Yesterday I went on a rant- albeit poorly edited- but it sure felt good to blog again. I have a lot to say and I'll be bringing it as often as I can.
I love the idea of bloggers sharing their thoughts and getting comments. I read blogs but I haven't truly combined my love for writing with my interest in blogs.
I blogged before, but I wasn't very committed.
Now, the only thing that will interfere with my blogging is my health. Some days I am in too much pain to move (and think). I will still be writing a lot about my experiences having an incurable autoimmune disease (well, more than one) but I want to just write about whatever is on my mind.
I'm always open to suggestions. I might just post a poem or other personal writing I've done. This entry seems like a mission statement. It isn't really. It's me babbling again.
Thank you to those who are still supporting me.
peace & love,
sunee
Tuesday, January 17, 2012
Monday, January 16, 2012
Well, I said I was to write and I didn't. I'm more dedicated and I plan to blog at a few times a week. I enjoy blogging.
Having a serious illness I have noticed people say the most insensitive things. Sometimes it even feels intentional. "I wish I could stay home in bed all day!" Really? Because I wish I could work! It isn't a privilege to have an incurable disease with chronic severe pain. What do they think, that I'm partying all day, upstairs in my room, and that I'm loving going up and down the stairs?
Another good statement with some punch is, "I could never stay home all day. I need to work to ker
- Posted using BlogPress from my iPh
Having a serious illness I have noticed people say the most insensitive things. Sometimes it even feels intentional. "I wish I could stay home in bed all day!" Really? Because I wish I could work! It isn't a privilege to have an incurable disease with chronic severe pain. What do they think, that I'm partying all day, upstairs in my room, and that I'm loving going up and down the stairs?
Another good statement with some punch is, "I could never stay home all day. I need to work to ker
- Posted using BlogPress from my iPh
Location:home
Thursday, January 5, 2012
Although I'm not a big fan of ranting, I feel the need to today.
Now that I'm so ill I have empathy for ill people. I really understand. I don't know if people empathize or even understand me.
I have a very aggressive autoimmune disease, Sjogren's Syndrome, as well as two others and fibromyalgia. The daily pain, numbness, loss of balance and on and on keep me from doing much of anything. Not that I'm complaining. I've settled into my new life. I never stopped going before. In 11 years of teaching and directing I only missed five days of work. Two were for traveling to important family events.
After three years of being homebound while getting sicker and sicker, people still express to me (in a superior tone) how they could never stay home all day. They would be BOREDnand it would drive them crazy.
let me assure everyone that when you're as ill as I am you can't do anything. I don't get bored. I'm always trying to ease my severe pain, acid reflux, migraine's and the list goes on. I've had all of the fancy IV infusions and I still just get worse and worse. I hardly have time to be bored.
I have learned to enjoy the TV, my laptop, iPad and phone, and a decent personal library. I keep everything I'm using that day at arms length and put a few heating pads and a hot water bottle on the places that hurt the most at that time.
I like TV. I'm not ashamed to say it. I find shows with good writing and a few that are guilty pleasures. TV helps me get my mind off of the pain. It's simply this- I am too sick to work and I had no idea what it would be like to be this sick. If people want to think they're better than me because they go in to work with a cold or a sprain, let them. They wouldn't last a day with this kind of pain.
I promise to be positive next time =)
peace and love,
sunee
Now that I'm so ill I have empathy for ill people. I really understand. I don't know if people empathize or even understand me.
I have a very aggressive autoimmune disease, Sjogren's Syndrome, as well as two others and fibromyalgia. The daily pain, numbness, loss of balance and on and on keep me from doing much of anything. Not that I'm complaining. I've settled into my new life. I never stopped going before. In 11 years of teaching and directing I only missed five days of work. Two were for traveling to important family events.
After three years of being homebound while getting sicker and sicker, people still express to me (in a superior tone) how they could never stay home all day. They would be BOREDnand it would drive them crazy.
let me assure everyone that when you're as ill as I am you can't do anything. I don't get bored. I'm always trying to ease my severe pain, acid reflux, migraine's and the list goes on. I've had all of the fancy IV infusions and I still just get worse and worse. I hardly have time to be bored.
I have learned to enjoy the TV, my laptop, iPad and phone, and a decent personal library. I keep everything I'm using that day at arms length and put a few heating pads and a hot water bottle on the places that hurt the most at that time.
I like TV. I'm not ashamed to say it. I find shows with good writing and a few that are guilty pleasures. TV helps me get my mind off of the pain. It's simply this- I am too sick to work and I had no idea what it would be like to be this sick. If people want to think they're better than me because they go in to work with a cold or a sprain, let them. They wouldn't last a day with this kind of pain.
