'A Patient Voice' Community

Dear Rutheanne100,

Those are some excellent tips and suggestions! Thank you for sharing them with us. I hope other folks will read this and step in with their own stories and suggestions.

My best,

Byroney

Hi
Ruthanne

I found your post very helpful. You and I are similiar, I have had 6 back surgeries and possibly looking at another one. I have lived with daily chronic back pain for the last 15 yrs and most recently been diagnosed with fibromyalgia. I have a very strong faith also, that's been lifeline!

I would love to hear more from you!

Your suggestion

One other I would add is to find a way that you can be giving back to others. So often people with chronic illnesses or disability's need help from others and it can feel like all you are ever doing is being needy. My husband loves to sing and work with kids. So in church he sings with the kids and plays guitar. They love it and he gets to be needed. Even my twins who have developmental delays love to help, they want to be needed and show that they can do things.

I am alone most evry day. I live alone and I had brain tumor surgey in june 2003. I am on Social Security SSDI I am not expected to recover from the Surgery I had 90% of my Pitituary Gland removed So I get very tired easily. I do enjoy reading even if I cant remember anything of what I have read the next day, Some times when I read a novel I have to go back several pages or chapters ton see whats going on in the book I have a cat and he keeps me company. I meet a few people on line but the relationship did not go anywhere and I have not heard from the last lady I meet evn though I have sent messages email and phone. So right now I dont have any one in my life I have a Mom and sister who live in Georgia My Mom is in a assited living facility and I am trying to nget my Car fixed so that I can get up to see her. My Dad passed away last September and my Sister is Power of Attorney She handles my Aunts and my Moms affairs and she is living in my Aunts home. She is selling my Moms house where I wanted to live. She said that my Mom needs the money, But I think that she is paying for both my Mom & my Aunt from this sale so that she can keep my Aunts house for herself while I am in Public housing She is also renting out a room in her house for extra money and she works full time So she has more money than I do When my Dad passed away she got both the Car and my Dads truck which she said is going to her son when he turns 16. So I never had anything from my Moms house she did not know my sister was cleaning out her home, She did not tell her or me about it until after it was done.

I live alone and at times I get very depressed. Having a pet
to talk to makes a world of difference because you know
they are listening.

Reading your e-mail sadden me.

I too living in afforableliving.
However due to my back injury worsen, I have a caretaker who resides w/ me. ( my freind/caretaker is a friend I have knowen for 23 yrs, and move back to Denver,Co from Fl.keys to help me ) Plus soon I be having back surgery.
I am very famlier w/ your brain surgery.
My be-lated son had the same surgery for his rare seizure disorder, we only did 3/4, and then the nero-surgeon caused a stroke durning surgery, and did not tell us. I treid to sue, but no luck. My son passed away from seizure in his sleep, and a heart attack " Thanksgiving night - 7 yrs this yr " My beloved angel was 15 1/2 yrs of age.
Anyhoo, you might call your local soical services to see about getting a care-taker , county Mental health have several support groups, and I belive in your state, county medicade will pay for a cab service taking you to and from Dr. apt's, support groups, more.You have a medicade tech. w/your local county social services, if you do know if you have a tech. then call the 800 # on the back of your medicade card.
Re: what your sister has done is sad, you could find a lawyer?????? to help w/ getting monies from the house if it sells,and other resorces from family property, just a suggestion. Lots of no cost lawyers for people w/disabities.
www.leagalaid.com
Before my son passed I was an avcate for children, teens, adults proving resorces, and provided respite care for over 20 yrs.
Me- I am dealing w/ so much w/ my mgnt.
1. they owe me over $2,000 dollars.
2. had my car towed due to expired plates, when they said told me I had had anoother wk. to store my car at freinds, get plates ( whihc I could not do due to my back injury)
3. no paper work ,and they have me living " rent free "
Trying to find a lawyer to help me sue mgnt, because the list is longer.
Well try to keep chin up, and good luck.
If you want to vent you may reply.
Kelly

Dear Ellicul,

I definitely agree with you about pets. Whether you have a fist, dog, cat, bird, horse or whatever, they can make a tremendously positive impact on your life.

Kelly (Piggy80218),

Thanks for your suportive post. I am so sorry to hear about the loss of your son. I know I've posted to you before, but I did want to mention it again.

For anyone who is interested, here's a link to the Legal Aid Society (this is not a WebMD site, and we cannot guarantee content). There may be something there to help.

Best wishes,

Byroney

Ruthanne 100: What is the name of the condition you have that results in your bones dying? What is causing it? Is there any treatment?

Thank you Ruthanne for putting this message in here. I also have many chronic illnesses, and I wish I could handle them half as well as you appear to be able to. Right now, I am having problems with my depression. I think alot of it now has to do with our winter season. Other than having a white Christmas, I hate having cold, dark, wintry weather. I am really trying to go to God alot more than I ever have before. You know, reading the bible more, other Christian literature, and prayer. Regarding your pain, I wondered if you and your doctor have ever considered getting a pain pump. Mine has really worked well for me. I honestly think it saved both my marriage and my life.

Sorry to hear about your troubles. Family financial matters don't bring out the best in some people, like your sister.

be careful with the pain pump. It ruined one of my friend's lives and the other, a nurse also became disabled. It didn't help them at all. And you can't get the darned thing out once it's in.

Hello garygascho,
I too suffer from depression in the winter, plus I had major Back sugery 11/4/2010.
beside my pain I did research, spoke w/other women.
I live in Denver,Colorado ( some days we have so much snow,and then a wk. later we have sun )
But when Us Women add Vit D durning the winter mo's, and belive me this happens to women in the winter-due to our hormones, menapuse, etc. Try it it can't hurt.
Also, I go into a deep depression starting a week before "Thanksgiving day " My son who was 15 1/2 yrs of age passed on Thanksgiving 2002. My son had a rare seizure disorder, and on Thanksgiving I woke up a hour too late ( due to meds he needed at 2:00 a.m., I normally had F.T. R.N. ) That night I gave the R.N. off, and at 3:00 am. it was awful. My beatful Angel had a major heart attact w/ a gran - mal seizure.
Please forgive me venting that part of my depression.
Then when I had surgery Nov. 2010 I thought my pain from my sugery would numb me for Thanskgiving, X-mas, No it did not.
But taking the Vit D did help. My vit. D is mixed w/ Cal.
Currently, have gone in some depression ( 8 mo's after surgery ) Lately all I do is sleep....... Due to a med. I take for pain. Plus I have to do 2 1/2 more yrs of re-hab, and my Dr. and Dr's said I will be in pain for several mo's.
They put a brace in my back, and more.
Try the Vit.D it might help.