My MSAA Community
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No support

Couple weeks ago I got an email from family that said I am a burden on my family and to find a new family. I feel horrible. I have never asked for their help at all!!! My Dad offered me to live with him and he is upset about what the family said. I'm very lonely and don't have much support very very minimum. I do have a counselor and she said I have ptsd from my childhood. I'm struggling to work through that. Then my relapse a couple weeks ago I can't seem to get back on track. I applied for help at MS Society and MS Foundation. No help received. I feel like a henderance upon my family and friends . What little friends I have out of state!!! I have to live in Florida cuz that's what my dad wants. I have lost everything!!!!! My kids are grown and walk all over me. Don't know where I went sooo wrong!!!??? It's sooo hard to live on this earth with MS. I was doinggreat until I had a pulmonary embolism in May of 2012. Then couple months later diagnosed with progressive MS and it's wearing me down financially physically and emotionally!!!!

I have disability Medicare and Medicaid insurance. Guess I shouldn't have had any copays for the last 2 years. I'm getting temporary home health care thank God. I need regular home health care all year round. I didn't know how the system works. I worked hard my whole life. I was a devoted and good mother to my children. Everything has been crazy since 2012. I'm sooo emotional and just want to be treated with respect dignity and love and support when possible. I don't normally reach out to anyone. I suffer alone in silence. When I cry I hide. No one likes when I cry. My Dad is an alcoholic and so is my brother. I don't like drinking alcohol. My mother had MS and passed away in her mid 50s. Don't know a lot cuz she disappeared when I was 17 years old. We found out she died over the internet. I'm not sure why my parents had us!!!!! I'm sooo full of pain and just exhausted from life. I'm hating myself more and more. I actually reached out for help NOW I feel like a bigger burden on society.

I'm sorry for saying sooo much. I literally can't handle anymore. I only asked for help one time from MS Society or MS Foundation and nowI feel worse.

Thank you for listening to me. I don't know where else to go. I can hardly get around now. I can't afford to pay anyone to help me. I'm desperate!!! Mostly for unconditional love and support!!! I used to be an advocate against violence and worked in a domestic violence shelter. Now I can't work the computer like I used to be able to and can't get the help I need. I'm very discouraged and sad. I want my healthy life back when I was strong!!!!!

Love

Shawn Christine

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I’m sorry to hear about your family 😡 Don’t feel bad about the way you raised your kids, we do the best we can. I don’t know 🤷🏼‍♂️ why family gets that way? I think illnesses scare a lot of people and they don’t know what to do 😯 My sister-n-law and husband have done that since we have to be so tight on money 💰It is like they are afraid we might ask for something ? Oh’well let that be thier problem, not mine. That’s one thing I have been able to do is not take on others problems, we have enough of our own......The main thing that holds me together is 🙏 and ask the lord to take away those bad feelings and thoughts. I know it’s hard, but try to hold in there 👍🙏🙏🙏❤️ Ken

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Thank you very very much!!

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Don't let your family affect how you feel. It is time to think for yourself. I saw examples in what you wrote that should fill you with pride. I'm sure you helped many in the domestic violence shelter to not give up on themselves. Keep asking the MS Society and Foundation for help. The Multiple Sclerosis Association of American can also steer you towards people that can help.

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Thank you very very much!!!

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doveflyfree what a beautiful handle, I love it. I don't think I have seen you on here before, so welcome. We may not be able to do anything physically for you but emotionally all of us on this forum, know and understand. We all have varying degrees of ms, it's a complex, awful condition, which you wouldn't wish on anyone. Acceptance is a big part of it, also I have found that it's ok to be selfish, and think about what is best for you. It's not in a mothers nature to be selfish but when you have ms, you have to be. Put yourself first, stop worrying about your family, and as Kenu says pray. As melack01 says, you have done so much for other people, it's time for you. Try contacting the MSAA and see what they can suggest. Jesmcd2 will be able to give you the contact details. Stay in touch and let us know how you get on. Blessings Jimeka 🌈 🦋 🤗 🙏

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Thank you very very very much for everything!!!

