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
Thursday, December 29, 2011
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
Saturday, September 3, 2011
Painy daze
I have had many days that I really, really, wanted to go somewhere, go out with my husband, go for lunch and shopping with my daughter, hang out with my son or see a friend.
The reason, as we all know, is pain. On painy days we may just have to say no. Pain that is severe and often debilitating takes up our day. Our job or activity that day is to take care of ourselves.
Many of us stay in the bed, let people bring us snacks and accept help that is offered. Of course if pain strikes while you're alone it's nice to nap and watch whatever we want on TV all while enjoying quiet.
But let's be honest. Many of us do chores, help family members with what they need, squeeze in a visit with a friend, and, if we're employed it's off to work we go. (Because we're stronger than the pain.)
Painy days are the hardest days. Your hot spots throb, new places hurt, in fact, sometimes even your whole entire body.
When it gets that bad you need to pamper yourself. Painy days are about slowing down. If you're really upset that you're not at work, get comfy on the bed and do a small amount of work on your laptop. Just a little.
Painy days are the worst kind of days (though we can still find something to be grateful for) but we should be listening to our bodies everyday and we never over do it.
As for changing plans with people just tell him/her it's a paint day and you can't go outside.
peace & love,
sunee
The reason, as we all know, is pain. On painy days we may just have to say no. Pain that is severe and often debilitating takes up our day. Our job or activity that day is to take care of ourselves.
Many of us stay in the bed, let people bring us snacks and accept help that is offered. Of course if pain strikes while you're alone it's nice to nap and watch whatever we want on TV all while enjoying quiet.
But let's be honest. Many of us do chores, help family members with what they need, squeeze in a visit with a friend, and, if we're employed it's off to work we go. (Because we're stronger than the pain.)
Painy days are the hardest days. Your hot spots throb, new places hurt, in fact, sometimes even your whole entire body.
When it gets that bad you need to pamper yourself. Painy days are about slowing down. If you're really upset that you're not at work, get comfy on the bed and do a small amount of work on your laptop. Just a little.
Painy days are the worst kind of days (though we can still find something to be grateful for) but we should be listening to our bodies everyday and we never over do it.
As for changing plans with people just tell him/her it's a paint day and you can't go outside.
peace & love,
sunee
Friday, September 2, 2011
Polite responses
Whenever I (and probably you, too) run into someone or I'm in a group setting people tend to say, "How are you doing?" or, "How are you?" and so on. It's a normal and friendly greeting. So, how do those of us who have health issues respond without making the person sorry they asked in the first place?
There are several variables, of course. There might be someone who knows me very well asking. There might be someone my husband or other family members knows well asking, so they probably know I have health issues. There are people I know fairly well, so s/he might be genuinely asking. And, of course, there are those people I barely know asking.
To my good friends I tell the whole truth- details and sometimes a little venting. I need to talk about it and they don't expect a simple response. (Which is great because it gives my family a break from listening.)
To the people I hardly know I simply say, "I'm hanging in there," and then ask about how they are. This can be a tough one if you know everyone in your community because s/he probably knows you're sick with something. If they prod I say, "I'm counting my blessings," and move on. Literally. I say it was nice to see you and gracefully make my exit.
To the people I only know through family members I give him/her an update without leaving them depressed and feeling sorry for me. It's easy to tell when enough is enough by his/her body language. Too much info makes some people uncomfortable with a lack of what to reply.
If I'm seeing someone I know well but haven't seen in a while I give a gentle version of the truth. If h/she wants more details you'll know. They'll ask questions and add what they've heard etcetera.
I don't want to be downer to talk to. It was never part of my personality before and I'm not going to let be now.
Simply paying attention to his/her body language will not only stop you from being a downer, but also someone who knows when we're getting on the "too much information" highway.
Being polite can be difficult at times, but it makes me feel good. And who doesn't want that?
peace & love,
sunee
- Posted using BlogPress from my iPad
There are several variables, of course. There might be someone who knows me very well asking. There might be someone my husband or other family members knows well asking, so they probably know I have health issues. There are people I know fairly well, so s/he might be genuinely asking. And, of course, there are those people I barely know asking.
To my good friends I tell the whole truth- details and sometimes a little venting. I need to talk about it and they don't expect a simple response. (Which is great because it gives my family a break from listening.)
To the people I hardly know I simply say, "I'm hanging in there," and then ask about how they are. This can be a tough one if you know everyone in your community because s/he probably knows you're sick with something. If they prod I say, "I'm counting my blessings," and move on. Literally. I say it was nice to see you and gracefully make my exit.
To the people I only know through family members I give him/her an update without leaving them depressed and feeling sorry for me. It's easy to tell when enough is enough by his/her body language. Too much info makes some people uncomfortable with a lack of what to reply.
If I'm seeing someone I know well but haven't seen in a while I give a gentle version of the truth. If h/she wants more details you'll know. They'll ask questions and add what they've heard etcetera.
I don't want to be downer to talk to. It was never part of my personality before and I'm not going to let be now.
Simply paying attention to his/her body language will not only stop you from being a downer, but also someone who knows when we're getting on the "too much information" highway.
Being polite can be difficult at times, but it makes me feel good. And who doesn't want that?
peace & love,
sunee
- Posted using BlogPress from my iPad
Thursday, September 1, 2011
Scary side effects
Guilty- I read all of the side effects for every medication I'm prescribed. I know I say not to. It will just make you scared and you may not take a prescription that might help you.
I even go online and read everything, and I mean everything, about it.Will it cause heart problems? Will it make me have seizures? Could I have serious medical problems if I take it for a long period of time? Does it make me loss my hair? Is it okay to take it with the other medications I'm on?
My psychiatrist told me not to do that. The most I should do is read the ways it will help me. In other words, find out how it works and trust the doctor who prescribed it. Besides, the pharmacy will catch any negative drug interactions.
My psychiatrist also told me that the people who do the medical trials may not even have our condition. Not only that, but any headache or nausea etcetera that they're feeling that day, aside from the medication, may effect their responses to how the medication makes them feel.
I've cut down on searching the side effects. I still inform myself on the medications but I don't spend hours online finding all the sometimes ugly details.
It's very liberating to trust the experts and not look for what possibly (like one in five million) might happen. There are just too many variables.
Being sick is hard enough. I don't need a bunch of negative information to add to it. And I hope you don't either.
Just the facts, please.
peace & love,
sunee
- Posted using BlogPress from my iPad
I even go online and read everything, and I mean everything, about it.Will it cause heart problems? Will it make me have seizures? Could I have serious medical problems if I take it for a long period of time? Does it make me loss my hair? Is it okay to take it with the other medications I'm on?
