Optic Neuritis

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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!

10 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
Post

I'm new here!

Hi, my name is Bagofcatsemily80. I'm here because I am reaching my 3 year mark from the day I was hospitalized for acute blindness (optic neuritis). At the time the neurology staff, mainly newly posted med students were very focused on an MS diagnosis and ruling out another more debilitating form I think it was NM. In the end my vision was restored after 3 days on IV solumedrol. I was given no diagnosis and followed up with both neuro-opthamologist and neurologist.

the thing is, my blindness episode began to take root on the last week of a 3 week stay in a beach cottage that was infested with ticks. It was in Orient, NY which just so happens to be a short boat ride Lyme, CT. At the hospital my Lyme tests were negative. I still to this day believe it was a tick bite.

I do not believe this was my first encounter with tick bites either. As a young girl, I spent 12 endless summers running through the woods of an area of Pennsylvania known for its dense deer and tick population.

I get migraines nearly every afternoon on both sides of the bridge of my nose, I have to lock myself in a cold dark room because it’s not the just the light but unbearable sound of my lovely family’s voices that can make me mean. I use a Neil sinus rinse bottle because it feels like there are rocks in my sinuses, after I use the Flonase. I have sinusitis but I keep erupting into hot burning hives from antibiotics that previously were fine to take. On these migraine days my anxiety sky rockets, my knees burn up and ache and stomach gurgles and cramps. A little while later, I have an intense need to vomit or otherwise. After this last event, I usually feel light, almost giddy as I drift off in a very sweaty deep sleep.

am I just being bullheaded about my Lyme’s speculation?

#MightyTogether #Migraine
#OpticNeuritis

2 reactions 2 comments
Post

I'm new here!

Hi, my name is donnyrecovery. I'm here because
I have optic neuritis and lesions on my brain but I'm currently undiagnosed and in limbo and very scared#MightyTogether #MultipleSclerosis

6 reactions 4 comments
Post

I’m new here!

Hi, my name is MummyTut82. I've been diagnosed with so many illnesses diseases that at age 40 and Mum of 3 darling children, I have lost all quality of life and I'm scared of myself honestly.. For I can't keep just 'existing' like this and I know it is destroying my children's hearts watching me so sick ... it breaks me more every minute coz I honestly believe they shouldn't have to see Mummy this way anymore it isn't fair on them... #icantdothis😮‍💨 #heartbroken💔 #idontwanttoleavemybabies😪 #itisjustfartoomuchtohandle💔

#MightyTogether #PTSD #Fibromyalgia #Anxiety #Depression #ADHD #OCD #Grief #Leukemia #FunctionalMovementDisorder #DiabetesType2 #Cancer #RheumatoidArthritis #OpticNeuritis #NeurocardiogenicSyncope #DemyelinatingNeuropathies #CeliacDisease #InappropriateSinusTachycardia #congenitalheartdefect/Disease #BirthDefect #IronDeficiencyAnemia #Arthritis #ArteriovenousMalformation #SuicidalThoughts #chronicactiveepstein-BarrVirus #ChronicIllness #polycysticovarysyndrome(PCOS) #Hyperparathyroidism #ThyroidCancer #Cardiomyopathy #CardiovascularDisease #CongenitalVascularCavernousMalformations

9 reactions 3 comments
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State of Unbelief… #FND ? #nowayihavethat !

Hi! 😃💜💜
I’m new to the group!

Hope all of you are having a good day today! 😊💟

As the title states… I did NOT believe it when I received the #FNDdiagnosis !

I’m still having trouble grasping my neuros assessment of all my conditions & symptoms!….

Since I’ve been dealing with ALL my NEURO health issues since 2013 & she just met me last year!

— Can’t stand narrow minded tunnel vision non proactive & non helpful doctors! — #timetochangeneuros
#sotiredofthiscrap

Anybody else try to “forget” all their diagnosis ON THE DAILY??!!
— because it’s just too overwhelming & creates anxiety?

Anyway…
I try most days to push myself beyond the EXTREME pain & numerous symptoms & focus on ANYTHING ELSE to take my mind off my daily struggles & I’m sure you ALL do some of the same things!

— That’s it! lol 😜😎🥰

I hope each of you find JOY in your lives DAILY!😁😘

#timetorest
#HEDS #POTS #IIH #RheumatoidArthritis #DevicsDisease #wheelchairbound4x #OpticNeuritis #DoubleVision
#triplevision
#PCOS
#temporalpallorandscotomas
#GERD
#gastreoparesisSUCKS !! #PituitaryTumor #Diabetes #HBP #Asthma #COPD
#Anxiety #Depression #NeurogenicBladder #chronicUTIS #KidneyStones #toomanypillstotake !
#toomanydiagnosis !
#FOCUSONLIVINGLIFE !

GOD BLESS AND HELP US ALL!!💜❤️💗😇

1 reaction 3 comments
Post

Advice for dating when newly diagnosed?

I was just diagnosed last month after a hospital stay for optic neuritis and have been out of work for 2 months while I recovered and started treatment (Ocrevus, second half dose next week). I've also been trying to date but just don't know how to do it right now. I feel like my MS is the only thing I have to talk about because it's the only thing I have going on and I still feel so crappy most days. It's also in the back of my head that I don't have much of a support system here and I need help and am going to need even more help in the future. I'm mobile right now but have had bouts of total lower body numbness that makes me concerned. I don't want someone I just started dating to immediately feel the pressure I guess.. or be with someone who feels like they are doing charity work being with me.

Would love any inspiring stories of meeting your person after diagnosis and any perspectives on the matter.

8 comments