Optic Neuritis

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It's Getting Harder

Hi Everyone!
I am Amina and I was diagnosed with MS in 1998. My life progressed as normal but for the constant fear that my MS might one day look like my mom's did -- the absolutely worst form of PPMS. So far it hasn't turned out that way.

Though I, too, have PPMS, the progression was really slow allowing time to accept and adjust. In the last four years the progression has been faster. Now I use a wheelchair and and there are numerous other losses of abilities. Everything I do is difficult. The only two acute events were an episode of optic neuritis and a very recent loss of most of the strength and dexterity of my dominant hand. Of everything, the hand is the single most devastating, -- except for the abject loneliness and isolation.

I survive by being grateful that my MS hasn't ravaged my body and my self as badly as it could have. I go about my life and do what I can. I have my difficult feelings but life isnt going to stop just for me. Once I've gotten out of the bed, the ball is set in motion. No matter how sad, lonely, or miserable I feel, the ball keeps rolling because the alternative is unthinkable.

#ppms #MultipleSclerosis

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Mercer County NAMI Walk

Hi Everyone! I am not sure where any of you are located, but on May 18th 2024 there is a National Alliance of Mental Health walk that I participate in every year.
I was wondering if there is anyone here who would like to join my team? My team is The Mighty Minds. :) We will walk to help stigma on Mental Illness. If anyone would like to join or donate to my team I will put the link below.

It would be so cool to have you guys there. I'd love for anyone to be a part of Mighty Minds!!!

www.namiwalks.org/participant/Rachel-Tepper

If the link doesn't work you can message me on here and we will figure it out. I'd love for you to join. ❤️

#MentalHealth #BipolarDepression #Depression #Anxiety #CushingsSyndrome #OpticNeuritis #MultipleSclerosis #Steroids #Sarcoidosis

NAMIWalks Mercer County

I'm supporting NAMI!
4 reactions 1 comment
Post

Checked one thing out of 4 on my to do list.

I make a to do list every night before I go to bed yo see what I can accomplish the next day. Today I was able to get out of bed and meal prep for the rest of the week. I am proud because I started it and then went to lay down because of pain. But I got back up and finished it later. Small steps. :)
#ChronicPain #Depression #ChronicIllness #OpticNeuritis #CushingsSyndrome

24 reactions 1 comment
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Predisone Side Effects

Earlier in Febuary I got the flu. As I was recovering I started to slowly lose my vision. I was taken to the hospital where we found out I have optic neuritis. Which than later turned into bilateral optic neuritis spreading to both eyes. I was in so much pain and they put me on IV steroids for about 7 days. I then got to go home and take them orally. I started with 80 mg for two weeks and am tapering down to 0. Currently on 30mg. The side effects are making me very depressed. I've gained so much weight in my mid section, neck, and face. I have to have a low sugar and low carb diet to prevent ny blood sugar from spiking. My hair is falling out in clumps. My back hurts, I'm shaky, I'm CONSTANTLY sweating, insomnia, acne on my shoulders, water retention.... you name it.
And still.... we don't know what caused my body to develop optic neuritis. They are doing so many tests for autoimmune. L.. but I just eant answers because I want to see clearly again and not have so much pain.
This is my MOON FACE. I am so scared that it may never go back to normal. I feel so self conscious because when I see people i know they obviously notice how much weight I've gained. #OpticNeuritis #MoonFace #Steroids #MentalHealth #AutoimmuneDisorder #MultipleSclerosis #ChronicIllness

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I did a thing! Terrified!

