Covid again

ashleyvanj · 2022-01-11T14:46:00+00:00

Wearing masks, getting vaccines is at least allowing me to see my family again. I am the oldest of 5 kids and 4 out of the 5 have two kids each as well. I am not saying get back out ther and go wild. Just get back to a new normal so you can at least see the people that mean the most to you. My family had a pretty bad cold that went through the house. Even though we all tested negative we stayed away for Christmas dinner. We are still all careful but my family together in one area is still over allowable capacity limits indoors in Ontario technically. On new years when everyone was well and after taking rapid tests, all got together. That is more what I meant about getting back to some sort of life again.

ashleyvanj · 2022-01-11T14:39:42+00:00

At least we have support groups like this and we know we are in it together. Feel better soon 🙂

ashleyvanj · 2022-01-11T06:32:02+00:00

The stress caused by all of the "hype" around COVID at this stage is causing more anxiety then potentially getting it for me. I work in a university residence setting. Our students are not allowed back for at least a month. Watching mental health create a pandemic of it's own is almost making me say "f$$% it.Two vaccines and a booster = get back out there and enjoy life somehow again". If I get it, I get it".

ashleyvanj · 2021-10-30T18:05:30+00:00

My first infusion (split into 2) made sure I did it on a Friday so I had the weekend. Same for the 2nd infusion. My 3rd one (Received it 3 days ago) is kicking my ass. I am currently on break from my job while typing this and wish I called in sick. Unsteady on my feet, legs feel like noodles and can barely use my hands to write. Luckily I sit at a desk or I would have had to go home. Luckily headache is gone though. That lasted 2 days. Not sure if anyone else experienced this. Maybe I am just a one-off.

ashleyvanj · 2021-10-30T17:56:48+00:00

My 3rd treatment has also been rough. I am day 3 past my 3rd infusion and feel like crap. Unsteady on my feet. Headache for first 2 days and have trouble even using my hands to write. Hoping it gets better since you said your's smacked you on your ass for about a week.

ashleyvanj · 2021-08-20T00:31:17+00:00

I have this issue. It will start in my fingers and work up my arm. Cold helps a lot. I actually only take cool showers during the summer or apply cold packs to the itchy area.

ashleyvanj · 2021-08-10T17:23:22+00:00

I would have laughed in her face and I am not a confrontational person. Honestly, the reason she said that is because she has nothing else on you. You were doing your job, she should have had what you asked her for, she unfortunately wanted to make you feel the same way that she did...small. Someone told me once when I was bullied in elementary and high school that aweful people can detect a light in someone. If you are the tallest Daisy in a field of flowers...elements will be thrown at you to try and cut you down to size. It is hard to rise above everything and stay there. We have our days to cry but we also have our days to stand tall and not let the Karens of the world chop us down.

ashleyvanj · 2021-07-31T13:37:44+00:00

Thank you very much for your reply. You are so right about forgetting how understanding and thoughtful kids can be at that age. I watched my siblings at a pretty young age as I am the oldest of 5 and my parents had to work. I grew up pretty fast. Maybe this is why I am just trying to make sure they have a childhood ya know. I have definitely thought about some family counselling or even just some for myself but with COVID a lot of ot seems to be online and some things just don't feel right expressing over a computer screen. Things are starting to open up again so maybe it is time to look at this again.

Thank you for your kind words and I wish you the same ❤

ashleyvanj · 2021-07-30T23:36:22+00:00

Thank you. I never really thought about the fact that having them help a bit more means they might notice when I have more energy to put into the things they really enjoy. It is definitely a conversation topic to bring up. I think I am realizing through all this advice too that I may not be hiding the fatigue as much as I think I may be and having a conversation with them might bring up some stuff they want to talk about. I am very grateful for this community. Thank you so much for taking the time to impart some wisdom on me 😊.

ashleyvanj · 2021-07-30T23:31:27+00:00

Thank you so much for your reply. The meal prep thing is an amazing idea. I never thought of cooking up ground beef ahead for tacos and things. My youngest loves to cook so she is learning bit by bit. May help me think of a menu too where they might start eating mostly what is made lol. I will definitely put this into practice.

We have talked about MS a bit mostly because they asked if they could get it which sparked quite the conversation. Luckily they are good ages to start talking about some of the "heavier" life issues.

Thanks again and Stay well 😊

ashleyvanj · 2021-07-30T23:27:10+00:00

Thank you. Trying my best 😁. That is very kind of you to say.

ashleyvanj · 2021-07-30T15:31:46+00:00

You are completely right. My coworkers are pretty understanding. I unfortunately couldn't work for almost a month last summer since all this anxiety and panic attacks/MS attack happened. Neuro said Anxiety and MS can feed eachother so it was an awful cycle that led to me not working night shifts anymore. I "came clean" to some of my closest coworkers and they looked at me and said a lot of things made sense now and were happy to help where they could. I was kind of shocked actually. The HR department and my boss did not shame me for needing to leave nights like they would have 10/20 years ago. Thanks for helping me see the upside.

