We're getting picked up at 115pm so I'm gonna shower at noon. We don't know how long the appointment will be so I've got will call for transportation. This should be relatively easy unless my double vision makes it hard. Fingers crossed. Wish me luck.
My feet are huge. 2 days ago I emailed my doctor but I haven't heard back. I'm gonna schedule an appointment to discuss my lymphedema. She said if it got worse we could talk about it and yeah it got worse. I gave the new meds 3 weeks. And I can't find anywhere to get compression socks with my insurance. I'm so stressed out.
And the pharmacy my doctor sent the script for dexcom to doesn't accept my insurance either. So I gotta find a different one that will deliver.
My caseworker from yesterday found the info page for the surgeon my neuro-ophthalmologist referred me to. The page had a link to request an appointment so I filled it out. I'm hoping to hear back.
I am so anxious about eye surgery. I've had a lot of surgeries over the last 9 years and I've done really well with handling it. I even had major back surgery 2 and a half years ago. But for some reason eye surgery scares me the most.
Just thinking about it is making me cry. So I'm just gonna lay here and drink my coffee and cry for a bit.
19 reactions •
13 comments
What amblyopia looks like. Like a lazy eye but unlike a lazy eye It only goes “lazy” when tired or by my own will. Some people with amblyopia might have more significant misalignment. Amblyopia is a condition where a child’s eye begins to favor one over the other for one reason or another (often starting in infancy) causing a difference in vision between the two eyes significant enough to result in eye misalignment due to the brain turning the eye off to prevent double vision. People with amblyopia have poor depth perception (which requires two eyes working in harmony) and can’t view 3D very well. Other vision ailments may be involved as a possible reason for the brains favoritism such as cancer of the eye. Often times the cause of the favoritism isn’t known. Most folks with amblyopia are farsighted not nearsighted. Including myself. But I hate my glasses. :P
It’s important with new born babies to understand they are generally all farsighted. They say babies only see bouts at birth. “Yep that’s my mommy! That big blobby thing over there!” Lol and that doesn’t mean they have any vision problems. They’ll likely outgrow it.
#Amblyopia #Strabismus #CPTSD #BorderlinePersonalityDisorder #EhlersDanlosSyndrome #PolycysticOvarySyndrome
P.s. yes I’m safe with my guns! XD when you live your life with vision deficits you’re brain finds a way. When shooting everyone uses their best eye to aim. That would be my eye staring right at you. My left eye. Also my farsightedness has yet to disable me from things. If anything it makes me a better shot since I don’t stand right in front of my target lol.
The little ones keep me going...
I worry about their futures...both my youngest seem to be hypermobile. This sweet boy was and still is quite a “floppy” baby , and had to see a neurologist when he was about 2 months old bc he wasn’t lifting his head properly.
When I pick him up, his little spine cracks in multiple places, and he likes to wrap his middle finger around his pointer finger in a weird contortion. It’s like even at 20 months old his body knows it can do weird things lol.
He has strabismus in both eyes and I’m wondering if that could be EDS related.
I have an appointment with a geneticist in January, I pray that he’ll be able to see the kids as well.
#EhlersDanlosSyndrome
#peditrics #hypermobile #floppybabies #Strabismus
Latest
