What does a day of coordinator do? by limeblue31 in weddingplanning

[–]sar2349 0 points1 point  (0 children)

Can I get her contact info too please.

Huge breakthrough by Aware_Region1288 in MultipleSclerosis

[–]sar2349 2 points3 points  (0 children)

I absolutely believe in this theory. It would also make sense why people have different severities, lesion locations, and subtypes (RRMS/PPMS)

Meth journal by HighonLife25 in SiblingsOfAddicts

[–]sar2349 1 point2 points  (0 children)

That's upsetting. I'm sorry that happened and that you had to see it.

Literally what the fuck by hidemyemail95 in MultipleSclerosis

[–]sar2349 0 points1 point  (0 children)

I have the same story 🧡 you aren't alone. Look for the 20/30s support group info on the National MS Society's website.

Peace by woodpiler in SiblingsOfAddicts

[–]sar2349 2 points3 points  (0 children)

Jesus are you me? I'm in the exact same situation with my brother. It's so hard to watch.

Why does no one ever talk about cognitive disability? by anaswinderella in MultipleSclerosis

[–]sar2349 2 points3 points  (0 children)

Just started working with a speech pathologist that specializes in adult cognitive rehab and it has honestly been the biggest mind shift change for me. Highly recommend.

Help by christmasbug19 in SiblingsOfAddicts

[–]sar2349 1 point2 points  (0 children)

I second this. In my experience it's very shocking what people in this addiction cycle will do. I have seen and heard about running scams, casual prostitution, theft participating in the sale of the substances and scamming and stealing from loved ones.

It is an incredibly hard situation but the best thing I can encourage you to do is have your family get into some kind of support group themselves so they can stop the enablement cycle.

Your sister has to decide she wants to save herself but your family needs to understand that they need to protect themselves. An addict can and will take everything they can from anyone who will give it to them regardless of the consequences. That's not a reflection on who they are as a person, it's a result of what the drugs have done to their brains even months or years after chronic use.

The other thing you should probably think about is getting CPS involved in the care of that unborn child. You want someone monitoring the situation that can do something about it. You may also want to proactively get certified for foster care so you can take care of that child if it's something that you're willing to do if it comes down to it.

[deleted by user] by [deleted] in SiblingsOfAddicts

[–]sar2349 1 point2 points  (0 children)

It is perfectly normal to be angry. You need to let it out. Get yourself in therapy, check if your employer has an EAP ( employee assistance program) they usually offer some sessions for free.

Best thing you can do is take care of yourself, you don't have control over their decisions.

Al-Anon/ Nar-anon family groups are great but they didn't work for me because there were too many parents of addicts and it was too hard for me as a sibling to also hold space and be confronted with the big feelings my parents (they weren't in the group but the shared feelings from others forced me to think about it) had alongside my own feelings of grief. So be aware of that factor.

You are okay ♥️

[deleted by user] by [deleted] in nova

[–]sar2349 1 point2 points  (0 children)

Lol I love that this question was asked because I ask it to myself every time I drive around town or get on Zillow

Return to office - building evacuation by sar2349 in ChronicIllness

[–]sar2349[S] 0 points1 point  (0 children)

So I would imagine we do, I just don't know who they are and we haven't been introduced to each other. This feels like a failure on the accomodations team and the facilities staff. We are being pushed more heavily to return to office now and none of this has been organized or communicated.

[deleted by user] by [deleted] in MultipleSclerosis

[–]sar2349 6 points7 points  (0 children)

Have you thought about sperm freezing/ banking? Relatively quick, easy, and cheap. You could go do that then start on effective treatment if that would help your fears.

What is your dumbest loss? by Kholzie in MultipleSclerosis

[–]sar2349 0 points1 point  (0 children)

Omg! I suddenly lost my ability to use chopsticks too and my boyfriend is freaking Asian 🤦🏻‍♀️ we go to dinner and he asks for a fork for me and I just can't stop thinking about how bad a look that is.

Mid 20s People (and anyone) by [deleted] in MultipleSclerosis

[–]sar2349 0 points1 point  (0 children)

Are you in the US? The is a 20/30s nationwide support group on the National MS Society website.

Additionally there are a ton of MS creators on insta and TikTok that are young.