I promise to be positive next time =)
peace and love,
sunee
Thursday, December 29, 2011
Hello, hello! It's been so long I almost forgot about my blog! I believe I'm back. It is my goal to write several times a week, and, hopefully every day.
I have lived a very eye opening life as of late. I've become more and more ill, I've done a round of infusion drugs, I've been poked and prodded. I decided it's time that I documented all of this.
There was an episode of House about a woman who was a constant blogger and one of the illnesses she had was Sjogren's Syndrome. Sjogren's Syndrome is the aggressive autoimmune disease that I have. One of them, anyway.
This woman blogged about everything! Through the entire episode. I just saw that episode again and it helped me decide to blog again. Once I decided to start blogging again, I realized how much I've missed it.
There are many people suffering from this disease and I hope to share my experience and information that could be helpful. This isn't a medical blog. This is me- a 44-year-old woman with Sjogren's Syndrome, other autoimmune diseases, and fibromyalgia.
I look forward to sharing my journey.
peace and love,
sunee
I have lived a very eye opening life as of late. I've become more and more ill, I've done a round of infusion drugs, I've been poked and prodded. I decided it's time that I documented all of this.
There was an episode of House about a woman who was a constant blogger and one of the illnesses she had was Sjogren's Syndrome. Sjogren's Syndrome is the aggressive autoimmune disease that I have. One of them, anyway.
This woman blogged about everything! Through the entire episode. I just saw that episode again and it helped me decide to blog again. Once I decided to start blogging again, I realized how much I've missed it.
There are many people suffering from this disease and I hope to share my experience and information that could be helpful. This isn't a medical blog. This is me- a 44-year-old woman with Sjogren's Syndrome, other autoimmune diseases, and fibromyalgia.
I look forward to sharing my journey.
peace and love,
sunee
Friday, September 9, 2011
positive living
Every one of us believe we have a reason to be bummed out, sad, pissed off, feeling sorry for ourselves or we're carrying around a resentment.
These negative behaviors feel normal. We tend to clutch them tighter than we do a loved one. Just like stress, these behaviors can cause pain or other health problems. When we try to reach out we might feel bombarded with all of the positive sayings and expressions that might be said to me.
Although we all seem to feel one or more of the negative thinking, it's even more harmful for anyone with a serious health issue.
As someone suffering terribly from the autoimmune disease Sjogren's Syndrome (SJS)and Fibromyalgia, I have found myself living in all negative feelings.All that did was cause me more and more pain. I'm sure it is harder or worse for those who have more serious and immediate health issues. But I wish them positive thinking, gratitude and love.
Reaching out for help is a great step to rid ourselves of the negative ways we think. Reaching out to friends, a professional such as a counselor, or a support group. If we feel we need serious help, counseling may be the way to go. Support groups, for me, remind me that life is good and being grateful takes the negative edge off of us.
When we reach out we'll often be given positive affirmations to recite daily. And these seem corny. People say, "How are these simple expressions going to help me?"
Positive thinking and living starts with those expressions, and if we really examine the saying it may just start to make sense. If we let it make sense, it may be worth incorporating into our daily lives.
"Keep it simple" is an expression I've heard a lot of complaining or even making fun of it or even show anger toward it. "How can keeping it simple keep the landlord from showing up when I don't the money."
The idea behind any saying that promotes positive thinking is that we look at what is pissing us off or why we're carrying a resentment. They're designed, in my opinion, is to get us to look at our problem and see our part and then letting it go. We should remember all of the people and things we love and appreciate and be thankful.
This isn't by any means the answers to our problems, but it may get us to look at what is riling us up and to find a gentle way to handle it. Some of us may need counseling (if this is a common way of life).
Reach out to a friend and confide in him/her until you feel less of the negative behaviors. Or, join a support group. There is one for just about anything. You may find one that is similar to your needs and it could be worth checking out.
We can also start everyday saying things like I won't hold this resentment against so and so because it is keeping me from being happy. Or, I will feel gratitude rather than feeling sorry for myself or be bummed out.
I hope all of us reach out. If you need to find a support group try www.meetup.com and find people who feel the same way.
Reaching out is good for both parties. So don't be afraid to say "I really need to talk. Are you free soon?" The results will amaze you. Positivity starts with us.
peace & love,
sunee
These negative behaviors feel normal. We tend to clutch them tighter than we do a loved one. Just like stress, these behaviors can cause pain or other health problems. When we try to reach out we might feel bombarded with all of the positive sayings and expressions that might be said to me.
Although we all seem to feel one or more of the negative thinking, it's even more harmful for anyone with a serious health issue.
As someone suffering terribly from the autoimmune disease Sjogren's Syndrome (SJS)and Fibromyalgia, I have found myself living in all negative feelings.All that did was cause me more and more pain. I'm sure it is harder or worse for those who have more serious and immediate health issues. But I wish them positive thinking, gratitude and love.
