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?
Debra0
Thursday, April 28, 2011
Different thoughts...mind wondering
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.
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.
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
Debra0 comments
My Anniversary Gift
My husband, Hal, has been my number one fan of reading my blogs. He tells me that I'm a good writer and when you write with your heart its beautiful. I figured I would take a mini break from writing about Lupus and write about my hubby.
My dear mother is your typical mother. She wants you to be married, but I was only 21. She placed an ad in the local paper. At that time, the Internet wasn't invented yet for public use. Image that? I received 18 responses from this advertisement and went out with half. Hal was the last one. I've been with him ever since.
I love him with all my heart and all my soul. He is my best friend, and just like he told me, I'm a better person for knowing him. Thank you for letting me lean on you for support when its needed and thank you for putting up with my stubborn attitude. Thank you for making me laugh even when I think its impossible to crack a smile.
For my gift to Hal, I'm giving him: a gift certificate to a hot air balloon ride but in the autumn. I will post the pictures as soon as they are available. They should be awesome!
I love you Hal. Happy anniversary!
I love him with all my heart and all my soul. He is my best friend, and just like he told me, I'm a better person for knowing him. Thank you for letting me lean on you for support when its needed and thank you for putting up with my stubborn attitude. Thank you for making me laugh even when I think its impossible to crack a smile.
For my gift to Hal, I'm giving him:
I love you Hal. Happy anniversary!
My friends call Me Lupie
Saturday, June 25, 2011
Clean Living
A few months ago, I decided to eat a clean diet. This consisted of organic foods when readily available. No animal products except for dairy. I haven't been able to kick the dairy habit yet. I also decided to go gluten-free which I'm almost there. I haven't kicked the cereal habit. I love my cereal and I haven't found a cereal that is tastes good, gluten free, low sodium, and low sugar. Maybe I'm asking for too much?
Now, I'm thinking what would clean living consist of? Would that consist of reducing the amount of material things I own? I could do that except I love electronics. Hal tells me that women are not into electronics. I never said I was your typical female. I love football, baseball and a good beer. YUMMM...Beer. How I miss you so! My electronics include my Kindle which I've started reading again, slowly but its progress.
Or is clean living getting rid of the cobwebs in your head? Lupus put alot of spiders in my head and I think I'm ready to remove them. I want the negative thoughts gone and replaced with positive thoughts that will make my life happier. I think this can be done. Who's with me?
This is a work in progress. I will keep writing about this at a later date.
Now, I'm thinking what would clean living consist of? Would that consist of reducing the amount of material things I own? I could do that except I love electronics. Hal tells me that women are not into electronics. I never said I was your typical female. I love football, baseball and a good beer. YUMMM...Beer. How I miss you so! My electronics include my Kindle which I've started reading again, slowly but its progress.
Or is clean living getting rid of the cobwebs in your head? Lupus put alot of spiders in my head and I think I'm ready to remove them. I want the negative thoughts gone and replaced with positive thoughts that will make my life happier. I think this can be done. Who's with me?
This is a work in progress. I will keep writing about this at a later date.
Sunday, June 19, 2011
Happy Father's Day
I'm wishing all fathers a Happy Father's day.
I'm hoping that my dad is having a nice Sunday morning reading the paper from front to back. I hope the all the cigars he is smoking now are the best Cubanos and he is wearing his favorite Cubano shirt. It's how I remember him and when he was at his happiest.
I'm hoping that my dad is having a nice Sunday morning reading the paper from front to back. I hope the all the cigars he is smoking now are the best Cubanos and he is wearing his favorite Cubano shirt. It's how I remember him and when he was at his happiest.
Wednesday, June 15, 2011
Here's to you!
Short and Sweet!
I feel blessed to have my Lupie friends. Some of you have made me laugh so hard, I fell off my chair. Laughter is the best medicine. You have made me feel not alone with this @#%$ disease and I'm so glad and honored to know you.