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Lots of good wisdom in these replies. Try not to be hard on yourself and take one day at a time. Sending you good thoughts and prayers.

Linda

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Thank you very very very much for everything!!

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Hello I am ssdw1958 I am sad to hear your family has done that to you. I know you are having a situation with your dad and his drinking but he must love you if he has taken you in. I know how you feel about your ability to get around it really stinks because I have the same thing. I am unable to clean my house and I walk with a rollator or I am in a wheelchair. Does your town/city have any place that can help you or assist you in any way. I would try to find out. Good luck to you. 🙏🏼

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Thank you very very much!!!

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Hi doveflyfree Welcome😊 The one thing you will find here is unconditional support!💕 MS is so finicky and for us to understand it? Let alone someone else.

I am so sorry that your family has chosen that road. Some of mine has also. All I can do is hope in the future that they get over it!💕 Hang in there!💕

Here is the number for mymsaa.org 800 532-7667 ext. 154 I really hope they can help!

~Hugs n Luvs ~

Jes 🌠🎄

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Thank you very very much!!! I'm not very good on this site but trying my best. I appreciate everyone's concern and love and support!!! It means A LOT that you all care about me!!! I'm taking a break today and trying to get get ready for Dr appointment tomorrow. My Dr is concerned about me and trying to get extra in home services for me. Gosh the support and love I feel from all the responses is absolutely uplifting and gives me strength to keep going!!!! I can only handle one day at a time. I'm praying for all of you!!! I hope everyone reads this message!!! This support and love is sooo deeply appreciated!!!

Love hugs and kisses to you all,

Shawn Christine

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Dear Shawn Christine, welcome to this extremely supportive community. Sending you prayers and warm wishes

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Thank you very very very much for everything!!!

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It sounds almost exactly like myself.

So sorry to you yet I understand.

All MSAA does is ask for money.

They turned me down for help too.

Please feel better

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Hello Momjules

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I'm just learning this site but trying my best!! Yeah that's what MS Society and MS Foundation did is send me emails for donations. It really made me angry. I'm struggling with my MS and now I feel even more alone in my fight. I took a break today and trying to relax and hoping for a miracle. All I was asking for was help with my urinary pads and $350 for rent. I only need help one month. I'm very very disappointed in the MS Society and MS Foundation. I'm such a burden and I feel worse now. I have maxed out my credit cards and get under 800 a month from ssi and disability. I have lost everything!!!!! And this MS is only going to get worse.

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You've definitely come to the right place! Most people here live in different places, have different symptoms, and have all different life circumstances. We all have MS (or similar disorders) in common, though. The people here are crazy supportive and caring.....genuinely caring. Never give up. Rely on God and lean on your friends here. :)

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Are your kitties from the same family?

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They are two sets of brothers. Jack and Jessy are almost 9 and came from the SPCA. Jimmy and Junior are 7 and came from a farm and were living outside as babies. They are my kids and are all spoiled rotten!! :)

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Thought there was a family resemblance. Very sweet!

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Yeah it's funny how sensitive animals are to our troubles. Nothing beats furry unconditional love. :)

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Thank you very very very much!!! I'm praying for you!!!

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doveflyfree, I’m sorry for the way you’re feeling right now. Though I can’t help in person, I will sure pray that help comes your way and for God’s comfort. Hang in there one minute at a time. We are all cheering for you.

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Thank you very very very much!!! God will get me through this!!! I have to keep my faith in God strong!!! I'm praying for you too!!!

Love hugs and kisses

Shawn Christine Elswick

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Prayers are great, but practically speaking you need more than that to help you psychologically and monetarily. I don't know what the answer it. Families are difficult to deal with at times. Of all the "charitable" institutions around, isn't there one that you can turn to for help? I'll try to give it some thought..off hand I'm not sure. What about some religious groups that claim they help out those in need? Sometime best friends can come from such groups. It does mean taking the time and effort to reach out to them. In All honesty, I don't know what I would do...

