I just wanted to let everyone know that I was contacted by the doctor’s office in Gainesville, FL right before Christmas. Originally, I thought March would be the first appointment I could get (scheduling for the doctor was limited). However, I will not be seeing the doctor, I will be seeing her assistant and getting the tests done for evaluation. My appointment is for January 10th and I am nervous, but glad it’s coming earlier than March–forward motion.
￼￼￼￼ If you or a loved one have/are being diagnosed with an eye disease, you know what I mean about the nervousness but being glad at the same time. It’s weird, I know. I really want the answers, but I’m also a little apprehensive to know my prognosis. When we thought it was Stargardt’s disease, for the last 23 years, I knew I wouldn’t go completely blind (that’s what I was told anyway). Now, from what I understand, even if I find out which Cone-Rod Dystrophy type I have, we still might not know how much more vision I could lose, how quickly, and so on.
￼￼￼￼￼￼Here’s the thing, I’ve never had control over what my vision was going to do. Now, I just know I don’t have the control. The control I thought I had was never there and now knowing I am powerless has brought some things to my attention. ￼
1 No one else has control over their vision either:
I’m sorry to tell you,but anyone can experience vision loss. Someone told me once that being disabled is only minority group you don’t necessarily have to be born into. Some people are born into this group and others acquire membership later on. Any sense of control is false. I was speaking with a friend about all of the new developments in my vision. I told her that I have very little power over anything in my life and one of the things I can control is what I eat (discussed more in point 2). She agreed and said that eating healthily never hurts. However, she also reminded me that I can control my thoughts. Now, she acknowledged that sometimes I cannot control all of the thoughts that might come into my mind, but I can stop them and contradict them with more positive thoughts (2 Cor 10:5).
2 Eating healthily is never a bad idea:
When I first heard that I might have been misdiagnosed, during my first check up after having two children, there was one word that stuck with me: attenuation. Attenuation, in this context, was explained to me as a constriction, particularly in the blood vessels of/around the eye. Constriction made me think of inflammation, so I decided to start eating according to the Auto-Immune Protocol diet (AIP). This diet is pretty restricted, but my thought is, even on the off chance it works to the point where I can see my children’s faces for one day longer, it’s worth it. Also, eating this way makes me feel like I am doing something, so mentally it’s great. I can also tell a difference in how I feel because I haven’t been doing well with it during the holidays and I can tell I need to get back on it. And in turn if I feel better, I will enjoy whatever time I have left with the vision I have. Any way I look at it, eating AIP is good for me. I looked up the AIP diet on Pintrest. Do the research and ask your doctor.
3 One day at a time:
My goals have changed somewhat. It used to be that I needed to get so much done in the day to feel productive. Now, I try to get one thing done a day. This started because I was completely overwhelmed by the project of finding my own doctor (after my doctor refused to give me a referral). I start with looking up the research studies. I did that in one day (honestly, there were only three and I didn’t qualify for any of them; this was on the only website my doctor had given me after terminating our relationship). Then, I told a friend, and that was THE ONLY thing I could do that day as it was completely emotionally exhausting. Then I went to Instragram. I received so many leads, but I only pursued one a day. It’s all I could handle. And so on. It’s just the only way I can get anything done right now; one step at a time.
4 My relationships are precious:
I’ve typically been focused on relationships with family and a few friends. Even if I cannot be with them everyday, I think about them and pray for them daily. Now, I am extremely aware of focusing on my marriage and children. I am figuring out ways to spend more quality time with them and making sure they know I love them SO MUCH. With my family (parents and brother) I feel like this change has brought us closer together as we are very reminded of the diagnosis from my childhood. However, with my in-laws, it’s hard for me. I don’t know why. I only have a few guesses: Maybe I’m afraid that they will pity me?, Maybe it’s the underlying depression that is coming to the surface in different ways and I find being in larger groups too overwhelming?, Maybe it’s my own insecurities?, or maybe, it’s all of the above and other things I can’t pinpoint at the moment. Whatever it is, I know my personal thoughts, feelings and actions have changed and I’m still sorting everything out. Unfortunately, this is true of my friends to some extent as well. Although, when I spend time or reach out to my in-laws or friends I feel so much better and remember that what I’m going through is hard and I’m still working out I am doing with this.
5 My faith is deepening:
After the initial few days, and some occasional setbacks, I am experiencing a peace that only could come from God. I am content, even though most people would describe my circumstances as bleak, upsetting and overwhelming. Now, I’m not saying I am always experiencing peace, but the majority of the time I am. Also, when the unpleasant feelings and thoughts start coming in, I remember that God is in control and there is nothing more I can do, than what I am already doing. I only have part of the picture and I am allowing God to show me what I need to know when He decides to. It’s been so freeing.
So…this is how I’ve been preparing my self mentally and physically, emotionally and spiritually, relationally and nutritionally.