Re: iNFLAMMATION IN MY EYES!!!!

[Guest guest]

Yes I know the they don't get it, there should be a book, they don't get it.  However circulate among  your friends and family the " faces of Sarcoidosis " I got a couple calls on that, that said, I had NO idea of what you were going through, thanks for sharing the video.  That may help.

Have your doctors mentioned anything about adding another medication, like Methotrexate, Remicade, enbreal, etc.. there are many on the market now that treat RA, those are the ones they usually give us. I would think adding something would work, when the Pred wasn't doing much for me they added Methotrexate, and that worked really good for about 4 years or so.  Ask about it, I know I had to  push to get another drug added, don't be afraid to push, it is your eyes we are taking about here, not theirs????? 

 Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn

frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

Don't be sorry for venting to us. I do it too.

I have problems with my right eye. I have inflammation can't see take steroids, taper down and a month or 3 it starts all over again. I am being constantly tested for cataracts. They can be removed but it is a constant struggle to face this on a daily basis. I am afraid of losing my eyesight. My mother went blind about ten years ago.

I know not what to do to make the inflammation stay away I do what I have to.

It is a disgusting monster isn't it. And yeah friends and family don't understand---at all----. So it is good that you come here, The people in this group are so good and filled with knowledge. I thank God every day for finding them.

Crying is ok, Laughter is better but talking it out I believe is best. So go for it. Bend our ears and let us reach in your heart from ours. You are not alone in this we are all here for and with you.

Hang tough and take care.

Jackie

iNFLAMMATION IN MY EYES!!!!

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

AMEN Jackie, very well said.  To ALL   Jackie is so right We ARE ALL here for each other no matter the needs, be Sarcoid, personal, whatever. love ya all, Marla

" Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Don't be sorry for venting to us.  I do it too.  

I have problems with my right eye.  I have inflammation can't see take steroids, taper down and a month or 3 it starts all over again.   I am being constantly tested for cataracts.  They can be removed but it is a constant struggle to face this on a daily basis.  I am afraid of losing my eyesight.  My mother went blind about ten years ago.

I know not what to do to make the inflammation stay away I do what I have to.

It is a disgusting monster isn't it.  And yeah friends and family don't understand---at all----.   So it is good that you come here, The people in this group are so good and filled with knowledge.   I thank God every day for finding them.

Crying is ok, Laughter is better but talking it out I believe is best.  So go for it.  Bend our ears and let us reach in your heart from ours.  You are not alone in this    we are all here for and with you.

Hang tough and take care.

Jackie

iNFLAMMATION IN MY EYES!!!!

 

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

I'm sorry to hear of your recent bad news. It's scary to think of losing your eyesight. Mine has gotten worse by the year so I do get it. Hang in there and please vent here. we do understand even though we don't always respond quickly. hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: iNFLAMMATION IN MY EYES!!!!To: Neurosarcoidosis Date: Thursday, March 3, 2011, 5:06 AM

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to

my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

I am soooo sorry La. I don't know if he still visits the site, but Matt had the most eye issues, and would probably know the most about it. Maybe Rose will know if he can still be contacted.

Also, I'll tell you like all the kind folks here have told me. There is no problem with venting, and you don't have to apologize. We all know what you mean when you talk about friends and family not understanding. They are so afraid for you, and they want so bad to make it better; they just don't know what to do And when someone hasn't had to deal with chronic illness, they don't have a real idea of what your going through.

I know the ride is insane, but hold on as tight as you can. I know, it's the hardest thing you have ever done, and again I'm sorry your facing all this.

To: Neurosarcoidosis Sent: Thu, March 3, 2011 12:06:38 AMSubject: iNFLAMMATION IN MY EYES!!!!

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to

my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

Thank you all for the encouraging words, support, understanding and medical advice. I will definitely ask about the methotrexate or the remicade now that I finally have insurance. It does feel good to talk to people whom understand what I am going through. Hugs to all and thanks again.

To: Neurosarcoidosis Sent: Thu, March 3, 2011 6:35:08 PMSubject: Re: iNFLAMMATION IN MY EYES!!!!

