic all in one go. What do I know? But just a thought.
My heart goes out to you both.

[airart1]

u just need to get him some help and quit doing it all yourself, medicare should pay for someone.......

[greybeard]

Like SandieT I just wish there was something I could say or do to help, but I know there isn't.

Could you perhaps arrange a short respite care break somewhere. In the UK there are many care homes that offer short breaks but I have no idea what the situation is there.

Thinking about you both.
Geoff

[Saneaj]

To airat1... All we qualify for is 3 one hour visits per month for spider wound care... we don't qualify beyond that.... too tired and moody to explain... so you'll just have to take it at face value.

To Sandy and Geoff... thank you. It seems to be taking my forever to type this out so if there are booboos please forgive me...k...

Ended up collapseing four times today. The four one coulnt get up. Had to call for help. Not doing so good. Very skaking inside. So very tired. I thought that my hubby would've called for nusing home assistance while I was down but for some erason he did not. So now we have to wait till Monday. But frineds came today and told me that it is ti eme. Goin g to go to sleep now. Hopelully on ;my next post htings will be better. Please keep us in your paryaers.

Sheri

[Tetracyclone]

Saneaj,

Somehow I had missed how sick you are, girl. So words are stupid, but i will keep both of you in my prayers.

I HAD MY DAD IN A NURSING HOME FOR 7 MONTHS IN 2007. Stupid cap lock. I went in every morning to do ROM for him, then stayed til early afternoon. Back in the evening to have dinner with him and keep his world like always. More ROM, then to bed. That way I was only there 8 hours a day and let others take care of him the rest of the time. Night shift were slackers so I always washed his bum in the morning. Worked out, at least for us, and I sprung him in December. Thankfully it worked for us.

I'm thinking of you sleeping...

Pat

[airart1]

it says your in tn, a guy i know, i won't call him a friend anymore, cause he's an a-hole, but he has medicaid/medicare, and he has a nurse come in everyday and get him up and bath him and dresses him cause he won't do anything for himself, and his bowl routine every other day at a precise time even on the weekends, so i was just implying there are options for help........take it as u will, i don't know your situation, u don't explain that part of your problems..........if he's to much for u to handle or whatever, put him in a nursing home and be done with it..............cruel, but just a fact..............

[Saneaj]

Airat1

Your aquaintance in TN was very lucky to be on Medicaid. My husband does not qualify. We talked with people early today and due to his extremely structured settlement that was set up many years ago hinders us from so much. In 7 years when it is depleated, he will qualify for almost everything available... but we have to wait 7 years for that to take place. We can't even shift assets over to me or anyone else because they are attached to the this irrevocable trust. This trust was very beneficial years ago, but now is a huge noose around our necks. We have talked to everyone imaginable. He would get off the phone with one place and call another just to see if there was any chance of any help. God... I can't believe that I'm here having to defend our situation that we are in...

And there is no chance in the world that I would EVER just abandon him in an ER while he sits in his chair rotting until they finally decide that he was abandoned. Then he would be held there for 3 days, sent to a state run facility and our assets attacked. He would never allow that to happen to me and I would never allow that to happen to him. It's just that simple. We're still in love with each other and love doesn't abandon one's heart to the dogs.

Yes, IF he had Medicaid or it's called TennCare up here... he would get ALL kinds of benefits... all kinds of nursing... free nursing home... and the list goes on and on and on... But as it stands, he was told by several nursing homes today that our co-pay would be $154 PER DAY. And if it just a temporay stay until he heals from this bite... we would have to pay this amount UP FRONT! Who in the world has that! And if he were to go there permanently... our copay would then be $2500 per month. We barely clear that a month from both his trust allotments and what little I make as my company is stalled due to his condition. So we can't even afford that. They were really nice and tried very hard to help us... but they even told us that since he is considered 'stable' at this moment in time, even though he's bedridden for 20 hours a day and all, that the hospitals wouldn't even admit him for the three days that Medicare requires in order to get him transfered over to a nursing home. Believe me... we have realllllly been through it today. There is nothing for us to do except for me to suck it up and some how continue on.


There is no help for us. We have been told that we are in a grey area that no one covers due to this irrevocable trust of his. So... I've always been taught that when there is no earthly help available... look up... for that is where my help will come from. So... I'm looking up... and waiting on Him... for there is no other help for us.

I'm finding it fascinating how people will have all the answers to your particular problems.... and yet... their advice falls to shreads in the light of government agencies that tell us different...lol... Crazy ain't it...

So now I think that I have finally disclosed our situation thoroughly...we are now laid bare for all to see... I'm really in a mood tonight so please forgive my sarcasm... but I think that I answered your statement of 'u don't explain that part of your problems'... we don't fit the usual financial mold... so I hope I clarified things...

