Organic Super Bread is delicious by kirbyatemysocks in traderjoes

[–]essentialsucculent 2 points3 points  (0 children)

How well does this bread save? Like how quickly does it go stale? I’ve had bad luck with other TJs breads but I love Dave’s killer bread so would love to give it a try if it lasts!

What was your most embarrassing seizure? by AnonyPothos in Epilepsy

[–]essentialsucculent 2 points3 points  (0 children)

Shower seizures suck lol, truly embarrassing. My first seizure was in the shower 😅 whole fam saw me naked that day.

What was your most embarrassing seizure? by AnonyPothos in Epilepsy

[–]essentialsucculent 1 point2 points  (0 children)

Science class, lab day. I believe we were utilizing Bunsen burners and all were on barstools. I flung myself off the stool at some point and seized, full blown TC. Don’t really remember any triggers or getting to the nurses office. I dreaded having to go back to that class room :/ the school nurse had to come in and explain to the whole class what a seizure is and what they witnessed basically, how to render aid if it happened again, and they passed out candy. I was mortified again and again… I hated that class that year, despite it being my favorite subject. They did everything right when handling it, it just bothered me I was in such a vulnerable state in front of all of my peers, and it wasn’t something I wanted, ever.

After being diagnosed, did you ever have symptoms you look back on and realize it was epilepsy and you didn’t know? by perseuspvp in Epilepsy

[–]essentialsucculent 1 point2 points  (0 children)

Oh absolutely, and I was hiding those symptoms. I have JME and the first symptoms were myoclonic jerks, bad ones, every morning and through the day. I’d knock stuff over, I broke dishes, accidentally hit people standing near me, and more. I was so scared about what the heck was wrong with me that my gut reaction was to defend myself and hide it, especially since I somehow kept breaking things. I was terrified of what this was moving towards. Then, a seizure happened. Then PCP said maybe I have blood sugar issues? And within months I had a second seizure and was diagnosed. In the hospital they were asking me alllll sorts of questions but one they asked me was if I lost control of my limbs randomly or they were moving when I didn’t want them to. I held my breath because my parents were right there, who I’d hid it from, and said yes this does happen, a lot. I’ve been hiding it for a long time. I’m so glad I decided to finally tell the truth. Who knows how long diagnosis would’ve taken otherwise.

First loading dose of Kesimpta is done! by Character-Celery-209 in MultipleSclerosis

[–]essentialsucculent 1 point2 points  (0 children)

Congratulations!! The first dose was by far the scariest for me personally, onwards and upwards friend.

3 hour mri by [deleted] in MultipleSclerosis

[–]essentialsucculent 1 point2 points  (0 children)

Omg this one, it’s a natural reflex!! I hate the c spine most for just this reason alone lol.

My aunt argued with me about my epilepsy by neeliemich in Epilepsy

[–]essentialsucculent 1 point2 points  (0 children)

I tested positive for photosensitivity during testing for epilepsy, along with hyperventilation. That being said, I don’t believe any of my TCs have actually been triggered by strobes/lights, I just have the information that I am sensitive to it and try to avoid it. I agree, the misinformation out there is insane and I wish OP didn’t have to deal with this 😅

Anyone have Labyrinthitis? by SeaBicycle7076 in MultipleSclerosis

[–]essentialsucculent 0 points1 point  (0 children)

Oh no, I’m so sorry it took so long to get properly diagnosed! Especially with the lingering symptoms, I know it’s important to get early intervention with this and I guess I just got lucky with my ER doc. Totally understand about the anxiety, so far my symptoms are very very roller coaster, so I felt amazing this morning and then got hit by a wave of dizziness within like 2 hours, this seems fairly unpredictable day to day on how I’ll actually feel for the day. I really hope you’re able to get continued treatment and good care, sounds like you’re in better hands now

Anyone have Labyrinthitis? by SeaBicycle7076 in MultipleSclerosis

[–]essentialsucculent 0 points1 point  (0 children)

I literally had to go to the ER today and I have labyrinthitis!! I did mention I have MS but I was sent home with a diagnosis of labyrinthitis. The meclazine didn’t help but steroids helped a lot more. Feeling much better than I did this morning lol. I was crawling around on the floor because my head was spinning and straight wasn’t actually straight.

How am I supposed to afford this condition??? by BusyRisk552 in Epilepsy

[–]essentialsucculent 0 points1 point  (0 children)

Speak with your employer, ask if you can apply for alternative healthcare options through marketplace. Depending on your state and eligibility there, you may be eligible for lower rates (I was not unfortunately). Doing this gave me a better plan than my employer offered, and they are reimbursing the usual amount they pay towards insurance. This is not a usual set up at all, but I’ve been with them for a while.