I'm sorry to hear of your recent bad news. It's scary to think of losing your eyesight. Mine has gotten worse by the year so I do get it. Hang in there and please vent here. we do understand even though we don't always respond quickly. hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: iNFLAMMATION IN MY EYES!!!!To: Neurosarcoidosis Date: Thursday, March 3, 2011, 5:06 AM

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to

my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

Yes I will have to say this is the hardest thing that I have ever experienced. It is so frustrating. I want to work and continue on with my life. But that seems to be on hold right now. I was able to get my associates degree through being sick and finish with a 3.9 but had to stop because of the illness and my eyesight. I want to go back to school but am worried about the medication which blurrs my vision. of course you see I have not started it yet. I am only 36 and I feel like I have nothing to look forward to right now but doctors, illness, medicine and pain. My life had just begun and now it seems like its ending. If it was not for my children, I think they would be putting me in a crazy home at this point. I know and pray that things will get better. But right now while I am in this storm it just

feels like a whirlwind spiraling out of control and I cannot seem to stop it.

To: Neurosarcoidosis Sent: Thu, March 3, 2011 11:26:41 PMSubject: Re: iNFLAMMATION IN MY EYES!!!!

I am soooo sorry La. I don't know if he still visits the site, but Matt had the most eye issues, and would probably know the most about it. Maybe Rose will know if he can still be contacted.

Also, I'll tell you like all the kind folks here have told me. There is no problem with venting, and you don't have to apologize. We all know what you mean when you talk about friends and family not understanding. They are so afraid for you, and they want so bad to make it better; they just don't know what to do And when someone hasn't had to deal with chronic illness, they don't have a real idea of what your going through.

I know the ride is insane, but hold on as tight as you can. I know, it's the hardest thing you have ever done, and again I'm sorry your facing all this.

To: Neurosarcoidosis Sent: Thu, March 3, 2011 12:06:38 AMSubject: iNFLAMMATION IN MY EYES!!!!

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to

my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

Latanya, I am sorry you are feeling so awful. Have you tried telling your friends and family about how you are feeling? Many times they think they are making things better by being "light," but they only make things worse by letting us feel as if we are not being taken seriously. I know that when I did this with my husband, things got better (for a while).To:

Neurosarcoidosis Sent: Thu, March 3, 2011 12:06:38 AMSubject: iNFLAMMATION IN MY EYES!!!!

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn

frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

I have had inflammation (uveitis) in my eyes for 7 years. We can only keep it at

bay. I got cataracts in 2006 and had them removed and intra ocular lenses

inserted - is that not an option for you?

>

> Yes I will have to say this is the hardest thing that I have ever experienced.

> It is so frustrating. I want to work and continue on with my life. But that

> seems to be on hold right now. I was able to get my associates degree through

> being sick and finish with a 3.9 but had to stop because of the illness and my

> eyesight. I want to go back to school but am worried about the medication

which

> blurrs my vision. of course you see I have not started it yet. I am only 36

and

> I feel like I have nothing to look forward to right now but doctors, illness,

> medicine and pain. My life had just begun and now it seems like its ending. If

> it was not for my children, I think they would be putting me in a crazy home

at

> this point. I know and pray that things will get better. But right now while I

> am in this storm it just feels like a whirlwind spiraling out of control and I

> cannot seem to stop it.

>

>

>

>

>

> ________________________________

>

> To: Neurosarcoidosis

> Sent: Thu, March 3, 2011 11:26:41 PM

> Subject: Re: iNFLAMMATION IN MY EYES!!!!

>

>  

> I am soooo sorry La.  I don't know if he still visits the site, but

> Matt had the most eye issues, and would probably know the most about it. 

Maybe

> Rose will know if he can still be contacted. 

>

>

> Also, I'll tell you like all the kind folks here have told me.  There is no

> problem with venting, and you don't have to apologize.  We all know what you

> mean when you talk about friends and family not understanding.  They are so

> afraid for you, and they want so bad to make it better; they just don't know

> what to do  And when someone hasn't had to deal with chronic illness, they

don't

> have  a real idea of what your going through. 

>

>

> I know the ride is insane, but hold on as tight as you can.  I know, it's the

> hardest thing you have ever done, and again I'm sorry your facing all this.

