As most of you know, I am the mother of two amazing little girls. Zoey is now 18 months and a handful of fun and energy, and Elliana (Ellie) is now 5 months and trying so hard to keep up with her sister. I am the wife to Robbie, who is an Engineer, car enthusiast, and best of all, the greatest father I know. My days are busy, and full of laughter and love, but some are also full of pain and frustration.
I have been dealing with a chronic eye disease since my pregnancy with Zoey. I have had chronic Iritis, Uveitis, and now probably Glaucoma in my left eye for over 2 years now. My health has been a roller coaster the last few years, as I have gone through specialist after specialist trying to find someone who knows how to treat Uveitis. I have had to endure countless medications, countless injections and surgeries, and many nights of tears.
I have been dealing with a chronic eye disease since my pregnancy with Zoey. I have had chronic Iritis, Uveitis, and now probably Glaucoma in my left eye for over 2 years now. My health has been a roller coaster the last few years, as I have gone through specialist after specialist trying to find someone who knows how to treat Uveitis. I have had to endure countless medications, countless injections and surgeries, and many nights of tears.
Uveitis is a very rare eye disease. It can be simply defined as inflammation to the middle layer of the eye. It is responsible for 10% of the blindness in the US. As of now, I have it in my left eye, but my right eye is certainly not in the clear. Uveitis comes with extremely blurred vision (legally blind for the better part of 2 years), intense eye pain, constant migraines, dizziness, sensitivity to light (Sunglasses inside is no longer something I... mock.) dark floating spots, and most recently, cloudy, hazy vision (due to my pressure being sky high- likely glaucoma). I have been through so many treatments to manage my Uveitis, it seems unending. It is a chronic disease with no cure, and I will likely be managing its effects for the rest of my life, and doing everything I can to maintain some vision. I have been through emotional highs and lows with this disease. I have spent days crying, and also been so grateful to be able to SEE my girls each day.
The cause of the disease is something they also went through incredible amounts of testing for. After everything coming back negative, my specialist has told me I have an autoimmune disease of the eye. My immune system is attacking my eye, and causing the Uveitis. There are many other causes of the disease, but many of them (such as mine) are still being studied.
So far, I have had Cataract surgery, laser (to remove secondary cataracts), a steroid injection into the eye, ptosis repair (shortening the muscle that controls the eyelid) to repair damage done with the injection, nursing an infection that I got in the incision after the Ptosis surgery, and most recently, I am a part of a study at Duke University for an injectable implant that will deliver a steroid to my eye that will last 1-3 years. I have been on Prednisone (steroid) to treat the inflammation for 2 years now, and the affects it has had on my body is unreal. It has caused osteoporosis in my lower back, joint pain, weight gain, stretchmarks (even in places stretchmarks do not belong), and sleeplessness. The goal of the recent injection is to get me off the Prednisone. Along with that, I am on a cocktail of 6 different eye drops (most of which are 3-4 times a day). My treatment has been harder than most because I have either been pregnant or breastfeeding since being diagnosed, which makes the list of medications I can take a very short one. I am very excited at the idea of having a better treatment plan. I am seeing one of the best doctor's in the world for my condition, but as I have heard stories of hope from 5 other specialists I am also weary.
I wanted to share a bit about my story, and what is now my daily life, for a few reasons. First, my disease is not a common one, but with the proper research and awareness, doctors like mine may be able to find better ways to manage the disease. Less people may go blind, and more mothers, fathers, and grandparents will get to watch their children and grandchildren grow up. I cannot allow myself to think about not being able to see my babies grow. I would not wish that upon anyone. Secondly and equally as important, I wanted to remind others that just because someone with a chronic illness looks fine, does not mean that they are not sick. I have a sister in law with MS, and a friend with Lupus, neither of which "look" sick, but their day to day life is a struggle. Each morning we wake up sick, and we go to bed sick... regardless of how well we may look, because that is far from how we feel most days. Please keep that in mind when you meet someone with one of these conditions. Also keep that in mind when you see someone with sunglasses on inside. They may have a condition such as mine.
This was a few months after my first failed injection that caused Ptosis (damage to the muscle that controls the eyelid).
