Deb's Fibromyalgia Blog

A Note From Dwain

2013-01-30T20:55:00.001-08:00

Hi, I am Debbie's husband, Dwain.

Some of you have asked how I, as the spouse of a person with Fibro copes with it all. I think its because I am very patient with regard to my wife. I am also the type of person who keeps comments to myself, MOST of the time. I am human too so I will vent but I usually control it. The only piece of advice my father-in-law gave me the day we were married was "make no assumptions." That has been a valuable piece of advice. Another thing about me is that I am not judgemental about what other people do, say, like, or, whatever. Again this is most of the time. I think that all these things together help me deal with my wife's situation.

With regard to considering what Deb is doing to deal with her pain and discomfort from Fibro, I ask myself if I were uncomfortable, what would I do about it. The answer is "what ever makes me feel better." I don't always agree with some of the things she tries, but if she says they may help her feel better, who am I to say they don't. Deb takes a lot of pills, all of them prescribed by her doctor. I once swallowed her morning doses when the cups that she puts our medications in were reversed and I was in a hurry to get to work. Those pills knocked me out for a full day. If she needs meds that are that powerful to get through her day, I guess I can back off a little.

Deb is a very strong willed person, you might call it stubborn. She has her way of doing things and isn't always flexible about changes. Our forty years of marriage has taught us both how to deal with that, and it sums up in that we are both patient and tolerant of our personal traits.

Down But Not Out

2013-01-30T20:35:00.000-08:00

It has been since mid-June, 2012 that I posted on my blog. It seems like an eternity. I thought about posting often. But my sense of duty to the RV park we were managing, overwhelmed me. My Type A personality kicked into full gear and that is all I did. The little angel on my right shoulder kept saying, "Slow down, you will have a flare from hell." The little devil on my left shoulder said, "You have so many things yet to accomplish. Don't stop to rest or you will never get it all done." So I pushed myself until I had to sit down. I never rested long. When the summer season was over, I felt true relief. There were many things I did not complete, feeling like I wasn't doing a good job. Fibromyalgia is a little like the devil on my left shoulder. He is always pushing, never surrendering. He is a formative foe.

We left Wallowa and the RV park the end of September headed for Vancouver, Washington. Now to have time with Adam, Carrie and Granddaughter, Lyla. During our stay, our truck was stolen from a JC Penney's parking lot. We eventually got the truck back, minus contents. We were pleased the thieves did not hurt the truck except a broken window, the locks and ignition were damaged and needed replaced. Besides the contents, they took our 5th wheel hitch and extra gas tank/tool box. Our insurance company worked to get us back in business. Could not pull the 5th wheel without a truck. :-(

Mid-December, we drove to the coast to prepare for Christmas and family arrivals. After the first of the year we headed south, which brings us to today.

My Fibromyalgia symptoms have increased through the stress of working at the RV park and the loss of our truck. I realized that I put the stress of the park on myself. I had a choice. I felt I needed to complete everything that needed to be done. In actuality, I was only expected to do what I could. I felt a lot of guilt about the loss of the truck because I was the one driving it on the day it was stolen. I had done everything right, but....

We are now in Quartzsite, Arizona, soaking up warm rays of sunshine. It has been cold at night, but blue sky and warm daily. I am also catching up with chores that need to be done. I'm slow, but that's ok. I took two naps today. I think I'm going to be fine. :-D

I read the comments since my last post and promise to address them asap.

Yes, I Can ... work on not putting stress upon myself.

Yes, I Can ... enjoy this time in Arizona as a vacation and relax

2012-06-14T23:32:00.000-07:00

I wish I could find the time to write. I miss writing. Writing is like talking to a friend. My emotions and the happenings of my day dictate what I write and how I write.

Tonight, my thoughts are bouncing from one thought to another. Not focusing.

We had interesting weather today. I woke up at 6:30 and it was near 70 degrees and blue sky. By dinner time it was raining, thunder and lightening.

