informed, but not too informed

It's important to learn about a medical condition you're diagnosed with.


When I was first diagnosed, and whenever I feel worse or have new symptons, I start reading up on Fibromyalgia and Sjogren's Syndrome.


Sometimes we read and research to the point that we freak ourselves out, feel symptoms we didn't before, question the diagnosis and worry ourselves sick.


I have books about both conditions. I even have one on living with Sjogren's, what to expect as the disease progresses since my own body is attacking itself in certain ways.


I have, however, worked myself into a panic by reading too much about the future- when I don't even know how severe the Sjogren's will progress.


As far as Fibro, make sure what you're reading is up to date. Much of it may be helpful and may help you write a list of questions to ask your doctor. Or, it can scare you.


My (new) philosophy on reading about and researching is to do it when something new has actually occurred and reading only about that. There is so much information available. It's hard to know when enough is enough. For our own good, keep it to what you need from who you trust.


We're all looking for answers, but keep in mind that we may not be reading legitimate or up to date information. Check your sources.


And remember, too much information can be a dangerous thing.


peace and love,
sunee

letting go and letting others

No matter what our health or circumstances, delegating chores and errands takes the load off the person who normally handles those sort of things.


In my case, I used to run the errands and do a good deal of chores as well. Now I need to have help.


The most important thing that comes from our, "letting go and letting other," stems from the fact that our loved ones feel needed and have a purpose. There's nothing to be gained from being a martyr. Martyrdom is generally accompanied by some sort of, "whoa is me. I do so much," speech. That just builds resentments.


When we allow people to help us we all benefit. For example, I need help with everything from getting my laundry downstairs to getting a ride to my many doctor appointments. Letting go of all the control that comes with martyrdom frees us up in many ways.


I personally need a lot of help these days and I was the typical workaholic and control freak. It was difficult to let my husband grocery shop at first. By and by I am taking all the help offered and that I shouldn't be doing, anyway.


If you're struggling with health issues take all the help you can get. If you can afford it, get a housekeeper, a dog walker, or anything that is difficult to do.


I still wear myself out at times, but I'm a slow learner. Our first responsibility is to ourselves, because we're absolutely no good to anyone if we break down. And I mean break down- over stressed from bills and that sort of thing, stressed from pain and discomfort, and, maybe even cranky.


By letting go and letting others we are letting them in to our lives and strengthening relationships.


Who cares if it's not the way you do it? No one expects perfection once they let go. 


Aah, I think I'll take a hot bath as my family cooks and cleans up dinner.


peace and love,
sunee

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to work or not to work

To work or not to work, that is the question. Well, it is for many people with Fibromyalgia and/or autoimmune diseases. 


Not all of us have a choice. I could have continued teaching, but the degree to which I suffering was ridiculous and the pain was written all over my face. And here I was thinking no one could see through my facade. After all, I used to teach acting and enjoyed acting myself. 


However, there are many people with fibro that's a lot easier to manage. Fibro ranges from some discomfort and those who have bad days or flare-ups that may keep them home once in a while to serious pain daily.


But what about those who have more frequent flare-ups, but not enough to cause them to leave a career they enjoy? Not everyone has an understanding and accommodating boss/superior. There's also the money and health insurance issue. 


Financial issues can force someone to suffer to get through each day. I am learning to cut back. I don't need cute new clothes all of the time. I can live without a new, designer purse. Okay, those are tough things to give up for a woman like me, I'm not going to lie. But every "sacrifice" is justified every morning, struggling to get my stiff, hurting body out of bed. 


I'm sure many others haven't been able to control their pain, either. Then we are faced with working or not. I do write when I feel well enough, but that is also enjoyable. Plus, it's easier to use a computer sitting down.


Since I stopped working I've dealt with the rolling eye attitude that my  daily pain kept me from working. "Did you think about going part-time?" or "You're so lucky you can stay home all day!"


I am lucky in that my husband and family support my staying home. In fact, not everyone supported my going back to work. They were right, too. The excitement of teaching at a different school, in an environment I loved, wore off as the weather started to cool and I could barely move. I cried often.


I respect those who can work through the pain, the "fibro fog" and the lack of energy that occurs. I also respect those who love their career and change their schedule or uses their vacation and sick days for flare-ups. But for some of us, it just isn't possible.


Maybe if I were tougher, ate a specific diet, got acupuncture or got a new, better medication...


Well, I take a lot of medications. A lot. And from what I read I take the best and latest medications for my conditions. Believe me, getting to stay home in horrendous pain doesn't feel so lucky. It can be lonely and frustrating. (Plus, where am I going to wear all my cute work clothes?)


When you have a disability that people cannot see many of them will make assumptions. Yet, the choice to work or not is personal and no one should make it based on what uneducated people have to say. 


Taking care of ourselves is the most important thing. The choice needs to be based on your particular pain and other symptoms. 


Don't worry about what other people think. Try to laugh it off. If you're in the position to make the decision currently, give some serious thought to how your body feels and your quality of life while working. 


Whatever works best for you is the right choice.


peace and love,
sunee

I may be crazy, but...

It's all in your head.


That's what many people with Fibromyalgia are told. Well, implied. I went through that for about six years before I finally had it confirmed that I was, in fact, suffering. Not that I wasn't benefiting from the visits to the psychiatrist, but I was still in horrible pain.