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After my Ptosis surgery:
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My eye after Ptosis repair and implant injection. (I am on dilating drops for my left eye, and through the process my eye has changed to a blue green, while my right eye is still brown)
The cause of the disease is something they also went through incredible amounts of testing for. After everything coming back negative, my specialist has told me I have an autoimmune disease of the eye. My immune system is attacking my eye, and causing the Uveitis. There are many other causes of the disease, but many of them (such as mine) are still being studied.
So far, I have had Cataract surgery, laser (to remove secondary cataracts), a steroid injection into the eye, ptosis repair (shortening the muscle that controls the eyelid) to repair damage done with the injection, nursing an infection that I got in the incision after the Ptosis surgery, and most recently, I am a part of a study at Duke University for an injectable implant that will deliver a steroid to my eye that will last 1-3 years. I have been on Prednisone (steroid) to treat the inflammation for 2 years now, and the affects it has had on my body is unreal. It has caused osteoporosis in my lower back, joint pain, weight gain, stretchmarks (even in places stretchmarks do not belong), and sleeplessness. The goal of the recent injection is to get me off the Prednisone. Along with that, I am on a cocktail of 6 different eye drops (most of which are 3-4 times a day). My treatment has been harder than most because I have either been pregnant or breastfeeding since being diagnosed, which makes the list of medications I can take a very short one. I am very excited at the idea of having a better treatment plan. I am seeing one of the best doctor's in the world for my condition, but as I have heard stories of hope from 5 other specialists I am also weary.
I wanted to share a bit about my story, and what is now my daily life, for a few reasons. First, my disease is not a common one, but with the proper research and awareness, doctors like mine may be able to find better ways to manage the disease. Less people may go blind, and more mothers, fathers, and grandparents will get to watch their children and grandchildren grow up. I cannot allow myself to think about not being able to see my babies grow. I would not wish that upon anyone. Secondly and equally as important, I wanted to remind others that just because someone with a chronic illness looks fine, does not mean that they are not sick. I have a sister in law with MS, and a friend with Lupus, neither of which "look" sick, but their day to day life is a struggle. Each morning we wake up sick, and we go to bed sick... regardless of how well we may look, because that is far from how we feel most days. Please keep that in mind when you meet someone with one of these conditions. Also keep that in mind when you see someone with sunglasses on inside. They may have a condition such as mine.
This was a few months after my first failed injection that caused Ptosis (damage to the muscle that controls the eyelid).
.JPG)
After my Ptosis surgery:
.JPG)
.JPG)
My eye after Ptosis repair and implant injection. (I am on dilating drops for my left eye, and through the process my eye has changed to a blue green, while my right eye is still brown)
I also wanted everyone to know that, as I seem to be somewhat caught up medically, I plan to jump back into reviews and giveaways!! If anyone has suggestions on things to be reviewed or would like to be sponsored in a review, please email me at renewablemommy@gmail.com!
Awww, Mama thanks for sharing, you might have been a wealth of information to someone that may have some of the same systems as you. I think I'm going to get my hubby to the eye doctor, maybe a new one as he has been complaining for the last two years and the doc doesn't 'see' anything wrong. Will be praying for you! God Bless,
ReplyDeleteThank you Steph! I would definitely advice seeing a different eye Doctor. Had my original doctor caught my disease I would have been a lot less likely to get the cataract, and my vision would likely be a lot better. I hope the best for him!
DeleteJess I can't tell you how much your story touched me. I, like many other people most likely, had no idea about all the health problems you've been dealing with. As someone who has been dealing with chronic depression for over 20 years, I can attest to the fact that just because someone "looks fine", doesn't mean they ARE fine. Some days it's a struggle for me to climb out of bed. I've been watching the progression of your family and those girls are absolutely beautiful. You certainly have some really good reasons to keep fighting, as do I. Don't ever give up. The information you've shared here will probably save several others from going through some of the pain and heartache you've gone through. I know every time I think I can't go on, I think about my husband, my kids and my two beautiful grandsons and what being without me would do to them. You may only be one person to the world, but to some very special people, you ARE the world. Always remember that. Much love to you and yours.
ReplyDelete