When I was 1st diagnosed with ocular sarcoidosis my symptoms closely mimicked Pink Eye… with the exception of the pressure in my eye was like 54! -within a week totally loosing my sight in my right eye for a month led to the diagnosis of sarcoidosis #Uveitis caused by Sarcoidosis from a medical eye doctor an Ophthalmologist!
So, ocular sarcoidosis can or will lead to vision lost even with taking inflammatory/auto-immune suppressants medications for sarcoidosis.
So my medication for sarcoidosis is to avoid flares in my eye to slow down vision loss because of sarcoidosis!
If I had not gotten treatment in my right eye my vision loss would have been permanent!
I have needed and had prednisone needles -injected straight into my eye 👁️ ball with some sort of ocular contraption- keeping my eye open so I couldn’t blink or move my eye….
If I took prednisone pills I would have loss my vision totally, so time was an issue…. To avoid permanent vision loss due to high pressure in my eye while having a sarcoidosis flare when I lived in Florida, -Also, some of my worst flares were in Florida which also -included Sarcoidosis of my skin! I am from Connecticut-Which is the reason I Retired in Connecticut!
My medication is to hopefully!!! slow down vision loss an total vision loss because of ocular sarcoidosis.
The scary part now is there can be more vision loss without all the alarming 1st symptoms of when I 1st got diagnosed!
When I’m about to have a flare my eyeball starts to hurt etc., for lack of a better word… I also, notice flares or after stress or anxiety also, and when I miss or skip taking my home injections of methotrexate etc., so my eye hurting reminds me not to skip my methotrexate or else it would turn into a full sarcoidosis flare… with each full flare in my eye a little bit of more vision loss an a new prescription for eye glasses!
I’m long winded talking about my experience with living with sarcoidosis an take vision lost an even the thought of additional vision loss seriously!
Sarcoidosis is systemic I do also have the marker of sarcoidosis nodules on my lung 🫁 and did not get the nodules for at least 10 years after getting sarcoidosis, that introduced it self 1st in my eye and skin., Blah blah blah 💭
My Anxieties, worries are heightened by comorbidities, etc., also- Based on My MRI and my Neuro Surgeon with at some point needing cervical aka., neck Surgery I’m gonna wait until I start dropping everything - The problem in my neck would cause this and walking issues -which is the part of my neck that needs surgery; because I’m afraid I cancelled my scheduled Neck surgery an if I wait until its really bad there’s a 97% chance the surgery of my neck would reverse the issues in my neck that would cause me to drop stuff etc., So, I deal with the Neck pain which has Spiked -increased in my shoulders and forearms!
Also, I need spinal aka., back surgery! An let me not forget my- Joint Pain- Muscle, Stiffness as well as Chronic Fatigue!
Omg, I’ve had pancreatitis pain an a spot on my liver (and I don’t drink and I don’t believe it’s a possible Fatty liver - but, potentially sarcoidosis) …
I have concerns of sarcoidosis in these to organs based on my MRI’s showing a spot inflamed of sorts on my liver an pancreas🙃which needs further investigation!
Oh, and ….
Lastly,Let’s not talk about Breast Cancer an the Lumpectomy I had a year and a half ago; an the Breast Cancer pill I gotta take for the next 5 years an this pill alone causes me severe Joint and Muscle Pain; But, I have to take it! Now, mind you this joint, muscle pain on top of Sarcoidosis causes Joint pain as well as I have #osteoarthritis #Pain
So, it’s an absolute pet peeve when someone, friends etc,. Wants to tell me how I feel—
Ignorance, Unawareness - About-Sarcoidosis is irritating for people that have sarcoidosis!
#Sarcoidosis Awareness is 🔑
In The Absence Of Understanding -About-Sarcoidosis!
🩵xoxo🩵 -Lisa
#mantra
When know one you know has Sarcoidosis💭
In my bed as I share this post with you…
- My post are not for me, but you!
If after me comes you- Cliché…
#Sarcoidosis, is #Exhausting
It is my plan to close my #Blog about-sarcoidosis.com when I have reached 50,000 visitors to my #Blog
Sharing information About-Sarcoidosis as I walked alone for 10+ years with sarcoidosis💭