As it turned out I had more than Fibro. I made the rounds of specialists and they found the Sjogren's Syndrome, after which I was diagnosed Fibro.


It was a long road. I know many of you have played the diagnosis game for a variety of health reasons. It does start to make a person feel a bit crazy.


What I didn't appreciate was being told I didn't have anything wrong with me aside from a case of depression. Not that I didn't suffer from depression, but that was after I was told all that was wrong with me.


I still have bouts with depression. It can be discouraging to never feel good. However, now I know that comes with the territory. And, that it's okay.


I know that many of us take what people tell us about ourselves to heart. If they said it, it must be true, right? Not so much.


We know more about what's going on with us than we give ourselves credit for. I wish I knew that eight years ago. Maybe longer. 


It's not only beneficial but also more fun to accept who we are. We'll make more headway in all aspects of our lives. I'm practicing acceptance more and more everyday.


And, it's okay to be a little crazy. Or a lot.


peace and love,
sunee


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It's okay

I know it stresses many of us out when we don't achieve anything that day, week, hour. I used to be an overachiever and workaholic. I enjoyed it like crazy. I felt accomplished. And I knew what I did was good.


Things change. We change occupations, we slow down, maybe we get sick.


Whatever the reasons, it's okay. We don't have to accomplish something every hour, day or week. That doesn't make us less than. It may improve the quality of our lives. Or, maybe you changed occupations to something slower paced.


In my case, I got sick. I've had a hard time learning it's okay. It's okay that I'm not accomplishments everyday. It's okay that I don't work. It's okay that I can't make dinner many days, or run errands for that manner. It's okay that I can only write somedays. 


It's okay. 


No matter what our circumstances, it's okay to stop trying to do it all. In the long run, slowing down adds only goodness to our lives.


I have had trouble appreciating this slow lifestyle. Once I stopped working I was going to write everyday. I was going to tackle household projects. I was going to cook great food every night. But it hasn't worked out that way.


And, it's okay.


I write when I can. I cook once in a while. I just rest, relax and try to show some improvement.


We have to realize that we don't have to be number one- student, employee, mother...


It's okay.


Let's just be the best we can be and let that be okay. We'll be much happier that way.


peace and love,
sunee


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*** It is only $20 and it has 30 RAWmazing recipes that are SUPER SCRUMPTIOUS and VERY simple to prepare.

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Writing

When you're stuck at home in pain (or due to other reasons) it can get boring, irritating and can easily lead to Depression. We begin we feel useless at times.


If we can't get out to appreciate the beautiful summer weather there are things I do that help me feel useful. productive and not just stimulated but entertained.


I have many days when all I could do was rest and I was left with feelings of uselessness and depression.


We do have a lot of fun things at our disposal. I write. Plays, poems, short stories, and, soon, the great American novel (if you're hearing "Paperback Writer" by The Beatles we're on the same page).


I can honestly confess I am not motivated when I am in horrible pain, but on days when the pain is moderate I work on my writing. 


You don't have to be a "writer" to write. Journaling is a great start. I don't mean the "Dear Diary" kind of thing, unless you're into that, I mean draw in your journal, cut out pictures from magazines or get things from the internet. Make a recipe book, for example. A book for your relatives, with pictures that follows a story line. Or maybe a children's story for your kids or all those ones in your family. 


But if you want to write "real" stories there are kits to get you started and a million sites online with how to get your writing going with character ideas et cetera. Or write angry mail to your condition or pain.


And then there's crafting. I cannot begin to list all of the wonderful crafting hobbies there are. It's all about enjoying yourself instead of suffering and the sense of accomplishment. And many crafting hobbies are inexpensive.


We are always in control of how we respond to our circumstances. May you find something that eases the pain or problems.


peace and love,
sunee

having a "life"

After being laid up for several months I have come to a few realizations. I am imagining you're thinking, "What else would she be doing with all that time?" I agree. It took me quite a while. First I felt sorry for myself, with my heating pads and constant pain. Then I got confused about who I was now and what would, or should, I do. Then I experienced depression.


My pain has gotten worse, but I've gotten out a bit more. I'm not hitting the clubs or being a social butterfly. I've started doing things that I enjoy but are realistic for someone with Fibromyalgia and Sjogren's Syndrome. I mean tons of doctor's appointments are fun and all, but variety is nice.


I joined a positive support group. We go on short walks (at a moderate pace) and talk about life. I've been to a concert I really wanted to attend. I have had short visits with friends- long enough to be enjoyable, yet short enough not to exhaust me. I go for short walks and drives with my husband.


Everyone has to find their own way to have in their a lives while dealing with chronic pain and other conditions. I can only offer what I'm doing. But, it is really changing my attitude. I feel less isolated. I find it easier to relax when I'm not busy and I'm not as angry about my pain anymore. 


Life is good. Sometimes it feels more complicated and difficult to remember that. But, it's our job. My pain may never go away. In fact it's increasing. But I'm still here and I want a life.


And let's add in family- especially children. I don't think it's healthy to be mopey all the time and make them feel scared, confused and maybe even sick of it.


Hobbies help, too. Whatever works for you. Whatever takes you away from the stress, pain and depression. 


We can have a life. It just may not be the life we imagined. Honestly, do things ever go how we imagined, anyway?


So add a few small activities to your routine and smile. We are blessed with the life we've been given, problems and all.


May you feel happiness with your life.


peace and love,
sunee

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