[airart1]

i didnt mean to offend, its a shame a trust no bigger than that keeps u from having any help, my mother works as a caregiver for the elderly privately and of course its from someone that can pay her, and her sister stays with a couple in Hopkinsville, Ky. that are financially able to pay for full time help being both are bed ridden, and i would think it would be deductible, but i do not qualify for medicaid either, there is no category for the disabled in a wheeelchair unless u have received ssi, 1 time, 1 check, but u have to receive ssi once, remember that, file for ssi first, but it does pay my co-pay for medicare so i can't complain, i was in the air force in the 80's after high school and that has been a blessing, the only thing i wish is i knew it 20 years ago, they pay for everything, chairs, supplies, anything that i need i can get........so God has blessed me in my retirement, i had retail stores for 17 years, so i was blessed to be an artist with my hands, i'm a para so i'm totally self sufficient, own all my stuff and property, not trying to blow my horn but i was very fortunate other than the love of my life couldn't deal with the chair and found her someone else that didnt have disabilities, after my accident we were married and the marriage only lasted 5 years, but alot of normal marriages don't last any longer, your husband is very fortunate that u still love him and can deal with his dissabilities, but i know alot of people that are quads that do alot for themselves, Donnie and Bart at Music City Medical in Murfreesboro are c-5 and they live by themselves and don't need any help at all, i don't know what to say but maybe u could have someone like my mom come in a couple days a week to just help with getting him up and showers, it wouldnt even have to be for a long time, that would be my only solution to your situation, but it does sound like u need some help before u put yourself in a mental institute or a chair yourself, and don't sweat the airing the laundry on these forums, we are all in the same position, we all have different problems and again we all have the same problems, so many solutions are available through knowledge on here........pleased to meet you, i meant no disrespect....maybe hospice, i know thats kinda of a end to life thing, but i don't know if a dr. could write a script to get hospice in a few days a week, just a thought...........whats scary is i really believe obama care is going to make it worse.............and sounds like u need a hoya lift pretty bad, it would save your back.........

[Saneaj]

Thank you... I hear your heart in this matter now and I can appreciate what you say.

My hubby is classified as a C-5 with brainstem residuals. So he is not a true C-5. He had crushed C2-C7.... so we have mulitple issues due to the brain stem injury. And he had crushed his right wrist severely, so he is unable to fully put weight on it or really use it in any meaningful way. That is where a lot of our problems lay... We do have a hoyer. It took the insurance company 9 years before they finally gave it to us so that is where a lot of my messed up muscle problems come from. And with him being in bed for 20 hours a day with this stupid bite... there's a lot of turning that he really isn't able to help with due to a shoulder surgery he had just a bit back.

We have a friend who is a 'true' C5 and he is pretty much self sufficient. But... we see it as my hubby being truly blessed with what he does have because he started out a C2 and it took a very long time for him to get to the place where he is at now. I know that it throws people when they look at my bio and see C5 and wonder why he isn't doing more for himself than what he does. But hopefully that should explain things a little better. And please excuse me as I tend to get very moody when very tired.

Our church is trying to step in more. After today, I think that they are seeing how truly scary things are for us right now. It was our church staff that came to my rescue earlier today when I was unable to get up. And they even offered to come out and help turn him and I am going to start taking them up on that. My hubby has been trying very hard to lose weight to make this easier on me. He's lost a whole spare tire...lol... He truly is an amazing man. I just love him so much and couldn't imagine life without him. He tries so hard to do as much as he can without my assistance and I surely don't baby him...lol... He's the love of my life and I'm having a very hard time dealing with things right now. But I know that God is in control and that He hasn't left us nor forsaken us... He still smiles down on us and I can almost feel His arms about me at times. So all will be good... no matter what happens... all will be good. Just a very tough ride right now and just needing to vent to people who truly understand what we are facing. There has to be an answer somewhere for us. And one day... if we search hard enough and wide enough... it will be revealed...

Sheri

And my hubby told me that I misunderstood him... He said that Medicare would NOT pay unless he went through the ER. And the ER won't admit him because he's currently stable... so I would have to abandon him there. So that wasn't a copay for those nursing home charges... that was full pay....which is what they told him the would expect. Please forgive me for getting things a bit jumlbed. I hope that I making sense...

Edited by Saneaj, 16 January 2010 - 06:42 PM.

[Saneaj]

I think that I'm to the point where I need to get off this thing... not that I'm to the point where I want to... just need to...

Had a talk with a counselor this morning. Had a very bad go of it last week. It all sort of came to a head. I ended up passing out in the bathroom. I fell between the toilet and the bathtub hitting my head on the water knob under the toilet. I was out for about 30 minutes and when I came to, I found myself wedged and it took about 5 minutes to free myself. No one ever knew that I was there. Scary. I didnt' go to the hospital at first... probably cuz I wasn't thinking right... I ended up collapsing again later that day and finally found a way to hospital later the next day. I have a mild concussion and acute exhaustion. Big surprise there...huh...