>

>

>

>

> ________________________________

>

> To: Neurosarcoidosis

> Sent: Thu, March 3, 2011 12:06:38 AM

> Subject: iNFLAMMATION IN MY EYES!!!!

>

>  

> I went to the eye doctors for a follow up and received very disturbing news. I

> still have a lot of inflammation in my eye. The inflammation is causing me to

> have spots on my pupils. So the medicine that I have to take to get rid of the

> inflammation (durozel steroid drops) will cause me to get cataracts. However

if

> I do not treat the inflammation I can go blind. Then the drops that I have to

> take to get rid of the spot on my pupil dilate my eyes which will cause me to

> have blurred vision. I am sooooo disgusted and worried about loosing my eye

> sight and having cataracts. Does anyone know what else I can do to get rid of

> the inflammation in my eyes? I also had to up my dosage of steroids again to

> 60mg which is causing my blood pressure and diabetes to be sky high. I am

soooo

> damn frustrated and scared. I have been crying for the past three days, I am

> soooo damn tired of being sick and feeling like crap. I am sorry guys. I

needed

> to vent. When I talk to my friends and family, they do not understand. They

try

> to make light of the situation, joke to make me laugh or avoid the

conversation

> all together. They just do not get it!!!!!!

>

[Guest guest]

My episodes started 4 years ago with optic neuritis and vision loss for close. I had to undergo 25 solumedrol IVs plus being on 60 mg of prednisone. I was on this regimen with a slow reduction of prednisone. My vision always started acting up when I would get down to 30 and then I would have to go back up. Having another IV etc. I started acupuncture which helped me get off the IVs and allowed me to get lower on prednisone. I also then incorporated Carlson's lemon flavored fish oil to give my body more Omegas and several other vitamins. I tired numerous things. I always told myself I would try something three times and if it worked, great. If not, then I wouldn't. Acupuncture helped me tremendously. I have to get rid of a lot of different foods that were contributing to inflammation. Everytime I would get down to 13 to 15 mg of prednisone, my eye would flare up and I would be back up to 30 mg. It was scary. I do have damage to my eye but the doctors are amazed at how well I can see.

I am very busy with work so I would not eat correctly. I had good intentions of eating fruit through the day or veggies and would see the day was over and I had not eaten any. I also have diabetes and had to go on shots because of the prednisone treatments which was scary too because I could not see and had lost all capabilities as you all know. And, add to that people that do not understand and shy away from you.

I am now incorporating green drinks. I don't have the time to make them so I am drinking the Green Machine drinks and taking a slug besides V8 juice to get more veggies in and incorporating more veggies and fruits always making sure I have them in front of me. I am now down to 14 mg and doing okay and trying to get more spinach and have a salad every night to reduce inflammation. I am going to try to go to 13 but kind of scared as that has been the number where it flares up but am going to push more green drinks. I wish you could make them up ahead of time and even freeze them as it would help me. I also eat Greek yogurt every morning and take a probiotic to build up my immune system.

I hope that everyone that has this illness has completely stopped any artificial sweeteners as that is a major contributor. That is the reason why so many people are having neurological problems. I use to drink a lot of diet soda and have foods with them in like yogurt and puddings etc.. People with diabetes would have to go on stevia. More and more people are having those problems when I talk to them and they are using them. Plus make yourself aware of ALL the names it hides under. If anyone does not know, I will list them for you.

Kat

[Guest guest]

Wow Kat,

that was great information thank you. I have the swelling in my eyes also. It really has affected my left eye and I am just starting to decrease my predisone medicine. Right now I am at 50mg once a day. My MRI on Feb 15 showed that the inflammation had gone down tremendeously and the docs are pleased with my progress. I am suppose to decrease the medicine by 10mg every three weeks and by my next appt on April 21 I am suppose to be down to 30mg once a day. I have been really watching my diet by eating more protein rich foods and snacking on fruits and broccoli mostly with some peanut butter. I drink the V8 juices for my "soda" of the day treat. Is yogurt good for inflammation?? I have been having that for my mid morning snack. What foods do you have for the inflammation diet and what is the "green" drink??

thanks for your help.