Reaching out for help is a great step to rid ourselves of the negative ways we think. Reaching out to friends, a professional such as a counselor, or a support group. If we feel we need serious help, counseling may be the way to go. Support groups, for me, remind me that life is good and being grateful takes the negative edge off of us.
When we reach out we'll often be given positive affirmations to recite daily. And these seem corny. People say, "How are these simple expressions going to help me?"
Positive thinking and living starts with those expressions, and if we really examine the saying it may just start to make sense. If we let it make sense, it may be worth incorporating into our daily lives.
"Keep it simple" is an expression I've heard a lot of complaining or even making fun of it or even show anger toward it. "How can keeping it simple keep the landlord from showing up when I don't the money."
The idea behind any saying that promotes positive thinking is that we look at what is pissing us off or why we're carrying a resentment. They're designed, in my opinion, is to get us to look at our problem and see our part and then letting it go. We should remember all of the people and things we love and appreciate and be thankful.
This isn't by any means the answers to our problems, but it may get us to look at what is riling us up and to find a gentle way to handle it. Some of us may need counseling (if this is a common way of life).
Reach out to a friend and confide in him/her until you feel less of the negative behaviors. Or, join a support group. There is one for just about anything. You may find one that is similar to your needs and it could be worth checking out.
We can also start everyday saying things like I won't hold this resentment against so and so because it is keeping me from being happy. Or, I will feel gratitude rather than feeling sorry for myself or be bummed out.
I hope all of us reach out. If you need to find a support group try www.meetup.com and find people who feel the same way.
Reaching out is good for both parties. So don't be afraid to say "I really need to talk. Are you free soon?" The results will amaze you. Positivity starts with us.
peace & love,
sunee
Monday, September 5, 2011
Support
We all need support now and then. Life has a lot of bumpy roads and crazy turns. We need people to turn to.
For those of us that are coping with health issues I believe it is very important that we have group to meet with and talk about life, learn from those who have had their condition longer. By conditions I was referring to Sjogren's Syndrome (sjs), Fibromyalgia, Lupus, Rheumatoid Arthritis (ra) and whoever has a health condition.
If you do not have health issues you might be having an emotional problem and need support. Or if you're in the middle of someone's problem there are many established groups to help you. But you might prefer a smaller group.
If you have heath issues you might feel isolated. On top of that you might have chronic pain (I've always been open with the fact that I have severe pain daily). There are so many reasons we need to spend a little time with people like us. They'll understand everything you're dealing with.
Support groups help you focus on living better, yet in the group you can talk about what's on your mind. Especially if you feel your family has heard enough about your pain and other problems. Also, you might have someone who has had a condition for much longer than you, or I, have and will share wisdom and tricks and all we need to get through the day.
How do I find these wonderful support groups? Flyers at your Doctors offices, at any place like the gym or library etcetera.
If you get on your computer and go to www.meetup.com you can search for groups with your problem or condition within certain miles.
Get support. Be with people who understand and care. Learn how others coped and how they felt when things are totally off kilter and the it's out of control and you hurt (with or without a condition). It's okay to reach out. In fact it's probably better than medication.
I hope you reach out. You'll grow from this and you'll feel less isolated. Maybe you'll feel happier, like I have.
peace and love,
sunee
For those of us that are coping with health issues I believe it is very important that we have group to meet with and talk about life, learn from those who have had their condition longer. By conditions I was referring to Sjogren's Syndrome (sjs), Fibromyalgia, Lupus, Rheumatoid Arthritis (ra) and whoever has a health condition.
If you do not have health issues you might be having an emotional problem and need support. Or if you're in the middle of someone's problem there are many established groups to help you. But you might prefer a smaller group.
If you have heath issues you might feel isolated. On top of that you might have chronic pain (I've always been open with the fact that I have severe pain daily). There are so many reasons we need to spend a little time with people like us. They'll understand everything you're dealing with.
Support groups help you focus on living better, yet in the group you can talk about what's on your mind. Especially if you feel your family has heard enough about your pain and other problems. Also, you might have someone who has had a condition for much longer than you, or I, have and will share wisdom and tricks and all we need to get through the day.
How do I find these wonderful support groups? Flyers at your Doctors offices, at any place like the gym or library etcetera.
If you get on your computer and go to www.meetup.com you can search for groups with your problem or condition within certain miles.
Get support. Be with people who understand and care. Learn how others coped and how they felt when things are totally off kilter and the it's out of control and you hurt (with or without a condition). It's okay to reach out. In fact it's probably better than medication.
I hope you reach out. You'll grow from this and you'll feel less isolated. Maybe you'll feel happier, like I have.
peace and love,
sunee
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