My psychiatrist told me not to do that. The most I should do is read the ways it will help me. In other words, find out how it works and trust the doctor who prescribed it. Besides, the pharmacy will catch any negative drug interactions.
My psychiatrist also told me that the people who do the medical trials may not even have our condition. Not only that, but any headache or nausea etcetera that they're feeling that day, aside from the medication, may effect their responses to how the medication makes them feel.
I've cut down on searching the side effects. I still inform myself on the medications but I don't spend hours online finding all the sometimes ugly details.
It's very liberating to trust the experts and not look for what possibly (like one in five million) might happen. There are just too many variables.
Being sick is hard enough. I don't need a bunch of negative information to add to it. And I hope you don't either.
Just the facts, please.
peace & love,
sunee
- Posted using BlogPress from my iPad
Wednesday, August 31, 2011
Doing only what you can
I know I've had this topic several times before, but I'm a slow learner so this is for me as much as anyone else.
There are days, sometimes several days in a row, when we just don't feel up to doing something that makes us happy when we do it.
It's okay to have to say no to seeing a friend or going to dinner. Even an event we said we would be at but at the time your arms hurt terribly, or your legs, or, worse, both.
Some people are understanding and sympathetic. They even care about how we are doing.
Some people believe we couldn't possibly have terrible pain "all of the time." I am learning not to accept what they say. In my mind I acknowledge what they said and I look for some good in it. Can't find the good? Move on. We have enough issues with people not believing us or that we are weak.
If I made a point here it's that we need to listen to our bodies. We need to be able say no and we need to change the negative comments to a positive thought.
We suffer a lot and we need to keep our life as absolutely positive as we can.
Say affirmations. Be good to yourself. And, be okay saying no.
peace & love,
sunee
Friday, August 26, 2011
understanding
I read a comment and it was exactly what I have been thinking about all day- trying to get people who don't suffer from chronic pain to understand.
My thoughts on the subject were that it's true. How can they understand? Before I got sick I thought headaches were the worst pain imaginable (until I broke my nose).
Those of us with both an autoimmune disease and Fibromyalgia suffer from pain all over our bodies. Our joints hurt, we get numbness, we have pain in places we never thought would hurt.
I know that many people think we have a low pain threshold and we're over reacting. It's all in our heads. But we know how we feel.
I try not to associate with people who don't at least try to understand. We have enough problems without dealing with people who refuse to accept that we are suffering.
It may limit our social circle, however I feel that I'm going through enough crap that I'm better off without them.
We need to surround ourselves with people who care about how we feel- even if they don't fully understand how and why we feel how we do.
In order to stay positive, a very important part of our self-care, being around people who care about us. I vent to one friend who never questions me. She offers support and an open ear. I know I could count on her in an emergency.
If you have someone who you can talk to outside of your family that helps tremendously. Family members see it every single day. They live through the worst of it with you.
Support groups are good. They understand everything you're living through because they live through it too. Remember that they may be at different stages or experience the disease or Fibromyalgia differently, yet you'll be connected by virtue of your condition.
If there aren't support groups in your area, you can always start one. Meetup is a great way to start a group (www.meetup.com) and it will walk you through it. Or you can put up flyers at your doctor's office. Either way, be patient. People will eventually find your group (if they don't right a way.)
Location might be a little bit of a challenge. Try your local coffee houses and places like that. Many cater to groups from book clubs to people who meet for a number of reasons.
My point is that most people don't get and probably never will. They don't live with a host of physical problems that we don't even understand sometimes. If they can't be sympathetic, move on.We don't need that negativity in our lives.
I hope you all have someone to vent to. Vent to me in the comments. I believe all the people that think we're crazy etcetera keep us from living our lives to our full potential.
My hope for you is a life full of loving, understanding people.
peace & love,
sunee
My thoughts on the subject were that it's true. How can they understand? Before I got sick I thought headaches were the worst pain imaginable (until I broke my nose).
Those of us with both an autoimmune disease and Fibromyalgia suffer from pain all over our bodies. Our joints hurt, we get numbness, we have pain in places we never thought would hurt.
I know that many people think we have a low pain threshold and we're over reacting. It's all in our heads. But we know how we feel.
I try not to associate with people who don't at least try to understand. We have enough problems without dealing with people who refuse to accept that we are suffering.
It may limit our social circle, however I feel that I'm going through enough crap that I'm better off without them.
We need to surround ourselves with people who care about how we feel- even if they don't fully understand how and why we feel how we do.
In order to stay positive, a very important part of our self-care, being around people who care about us. I vent to one friend who never questions me. She offers support and an open ear. I know I could count on her in an emergency.
If you have someone who you can talk to outside of your family that helps tremendously. Family members see it every single day. They live through the worst of it with you.
Support groups are good. They understand everything you're living through because they live through it too. Remember that they may be at different stages or experience the disease or Fibromyalgia differently, yet you'll be connected by virtue of your condition.
If there aren't support groups in your area, you can always start one. Meetup is a great way to start a group (www.meetup.com) and it will walk you through it. Or you can put up flyers at your doctor's office. Either way, be patient. People will eventually find your group (if they don't right a way.)
Location might be a little bit of a challenge. Try your local coffee houses and places like that. Many cater to groups from book clubs to people who meet for a number of reasons.
My point is that most people don't get and probably never will. They don't live with a host of physical problems that we don't even understand sometimes. If they can't be sympathetic, move on.We don't need that negativity in our lives.
I hope you all have someone to vent to. Vent to me in the comments. I believe all the people that think we're crazy etcetera keep us from living our lives to our full potential.
My hope for you is a life full of loving, understanding people.
peace & love,
sunee
Wednesday, August 24, 2011
Reiki
I have three Reiki sessions so far and I am sincerely recommending it. Although, I must admit it may not be for everyone. You have to be willing and open.
Many of us with chronic pain carry a lot of emotional baggage. I have found that Reiki helps release that baggage to help not only left pain, but to feel better, more love, for ourselves.
Reiki may not cure my autoimmune disease or take all of pain away, but it will definitely help me be happier with who and what I am.
Reiki has already helped with depression and feelings of worthlessness. I feel like writing again (most days). I feel creative and my spirituality has been reignited.
I suffered terribly from feelings of worthlessness and depression. But every session I feel myself coming back out of the disease.
I was a perky, energetic (okay, hyper) woman until Sjogren's and Fibro really hit me at 43. I was unstoppable. then out all ended.
Now I feel there are different creative paths for me and each session builds my confidence more.
It is a very positive and spiritual experience.
I hope you all find something that brings back your vitality. (Not that I am Miss Super Vital Ray of Sunshine everyday, but I'm working on it.)
peace & love,
sunee
Many of us with chronic pain carry a lot of emotional baggage. I have found that Reiki helps release that baggage to help not only left pain, but to feel better, more love, for ourselves.
