As I sit here now, I am sad, stressed, scared, humbled and more then anything I am GRATEFUL. I feel all of these emotions on a daily basis. I feel them when I see an object that seems blurry,eye pain, or think my vision is becoming distorted. I feel anxiety about upcoming eye examinations weeks before I am even scheduled to go. This has become my new “normal”.
What is even normal? Who is to say what is normal. For me, and so many life with this disease is ever changing and we find out our new normal everyday. You have to listen to your body and be in tune with it, I always listen to my gut and what my body is telling me. I have struggled incredibly with my eye disease diagnosis for the past two years. I have felt a plethora of emotions.
As I sit here today I am grateful, grateful to have caring people around me. Grateful for a caring medical team looking after my eyes. My retina specialist is quite the doctor. He better be right? He is coming at me with a needle in his hand, straight for my eye! Ha!
I started receiving Lucentis injections in March 2015. I started with the left, and then my eye disease progressed to the right as well. So basically how it works is I have an injection in each eye every month. I have had to navigate many emotions, physical pain, guilt and the list can go on and on.
I am not writing this to scare anyone or be depressing. I just feel its so important to share the shitty parts of this disease when it is necessary to raise awareness. I also wanted to share how the appointment actually goes, because I get many questions about the actual procedure. I know I would have loved to have a blog to read before my first appointment. I made the mistake of watching a video on YOU TUBE… DO NOT do that to yourself.
If you are curious as to what is entailed in the procedure keep reading, if not check out the rest of my blog :) Please and thank you. Below is MY experience as different doctors have different routines and protocol ect.
- Arrive and sign proper paperwork
- read letters with each eye covered to check the vision deterioration
- numb the eye ball to check the eye pressures
- dilate ( this opens the pupils, and makes you sensitive to light and vision blurry) do not worry it will dissipate
- take pictures of the eye which is called tomography. Used to see swelling, and an overall idea of what is occurring behind the eye
- Administer numbing drops
- I am taken to a different room, doctor turns off light and looks at eyes with his equipment checks behind the eye ( you feel nothing)
- Doctor lays me back
- with a large q tip they clean the whole upper and lower eyelid to reduce infection.
- Doctors inserts a small device that keeps the eye open, you do not feel this
- Doctor administers a sterilizing solution ( this does burn for a minute or two)
- A mark is then made on the eye where he will insert the needle, you will feel a little pressure
- you do not move or talk
- the doctor will then insert the needle, you will feel pressure, sometimes a little pain. You are pretty numb, so do not be afraid. When its injected I personally see like a brown fluid bc the Lucentis is that color. The doctor will then remove the device that keeps the eye open, and will irrigate the eye a bit.
I want to be one hundred percent transparent. For me personally the worst is after the injection, and sometimes the following days. Once the numbing has worn off for me personally I am very sore, almost like a stinging sensation on the eye. I also have weeping, which is a constant watering of the eye, almost as if I was crying. I am very fortunate I have never had any major complications from these shots besides pain and unwanted down time. I have definitely not been able to escape emotional issues associated with all this. I know as hard as all this is it makes me a stronger, even though I really feel so weak at times like I am going to break. What I know is it is ok to have a meltdown. Have the meltdown, get pissed off then get back up and be a bad ass.
I would also like to say that I am so incredibly grateful that there is a treatment, without it I do not like to think of what my life would be like in the future. It was very bad before I got the courage to go in for the injection. I was literally on my way to losing my sight. I was not driving, I was not leaving the house I was completely paralyzed by anxiety of what was happening. Macular edema makes you see things very distorted, so things such as driving, reading, seeing faces clearly becomes very difficult.
I am so thankful I went for my yearly vision exam and they noticed the signs. I do not like to think of what would have happened if I had waited. PROMPT treatment is key. GET YOUR EYES CHECKED YEARLY. Glucose control and blood pressure monitoring is vital as well. Take your health serious and take good care of your body! Sometimes these complications can be prevented. I know I pray that my eyes will not get worse, but now in this moment I am so grateful at where my eyes are. Below are some images of where I was and where I am.
The top image is in March. Showing the swelling in my macula.
The bottom is from last week (November) there is no question I am fortunate because the injections are improving my eye and vision tremendously.
With this outcome.. heck, what is a shot in the eye a couple times a month ;)