Hi Joy,
I have still not gone into Remission but I am figuring out how to deal with having a chronic illness. I have had my mourning/grieving process and even though I feel sad some days I am ready to try and live my life to the fullest. I have a lot to be grateful for and I try to focus more of my attention on that. Once I noticed my mind set change around how I feel about my chronic illness I have noticed a black cloud slowly lift. I also started taking anti depressants that I thought I really didn't need but now that I have been taking them for about 6 months now I realize it was extremely helpful. It just numbs the pain of what we have to deal with. It doesn't change it but it dulls it. Otherwise I am still working full time managing my 3 kids. Trying to loose the weight from the steroids I have hit 26 pound loss now still have 22 to go. I am just taking every day one day at a time. I postponed my wedding because of it and I think I am going to think about getting that back on track so I have something to look forward to. There is not a day where this doesn't effect my life but I am hoping in another year I have some days where I don't think about it. I think that is my next goal.
How are you doing?
Thanks for replying me shauna!
I don't have a family who can help me , I'm helping my self alone. The disease make my one part of my eye red but my eye don't pain me some sometimes I don't feel comfortable and sometimes my friends thinks that I'm crying, when I'm sitting alone they ask me what are you cry and I tell them I'm not crying but they don't understand, it's not easy to leave with this disease, I was a happy guy but now my life changes. this time I hope I get a good eye drops that can help me from this stress. Sometimes I'm confused sometimes people say there's cure sometimes they said there is not. How about you did your eye drops helps you to reduce the redness
Hi Sankary,
First off I am so sorry you are trying to deal with all of this with out a support system. I know we are strangers but I really am here for you. I had to try over 10 eye drops till I found some that actually started helping.
May I ask what country you live in? I want to do some research about what options you have.
Because you do not have family or friends that seem to understand what you are going threw I think it would be extremely helpful for you to see a therapist until you get a manage on everything. Also Anti depressants.
Unfortunately there is no cure for what we have. But there is remission/management. Like I said you will have good days and bad days. Right now you are having a bad Flair. You will need to figure out with your team of doctors what you need to start doing.
If you would like you can private message me and I can give you my personal e mail address? This way I can send you more specific things you need to start saying and doing to advocate for yourself. You will need to do this. It is crucial you find doctors that you feel are supportive and taking you seriously. You should be getting eye checks every 2 weeks at this point. From and Ophthalmologist.
Questions?
Do you have an Ophthalmologist?
Do you have a Rheumatologist?
Do you have a primary care doctor?
If you don't please spend this next week setting up those doctor appointments for yourself.
You will need all 3 and preferably ones that will communicate with each other. If not that is also ok just make sure you keep them updated.
Hang in there and I know you cant imagine but in a year from now things will be better for you. It is a long journey so buckle up. I am here to help you in any way I can. I really can understand what it is like. My eye does the exact same thing.
Smiles
Shauna
Hello shauna !
How are you doing?
I'm from guinea Bissau but I'm staying in Germany right now in a refugee camp. Before I don't know this sickness but now it worried me a lot. What's the name of the eye drops that help you .
I use gmail this my address
And Facebook
And thank you shauna
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Oh what a beautiful response , bless 🤗 just like you I feel most days can be battle. Over the next couple of days I will get back to with my story , take much care