We were planning to go to Josh's baseball game, but by 3:30 it was cancelled.

Heather and Matt will be traveling to Salem on Wednesday to spend time with Jeff. He graduates from high school the end of this week. Patrick and Josh will be staying with us. Better stock up on groceries to feed two teenage boys. :-D

I haven't been good at keeping up my journal, my home nor my duties in the RV park...I am failing miserably. This is not easy for a type A personality. Damn disease! I'm trying to be "OK" with the amount I do accomplish rather than frustrated with what I can not do. Wish me luck please!

Anonymous Comment

2012-05-13T22:20:00.000-07:00

I would like to share a comment I received on my last post. The first four comments were supportive. The last comment was the first negative reaction I have received.

"AnonymousMay 4, 2012 07:57 AM

'us fibromites'.... there's such a self-pitying group-y tone to all this. Oh, it must be really difficult for you if a page changes shape or colour...

I can understand why moving house or changing jobs might be difficult for people who are ill, but seriously? You need an adjustment period because a webpage changed? I think thinking of yourself as a 'fibromite' who can't cope with anything can't help you to get on with life."

Ms or Mr Anonymous, I would like you to know that you have ruffled my feathers. If you had said these words face to face with me, we would have been in a heated discussion. I can only assume that you are on a Fibromyalgia site because you either have Fibro or someone close to you does. I suggest if you are friends or family of someone who has this chronic disease, that you begin at the beginning and read through my blog. In the beginning, I list my Fibromyalgia symptoms. If you have Fibro, you may recognize similar symptoms and realize that you have a friend who understands. If you know someone with the disease, maybe you will be more sympathetic. You may realize that others have the same symptoms and she is not crazy or that they have a disease with the right to be "self-pitying" periodically. In case you have not noticed, this blog is about MY journey with Fibromyalgia. If you do not have a positive comment, please do not leave one. If you do not understand Fibro, I am wide open to field questions.

YES you can ..... be patient and kind, eliminating negativity.
YES you can ..... be sensitive to others.

Update (brain will not help with a clever title)

2012-04-23T22:44:00.002-07:00

So I sign into my blog and find out there is a new look. I hate change!!! I think it is because I must adjust. Adjusting is difficult for a Fibromite. I hope the adjustment period won't take long.

We have had beautiful weather the last few days. Thunder storms in the evenings. I enjoy the sound. :-D

Our Miss Lyla spent a week with us. We sure enjoyed her. She enjoys taking every minute of your day and I enjoyed being with her. I had to give up household duties, including fixing dinner, while she was here. I didn't have extra time. You can imagine how it stacked up around here. She is a delight and worth every minute.

My doctor ordered another round of antibiotics for my bladder infection. My intestinal track is sore, but the infection may be gone.

I started a weekly Bible Study on David. I think I will enjoy the lessons. I've met many new friends. Heather is also attending. It will be nice to spend an evening with her without husbands and kids.

The Park is coming along. The new owners arrived for a week.We are enjoying getting to know them.

I had a mini breakdown last week. The combination of over working my body and the stress of alot to accomplish in the park and in my home. Dwain didn't help much. He was having a rough couple of days too.

Hugs to everyone!

Yes you can ... learn how to use a new program.

Yes you can ... stand strong to up to the minute challenges

Winter is Not Over!

2012-04-03T21:44:00.004-07:00

"Winter Weather Advisory"

Gotta "cold" sound to it doesn't it? We are expecting four days of snow. I'm hoping that the forecast changes drastically...quickly. It was in the 20's last night. Today was warm. The snow-covered mountains are beautiful.

We are now managing an RV park in Wallowa, Oregon, located in NE Oregon. Lots to due before visitors arrive. More cleaning than I expected. So taking one step at a time. Dwain has the grounds looking good. If it snows hard, we may have a day off! :-D

My UTI is not clearing up. They sent my "sample" for culture. The nurse said she would call me on Monday, but has not. I will call her tomorrow morning. I gotta get rid of this nuisance. It's dragging me down.

