Monday, September 28, 2009
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
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
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
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 danddrvtips.blogspot.com
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
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
"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.
And the second article:
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.
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.
My Own Fibromyalgia Pain Categories
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....)
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.
When my nerves are rattled, I try to get out of the situation as quickly as possible and relax, preferably somewhere quiet. "
Friday, September 11, 2009
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 note...my 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
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
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 http://invisibleillnessweek.com/?p=2301.
Tuesday, September 8, 2009
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
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
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. :-)