I did something today so major, so big that I'm still spinning from it.
I quit my job today, yes I quit my job!
I was diagnosed with RRMS last May, I've been In crappy shape even before the diagnosis. But even after the diagnosis and feeling the worst I've ever felt health wise, I kept on working, with just 1 week off from my first hospital stay from my diagnosis, with optic neuritis, partial blindness, severe pain and dead smack in the middle of my first major flare up, my ass went back to work after 1 week. I went back to my 10 hour a day, no breaks, crazy stressful pharmacy job. I lasted 5 more months before I just couldn't do it anymore.
So I went straight from there to a bank teller job, which where it wasn't physically straining, it was every bit of stressful and mentally exhausting.
I've lasted there 6 months, until I just cried my eyes out this evening to my husband. I told him I'm tired of giving my energy and what little I have in me daily to places that could care less about me or my health, instead of giving it to my kids and him. The ones who deserve to have me at my best for as long as they can. He has been pushing me to start trying to get my SSDI. So he looked at me and said I love you, and I want you to be ok for as long as your body allows. I want you to put you first for once and not worry about money or worry about giving up on working. He told me to give all my worries to him to figure out, that I've fought long and hard enough and to for once think of myself.
So I did just that. I texted my boss and told her I was no longer coming back, dropped my keys in the night deposit box, and felt a load of weight off my shoulders dissappear. Am I scared? Yes! Am I uncertain? Yes! Do I know what I'm getting myself in to? No! But I believe God has me in his hands and will see us through, because he knows too that I need to rest and my kiddos need a mom who can be all in , instead of sick all the time. And my husband needs his wife back. I can't keep pouring from a empty cup. Please pray for me to step off of this unknown and to do it as bravely as I can. Also, anyone who has applied or have gotten their SSDI off of their work points, how difficult was it? How long did it take? I'm going to be getting a lawyer to help me. I live in Kentucky.
#MultipleSclerosis

5 reactions 3 comments
Post

I’m new here!

Hi, my name is Kshirja Singh (shree). I'm looking for the humor while iam dealing NMOSD and Optic Neuritis. Iam partially blind but I see twice the funny side of my illness. Specially people's reactions.. priceless..

#MightyTogether

(edited)
4 reactions 1 comment
Post

Twas a Night With My MS

‘Twas a night with my M.S. as I limped through the house.

I lose my balance a lot so I walked near the couch.

The droop of my chest and my belly below,

Said I was further from young and closer to old.

The stockings were pinned to the mantel with care,

But one stocking was missing. I don’t know where.

“Don’t forget the cookies!” came a voice in my head.

They need to be covered before going to bed.

As I walked through the kitchen I heard several snaps,

The usual sound from my angry knee caps.

Then I tripped on my foot and dropped the cookie platter.

It bounced on the floor with loud metallic clatter.

Well I guess I was going just a little too fast.

In the morning I’ll just have to make a new batch.

I sat on my walker to assess my stubbed toe,

And looked at the cookies and crumbles below.

When what to my wondering eyes should appear,

But the missing stocking behind a decorative reindeer.

I wish I were a little more steady and quick.

Then my arm muscle spasmed and the stocking got flicked!

But where did it go? Ah now I see.

I had aimed at the mantel but it landed at my feet.

I laughed when I saw it in spite of myself,

Then laid it next to my Elf on the Shelf.

I thought of the dinner I had already planned.

Sweet taters, salad, and a nice honey ham.

The family would be here tomorrow at three.

I clenched my kegals because I needed to pee!

I picked up speed as I dashed down the hall,

Saying ‘Don’t you dare pee! Don’t you dare fall!’

I made it in time- a miracle at that!

I looked in the mirror and gave my shoulder a Pat.

My health is very important to me so I checked my medicinal inventory:

If I ran out of meds it would be quite a shame,

So I reviewed what I had and I muttered their names.

I had Avonex, Baclofen, and vitamin D,

I had several anti inflammatories.

Aspirin, Dalfampridine, Aleve, and Naproxin,

Restless leg cream and Levothyroxine.

I had melatonin, magnesium too,

Even a laxative to help me go poo.

Then I brushed my teeth with one hand on the wall,

And continued my journey to the end of the hall.

I put on my pj’s and climbed into bed,

Then adjusted the pillow under my head,

And the one at my back and between my knees.

I had tried to relax, but again need to pee.

I forgot the twinkling lights on my roof!