Our granddaughter, Lyla, will arrive for five days on Sunday afternoon. Looking forward to our time together.

Our daughter, Heather, called tonight and invited me to attend a Women's Bible Study with her. I think I will enjoy the time together. The ladies are from different churches within Wallowa County and meet once a week.

My bed is calling. I hope everyone has a good sleep tonight.

Yes, I can ..... breathe deeply to help relax

Yes, I can ..... dress in layers to keep myself warm

Just Close Your Eyes

2012-04-02T22:52:00.011-07:00

I had a revelation about a month ago. Been practicing and found that the revelation WORKS!!!
Have I got your attention?

Fibromyalgia messes with my cognitive abilities. The symptom does not discriminate. It can intrude while I'm speaking, writing or while I'm trying to have a quiet moment, thinking. My mind will go blank while trying to think of the right word. I know the word I'm trying to say. I can tell you what letter it begins with. I can see the word written in my thought. I just can't get the word out of my mouth, on paper or in my thought.

When I was working for an attorney, I began to switch words while typing. The word I switched the most was "court." I would type "could" in place of "court." When you are doing a legal document, the word must be correct. You can't replace "court" with "could."

One day while talking with Dwain, I could not speak the word to complete my sentence. I closed my eyes and began to speak. I was able to complete the story. Each time I have difficulty conveying my words, I close my eyes and wha-la! I can complete the sentence. Although I am ecstatic to complete thoughts, I'm sure Dwain is happy too. This has been hard on his patience. He has learned to wait. However, once in awhile, he snaps at me to complete the sentence. So I know it is frustrating for him. I feel bad enough without his snaps. My self esteem lowers a notch.

Soooooo, if you have this Fibromyalgia symptom, try closing your eyes. I hope you can complete your story, your written word or your thoughts.

Yes, you can ..... complete your expression

Yes, you can ..... learn new technique,s no matter your age

Back in Wallowa

2012-03-28T21:57:00.007-07:00

Our time in Arizona is over for another year. I sure miss the warm sunshine. Today I got cold to the bone. Getting this cold messes with my Fibro. So, I'm in my recliner with my heating blanket on my back.

Our winter went by fast. We parked in a different area this year . Our neighbors were hard to get to know. If we return to the Yuma area, we will stay near our friends of years past. The desert was cooler this winter. The wind blew almost every day.

My Fibromyalgia has been difficult. I've had increased movement courtesy of my Restless Leg Syndrome. The scary feeling of Anxiety has increased daily. I'm still trying to talk myself down, but it is getting more difficult. I had a UTI (Urinary Tract Infection) on our way home from Arizona. It's been almost a week since I've taken the last of my medication. I'm not having symptoms, so hope the infection is totally gone. In the beginning, I had the usual UTI symptoms. I also had increased Fibro pain through my hips and upper legs. I had a hard time dealing with the pain but after three days the increased pain was gone.

Dwain and I have taken a summer job. Wish me luck! I'm hoping once we have been here for a couple of weeks, we will be ready for the public. We are managing an RV Park. There are 31 sites, so not too big. We have stayed in the Wallowa River RV Park many a summer. The owners live in Seattle, WA. Care takers are needed for the time they are not in the park. Which will be most of the summer.

Enough babbling.

My Position in Space

2012-03-11T19:45:00.005-07:00

I had a few boxes stacked in the kitchen. I thought they were out of my way. I was clearing the dishes from the table, turned left and Crash! Boom! And I tripped over the boxes. Of course they all tumbled with me. I'm ok, but bruised my left leg and strained the muscles on my upper left arm. I have trouble with the position in the space that I occupy. Usually it is because I do not think, I just go. This "little" problem has caused me any falls. My brain forgets to worry about where I'm going. I see this as an aspect of Fibro Fog.

