Sunday, December 13, 2009
May you have blessed days during this holiday season. Take care of you or you won't be able to take care of your little ones. Ask for help even when you think you don't need it. Find a friend or family member who will take your kids periodically so you can rest. An older child can watch the younger one so you can take a nap.
When you cook a meal, double it so you have another meal, that includes salad. If your kids are older, ask them to help with the meal. Making the salad, peeling spuds, and setting the table are a few things they can accomplish. Stop and read to your children, you both get to sit down. While you are sitting, talk about your decorations, Christmas tree, etc. That prolongs your sitting time and you will enjoy what the kids have to say. Older kids can do laundry. The little ones should be taking their own dirty clothes to your designated spot. Heck, you can fold while you are sitting.
If your kids are older, they can wrap the younger ones Christmas gifts and bake the holiday cookies. I know it is something you have always done, but let go of wanting everything to look perfect and LET them! They can all vacum and dust. No it may not be perfect..it's ok. My friend Kristen's son, Alex, loves to vacum. While he is vacuming, she is dusting. He of course being small, wanted to dust too. :D So, Alex dusts the mop boards while she does the furniture.Young children can also make their own beds and put away their clothes. There again, it will not be perfect, but as they grown it does get better. My kids folded the wash clothes and worked up to bath towels. I always redid them..stupid me!! Only redo if they won't fit on the shelf. Here again, they will get better. Depending on their age, little ones can put the silverware away from the dishwasher. My hope is that you can relinquish some of what you do and give them pride in helping.
Friday, December 4, 2009
I'm back! It's been since November 10th since my last post, nearly a month. I've missed being here. My computer has been in the shop and I were told it died. So I purchased a new one. Decided to try a Netbook. Interesting...will take awhile to get used to the keyboard. As a friend told me..they are missing keys! Feels like it as the keyboard is small. Because I have typed for 42 years, I know that I will get used to the feel.
During the last month we traveled to Wallowa so Dwain could go on a hunting trip with grandson, Patrick and Patrick's Dad. Patrick got a 5 point buck with a 25" horn spread. As his Dad said, "It was a buck of a lifetime." While they were hunting, I stayed with Heather and grandson, Joshua. We were able to stay through Thanksgiving and enjoy a few of the boys' basketball games. My computer was in the shop while we were gone. I tried to use Dwain's but could not figure out how to get to my Dashboard to post. I said I've been a typist, not a computer engineer.
While packing the truck to return to the coast, I feel backwards, landing soundly on my butt, which propelled my head backwards to the frozen, gravel driveway. It bounced (must be made of rubber) and hit the ground twice. Of course when you fall, your whole body tenses. Because I have FM, the pain of tightening the muscles is more intense and lasts for days. My neck muscles hurt so bad that to turn my head left and right was miserable. My rib cage felt like I had done 100 sit ups. My hips were miserable too. Tensing my arm muscles causes me to loose the strength in my arms. I don't have alot of arm strength to begin with. Had to be careful for fear I would drop things. My head had a hard achy feeling for several days. Not sure I didn't have a concussion. It was definitely bruised to the touch. Noticed that when I lay down or rest my head against my recliner or car seat, it would hurt worse, so often kept my head to the right or left, depending on my need. Trying to go to sleep was ok until I rolled over in my sleep..OUCH! Now been five days since the fall and started noticing feeling better yesterday. So sure it will progressively improve.
So will continue to dance in the rain, while waiting for my storms to pass. Or is that, I will continue to step on stones, one at a time?
Tuesday, November 10, 2009
I read a new blog tonight at http://dogmomdiva.blogspot.com.
Check it out when you have time.
Christmas has been on my mind for a week. I even purchased fun yarn for projects. I hope my hands will allow me to complete what my mind wants to do! While on Barbara's blog, I noticed she had a countdown clock 'til Christmas. I HAD TO HAVE IT!!!!! Take a look...
Off to visit my granddaughter Lyla tomorrow...I'm a happy Grandma!!
Monday, November 9, 2009
Iyanla Vanzant from her book, In The Meantime.
