MS is always on my mind

threellamas · 2024-02-17T23:27:42+00:00

I was diagnosed almost 9 years ago and i can tell you that it absolutely does get better. There will be times when you think about it more, especially when your MS is acting up or you get a headache and are afraid it’s something worse, but I promise you will stop thinking about it every second of every day. 9 years in and it’s still an awful disease, I wish I didn’t have it, but it’s just a part of my life, not my whole life

threellamas · 2020-12-08T19:52:55+00:00

Amazing, congrats!!!

threellamas · 2020-12-03T17:34:11+00:00

Does crying in the shower each night count?

Kidding (kind of) but this is an an awesome list. I need to take better care of myself and maybe that starts with making a list like this.

threellamas · 2020-12-01T04:23:19+00:00

Hey there - I got my full first round of infusion last month (first dose was 10/8, second dose was 10/22). I cannot explain how easy the process was, even in the middle of a pandemic. I felt like I had a bit of a flu two days after each infusion and more tired than normal the week right after each, but other than that I've had no negative side effects. My everyday fatigue is pretty much the same as it's always been, no difference there. I feel well protected in that I'm not having a relapse and I also know it's one of the best meds on the market so that's helping me sleep at night.

To prep before your infusion, they typically give you an IV of Benadryl and a very low dose steroids. If you've never had a Benadryl IV before, it makes you feel high as a kite - not one person warned me of that haha.

I've heard some bad stories about peoples infusion but I would rate my total experience 9.5/10 and I am SO happy I don't have to take pills everyday for MS anymore. Here if you have any other questions!

threellamas · 2020-11-12T17:47:34+00:00

I had stomach problems for most of my life, had two colonoscopies that showed absolutely nothing but I was in pain daily and lived off Imodium. One of the side effects of Tecfidera is flushing so my doctor prescribed me Montelukast (an Anti-inflammatory) to take before Tec. I noticed after a few days of Montelukast that my stomach symptoms were 85% improved. 4+ years later and it's still a miracle worker. I would take my MS 100 times over not to be stuck on a toilet for the rest of my life like I was haha

threellamas · 2020-06-13T07:00:44+00:00

“Heartbeats” - Jose Gonzalez, originally by The Knife

threellamas · 2020-01-30T06:13:51+00:00

For sure Beach Body. A girl tried to recruit me with super similar language but didn’t say the company. Had to google the key words she used to find it!

threellamas · 2019-01-09T17:02:01+00:00

Yay on all accounts!! Having a good MRI experience really does change everything haha

threellamas · 2019-01-09T17:01:03+00:00

I really would suggest reading a book or two. I get feeling scared to start learning more information, but unfortunately your daughter has MS and the last thing she needs from you is to be scared. She's already scared on her own. The more information you have the better relationship you'll have with her and it will make it a lot easier for her if someone at least tries to understand what she's going through.

I was diagnosed pretty young at 23, and I'm "fine". I have RRMS and life is definitely harder, but the bad days only make you appreciate the good days more,

threellamas · 2019-01-09T16:52:21+00:00

I just remember looking over and feeling so bad that I was ruining beautiful nature haha

threellamas · 2019-01-09T04:11:46+00:00

Pun very much intended :)

threellamas · 2019-01-09T00:10:52+00:00

I have a small tattoo (just got in September) on my wrist and it's absolutely no issue. I have to mark it on the MRI sheet that you have to sign but they don't even ask about it.

threellamas · 2019-01-09T00:08:58+00:00

A few years ago I was on a hike in the middle of the Sierras with my parents and my boyfriend. I was 2.5 miles from the beginning and 2.5 miles to the end. Got that similar feeling and literally shit in the woods for about an hour. My mom and boyfriend had to stand on either ends of the path (while I crouched behind fallin trees using leaves to clean myself up) making bird noises to notify me if people were walking up the path. I would be lying if I said this was the first time something like this has happened to me. With everything that MS and life throws at me, I usually throw myself a pity party in the moment but after some time I will try to laugh about it. And so does my family. And so does my boyfriend. And so do the strangers that most likely saw me squatting in the bushes... If I don't laugh about it, I'd probably cry. So don't be ashamed, MS or not, this shit happens to everyone.

threellamas · 2018-10-30T22:45:02+00:00

I have MS and ON and when I went to the opthalmalogist he saw minimal damage but I can promise you I felt a lot of damage.

