I have learned alot about myself and other people. Life is too short to worry about the small stuff. Smile and laugh every day. It is truly the best medicine especially for me. I'm physically doing okay. I lost alot of muscle strength which I'm working on and my balance is off. I've always been off balance anyway so no big deal. I did lose 25 Lbs and looking awesome!
The damage in my eye is nerve damage caused by Lupus or something else. It's the 80% Lupus, 20% unknown disease. The doctors don't know if I will fully recover my eyesight. Only time will tell. My Prednisone was lowered so thats good news. It may help me sleep and not feel hungry all the time. Also, it may get rid of the metal taste...gum is my best friend.
Headed to a Lupie Groupie tonight. I hope to learn something new.
Thursday, April 28, 2011
Saturday, April 23, 2011
I hate Prednisone or do I hate "Lupus" more?
I've lost 30 LBs, and now that I'm on Pred, I'm gaining weight. I torture myself by eating only 3 meals a day. Breakfast is Greek yogurt, lunch and dinner consists of veggies and a small protein. My Rhem told me to forget about losing weight, "it's impossible and you will gain weight." It's not fair. If you ask a doctor and I've asked many why and how to stop gaining weight, they have always said its just a fact. It can not be helped.
I'm always hungry. One night, I tried binging to stop the hunger. It didn't matter how much or how many calories I ate, it doesn't stop. I gained a few pounds just from that night. I drink about 90 ounces of water a day to fill the void every day.
I'm going out to dinner with friends tonight to one of my favorite Mexican restaurants. I can't eat or drink (my meds don't allow me to have any alcohol) since I don't know how the food is cooked and all the food is high fat. I'm going to eat my salad before I leave the house and hopefully they won't notice I didn't touch the food I ordered.
On Monday, I'm going to beg to have my dosage reduced when I see the eye doctor. I hope that the inflammation has gone down. I still have blind spots in my left eye which I'm starting to think its permanent.
On a better note, I think I see the end of this craziness. Docs told me about 6 months..1 month down, 5 more to go.
I'm always hungry. One night, I tried binging to stop the hunger. It didn't matter how much or how many calories I ate, it doesn't stop. I gained a few pounds just from that night. I drink about 90 ounces of water a day to fill the void every day.
I'm going out to dinner with friends tonight to one of my favorite Mexican restaurants. I can't eat or drink (my meds don't allow me to have any alcohol) since I don't know how the food is cooked and all the food is high fat. I'm going to eat my salad before I leave the house and hopefully they won't notice I didn't touch the food I ordered.
On Monday, I'm going to beg to have my dosage reduced when I see the eye doctor. I hope that the inflammation has gone down. I still have blind spots in my left eye which I'm starting to think its permanent.
On a better note, I think I see the end of this craziness. Docs told me about 6 months..1 month down, 5 more to go.
Friday, April 22, 2011
Do I really have Lupus?
My life was normal...mundane, in fact. I went to work, came home, fed and walked the dogs I then went to the healthclub for a 1 to 2 hour workout and 2 times a week, I worked out with my Personal Trainer. Then came home and went bed...pretty simple. I only blogged about weight loss...simple.
2 months ago, I was diagnosed with Iritis in both eyes. My eye doctor sent me for blood work which confirmed Lupus. From there, since I have HMO, I went to my doctor who did more blood work, and also confirmed Lupus. She sent me to a Rhematologist who told me I have Lupus but only 2 markers which means I don't have full Lupus. I have some joint pain in my knees and hips and I get tired really quickly. I have Lupus and something else...Huh?
1 month ago, I had several strokes in my left eye which caused temporary blindness. The vision came back but I was told to take a daily aspirin and get off the birth control pill since it can cause clots.
3 weeks ago, I completely lost my vision in my left eye. I was sent to a retina specialist who ordered a MRI of my brain asap. They found white spots on my brain but they are not sure what they could be...
My Optic nerve and vessels in my eye were inflammed. I also went to see my Rhem that same day who precribed 3 days of IVs of Son-mentrol(I think thats the name...its prednisone) 1000 mgs in 3 days...OMG. The side effects were horrible. Loss of appetite, emotions out of control, and did I mention the shakes...the shakes had gotten so bad that I couldn't stand up at times. I've lost alot of muscle that I worked on for 2 years that now I have to start from scratch. My personal trainer has now turned into a physical therapist. Luckily, he is trained in both.
In the meantime, I was commuting 40 minutes to Will's Eye hospital for 2 days and many tests, to find out they don't know why it happened or if this is a symptom of Lupus. My Rhem doesn't even know if it Lupus or some other autoammuine disease. The specialist at Will's eye removed me from the baby aspirin since she didn't like what it was doing to my blood flow in my eye. They only know that if they don't do something fast, it may travel to my other eye or worse.
15 pills a day, I'm finally getting my vision back. I'm worried though, what happens when I stop taking all these meds? Will this attack my eyes again or another part of my body..
Has anyone heard of Lupus attacking the eyes?
2 months ago, I was diagnosed with Iritis in both eyes. My eye doctor sent me for blood work which confirmed Lupus. From there, since I have HMO, I went to my doctor who did more blood work, and also confirmed Lupus. She sent me to a Rhematologist who told me I have Lupus but only 2 markers which means I don't have full Lupus. I have some joint pain in my knees and hips and I get tired really quickly. I have Lupus and something else...Huh?
1 month ago, I had several strokes in my left eye which caused temporary blindness. The vision came back but I was told to take a daily aspirin and get off the birth control pill since it can cause clots.
3 weeks ago, I completely lost my vision in my left eye. I was sent to a retina specialist who ordered a MRI of my brain asap. They found white spots on my brain but they are not sure what they could be...
My Optic nerve and vessels in my eye were inflammed. I also went to see my Rhem that same day who precribed 3 days of IVs of Son-mentrol(I think thats the name...its prednisone) 1000 mgs in 3 days...OMG. The side effects were horrible. Loss of appetite, emotions out of control, and did I mention the shakes...the shakes had gotten so bad that I couldn't stand up at times. I've lost alot of muscle that I worked on for 2 years that now I have to start from scratch. My personal trainer has now turned into a physical therapist. Luckily, he is trained in both.
In the meantime, I was commuting 40 minutes to Will's Eye hospital for 2 days and many tests, to find out they don't know why it happened or if this is a symptom of Lupus. My Rhem doesn't even know if it Lupus or some other autoammuine disease. The specialist at Will's eye removed me from the baby aspirin since she didn't like what it was doing to my blood flow in my eye. They only know that if they don't do something fast, it may travel to my other eye or worse.
15 pills a day, I'm finally getting my vision back. I'm worried though, what happens when I stop taking all these meds? Will this attack my eyes again or another part of my body..
Has anyone heard of Lupus attacking the eyes?
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