Monday, September 28, 2009

I'm Flaring and Thankful

I have been in a flare for two weeks. My body is racked with pain and fatigue. Depression set in two days ago. I started my "pity party" when the depression started, which makes sense doesn't it? I'm trying hard not to complain much as I don't want to become known as a winer. I just want to feel better NOW! I don't want Fibromyalgia and Chronic Fatigue!

I'm thankful for my husband who tries to understand these diseases.

I'm thankful for my kids and grandkids who try to understand too.

I'm thankful for my doctors who help me through this journey.

I'm thankful for the sunshine during fall as it is not hot, but warm.

I'm thankful for my my home as it is small and easier to care for.

I'm thankful for flowers as they lift my spirits.

I'm thankful for paychecks that keep us housed, clothed and fed.

I'm thankful for my computer as it keeps me connected to family and friends.

I'm thankful for nice warm showers.

I'm thankful for my recliner and bed as they provide relief.

I'm thankful for books & magazines as they provide good info and take me places.

I'm thankful for my seat in the truck and its heating element.

I'm thankful for my friends. They provide love, support, understand, laughter.

I'm thankful for the laughter as it comes from many sources.

I'm thankful for my full-time RV'g lifestyle as it is a slower pace.

My wrists are stiff so will sign off for now.

Saturday, September 26, 2009

Wallowa Junior High Cougars

The junior high football game was great fun! My biggest problem is I can't stay seated. Also I clap alot. "Happy Clapping" causes my hands to hurt. :D They are aching tonight. About the 3rd quarter, I needed a Vicodin. Between my hands, my tired and hurting legs and my poor head from the tension. This was a fun game. Our boys worked hard. They made 3 touch downs, but they called one back because of a penalty. The boys have 3 games this next week.

Had a good lunch at the truck stop just outside of LaGrande. We made a couple of stops on the way home, getting here about 4 pm.

Had a good fish dinner. I hated cooking dinner, but it was good. I'm sure many other women hate cooking dinner. My body is very tired and hurting more when it is time to cook dinner. I need to delegate.

Friday, September 25, 2009

Nice Day

Heather invited me to ride along with her to LaGrande. We had a nice day. We haven't had a "Mommy and Me" day for some time. We returned home about 4 pm. I put a load of clothes in the washer then sat down and read the paper. I needed "stretch-out" time in my recliner. The drive to LaGrande is an hour each way. I was in and out of the car and did alot of walking. My hips were screaming at me. Heather invited us for dinner. Matt BBQ'd elk steak. We had green salad, baked squash, baked potatoes with onions and french bread. All very good. After dinner I washed the dishes while Dwain played his harmonica and Patrick his guitar. Josh was on the keyboard. :0) Nice evening too!

Saturday we will all go to North Powder, Oregon for a junior high football game. Both Patrick and Joshua play. It's a three hour round trip to North Powder. The game is only an hour. A second day in the car may require pain medication. I always carry a couple of tablets with me so will be prepared.

Periodically today I was light headed. I'm sure it had to do with over working my body. Time for bed...

Wednesday, September 23, 2009

Hot Day in the Wallowa Valley

Another hot day in the Wallowa Valley. Heat is not my friend. :(

Dwain is putting a new seal on the gray tank and repaired a crack on the black tank. It's a HUGE undertaking and will take all day. He hopes to complete the project today. I hope so to. Right now we can't use the water in our our RV. It's inconvenient, but the seal and repairing the crack are important. It is against the law for the tanks to leak, plus the sanitary issue. If you are interested, Dwain blogs about RV tips at

I'm trying to rest for a few days due to a flare. However, there are things to be done. We are watching the RV park were we stay for a week. The owners will be back Thursday evening. Saturday night was hectic, but the rest of the week has been fine.

Our New Zealand friends continued on their journey around the United States. They were fun to get to know. We will keep in touch through email.

Had a nice phone visit with Seth last night. All's well in Chicago. I'm looking forward to having him home for Christmas. Our visit are never long enough for me.

Monday, September 21, 2009


It is 4:50 am and I'm awake! :(

I haven't had time awake in the middle of the night for some time. I take Trazodone to help me sleep. It works great. However, if I wake in the night and my brain begins working, I'm
d-o-n-e! I laid awake for 1.5 hours, shifting, stretching, with my brain running wild. Finally got up, fixed a cup of cocoa and opened my computer.