Reiki may not cure my autoimmune disease or take all of pain away, but it will definitely help me be happier with who and what I am.
Reiki has already helped with depression and feelings of worthlessness. I feel like writing again (most days). I feel creative and my spirituality has been reignited.
I suffered terribly from feelings of worthlessness and depression. But every session I feel myself coming back out of the disease.
I was a perky, energetic (okay, hyper) woman until Sjogren's and Fibro really hit me at 43. I was unstoppable. then out all ended.
Now I feel there are different creative paths for me and each session builds my confidence more.
It is a very positive and spiritual experience.
I hope you all find something that brings back your vitality. (Not that I am Miss Super Vital Ray of Sunshine everyday, but I'm working on it.)
peace & love,
sunee
Tuesday, August 23, 2011
family problems are a pain
Those of us with chronic pain know that when there is stress it's difficult to control our pain. (It's difficult most of the time anyway.)
When there are major family problems I tend to get very stressed and therefore my pain increases exponentially.
I don't know about others but I tend to take it all on and have trouble letting it go and letting certain things just work themselves out.
My advise is that we need to step back before jumping in headfirst. We can ease our discomfort by not stressing out before we even deal with anything.
Then it's all about letting go. We have to let outcomes be what they may. We also have to take care of ourselves or we can't deal with much of anything.
I only share this because I did it wrong.
peace and love,
sunee
When there are major family problems I tend to get very stressed and therefore my pain increases exponentially.
I don't know about others but I tend to take it all on and have trouble letting it go and letting certain things just work themselves out.
My advise is that we need to step back before jumping in headfirst. We can ease our discomfort by not stressing out before we even deal with anything.
Then it's all about letting go. We have to let outcomes be what they may. We also have to take care of ourselves or we can't deal with much of anything.
I only share this because I did it wrong.
peace and love,
sunee
Saturday, August 20, 2011
letting go
Letting go has got to be one of the hardest things in the world. However, if we're to be happy, letting go is the most important thing we have to do.
Being ill we often feel sorry for being sick, sorry for the sadness it causes our loved ones and sorry for the inconveniences it causes everyone.
We can't take that on. We're already sick. If we get scared or overwhelmed by it all we need to acknowledge it then throw it away (unless it is something important to discuss). That may mean writing about it, talking to a spouse, a friend a loved one.
Letting it build up will keep us down. Worse, it will make our family sad to see us like that and then we will all be depressed.
So, I'm letting it all go. The fear of how my family feels. The fear of the future. The fear of the pain. The fear of if I'm living up to expectations.
Let's all let go and be free.
peace & love,
sunee
Being ill we often feel sorry for being sick, sorry for the sadness it causes our loved ones and sorry for the inconveniences it causes everyone.
We can't take that on. We're already sick. If we get scared or overwhelmed by it all we need to acknowledge it then throw it away (unless it is something important to discuss). That may mean writing about it, talking to a spouse, a friend a loved one.
Letting it build up will keep us down. Worse, it will make our family sad to see us like that and then we will all be depressed.
So, I'm letting it all go. The fear of how my family feels. The fear of the future. The fear of the pain. The fear of if I'm living up to expectations.
Let's all let go and be free.
peace & love,
sunee
Friday, August 19, 2011
fall out
All I have to write about tonight is that having Sjogren's Syndrome and Fibromyalgia causes a lot of fall out.
It tears families apart. No one knows what to do. It scares and worries the children. You feel all your aches and symptoms and then maybe some sadness for putting them through this.
How are we to act around the children? Our spouses? How do bring back normalcy to our lives?
These are things that each family has to figure out due to their own dynamic, but it is the hardest thing I've had to deal with so far.
I wish I could take the fear and worry from my kids. That's what would make me feel better.
peace & love
sunee
It tears families apart. No one knows what to do. It scares and worries the children. You feel all your aches and symptoms and then maybe some sadness for putting them through this.
How are we to act around the children? Our spouses? How do bring back normalcy to our lives?
These are things that each family has to figure out due to their own dynamic, but it is the hardest thing I've had to deal with so far.
I wish I could take the fear and worry from my kids. That's what would make me feel better.
peace & love
sunee
Thursday, August 18, 2011
just thinking about being myself
I am returning to writing about my experiences and my thoughts.
I'll share information, but I feel uncomfortable delving into doctor realm. I'll list some books at the end.
So, I've been suffering terribly. The Fibro, the Sjogren's- all the pain and problems have increased dramatically. I'm on a ton of medication, so my stomach hurts a lot.
I have rashes. They're not just from Lupus. Some are just bumpy with no redness. My other "rash" is what I call toe rot. My toe nails look like they've got the worst case of fungus you've ever seen but it isn't a fungus. And, now I have a finger nail with it. Nothing clears it. And my hair is thinning so much. I used to have full curly hair and now it is so thin many of my barrettes are way too big. I won't go on. It'll bum me out.
Needless to say, I understand what you're all going through.
I enjoy looking at what is positive in our lives, whether we work or not. I like writing about the little things that make me feel better, like herbal tea and a good book or drinking it on the patio.
I was listening to The Beatles and I realized it's true. All we need is LOVE. We need to love ourselves even though we aren't the person we though we would be. It's tough business.
Before I became "ill" I ran a huge Drama Department. I directed three plays a year and musicals with casts up to 65 students. We had the best time. My children participated. I wrote plays and we produced them.
After I left that job because I was in so much pain I went into a depression. Then I tried working at the continuation high school. I loved it like I loved Drama, but after six months I was in terrible shape.
Yes, I lost who I thought I was, but if I love myself the way I am now it just makes it easier. Especially my family. I feel so bad when all I talk about what's bad. I am too blessed to be a poor me.
We all feel that way sometimes, but there are people who will listen, let us vent. There are also support groups on Meetup. I'm in one in the South Bay.
Here are a few titles of books that provide better medical information than an ex-drama teacher/writer:
1. The Sjogren's Syndrome Survival Guide by Teri P. Rumph, PH.D. & Katherine Morland Hammit.
2. The Sjogren's Syndrome Handbook edited by Daniel J. Wallace M.D.
3.A Body Out of Balance by Ruth Fremes,M.A., and Nancy Carteron M.D. FACR
4. Making Sense of Fibromyalgia by Daniel J. Wallace M.D.,and Janice Brock Wallace
5. (my favorite, most helpful book) The Complete Idiot's Guide to Fibromyalgia by Lynne Matallana and Laurence A. Bradley, Ph.D
I hope that one of these books help. I know of several more. Mostly I hope you don't feel alone and you feel love.
peace & love,
sunee
Tuesday, August 16, 2011
More details part 1
I am going to write some information about Sjogren's Syndrome and a little about fibromyalgia. This information is based on my experience and the millions of questions I ask my rheumatologist (because I bring a list each visit).