God Bless you all!
Grant insight to those who bring healing, courage and faith to those who are sick, love and strength to us and to all who love them. God, let your spirit rest upon all who are ill and comfort them. May they and we soon know a time of complete healing, a healing of the body and a healing of the spirit and let us say: Amen.
I feel blessed to have my Lupie friends. Some of you have made me laugh so hard, I fell off my chair. Laughter is the best medicine. You have made me feel not alone with this @#%$ disease and I'm so glad and honored to know you.
God Bless you all!
Grant insight to those who bring healing, courage and faith to those who are sick, love and strength to us and to all who love them. God, let your spirit rest upon all who are ill and comfort them. May they and we soon know a time of complete healing, a healing of the body and a healing of the spirit and let us say: Amen.
Monday, June 13, 2011
Is it my naptime yet?
How is is possible to be so tired that your body hurts? I've been like this for days now.
I don't smoke and haven't smoked in 20 years. I eat better than most people in the USA. I can say that since I limit my sugar, carbs, calories, salt, and its a well balanced plan. I exercise more than I ever did now then when I was in my 20s and 30s. I probably could out run someone half of my age if I wasn't so tired.
In fact, I'm too tired to finish this blog. Could someone finish it for me? Perhaps in the comment section? Thank you for your help.
I don't smoke and haven't smoked in 20 years. I eat better than most people in the USA. I can say that since I limit my sugar, carbs, calories, salt, and its a well balanced plan. I exercise more than I ever did now then when I was in my 20s and 30s. I probably could out run someone half of my age if I wasn't so tired.
In fact, I'm too tired to finish this blog. Could someone finish it for me? Perhaps in the comment section? Thank you for your help.
Wednesday, June 8, 2011
Guilty or Not Guilty
Last night was my first of 5 self help classes for Lupus. I'm looking around the room thinking how did I get here? Do I belong to this group? Why do I feel guilty for sitting with these people? How can I complain about my problems when these people can't seem to get up in the morning without pain? Some Lupus patients have kidney failure, heart problems, and crippling pain. What gives me the right? I'm not sure. Is it all relative to the situation?
However, this is my blog, and I'm allowed to complain here without the guilt. Childlike, perhaps, but whatever.
I didn't take my medication last night and now I feel like crap, emotionally and physically. I'm having trouble with my vision this morning. I can see the damage which is quite annoying. I have ugly ulcers in my mouth (which is a new thing), my pissed off knee pain , all over body nerve pain, and the fatigue have greeted me this morning with a sunny hello. I also didn't sleep well so that makes everything worse. Oh, and one more fun filled thing to happen to me, I have rash on my back.
However, this is my blog, and I'm allowed to complain here without the guilt. Childlike, perhaps, but whatever.
I didn't take my medication last night and now I feel like crap, emotionally and physically. I'm having trouble with my vision this morning. I can see the damage which is quite annoying. I have ugly ulcers in my mouth (which is a new thing), my pissed off knee pain , all over body nerve pain, and the fatigue have greeted me this morning with a sunny hello. I also didn't sleep well so that makes everything worse. Oh, and one more fun filled thing to happen to me, I have rash on my back.
Sunday, June 5, 2011
For my friends.
Ignorance of Lupus. It happened again!
6/5/11 Added: I was eating a slice of carrot cake (not on my special diet but tasted sooo good) and asked one of my co-workers if he would like a piece. He said yes, and I told him jokingly he would get Lupus and then he changed his mind. He was afraid he would get my disease. For some reason, that actually hurt my feelings. Is this stupid to worry about what other people think of you?
**********************************************************************************
Since this is Lupus Awareness Month, I thought I would post several things people have said to me or about me...
Lupus is cancer, right?
She has a disease because she works out to much. It caused her to go partially blind...
Lupus is contagious.