To: Neurosarcoidosis Sent: Sat, March 5, 2011 12:52:08 PMSubject: Re: iNFLAMMATION IN MY EYES!!!!

My episodes started 4 years ago with optic neuritis and vision loss for close. I had to undergo 25 solumedrol IVs plus being on 60 mg of prednisone. I was on this regimen with a slow reduction of prednisone. My vision always started acting up when I would get down to 30 and then I would have to go back up. Having another IV etc. I started acupuncture which helped me get off the IVs and allowed me to get lower on prednisone. I also then incorporated Carlson's lemon flavored fish oil to give my body more Omegas and several other vitamins. I tired numerous things. I always told myself I would try something three times and if it worked, great. If not, then I wouldn't. Acupuncture helped me tremendously. I have to get rid of a lot of different foods that were contributing to inflammation. Everytime I would get down to 13 to

15 mg of prednisone, my eye would flare up and I would be back up to 30 mg. It was scary. I do have damage to my eye but the doctors are amazed at how well I can see.

I am very busy with work so I would not eat correctly. I had good intentions of eating fruit through the day or veggies and would see the day was over and I had not eaten any. I also have diabetes and had to go on shots because of the prednisone treatments which was scary too because I could not see and had lost all capabilities as you all know. And, add to that people that do not understand and shy away from you.

I am now incorporating green drinks. I don't have the time to make them so I am drinking the Green Machine drinks and taking a slug besides V8 juice to get more veggies in and incorporating more veggies and fruits always making sure I have them in front of me. I am now down to 14 mg and doing okay and trying to get more spinach and have a salad every night to reduce inflammation. I am going to try to go to 13 but kind of scared as that has been the number where it flares up but am going to push more green drinks. I wish you could make them up ahead of time and even freeze them as it would help me. I also eat Greek yogurt every morning and take a probiotic to build up my immune system.

I hope that everyone that has this illness has completely stopped any artificial sweeteners as that is a major contributor. That is the reason why so many people are having neurological problems. I use to drink a lot of diet soda and have foods with them in like yogurt and puddings etc.. People with diabetes would have to go on stevia. More and more people are having those problems when I talk to them and they are using them. Plus make yourself aware of ALL the names it hides under. If anyone does not know, I will list them for you.

Kat

[Guest guest]

La, I know that you received many responses to your post, but since I'm working my way forward, I'm going to go ahead & reply. Please forgive me if it's too little, too late. I'm not very knowledgeable about eye sarc, but will try to get some info on it. When you say that the pred drops will give you cataracts, has your doctor said that you will definitely get cataracts, or that you have an increased risk? Many times when we get scary news, our brain just takes in the worst thing & we really don't hear the rest. Taking long-term prednisone orally increases the risk of cataracts, but not everybody gets them. I wonder if it's the same with the drops. Secondly, even if you get cataracts, the surgery has a very high success rate. I did develop cataracts from the pred (although my mother & grandpa also had them, so it might have happened eventually anyway), but it was a blessing in disguise. I had been legally blind since childhood; basically had to put my glasses on to go to the bathroom at night. I wore contacts for many years, but had to give them up due to dry eyes. The cataract surgery gave me 20/20 vision! I had no pain, no problems. I still wear reading glasses for very fine print, but can read the newspaper & most books fine. Now every surgery carries some risk, even with the most experienced surgeons, but I personally don't know of anyone who had a bad outcome. You can develop a kind of secondary cataract (can't remember what it's called) which has to be removed. That happened to one of my eyes, but the removal was a very minor procedure. I haven't had any more problems in 8 years. I hope this gives you some hope & comfort; again, I'll try to get some more info for you regarding your condition.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: ladyt19119@...Date: Wed, 2 Mar 2011 21:06:38 -0800Subject: iNFLAMMATION IN MY EYES!!!!

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

La, I'm glad that you have insurance. It's sad, but true, that many doctors & hospitals treat you differently when you don't have insurance, requiring cash upfront, etc. Even if you have co-pays, the insurance often helps you get in the door, literally.

Ramblin' RoseModerator "I child-proofed my home and they STILL get in!" (Bumper sticker)

To: Neurosarcoidosis From: ladyt19119@...Date: Thu, 3 Mar 2011 22:28:40 -0800Subject: Re: iNFLAMMATION IN MY EYES!!!!