We have had a nice three months in southern Arizona and California. We had more wind in Yuma than usual. A couple we graduated high school with, Tom and Marlys, joined us for a week. The four of us then traveled to Anzo-Borrego State Park in southern California. There is so much to see. I encourage everyone to visit this park. They have campgrounds as well as boondocking areas.

We have thoroughly enjoyed our time with Tom and Marlys. They are "good people." Marlys has a medical issue that requires her to take rests, so that helps me to rest myself. Tomorrow Dwain and Tom will be taking a hike in the park. They are hoping to see Big Horn Sheep. Marlys and I are going to the town of Julian. I understand there are unique shops with an apple theme. I hear their pies are to die for, so we will test that piece of information. :-D

Wednesday we will begin our trek north. We want to be in Wallowa by April 1st. We may take a day or two at Joshua Tree National Park before arriving in Apple Valley to visit friends. A nice amenity of receiving Social Security Disability is that campgrounds on government land are half price via my "Access Pass." We also enter the park for free. What a blessing. Living on a fixed income can be tough at times.

Yes you can ... renew old friendships

Yes you can ... enjoy camping with Fibromyalgia

2012-03-02T16:26:00.006-08:00

Enjoying our visit with high school friends. Yesterday we drove the "loop" of Yuma and pointed out locations we thought they would be interested in. We had lunch at Lute's, always an interesting experience. My stomach hurt as we were driving home. Iwent to bed early. It's ok today. I'm sure it was because I was in the backseat and Dwain had to hit the brakes hard several times.

Today the wind has been blowing 40 mph so it is an inside day. Got a few things done. It has been a relaxing day. We will have desert with Tom and Marlys.

I have cornish game hens in the oven and they smell good. mmmmm

My eyes have been feeling out of sorts this afternoon. They feel warm and are fuzzy. Gotta blink a couple times to clear the fuzzies. :-) Yes, Fibromyalgia can touch every part of your body.

I will be making changes to my blog page. I will enter widgets that I lost with Blogger's deletions. Also, my photographer husband, no longer sells his photography on Imagekind. We've decided to leave the photos for purchase on my blog.

Anxiety is Creeping into my Body

2012-02-28T09:54:00.002-08:00

High School classmates will be here late afternoon. Looking forward to their visit, but anxiety is increasing as my morning progresses. We live in a 37' Fifth Wheel and it is a mess. I'm having trouble knowing where to start to make it presentable. Others may think it is ok, but not me (My Type A Personality at work). I wish I could say it is ok not to have the dishes and floors done, toilet scrubbed, bed made, etc. And you ask "why is she on the computer? Just do it!!"

I needed to get the March monthly bills posted online so they could be paid on time. I had done all but two last night. While posting I could feel my anxiety kick up another notch. Decided to write about it here, hoping it will help slow me down. I keep hearing my oldest son's voice, "Talk yourself down Mom. You can handle this, just calm yourself." Until today I've been able to hear his voice and advice and calm down. Tears are flowing, sniffling. CRAP!!!! I better get off the computer and breathe.

I promise to tell the end of this story later.

It's evening and I survived my melt down. Our friends arrived. We had a good visit and shared dinner. Tomorrow we will take them sight seeing.

You may wonder why I entitled this post "Anxiety is Creeping into my Body." That is how I was feeling at the time. The feelings of emotion take a grip, my breathing becomes labored and the grip continues to become more intense. So I feel like I'm being smothered as it takes over my body.

Thank you for listening today.

Relaxing Day

2012-02-27T19:50:00.005-08:00

I had a nice day! Happy to be able to say that after the last few days.

We went into town early this morning to pick up my monthly prescriptions and got groceries. After returning to the desert, we went to visit a couple we met while playing music on Sundays. Dwain has been giving Pearl dulcimer lessons. I visited with her husband Roy. Nice folks, nearing 80. I dream of living to their age and wish I could be in as good of shape mentally and physically.

