had a great fall. Thats how I have felt for more than a week now so I really haven’t been around much. I am trying to find a happy medium at which I can get my homework done on time and done right, take care of my daughter and keep up a household of five people. The last week I have dragged myself out of bed, gotten my daughter off to school, cleaned (which consists of sweeping the floors, vacuuming floors, dishes, laundry, putting things away, cleaning bathrooms, making my bed, etc.) then trying to do homework. Not working, I end up so tired and sore I can’t concentrate and all I want to do is sleep, which is hard because I hurt.

So today I tried something new, I dragged myself out of bed, got my daughter off to school, poured my coffee, made my bed and started my homework and got it done! I did nothing else except dishes after supper. I still have to shower, and remember to find time for lunch(I forget to eat). So looks like the rest of the household is going to have to pitch in and help out some. With two of them in their 30’s i think thats a reasonable expectation!

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Fibromyalgia myths: The truth about 9 common myths

Get the facts about these nine common fibromyalgia myths. Learning all you can about fibromyalgia is the first step toward gaining control of your symptoms.

By Mayo Clinic staff

Fibromyalgia is a widely misunderstood condition that causes widespread pain and fatigue. If you’ve been diagnosed with fibromyalgia and are trying to learn all you can about the condition, you may come across some of the many common myths and misconceptions about fibromyalgia. Don’t let these myths confuse you or discourage you from seeking help for your fibromyalgia symptoms. Here’s a look at nine common myths about fibromyalgia and why each is wrong.

Myth:Most doctors don’t believe fibromyalgia is a real condition.

Truth:This myth may come from a misunderstanding. Since fibromyalgia is defined by a list of symptoms, claiming that fibromyalgia isn’t real is essentially saying that your symptoms aren’t real. That doesn’t make sense. Most doctors believe your symptoms are real.

The controversy comes when deciding whether fibromyalgia is a disease process that can be reversed or cured. Most doctors believe fibromyalgia is a set of symptoms that aren’t caused by an underlying disease. Most doctors believe that fibromyalgia symptoms can be managed, but there is no underlying disease to “cure.”

In some cases, a doctor may not be familiar with fibromyalgia. He or she can refer you to someone who knows more about the condition.

Finding a compassionate doctor can be a frustrating part of living with fibromyalgia. But don’t give up if you haven’t found the perfect doctor. Focus on finding a doctor who is willing to listen to you and take you seriously.

Finding a doctor who’s an expert on fibromyalgia may not be practical, for instance, if there aren’t many specialists in your area. But a doctor who’s willing to learn more about fibromyalgia and listen to your concerns can be an invaluable ally.

Myth:Fibromyalgia damages your joints.

Truth:Though fibromyalgia pain can be severe at times, it doesn’t damage your bones, joints or muscles. Some people worry that when pain worsens, it means that fibromyalgia is progressing. But that isn’t the case. While increasing fibromyalgia pain can make it difficult to go about your daily activities, it isn’t damaging your body.

Myth: You look fine, so there’s nothing wrong with you.

Truth:You know this is a myth, but friends, family and co-workers who don’t understand fibromyalgia may sometimes hold this belief. It can cause tension when others wonder if you’re faking your pain because they think you don’t look sick. Resist the urge to get angry and withdraw rather than explain how you’re feeling.

Open and honest communication can help others better understand fibromyalgia. Be honest about how you feel and let others know that if they have questions, you’re willing to listen and explain.

Myth:You were diagnosed with fibromyalgia because your doctor couldn’t find anything wrong with you.

Truth:Fibromyalgia is a specific diagnosis based on your symptoms, not a diagnosis you’re given when there’s nothing wrong with you. The American College of Rheumatology developed a set of criteria to help doctors diagnose fibromyalgia.

Diagnosing fibromyalgia often takes time. Since there’s no single test that can confirm you have fibromyalgia, your doctor will often run tests and procedures to rule out other conditions. Enduring repeated tests can be frustrating, but it’s an important part of determining whether your symptoms are caused by fibromyalgia or something else. The results will guide your treatment.

Myth:Fibromyalgia causes pain. Those other symptoms you’re experiencing must be caused by something else.

