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RE: In sickness... - 6/7/2008 9:28:10 AM
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manda59
Posts: 5751
Joined: 9/22/2005
From: Hampshire, UK
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hi there
Do you attend church? Are you having any therapy for your MS?
_____________________________
"I love Manda's suggestion to just laugh most of it off.."
Tinkerbell, September 2008
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RE: In sickness... - 6/7/2008 2:46:11 PM
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SmyLynn1
Posts: 21
Joined: 6/7/2008
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I would but am not able to do anything without significant assistance. I can't get out of bed, dress myself or get into the van by myself. I am also in a town I have lived in less than a year. So friends/family are nowhere close. My husband does not want to find a new church. Thanks for asking.
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RE: In sickness... - 6/7/2008 2:49:12 PM
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SmyLynn1
Posts: 21
Joined: 6/7/2008
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I didn't answer the question about MS treatment. I just began Rebif last night after many months with no treatment.
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RE: In sickness... - 6/7/2008 3:50:55 PM
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jaimestarcross
Posts: 802
Joined: 11/28/2005
Status: online
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I worked in the health care field for over 10 yrs. in NC and I've had several clients with MS - if there are health care resources in your area to provide care - sign up! A couple of my former clients had their physician get them into a program where they got in-home care aides a couple of times a week and some of them got in-home care aides 5 days a week. I'm not familiar with programs in all States but you could speak with your doctor about some home care assistance.
Remind your husband that if he removes the phone/laptop or any other necessary aide from you that is a form of spousal abuse/neglect (due to your medical condition.)
I do think he needs some help in providing you with care - on top of that he's working outside the home at a part time job. I think he's somewhat overwhelmed and stressed by the turn of events in both your lives.
-Do not hesitate to check into counseling and other helpful resources in your area for MS patients -
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RE: In sickness... - 6/8/2008 2:31:11 PM
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hnt
Posts: 527
Joined: 4/11/2005
Status: offline
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quote:
ORIGINAL: jaimestarcross
I worked in the health care field for over 10 yrs. in NC and I've had several clients with MS - if there are health care resources in your area to provide care - sign up! A couple of my former clients had their physician get them into a program where they got in-home care aides a couple of times a week and some of them got in-home care aides 5 days a week. I'm not familiar with programs in all States but you could speak with your doctor about some home care assistance.
Remind your husband that if he removes the phone/laptop or any other necessary aide from you that is a form of spousal abuse/neglect (due to your medical condition.)
I do think he needs some help in providing you with care - on top of that he's working outside the home at a part time job. I think he's somewhat overwhelmed and stressed by the turn of events in both your lives.
-Do not hesitate to check into counseling and other helpful resources in your area for MS patients -
I agree.
There are alot of community based programs as well that will help you with rides to the doctor's visits etc when you need them.
I would start - besides your doctor - with your Village Hall, Park District, and Chamber of commerce. Between those three sources they may be able to come up with ALL kinds of leads! OH! If they have Senior Services type of program in your area - ask them as well!
Don't just ask one department - ask all of them! You might get lucky with a person that is really plugged into the community, and they can be a HUGE wealth of information for you!
Also I know alot of churches in our area that will come and get disabled people and bring them home for services!
I would start there for a number of reasons. ONE it may make you feel more independent, and TWO it could take some of the burden off our husband. I'm not going to excuse his behavior at ALL!
If you take care of part of this without his help - when you can of course - he may feel more receptive to helping in the other areas of your life!
_____________________________
h
Emotional abuse and Faith
Reaching for IT!!!!!!
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RE: In sickness... - 6/8/2008 8:06:21 PM
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SmyLynn1
Posts: 21
Joined: 6/7/2008
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I have been in touch with the MS Society and the Joy Shabaz (?) Center. The MS Society has started a "case manager" program. So I have one assigned. The initial items to work on was repairing a rail on my hospital bed and a wobbly seat on my motorized chair. MS Society had said they would take care of it. The appointment was made and no one showed up. My caseworker tried to get someone to work on it again, to no avail. She and the lady from the other group worked on getting me approved for the transportation service in my area. I have not been able to try them out yet. I tried social services to see what I can get for services, but I don't qualify for services because, believe it or not, my income (disability checks) is too high. Well, I qualified to have someone come bathe me once a week and my husband said it was pointless since he does it everyday and cleans/bandages the stoma for my supra pubic catheter.
My neurologist got 4 weeks of PT and OT in home for me. It is completed now. They told me and my husband that I am doing well and that he needs to continue doing certain activities with me. They have never happened. I will talk to the doctor this week about in home aid services. I am so broke that I hope they are free. If there are any other services avaiable in the area, then I am unaware of them.
