Friday, June 24, 2011

All-Star Week!!!

We are in Pendleton, Oregon in NE Oregon. Grandson Josh plays in the All-Star tournament this weekend. If they do well enough through Monday, they play in finals and championship game. Please cross your fingers and toes!!

We worked in the park this morning, gathered our things and headed for Josh's house. We hooked up to the little RV and headed for Pendleton. I'm pooped but excited to watch the ball games. The kids have worked hard for this honor. The coaches select a team from the top ball players in their area. The weather is supposed to be mid-70's with a breeze Saturday and Sunday. Monday it will be in the 80's. We have a canopy to have over our heads. I soooo thankful. Will let you know how I survive being outside all afternoon. No time to write further tonight.

Wednesday, June 22, 2011

10 Things "NOT" To Say To Someone Who Has Fibromyalgia

The following was written by my Fibromyalgia friend, Pam Ryan. Those with Fibromyalgia and Chronic Fatigue Syndrome will nod their head in agreement and a well-known understanding. Those who do not understand, will be wiser.

by Pam Scott-Ryan on Wednesday, June 22, 2011

10. We all get more aches and pains as we get older.

The pain of fibromyalgia is much more severe than the normal aches and pains associated with aging. Little things that shouldn't hurt at all can be excruciatingly painful. Plus, most people develop FM long before they should be experiencing age-related aches and pains.

9. I think I have that, too – I'm always tired.

This statement shows a basic misunderstanding of the severity of the fatigue associated with FM. The fatigue of fibromyalgia is so much more than just being tired. It is an all-encompassing exhaustion. You are like someone pulled your plug, cutting of your source of power. It's kind of like taking the batteries out of the Energizer bunny.

8. My friend has fibromyalgia and still manages to work. Maybe you just need a job (hobby, etc.) to take your mind off the pain.

Translation – you must be lazy. The fact is, the severity of FM symptoms varies. Some people have fairly mild symptoms and are able to continue working. Some continue working longer than they probably should because they have no other choice, but they suffer tremendously. Others are so disabled they are confined to a wheelchair much of the time. While getting involved in a project can help to distract your mind from the pain for short periods of time, if you have a more severe case, it doesn't work well enough to allow you to consistently work a 40-hour week. And it doesn't help dispel the extreme fatigue that usually accompanies FM.

7. My doctor says fibromyalgia isn't a real disease; it's just a wastebasket diagnosis.

First of all, this doctor obviously hasn't kept up with the latest research, which clearly demonstrates that FM is a very real, physical disease. Also, to date the FDA has approved three medications to treat fibromyalgia and they generally don't approve medications for imaginary illnesses. There are a few doctors who will tell patients they have fibromyalgia if they can't figure out what is causing their symptoms and just want to get the patients off their back, but I have to question the ethics of a doctor who would do that.

6. If you got more sleep, you'd feel better.

Well, duh! One of the major problems with fibromyalgia is that something prevents the body from going into the deepest stage of sleep, when the body naturally restores and replenishes itself. Even if you manage to stay asleep for several hours, you're most likely not going to awaken feeling refreshed. And most sleep medications do little to help you achieve that deep sleep. They may help you get more hours of sleep, but probably will still not give you the deep sleep you need.

5. I read about this new product that cures fibromyalgia.

This can be one of the toughest comments to deal with because it is usually said by well-meaning friends or relatives who genuinely want you to feel better. The products are frequently some kind of “natural” supplement being sold through a multi-level marketing plan and are very expensive. If those making the suggestions are casual acquaintances, I generally just tell them I appreciate their concern and will look into the product. However, if it's someone closer to me who is likely to keep asking if I've tried the product, I go on to explain that there are dozens of products out there claiming to cure or at least improve FM and I just can't afford to try them all. Read Let the Buyer Beware for tips on how to evaluate product claims.

4. At least it's not fatal.

My first thought in response to this comment is always, “Yeah, but sometimes I wish it was. At least then I'd know there was an end to the pain.” I rarely say that, though. Of course I'm glad it's not fatal. But that doesn't help reduce the level of my pain or the depth of my fatigue. Nor does it help to raise research funding or bring attention to the needs of FM patients. Understandably, people tend to be more interested in preventing death than in improving the quality of life. Maybe I should start actually saying what I'm thinking when someone makes this comment. At least it might get their attention.

3. You just need to exercise more.

Often this is another way of insinuating that you're lazy. This comment in particular has always bugged me. Perhaps it's because I used to be a dancer and aerobics instructor. If more exercise were the answer, I'd be all over it. Yes, exercise is an important component of any fibromyalgia treatment plan, but it's only one part and it has to be approached slowly and carefully to avoid triggering a flare. Read Fibromyalgia and Exercise for more information on how to incorporate exercise into your FM treatment plan.

