mogmogomgom

I love the big bubbles on the 86 retros and this colorway is undeniable beautiful, but for whatever reason I don’t see this combo 🫠

That said, I’ll purchase them when they hit the outlet lol

Me last week on ER

Nike Air Max 1 Anniversary Aqua

#TM #NMO #MOGad

I'll try to update this thing with the stuff we got from that workshop but, in the meantime, reach out for somebody if you feel alone. I can listen, if I can be of any help.

Stay safe

Stretching, listening to music, get out if you can... anything that helps you evading from these thoughts
I know this is easy to say. When pain is 10/10 I end up curling up and falling asleep, my body shots down, but the moment I put myself together, I go and cook (dang, I am so good at that lol)

You are not a failure, you're not useless, you just got ran over by some idiopathic stuff nobody thinks it will get you. You are still alive and need to find the way to not fall into the well.
I try to stay focused on my breathing, although spasms make their way to fuck my focus up

My psychologist organized a workshop on how to deal with pain, to get away from recurring thoughts (#rumination) and gave us some tools to work with
When you're lying on your bed for hours due to pain preventing you from doing anything, not sleeping, you must not think on how useless you feel

I've lost friends to suicide, and the powerlessness, guilt feeling of not being able to help them is unbearable, so imagine what your family would go through.
Talk to somebody, no matter who they are. Even when the pain is 11/10, when you feel hopelessness, there's always somebody who cares

I haven't accepted 100% my new self yet, but thanks to my psychologist I realized it was worth trying to endeavor and be there for my wife and daughter. One of the meds I started put me on a tight spot and this person helped me understand what I was going through and how to overcome these thoughts

Your new you is something hard to digest, especially when you are living your best life and it al suddenly goes to hell. I could not get back to work because of the pain and the issues with my vision, I almost died 3 times in less than six months, I thought I was never going to see my baby again

I started talking to a great psychologist. After I talked to the head of pain psychologist, I saw that that was not what I needed, so I started seeing him and he helped me understand how pain and sleep deprivation interfere with your life, how meds mess up your mind and it all leads to depression

I never knew what was feeling depressed was like. After the first year, the head of neurology at the hospital I was being treated said to me 'why don't you talk to a psychologist?' and I was like 'WTF, I am OK!'. My wife and this doctor looked at each other and got back to me 'you should try'

#Depression is a symptom derived from neurological disorders. I was on cloud #9, we were expecting a baby and just got a great promotion. Life was great and out of nowhere, I could not even walk, pain and spasm took over and my former neurologist put me on so many meds I was knocked out

⏬ thread ⏬

... and always, ALWAYS, for any new symptom lasting 24 hours, call your Neurologist asap -or whoever is your specialist- and let them know about it. If you feel things are getting worse go to ER, let them know about your condition and what is going on, it can make a huge difference in your status

The next thing is, if you feel you are not being listened, look for someone else. In my case, it was like night and day. I went from an old school neurologist who was only giving me more and more pain meds instead of going to the root of the problem, to work with two of the best specialist in the US

Medical Professional Network Find a medical professional specialized in rare neuroimmune disorders (ADEM, AFM, MOGAD, NMOSD, ON, and TM) in your area.

The first and best advise I can give for anybody with a neurological disorder is to look for an specialist in your disorder to get a proper diagnosis and the best treatment

For #MOG #NMO #TM #MS #Lupus and many others, you can use the #SRNA medical network to find a specialist that may help you

Welp, looking to hear from people with #TM #NMO #MOG #MOGad #MS experiences to deal with #nervepain #fatigue #spasticity #nystagmus #PTSD

I will share my personal experiences* as well

*Disclaimer: Things that worked, or not, FOR ME, so do it at your own risk or talk to your doctors before

Nike Sportswear Therma-FIT Tech Pack Men's Winterized Crew Find the Nike Sportswear Therma-FIT Tech Pack Men's Winterized Crew at Nike.com. Free delivery and returns.

Not MS but NMO/MOGad and yes, pain is excruciating in hot, humid days. I’ve found that this nike sweater helps with high temperatures -sometimes my body gives a crap-, but not if it’s really humid.
Also, it gets worse with drastic weather and pressure changes.