I choose not to tell my husband about the abuse issue unless he tries it again. Telling him something like that when it isn't happening at that very moment will be pointless. It would only make tension escalate. I am sure that having a disabled spouse is not fun or easy. Our marriage is not in good shape as I explained earlier. On the in-home aide stuff, I was told that due to the condition of my home environment I could possibly be removed from my home by the state if the "caregiver" reports it.
I agree about seeking counselling. The MS case manager strongly suggested it and my husband agreed to do it...in her presence. Then when I broached it later he wasn't interested. I reminded him he said that he would, when the case manager was here. He said some choice words and said he didn't give a rat's behind what she wanted us to do.
"Village Hall, Park District, and Chamber of commerce" were suggested. I am not sure but I'll see if I can find anything new. I may have missed something. If there are Senior Services programs in my area, I'm not in the Senior Services age group to utilize them.
I love the idea of getting back to church! I'll check out churches from the web or newspaper. I appreciate that some churches may have folks willing to help, but my husband will have to dress me and get me into my chair. I have to check if the transport service to take me places runs on Sundays. I am a BBW and to get me in and out of the chair is challenging so only transportation where I can remain in my chair will work.
Since no one really said much about my husband's other than caregiving behavior, I'll throw out something I've been considering. I was thinking that it may make sense to get myself out of a regular home environment. Anyone know about a place I can move/be placed that has a decent reputation? It may be the best thing....not for my marriage...but for my sanity.
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RE: In sickness... - 6/8/2008 8:28:26 PM
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CherishedbyGod
Posts: 2545
Status: offline
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quote:
ORIGINAL: SmyLynn1
Since no one really said much about my husband's other than caregiving behavior, I'll throw out something I've been considering. I was thinking that it may make sense to get myself out of a regular home environment. Anyone know about a place I can move/be placed that has a decent reputation? It may be the best thing....not for my marriage...but for my sanity.[/color]
My heart goes out to you, dear lady. It is one thing to have a disabling condition but to have an uncaring husband on top of it is almost more than one can bare....and it may be for you.
I am certain there are emotional things that you are not sharing that go along with your circumstances. Horrible things like feeling like one is a burden, the guilt, etc. (Even tho it is not your fault, I know how the enemy works and will play havoc with things like that)
I will pray for you. I do so hope you will find a way to go to church. I will pray for that, also.
_____________________________
~I would love for you to come and learn about Jesus of Nazareth with me in the Writer's Roundtable Folder~
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RE: In sickness... - 6/8/2008 8:46:26 PM
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buckifn
Posts: 1701
Joined: 5/23/2006
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I don't know that it is fair to say your husband in uncaring...maybe he is ill equipped to handle the situation period and needs resources himself?
A good case manager will address all the family needs as well as your indiv. ones. I would make sure that happens along with the other advice you have been given .
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RE: In sickness... - 6/8/2008 10:31:32 PM
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SmyLynn1
Posts: 21
Joined: 6/7/2008
Status: offline
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CherishedbyGod your kind words brought me to tears. You are so right. I do feel like a burden. It may very well be that I let that liar of liars put that in my head. But I have a hard time feeling like anything other than a useless bag of bones.
buckifn you are probably right. He probably does care or else he would leave. He is definitely depressed because he was unable to get a job when he got here, and can't deal with our financial situation. We were separated for so long that he was living "the single life." He can't seem to let that go. He will not go to therapy. He thinks "we just need to work it out" for ourselves. As for the case manager, she is a nice lady but very frustated with my situation. I think she realized that the things she was trying to make come to fruition were just going no where.
I thank you for the advice and prayers. If any other recommendations come to mind please post them.
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RE: In sickness... - 6/9/2008 4:05:45 PM
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CherishedbyGod
Posts: 2545
Status: offline
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quote:
ORIGINAL: SmyLynn1
CherishedbyGod your kind words brought me to tears. You are so right. I do feel like a burden. It may very well be that I let that liar of liars put that in my head. But I have a hard time feeling like anything other than a useless bag of bones.
On a better note, I wonder if you have seen this website? They also have material for caregivers. They are such a blessing. I used to write for them....
http://www.restministries.org/
_____________________________
~I would love for you to come and learn about Jesus of Nazareth with me in the Writer's Roundtable Folder~
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RE: In sickness... - 6/9/2008 5:52:45 PM
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Hislittleone
Posts: 633
Joined: 7/13/2007
Status: offline
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Smylyn1, I just have a minute but wanted to say I'm so sorry for the way your husband is treating you. (((Smylyn1))) This is completely unacceptable behavior no matter how much stress a person is under. Period. It's abusive.