It's been a week or so since my last entry. In that time I've had a virus, company from out of town, grandsons Patrick and Joshua's junior high football games, my birthday, had a Chiropractic appointment, caring for our daughter's family animals for the weekend and we are watching the campground for the owners while they have a week holiday. Needless to say my FM is screaming at me. We are going to town today for errands in the am, but planning a quiet afternoon which involves a nap. :D I had a 1.5 hour nap yesterday. It was wonderful and prepared me for the evening.

We have a couple from New Zealand parked in the site next to us. They are fun " blokes." We have had fun visits and had dinner with them last night. Each visitor to our campground brings a new and interesting twist to our lives. We have been enriched by our full-time RV'g experience.

Going to try to get a little more sleep.

Sunday, September 13, 2009

There is a Name to My Pain

To follow are articles written by Adrienne Dellwo on I knew I had sensitivities to light, sound, too many people in a room, talking and moving all at once. I had no idea until I read this article that the sensitivities had a name. It is Allodynia Pain. Enjoy Adrienne's articles. Go to and sign up for her email newsletter. I gain information from her writings. I have added my comments below.

"This type of fibromyalgia pain is extremely common in us, but it's one of the harder ones for other people to understand. That's because, by definition, things that cause allodynia shouldn't hurt. That's right -- allodynia is "pain from stimulus that usually doesn't cause pain." Examples: flashing lights, repetitive sounds, visual "chaos," confusion. How do those cause pain? I don't know, but trust me: they do. And I'm not talking headaches, like you might expect from light and sound. For me, these things cause pain to rip through my abdomen. I know, it's weird. Allodynia comes in several forms, and those of us with fibromyalgia can have any combination of them. The examples above are the basic form. There's also:

  • Tactile allodynia. Pain from touch/light pressure, such as from a waistband or bra strap.
  • Mehanical allodynia. Pain from motion across the skin, such as light massage or the brush of fabric.
  • Thermal allodynia. Pain from heat or cold that's not severe enough to damage tissues. I.e., cold feet may feel intense, sharp pain.
Allodynia's not terribly well researched or understood. Some drugs are clinically shown to help, as are some pain creams. See the allodynia section in 7 Types of Fibromyalgia Pain for more information on treatment options."

And the second article:

"Types of Fibromyalgia Pain

The first 3 types of fibromyalgia pain are medically defined:

Hyperalgesia Allodynia
Painful Paresthesia

The next 4 types are my own creation, which will be obvious by their names. I don't recommend using these terms in a doctor's office (unless you want to be seen as crazy), but these labels may help you get to know your body's quirks, triggers, patterns, etc.:

Knife in the Voodoo Doll
Randomly Roving Pain
Sparkler Burns
Rattled Nerves

First, the medically defined types of fibromyalgia pain.

Hyperalgesia & Fibromyalgia

"Hyper" means excess and "algesia" means pain. Hyperalgesia is the medical term for pain amplification in FMS. Our brains appear to take normal pain signals and "turn up the volume," making them more severe than they would normally be. Most of the drugs used for managing FMS pain are aimed, at least in part, at reducing hyperalgesia.

Allodynia & Fibromyalgia

A symptom that perplexes a lot of us, especially when it's new, is allodynia. That's what it's called when your skin hurts to the touch, and when mild pressure from clothing or gentle massage causes pain. A lot people describe allodynia as similar to a bad sunburn. Allodynia is a fairly rare type of pain -- other than FMS, it's only associated with a handful of conditions, including neuropathy, postherpetic neuralgia (shingles) and migraine. Allodynia is believed to be a hypersensitive reaction that may result from the central sensitization associated with FMS. The pain signals originate with specialized nerves, called nociceptors, that sense information about things like temperature and painful stimuli right from the skin.

Allodyniacomes in 3 forms:
Tactile, which is pain from touch or gentle pressure
Mechanical, which is from something moving across your skin
Thermal, which is pain from heat or cold that's not severe enough to damage tissues

Some drugs that work for some people with allodynia include:

Some people also get relief from topical pain creams (capsaicin, Tiger Balm, Aspercreme, BioFreeze). Paying close attention to the way you dress can help alleviate allodynia as well. If you have allodynia, massage therapy may make it worse. If you feel other aspects of your health would benefit from massage, be sure to discuss allodynia with your doctor and massage therapist and keep track of how treatments impact this symptom.

