Back & going blind???

[Kim]

Well, I just could not stay away from VTwin Mama! I actually deactivated my account I guess a couple of weeks ago. Due to being informed by my Retinal Specialist that I was going to go blind (left eye for now). This information really threw me for a loop and I saw my life going in an entirely different direction than what I want. It seems that my Diabetes has and is taking a toll on my eyes. I have been receiving shots in my left eye for 4 months with a drug that is used for treating Cancer (Bevacizumab). This is not approved by the FDA (for this situation). But my Retinal Dr. has been using it on a few selected patients. I happen to be one of them. He told me it has worked on all of them but me. What I have is bleeding blood vessells in the back of my eye (several of them). Two of them are almost on top of my Macular. Leaving him no options for lazer surgery or much of anything else. I also have a type of cataract that is associated with Diabetes. Or shall I say not uncommon w/Diabetics. He can not even remove it because it most assurdly would cause me to go blind immediately. He said it would be very dangerous for me. I have seen 3 eye Dr's. and a Retinal Specialist. They all tell me the same thing. I have floaters in my vision that are coming and going. Those are like little black dots just floating around in your line of sight. When I was given this news all I could think of was riding my Bike, Reading and visually seeing my Grandkids. Also, must admit, I began to wonder how in heck someone like me who is extremely independant would cope with doing things at my age.
I have only three hopes left. One is pray, two is a miracle and three is appointments with my Endocrinologist and my Internist. This will take place on Wednesday this week. I am praying that they will know of something that will work that my Retinal Doc does not know about. I know there are a lot worst things than loosing your sight. But d*** this just upsets me!!! I have always been one to be the strong one. A Daughter with Cancer a Husband with really bad knees. I did not even know how to handle telling them and have not told anyone but my DH & Daughter. My best friends do not even know. All I knew to do was go within myself and find a way to accept this. I was not given a time frame. I do not think he even knows. But, I know this if I can not find a solution it will happen. I tell you how stuipdly I dealt with this; I walked out into my Street and covered my left eye to see if I could see well enough with one eye to ride. Still not sure, the hand covering the eye was not a good simulation of the situation I guess. Well, I missed VTwin Mama terribly and all of you Ladies. So until I can not read any longer I can not leave!!!

[amethaelf]

Oh no, thats just terrible news. I feel for you so much. I have a friend who has a daughter who was diagnosed with an eye disease which they said would cause loss of sight. It took several opinions and about 6 months before finally they got onto the right treatment and her sight has now stopped worsening. The medical profession really works wonders, although you will still get the negative opinions, disregard them and keep on looking for positive news. You have to be strong, and I can tell by your post that you are most definately that. Reading your post makes me worry for my husband, he just found out he has diabetes yet is ignoring it, is reluctant to go for blood tests, doctors visits, etc. Please keep us informed with your ongoing treatment. They are a lovely lovely bunch of ladies here, very caring and supportive. (I would be the same as you with my first and major thought being could I still ride?) Thinking of you and really wanting to hear how your visit on Wednesday goes, if at all possible.

[susanL]

Kim you will be in my prayers also. I can completely understand how upsetting that must be. DH was rushed to the surgeon this week because his retina was becoming detached, fortunately they were able to do laser surgery on him. As wives and mothers we usually are the "rocks" and we feel we let others down when we're not a 100%, but at times like these we have to share with others and our families so they can support us. Keep researching and looking for more opinions from other doctors, hospitals, universities..etc. Glad you're not giving up! Hugs.

[sportygrl]

You stay vigilante on finding answers. DON'T give up, just like you didn't give up on learning to ride. We hear stories all the time about how persistence pays off, and I'm going to think positively that persistence will pay off for you too. You are in my prayers.

[DaisyMae]

Oh Kim I feel horrible for you. You will certainly be in my prayers. I think of you every time my little bell rings and it will remind me to offer a prayer. I hope you can keep riding and keep reading for a very long time!

[SFW]

You will be in my prayers!
I can't imagine what your going thru. Keep up being positive, altho thats hard, keep trying.

[PIPEDRMZ]

You stay vigilante on finding answers. DON'T give up, just like you didn't give up on learning to ride. We hear stories all the time about how persistence pays off, and I'm going to think positively that persistence will pay off for you too. You are in my prayers.

Oh Kim, so sorry to hear about this.... I agree with sportygrl.....no matter what you hang in there and never give up. Everyday there are reports of progress made in medicine and new treatments for all kinds of conditions. Should I hear of anything that could help you I'll be sure to forward it to you right away. I will keep you in my prayers!