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RE: In sickness... - 6/10/2008 5:05:04 PM
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bride48
Posts: 5341
Joined: 4/12/2005
From: Near Boston
Status: offline
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Isn't everyone missing the main point that her husband is looking at nude pictures of other women? Advising her to get physical therapy and/or get a caregiver seems like blaming the victim. Her husband knew when he married her that she would eventually need total care. He vowed "in sickness and in health" knowing full well that she had a progressive disability, and he married her anyway. Evidently, he didn't honestly count the cost.
_____________________________
Joyfully,
DebbieLynne
The General and the Poet (blog entry)
<--Taken on August 24, 2008: our 6th anniversary
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RE: In sickness... - 6/10/2008 6:53:21 PM
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jaimestarcross
Posts: 802
Joined: 11/28/2005
Status: online
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If you want to find a care facility - call the Department of Social Services and get your self a case worker if you don't already have one. You will need to tell her what is going on in your home and the treatment you are receiving by your husband who's being too controlling over your situation and is refusing to do what he'd agreed upon (seeking counseling.)
Even allowing the care aide to come in once a week would be something of a rest for him because that'd give him free time while the aide is tending to you.
(What state do you live in?)
Do you have any other family that could help out?
My mom lives in NC and her health care aide is paid by the state and my mom qualified for help and her medical is coverage and she pays out 5 dollars for meds. over the allowed amount. My mom is also a diabetic and all her stuff is free - they even got her a free blood monitor! I've worked in home health and I've had other clients who got help that were in there 50's and had little to no money. I also stayed part time with a lady who was being mistreated in her home by her family member and she got her social worker to find her a facility to stay in and her checks go toward her care.
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RE: In sickness... - 6/10/2008 11:38:59 PM
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lilee
Posts: 16
Joined: 7/24/2007
From: MN
Status: offline
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SmyLynn1, Also remember the net is a good place to find place to get help, there are also churches that have thier sermons posted on the web so you can listen to them from your bed at home. Crosswalk is also a good place to get help and see things differently. Remember Christ comes 1st in your marriage. I hope that you are praying for your husband too. Trust and Obey God and He will met all your needs. Praying for you!!
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RE: In sickness... - 6/11/2008 12:03:09 AM
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GroupW
Posts: 2713
Joined: 11/16/2007
Status: offline
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My dear, I have no words for that and can't imagine the hurt this caused. I wish I had better for you but can only offer my prayers.
All my best,
BT
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RE: In sickness... - 6/11/2008 4:02:39 PM
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SmyLynn1
Posts: 21
Joined: 6/7/2008
Status: offline
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CherishedbyGod, I have never seen that website. I marked it as a fave to be able to check it out. Thanks for the suggestion!
Hislittleone, Thanks for taking a moment to post. Yes, I've been aware of his abusive tendencies for a long time. Mostly everyone in my life says I should divorce him. I just keep praying that our marriage will be healed if I am patient enough. Thank you for your kindness.
bride48, Thanks for seeing the most hurtful thing that happens. We have had the conversation about knowing I had diabetes and MS many times. That was my "scare tactic" when we first met. He convinced me that didn't matter because his grandmother was a double amputee he often carried around. He had two friends with MS, one wheelchairound. So I believed he knew what to expect. Thanks for recognizing how deeply hurtful the "other women" issue is for me.
jaimestarcross, I live in Guiford County, NC. I have a 19 yr old dtr in the area. She is a fulltime student with 2 jobs. I see her for a few minutes a couple of times a week. I talk to her everyday. No other family or friends live in the area. I have already been told I have too high an income to qualify for services. I am 41 yrs old so if I were older maybe I could qualify for more services. Thanks for the good suggestions.
lilee, I do utilize tv and web to get spiritual food for my soul. My husband is always in my prayers. There isn't anything I can do for my husband in a physical way so I do what I can in prayer. I appreciate the recommendation.
GroupW, the funny thing is that prayer is the best gift I could ever receive. So accept my genuine thanks.
< Message edited by SmyLynn1 -- 6/11/2008 6:22:58 PM >
_____________________________
The Chick in the Chair
Still smyLynn even though I can only chair dance
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RE: In sickness... - 6/11/2008 4:14:25 PM
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bride48
Posts: 5341
Joined: 4/12/2005
From: Near Boston
Status: offline
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Having lived in a nursing home, I'd strongly urge you to avoid that route as long as possible! In-home care, while frustrating because of the high turn-over rate, is much preferable.