Yesterday I went to see my doctor. I collapsed as soon as I opened the van door. Had to go back to ER via ambulance. My blood pressure was soooo high. I thought that I was checking out this time... and actually had a peace about it. They sent me home which really upset my doctor. She wanted me to go to another hospital where she could admit me... but I was just too tired to try. She did give me something to sleep and that seems to have helped. But the dilemma still remains.... I'm either at or near the end of my rope. Only I can make this decision for myself. My hubby is soooooo upset. I really think that he is rather mad at me. He tells me that he isn't.... He tells me that he can see what I have been put through... but.... I still think that he's mad at me. I don't know what to do that would make all of this better. Truly I don't. My counselor told me that I can't physically handle this too much longer. And I realize that. She says that I need a plan... I also realize that... But I also don't want to make any decisions in haste. I want to take my time... check out our options... and pray, pray, pray... and oh yeah... pray some more...

I don't know if any of you had to come to this conclusion already... I'm talking to the ones that actually stuck with it. The ones who truly gave it a go over the course of many years... NOT the ones who took one look and decided 'no way... not in this lifetime'... I ONLY want to hear from the ones who TRULY understand me. Please don't be offended by this statement... for if you were ever in my shoes... you would feel the same way....

Just very pensive today....

Edited by Saneaj, 22 January 2010 - 06:34 PM.

[KeepTheFaith]

Have you considered cashing in your structured settlement? You obviously need money now. At the rate your going neither one of you is going to last another 7 years.

http://www.structuredsettlement.com/

[Saneaj]

I wish we could. But its attached to something called an irrevocable OBRA Special Needs Trust. It worked well before the reforms in 2000. But now... we're trapped. We did try... but we're told its impossible. Crazy...huh...

[KeepTheFaith]

I assume that you have consulted an attorney on this? There may be exceptions made for extreme circumstances like yours.

[Saneaj]

Yes...

[cheri0261]

My name is Cheri. My husband was injured 6 years ago and is a para. We live in Alabama. We moved here 3 years ago from WA state. If you don't mind my asking - where in Tenn. do you live? My husband fell out of shower chair a couple months ago and broke both legs
I was just thinking that my husband and I could come there to meet you and your husband and I could maybe help you out for a day maybe like 1 day week. It would give you a break from turning him and to nap or just rest and he and Don could visit. We are raising our 2 year old grandson, so we may have to bring him, but maybe not, depending on the day. It might just make your situation feel less stressful to have a day of rest and have someone to talk to. As long as you have a hoyer, I can get him up for a shower (modesty flew out the window 6 years ago when Don had his accident and our life became an open book in all areas - plus he spent 10 months in a nursing home cause we were homeless as our home was not wheelchair asses. and we sold it, but could not find a home that would work for being in wheelchair. Mostly doors were too narrow - I lived with friends, you see lots of naked people in nursing home. We moved to property we had and lived in a tent for a few months while putting a single wide trailer on. plus prior to that I worked with developmentally disable adults and saw more nakedness then I can count), I can help clean or just whatever you need. Maybe for a different scene you two could come to our home for a visit also once your husband is able to get out and about.
So what kind of bite does he have that is laying him up so much?
Sounds like he is a big guy, don't worry about that. Don is too. Don is 6"6 and 275lbs. He was in Harborview for 5 months after accident and that long you learn lots of tricks for moving the big guys around. Or, it may take both of us for certain things, but that will ease you a bit.
Don is almost 54 and I will be 50 in April. Anyway - I know sometimes I feel overwhelmed and frustrated, but I have my 2 sons that are able to help when I need. I try not to ask too much, but I am learning to accept help, which is hard for me to do. I also have thought it would be good to find others who are in the same situation to have as friends, as people we know don't know and don't understand. Anyway - if you want to email me: cheri0261@hotmail.com
Hope to hear from you and see if we can somehow help you out and who knows, maybe a friendship will happen which could be a blessing to us all. I know Don could use a friend and so could I.

[Saneaj]

Thank you for your offer. It was truly appreciated. Our situation is ever changing. Today, our pastor came over and helped me with him. The men's group from our church is going to start helping out which is a massive blessing. So I think that for right now we are finally getting covered. We live about 5 minutes south of the Kentucky border. So there's still some distance between us. But it was so nice of you to offer like that.

There's been more developments with my hubby and he's taken a turn for the worse. He may even end up in a hospital in Nashville. We just don't know right now. And the bite was from a black widow. Stupid spider! lol

Anyways... I am very appreciative that you tried to reach out to us like this. There are a few things in the works right now and hopefully we are about to get a bit of help. I'm so tired so please forgive me for not elaborating. I'll try and give you a holler on your email sometime this week. It would be nice to chat with you and your hubby.

Sending you a heartfelt thank you!
Sheri

[airart1]

5 minutes from the ky border, where at, i live in clarksville, if i can help just let me know, i know alot of people around here............

[cheri0261]

I'm sorry to hear that he has taken a turn for the worse. We will be praying for him. Let me know if you change your mind. Love to hear from you when you have time

Cheri

[Saneaj]

We live just outside Red Boiling Springs