F - Friendly
I - Interesting
B - Bold
R - Reliable
O - One
M - MOM
Y - Yacker
A - Amicable
L - Listener
G - Grandma
I - Independent
A - Angel (This might be a stretch)
Can you use the word Fibromyalgia and list one-word, POSITIVE description of yourself? I thought this would be an easy exercise, but discovered it was not. 1) We don't always think of positive descriptions for ourselves and 2) I found the vowels more difficult than the consonants.
Give it a try...
Sunday, November 8, 2009
I have three kids. The two oldest are twins. Shortly after they were born, I joined a Mothers of Twins support group. Several months down the road, I attended my first convention. I got up at 3 am to be at the convention on time. I was exhausted. While at the luncheon, I looked around the room of approximately 300 MOMs (Mothers of Multiples). The thought entered my head, "I have twins who are small and I got up early. I wish they understood how tired I am." Immediately, a second thought, "they are Mothers of twins too and most of them got up early." We were in the same boat..all exhausted." What a relief to know that everyone of those ladies UNDERSTOOD ME! I sat up to the table with a new attitude. Sometimes all it takes is internal conversation with ones self to figure out life's situations.
I watch my attitude daily. On pity party days, depression hovers. I work hard to lose the depression. While Fibromyalgia pain is my constant companion, I try to watch how words flow from my mouth. Because of the pain, it is easy to have a strong attitude, which others don't appreciate, I'm sure.
Always think about your tone of words. Keep a sunny attitude.
Friday, November 6, 2009
Lots of rain and high winds yesterday. Today we had thunder, lightening, hail and a few brakes in the rain.
Still battling the flu virus. My voice is almost gone from all the "junk" on my vocal cords. My wind pipe makes strange sounds as I breathe. It even wakes me up at night. My body feels like its been sunburned on the outside and painful inside. Took my additional dose of Neurontin again today. Sure hope my insurance company will refill when I run out. They are particular about refilling prescriptions within a certain time period from the last refill. I did push myself to do a load of laundry because I was out of underwear!
Wednesday, November 4, 2009
Tuesday, November 3, 2009
Monday, November 2, 2009
Slept well last night but not long enough. Only five hours before the cough woke me up.
Had trouble with last nights post. Can't get the spacing correct. Even though I put the spacing in, it doesn't show up once I save and publish. I spent alot of time working on it then again this morning. Finally gave up and will see how this post does.
Sunday, November 1, 2009
Thursday, October 29, 2009
My hands ache without use. When I use them the pain increases and I'm afraid I will drop something.
My arms and leg muscles cramp mostly when I'm at rest in my recliner but a few times they cramped while I was walking.
My head always hurts, but the last few days it has increased. I've had headaches when my cycle was about to start.
Going to bed. Just wanted to point my frustration with increased Fibromyalgia pain.
Wednesday, October 28, 2009
- Slow down; you are not responsible for doing it all yourself, right now.
- Remember a happy, peaceful time in your past. Rest there. Each moment has richness that takes a lifetime to savor.
- Set your own pace. When someone is pushing you, its OK to tell them they're pushing and it's not good for you.
- Take nothing for granted; watch water flow, the corn grow, the leaves blow, your neighbor mow.
- Taste your food. It is to delight as well as to nourish.
- Notice the sun, the moon, and the stars as they rise and set. They are remarkable for their steady pattern of movement, not their speed. Watch and listen to the night sky.
- Quit planning how you're going to use what you know, learn, or possess. Gifts just are; be grateful and their purpose will be clear.
- When you talk with someone, don't think about what you'll say next. Thoughts will spring up naturally if you let them. If you are only thinking of your next word you will miss a blessing from that someone.
- Create a place in your home...at your work...in your mind...in your heart...where you can go for quiet and time to be lazy and unproductive. Rest isn't luxury; it's a necessity; it improves us."
Monday, October 26, 2009
Cold snaps are opposite of the usual burning sensation, which I also have. My experience with burning sensations have been decreased by medication. I still feel the burning, but it is not as intense.