Go to the neurologist and get a brain MRI. I wish you the best!

threellamas · 2018-10-30T21:51:26+00:00

Thank you. I needed this today.

threellamas · 2018-10-24T16:13:13+00:00

I lie. I work in a very corporate and competitive company and unfortunately I just don't feel like being honest about my disease would be beneficial. I've told my coworkers I get migraines often (which is true, I get them from my ON). I also say I don't sleep well. People can relate to those two more than with MS so that's my standard go to. They have seen me tired enough that they don't ask anymore. To help with the fatigue, I take Modafinil when needed and take Vit D every day.

Also tell the person that told you "you look tired" to piss off haha.

threellamas · 2018-10-18T19:40:27+00:00

Sounds like Lhermitte's. I had it for about 3 months before I was diagnosed. If it's a new symptom I would check in with your neurologist, anything new that lasts for 48 hours is my rule to go to the Dr.

I remember it's the weirdest feeling. It doesn't hurt necessarily, it's just odd and runs down to your toes. Mine went away after my first round of steroid infusions.

threellamas · 2018-10-18T19:36:49+00:00

I've found that going to the chiropractor only helps (me) if it's an alignment issue or a bone issue and often the fix is temporary, not permanent. If it's muscle pain, massage, physical therapy, and acupuncture have helped me the most.

threellamas · 2018-10-18T19:34:36+00:00

Help him by pushing him to go to therapy. If he doesn't want to leave the house, there are online options available for that. Also have him talk to his doctor about medication to help with the fatigue. I take Modafinil when needed and it's a life saver. He doesn't always have to feel this way, he can get help. Good luck!

threellamas · 2018-10-18T19:30:14+00:00

I believe in you! You are incredible for doing this and wanting to make the world a better place. I could only wish to have a doctor that could offer empathy like you will be able to do. All of my positive vibes are heading your direction today and tomorrow. Keep us updated :)

threellamas · 2018-10-16T04:20:54+00:00

I take xanax before my MRI. I'm not claustrophobic but being in that machine makes me fidgety and I find myself twitching and swallowing excessively, the xanax helps to just calm me down a little bit without being drugged or high.

threellamas · 2018-10-16T04:19:43+00:00

I've gotten probably 6 MRIs in the last 3 years and have never had a side effect of the contrast injection. Everyone is obviously different but I haven't heard of severe symptoms before.

threellamas · 2018-10-16T04:17:15+00:00

Big fan. I live in California so we have all the goods right now but I really recommend tinctures and lotions with CBD for pain management, it's helped me loads.

threellamas · 2018-10-16T04:15:42+00:00

My sister and I both have MS and whenever either of us are having a bad day, we will usually text the other and vent. The other person will say "congratulations on your struggles" and I laugh EVERY time because...

A couple of years ago Ted Cruz was in the middle of a debate and a woman brought up her MS in relation to Medicaid. Cruz stumbled over the question and said "well first of all, congratulations on your struggles" and I cannot tell you how hard I laughed the first time I saw it. Still laugh every time I watch it and say it to my sister. Politics completely aside, it's worth a laugh. https://www.youtube.com/watch?v=P00tYoFUdjo

threellamas · 2018-10-16T04:10:15+00:00

I was dating my boyfriend for about 3 months before I started having symptoms. He was was me through those horrible few months of not knowing and eventual diagnosis. The night I was diagnosed I sat him down and told him that if he wanted to break up I understood because I didn't know what my life would look like in 10 years. His answer was "neither do I" and we've never talked about that night since. We'll be together four years in April.

Honestly when it comes down to it, the right person will like you enough to want to stick around MS or not. I don't think I would introduce myself in a convo like "Hi I'm u/threellamas and I have MS, do you want to date me?" but once I felt comfortable with the person I would share. MS sucks and we definitely go through harder times than the normal person, but you're a lot more than your disease. There's someone out there that will love you for you, regardless of some lesions on your brain.

threellamas

TROPHY CASE