Let's begin with Raynaud's Phenomenon. Have you looked at your feet and they're purple? Or white? Maybe your legs are blotchy? Generally it is the constriction of your blood vessels- and if they're blue it's the pooling of blood in the veins. sometimes it shows signs of vasculitis, but your rheumatologist will run tests if it looks worrisome.
You (and I) can have fevers, fatigue, reflux, achiness, muscle weakness, numbness and tingling, itchy skin (watch those rashes!), cracked skin, hives, mouth sores, Depression, hearing loss and nasal problems. (Just to name some problems.) it's mandatory to keep your doctor informed of all changes in your body. Also remember to keep skin hydrated and to mention any changes, (rashes etc) to your rheumatologist.
Pain is probably the worst problem I have had. My wrists, ankles, knees and elbows throb and ache in use or not. Muscle weakness is when you feel like jelly when you walk as far as you used to. Going up and down my stairs my legs don't feel strong enough to make it. I was told to exercise as much as I could each day. Many days, because I am in severe pain, I just walk around my house, taking the stairs a few times. You might be able to do a little more. I plan to start gentle yoga next week.
Pain is the monster of both conditions as far as I'm concerned. Well, I may feel differently when my mouth is too dry to eat and an eye lash made me feel that my eye has been stabbed. (If that happens a warm compress helps and Systane makes a gel that should help, and can be used every night.) That pain from the eye lash is often sharp and will stay around awhile.
Pain comes in many forms and levels. I try to journal my pain. I to use the 1-10 system the hospital does as well as describing the pain. Is it dull, sharp, stabbing, moving, burning, aching? Most pain related to fibro and Sjogren's responds well to heat. I am a huge fan of heating pads. I have several. If a warm hot tub or pool is available, take a short dip (but remember that hot water dries out skin), also for a lot of people a shower works. No magic product on the market helps. A rub down with some thick cream relaxes you, moisturizes your skin and takes the edge off the pain.
Relaxation is so crucial to lowering our pain levels- no matter what type of pain. You may have prescriptions for pain. If it hurts bad enough that you can't move easily, is making you have anxiety or just throbbing through your body, take the medication in the dose prescribed. Then try to relax with music or whatever works for you. Don't let it get to an excessive level because then the medication may not work.
Mouth sores make it harder to eat than just a dry mouth. Ask your dentist or rheumatologist how they want you to handle these. I get thrush, or yeast infections (yuck) in my mouth often and I have tablets to suck on and I stick to a soft diet. But I also get sores that are like chewed up skin. I stick to a liquid diet at those times. Ask your doctor or dentist what to do of you get mouth sores or your mouth turns white. What I do may not be how they would handle it.
By the way, I was writing about eye drops and blurry vision yesterday. Part of the blurriness is from certain medications, especially DMARDs. If you also have fibro than you should know that Lyrica can cause blurred vision. I have terrible vision anyway, since I take those medications I don't drive at night and as needed during the day.
Nasal problems can occur as well. I get the dry sinus infections that hurt terribly. You might get other problems, including bloody noses. It is recommended that all Sjogren's patient's use humidifiers throughout their homes to help keep moisture flowing. Try to keep them in the rooms you're in the most.
Many of us with fibro also have odd numbness and tingling in our hands and feet. Please tell your rheumatologist about that. It can be a variety of things. It's annoying, scary, uncomfortable and kind of strange, but so are these conditions. I get numbness and cramps in my feet and tingling in my hands. It generally happens when my wrists are screaming in pain and my arms have a moving burning pain. Pay attention to when (if) it happens to you. Write it down and see if it's the same every time. These are things to tell your rheumatologist.
I have had MRIs, CT Scans, been to the neurologist, so I understand. It's scary and confusing, and you often don't get the results quickly. These have to be done because they may provide important information. Anything that can help us is a good thing.
Falling into depression from all the doctors, medications, your role in the family and how much pain you're in is common, but still serious. I see a psychiatrist, some people see counselors. Support groups help. But I think it's very important to tell either your primary care doctor or rheumatologist if it is causing you to feel sadness or anxiety most of the time. Don't let your illness define you. And get help. I did.
I just wrote about a few things that were not as basic. I'm open to suggestions. I'm not a doctor, just someone suffering from Sjogren's and Fibromyalgia (who happens to be neurotic with adult ADHD).
I hope something I wrote helps.
peace & love,
sunee
- Posted using BlogPress from my iPad
Let's begin with Raynaud's Phenomenon. Have you looked at your feet and they're purple? Or white? Maybe your legs are blotchy? Generally it is the constriction of your blood vessels- and if they're blue it's the pooling of blood in the veins. sometimes it shows signs of vasculitis, but your rheumatologist will run tests if it looks worrisome.
You (and I) can have fevers, fatigue, reflux, achiness, muscle weakness, numbness and tingling, itchy skin (watch those rashes!), cracked skin, hives, mouth sores, Depression, hearing loss and nasal problems. (Just to name some problems.) it's mandatory to keep your doctor informed of all changes in your body. Also remember to keep skin hydrated and to mention any changes, (rashes etc) to your rheumatologist.
Pain is probably the worst problem I have had. My wrists, ankles, knees and elbows throb and ache in use or not. Muscle weakness is when you feel like jelly when you walk as far as you used to. Going up and down my stairs my legs don't feel strong enough to make it. I was told to exercise as much as I could each day. Many days, because I am in severe pain, I just walk around my house, taking the stairs a few times. You might be able to do a little more. I plan to start gentle yoga next week.
Pain is the monster of both conditions as far as I'm concerned. Well, I may feel differently when my mouth is too dry to eat and an eye lash made me feel that my eye has been stabbed. (If that happens a warm compress helps and Systane makes a gel that should help, and can be used every night.) That pain from the eye lash is often sharp and will stay around awhile.
Pain comes in many forms and levels. I try to journal my pain. I to use the 1-10 system the hospital does as well as describing the pain. Is it dull, sharp, stabbing, moving, burning, aching? Most pain related to fibro and Sjogren's responds well to heat. I am a huge fan of heating pads. I have several. If a warm hot tub or pool is available, take a short dip (but remember that hot water dries out skin), also for a lot of people a shower works. No magic product on the market helps. A rub down with some thick cream relaxes you, moisturizes your skin and takes the edge off the pain.