Sunday, October 25, 2009
My Fibromyalgia pain has been in check today. I attribute that to the nice-paced day.
Saturday, October 24, 2009
Wednesday was another difficult sciatica day. Rested most of the morning then headed to Tillamook for lunch with Jacquie at the Blue Heron. We had a wonderful visit and lunch was good too. Jacquie then dropped me at Fred Meyers for grocery shopping. Getting through my list took longer than it should due to my back and my increased Fibromyalgia pain...I was shot. Dwain picked me up and we took the loop home. It was nice to see different scenery. Watched baseball in the evening.
Thursday we headed for Astoria to have lunch with a few other retirees from Oregon Department of Forestry. We were there for lunch but stayed until 4 pm. Great visit! We
stopped by Costco and Fred's before visiting with friends in Seaside. Another late night and to top it off the Angels beat the Yankees. :-(
Friday was a productive day. Wasn't expecting it to be productive after the busy, long days. I was able to take a nap in the late afternoon. We went to my Aunt and Uncles for an evening with family. Had great visits and another late night.
We stayed home today. I accomplished laundry, dishes, made banana bread, vacuumed and cleaned bathroom. Watched the U of O and OSU games. Disappointed the baseball game was rain delayed. I feel like my body is getting ready for a period. My hips and legs are aching hard along with other tender areas. The increased pain in my hips and legs are symptoms since my Fibro has been active. It's been two months since my last period.
Tuesday, October 20, 2009
I do feel accomplished in completing household chores, some of which are not daily chores ... working towards a winter house cleaning.
Enjoying the chase for the ALCS title. Feel sorry for the Angels, but the Yankees rule.
Dwain is working on shelves for cupboards in the RV. Looking forward to getting them installed.
Having lunch with my friend Jacquie on Wednesday. Looking forward to the time together.
I'm missing Patrick and Joshua. It's been three weeks since we left Wallowa.
Sunday, October 18, 2009
It's hard having Seth live so far from us. I know he has a good life and is happy. But I miss seeing his smile, hugging him and him hugging me. You know, when God gives us our children, they are in our home for much to short of a time. I know they are ready to leave us after 18 years, but are we ready for them to live a long distance from us? Seth has been on his own for over 16 years. He has gone through his education, jobs and relationships. He has touched many, many lives positively and excelled in his efforts. What more could a Mother want? Simply..to be nearer to this amazing man. If I had more $$, I would fly back to see him several times a year. I wish he could be more involved in the lives of his nephews and niece. I'm thankful they have phone and email contact and they know one another. They also have time during the Christmas holiday to spend together. Very fun to watch their interaction together. They so love each other.
Must move off this emotional writing. When I get emotional, my body rebells. My muscles tighten, my headache increases and my throat restricts, just to mention a few pain in the ass issues. The bottoms of my feet have been extra sore today. Wasn't on them alot yesterday. Just must be their day. :>)
Saturday, October 17, 2009
Carol and I have GREAT visits. We understand each other. We can talk for hours about our kids and grandkids. Because we went through high school together, we have mutual friends, know each others family and the area where we grew up, we can talk about anything and everything. We confide to each other and know the other will keep the confidence.
I am blessed to have her in my life and I often thank the Good Lord for seeing to it that we are connected. It's a double blessing that Dwain and Bill enjoy each others company too.
I worried about visiting Carol this afternoon only because the afternoons are harder fibro-wise for me. I almost changed the day to visit during a morning. I'm glad I didn't. We sat on Carol's comfortable couch with a hot cup of tea and visited. No up and down, nothing to figure out, just a laid-back visit.
Tonight I used the massager on my neck. Didn't seem to help. Shouldn't be surprised. It's human nature to try to fix it. Also an A personality trait..fix it.
Friday, October 16, 2009
Tried the "good nap" with heat on my neck and base of skull. Slept for one and a half hours. Helped for a couple of hours, then BAM! So off to bed
Thursday, October 15, 2009
Sunday, October 11, 2009
It was time to get out of the back seat of the car. The door would not open. Adam, from the driver's seat, tried to verbally tell me what to do. He tried different ways of telling me how to unlock the car door. My dots finally connected and I was able to exit from the car.