Truth:Fibromyalgia can cause symptoms in addition to pain. Many people with fibromyalgia also experience fatigue and difficulty sleeping. Other fibromyalgia symptoms may include headaches, sensitivity to light, dizziness, memory problems, and numbness and tingling in your arms and legs. A number of other conditions commonly accompany fibromyalgia, including irritable bowel syndrome, bladder control problems and mood disorders, such as depression and anxiety.

Myth:No treatments for fibromyalgia exist, so it’s no use going to the doctor.

Truth:There’s no standard treatment for fibromyalgia, and the Food and Drug Administration has approved just one drug for treating fibromyalgia. But you have many options for controlling fibromyalgia pain, including medications, lifestyle changes, and complementary and alternative treatments. Often you’ll need to try a few treatments in different combinations to determine what works best.

Myth: On days when you’re feeling good, you should try to do as much as you can since you may be unable to accomplish everything you want on other days.

Truth:Overdoing it on the good days may catch up with you. You may feel exhausted the next day and your fibromyalgia symptoms could worsen. But that doesn’t mean you should keep your activity to a minimum. Doing very little could weaken your muscles and increase your pain.

Cope with the good days and the not-so-good days by finding a balance. Pace yourself. Set goals for each day. Your goals should be reasonable. And they should include daily exercise and time for yourself, such as time to relax or listen to music.

Myth:Fibromyalgia is a life-threatening disease.

Truth:Fibromyalgia isn’t fatal and it doesn’t damage your body. Fibromyalgia symptoms fluctuate over time, sometimes getting worse and sometimes becoming milder. Fibromyalgia pain rarely disappears completely, but you can learn to gain some control over it.

Myth:You can’t have a productive life with fibromyalgia.

Truth:Learning to control your fibromyalgia pain takes time. It’s likely that the pain will never completely go away and you’ll have to accept that your life might never be the same. But that doesn’t mean your life can’t be satisfying and productive.

Work with your doctor to adapt your daily activities so that you can have time and energy for what’s important to you. Your strategy may include a number of approaches, such as setting goals, for instance, making time for relaxation exercises every day, or making lifestyle changes, such as walking most days of the week.

This was taken from the Mayo Clinic

You can find this and more information at http://www.mayoclinic.com/health/fibromyalgia/DS00079

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The fact that it is pretty. The cooler weather I could do without. This morning it wasn’t even a balmy fifty degrees. Now that makes for a rough morning. But the leaves are changing color and when you look outside it’s a colorful world. A tantalizing tease before winter hits with its gloom. I have grown to despise winter and cold and snow. Funny how this happens as we get older. I remember being a kid and you couldn’t keep me inside in the winter now it’s a struggle to get me out of the door!

Invisible Illness Awareness Week September 14-20th.

96% of illnesses are invisible!! To read more visit www.invisibleillness.com

I thought I would do this even though I missed the deadline, after all what the heck!!

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia, Diabetes and Arthritis, I can’t seem to do things in small numbers.