When we came home I did a few chores, laid down for about an hour. When I got up I had a snack and worked on a crossword puzzle. I didn't like the idea of fixing dinner, but we all know that dinner needed to be made. After dinner, I posted our March 1st bills to be paid. So...I was able to accomplish a few things, but the day was relaxed.

My shoulder muscles have been so tight. There is an advertisement for massage for $35 for an hour. I'm tempted to schedule an appointment.

Two high school classmates will arrive on Tuesday afternoon. Looking forward to their visit.

Oh! I wanted to mention that we have cooked two meals and one dessert in our solar oven. They all turned out yummy. Doing a roast tomorrow. :-D

So nice to write about happenings in my day and not be crabby.

Yes you can ... share your skills with neighbors

Yes you can ... have a relaxing dayR

2012-02-24T20:17:00.003-08:00

Thursday we purchased a solar oven, pots and pans included. We used it today, baking a torte, then meat loaf and baked potatoes. The potatoes needed more time. The torte and meat loaf were good. Because you cook outside, it keeps the house cooler. We spend the summer in eastern Oregon and the sun shines nicely while we are there. We grill often in the summer, so this will give us a variety. My Fibro appreciates not having added heat in my house by late afternoon.

It was another warm day, but we had 20 mph winds, which made the heat tolerable. My pain level this afternoon and evening has been a 7. Assuming because of two busy days in town and the heat. It is interesting to me where the pain jabs show up and how they often feel different. I'm out of Tramadol. I needed two of my prescriptions transferred from another pharmacy. Walmart will not take a request for a transfer over the telephone. You must bring the bottles in. Intellectually, I know there is a good reason. BUT, my pea-brain wants it handled over the phone so I don't need to go into town until I pick them up. I believe I have more situations since my Fibromyalgia came to stay that frustrate me. Walmart only wants to protect me, NOT piss me off.

I miss my kids while we are in Arizona. I appreciate living in an era that I can talk to them by phone, email and Facebook. I have three children. Seth and Heather are our first born (and second born). Yes, they are twins. They are 36. Adam, my baby, is 33. Seth lives in Chicago. Heather lives in eastern Oregon in Wallowa and has two boys. Adam lives in Vancouver, Washington. He has a daughter, Lyla. I could not be more proud of the adults they have become.

WARNING!!! I'm Crabby Today

2012-02-23T14:22:00.004-08:00

A necessary evil while boondocking in the desert is going to the laundermat. We come to town once a week. On that day we try to accomplish as many errands as we can. As I write it is 81 outside and it feels like 90 inside. You know what happens when you try to do alot in one day. That's about the first piece of advice we give others.

We were going to purchase another solar panel, but the store owner talked Dwain out of that idea. Amazing to have a store owner talk you out of spending $400 in his establishment. So instead of saving the $400, he spent $369 on a solar oven and cooking pans. My husband has no will power...if there is $$$$, he must spend it. I hope you all pity me cause sometimes that's what I feel I need. :-D

My neck is about to fall off. I don't do well in this heat. I have neck tie cooler. I got it ready but left it on the kitchen table. As always my brain doesn't work causing brain fog.

A sad note of interest. Two helicopters collided, killing 7 Marines. This occured last evening in the hills behind where we are parked. When there is a loss of life like this, I want to go home.

On a happy note, a friend just called me. He is in Seattle. It was nice to visit with him.

Boy, I'm a crab...sorry

Yes you can ... try to keep a positive outlook. I failed today

Yes you can ... try to keep cool. I failed today

It's Hot!

2012-02-22T19:50:00.000-08:00

My morning went well. We went into Mexico. Did a little shopping. We both found a memento plus a bottle of booze each! We had Shrimp Tacos for lunch. Dwain had a mexican beer he enjoyed. I had a margarita that I enjoyed.

