Defy The Odds

By lolomac

2 min read

I don't know life without RA, it's literally all I've ever known.
Diagnosed at the age of two my parents were told I would be wheel chair bound by ten years old, the doctors were wrong. At nearly forty years old I am still walking!
My Mom always said, "you can do whatever you set your mind to. Can't is not in your vocabulary"
Even at 8 years old, legally blind and barely able to get out of bed in the morning she STILL said, "you CAN do this!"

As the disease attacked joint after joint, and even my eyes, I was expected to hold my head high and walk on.
Oh, I did!! I was proud and brave.

It wasn't until I began using devices for the blind that I began to retreat. It was grace 7 and life was awkward enough without having giant enlarged text books, magnifying glasses, and a talking watch. To top it all off I had a special aide who followed me around. I was deemed, "blind gimp" by the same kids that had cheered me on in elementary.
I was devastated. What had changed so much in one summer???
My only way to cope was to defy my aide, to tell her I hated her. To lose my giant books and to break my magnifying glass. Get rid of the things that made me stand out.
My aide sat me down and said, "one day these things that you hate will be the things that give you strength. You will leave here and go on to great things. These people that laugh now will tell their children of the brave girl they went to school with"
That moment I began focusing on the future, I saw a grown and older me walking freely, moving with fluidity and seeing clearly. That became my dream.
Now 38 years after my diagnosis I inject myself, I take pills I administer eye drops AND I walk with much more ease than I ever did. I stand without grimacing, I am no longer legally blind and I HAVE wrists!
I am not in a chair.

I smile, I laugh, I love and I live.

I share my story, my triumphs and struggles with others in my YouTube vlog and yes, those same people that laughed now say, "I admire your courage"

I defied odds. You can too!

Check out my vlog:
https://youtu.be/sgLy5Uw1ltI

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not found
Hi Lori, So sorry for your difficulties throughout your life. But, you have fought long and hard and that is more than respectable. I wish I could hug every little kid that has a serious illness. My son has Type 1 Diabetes, so I know the impact (on everyone) that these diseases have on children. Not fair, to say the very least. It sounds like you might be managing your illness pretty well at this point? I notice you talk about your vision issues. I have experienced rapidly declining eyesight with my disease and am wondering if you could tell us more about your experience. What have you found effective in recovering your eyesight?
lomac77 Member
Hello! Thank you for your response! Yes, I am doing very well now. I was given the diagnosis of remission in December of 2016. This remission is a result of my medications, humira, Celebrex and methotrexate. I treat my eyes daily with prednisone eye drops. At the age of 9 I was diagnosed with arthritis in me yes. This is called, iritis. A side effects of the medication I was put on to treat the inflammation in my eyes was known to cause cataracts. By age 12 I had cataracts on both lenses and was dealing with chronic attacks of acute angle closure glaucoma. This condition results in the closure of a channel in the eyes that allows fluid to circulate. The closure of this channel caused my eye pressure to rise to extremely dangerous levels, resulting in loss of vision if left untreated. The pain was excruciating and the laser treatment used to blast the channel open was very scary and painful as well. I dealt with glaucoma a total of 7 times and during one attack I lost partial sight in my right eye that will never be regained. By grade seven age 13, I was legally blind. At age 14, surgery was done to remove the lenses in my eyes and permanently delete the chance of cataracts reoccurring and ending the never ending battle of glaucoma. To this day, at age 39 my eyes are void of lenses. I wear extremely thick glasses. But, thank goodness I can wear a combination of contact lenses and reading glasses. Omitting the public embarrassment of such thick glasses. I,still have bouts of inflammation in my eyes, approximately ten years ago I had an extremely bad flare in which the vision in my left eye was permanently affected. I have vision that is deemed as good enough to drive. However, I don't often take that chance. My peripheral vision is nil, I have difficulty with depth perception and certain colour combinations. The greatest thing is that my vision is well enough for me to see my beautiful nieces and nephew, I can see my wife and step kids. The positives are endless and far outweigh the negatives. I would suggest you see an optometrist and ask to be referred to a doctor who specializes in iritis. It is an area that few people know can be affected by the disease. Take care, and remember that life is beautiful. ❤️
not found
Correct. I think it's safe to assume that no part of our bodies are exempt from the inflammation that these diseases bring. I think our eyes suffer as the pathways that normally allow a free flow of nutrients to our eyes get inflamed and begin to cause our eyes to become less and less healthy as the disease progresses. I do believe that in that case, some vision can be returned to normal. But, as with any of the damage that RA/RD causes, there's always the chance that the damage is to extensive and we just have to do the best we can with what's remaining. I think you are doing just that, so kudos to you. After a little research I found that liquid MSM drops might be able to help the eyes heal, so I just started taking those this week. I'll make sure I report any positive changes, once I've had some time to see how they are working. Keep fighting the good fight and God Bless you for enduring the long struggle that the disease has laid upon you.