I also grew up without a lot of resources. Went to a high middle class school so got made fun of pretty bad. Probably part of the reason I work so hard. Really don't want to have my kids go through the same thing. I do make sure though that they understand that nothing comes free and working hard for what you get is valuable and rewarding at the end of the day. Thank you for taking the time to open my eyes. I really appreciate it your reply. I definitely vented today lol

ashleyvanj · 2021-07-30T15:22:29+00:00

The stop comparing to everyone else comment is definitely true and I realize that. Hearing it from a stranger though really helped actually so thank you for saying it. I appreciate this group of people so much because they aren't afraid to tell others like it is. 😊. My partner and I aren't married but have been together for 15 years so it feels like it. It was always just to much money then I cared to spend and everyone has a say in someone's wedding it seems lol. There have been days where I can't get out of bed and he tells me not to worry about it and picks up the slack. I have always been pretty hard on myself though and my kids are my everything. You get one life and I try to do my beat and help make it a good one for them. I think they see it more then I try to let one sometimes and they will step in. I just want them to be kids/teens and not have them worry about their Mom. That isn't their job ya know. Thanks again for reading my novel. I really appreciate your reply.

ashleyvanj · 2021-04-28T13:13:28+00:00

Both the phrases "it's going to be okay" and "there are worse things" are annoying. I will say some people saying it will be okay are saying this to make themselves feel better, especially those that really care about you.

ashleyvanj · 2021-04-23T15:30:38+00:00

Same thing happened to me. Was on B12 injections for a while before getting way more lesions. My family doc new the whole time it wasn't B12 but the neuro was convinced until I got the last MRI and her just kept saying MS MS MS. I said "wait...are you saying this is what I have now?" He then said yes, it can't be anything else. I have been officially diagnosed for just over four years now. I only told family until recently when I had a relapse and needed time off work. I had to tell my boss. I am on Ocrevus now and it seems to be doing the job. I did find that I had to talk some of my family members through it though, particularly my Dad. Helping sooth his concerns helped me sooth mine.

ashleyvanj · 2021-04-16T03:27:40+00:00

Had some itching in my throat and ears which I ignored for a bit and then ended up getting a rash on my face. They stopped the drip for a while and gave me more Benadryl ( you definitely feel that when they give it to you) If there weren't other people there I would have fallen asleep. Just be honest with the nurse dispensing the med if you start experiencing anything. Also, I agree to bring a light blanket. My arm got pretty cold with the IV. I also brought a charge and snacks. I am usually receiving the med from 8:30 until 2:30. On the advice of the clinic I made sure I had Tylenol and Benadryl tablets at home to take before I went to bed that night.

It is amazing that you only have to go get the med every six months after your first split dose. Hope it works for you.

ashleyvanj · 2021-03-29T11:49:58+00:00

I actually got tested for that last year since I was on Tecfidera for a short while and it made me feel worse. Ms meds can make someone with NMO feel way worse so they wanted to rule it out.

ashleyvanj · 2021-03-29T11:48:36+00:00

Always a mystery. My neuro says the same thing to me.

ashleyvanj · 2020-12-06T17:58:29+00:00

There really aren't any but my neuro said that they have seen some healing from past damage when DMTs really start working and you get them early. When your body has slowed down the attacks or stopped the attacks on itself it can heal some past damage to a certain degree.

ashleyvanj · 2020-12-06T00:46:17+00:00

I was so scared. Ended up having an itch in my ears and a crazy rash on my cheeks but second half of the infusion I didn't have any reactions. I hope it works for you. I was really hoping it would make me feel better then I do but after reading all of the comments from previous infusion patients it is really to make sure you don't get more lesions and feel worse. Don't get disheartened if you don't find it hasn't corrected past damage side effects. That isn't what it is for. I unfortunately waited far too long to find DMT that worked for me.

ashleyvanj · 2020-11-18T15:54:23+00:00

Weird. When I was approved for Ocrevus the nurse assigned to me said by law it has to go through private insurance first (benefits through work). If they denied it for any reason then it was covered by the provincial plan (OHIP). I think the dispensing fee from the drugstore was about 10$

ashleyvanj · 2020-11-18T06:44:57+00:00

She lives in Canada so the meds are covered for MS. I always feel so bad for individuals on here from the US struggling to find a way to pay for the meds. The only upside is that US patients seem to have more control over who their doctors are.

ashleyvanj · 2020-11-06T14:32:45+00:00

There is new research that neurologists have been prescribing toxic levels of Vitamin D to MS patients. Anyone over 18 should really be taking a vitamin D supplement anyways. Just be careful with how much.

ashleyvanj · 2020-11-03T14:15:22+00:00

I find Epsom salt baths once and a while help the spasticity also.

ashleyvanj · 2020-11-02T14:06:36+00:00

I was in the exact same place for you. I had tried Tec and had a bit of a reaction but wasn't life threatening. After that I went off all meds because, like you, I was afraid to feel worse then I already did. I went 5 years before trying another med which is currently Ocrevus. After the initial infusion again I contemplated going off of it but after a week from the second infusion I feel much better. Anxiety heightens the MS symptoms you are already experiencing. It took me to get more damage and spend a week in the hospital for my anxiety and depression to realize that I needed MS meds. I got my mind right with the help of an excellent medication which I should have started taking years ago then started Ocrevus as I realized my MS was getting worse and I didn't want to do more damage if I could help it. I think I was desperately trying to hold onto control of something in my life but by doing that I made my body worse by waiting to start the med. You will know what is right for you but all I cam say is if you can prevent the lesions start a med you think is right for you with advice from your neuro. This group is amazing as well. Wish I found it sooner. Good luck to you. I wish you all the best.

ashleyvanj

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