In a meeting, I have to sit in a certain spot to see all the co-workers. This"person" said, wait, I'll make the print on the screen larger so you can see...THANKS for reminding me about my eyesight...and announcing it to the rest of the company. Thank you for reminding me I have Lupus on a daily basis.
I have a new wonderful statement that I almost threw a left hook: "You look great for someone who is sick"
**********************************************************************************
Since this is Lupus Awareness Month, I thought I would post several things people have said to me or about me...
Lupus is cancer, right?
She has a disease because she works out to much. It caused her to go partially blind...
Lupus is contagious.
In a meeting, I have to sit in a certain spot to see all the co-workers. This"person" said, wait, I'll make the print on the screen larger so you can see...THANKS for reminding me about my eyesight...and announcing it to the rest of the company. Thank you for reminding me I have Lupus on a daily basis.
I have a new wonderful statement that I almost threw a left hook: "You look great for someone who is sick"
Thursday, June 2, 2011
I need a good laugh.
The last time I went to Will's Eye Hospital back in March, I was nearly blind in my left eye. I wish I was exaggerating. I was a mess. I was taking the train into the city, and then returning back to the suburbs to have the IV of Solumedrol. It was one of the worst experiences in my life.
When I left Will's Eye, I asked the receptionist when do I need to come back for a follow up? She said that we will call you.
I waited a few days and didn't hear back from the doctor or the hospital. I called, the person who answered said, "Why would the doctor want to talk to you, she sees 50 patients a day." If you need your test results, you can call the 800 number. I told her the reason I'm calling is I'm going blind. I was devastated, hurt and felt abandoned by what I thought was one of the best eye hospitals in Pennsylvania. My general ophthalmologist also felt the abandonment. He told me he was going to help me but this is not his speciality. Between the Rheumatologist and my general ophthalmologist they worked out a game plan of drugs and checking my eye sight.
Recently, my general opholmologist asked me to make an appointment with the hospital again to check make sure he didn't miss anything. The anxiety started. I called, the woman again wanted to know why I was calling, who told me to call, and a thousand unnessary questions.
Today was my appointment and I told the doctor who immediately sent in the office manager. The doctor was so shocked and so was the manager. I told the office manager the receptionist violated my rights as a patient to see her doctor. They know who it was by the notes in the computer, and they are taking immediate action. I hope they fire her and not move her to a different building. Once that little red light of anger goes off in my head, you will need to run for the hills.
Dr. Hall @ Will's told me if any changes do happen at any point, to contact her or the office manager directly. Worst case, if I can't get through, I can go to Will's Eye emergency room where she will meet me. They have concerns of this repeating itself and attacking my right eye. I have to go back in 6 months for a re-check.
I lost a good portion of my eyesight in my left eye. I was told it was too late for my eye to repair itself.
To be honest, I'm feeling pretty crappy! I could use a good laugh right about now. Besides the eyes, I still have nerve pain and now my left hand won't stop shaking. I've said it before and I will keep saying it, LUPUS SUCKS.
When I left Will's Eye, I asked the receptionist when do I need to come back for a follow up? She said that we will call you.
I waited a few days and didn't hear back from the doctor or the hospital. I called, the person who answered said, "Why would the doctor want to talk to you, she sees 50 patients a day." If you need your test results, you can call the 800 number. I told her the reason I'm calling is I'm going blind. I was devastated, hurt and felt abandoned by what I thought was one of the best eye hospitals in Pennsylvania. My general ophthalmologist also felt the abandonment. He told me he was going to help me but this is not his speciality. Between the Rheumatologist and my general ophthalmologist they worked out a game plan of drugs and checking my eye sight.
Recently, my general opholmologist asked me to make an appointment with the hospital again to check make sure he didn't miss anything. The anxiety started. I called, the woman again wanted to know why I was calling, who told me to call, and a thousand unnessary questions.