Thank you all for the encouraging words, support, understanding and medical advice. I will definitely ask about the methotrexate or the remicade now that I finally have insurance. It does feel good to talk to people whom understand what I am going through. Hugs to all and thanks again.

To: Neurosarcoidosis Sent: Thu, March 3, 2011 6:35:08 PMSubject: Re: iNFLAMMATION IN MY EYES!!!!

I'm sorry to hear of your recent bad news. It's scary to think of losing your eyesight. Mine has gotten worse by the year so I do get it. Hang in there and please vent here. we do understand even though we don't always respond quickly. hugs S.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: iNFLAMMATION IN MY EYES!!!!To: Neurosarcoidosis Date: Thursday, March 3, 2011, 5:06 AM

I went to the eye doctors for a follow up and received very disturbing news. I still have a lot of inflammation in my eye. The inflammation is causing me to have spots on my pupils. So the medicine that I have to take to get rid of the inflammation (durozel steroid drops) will cause me to get cataracts. However if I do not treat the inflammation I can go blind. Then the drops that I have to take to get rid of the spot on my pupil dilate my eyes which will cause me to have blurred vision. I am sooooo disgusted and worried about loosing my eye sight and having cataracts. Does anyone know what else I can do to get rid of the inflammation in my eyes? I also had to up my dosage of steroids again to 60mg which is causing my blood pressure and diabetes to be sky high. I am soooo damn frustrated and scared. I have been crying for the past three days, I am soooo damn tired of being sick and feeling like crap. I am sorry guys. I needed to vent. When I talk to my friends and family, they do not understand. They try to make light of the situation, joke to make me laugh or avoid the conversation all together. They just do not get it!!!!!!

[Guest guest]

I answered this once, but it disappeared into cyberspace, so this may be a repeat for some of you. Kat, that's a great approach. I like your process of trying something 3 times before deciding whether to continue it or not. It's so easy to get panicky & jump from one thing to another without allowing time to analyze the results. Then we may not be able to figure out what helped, what caused side effects, etc. Hopefully others will be able to use your process as a guideline

[Guest guest]

Kat. any particular type of enzyme pill?   glad you're doing better, I drink a lot of water, but hardly no veggies, and I know I need to step that up for sure!  I do the Veggie drinks, but probably too much sugar in them so that's not so good. 

Take care Kat. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

HI ,

Sorry for the delay in responding.   Just too much to do, too little time.

 

I have been drinking the Green Machine refrigerated drink, and the Carrot Orange plus the V-8.  They are handy.  I eventually want to start making some but I thought since I can't this would be a step in the right direction.  It took me a little bit to get use to the Green Machine but now I am use to it.  I has some fruit in it too.

 

I also have Greek Yogurt in the morning for breakfast.  I prefer the Greek God with a little bit of honey and add fruit, dried fruit, a little powdered flax.  Greek yogurt has probiotics in it.  I still continue my probiotic in the AM as well.  When I was on massive prednisone with the solumedrol IVs and 60 mg of prednisone I took one probiotic in the AM and one at night plus a lot of water to flush the toxins out.

 

I also still take Carlson's lemon flavored fish oil in the morning and just have some coffee or tea afterwards to get the taste out as it is liquid.  I can't take the capsules as they keep coming back on me.

 

I also recently started an enzyme supplement a few months ago which helps tremendously and I automatically lost weight believe it or not.   I lost 20 lbs just by taking those with meals.  If you take it with meals it helps you digest your foods, but if you take them in between meals it helps with healing.  I found a good brand and like them.

 

If you have more questions, let me know.   I am finally down once again to 13 mg of prednisone which has always been the magic number where my left eye acts up but I have just noticed a wee bit of problems but going to keep taking the drinks plus ensuring I get more green salads, fruits, and veggies in my diet.  I have also been purchasing this Alkaline Water called Eternal and having that on my desk at work.  I get so busy I forget to drink.   I love coffee and would always grab a sip of that and now trying to force myself to drink the water since I do have coffee but not as much as I use to.

 

Kat