2. But you don't look sick.

This comment puts the FM patient between the proverbial rock and hard place. If we let ourselves go and show how we actually feel, people are uncomfortable and don't want to be around us. On the other hand, if we manage to fix ourselves up and put on a brave face, no one realizes we're sick. If you think about it, most chronic illnesses are invisible. My dad had heart disease but looked great until the moment he died from a massive heart attack. My mom had pancreatic cancer but looked fine. She didn't even know anything was wrong until it was too far gone to treat. She didn't “look sick” until the last couple of weeks of her life when she was confined to bed. Just because someone doesn't have visible sores or a crippling deformity doesn't mean there's not a serious illness just under the surface.

Ta Daaa...... Here it is - the number one thing you should NOT say to a fibromyalgia patient:

1. It's all in your head.

This is the all-time worst and most insulting thing you can say to someone with fibromyalgia. I used to launch into an explanation of how FM is a very real physical illness, complete with symptoms, etc. Now I simply say, “You're right, it is in my head. Researchers have found that there is a problem with how my brain processes pain signals.” Enough said."

I hope this article allows you to think before you comment. Fibromyalgia and Chronic Fatigue Syndrome are real diseases. Although the person looks like there is nothing wrong, if you watch, you will notice how they gingerly stand from a sitting position or lower themselves into a chair. You will notice periodically that they substitute a word for another. Their cognitive process works as if the electricity can't get through the line without interruption. Their balance is not as good as it once was. They have trouble lifting a ten pound bag of potatoes. They are always physically and mentally tired. Be observant of your friends with Chronic Diseases, including Fibromyalgia and Chronic Fatigue Syndrome. Your friendship with be better for it.

You can .... be of help to those with Chronic Diseases, ask how

You can .... explain your Chronic symptoms to your friends. If you are like me, you will cry while explaining.

You can .... take a nap today .... do it!

Tuesday, June 21, 2011

Sunny Day

I had a good day today. The sun shinned all day. The temperature reached 76 degrees with a slight breeze. My cousin Tim and family were staying in the park. We had a last visit before they headed home. I accomplished chores this morning and took a nap this afternoon before working in the park this evening.

Our grandson Josh spent two days with us. Josh and Dwain cooked a yummy meal with dutch ovens. We had pork roast and potatoes with peach cobbler for dessert. I'm sure his favorite activity was fishing! He caught several trout. The coming weekend will find us in Pendleton, Oregon at Josh's All Star Baseball games. Can't wait!!!

Before beginning my post today, I read comments left on my Fibromyalgia Blog. I am disappointed that individuals choose to post advertisement on my blog for prescription medication without permission. I am asking those individuals to cease their advertisement.

You can .... see the best in everyone

You can .... take time to enjoy the sunshine

You can .... sweeten your ice tea, if you must

Sunday, June 12, 2011

A Nice Day

We have had two days off. I've accomplished a little. Mostly, I've rested. Dwain was gone Saturday until mid-afternoon. He watched our grandson, Patrick's shooting competition. I wanted to go, but I felt like I needed to stay home. Between working in the park and going to baseball games, I can't keep up my housework, I'm exhausted. This month's park duties are lighter, so I'm hoping each day I will work my way out of this flare.

Saturday afternoon a high school classmate came by for a visit. While he was here, my Aunt stopped by. Both were good visits.

Today, was an easy-going day. Dwain fixed a yummy pot roast in the dutch oven for dinner. As I write, we are sitting next to a nice campfire. Dwain is off to get a hot dog! Myself, I'm waiting for the wood to burn down to fix a smore!!!

You can .... take time to visit with your spouse.

You can .... stretch your muscles multiple times a day.

You can .... smile often, it's better than frowning.

Wednesday, June 8, 2011

I'm Healing

My body is healing from exerting it the last few weeks. We have a lighter schedule in the park this month. Our supervisor has been kind to me, even though she doesn't know it. :-D

My combination washer and dryer quit a couple of days ago. Dwain thought it was the heating element and we ordered one. Come to find out, it was a wiring problem. I have been using the machine since it was fixed!

Our Lucy is in training not to bark when someone knocks on our door. She is showing improvement. She has an appointment with the Vet next week to update her shots...rabies, etc

You Can .... allow yourself to rest when your body needs the rest.

You Can .... remember to prepare part of your dinner meal in the morning.

You Can .... help one in need.