[firefly]

Kim, I am so sorry to hear the bad news. But as everyone said, don't give up. They might find something they can do, if not today, then maybe tomorrow. I will keep you in my thoughts and prayers!

[Condor]

Good Gracious......you certianly have been dealt a big one. I have several friends that only see out of one eye, and two of them ride motorcycles.
Will pray for a miracle for you, and the strength to get through this. Glad you have decided to stick around. And don't forget, at the upper left corner of the page, you can click on the up or down arrow to make the print bigger here.

[tkt2ride]

I'll keep positive thoughts for you. {{hugs}}

[Trish]

Please start getting a very tight control on your blood sugars ASAP. Do not use your pointing finger or middle finger for testing anymore-you may need their sensitivity some day. Fingers get calloused and numb after years of testing. This is terrible news to have to absorb, but don't give up--ramp up your control. Keep a strict food log and BG log. UV protection for your eyes, anything to reduce eye strain. (I don't know what you do or how you do it, so if you already do these things now-disregard the post) Hope you ride as much as possible, and hope your eyes do better. Research eye problems and different university's programs. If they are still progressing, try to learn what you need to learn BEFORE you need them.

[Kim]

Thank you Ladies, I really needed some encouragement and especially the prayers. My head and emotions are back to being in the right place and I will not give up.

Condor - you just gave me the hope I needed!!!! Your friends riding with one eye!!! I was thinking about that and got scared that it was a crazy thought. Now I know it can be done. THANK YOU!!! Also, thanks for letting me in on the bigger font. I already need that. Maybe I will go on line today and order a Pirate's Patch and start training while I still have some sight in both eyes.

Amethaelf: Please get your DH to go get his Blood work, etc., even if you have to kick his butt!!! I have been a D. for a very, very, very long time. The damage it has done to my legs, heart and eyes is really scarey. I am on so many drugs and I just hate it. But, have no choice. D. affects and damages every single part of your body and once the damage is done there is no going back. I have a very dear friend who is maxed out on d. drugs and is now having to have his foot taken off because he did not do what he was suspose to do!!

Trish: I keep very strict records, written and through my tester. I take it in once a month to my Doc office for a computer download that keeps graphs and charts, etc. for me. I try to stick my arms as much as possible because of numbness. I do my A1C every 3 months and my #'s are in line but after years and years the damage is done. I am actually a health freak.

Once again, thank you all very much!

[CieBme]

Oh Kim, what a tough blow to deal with.

Had to read this through a couple times to really digest - so very, very sorry that things look rough right now, but know we will be keeping you in our thoughts and prayers.

My aunt went blind early on from glaucoma, and Dad is suffering the ill-effect of years of D neglect and hard living.

I have the big D, and I hate to admit that over the past two years I've let "busy-ness" and external factors take over my sensibility of keeping records and doing what I'm supposed to do. Haven't needed meds b/c of diet control, but I've slacked off on keeping track. I would never try to diminish what you are going through - the severity of what you are facing - but have to thank you from the bottom of my heart for the courage you've shown in posting. Not only did you update us on your life, but you've given me a "check-up from the neck-up" on why I have no other choice than to ALWAYS do what I'm supposed to do. Will be going to the doctor for this later this week (first time this year) ... and just now b/s was 251 (< 1 hr after breakfast) - which was an hour or so too soon to check for me, but just wanted to prove to myself I am serious. And committed.

Yesterday was in a 6 hr meeting and by hr four, I was dragging. If I'd planned better, that wouldn't've happened. As I was fogging out, your post went through my head. Not so much the dire consequences, but the thought that (on my part) much is preventable. I have the knowledge and the tools, but too many times choose not to use them. How dumb is that?

Take care of yourself, do whatever research you need to and keep us posted.

Hugs,
Cie

[Kim]

Cie sent you a PM.

[Wyomom]

I am so sorry for all this crap you are having to go through. I know what it is like to have problems with your eyes. I have been in glasses since I was 4 and contacts since I was 8. My family (both paternal and maternal) have macular (sp?) degeneration, histories of detached retinas, floaters...everything you described. No diabetes, just shisty eyes. I know what it's like to want to see everything for as long as you can. I have been told there will come a time when I can't wear my contacts anymore and in my glasses, I can't drive. I very much hope they can find a way to save your sight. Our eyes are amazing organs and even with one eye, it will compensate for the lost one. My thoughts and prayers are sent and please don't leave the website!