Today was my appointment and I told the doctor who immediately sent in the office manager. The doctor was so shocked and so was the manager. I told the office manager the receptionist violated my rights as a patient to see her doctor. They know who it was by the notes in the computer, and they are taking immediate action. I hope they fire her and not move her to a different building. Once that little red light of anger goes off in my head, you will need to run for the hills.
Dr. Hall @ Will's told me if any changes do happen at any point, to contact her or the office manager directly. Worst case, if I can't get through, I can go to Will's Eye emergency room where she will meet me. They have concerns of this repeating itself and attacking my right eye. I have to go back in 6 months for a re-check.
I lost a good portion of my eyesight in my left eye. I was told it was too late for my eye to repair itself.
To be honest, I'm feeling pretty crappy! I could use a good laugh right about now. Besides the eyes, I still have nerve pain and now my left hand won't stop shaking. I've said it before and I will keep saying it, LUPUS SUCKS.
Debra0 comments
My friends call Me Lupie
Saturday, June 25, 2011
Clean Living
A few months ago, I decided to eat a clean diet. This consisted of organic foods when readily available. No animal products except for dairy. I haven't been able to kick the dairy habit yet. I also decided to go gluten-free which I'm almost there. I haven't kicked the cereal habit. I love my cereal and I haven't found a cereal that is tastes good, gluten free, low sodium, and low sugar. Maybe I'm asking for too much?
Now, I'm thinking what would clean living consist of? Would that consist of reducing the amount of material things I own? I could do that except I love electronics. Hal tells me that women are not into electronics. I never said I was your typical female. I love football, baseball and a good beer. YUMMM...Beer. How I miss you so! My electronics include my Kindle which I've started reading again, slowly but its progress.
Or is clean living getting rid of the cobwebs in your head? Lupus put alot of spiders in my head and I think I'm ready to remove them. I want the negative thoughts gone and replaced with positive thoughts that will make my life happier. I think this can be done. Who's with me?
This is a work in progress. I will keep writing about this at a later date.
Now, I'm thinking what would clean living consist of? Would that consist of reducing the amount of material things I own? I could do that except I love electronics. Hal tells me that women are not into electronics. I never said I was your typical female. I love football, baseball and a good beer. YUMMM...Beer. How I miss you so! My electronics include my Kindle which I've started reading again, slowly but its progress.
Or is clean living getting rid of the cobwebs in your head? Lupus put alot of spiders in my head and I think I'm ready to remove them. I want the negative thoughts gone and replaced with positive thoughts that will make my life happier. I think this can be done. Who's with me?
This is a work in progress. I will keep writing about this at a later date.
Sunday, June 19, 2011
Happy Father's Day
I'm wishing all fathers a Happy Father's day.
I'm hoping that my dad is having a nice Sunday morning reading the paper from front to back. I hope the all the cigars he is smoking now are the best Cubanos and he is wearing his favorite Cubano shirt. It's how I remember him and when he was at his happiest.
I'm hoping that my dad is having a nice Sunday morning reading the paper from front to back. I hope the all the cigars he is smoking now are the best Cubanos and he is wearing his favorite Cubano shirt. It's how I remember him and when he was at his happiest.
Wednesday, June 15, 2011
Here's to you!
Short and Sweet!
I feel blessed to have my Lupie friends. Some of you have made me laugh so hard, I fell off my chair. Laughter is the best medicine. You have made me feel not alone with this @#%$ disease and I'm so glad and honored to know you.
God Bless you all!
Grant insight to those who bring healing, courage and faith to those who are sick, love and strength to us and to all who love them. God, let your spirit rest upon all who are ill and comfort them. May they and we soon know a time of complete healing, a healing of the body and a healing of the spirit and let us say: Amen.
I feel blessed to have my Lupie friends. Some of you have made me laugh so hard, I fell off my chair. Laughter is the best medicine. You have made me feel not alone with this @#%$ disease and I'm so glad and honored to know you.
God Bless you all!