Painful Paresthesia & Fibromyalgia

Paresthesias are odd nerve sensations that can feel like crawling, tingling, burning, itching or numbness. Sometimes, these sensations can be painful. Paresthsias are also associated with peripheral neuropathy, chemotherapy drugs, multiple sclerosis and migraine. Many common FMS treatments can help alleviate paresthesia-related pain, including selective serotonin reuptake inhibitors (SSRIs) and serotonin norepinephrine reuptake inhibitors (SNRIs). Some people also have good luck with vitamin B12, capsaicin cream, massage and acupuncture.

My Own Fibromyalgia Pain Categories

Once again, the following categories are not medically recognized -- they're things I came up with to fill a gap in how we classify different types of pain. They're intended to help you track symptoms, gauge effectiveness of treatments, and to let you know you're not alone.

Knife in the Voodoo Doll

Sometimes, out of nowhere, I'll get an intense stabbing pain that seems to cut through my body. I've also described this as a fireplace poker in the ribs or being impaled on a spear. For me, the voodoo doll pain is often my body's early warning system -- it tells me that I need to stop what I'm doing and rest. Other times, I have no idea why it strikes. I generally get this pain in my chest or abdomen, but some people say they get it in other parts of the body. It can be so intense that it can double me over and make it hurt to breathe. It usually goes away as after a few minutes. I have no idea how to prevent this type of pain, other than by pacing myself. (If only I could find that darned doll....)

Randomly Roving Pain

This is one of those things that reminds you FMS just doesn't make a lot of sense. A lot of us get pain that migrates around the body, sometimes moving between certain places, sometimes striking in new areas. If you also have myofascial pain syndrome, it can be especially hard to tell randomly roving pain from the referred pain caused by trigger points. For me, this pain responds to treatments about the same as hyperalgesia.

Sparkler Burns

One 4th of July, when I was young, I hung onto a sparkler for too long and some sparks hit my hand. They caused tiny pin-pricks of pain almost identical to sensations I now get regularly. They make me jump, and scratching them triggers tactile allodynia. These sensations usually just last a few seconds. I have no idea what triggers them or how to prevent them.

Rattled Nerves

Most people won't understand why I call this a type of pain, but I'm sure most fibromites will get it. Certain things tend to get my whole body on edge, jumpy, and feeling rattled. It makes me ache all over, and sometimes I get nauseous, dizzy and anxious. Things that rattle my nerves generally involve sensory or emotional overload, such as: Certain sounds (repetitive, loud, shrill, grating) Visual chaos (crowds, flashing lights, busy patterns) Stressful situations (busy traffic, confrontations, fibro-fog induced confusion or disorientation)

When my nerves are rattled, I try to get out of the situation as quickly as possible and relax, preferably somewhere quiet. "

Deb's Comments

My reaction to light causes me close my eyes until my eyes acclimate. Sunglasses help, but my eyes must still adjust to the light. Sounds with higher pitches hurt my head and ears. I find my shoulders drawing up to my ears. As my fatigue increases, sounds are more irritating.

Many people together in a small space, all talking and moving around create anxiety. I know they are having a great time and I want to enjoy them, but I must remove myself. Other times, sitting on the outside of the commotion works.

If plans change without my control, anxiety is immediate. When I'm exhausted, my Fibro Fog is very active and if I'm faced with making a decision, I can't. My husband understands and jumps in to make the decision, for which I am grateful.

I come from a family of huggers. We hug when we arrive and we hug when we leave. I remember being sad that by receiving a hug from family or friends that it hurt so bad. I informed them to be gentle, but it is difficult for them to understand or to remember. Once I was put on medication, the sensitivity was masked. Depending on the strength of the hug, I still feel the pain but I rate it at a 3 instead of a 10. I'm a happy girl with this sensitivity at this point. .the drugs are working. :D

Hot and cold sensitivities...what stinkers they are! I have the most trouble with hot weather days. My FM is in "red flag form" on hot days. I can bundle on cold days, but if the wind is blowing, I'm in trouble.

Sometimes I get goose bumps on my arms and legs for what seems like no reason. I'm not cold, no wind is blowing on me. The weather is not an issue. They do not hurt nor last long. My husband calls this sensation a "cold snap."

I'd enjoy hearing from others about their symptoms. I realized early on that by support from FM/CF sufferers, I learn that something I'm experiencing, is actually a FM/CF symptom, especially if it is not a commonly talked about symptom. An example of this is when I complained about having alot of phlegm. I now know this can be a Fibromyalgia symptom. I'm having flu symptoms in the form of aches, back of the throat swelling and additional Fibromyalgia pain. Hoping for a better day tomorrow.