The temperature went up by noon. We had an 81 degree day. Once the heat hit, I melted and my pain increased. I had difficulty walking. Fatigue nailed me good. When that happens, my tummy feels sick. Once we got home, I layed back in my recliner. I feel I drank plenty of water. So frustrating when your body fails you.

You can ... put a smile on your face when you would rather not.

You can ... enjoy shrimp tacos!!

Are Your Physician and Medications OK?

2012-02-20T19:24:00.003-08:00

Are Your Medications Working For You?

Do You Have a Physician You Are Comfortable With?

I was fortunate to have my diagnosis of Fibromyalgia four months after my symptoms came to stay. I saw a Rheumotologist named Dr. Valentine. He was a hippie in appearance, long hair pulled back and Birkenstocks. Dr. V ran many tests. All were negative. He said it was important to rule out diseases that had similar symptoms. I received the Fibromyalgia diagnosis. He gave me a prescription for Trazodone, to help me sleep at night. He believed that you start one medication at a time, with the lowest dose. I am thankful for this practice. He would wait two weeks before adjusting the sleep medication and/or starting a new medication. The Trazodone worked well. I then was placed on Effexor XR, 75 Mg. There was a slight improvement. I was then placed on Effexor XR, 150 mg. A measurable improvement. Mind you, I was still in pain, but the measurable difference allowed me to be on my feet for a period of time.

Then without sickness, Dr. Valentine died. His office had names of physicians who treated Fibromyalgia and Chronic Fatigue but they were a hour drive from where I was living. There was a time of anxiety because I didn't know where I would go, would I be comfortable with the doctor, what if I couldn't drive for an hour then another hour back? My daughter called me in the middle of this worrisome time. She was working for a photographer and he had Fibro. She asked him for a doctor recommendation. This was an answer to my worries. Terri Russell is a Nurse Practitioner. She treated a hand-full of Fibro patients. I became comfortable with her. She added a blood pressure pill as the Effexor made my pressure increase. She also gave me Hydrocodone. I used it for break-through pain, but not daily. Flexeril is a muscle relaxant and I feel the difference if I run out. She also started me on Guaifenesin for the mega amounts of phlem I deal with. These medications worked well, with no side-effects. She also told me about Lysine because I had too many cold sores, which she told me was a Fibromyalgia symptom. I personally like Terri, but there were several situations that made me uncomfortable. I opted to look for another doctor.

I found two women doctors, in practice together, that treated Fibromyalgia. They have both treated me and I admire their type of practice. They started me on Neurotin, Tramadol and Amitriptlyn. The Amitiptlyn is for my Restless Leg Syndrome. Tramadol is for pain, which replaced my Hydrocodone. It is not a narcatic.

I feel fortunate that I have not had a reaction to the medications. After reading many blogs and talking with new friends on Facebook and Twitter, I understand that I'm a minority. Many suffer trying to find the right medication. I want to encourage you to find a physician you are comfortable with and to keep looking for the right medication. I believe that learning to listen to what your body is telling you, finding the right doctor and medication are all important to helping you live a better life.

Yes I can ... Advocate for yourself.

Chronic illness lowers our self esteem. We must work to be strong.

Yes I can ... Find a doctor who I can work with me for my health.

I'm in Arizona

2012-02-15T19:11:00.000-08:00

Hoping this to be the beginning of returning to my daily blog. My blog was turned upside down. The only way to find my blog was to search for it on the internet. I lost my photo and the list of the blogs I follow. Dwain was able to restore everything except my photo and my friends' blogs. I will be able to recreate both. Did anyone have trouble with Blogger changing their format? I hope not.

We are parked in southern Arizona in a place referred to Imperial Dam/Senator's Wash. This is BLM land and termed Long Time Visitors' Area (LTVA). You can stay two weeks in the LTVA for $40 or $180 for "the season" which is September to May. There is every type of RV here. They are parked every which way. The reason we return to this location is because of the quiet. We have made friends and participate in activities.