Relaxation is so crucial to lowering our pain levels- no matter what type of pain. You may have prescriptions for pain. If it hurts bad enough that you can't move easily, is making you have anxiety or just throbbing through your body, take the medication in the dose prescribed. Then try to relax with music or whatever works for you. Don't let it get to an excessive level because then the medication may not work.
Mouth sores make it harder to eat than just a dry mouth. Ask your dentist or rheumatologist how they want you to handle these. I get thrush, or yeast infections (yuck) in my mouth often and I have tablets to suck on and I stick to a soft diet. But I also get sores that are like chewed up skin. I stick to a liquid diet at those times. Ask your doctor or dentist what to do of you get mouth sores or your mouth turns white. What I do may not be how they would handle it.
By the way, I was writing about eye drops and blurry vision yesterday. Part of the blurriness is from certain medications, especially DMARDs. If you also have fibro than you should know that Lyrica can cause blurred vision. I have terrible vision anyway, since I take those medications I don't drive at night and as needed during the day.
Nasal problems can occur as well. I get the dry sinus infections that hurt terribly. You might get other problems, including bloody noses. It is recommended that all Sjogren's patient's use humidifiers throughout their homes to help keep moisture flowing. Try to keep them in the rooms you're in the most.
Many of us with fibro also have odd numbness and tingling in our hands and feet. Please tell your rheumatologist about that. It can be a variety of things. It's annoying, scary, uncomfortable and kind of strange, but so are these conditions. I get numbness and cramps in my feet and tingling in my hands. It generally happens when my wrists are screaming in pain and my arms have a moving burning pain. Pay attention to when (if) it happens to you. Write it down and see if it's the same every time. These are things to tell your rheumatologist.
I have had MRIs, CT Scans, been to the neurologist, so I understand. It's scary and confusing, and you often don't get the results quickly. These have to be done because they may provide important information. Anything that can help us is a good thing.
Falling into depression from all the doctors, medications, your role in the family and how much pain you're in is common, but still serious. I see a psychiatrist, some people see counselors. Support groups help. But I think it's very important to tell either your primary care doctor or rheumatologist if it is causing you to feel sadness or anxiety most of the time. Don't let your illness define you. And get help. I did.
I just wrote about a few things that were not as basic. I'm open to suggestions. I'm not a doctor, just someone suffering from Sjogren's and Fibromyalgia (who happens to be neurotic with adult ADHD).
I hope something I wrote helps.
peace & love,
sunee
- Posted using BlogPress from my iPad
Monday, August 15, 2011
a little about Sjogren's
There are so many symptoms associated with autoimmune diseases besides pain, today I thought I'd focus on some of those.
Those of us with Sjogren's make no saliva. Try to find mints or gum with Xylitol. The brand Spry even makes a tooth paste gum and mints. It's important to sip a lot of water. I can't emphasize how important proper dental care. It is absolutely imperative. Dry mouths cause tooth decay and a lot of problems that may make us lose our teeth.
Dry eyes make it hard to see because of blurriness and sensitivity to light. Use Sterile eye drops in the vials and use strong sunglasses. I prefer Systane. It's easy to use vials make your eyes feel great. Only vials of eye drops are truly steril. See your Eye professionals regularly.
I also suggest seeing your eye doctor to either check your current prescription (mine changed dramatically) and if needed, get something stronger. I'm going to get Transitions Lenses on my new pair so that I won't have so much trouble with light.
Thick body creams are necessary because our skin will dry up.
Lotions are not enough. Keep showers to a tepid level. Hot water dries skin out. Eucerin, Nivea, and Blue-Emu work exceptionally well. Blue-Emu helps with muscle pain as well.
Look out for rashes. They may indicate other problems. Whether the rash is tiny, on your face, or, what I have, on your nails, get it checked out.
Take fatigue and pain seriously. You need to take care of yourself in order to be there for other. I'm not as good at that as I should be. As a result I have more pain.
Autoimmune diseases cause pain in our joints. Be aware of where and what type of pain you have so that you can tell your rheumatologist.
This is a short list for a start. It's just the beginning. I'll delve deeper. But watch those rashes!
peace & love,
sunee
Those of us with Sjogren's make no saliva. Try to find mints or gum with Xylitol. The brand Spry even makes a tooth paste gum and mints. It's important to sip a lot of water. I can't emphasize how important proper dental care. It is absolutely imperative. Dry mouths cause tooth decay and a lot of problems that may make us lose our teeth.
Dry eyes make it hard to see because of blurriness and sensitivity to light. Use Sterile eye drops in the vials and use strong sunglasses. I prefer Systane. It's easy to use vials make your eyes feel great. Only vials of eye drops are truly steril. See your Eye professionals regularly.
I also suggest seeing your eye doctor to either check your current prescription (mine changed dramatically) and if needed, get something stronger. I'm going to get Transitions Lenses on my new pair so that I won't have so much trouble with light.
Thick body creams are necessary because our skin will dry up.
Lotions are not enough. Keep showers to a tepid level. Hot water dries skin out. Eucerin, Nivea, and Blue-Emu work exceptionally well. Blue-Emu helps with muscle pain as well.
Look out for rashes. They may indicate other problems. Whether the rash is tiny, on your face, or, what I have, on your nails, get it checked out.
Take fatigue and pain seriously. You need to take care of yourself in order to be there for other. I'm not as good at that as I should be. As a result I have more pain.
Autoimmune diseases cause pain in our joints. Be aware of where and what type of pain you have so that you can tell your rheumatologist.
This is a short list for a start. It's just the beginning. I'll delve deeper. But watch those rashes!
peace & love,
sunee
Sunday, August 14, 2011
Pain and plans
When we make plans generally our intention is to keep them. Everyone, those of us with chronic pain and other symptoms, and those of us without such conditions.
I remember trying to get out of plans when I was younger and didn't suffer from severe pain. Sometimes we just don't want to do or go to whatever it is.
Then there are the times I really want to keep my plans and I can't. Pain wins. It is frustrating and makes me feel isolated. I don't mean mild or dull pain. I mean pain that makes me edgy and takes over my whole body and I really can't go anywhere. I get like that often.
That makes me feel bad and sad. Bad because I wanted to be with those I had plans with and sad that I have such severe pain. I also feel angry. (Which, of course, makes the pain worse.)
The problem is that many of us feel guilty when we have to cancel. Guilt isn't even an emotion so we need to drop that right away.
Whether we have the flu or a conflict or fibro and/or an autoimmune disease it is generally hard to be a no show. We might feel we missed out or let someone down.
Pain causes a lot of problems. We are, "I'll do my best to be there." Maybe we used to be "Yes" people. The ones you could always count on. I have a hard time letting go of the "Yes" mentality because I have to miss out on a lot of things.
