Glaucoma

If 1000 people with your same condition where in the same room as you , I bet you would be the only one with your perspective on life “

The man at our churches end of summer party responded to me in what felt like a half disgusted , and in another way half impressed form of bewilderment .

He is the type you can tell life had not handed a kind hand to .. and in process he has hardened with the pains he has had to endure
( kind of how the same water that softens a potatoe hardens an egg )

I smiled and said to him

“ Not exactly, I’ve had the opportunity to work along side and get to know many with conditions like mine ,
Or worse .. and the perspective on life with severe illness .. it’s kind of a mixed bag “

And he could just not wrap around his head around how im so happy .. but a 28 year old , with failing health .

I tried to explain how even though im lacking in the physical health department .. I I feel like I can have joy because God has blessed in so many ways .

With a chuckle and a smile he told me he was Jewish 😂❤️.

He could not wrap his head around how I see the world .

And I could not wrap my head around how he sees the world .

Maybe God knew I needed this conversation when it seemed like all I was doing today was marinating in the frustrations of my current situation .

I even came out to our Church cook out knowing I didn’t physically feel good enough to be there , and cursing out the constant drizzle of rain .

But as it rained , 2 rainbows formed

And through my conversation with this man . The rainbows just seemed to get brighter .

As I left the party , feeling a new perspective on how to face my current dilemmas .

I couldn’t help but say a silent prayer to God thanking him for the rain in my life .

So I know just how important rainbows are . 🌈

How has your health changed your perspective in a way others may not understand? #RareDisease #CommonVariableImmuneDeficiency #MastCellActivationDisorder #Epilepsy #LungDisease #MentalHealth #MixedConnectiveTissueDiseaseMCTD #Glaucoma #Gastroparesis #chronicmigraine

But my glaucoma specialist wants me to wait until after I see the neuro opthalmologist. I got my prescription written down and I've been checking out frames online. My insurance doesn't cover the frames at my opthalmologist office so I gotta look elsewhere. I was gonna order a pair online but my mom said if I can get my insurance to cover a pair I should do that instead. I'll see about what I do next month.

The company that was scheduled to pick me up for my appointment cancelled my ride so I had to call the main hub for my transportation to order a Lyft. That was annoying but manageable. What wasn't manageable was my doctor not doing his job. He decided to tell me to see a different doctor that I have seen in the past. He was concerned about my eye pressure being just a little high. So I have to go see the glaucoma specialist in January. I don't have glaucoma. I might have astigmatism and I have atrophy in both of my optic nerves.

I was supposed to call my insurance for a ride home so I did. And I couldn't reach a human being. I was on hold for over 15 minutes. I ended up just ordering my own Lyft out of my own pocket. I was so angry and frustrated with the transportation company. I still am but I had therapy today at 3pm.

I had a panic attack when I got home. It was the same as the last few times. I took a shower and I felt a little bit better. I'm trying to figure out what is triggering my panic attacks but so far I don't know.

We talked about my feelings about my experience. We also talked about the panic attack. He made a suggestion for eating at the kitchen table from now on. I've been eating and smoking on my couch and bed. I'm gonna try to be more mindful of what I do. I gotta get the panic attacks under control.

He asked me why I haven't been using the table and I said I haven't had a table for over 8 years and I don't know how to start using it now. We talked about how to do it and it seems like it would be easier to do than I thought. But time will tell.

#CheckInWithMe

Did you know keeping up with your eye exams can help prevent blindness? When detected early, diseases such as glaucoma and macular degeneration can be treated and the progression can be slowed down or even stopped before irreversible blindness occurs. #Blindness #Glaucoma #Disability #MightyTogether