Grant insight to those who bring healing, courage and faith to those who are sick, love and strength to us and to all who love them. God, let your spirit rest upon all who are ill and comfort them. May they and we soon know a time of complete healing, a healing of the body and a healing of the spirit and let us say: Amen.
Monday, June 13, 2011
Is it my naptime yet?
How is is possible to be so tired that your body hurts? I've been like this for days now.
I don't smoke and haven't smoked in 20 years. I eat better than most people in the USA. I can say that since I limit my sugar, carbs, calories, salt, and its a well balanced plan. I exercise more than I ever did now then when I was in my 20s and 30s. I probably could out run someone half of my age if I wasn't so tired.
In fact, I'm too tired to finish this blog. Could someone finish it for me? Perhaps in the comment section? Thank you for your help.
I don't smoke and haven't smoked in 20 years. I eat better than most people in the USA. I can say that since I limit my sugar, carbs, calories, salt, and its a well balanced plan. I exercise more than I ever did now then when I was in my 20s and 30s. I probably could out run someone half of my age if I wasn't so tired.
In fact, I'm too tired to finish this blog. Could someone finish it for me? Perhaps in the comment section? Thank you for your help.
Wednesday, June 8, 2011
Guilty or Not Guilty
Last night was my first of 5 self help classes for Lupus. I'm looking around the room thinking how did I get here? Do I belong to this group? Why do I feel guilty for sitting with these people? How can I complain about my problems when these people can't seem to get up in the morning without pain? Some Lupus patients have kidney failure, heart problems, and crippling pain. What gives me the right? I'm not sure. Is it all relative to the situation?
However, this is my blog, and I'm allowed to complain here without the guilt. Childlike, perhaps, but whatever.
I didn't take my medication last night and now I feel like crap, emotionally and physically. I'm having trouble with my vision this morning. I can see the damage which is quite annoying. I have ugly ulcers in my mouth (which is a new thing), my pissed off knee pain , all over body nerve pain, and the fatigue have greeted me this morning with a sunny hello. I also didn't sleep well so that makes everything worse. Oh, and one more fun filled thing to happen to me, I have rash on my back.
However, this is my blog, and I'm allowed to complain here without the guilt. Childlike, perhaps, but whatever.
I didn't take my medication last night and now I feel like crap, emotionally and physically. I'm having trouble with my vision this morning. I can see the damage which is quite annoying. I have ugly ulcers in my mouth (which is a new thing), my pissed off knee pain , all over body nerve pain, and the fatigue have greeted me this morning with a sunny hello. I also didn't sleep well so that makes everything worse. Oh, and one more fun filled thing to happen to me, I have rash on my back.
Sunday, June 5, 2011
Ignorance of Lupus. It happened again!
6/5/11 Added: I was eating a slice of carrot cake (not on my special diet but tasted sooo good) and asked one of my co-workers if he would like a piece. He said yes, and I told him jokingly he would get Lupus and then he changed his mind. He was afraid he would get my disease. For some reason, that actually hurt my feelings. Is this stupid to worry about what other people think of you?
**********************************************************************************
Since this is Lupus Awareness Month, I thought I would post several things people have said to me or about me...
Lupus is cancer, right?
She has a disease because she works out to much. It caused her to go partially blind...
Lupus is contagious.
In a meeting, I have to sit in a certain spot to see all the co-workers. This"person" said, wait, I'll make the print on the screen larger so you can see...THANKS for reminding me about my eyesight...and announcing it to the rest of the company. Thank you for reminding me I have Lupus on a daily basis.
I have a new wonderful statement that I almost threw a left hook: "You look great for someone who is sick"
**********************************************************************************
Since this is Lupus Awareness Month, I thought I would post several things people have said to me or about me...
Lupus is cancer, right?
She has a disease because she works out to much. It caused her to go partially blind...
Lupus is contagious.