Instead of feeling sorry for ourselves we need to adjust our thinking and attitudes to, "I'm doing the best I can."
Let's be happy with what we can do and let go of what we can't. We don't deserve to feel bad. We have enough to worry about.
peace & love,
sunee
- Posted using BlogPress from my iPad
I remember trying to get out of plans when I was younger and didn't suffer from severe pain. Sometimes we just don't want to do or go to whatever it is.
Then there are the times I really want to keep my plans and I can't. Pain wins. It is frustrating and makes me feel isolated. I don't mean mild or dull pain. I mean pain that makes me edgy and takes over my whole body and I really can't go anywhere. I get like that often.
That makes me feel bad and sad. Bad because I wanted to be with those I had plans with and sad that I have such severe pain. I also feel angry. (Which, of course, makes the pain worse.)
The problem is that many of us feel guilty when we have to cancel. Guilt isn't even an emotion so we need to drop that right away.
Whether we have the flu or a conflict or fibro and/or an autoimmune disease it is generally hard to be a no show. We might feel we missed out or let someone down.
Pain causes a lot of problems. We are, "I'll do my best to be there." Maybe we used to be "Yes" people. The ones you could always count on. I have a hard time letting go of the "Yes" mentality because I have to miss out on a lot of things.
Instead of feeling sorry for ourselves we need to adjust our thinking and attitudes to, "I'm doing the best I can."
Let's be happy with what we can do and let go of what we can't. We don't deserve to feel bad. We have enough to worry about.
peace & love,
sunee
- Posted using BlogPress from my iPad
Saturday, August 13, 2011
everyday is a good day
It is so easy to feel stuck, frustrated, pissed off, and, unfortunately, sorry for ourselves.
My new approach to each day is that it's a good day- even with pain.
We are blessed with each day, even if it isn't pain and problem free. We can start by making our children and spouse a priority without taking about our pain. Find out what's happening with them. Let them be the center of attention.
Those of us with with chronic pain conditions need some positive things in our lives. We're responsible for finding things that make us feel good. Feeling positive comes from our mind and than through actions.
However, due to the extreme pain and seriously uncomfortable problems that go along with our conditions, we may need to put the positive act first and let the positive feelings will follow.
What makes you feel good? It's important to figure that out so that you don't just suffer. It's a great distraction and might be something that helps someone.
Everyday is another chance to enjoy life and the our loved ones. It's up to us how that goes.
So, enjoy yourself and your loved ones today. Hopefully it will become habit.
peace & love,
sunee
My new approach to each day is that it's a good day- even with pain.
We are blessed with each day, even if it isn't pain and problem free. We can start by making our children and spouse a priority without taking about our pain. Find out what's happening with them. Let them be the center of attention.
Those of us with with chronic pain conditions need some positive things in our lives. We're responsible for finding things that make us feel good. Feeling positive comes from our mind and than through actions.
However, due to the extreme pain and seriously uncomfortable problems that go along with our conditions, we may need to put the positive act first and let the positive feelings will follow.
What makes you feel good? It's important to figure that out so that you don't just suffer. It's a great distraction and might be something that helps someone.
Everyday is another chance to enjoy life and the our loved ones. It's up to us how that goes.
So, enjoy yourself and your loved ones today. Hopefully it will become habit.
peace & love,
sunee
Friday, August 12, 2011
crazy pain
I have flare ups like everybody else with Fibromyalgia and autoimmune diseases, but sometimes the pain is so bad I feel like I'm losing my mind.
I have to say that I am not having a flare up. I have severe pain everyday. Somedays it's worse than others. However, it's at the point where I can barely do anything, let alone go anywhere.
A short trip to the store might leave me exhausted and bedridden with heating pads for the rest of the day. The same with a trip to the doctor.
The reason I'm telling you all of this about me is for all of you that can relate. You're not crazy. The pain is real. And if you have Sjogren's Syndrome you have all of the eye, mouth and all sorts of other problems besides terrible joint pain.
Today I handled the severe "flare up" of the day by trying to organize my desk. I couldn't sit still because my legs were having a strange pain that made them need to move. So I went downstairs for no reason, back up stairs and then I did it again. By then I had made the pain worse and I needed to be still (with my heating pads).
The positive thing I did next was calling a friend. I talked a little about my pain, but I listened to her problems and it calmed me down. After the call I wasn't acting so crazy. I took care of myself.
So, all I wanted to express today is that pain can get so bad we feel crazy. Obviously it isn't good to act crazy. We aren't crazy. We just have extraordinary levels of pain. It's not in our heads and I hope no one feels that maybe some of the pain is in his/her head. It's real. Very real.
When the pain gets crazy try to do something calming. Deep breaths, journaling, talking to someone who empathizes, taking a warm bath.
We're not crazy- even if the pain makes us act that sometimes.
peace & love,
sunee
I have to say that I am not having a flare up. I have severe pain everyday. Somedays it's worse than others. However, it's at the point where I can barely do anything, let alone go anywhere.
A short trip to the store might leave me exhausted and bedridden with heating pads for the rest of the day. The same with a trip to the doctor.
The reason I'm telling you all of this about me is for all of you that can relate. You're not crazy. The pain is real. And if you have Sjogren's Syndrome you have all of the eye, mouth and all sorts of other problems besides terrible joint pain.
Today I handled the severe "flare up" of the day by trying to organize my desk. I couldn't sit still because my legs were having a strange pain that made them need to move. So I went downstairs for no reason, back up stairs and then I did it again. By then I had made the pain worse and I needed to be still (with my heating pads).
The positive thing I did next was calling a friend. I talked a little about my pain, but I listened to her problems and it calmed me down. After the call I wasn't acting so crazy. I took care of myself.
So, all I wanted to express today is that pain can get so bad we feel crazy. Obviously it isn't good to act crazy. We aren't crazy. We just have extraordinary levels of pain. It's not in our heads and I hope no one feels that maybe some of the pain is in his/her head. It's real. Very real.
When the pain gets crazy try to do something calming. Deep breaths, journaling, talking to someone who empathizes, taking a warm bath.
We're not crazy- even if the pain makes us act that sometimes.
peace & love,
sunee
Thursday, August 11, 2011
reaching out
When I'm home all day (or even if you work) I tend to isolate quite a bit. I don't want to have nothing to say but what hurts or what problems I'm having. It's what is predominately on my mind.
Yet, I know that I am more than that. I am a wife, mother and daughter. I have a great sense of humor. The Beatles and Scrabble. I love to read. I'm a foodie. I write plays and short stories I'm trying to publish. I'm even trying to start a novel.
That's just a short introduction. What defines you besides your illness(es)? What do you have to offer to friendships and support groups?