_____________________________
Joyfully,
DebbieLynne
The General and the Poet (blog entry)
<--Taken on August 24, 2008: our 6th anniversary
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RE: In sickness... - 6/11/2008 4:26:27 PM
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TorchHeart
Posts: 1109
Joined: 6/4/2008
From: One of the coldest places on Earth
Status: online
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quote:
ORIGINAL: jaimestarcross
I worked in the health care field for over 10 yrs. in NC and I've had several clients with MS - if there are health care resources in your area to provide care - sign up! A couple of my former clients had their physician get them into a program where they got in-home care aides a couple of times a week and some of them got in-home care aides 5 days a week. I'm not familiar with programs in all States but you could speak with your doctor about some home care assistance.
Remind your husband that if he removes the phone/laptop or any other necessary aide from you that is a form of spousal abuse/neglect (due to your medical condition.)
I do think he needs some help in providing you with care - on top of that he's working outside the home at a part time job. I think he's somewhat overwhelmed and stressed by the turn of events in both your lives.
-Do not hesitate to check into counseling and other helpful resources in your area for MS patients -
I'm in complete agreement, here.
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RE: In sickness... - 6/11/2008 4:46:26 PM
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TorchHeart
Posts: 1109
Joined: 6/4/2008
From: One of the coldest places on Earth
Status: online
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quote:
ORIGINAL: Hislittleone
Smylyn1, I just have a minute but wanted to say I'm so sorry for the way your husband is treating you. (((Smylyn1))) This is completely unacceptable behavior no matter how much stress a person is under. Period. It's abusive.
Also in agreement here.
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RE: In sickness... - 6/11/2008 11:59:10 PM
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SmyLynn1
Posts: 21
Joined: 6/7/2008
Status: offline
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bride48
Thank you for the input about the nursing home. I'm scared to go that route but also feel like I have to keep it on a back burner, just in case. Getting an in home aid is expensive and I don't know how to get past that. I have already dropped paying credit card bills because my monthly insurance cost is 1259.00 and had no money to buy groceries. So paying 18 to 20 bucks an hour for an aid is a pipe dream. I will do my best to stay out of a nursing home but depending on the home situation it may have to be looked at in the future. I appreciate your insight on this matter.
_____________________________
The Chick in the Chair
Still smyLynn even though I can only chair dance
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RE: In sickness... - 6/12/2008 2:04:38 PM
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bride48
Posts: 5341
Joined: 4/12/2005
From: Near Boston
Status: offline
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Are you eligible for Medicaid? Hubby and I are both disabled, and Medicaid pays for our personal care attendants.
_____________________________
Joyfully,
DebbieLynne
The General and the Poet (blog entry)
<--Taken on August 24, 2008: our 6th anniversary
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RE: In sickness... - 6/13/2008 6:53:25 PM
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Butterflytearz
Posts: 142
Joined: 7/6/2006
Status: offline
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Dear Smlylynn
My heart goes out to you,, I know how terrible you are feeling physically and emotionally. Still I pray that you in your helplessness and weakness lean totally on Jesus. Surrender to him everything and trust Him to make a way.
If your husband resents your illness and wants out,, then let it be. God will take care of you. A single disabled person usually gets more help from government agencies and other places than one who has a husband. Especially if your husband is emotionally abusing you as he is. You don't have to divorce , maybe just a legal separation. I would say its time to take care of yourself an think about dividing whatever assests you two have together.
I sure hope universal health care comes in quick for your story is the story of many other sick people who need help. Stress is one way to make MS even worse. You need peace of mind that only Jesus can give, hang on to him and never give up hope. He will make a way.
Im praying for your continued strenghth of spirit which is our true lifeline.
Love you sis
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RE: In sickness... - 6/14/2008 4:02:51 AM
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SmyLynn1
Posts: 21
Joined: 6/7/2008
Status: offline
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Well, I qualify for medicaid with a deductible that first must be met. A $15,000 deductible... every 6 months. I make too much money from my SSDI and LTD income. Crazy isn't it?!?
As for letting the marriage go and worrying about me, it may just happen. I just finished writing a crazy long post in some other Marriage topic. If you read that, then you will see why I am ready to take steps to let it go. The fear of being totally alone and a burden on my daughter has been a big road block for me. I am just in a crazy fog right now. Soon something will have to change.
Thank you for the prayers. I need them. I am having a tough time hanging on to hope suddenly. The Lord is there to be my rock. I know this. I KNOW it. My grip is weak at this moment. I'm trying to hold on. Please Lord make me strong to keep on the path you want me to follow.
_____________________________
The Chick in the Chair
Still smyLynn even though I can only chair dance
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