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shellygirl76
shellygirl76 joined the group
4 months ago
shellygirl76

shellygirl76

Minneapolis, MN
  • Gender Female
  • Age 43
  • Relationship Single
  • Connection to MS
violetkali
violetkali joined the group
5 months ago
violetkali

violetkali

, TN
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS
topistops
topistops joined the group
5 months ago
topistops

topistops

Edmonton,
  • Gender Female
  • Age 29
  • Relationship Single
  • Connection to MS
a1215j
a1215j joined the group
5 months ago
a1215j

a1215j

Sioux Falls, SD
  • Gender Female
  • Age 24
  • Relationship Separated
  • Connection to MS
kellsbells340
kellsbells340 joined the group
5 months ago
kellsbells340

kellsbells340

Glen Burnie, MD
  • Gender Female
  • Age N/A
  • Relationship Divorced
  • Connection to MS
carrie_agn_ms
carrie_agn_ms joined the group
5 months ago
carrie_agn_ms

carrie_agn_ms

Olympia, WA
  • Gender Female
  • Age 49
  • Relationship Divorced
  • Connection to MS
JenonWheels
JenonWheels replied to discussion RE:I'm alone, no family, no caregiver, and ___s getting real
5 months ago
I called in my primary physician and was referred to my heath systems Care Coordination team.I contacted the person for connecting me with resources through the government funded programs I qualify for.I contacted MSS Navigators.Essentially, they've all said the same - I've already connected with the available resources, everything comes through the government-funded programs, and my case manager for the government program money is slacking.She says she can help me get into assisted living but it will take many months, otherwise things are out of her job description and maybe I have to go through a requalification to see if I can get more servicesbutone of the services she IS responsible for connecting me with has gone unfilled for 8 months, I've told her it's urgent for 3 months, and she still hasn't filled it.Everything goes back to the government funding I've qualified for and is available to me and the inability to connect with the right agencies to get the services.I need a family to adopt me. I don't need a genius, I just need folks with a little ime and some common sense and kindness. Youo hear about thes people hearing about a lost litle soul like mine sweeping in and taking up the cause, but I can't sing opera in the subway, I don't have a teacher who got community support because I was housebound and loney, I haven't saved a puppy the day I lost my job, and I don't walk 8 miles to work at a crappy job each day.I'm invisible, like so many of us. I'm very alone. I'm scared. I try really hard to get help.I need a hero.
daydreamer1tt
daydreamer1tt joined the group
5 months ago
daydreamer1tt

daydreamer1tt

Cascade,
  • Gender Female
  • Age 35
  • Relationship Single
  • Connection to MS
JenonWheels
JenonWheels replied to discussion RE:I'm alone, no family, no caregiver, and ___s getting real
5 months ago
I broke down last week when I decided I just can't do what I'm doing anymore.My neurologist told me over and over my symptoms weren't MS. In fact when I was first "diagnosed" (2015 - MRIs showed brain leisions, spinal fluid showed protein bands, I'd been falling down a lot and was already in a wheelchair) he said he wasn't comfortable really calling it MS.  I've had 3 surgeries directly related to MS since 2015 and when I told him I was having the surgeries and that the surgeon thought they were MS related, he blew off those too. Must be something else. I had 2 major attacks this summer. When I saw him for my regular August appointment he said "why didn't you come in? We could have given you steroids." He's NEVER told me there was any treatment available, just that I had to report symptoms to him and suck it up.I'm in PT for ankle surgery and went to a MS sepcialty, they've found spacicity in my leg, hand OT referred by my neurologist shows I'm down 75% on dexterity. The PT and OT said my symptoms are very obvious and looking at my med history, I've likely had active MS for 10 years.I got MS for Dummies and another book last week to learn more and was ready to throw and break things and cuss the ***** out. That's when I lost it.I put out messages to my case manager who handles the gov't money, my ILS who left last winter and was replaced with a nightmare, my primary care physician (who referred me to their care coordination team who refused me a few years ago), a few adult care homes, and others I can't think of right now.Honestly, it took me a while to remember MSS and when I tried to call, they were closed for the holiday. I plan on calling tomorrow. I wish there was someone I could speak with face to face since my cognitive problems are under attack right now and I am so emotional/anxious.I will give them a call.
maria1
maria1 replied to discussion RE:I'm alone, no family, no caregiver, and ___s getting real
6 months ago
Jenon, Have you called the National MS Society and spoken with a navigator? The society is there for us and they have a ton of resources to tap into, If there is anyone who can assist you they can. There is also the Division on Aging phone number in your local phone book as well as the agency for the disabled, but I would first call the society before anyone else, they are more knowledgeable about life with ms (and yes, most of us with ms have other medical issues to add to the dilema) and all our needs, they are trained social workers who specialize in living with ms. They are our best advocates. 
Margaret-Ebb-K
Margaret-Ebb-K replied to discussion RE:I'm alone, no family, no caregiver, and ___s getting real
6 months ago
I hope to see a good response to your cry for help, as I don't have a clue!(This might be my first reply to anyone on this site, since I was first directed to it a little over 2 years ago. I left after a few failed attempts to navigate it, because EVERYTHING was too confusing for me then. Maybe it's just not super user friendly yet...or maybe I'm more challenged than I thought?)
Margaret-Ebb-K
Margaret-Ebb-K joined the group
6 months ago
Margaret-Ebb-K

