AlaskanAmazon
Registered User
(3/11/07 1:41 pm)
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40 years of Uveitis and going strong
Hi~
My name is Chris and I live in the beautiful Matanuska Susitna Valley where we grow the giant veggies and have spectacular scenes every day! I am about 50 miles north of Anchorage in a town called Wasilla, 'all I saw' backwards...pioneer humor.
My journey with uveitis started at age 12. I woke up one morning with both eyes red hot, painful and unable to tolerate any light. Mom, being a nurse, did not mess with an ER or our regular doctor but took me straight to an eye doc. Iritis was diagnosied at the time and steroid drops prescribed.
It has been 42 year that I have lived with this, so many details are fuzzy, but I will give you some highlight recaps.
At 16, I was homeschooled because the steroids had caused cateracts. At that time, cateract surgery was done only on ripe cateracts, and so I underwent a series of lancings of my lenses in order to ripen them and then have them removed. This entailed at least two days in the hospital, so school was out of the question. So that year I stayed home with a visiting teacher and taught myself guitar. I helped several elderly persons that year. Nurses would come get me and have me talk to some of the more frightened ones that were about to have surgery. God used me powerfully for these folks.
Life rocked along and I did go to college, did missionary work, married, got a second bachelors, taught handicapped kids, learned to weave and did anything/everything I wanted. My parents never allowed my eyes to be a 'handicap'. I was lucky that way. By time I wanted to have my own children, I was concerned about passing on this disease to my children. I was reassured by my doctor that this disease was not hereditary, I would not have it forever and I would not go blind. Reassured, my DH and I started to try to have kids. As it turned out, they were a long time coming.
Treatment for my eyes during all these years has been subcutaneous eye injections. They were the most effective way to threat my eyes and have the least amount of steroid side effects on the rest of my body. Some years I needed those shots every three months...some years, six months apart...some time, during my pregnancies, i went as long as a year.
Fast forward to now. Current treatment is the same as it was when I was 12 (and I become a little girl each time I have the damn things done)...steroid injections subcutaneously. After 40 years however, I have some pretty TOUGH eye balls. Lots of scar tissue and injections are tricky due to they cannot numb me up any more. There is one more spot not scarred left and my docs and I are looking down the road at the long term steroid capsule.
My current status is that I have lost 50% vision in my right eye due to disease related macular degeneration. MD in my left eye has been arrested with cold laser, but not without vision loss. My good days are 20/60...I no longer drive.My biggest adjustment ha been to being homebound. My DH works remote (North Slope Oil fields) and my sons are 19 and 16 now. I am a 'KEPT' woman with two drivers at my beckon call.
Because of the permanent damage to my eyes, and no public transportation, I have sought help from Div. of Voc. Rehab to help me start a home-based business. I hope to have my website up and running by the end of this month. Life is So full and exciting for me, even with my visual limitations. I thank God for His Almighty guidance for that!
I am in a very good place mentally. It is not without A LOT of hard work with counselors, my church and my own determination to not let this disease define who I am. I am so much MORE than my eyes. I hope I pass this on to my second son, who has the disease as well. The doctor was wrong...it is hereditary in my case. Thankfully, only one son has it!
Thank you for patiently reading through all this! It has been a long journey but one that I am stronger for as a result of not letting it define me or my abilities to be fully alive.
Chris
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