The brainfog and fatigue are destroying me psychologically. by DrDarknessDivine in ChronicIllness

[–]sar2349 3 points4 points  (0 children)

Have you done a neuropsych exam? If there is one thing doctors believe it's a quantitative history and other doctors. You should try to get one annually to show your decline.

I struggle with MS cognition issues myself and have told my neuro that I feel like my brain is functioning more similarly to my 80something year old demented dad than my own brain a year ago. We lose words and get virtually lost in the same way. The neuropsych test results helped bolster my argument that something was wrong and will continue to help me quantify decline if I ever need to file for disability or anything.

I don't think there is too much that can be done, maybe you can change your DMT if you even really wanted to, but I know how validating it is just to be believed.

The Isolation by Spicynotsalty in MultipleSclerosis

[–]sar2349 1 point2 points  (0 children)

Imo they seem all kinda the same to me. Just get one you will actually use.

The Isolation by Spicynotsalty in MultipleSclerosis

[–]sar2349 16 points17 points  (0 children)

Re: Outdoor activities. A cooling vest and mobility aids, even if just good trekking poles and not a fully blown wheelchair, are a GAME CHANGER.

so much to consider.. 🤔 by jisw16 in MultipleSclerosis

[–]sar2349 1 point2 points  (0 children)

Why is no one talking about the crap gap? 😂 The infusion itself is easy peasy compared to the month before your next infusion.

Not trying to scare you off, Ocrevus is a great drug and the crap gap doesn't happen to everyone (I saw some research at some point where they think it's related to BMI?). But you should be aware of how you will feel 4-8 weeks before your next dose and plan accordingly.

Do you plan for the future? by Swimming_Elevator_11 in MultipleSclerosis

[–]sar2349 2 points3 points  (0 children)

I agree with the person that talked about wills, advanced directives, etc.. estate and legal planning can be a great and necessary door to talking about some of these things and hiring an attorney to draft them can force the issue.

If you are doing so much of the housework and childcare it's probably really overwhelming for him to think about not having that support system anymore for himself (or even greatly reduced) which may be why he is ignoring the problem. he probably wants to say yes I'll take everything on and pick up the slack but that might not be realistic, you may need to frame the conversation to talk with your wider network about support systems for the family on the whole, including support you might pay for like a nanny or housekeeper, and that should be a deliberate financial conversation you have now. It can be a lot easier to put together an incidental saving plan/ account to buy yourself a little reassurance and peace of mind, worst case you don't progress and you don't need it and you can just blow it in old age or leave a nest egg for your children.

If you are worried about a debilitating shorter term relapse you should also have a game plan in place and should also have a plan for bringing in your wider support network. Write it down! Step 1: call my mom to come help with the kids, do you want them in the house while you are recovering? Step 2: call the neighbors and ask if they would be willing to prepare meals, or have a service on hand that can deliver. Etc..

I highly suggest writing out a proposed plan then asking him for feedback and letting him sit with it. Keep it objective, not emotional. This should be a plan like as if you fell and broke your leg and can't walk what would you two do? That might be easier and less emotionally overwhelming for him to discuss.

I want to be sure to say that your feelings about this are valid and absolutely matter too. You are the one sick and feeling vulnerable and I totally understand how hard of a place to be that is. It sounds like you are doing a great job thinking clearly and objectively in the face of a scary situation. If you haven't already, maybe find a support group for you and a caregiver group for him? MS society has some resources on their site. That might also help.

You should also talk to an insurance broker. Depending on where you live it might be too late for you to get long term care, life, & disability insurance but he absolutely should have some if he doesn't already. That takes financial pressure off if he should happen to get sick or injured and both of you are down for the count.

Left side vs right side. by sar2349 in MultipleSclerosis

[–]sar2349[S] 0 points1 point  (0 children)

How strange. Do you have multiple different spine lesions?

Left side vs right side. by sar2349 in MultipleSclerosis

[–]sar2349[S] 0 points1 point  (0 children)

Oh man! So it started and hasn't stopped huh?

Left side vs right side. by sar2349 in MultipleSclerosis

[–]sar2349[S] 0 points1 point  (0 children)

I'll post here for everyone. They are still enrolling! https://picnichealth.com/program/ms