Even though I know I am not stupid, it makes me feel like I am or I have Alzheimer's. Similar situations have occurred with my other children and Dwain. I know this makes them frustrated and worried. How do you explain Fibrofog?
Dr. Mark Pellegrino gives several analogies:
"The Cluttered Hallway
Picture your brain as the upstairs of a house. In this house, the upstairs bedrooms are neat, organized and behind closed doors. The common hallway leading to each bedroom is cluttered with laundry baskets, piles of clothing, boxes, shoes, toys, and furniture. One has to navigate the clutter in order to access a bedroom, causing some delay in reaching the door.
The person trying to get into the bedroom is like the nerve signal trying to access a memory trace. The person (nerve signal) climbs the steps (spinal cord) up to the second floor (brain) and is standing in the common hallway (attention center). The egress to the bedroom door (memory) is slowed by all the clutter (neurochemical changes from fibromyalgia). Sometimes it seems to take forever to get to a door, and at other times the person can't remove all the clutter to open the door in a timely manner. This leads to either delayed processing, or inability to read the intended thought or memory.
Once one gets to the bedroom door and opens it, the room (memory) is in good order and can be accessed freely. In fibromyalgia, the bedrooms are neat. In dementia, the bedrooms would be in a disarray. ... .
Cable Access vs. Dial-Up
To those of you who are computer literate, a simple fibrofog analogy is like having dial-up internet service on your computer instead of cable access."
I have a hard time "letting go" as to how others see me when the fibrofog is clouding my thinking. I have a depressive moment before moving on. When this happens with my husband or children, I feel like they think I've lost it. I need to accept that fibrofog is a part of my Fibromyalgia illness. It is something I continue to work on.
Saturday, October 10, 2009
So...how often do we allow ourselves to think out of the box? I've been aware that I think out of my box more since my diagnosis of Fibromyalgia and Chronic Fatigue. I'm more aware because I've slowed down. I'm able to hear my thinking. Sometimes my thinking is clouded with fibro fog which slows me and I'm less creative out side the box. But I'm listening more. :D
I've also noticed that my "opinionated self" is softer. I believe this goes along with "out of the box." Since I'm not so "strong willed," I'm open to other ideas, thoughts.
Hey...having FM and CF has opened my world!
I'm sure we have all had these eye opening experiences since being diagnosed. Having to slow our game plan, has many benefits. We don't always think of FM or CF providing gifts. Don't you see, hear, feel more? Yes, we hurt more, but stop and think about your positive experiences.
Wednesday, October 7, 2009
Plan to back off my extra Neurotin tomorrow. Little nervous about it.
We will run errands tomorrow. Carrie will be home with Lyla.
Tuesday, October 6, 2009
We arrived at Adam, Carrie and Lyla's on Sunday afternoon. Have thoroughly enjoyed Miss Lyla. She is a strong willed child. She will be one year old on Sunday, October 11th. We are parked in their yard and plan to be here 'til the end of October.
Monday morning Carrie and Lyla came for a visit. I was so excited to have them here, I forgot to take my morning meds. Didn't realize I missed them 'til about 2:30. Took me awhile to figure out why I was feeling terrible. I took the meds and immediately got sick to my stomach. Felt rotten for the rest of the day.
Tuesday we had Lyla with us from 8 am 'til 8 pm. She was a delight. We will have her again on Wednesday.
I need to get laundry done and a major wash-down of the inside of the RV. Hoping Dwain will take care of the outside. He usually does.
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. :-)
Wednesday, August 26, 2009
Will be off line for several days.
Tuesday, August 25, 2009
On a side note...The doctor's office has not returned my refill ok to the pharmacy for my Neurotin. I left the refill at the pharmacy on Thurs. This is now Tues. The pharmacy will resend this am. Because it was not ready to pick up on Saturday, I've stretched what I had to get me through 'til Monday afternoon. Very disappointed when it wasn't ready. I had a couple in my purse that I keep with me so took those last night. I had one for this morning. However, I am to take two. So have been stretching this medication since Saturday. I will be glad to be back on my regular dose.