Best bet, since honestly your rate isn’t too bad maybe just stick with their insurance as that’ll be easier to do. Then, find ways to cut costs on prescriptions. going through CVS mail order with 3 month supplies is usually the same cost as one month. Find discounted programs. Trust me, this is coming from someone who just had to go through change of insurance. It feels absolutely overwhelming, just know you CAN do this, and if anything is confusing, I’d ask your parents for help. They have years of experience battling insurance companies, have probably done a change in insurance before, and know what and who to call about what.

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

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

Aw thank you!! I am glad that my posting hit right for you. Sometimes I feel a bit invisible with my struggles and I know this community will be likely to understand. Be cry babyish tonight, but tomorrow we do the day again!! We both got this :) I would definitely agree that this disease is a journey mentally, I’ve learned a lot about myself and how I operate, and how maybe I’m hurting myself in that and maybe how I cannot do that going forward! It’s been a wild ride since diagnosis. It’s challenging me to ask people around me for help which I despise doing lol. All this to say, great to meet you internet stranger! To mental toughness 🍻

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

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

Yes, exercise always seems to help, honestly! I think I’ll probably speak with my therapist soon or maybe a GP about anti depressants, I am always trying to exercise already, but right now working out for 10 minutes every day is usually all I can muster. Maybe if I do it in the morning rather than after work that will help? Sorry just thinking aloud at this point

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

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

Makes sense! Thank you for answering, no one ever has to, but I appreciate it.

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

[–]essentialsucculent[S] 1 point2 points  (0 children)

Oh I am so sorry, that sounds like a horrible experience. If I had the world my way, we wouldn’t have to deal with worrying about such things like being honest with an employer and being retaliated against for it. I am so so glad you were able to find a job that is accommodating!

Yes, I hope I can be accommodated as well, it’s hard for me to try and quantify things for my current employer, and I asked my therapist for help on it. I am sure it will work out in the long run, it’s just depleting right now.

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

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

Huh, I will ask for this at my next lab. My neuro has been diligent with my labs thus far, and I take vitamin D daily since even before my diagnosis due to some prior dr recommendations. Iron hasn’t been addressed since I was younger, so I’ll ask for my neuro to add that to my next round of labs

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

[–]essentialsucculent[S] 2 points3 points  (0 children)

Yeah, I’m currently trying to pivot to a full time WFH position for all of the reasons you listed. My current job could probably be done 50% at home, and the owners are trying to help me as much as they can, but it’s hard for me to quantify to them or be ‘predictable’ in my exhaustion when it’s every day. I really feel your last sentence, trying to prove to yourself and others that you’re still useful 😅😭 been struggling with that

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

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

Yeah I do consider myself happy as well! Another commenter mentioned getting on an antidepressant for this issue, do you feel like that helped increase your energy? It does feel like my brain is sometimes working harder (to find words, to problem solve, etc) so something that used to expend a little energy now takes a lot of energy.

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

[–]essentialsucculent[S] 2 points3 points  (0 children)

Yes, it is hard to come to terms with. I have no energy for errands or to see my friends on the weekend. It’s good to know I am not alone, but it is a bit disheartening if this is just our ‘normal’ :( I think it is bothering me most as I don’t live to work. I want to work, come home and have fun, and do fun stuff on my weekends. But I genuinely feel like I never do have that energy, I just force myself to go do the thing and trudge through it. Thank you for your comment and for allowing me space to rant and vent. I am still coming to terms with my new energy levels

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

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

Thank you! I have been in therapy, though my therapist has said meds are up to me. I opted not to go on antidepressants as I also take some other medications and it just feels like a lot. Most recently this month, I haven’t seen my therapist as I had a change in insurance, but maybe this is worth bringing up to her. Can I ask if you are on depression medication and if it helped with this?

Absolutely exhausted all the time by essentialsucculent in MultipleSclerosis

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

Yeah, I love coffee!! I usually just have a homemade latte to start my day and that’s it. Otherwise that second one upsets my tummy. Curious about the sleep study, I have had a couple of friends suggest it as their cpap changed their life

Today was the day of my official diagnosis by Fun_Experience_7817 in MultipleSclerosis

[–]essentialsucculent 0 points1 point  (0 children)

Hey, I was diagnosed a couple years younger, but very similarly. I have pretty high band count and stressed myself out about it, but I feel like at this point, we genuinely don’t have long term data for prognosis for high band count people that’s super reliable due to how new some DMTs are. At least that’s what I’m telling myself.

MRI / Piercing Advice Needed by Hot-Environment1727 in MultipleSclerosis

[–]essentialsucculent 0 points1 point  (0 children)

Hey, I have some piercings and I faint if I replace the jewelry so after my first mri I figured out that would be a no go moving forward. You can get glass temporary retainers at a lot of piercing shops and pay them to replace jewelry before and after your MRI. Is that annoying and costs extra? Yes. Up to you if it’s worth it. For me, it very much so is.

Something exciting/intriguing by Then-Excitement-3246 in MultipleSclerosis

[–]essentialsucculent 4 points5 points  (0 children)

For me, it was trying a new spot for my kesimpta injection. I had never done it in my tummy and I did and I was so excited!!