[Blacktop]

Kim,
I can't imagine all the emotions you must be feeling.I'm also one to retreat within myself Please know I will keep you lifted up in prayer.Keep all of us posted.((HUGS))

[malteseyo]

I'm so sorry Kim. I surely hope that they can find an answer to this. As others have said, don't give up. Prayers sent your way!

[DaisyMae]

Kim, still thinking and praying for you! My stepson has been dealing with a virus that could affect his eyesight, so I am particularly sensitive to that right now. I keep looking at his little 6 month old son's face and thinking how horrible it would be if he could not see those bright eyes or smile that would melt your heart. My mother had macular degeneration as well. Our health is so precious!

[PIPEDRMZ]

Hi Kim - After reading your post I became so up set that I looked on the internet to find a solution for your eye sight challenge.
Do you know if you're a candidate for laser surgery? Either way check out the link below.

http://www.nei.nih.gov/health/diabetic/ ... thy.asp#4f

Have you considered going to an eye institute outside of your area? Those places usually have cutting edge treatments that are not available anywhere else. Please keep us posted as to how you're doing and I'll let you know if I come across any other information that might help you.

[Trish]

Hi Kim - After reading your post I became so up set that I looked on the internet to find a solution for your eye sight challenge.
Do you know if you're a candidate for laser surgery? Either way check out the link below.

http://www.nei.nih.gov/health/diabetic/ ... thy.asp#4f

Have you considered going to an eye institute outside of your area? Those places usually have cutting edge treatments that are not available anywhere else. Please keep us posted as to how you're doing and I'll let you know if I come across any other information that might help you.

Very true. No matter how good the doctor is, they can't keep up with it all and if things aren't available to them, they may not even be aware they exist or totally forgotten about them because for them, it's not an option. At an eye center or university, they are constantly challenged with new info and you might hit the jackpot!

[CieBme]

Agree w/ Pipe and Trish - I used to work at a teaching medical university, and not only are these the guys/gals that are at the top of the curve - but often are the ones creating new procedures and techniques! Yes, yes - if you can get into University of Mississippi system - they have an excellent retinal division of eye care dept, as well as diabetes (endocrinology dept.) care. Sometimes having both under one roof gives the patient a greater chance of cross-talk btwn specialtist, and an advocacy group in your back pocket!

Again - thanks so much for helping me get focused!

[Kim]

Pipe - thank you so much for doing some research on this. I truly appreciate it more than I can tell you. I will check into it immediately. I am willing to go anywhere at anytime to keep my eye sight.

You are not going to believe this but, I have now been to 9 Dr's., including my Internal Med & my Endoc. Doc. they are all in agreement that I am not a candiate for lazer. Two of them are almost on top of my Macluar. Just to dangerous. If they were not so close then I could have them lazered.

From what I am told by all of them is once the damage is done from Diabetes there is no going back. I am now on additional med's that they say will help stop any further decline in my eye sight. If that is true it will be a blessing.

Thanks Trish I value you opinion.

Cie - take care of your D, please. You do not want to be on all these med's, I promise!!!!

[CieBme]

Getting back on track, Kim... thanks for your concerns. Geeze, I sure hope the news starts getting good for you.

Many thoughts and prayers,

Cie

[Carolan]

Kim, I've lost about 2/3 of the sight in my right eye due to inflammation associated with my rheumatoid arthritis (called uveitis or iritis). It happened fast - I had a checkup and all was well, then a couple months later I went to rub my left eye and wast startled to discover almost half the inside peripheral vision of my right eye was gone. My left eye is dominant so with both eyes open, I hadn't noticed it. The iritis combined with glaucoma caused the pressure to skyrocket and even though I had emergency surgery to alleviate the pressure, the vision was gone. I can still see through a blurry window in roughly the upper right quadrant in that eye, so I have some outer peripheral vision left. I can also see through a small circle straight ahead, so it, for example, I closed my left eye and looked straight into your face, I could see one side of it but not the other. The left eye, thankfully, remains normal though I take drops in it for glaucoma.

Anyway, my point is that I still intend to ride as long as I keep passing the state driver's license eye test. As long as you've got one good eye, you're golden. You'll just have to be extra cautious about riding, driving walking, and wise-@ss offspring who enjoy making faces and goofy gestures on my blind side for their own amusement.

[Zoom]

OK, NOW I understand. I am slow to get around the board and sometimes I don't come down the page to the other sections if I don't have a lot of time. I have tried and tried to figure out how or why you went from KimL to Kim. After reading this I know. I am sorry to hear about the damage that has already been done. I will have you in my prayers.

*Hugs*