I need to save money, so got up with an “Oof”

I flipped off the lights and looked up at the sky.

I have optic neuritis in my left eye.

Then I heard the scratching of one little paw.

My dog was after a cookie crumb she saw.

All that I needed was a sick little dog.

I picked up the crumb then had a nip of egg nog.

With so many goodies I was looking quite thick,

But not too bad for a disabled chick.

Everyone gets some joy and some strife.

I still felt quite lucky to have this life.

The lights and the nog had me feeling much merrier.

I gave a big kiss to my Jack Russel Terrier.

With people and pets to love, how lucky am I!

Happy Holidays to all and to all a good night!

11 reactions 1 comment
Post

‘Twas a Night With My M.S. (a poem)

‘Twas a Night With My M.S.

‘Twas a night with my MS as I limped through the house,

I lose my balance a lot so I walked near the couch.

The droop of my chest and my belly below,

Said I was further from young and closer to old.

Two stockings were pinned to the mantel with care.

The third was missing. I don’t know where.

“Don’t forget the cookies!” came a voice in my head,

They need to be covered before going to bed.

As I walked to the kitchen I heard several snaps,

The usual sound from my angry knee caps.

Then I tripped on my foot and dropped the cookie platter.

It bounced on the floor with loud metallic clatter.

Well, I guess I was going just a little too fast.

In the morning I’ll just have to make a new batch.

I sat on my walker to assess my stubbed toe,

Then picked up the cookies and crumbles below.

When what to my wondering eyes should appear?

But the missing stocking behind a decorative reindeer!

I wished I were a little more steady and quick,

Then my arm muscle spasmed – the stocking got flicked!

But where did it go? Ah now I see.

I had aimed toward the mantel but it laid at my feet.

I laughed when I saw it in spite of myself.

Then laid it next to my Elf on the Shelf.

I thought of the dinner I had already planned,

Sweet taters, salad, a nice honey ham.

The family will be here tomorrow at 3:00.

I clenched my kegals ‘cause I needed to pee.

I picked up my speed as I dashed down the hall.

Saying “Don’t you dare pee! Don’t you dare fall!”

I made it in time! A miracle at that!

I smiled in the mirror and gave my shoulder a pat.

My health is very important to me.

So I checked my medicinal inventory:

If I ran out of meds it would be quite a shame.

I reviewed what I had and I muttered their names.

I had Avonex, Baclofen, and Vitamin D,

I had several anti-inflammatories.

Aspirin, Dalfampridine, Aleve, and Naproxen

Restless leg cream and Levothyroxine.

I had melatonin, magnesium, iron too,

Even a laxative to help me go poo.

Then I brushed my teeth with one hand on the wall.

Then continued my journey to the end of the hall.

I put on my pjs and climbed into bed,

Then adjusted the pillow under my head,

And the one at my back and between my knees,

I tried to relax, but again need to pee.

I forgot to turn off the twinkling lights on my roof.

I need to save money, so got up with an “Ooof”

I flipped off the lights and squinted up at the sky.

I had optic neuritis in my left eye.

But it’s much more cheery when the lights are on.

I said “Yes- I’m worth it!” flipped the switch back on.

Then I heard the scratching of one little paw.

My dog was after a Cookie crumb she saw.

All that I needed was a sick little dog.

I picked up the crumb then poured a nip of egg nog.

With so many goodies I’m looking quite thick,

But not too bad for disabled chick.

Everyone gets some joy and some strife.

I still felt quite lucky to have this life.

The lights and the nog had me feeling much merrier.

I gave a big kiss to my jack russel terrier.

And with people to love how lucky am I!

Happy holidays to all and to all a good night!

4 reactions 3 comments
Post

I’m new here!

Hi, my name is Christine. I'm here because I have been diagnosed with #OpticNeuritis and #relapsingremitingmultiplesclerosis.
A family member directed me to look up MS Societies in my local area and fell upon #nationalmssociety where I found #MightyTogether .

4 reactions 4 comments