Your Rant and Raving page, unload your feelings

[tdamess]

my husband was watching c.n.n. and it had something about als being service related and one other diease

 

[sadiemae]

Actually there a lot of service connected diseases, but in all but ALS, you have to go through all kind of hoops and barrels to prove it. ALS is a blanket coverage, if you have it, you are covered, no questions asked. I know several Vets with Agent Orange related diseases, and it takes a miracle to get it connected. They cover ALS, no questions, and NO ANSWERS. HUGS Lori

 

[MtPockets]

Yes ALS is 100% service connected disability if you served anytime after the Vietnam war. It took me about 7 months to get it.

 

[joelc]

I never thought I would be writing something like this but I now am beginning to understand what most of you are going through.

I am being treated like I don't exist and everything is a nuisance. My family has conversations and I am not included. They make decisions without including me and when I try to contribute I am totally ignored. Then after the fact they say they should have done something different and what they should have done is what I tried to tell them. It makes me feel like I have no purpose to live. My wife can't drive my wheelchair so she gets totally frustrated and mad. I need to be suctioned at the wrong times, she will not give my NetBook and can't understand what I tring to say so walks away, etc. I could go on but I think most of you know exactly what I am saying.

If it wasn't for this forum I would have no purpose in life and nothing to live for.
Thank you for being my family! I love you guys to pieces!

 

[sadiemae]

And we LOVE you too Joel! As a CALS, I think I know what you are feeling, as my husband often feels the same way, but I know I really do not know. All any of can do is to keep trying. HUGS Lori

 

[Al]

I know of what you speak Joel. Maybe not quite as bad yet but it will come eventually. Some days just aren't fun any more.

AL.

 

[lovetosew]

I am so sorry, Joel, you feel like you don't have any purpose, and I can only imagine how you feel, but if it weren't for you, I couldn't have gained the courage I needed regarding deep suctioning my husband - I didn't think I could do it. Also, my son goes back to school in mid-August and I wouldn't have known there was a mattress I could get for my husband where I wouldn't have to turn him in the middle of the night, being by myself with him and being unable to. It was your posts that helped me know what to do and for this I am grateful. These may be small to some, but it wasn't to me. I know this doesn't help with your situation at home, but I just wanted you to know you are valuable to us all - I know you have been to my husband and me. God Bless You, Joel.

 

[BarryG]

Joel, you have been such an inspiration to all of us here and no one more than me. The lack of easy communication has been the most profoundly isolating and discouraging things that I have ever experienced and now that my mobility is being seriously affected I can really relate.

I hate having to have carry my voice in a box but so far I am able to access my talking machines myself. When I get to the stage where I need help to even use my voice I hope that I have your courage and endurance. Please keep fighting to be heard my friend, we all love and need you here. Being here to help each other is a very good purpose!

Barry

 

[haase]

Joel, my heart aches for you and the tears flow. We all need you and the help you provide us through your words. Peace and prayers.

 

[luvnmm]

Joel - I cry for the pain you are feeling. I wish there was some way I could stop it all from happening to you. Please know that I need you and other members of this forum need you. We love you. I want to thank you for giving me some insight to your feelings - it will help me to understand what my mom may be feeling. You are such a wonderful person, don't ever think that you aren't.
Peace be with you,
Linda

 

[Ladyinn]

Dear Joel, you are such a wonderful man who contributes so much to our forum family. I have admired and been inspired by your posts and wondered how you and your wife could be so upbeat with all the changes you have had to make. I hope that I can be as positive when I am as dependent on others for my care.

Having cared for my husband for three years before his passing four years ago, I share your frustration and pain and feel certain there are better days ahead. I also feel your family's pain and frustration as they watch the man they knew and who was their rock, wither away and become dependent on them. This roll reversal is a killer for everyone.

I hope that today brings joy and peace to all of you and that your spirits are lifted with the new day.

Hugs and blessings,

Diane

 

[tdamess]

we love you also , why will she not give you your netbook ? ... anything we can do to help somehow

 

[abbas child]

Joel, I just now saw your post. I hope (and will pray) Christine was just having a temporary meltdown and bounces back into the relationship she previously had with you. This is such a personal journey with ongoing decisions which have to be made... We do love you and need you, Joel. Your wife may need a break, if possible, for a few days if there's anyone skilled and proficient to pick up her care of you. I think it's natural to go in cycles with this whether it's the pals or the cals. Some days it's easy to smile, and other days very difficult. I have a link from youtube to PM you of Joni Eareckson Tada's interview with Larry King... you've probably seen it already, but near the end she comments on how she still has to pray in the morning to have a smile for her caregiver. I felt better after seeing and hearing her. Praying peace for you, Joel. Oh, dear, I just realized I can post the link, and as a moderator you're able to "fix it". See how important you are?YouTube- Larry King Show-Joni Eareckson Tada story

Love,
Ann

 

[joelc]

God Bless all of you! Thank you for the encouraging words and outpouring of love! I did say that this forum is what keeps me going and gives me a purpose in life. It has been my life line for a long time now and I love to try to help people. I have been blessed with many exciting emails where I have posted something that has helped someone. That is what gives my life purpose now.

I know and understand how hard it is for my wife and family to watch what is happening to me. That bothers me too. As the one who always took care of everyone it is hard to be the one having to be looked after. Sometimes they react inappropriately and I can understand that, but it is hard being the one causing pain for my family and there is nothing I can do about it.

Don't worry, I am here to stay for as long as I can contribute something.

I love you guys!

 

[brooksea]

Thank you, Joel!

Sometimes life just ain't right...