In a meeting, I have to sit in a certain spot to see all the co-workers. This"person" said, wait, I'll make the print on the screen larger so you can see...THANKS for reminding me about my eyesight...and announcing it to the rest of the company. Thank you for reminding me I have Lupus on a daily basis.
I have a new wonderful statement that I almost threw a left hook: "You look great for someone who is sick"
Thursday, June 2, 2011
I need a good laugh.
The last time I went to Will's Eye Hospital back in March, I was nearly blind in my left eye. I wish I was exaggerating. I was a mess. I was taking the train into the city, and then returning back to the suburbs to have the IV of Solumedrol. It was one of the worst experiences in my life.
When I left Will's Eye, I asked the receptionist when do I need to come back for a follow up? She said that we will call you.
I waited a few days and didn't hear back from the doctor or the hospital. I called, the person who answered said, "Why would the doctor want to talk to you, she sees 50 patients a day." If you need your test results, you can call the 800 number. I told her the reason I'm calling is I'm going blind. I was devastated, hurt and felt abandoned by what I thought was one of the best eye hospitals in Pennsylvania. My general ophthalmologist also felt the abandonment. He told me he was going to help me but this is not his speciality. Between the Rheumatologist and my general ophthalmologist they worked out a game plan of drugs and checking my eye sight.
Recently, my general opholmologist asked me to make an appointment with the hospital again to check make sure he didn't miss anything. The anxiety started. I called, the woman again wanted to know why I was calling, who told me to call, and a thousand unnessary questions.
Today was my appointment and I told the doctor who immediately sent in the office manager. The doctor was so shocked and so was the manager. I told the office manager the receptionist violated my rights as a patient to see her doctor. They know who it was by the notes in the computer, and they are taking immediate action. I hope they fire her and not move her to a different building. Once that little red light of anger goes off in my head, you will need to run for the hills.
Dr. Hall @ Will's told me if any changes do happen at any point, to contact her or the office manager directly. Worst case, if I can't get through, I can go to Will's Eye emergency room where she will meet me. They have concerns of this repeating itself and attacking my right eye. I have to go back in 6 months for a re-check.
I lost a good portion of my eyesight in my left eye. I was told it was too late for my eye to repair itself.
To be honest, I'm feeling pretty crappy! I could use a good laugh right about now. Besides the eyes, I still have nerve pain and now my left hand won't stop shaking. I've said it before and I will keep saying it, LUPUS SUCKS.
When I left Will's Eye, I asked the receptionist when do I need to come back for a follow up? She said that we will call you.
I waited a few days and didn't hear back from the doctor or the hospital. I called, the person who answered said, "Why would the doctor want to talk to you, she sees 50 patients a day." If you need your test results, you can call the 800 number. I told her the reason I'm calling is I'm going blind. I was devastated, hurt and felt abandoned by what I thought was one of the best eye hospitals in Pennsylvania. My general ophthalmologist also felt the abandonment. He told me he was going to help me but this is not his speciality. Between the Rheumatologist and my general ophthalmologist they worked out a game plan of drugs and checking my eye sight.
Recently, my general opholmologist asked me to make an appointment with the hospital again to check make sure he didn't miss anything. The anxiety started. I called, the woman again wanted to know why I was calling, who told me to call, and a thousand unnessary questions.
Today was my appointment and I told the doctor who immediately sent in the office manager. The doctor was so shocked and so was the manager. I told the office manager the receptionist violated my rights as a patient to see her doctor. They know who it was by the notes in the computer, and they are taking immediate action. I hope they fire her and not move her to a different building. Once that little red light of anger goes off in my head, you will need to run for the hills.
Dr. Hall @ Will's told me if any changes do happen at any point, to contact her or the office manager directly. Worst case, if I can't get through, I can go to Will's Eye emergency room where she will meet me. They have concerns of this repeating itself and attacking my right eye. I have to go back in 6 months for a re-check.