Friday, September 11, 2009

A Memorable Day

What a memorable day for me. Not only is it a day to remember the September 11th tragedies, but also the day my Mom passed on in 1995.

My heart breaks every time the 9-11 events come to my mind, which is daily. The destruction a few caused to so many people and their families and friends. I pray the cruelty can come to an end in my life time. I don't have much time left so they better hurry.

It's been 14 years since my Mom passed on. Doesn't seem like that long ago. I stayed with her on her last night and she passed away around 7:30 am. She had Alzheimers and was in a care facility in Forest Grove, Oregon. It was a hard drive back to Astoria that day. Once I got a quick shower, Dwain, Heather and I drove to Tillamook to meet with my Dad and brothers to make funeral arrangements. That was our first time to be involved in the arrangement process..WOW, that was tuff.

On a happier grandsons Patrick and Joshua will have their first jr. high football game of the season on Saturday. Patrick will be the QB and Joshua will be a wide receiver. I figure it will be like playing catch in the back yard! :D

Thursday, September 10, 2009

Tuff Day

Today has been a tuff day. I treaded this morning. After lunch I took a nice nap and was able to accomplish a few things. I've hurt more today.

I realized my mind was stressing over several situations I need to make decisions on and a few chores I wanted to accomplish. Probably why I was hurting more. I tried to let the stressors go, but they kept creeping back.

Watched opening night of NFL football. Great game!

Wednesday, September 9, 2009

30 Things About My Invisible Illness You May Not Know

This has been going around. I thought I would benefit from completing the questions as much as others would benefit from reading.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is: Fibromyalgia and Chronic Fatigue

2. I was diagnosed with it in the year: 2001

3. But I had symptoms since: Most of my life, although they showed up more intense in 1995 and stayed.

4. The biggest adjustment I’ve had to make is: Accepting my limitations.

5. Most people assume: I feel well because I'm on my feet. Also they say I sound well when I talk. I should've been an actress!

6. The hardest part about mornings are: First working out the stiffness by stretching and moving. Then trying to think WHAT to fix for breakfast. I wish I didn't have to worry about it. But I must eat before taking my medication.

7. My favorite medical TV show is: House

8. A gadget I couldn’t live without is: My computer is my connection to family and friends.

9. The hardest part about nights are: When I am awaken and can't get back to sleep. The next day I am more exhausted than usual and my Fibromyalgia pain level is increased

10. Each day I take 11 prescription pills. I also take 15 OTC pills a day. All of which I feel are important to getting through my day. This does not count pain medication I have for use when needed.

11. Regarding alternative treatments I: Am open. I appreciate my chiropractic treatments and have had massage. Would like to try Acupuncture.

12. If I had to choose between an invisible illness or visible I would choose: Visible so others would be more understanding...most people are visual and forget, because they can't see, that I am in constant pain from head to toe, literally.

13. Regarding working and career: I miss work. Never expected I would say that. I felt like I did my job and related to people well. For the most part I felt accomplished.

14. People would be surprised to know: That I am on Social Security Disability (SSD). I'm not proud that I can't work. But appreciate being able to receive SSD to help with expenses.

15. The hardest thing to accept about my new reality has been: That I have a new reality. That my life has changed drastically.

16. Something I never thought I could do with my illness that I did was: Feeling as I do, I never thought I could push myself to accomplish what I do in a day. I would have expected I would lay myself down.

17. The commercials about my illness: I'm glad commercials are being made about FM. I wish there were more options for FM/CF sufferers and more information provided in the commercials.

18. Something I really miss doing since I was diagnosed is: Hiking. To even be able to go up slight inclines. To have stamina for the entire day.

19. It was really hard to have to give up: stamina

20. A new hobby I have taken up since my diagnosis is: Reading, blogging

21. If I could have one day of feeling normal again I would: Take my grandkids to Disneyland and be able to enjoy the whole day without fatigue and pain.

22. My illness has taught me: To enjoy small accomplishments and to appreciate the simple things in life.

23. Want to know a secret? One thing people say that gets under my skin is: "You look great, you must be feeling better." NOPE!

24. But I love it when people: Will sit and visit with me rather than insisting we need to go somewhere.

25. My favorite motto, scripture, quote that gets me through tough times is: Not coming to me right now...fibro fog!

26. When someone is diagnosed I’d like to tell them: It is important to have a good doctor who will direct you to the right medication. To know that communication with other FM and/or CF sufferers is an important support system.

