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Diabetes & Vision Challenges: “What I wish a Diabetes Educator would have told me if I had one….” Guest Blog

By Lisa Golden posted 12-22-2020 19:09

  

I am that kind of gal who refuses to accept vulnerabilities.  It took me a while to accept my Diabetes diagnosis and it took me even longer to accept the challenges that came with it.  I was first diagnosed with Diabetes in November 2003 at age 20.  At this point, I had no idea of what it meant to live with Diabetes.  After a little over a decade of ups and downs with the challenges that I’ve experienced, I began to have problems with my vision.  It all started with seeing floaters (small specks of blood) in my right eye.  At first, I did not think anything was wrong until it was accompanied by severe blurriness.  Then, I had another problem….no health insurance.  During this time, I only had a part-time job and being a single mother to a child with special needs, my time was far spent.  After multiple attempts to apply for insurance, I was finally approved for Medicaid and able to seek medical attention to catch up for what I didn’t do in my diabetes management before.

In 2017, I was diagnosed with Diabetic Retinopathy in both eyes.  My right eye had gone through 7 laser surgeries and a retina reattachment surgery.  On February 3, 2018, I woke up with no vision in my right eye because 3 days after the retina reattachment surgery, my retina had become completely detached.  I was devastated, but could not stop the work that I started in 2016 when I founded CORE Initiative.  The purpose was to be a conduit for health education and it has led me on a path to diabetes peer education & support.

After beginning my work with Cities Changing Diabetes-Houston through the Faith & Diabetes Initiative and then managing the Houston Diabetes Peer Support Program, it empowered me to get more involved in helping others with their diabetes management while I dealt with “new” vision problems in my left eye. 

During an in-person peer support meeting in May of 2019, I was talking to the group about diabetes medications.  The vision in my left eye changed from object definition to only visible light with literally one blink.  I remember being concerned about how I was going to make it through the meeting without anyone being able to notice that I could not see.  Afterwards, I sought clinical opinions from ophthalmologists and was told that the retina in the left eye also began to detach and that I should prepare myself for a life with blindness.  I felt terrified & emotional at the thought of having a life of blindness and was burdened with feelings of fear, anxiety, depression, anger, sadness, helplessness and worthlessness.  Everything was difficult to do without assistance, so my younger brother insisted that he follow me around because there was no way that I was going to stop sharing diabetes education, especially now.

I never had a diabetes educator and knew nothing about one until I completed training to be a diabetes peer educator in 2018.  Now known as Certified Diabetes Care & Education Specialists (CDCES), they are the unsung heroes of Diabetes care for people living with Diabetes.  For this reason, I wish that I knew about them before my health journey took so many devastating twists and turns.  It would be difficult for me to tell you what a CDCES should have told me about my diabetes management while blind because I did not have one.  After working with these professionals, I am convinced that they can play a very integral role in a patient’s diabetes care team.

There are a few things that would help a CDCES to reach and gain the trust of people living with Diabetes, specifically those with vision challenges:

  • Allow the patient to feel hurt and to vent to you about losing their vision at ANY level/capacity (if they are willing to do so).
  • If you can get someone to be open & honest with you, then tackling the behavior changes (diet, physical activity, taking medications, etc.) will be easier.
  • Emphasize to the patient that losing some or all of their eyesight does not mean that their diabetes management ends. To stop the progression of Diabetic Retinopathy, blood glucose regulation is important.
  • Let the patient know that it is ok to ask for help by showing that you are willing to help them.

I experienced 9 months of blindness in both eyes and not being able to see well enough to move around and complete most tasks without assistance.  After streamlining my diabetes management by being consistent in my self-care, I began to see some improvement in my left eye.  I am still blind in my right eye, but I can now see well enough in the left eye to carefully move and walk without assistance.  I have made some adjustments to my devices so that I could function enough to read (screen colors, text color & text size).  Do I have challenges with my vision?  Yes! I still need assistance with some things, but my vision in my left eye is better than it was.

To those of you who are dealing with Diabetes and having vision challenges, I would like to encourage you by saying that inside of you is the desire to improve the quality of your lives.  Allow that desire to overtake you and LIVE!

Ms. Serena Valentine is the Executive Director of CORE Initiative.  CORE Initiative is a nonprofit organization in Houston, TX and an advocate for the education, prevention, and treatment of health care issues in the lives of people. One of the most important initiatives within the organization is to share insight about health issues that affect communities, locally, nationally , and globally through health education classes and support groups.

 

Ms. Valentine has a Bachelor of Science in Health Care Administration and a Master of Business Administration degree in Health Care Management.  Both degrees were obtained from Columbia Southern University.  She was trained under the Faith and Diabetes Initiative and is now the Houston Diabetes Peer Support Program Coordinator & DSME Master Trainer for the Faith & Diabetes Initiative under Cities Changing Diabetes Houston.  Also a Cities Changing Diabetes-Houston Core Team member, Ms. Valentine’s passion to educate & support our communities concerning Diabetes stems from her own 17 year long experience as a person dealing with Type 2 Diabetes. She is living proof that Diabetes does not have to be a death sentence and it is indeed possible to lead a healthy lifestyle while dealing with Diabetes.

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12-23-2020 20:27

You are such an inspiration!  Vision loss is so scary and everyone with diabetes needs to be educated in how to prevent it.  

Marlene Snow, MS, OTR/L, SCLV, CDECS