Margaret-Ebb-K

North Richland Hills, TX
  • Gender Female
  • Age N/A
  • Relationship N/A
  • Connection to MS
rgala
rgala joined the group
6 months ago
rgala

rgala

Raleigh, NC
  • Gender Male
  • Age 44
  • Relationship Single
  • Connection to MS
JenonWheels
JenonWheels created discussion I'm alone, no family, no caregiver, and ___s getting real
6 months ago
I have other diseases besides MS, but MS seems to be needing all of the attention lately. The cognitive stuff is getting worse and I can't maintain living alone. I can't understand what I read as well. I have important paperwork piling up. I have a terrible memory. My anxiety is a mess, but since I "live independently" in the community, I'm not tapped into resources unless my case manager can think of something (I got her where she just got out of shcool 2 years ago.) Until now, I've been telling her what I need and she half-asses answeers with responses. Turns out, she's trained to deal with completely dependent developmentally delayed - lots of low expectation from that sector amd I exist in a big 'ol blindspot in her career.I don't feel comfortable trying to manage everything in complee isolation. I've got government waivers to pay for services at home, but I can't find people to fill the jobs. I've been dangling alone for 10 months and things are way bad. I'll go to a group home or adult foster care if it means I can get regular support and be "in" the disability comunity network.But how?
JenonWheels
JenonWheels replied to discussion RE:Forever Alone?
6 months ago
I don't think you're looking for a partner, you're looking for a friend.Loading up the checklist for a new love with - must mourn my illness with me and take care of my unpredictable health problems is going to draw in some creepy characters, so separate the two functions.You need to find separate support for your mental well being. I think within the local MS support system is your best bet because "they get it" and you'll have someone to absorb your freakouts that even you don't understand.Dating time is a separate priority. By all means, lay it out there that you have MS and things are more complicated than others at times AND respect yur body over "but I have a date" to establish good boundaries for both of you. You might find someone, you might not. The magic secret is, being is the year after the OhDear-I'm-30-and-what-have-I-done-with-my-life? Multitudes of peope your age, myself included, wonder why they dont have the relationship-career-home-family plan-financial-social thing figured out by now. You're in there with your peer group.The closest thing I can think of as an equivalent  is having hella debt that your job can't pay off and trying to stay cute and appear unworried whilst trying to date. You don't unload that on a new love, nor do you expect them to bail you out. It's not something to be ashamed about. It's something to discuss when things are calm. Folks your age or in your circles may not be mature enough to see through that kind of committment.
JenonWheels
JenonWheels joined the group
6 months ago
JenonWheels

JenonWheels

Bloomington, MN
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS
shandajo91
shandajo91 joined the group
6 months ago
shandajo91

shandajo91

,
  • Gender Female
  • Age 28
  • Relationship Single
  • Connection to MS I have MS
pnchn
pnchn joined the group
6 months ago
pnchn

pnchn

Barrie,
  • Gender N/A
  • Age N/A
  • Relationship N/A
  • Connection to MS