Oh well, Bad day

[Sggmcswain]

Well Ocrevus didn't help me today. Things happened today that even made my sister cry. She even said that I am beyond her understanding. She is going to have to find so

[Sggmcswain]

somewhere for me to live..Today was REAL bad

[Diva1976 in reply to Sggmcswain]

I am very sorry to hear about you having such a bad day. I hope things turn around for you!

[melack01]

I am so sorry for what you are going through. I have a wonderfully supportive husband but there are times I wonder if he's going to be able to hang on. The hard things to deal with have only been since April. How is he going to feel about it after years or if it gets worse. Also I hate having him see me that way. Did you ever find nurses/caregivers who would come into your home? That would probably help with the stress your sister is feeling?

Once again I am sorry about your situation. Sending hugs and prayers.

[Sggmcswain in reply to melack01]

No on the nurse/caregiver. Thank you for asking

[Bygonelines in reply to Sggmcswain]

Have you talked to your insurance company? You need to ask to be assigned a nurse case manager. They are on your side and help you get the care, supplies, etc that you need. They advocate for you with the insurance company. Mine has been a huge help! As a person with a chronic illness you are elligible for one. The insurance has to provide free of charge so most don't tell you this is a benefit that is available to you.

You could also try calling your local 211 service and asking them. They can often point you in the direction you need to go. Many services for the elderly also work with the chronically disabled. Good luck.

Jacqui

[Sggmcswain in reply to Bygonelines]

I have Medicaid - I don't believe they do that???

[Bygonelines in reply to Sggmcswain]

Check with them. Some states Medicaid do have nurse case managers. The worst that can happen is they say no. What state are you in?

[Diva1976 in reply to Sggmcswain]

Yes Medicaid will even pay your sister to care for you. Therefore, you should be able to get someone if too much on sister. Case worker should be able to assist.

[Sukie427 in reply to Diva1976]

Bygonelines , do you happen to know off-hand whether Medicare has that service? I know that I had it with my commercial insurance, but have no heard about it since I got on Medicare. I'm too busy fighting with the damn government to get my meds! Sukie427

[jimeka in reply to melack01]

melack01 i understand how you feel. My husband watched his mum have to sit and sleep in a chair due to rheumatoid arthritis for 25 years. Now he is having to watch his wife decline steadily. I have gone so far as to offer him a divorce, but he says no, but it makes me feel guilty. Blessings Jimeka 🦋 🌈 🤗

[melack01]

I see all those "Visiting Angels" commercials on TV and you wonder Are they really out there. Of course they are, but finding them and paying them is another story. My stepdaughter has done that but now works in a care facility. My sister has in the past also.

I wish I had words that would alleviate your pain. But I guess sometimes all you can do is listen.

[Sggmcswain in reply to melack01]

Thank you for that

[Jesmcd2 CommunityAmbassador]

Sggmcswain I'm sorry that things are going so hard for you! MS is such a confusing disease for us! Let alone the people that care about us. 😊

If I remember correctly, you were recently Dx'ed? I could be wrong.

There are all kinds of resources for both of you to learn more about what's happening to you.😊 And how to handle it.

I also found this for you. resources.mymsaa.org/ It's called My MS Resources Locator by MSAA full it out, and it should help you with your needs.😊

Also, this community is open to our wonderful caregivers also! So your sister is more than welcome to come and chat with us! 💕 it might help her understand a bit more of what's going on with you!😊

I hope this helps some. 😊

~Hugs n Luvs ~

J 🌠👻

[Sggmcswain]

Thank you for the information

[Sggmcswain]

Diagnosed October 2008

How do I get to the resource seach page. Lost it

[Jesmcd2 CommunityAmbassador in reply to Sggmcswain]

Sggmcswain here you go my friend 😊

resources.mymsaa.org

J🌠👻

[Hidden]

Have you looked into aging and long term care. Has your doctor sent you to someone to evaluate your ADLs activities of daily living. Having a caregiver is the best. It can take alot of stress off you and your family. Have your nuero send msaa, Ms focus, Ms society a copy of your diagnosis. Sign up and get help. It can take years to go through all these hoops but as you get worse. Which it sounds like you definitely need help. They are there to help. Talk to MS society MS navigator. Some of old links that had application s for help are not working because now you just email or call for help

[Sggmcswain]

Thank you - I will make the attempt

[Hidden]

Sometimes I just have to right down all the notes of things I have to do and wait for a good day to actually do them.

[SlmHarris]

So sorry! Try to keep your head up! We are all here for you!

Is this your first Ocruvis? If it is try to remember it takes a few months to see any help it will give you.

Prayers things start looking up!

[WAshingtongirl]

Sggmcswain , you've received some good info here. I hope you're able to find some assistance. It's hard to hear what you are going through, but we're here to listen, to try to help, and encourage when we can. I am praying today is a better day for ALL of you. Sometimes those bad days hit us (and those we love and live with) really hard, and things are said that are later regretted and retracted. Praying for you. 💕

[dianekjs]

Sggmcswain , I’m so sorry today was so rough. Ocrevus hasn’t had time to kick in yet, so remember that you may well see improvement over the coming months. Try to keep the faith and if you can avoid making major decisions until you see how you’re going to respond to the drug, that would be best. While you might start to see benefit by 3 months, it may take 6-12 months before it’s really taken full effect. I’m 4 months past my initial half-dose and am seeing positive signs - more energy, more good days and better good days, and my walking is better. I still have bad days too, but they are fewer at this point so I’m cautiously optimistic. I agree with others’ suggestions for getting additional help for you and your sister, it’s out there if you’re able to make the effort to find it. Hang in there and reach out here as needed. You are in my thoughts and prayers. 🙏🏻🍀🌹

[Sggmcswain in reply to dianekjs]

Thank you and prayers are always welcomed!

[Sukie427]

Sggmcswain , hope things improve for you soon. Sukie 427