My Fibromyalgia is in check. We had a few 80 degree days where my Fibromyalgia symptoms increased. However, they were better by morning. One day a week we travel to Yuma, which is 20 miles south, to run errands. It is always a long day and I spend the evening in my recliner. Otherwise, while I'm home, I have been working on household chores. Also, compiling tax info. By doing these things, I'm able to break when my body tells me it needs rest. The chores I've been working on are ones that need to be done yearly. So, feeling accomplished. Dwain and I walked nearly 2 miles, which is a mile longer than I've ever done. My upper legs do not enjoy the last half mile, but I've done it! Proud of myself. I know it is good for me.

I hope everyone is having a nice day. Hugs

You can ... hear your body when it talks to you. Are you listening?

You can ... step out of your comfort zone. Have you lately?

I'M BACK!!!!

2012-01-22T17:59:00.000-08:00

Three months is a long time to be away from my blog. I thought about writing several times a day but could not muster the strength to put one more in my day.

Since my last post, we went to Vancouver, Washington to volunteer at Fort Vancouver Historical Site for the months of October, November and half of December. The pace as difficult, as we also had concentrated time with Adam, Carrie and Lyla. Miss Lyla is an amazing little women.

On December 13, we traveled to the Oregon Coast and stayed at Dwain's family homestead to prepare for our kids and grand kids to arrive for Christmas.Well, they arrived. We had lots of food and good times. Then they left. It took me the next week to undue every preparation I made. I gave Lucy a good haircut and I got a haircut too! On to Arizona...

We took a couple of days in Nevada at The Valley of Fire State Park. It's a great place to camp...quiet. Then on to Quartzsite, Arizona. Planning to be in Quartzsite through the end of January.

Since we arrived in Arizona, I have been sleeping 9 to 10 hours a night. I'm so thankful. I've also been able to rest when my body tells me during the day. The weather has been sunny (most days) and I remember why we come to Arizona. :-D

You can ..... recognize when to take care of your body ... just listen.

You can .....reach out to a friend for support.

2011-09-04T21:28:00.000-07:00

My Achilles Tendons have "yelled" at me all day. What those who do not have Fibromyalgia don't understand, is that because of Fibromyalgia, my pain is magnified. My abundance of Substance P seems to be working overtime. My next appointment with the Physical Therapist is Tuesday afternoon.

Dr. Emily put me on Tramodol 3x a day. I have not noticed a difference. I may need a higher dose.

We have had a quiet Sunday. I have done laundry, dishes and cooked meals. I did a lot of reorganization yesterday and cleaning. I feel good about what I accomplished.

We have nearly 160 sites in the park to clean tomorrow. Needless to say, not much will be accomplished at home. Dwain cooked a beef roast Saturday in the dutch oven. We have enough left over for hot beef sandwiches for dinner tomorrow.

You can .... smile in the face of pain.

You can .... forgive those who cannot understand Chronic Illness.
For we understand it is unseen.

Happy Labor Day Weekend!

2011-09-03T20:50:00.000-07:00

It's hard to believe we are in the month of September. There is approximately 3 months and a couple of weeks until Christmas!!!

Our schedule in the park has changed. We will be cleaning sites, five days a week through September 15. Our next destination is Wallowa for a week before heading to Fort Vancouver National Park.

I've had pain and a throbbing sensation with both of my Achilles Tendons for a couple of months. I spoke to my medical doctor and she arranged for me to receive Physical Therapy. I had my first appointment last week. He worked on relaxing my tendons and muscles. The Physical Therapist thinks my A. Tendons are painful because of a fall when I was 9 years old. A little hard to grasp the possibility. Here's a thought...could that fall from a barn hay loft, triggered my Fibromyalgia? I have another appointment on Tuesday.