2. I was diagnosed with it in the year:I have been being diagnosed since 2002, Diabetes first followed by Fibromyalgia and then Arthritis.
3. But I had symptoms since: It seems like forever! I remember going to a Doctor in 1998 because of leg pain. Major leg pain. I was in accounting school and he told me it was from sitting in class and not being used to it for that length of time. I accepted it and dealt with it. 
4. The biggest adjustment I’ve had to make is: Admitting I can’t do it all, and having to remove my super woman cape.
5. Most people assume: That I am just fine.
6. The hardest part about mornings are: Wanting to stay in bed when it hurts too much to and stumbling about once I am up until I get my bearings.
7. My favorite medical TV show is: I don’t have one, never have.
8. A gadget I couldn’t live without is: My lap top, it goes where I go!
9. The hardest part about nights are: When I can’t sleep no matter what I do, and I am exhausted the next day!
10. Each day I take 8 pills & vitamins. (No comments, please) 8
11. Regarding alternative treatments I: Have yet to try any.
12. If I had to choose between an invisible illness or visible I would choose: Invisible, I can sit and look just as normal as the next person.
13. Regarding working and career: I am not working at this time, I am in college majoring in web design.
14. People would be surprised to know: The level of frustration I can actually reach!!!!!
15. The hardest thing to accept about my new reality has been: My limitations, I can’t run, I can’t go non-stop all day like I used to.
16. Something I never thought I could do with my illness that I did was: Improve! It was a lot of work! I went from using a walker to a cane to now just gimping along.
17. The commercials about my illness: Too unrealistic. Geta real person, not an actress, take off the make up and fancy clothes, bring out the sweats, mess up the hair and maybe some dark circles under the eyes.. Now thats more realistic!
18. Something I really miss doing since I was diagnosed is: redoing 🙂 houses that is.
19. It was really hard to have to give up: My level of activity and learning to pace myself.
20. A new hobby I have taken up since my diagnosis is: The computer 🙂
21. If I could have one day of feeling normal again I would: After the initial shock that something was seriously wrong wore off I would spend the day with my kids and grandkids doing the things I normally can’t.
22. My illness has taught me: So much! I am not invincible, I do not judge others by appearance, I am more patient and compassionate and when some one needs to talk I really listen to what they are saying after finding out how it feels when people don’t listen and you really need to talk!
23. Want to know a secret? One thing people say that gets under my skin is: I was told I had no idea what pain is. This upset me more than anything else that has been said about my illnesses. I live with pain everyday and have long enough to forget what it feels like to know what not feeling pain is!
24. But I love it when people: Treat me like they would anyone else.
25. My favorite motto, scripture, quote that gets me through tough times is: There is always someone out there worse off than I am, and this is so true!
26. When someone is diagnosed I’d like to tell them: Life is not over it is just changing!
27. Something that has surprised me about living with an illness is: How ignorant people can be, or unwilling to learn about the illnesses.
28. The nicest thing someone did for me when I wasn’t feeling well was: Talk to me on the phone all night when I was too sore to sleep’
29. I’m involved with Invisible Illness Week because: I hope people read and learn and become informed.
30. The fact that you read this list makes me feel: Exuberant!!!

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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of which I am one 🙂 Carrie of Carrie’s Kitchen Creations has an interview on Examiner.com with Donna Diegel! It is a great interview and her blog is just amazing. So take a look and visit Carries Kitchen Creations for some of the best recipes, hints and lots of other information!

Where were you on 9-11? Do you remember? It’s funny how such an event can leave a memory of the very thing you were doing at the very moment it happened. I was in NYC  April of the same year and was amazed at the size of the World Trade Center and the day of 9-11 I was in my office working when my daughter called me from college and told me to turn on the TV. Shock is the only work I have to describe how I felt! How could this have happened? It did and today we remember all who lost their lives and all who lost a loved one, a friend, or a co-worker.

 
Image by Jose P Isern Comas via Flickr

World Trade Center, 1991 - New York City, New ...

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I have been reading several blogs lately and one in particular keeps pulling me back, so if you haven’t visited Fibrmyalgia Haven you might want to, once there you will keep going back.

Anyway, one of the posts really made me think. When I first became ill I had no idea what was going on and fear consumed me, not just a little, it took over. A chronic illness can make or break a marriage. I was so fearful of what was wrong with me, the fear of the unknown is the worst fear I have experienced and instead of turning to those I cared about and who cared about me I pulled away and I hid.

My marriage went to hell. Not wanting to be a burden I pulled away instead of turning to someone who I know loved me. I thought I was doing us both a favor. Instead I went deeper into my hole and he felt so pushed away that we drew further and further apart. I wonder if I hadn’t done this and if I had said hey I am afraid, no I am terrified, things would have turned out very different. Any attempt he made to communicate I met with such defensiveness he felt I considered him the enemy. How far can you push someone away until they say thats enough?

Once I was diagnosed with Diabetes, Fibromyalgia and Arthritis, I felt even more like a burden. I will never forget the night he took me to dinner and when we got home he told me how much he wanted to try t make our marriage work and I told him to leave, again because I did not want to be a burden. I think of this often. And the pain we both went through, and how our fighting each other in court for four years to try to hurt the other was such a waste of time. And how we both went through our own hell spiraling downward in different directions, trying to hide the pain and hurt and loss. Not only did we lose each other, our family was torn apart.

If only I had it to do over again..Those famous words. But that doesn’t happen.

If I had any advice to give anyone going through what I did, the fear of  the unknown, deciding for myself I was going to be a burden and pulling away, I would say don’t so it! Turn to the ones who love you thats why they are there. If you don’t you could lose something irreplaceable. If you do you can build something very strong and enduring.

I look at where our lives have gone and the effect it has had on so many people and it makes me sad that it had to happen at all.

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