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Thank you very very much for your honesty!! I'm taking a break from calling today and just exhausted from life. Got pain management doctor done today and got injections into my spine. It should help tomorrow morning. I'm supposed to get help from MS Society. I guess it takes a couple weeks!!! Ohhh I am anxiously awaiting their help!!! It's gonna be a long 2 weeks!!! I'm shocked I couldn't find help with bladder pads!!! I just charged bladder pads!! Can't go without them!! This MS is really hard on me and everyone that has it!! I'm sooo sorry that we have to deal with this crap!! I am maxed out right now!!!

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Oh, messages like this just make me so angry! I would like to throttle your insensitive relatives! This is not something you did wrong, it's a stupid disease, for Pete's sake!

You sound so beaten down and I feel for you. Are you on an anti-depressant? It can help take the edges off and help. I've been on one for nearly 30 years and it does help. They don't make you happy (I wish they did!) but they do help.

Please stay in contact with us. Touching base with others who understand does help.

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Thank you very very very much for everything you said!!! I'm beaten down and alone but I have to try to hang on. My health insurance and doctors are trying to get help for me in the home. I'm getting temporary home health care right now but working on getting continuous home health care. Thank God!!! I just love you and appreciate your support and concern and thoughtfulness!!!! You made me feel loved and cared for. I'm praying for you and hope that you have a blessed day!!!

Thank you from the bottom of my heart!!!!

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@doveflyfree when I get down and frustrated with this life I think about the scripture at Isaiah 41:10 it says "Don't be afraid, for I am with you. Do not be anxious for I am your God. I will fortify you,yes, I will help you. I will take you by my right hand of righteousness. " That always helps me to hang on. I hope it helps you also. There is so much comfort that you can receive from the scriptures. I will pray for you.

Cindy Jones

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Such a thought filled reply. Nicely put!

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Thank you for God's comforting words!! I do appreciate you reminding me that God always blesses me!!! I appreciate everything!!! I am very exhausted and keep going to counseling and lots of Dr appointments!!! I sincerely think the MS Society is going to help me!!! That's what I am praying for!!

Thank you again!!

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doveflyfree I am so sorry to hear of your situation. We are looking at services for my father-in-law and I wonder if they may be somewhat similar to what you may need (he does not have MS). Does you state have some Agencies on Aging? They may at least be able to point you in a direction. Our local agency is wonderful! What about Catholic Charities? Does your state have an Adult Protective Services dept.? Maybe your local AARP could give you some ideas. I wish you luck on your search for help. Let us know how you are doing.

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All great ideas bavery207 :)

Jessie

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Welcome to the greatest most supportive group of people I've ever known. So you came to the right place. Here we try to lift each other up in these times of trouble. Being we all share this common bond of MS we truly understand things nobody else does.

I understand your hurt because much of my family is unsupportive and have distanced themselves from me. For different reasons but no help for what ever reason.

I am a man of faith and I stand strong on God's promise that he will never leave us or forsake us. He will make a way when there seems to be no way.

Ill be praying that you get help in your time of need because I serve a big God who delivers miracles and answers prayers to his faithful children.

God bless

Donnie

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Doveflyfree, your story so touched my heart at your feeling of abandonment. As so eloquently expressed in many of the replies prayers come from thiS group and they are powerful. As St. Paul said (more or less), my grace is sufficient for you, for my power is made perfect in weakness.

Keep holding the faith and know you are loved!. Keep knocking on doors. Can you get an advocate or someone to perhaps assist you. Do not abandon yourself. If you belong to a church or other religious organization, perhaps getting to their right organization can get some assistance. I know a lot of dialing.

As for your relatives, appropriate but civil boundaries . I can't even begin to imagine your obstacles. However I look forward to your victories as they are overcome.

Keep hanging in there, keep the faith.

Prayers and hugs

Bonnie

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I want to let you know that you have been in my prayers said and i told my husband in what you said how your family didn’t want you around. He was in shock how a family could do that to a member of a family member in need. He agreed with me that your Dad was good person to take you in even though he has his own issues. I am so glad that thing are looking better for you after you wrote to us. It does help to write to this blog it does make you feel better knowing that there are people around that will listenn and give you some information that can help you.