Defining ourselves becomes extremely important when we're suffering daily. We tend to talk about it all day. I agree that there are times when our pain takes top priority. But, there are times to just be who we are.
Depression and fear kept me from reaching out to friends. I might have had some nice visits or friends coming over for tea if I made the effort to call them up and plan something.
Reaching out can be scary. Maybe joining a support group might be a good start for you. And, you can text your friend, you don't have to call if you feel intimidated. I know I felt that way and sent a text to my friend inviting her for tea.
Figure out what defines you that has nothing to do with your doctors. Try to enjoy some of that. That should give you the confidence to reach out.
I highly recommend joining a support group. If you're not feeling the first one, try another.
Let's redefine ourselves.
peace & love,
sunee
Yet, I know that I am more than that. I am a wife, mother and daughter. I have a great sense of humor. The Beatles and Scrabble. I love to read. I'm a foodie. I write plays and short stories I'm trying to publish. I'm even trying to start a novel.
That's just a short introduction. What defines you besides your illness(es)? What do you have to offer to friendships and support groups?
Defining ourselves becomes extremely important when we're suffering daily. We tend to talk about it all day. I agree that there are times when our pain takes top priority. But, there are times to just be who we are.
Depression and fear kept me from reaching out to friends. I might have had some nice visits or friends coming over for tea if I made the effort to call them up and plan something.
Reaching out can be scary. Maybe joining a support group might be a good start for you. And, you can text your friend, you don't have to call if you feel intimidated. I know I felt that way and sent a text to my friend inviting her for tea.
Figure out what defines you that has nothing to do with your doctors. Try to enjoy some of that. That should give you the confidence to reach out.
I highly recommend joining a support group. If you're not feeling the first one, try another.
Let's redefine ourselves.
peace & love,
sunee
Wednesday, August 10, 2011
gratitude list
First of all, you only have to write things your grateful for when you feel them. If you tend to be negative most of the time you can make it a habit to write at least one thing on your list.
Second, you're not comparing your list to others, so go ahead and write that your favorite show came on, that your dog(s) were good, that you went to the beach (lake or river), that you finished reading a book, that someone else went to the market and so on.
I wrote that I was grateful for my husband (multiple times) for being so helpful, I put my children on my list because I'm grateful for them everyday. I write one word entries and sentences. I hate getting mammograms so instead of complaining I wrote that I was grateful to get one because there are so many women who can't.
This list should be however you want it. It's a great reminder on those bad days. Also, by writing in the book it allows us to think positively and as a result, become happier.
It shouldn't be something to fret over. If you can't think of anything, by write something as simple as I'm grateful I'm awake and alive today.
I know many of us feel so much pain daily it becomes hard to be grateful, but this is our life, so maybe you can think of something your grateful for.
I hope you get the hang of it.
peace & love,
sunee
Tuesday, August 9, 2011
being grateful
Being grateful is difficult if you're always in pain or dealing with thinning hair or strange skin problems from an illness.
Let's face it, being grateful is difficult without any illness at all. We feel frustrated, passed over or given difficult challenges to live with.
How do we feel grateful and remember to be grateful each and everyday.
Well, I heard something that I'm "borrowing" because I believe it will work for myself and many others.
Instead of writing down a few things we're grateful for now and putting it somewhere you'll forget about and then find under some bills later.
What if we started a Never Ending Gratitude List. This might be something to keep in a notebook or the journal you don't know what to do with.
I started by writing three things I was grateful for yesterday in a beautiful journal I bought but wrote nothing in it yet.
Today I may only find two things I'm grateful for, or maybe I'll have five things.
If we do this everyday- and, of course we're only human and we might skip a day here and there- then when we're feeling down or ungrateful we have our Never Ending Gratitude List to read and reflect on.
This might be all we need to feel a little better. It's almost impossible to be grateful and feel sorry for yourself at the same time.
Gratitude keeps us smiling and feeling that everything will work out as it should.
You don't need a fancy journal. A steno pad, a regular notebook, printer paper stapled together will all work for your list. If your creative you can make a beautiful cover for it. But do it, creative or not.
I'm grateful that I get to share this with you.
peace & love,
sunee
Let's face it, being grateful is difficult without any illness at all. We feel frustrated, passed over or given difficult challenges to live with.
How do we feel grateful and remember to be grateful each and everyday.
Well, I heard something that I'm "borrowing" because I believe it will work for myself and many others.
Instead of writing down a few things we're grateful for now and putting it somewhere you'll forget about and then find under some bills later.
What if we started a Never Ending Gratitude List. This might be something to keep in a notebook or the journal you don't know what to do with.
I started by writing three things I was grateful for yesterday in a beautiful journal I bought but wrote nothing in it yet.
Today I may only find two things I'm grateful for, or maybe I'll have five things.
If we do this everyday- and, of course we're only human and we might skip a day here and there- then when we're feeling down or ungrateful we have our Never Ending Gratitude List to read and reflect on.
This might be all we need to feel a little better. It's almost impossible to be grateful and feel sorry for yourself at the same time.
Gratitude keeps us smiling and feeling that everything will work out as it should.
You don't need a fancy journal. A steno pad, a regular notebook, printer paper stapled together will all work for your list. If your creative you can make a beautiful cover for it. But do it, creative or not.
I'm grateful that I get to share this with you.
peace & love,
sunee
Monday, August 8, 2011
letting go
Many of us have family issues or life problems that we try to fix, we think about often and we probably stress out over whatever it is.
All that built up stress can increase our pain more than we realize. That tightness in your shoulders and neck, your hips, your whole body if you're like me.
When we let go of what we cannot control we release ourselves from unneeded stress. Generally we stress over people, places and things we have no control over no matter how hard we tried.
We need to let that go. Give it to whatever spiritual being you believe in, and if you don't believe in any just give it to the sky.
Letting go isn't as easy as I may be making it sound. But if we try everyday to let go of the issues, resentments and problems that weigh us down and cause more pain, we will begin to feel better.
I get quiet and I picture the issue leaving me. I feel the resentment dissolve. I forgive others and I forgive myself. I don't say it out loud, I visualize these things leaving and dissolving. I am a very visual person.
Maybe you need to write down what you want to let go of. After you write your list of what needs to be let go of, maybe get rid of the paper as a way of sealing the fact that you're letting them go. You can rip up the paper and flush it. You can put it in the fireplace or BBQ and set it on fire.
The point is we need to let go. We ned to be free of things that add to our pain- physical and emotional. Emotional pain can cause us serious pain.
There are so many ways to let go. Prayer, meditation, writing everything down and giving it to whatever spiritual being we believe in.