I lost a good portion of my eyesight in my left eye. I was told it was too late for my eye to repair itself.
To be honest, I'm feeling pretty crappy! I could use a good laugh right about now. Besides the eyes, I still have nerve pain and now my left hand won't stop shaking. I've said it before and I will keep saying it, LUPUS SUCKS.
Debra0 comments
Sunday, July 17, 2011
Negative thoughts
The impact of negative thoughts can harm the soul. Just recently, I tried to help someone who was down and out. This woman didn't want to live and apparently didn't care about the people who loved her. Is this person being selfish? Didn't care about her children? She didn't think of her actions effecting other people in a negative way.
We should continue to laugh, love and be positive. Do positive things that will make you happy. It doesn't matter what makes you happy as long as it doesn't hurt anyone or anything else in the process.
I'm having a party on August 12th to educate all on Lupus. I'm calling it a party since I will have cake and everybody loves cake.
We should continue to laugh, love and be positive. Do positive things that will make you happy. It doesn't matter what makes you happy as long as it doesn't hurt anyone or anything else in the process.
I'm having a party on August 12th to educate all on Lupus. I'm calling it a party since I will have cake and everybody loves cake.
No one is in control of your happiness but you; therefore, you have the power to change anything about yourself or your life that you want to change.
- Barbara de Angelis
Thursday,
Learning to laugh.
Things for me are getting better. The damage from Lupus has stopped and hopefully will never return.
I've learned the power of laughter. It has the best healing and probably the cheapest cure.
Colin Stokol, M.D., a neurologist and psychiatrist at Cedars-Sinai Medical Center in Los Angeles, is a big fan of humor. “First, there is a feeling of belonging to a community when a patient finds humor with others,” he notes. “Second, there is a physical benefit to the action of deep laughter. When you laugh, you exercise your respiratory muscles, spine, upper body and face. And finally, there is a belief among medical professionals that laughter prompts the body to release endorphins, which are hormones that bring about a sense of well-being.”
Different people find different ways of getting those endorphins going, from playing practical jokes to watching an old “Three Stooges” episode. Wes Daniel of Midwest City, Okla., was diagnosed with lupus in 1991. When he was in the hospital receiving chemotherapy, a good chuckle was his front-line defense against the disease. Lupus Foundation
My way of laughter is the practical jokester. I love kidding around, and making bad puns. Life is so much easier when you laugh and laugh at yourself. The Three Stoogies is okay, but give me a Mel Brooks movie, and I can watch it over and over again. I will laugh my head off even though I know what is coming next.
My benefit is August 12th. I want all my friends to have a good time..eat some cake...learn about Lupus and maybe make a donation.
I've learned the power of laughter. It has the best healing and probably the cheapest cure.
Colin Stokol, M.D., a neurologist and psychiatrist at Cedars-Sinai Medical Center in Los Angeles, is a big fan of humor. “First, there is a feeling of belonging to a community when a patient finds humor with others,” he notes. “Second, there is a physical benefit to the action of deep laughter. When you laugh, you exercise your respiratory muscles, spine, upper body and face. And finally, there is a belief among medical professionals that laughter prompts the body to release endorphins, which are hormones that bring about a sense of well-being.”
Different people find different ways of getting those endorphins going, from playing practical jokes to watching an old “Three Stooges” episode. Wes Daniel of Midwest City, Okla., was diagnosed with lupus in 1991. When he was in the hospital receiving chemotherapy, a good chuckle was his front-line defense against the disease. Lupus Foundation
My way of laughter is the practical jokester. I love kidding around, and making bad puns. Life is so much easier when you laugh and laugh at yourself. The Three Stoogies is okay, but give me a Mel Brooks movie, and I can watch it over and over again. I will laugh my head off even though I know what is coming next.
My benefit is August 12th. I want all my friends to have a good time..eat some cake...learn about Lupus and maybe make a donation.
Debra0 comments
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