I also have those days when I feel down and then I will read some of the posts and they will lift you up. Have a good day 😃

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Thank you very very very much for everything!!! I'm praying for you and your family!!! I sure appreciate all the support and love!!! It helps me stay strong!! God is the best!!

Thank you deeply!!!

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I feel for you! I am going to be living with my daughter within the next couple of months not what I really wanted so early in my life. But she doesn’t want me to live alone . I am thankful for my children, neither of them will hear of me going into assisted living but I don’t want to bea burden to them.

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That's awesome that your children love you sooo much!!! I do no

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That is really nice to hear.

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I may have missed-what state?

Depressing as I may be to know, I would like to know how all goes.

A short run down on me. Very similar issues. 48, will be 49 on the 18th. Got dumped by the firefighter EX husband on my sister one night. "To Much To Deal With" a 20 year + one. I am currently in a nursing home for physical therapy. (Don't agree to let it be done) I thought I made some friends in staff, NOT. That didn't last! Long and short, don't be attractive and thought of as a flirt. My mother said she would get kick out (she IS a flirt) oh my. I have learn a lot the difficult way!!!

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I’m so sorry you have to deal with your family’s failings and MS! That email says more about who they are, it’s not about you. Hold your head up and keep and carry on as best you can. Prayers🙏

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Thank you very very very much for everything!!!! Your support is loved and appreciated sooo much!!! I went to counseling today and it helped me a lot!!! I'm grieving over having MS. I have been reaching out for any support and love I can get!!! I called MS Foundation and MS Society and wish there was a 24 hour help line because I have a lot of problems at night. I'm learning how to cope with MS. I'm trying to get out of a horrible relapse and trying to keep walking. Tomorrow my dad is home from work and I'm excited to see him and have his help!!! I honestly think MS is crappy and cruel!!!

I am praying for you!!! I sure appreciate your thoughtfulness and care!!!

Thank you for helping me with everything you say!!!

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I was just wondering how things were going, we are actually thinking on flying out to Utah to see my son and his wife and our first granddaughter we had some issues with the way they left but with this disease I find you can’t hold grudges because I don’t know how I will be feeling next year. You have to enjoy ever day:)

Have a good night/day!!

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I cant type too much at once, but Just dropping in to also send some love. You're my sister in Christ. And I truly wish I could hug you, and each one of these members. Debbie

Romans 8:18 (NLT) Yet what we suffer now is nothing compared to the glory he will reveal to us later.

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Thank you very very very much!!! Hugs and kisses to you!! My sister!!! Praying for you!!!

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Beautiful, loving, fantastic replies...faith, trust, believe...receive...

While we have all grown up hearing that our immediate "blood" family (should) be one way, I feel that many of us have discovered it's simply not that way- and we don't have to feel "less than", or that we "did something wrong"... or that if we were only "different" that we could change the situation.

In my personal life experience, "family" is LOVE, and LOVE is "family"...

This is so true for so many individuals. (Furry alike ;)

Without my "life" Family, I would not have made it over the years. Inclusive of friends, neighbors, co-workers, support agencies, Furry Angels...

Nor would have the thousands of students I taught whose (direct) families were either abusive, neglectful, etc...

Welcome to A Community of LOVE... A Family...

You are loved, and accepted, and supported for the beautiful soul that you are.

Just the way you are.

Yesterday, Today, Tomorrow and FOREVER...

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Thank you for your inspirational words and support and love!!! I sure feel loved and cared for on this site!!! I have reached out to resources and my primary doctor for help with my needs. You're sooo loving and kind and thoughtful and sweet and very supportive of me!!! Thank you from the bottom of my heart!!! You're beautiful!!! I sure needed to hear that today!!! Thank you very very very much for caring and being supportive and loving me!!!!

Hugs and kisses to you!!

Shawn

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