27. Something that has surprised me about living with an illness is: How much time it consumes.

28. The nicest thing someone did for me when I wasn’t feeling well was: Make me a cup of tea. Tell me when I needed to rest when I was trying to push myself. He was taking care of me.

29. I’m involved with Invisible Illness Week because: I would like others to have a better understanding of invisible illnesses and to understand me a little better.

30. The fact that you read this list makes me feel: You are interested in what I have to say about my FM/CF

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

Tuesday, September 8, 2009

Trip is Over

We arrived in Wallowa this afternoon. Good to be here. Got several loads of "stuff" transferred from the "little house" to the "big house." Will finish tomorrow.

We had a great two weeks on the road. Only downer was my cousin Natalie's death. Although we will miss her daily, her pain is relieved and that is positive.

We took two days on our drive across the state of Oregon. We did not take the Fruit Loop, like I would have liked. Sometimes the driver takes "driver's privilege" and doesn't always stop when I would like to stop. Frustrating. We did discuss it. Now we will see what happens next time the situation arises. Accomplished several errands in the Portland area then traveled to Rufus. Rufus is our usual overnight stop. We park on Army Corps of Engineers land along the Columbia River Gorge. There was a kite boarder and many kite surfers. Colorful and fun to watch. Took photos, but have not downloaded yet. Had a great night sleep. Woke up, read for about 40 minutes then got up to start the day. Had breakfast then took my cup of tea and Dwain took his coffee and we walked along the river for awhile. Took a few photos.

Sunday, September 6, 2009

Sunday, Sunday, Sunday...Football, Football, Football

It's Sunday and football is on, BUT I'm not near a television! I enjoy following football. Always next week!

One think (thing...darn fibro fog!) FM/CF has taught me is to be ok when something doesn't work or pan-out...tomorrow is another day. Let it go and I WILL BE OK. Some days are harder than others to get that through my thick skull, but it has slowed me down to just go on rather than dwell on a frustration.

A thankful moment for Fibromyalgia and Chronic Fatigue? :-)

Saturday, September 5, 2009

I'm Back!

Well, a few days turned into 10 days!

We have had a busy ten days...class reunion, visiting friends and family and a death in our family.

Our 40th high school class reunion was great fun. NKN Class of 1969 rocks! We visited from breakfast through late evening. To sit and talk all day is exhausting. My legs were cramping and jumping. When I started getting dizzy and walking funny, I had to call it a day. So nice to see our high school friends. There are a handful I am in touch with regularly. But others, I haven't seen in 40 years! Most were heavier, have more gray hair or balding. Decided we want to meet in two years when we all turn 60 rather than wait the usual five years. Can't believe we are getting this old. There is an urgency about getting to this age, like you better hurry and do what you want to do. But there is also a calm and relaxing feeling, as you have led a good, full life. I'm proud of what Dwain and I have accomplished as a couple and individually. Many of our classmates are getting ready to retire. A few have already retired, like us. Most have grandchildren.

After the class reunion we stayed with friends in Seaside. Dwain took photos of Marie's dahlias. Beautiful colors. We were able to visit with mutual friends, John and Mary. The next day we stayed at Fort Stevens State Park. We had a wonderful dinner and visit with old neighbors, Gary and Kay and their kids, Rita and Tim. We will see Gary and Kay when we return to Arizona this winter.

Then we were off to spend two days with Adam, Carrie and Lyla. Between the warm weather, an 11 month old granddaughter and visiting...I was spent. But wouldn't change my time with them. It was the best! I was lucky to take two naps with Lyla. We were both happy to wake up smiling at each other. Two naps in one day!!! While there, received word that my cousin, Natalie, passed away from breast cancer. She was only 50 years old. Her battle was long. My heart is broken. I have 52 first cousins on my Dad's side of the family and Nat was our first loss of my generation. Instead of returning to Wallowa as planned, we turned our RV around and returned to the Oregon coast.

Thursday was a quiet day for us, which we needed. That evening Dwain's Dad and Lenora brought pizza for dinner...very good. Friday we attended an evening of music at the Garibaldi Fire Hall. Dennis played the violin and Dwain his harmonica. Today we picked up prescriptions and groceries. I attended my cousin Shannon's bridal shower. Sunday is a family gathering at cousins, Steve and Genene's. Always a good time. The time with family helps the healing of loosing Natalie.

On Monday we will start our journey back to Wallowa. Looking forward to seeing Matt, Heather, Patrick and Joshua. Patrick and Joshua are playing football. Excited to watch their games.

Also excited about getting back to my comfy chair. :-)