We have enough physical problems. If we can let go of some old resentments or issues weighing us down, we can relieve ourselves of at least some pain. Maybe migraines will lessen. Maybe our joints won't ache as badly.
Let go. We don't need any negativity in our lives. We suffer enough.
peace & love,
sunee
Sunday, August 7, 2011
Happiness
How in the world do you find happiness when you're in pain all of the time?
It's hard enough not to have pity parties let alone be happy, right?
Wrong! I am a happy person by nature, but I've fallen into dunks over how little I can do now. Last night I cried over the severity of my pain. But I woke today (with pretty bad pain) in a great mood.
I truly believe it's the little things that make us happy. Like singing Beatles songs to my dogs as a fun way to start my day. (Besides the fact that they're the only ones who enjoy my singing.)
We may have had to give up activities we truly loved, but it's up to us to find new ones. Or, bring out ones we've forgotten about. I brought out puzzles because there is a frustration that leads to great satisfaction when we've completed one. and, I only worked on it in 20 minute increments so I wouldn't add to the pain in my back and neck.
That's just one small example. Because I believe that happiness is a choice it's up to me to a) not feel sorry for myself, and b) do the things that make me smile and bring me joy.
We can make accommodations for certain activities, such as the practice of Yoga or a low intensity sport (with doctor's approval).
It's half attitude and half doing. Just sitting around in pain and miserable wondering why we aren't happy isn't going to help matters.
Make a "happy list" as corny as that sounds. Put a note on your bathroom mirror reminding yourself to enjoy the day. Color, knit or crochet, read, journal, call a good friend, bake cookies...
One thing that has kept me smiling is fixing myself up everyday. Well, almost everyday. No living in sweats with hair in a mess. I don't mean party attire, just nice enough to see people. May invite people over for tea, then you'll already be dressed.
Make the choice to be happy. You won't regret it.
peace & love,
sunee
- Posted using BlogPress from my iPad
It's hard enough not to have pity parties let alone be happy, right?
Wrong! I am a happy person by nature, but I've fallen into dunks over how little I can do now. Last night I cried over the severity of my pain. But I woke today (with pretty bad pain) in a great mood.
I truly believe it's the little things that make us happy. Like singing Beatles songs to my dogs as a fun way to start my day. (Besides the fact that they're the only ones who enjoy my singing.)
We may have had to give up activities we truly loved, but it's up to us to find new ones. Or, bring out ones we've forgotten about. I brought out puzzles because there is a frustration that leads to great satisfaction when we've completed one. and, I only worked on it in 20 minute increments so I wouldn't add to the pain in my back and neck.
That's just one small example. Because I believe that happiness is a choice it's up to me to a) not feel sorry for myself, and b) do the things that make me smile and bring me joy.
We can make accommodations for certain activities, such as the practice of Yoga or a low intensity sport (with doctor's approval).
It's half attitude and half doing. Just sitting around in pain and miserable wondering why we aren't happy isn't going to help matters.
Make a "happy list" as corny as that sounds. Put a note on your bathroom mirror reminding yourself to enjoy the day. Color, knit or crochet, read, journal, call a good friend, bake cookies...
One thing that has kept me smiling is fixing myself up everyday. Well, almost everyday. No living in sweats with hair in a mess. I don't mean party attire, just nice enough to see people. May invite people over for tea, then you'll already be dressed.
Make the choice to be happy. You won't regret it.
peace & love,
sunee
- Posted using BlogPress from my iPad
Location:Home
Saturday, August 6, 2011
pain and panic
Many times when we have pain we panic. This is true for those of us with chronic pain conditions or not.
Pain is scary. Why am I hurting? Could it be serious? What should I do?
I'm not referring to accidents like when I broke my nose. I knew exactly why I was hurting- but it was still scary.
I'm referring to the where did this come from pain. Rapid onset pain. And, if you don't have a chronic pain condition I would advise you get to the doctor. Random pain can be serious. Don't be stubborn.
So, when we get this pain it isn't the time to get worked up and Oh my gosh what do I do? Should I do this, take that, use this, et cetera. It's hard, I know from experience, but we need to remain as calm as possible.
For those of us with pain most of the time a new or worse pain can lead to panic. I get terrible anxiety if I don't slow down. Maybe get a family member to help if you're immobilized or feel you can't move. Call out for help in a calm manner. We don't want everyone freaking out.
Acknowledge the pain and the fear and then figure out what to do next. Do you have medication? Do you have a routine for when pain strikes?
I always say take deep breaths. It will clear your mind of all the mind chatter, relax your body and allow you to determine what is the best way to handle this pain.
I still panic and have anxiety when pain worsens or won't stop for even a few minutes. Honestly, that's leading to more pain or worsening the pain I've got because I'm freaking out (a little, sometimes a lot). When I finally breathe deeply I am much better prepared to deal with it. And, I don't have to scare my family.
Dealing with pain everyday is hard. We just need a toolbox of tricks (so to speak) to handle the really bad times. Music helps me. Breathing deeply helps me. My dogs help me and so on.
Try not to panic. I would hate to think of us feeling even worse. We are stronger than we even know.
May you be pain free.
peace & love,
sunee
Pain is scary. Why am I hurting? Could it be serious? What should I do?
I'm not referring to accidents like when I broke my nose. I knew exactly why I was hurting- but it was still scary.
I'm referring to the where did this come from pain. Rapid onset pain. And, if you don't have a chronic pain condition I would advise you get to the doctor. Random pain can be serious. Don't be stubborn.
So, when we get this pain it isn't the time to get worked up and Oh my gosh what do I do? Should I do this, take that, use this, et cetera. It's hard, I know from experience, but we need to remain as calm as possible.
For those of us with pain most of the time a new or worse pain can lead to panic. I get terrible anxiety if I don't slow down. Maybe get a family member to help if you're immobilized or feel you can't move. Call out for help in a calm manner. We don't want everyone freaking out.
Acknowledge the pain and the fear and then figure out what to do next. Do you have medication? Do you have a routine for when pain strikes?
I always say take deep breaths. It will clear your mind of all the mind chatter, relax your body and allow you to determine what is the best way to handle this pain.
I still panic and have anxiety when pain worsens or won't stop for even a few minutes. Honestly, that's leading to more pain or worsening the pain I've got because I'm freaking out (a little, sometimes a lot). When I finally breathe deeply I am much better prepared to deal with it. And, I don't have to scare my family.
Dealing with pain everyday is hard. We just need a toolbox of tricks (so to speak) to handle the really bad times. Music helps me. Breathing deeply helps me. My dogs help me and so on.
Try not to panic. I would hate to think of us feeling even worse. We are stronger than we even know.
May you be pain free.
peace & love,
sunee
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