I have good news from the medical doctor. My blood pressure was the best it has been in years and I had a clear pap. I need to call and schedule my Mammogram. Also an appointment for a test at OHSU. I have been having trouble with my hearing. This test will let us know if it is hearing or cognitive problem. I will have the test done while we are in Vancouver this fall.

I very much appreciate my readers taking the time to leave a comment about my post. However, if you are unable to empathize or leave a positive comment, please do not leave a post. I recently read a comment that was negative. Negativity is not what this blog is about. This blog is to help me and others converse about living with Fibromyalgia and other chronic diseases.

You can .... be positive when you don't feel positive.

You can .... make time to be with family and good friends.

You can .... share your day, warts and all, with those who have open ears.

A relaxful Saturday

2011-08-13T21:26:00.000-07:00

I have enjoyed my Saturday. Dwain and I are staying home this weekend. We are both in need of "down time."

Dwain played his Dulcimer almost all day. I did a couple loads of laundry, gave Lucy a haircut, around her face and washed the dishes. Boy do I miss my dishwasher! :-D

By 11:00 I was ready to lay down. I reclined in my chair and checked email and Facebook. By 1:00 I was in bed. I took an hour nap. Lucy woke me because she heard a dog barking outside. I laid back down and slept for another hour. We had a good fish dinner with a salad of carrots, apples and raisins. Also fresh peaches! I read after dinner. "You're Late Again Lord" by Karon Phillips Goodman is an interesting read about how we ask God for things then become impatient while we wait. We forget that we are on God's journey and how to use the waiting time. God always answers us, but it may not be as we anticipate. We must listen when God speaks to us.

Preseason Football has started. We have enjoyed a couple games today.

I didn't sleep well last night. Other than hard cramping in my legs this morning, my Fibromyalgia has enjoyed the slower pace of my day.

I will wait for a more productive day .... on God's timing.

You can ... use your time wisely while you wait for your prayers to be answered.

You can ... give yourself permission to enjoy a relaxful day.

You can ... be patient.

One Hour At A Time

2011-07-31T14:52:00.000-07:00

It's been over a month since my last post. What a full month I have had. In the process, I'm in one of the worst flares I have had. However, the memories I have, are priceless. I have felt miserable for almost a week and have this weekend to rest as much as possible. I sure hope tomorrow brings a better day.

When I over exert my body, multiple things happen....I sweat excessively, my Irritable Bowel Syndrome (IBS) kicks into full gear, my stomach gets sick, muscles cramp; become weak and my headache worsens. I suppose that is enough to list for now! To help ease symptoms, I must be in a reclined position, either in a recliner chair or bed. I take one-half of a Dramamine. Dramamine is an OTC medication for motion sickness and helps my upset tummy and Vertigo. If I take a whole tablet, I go to sleep. Sleep helps, but I can sleep without the additional medication.

I had a week off from my State Park duties. I played with my Granddaughter, Lyla, who is 2 1/2 years old. I spent Monday with Heather, traveling to Vancouver, Washington. It was a nice "Mommy and Me" day. We stayed with Adam, Carrie and Lyla for a couple of nights before picking Patrick up at the airport upon his return from visiting his Uncles, Seth and Steve in Chicago for two weeks. One more night all together, then we kidnapped Lyla for four days. While Lyla busied us all, we celebrated Grandson Josh's 13th birthday. By the time these activities were complete, I was a goner or maybe a groaner!! I've always said that it would be all worth the pain if I am able to participate. After this weekend, I may change my mind! For now, it's one hour at a time.

YOU CAN .... have humor when your body is betraying you.

YOU CAN .... accomplish a chore on the way to the bathroom.

All-Star Week!!!

2011-06-24T21:27:00.000-07:00

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.

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

2011-06-22T14:34:00.000-07:00

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.

"10 THINGS "NOT" TO SAY TO SOMEONE WHO HAS FIBROMYALGIA...
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!

Sunny Day

2011-06-21T21:07:00.000-07:00

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