You are between a rock and a hard place, because the insurance company won't let you refill unless you are close to 30 days since the last refill. Then you need to wait for the doctor's office to ok it. Frustrating...
Monday, August 24, 2009
Sunday, August 23, 2009
Are my hands shaking and I don't realize it? I had tremors with my head and hands at one time, but they were infrequent and haven't realized for several months. Guess I better be aware of what my hands are doing when I spill. Are you visualizing this? Can our conscious be aware of what our hands are doing when we are carrying something? I think I'm going crazy! Don't we subconsciously
My balance is not good. Maybe writing IS therapeutic! Maybe it is my balance and not shaky hands. Crap! Now I need to remember to watch my hands and my balance.
My Fibromyalgia won't let me multi-task anymore, writing and thinking! And thinking about this is hurting my head. Bye...
Wednesday, August 19, 2009
I did fine this morning, but sure needed a lay-down time this afternoon and evening and unable to do so. Being home on Thursday will be a good catch-up day. I'll be able to have a nap. My head is hurting pretty bad tonight from over doing it. Also have the "creepy crawlies" big time. Sleep will help.
Off to bed now.
Sunday, August 16, 2009
The music was provided by Frank Carlson. Frank is located in Baker City, Oregon. There are samples of his music on his website at fcproductionsinc.com. Take a listen.
Saturday, August 15, 2009
Our friend, Debbie is turning 50 and there will be a potluck, live music and good fun. Looking forward to lots of laughter. I am thankful that the party is in the RV park where we are staying so I can run (interesting word!) home to rest or go to bed if needed. Not dependent on "WHEN" Dwain is ready to go. I am lucky as there hasn't been many times that I'm tired and need to go home and he is not ready. Think I'll keep him!
Hope everyone is having a good weekend.
Tuesday, August 11, 2009
The prescriptions I take are Effexor XR, Neurotin, Flexeril, Trazodone and Lisinopril. The Effexor raised my blood pressure. Dr. said she would rather put me on a blood pressure medication than try to take me off the Effexor.
The OTC items I take for FM are Guaifenesin, Zantac, Lysine and Citrucel.
I also take a multi vitamin, calcium, Evening Primrose, Asprin (81 mg).
They tell me that I'm on a good program. That this is as good as I will feel by taking these meds. I do feel much better than before I started the meds. But . . . I wish I would feel normal again rather than the new normal . . . know what I mean?
I have two zuchinnis to bake into bread in the morning. Adam, our youngest son and his family have a large garden and they have shared produce. Little Lyla, our 10 month old granddaughter has had a cough and that is getting better. Daughter, Heather and her son, Patrick, 13, are at Rodeo Bible Camp. Oldest son, Seth, lives in Chicago and we will see him over the Christmas holiday. Josh, 11, was here. We did alot of talking today. I love what my grandsons share with me!
Monday, August 10, 2009
Sunday, August 9, 2009
Here is a poem written by Debbie Short, Hospice Nurse in Tillamook County, Oregon. Debbie shared this poem with our family the day before my Mother-in-Law passed away. We included her poem in Mom's funeral pamphlet. I thank you Deb, once again for sharing your heart.
Saturday, August 8, 2009
Because I have been dealing with Fibromyalgia continuously for 6 1/2 years, I have come to a place that when pity party thoughts enter my head, I dismiss them or replace with something I need to do. Depression would be easy to entertain if I didn't constantly work at being positive.
I try not to talk about my FM symptoms in a complaining manner. Who wants to listen to me complain every time I open my mouth. On the other hand, when I say I can't participate in something, I'm usually asked to explain why. I do not enjoy explaining my limitations. Reminds me what I am missing. There again, is a pity party comin' on...gotta work to bring positive thoughts into my life. Because I know when I can't participate and am accepting of the joy of watching.
Thursday, August 6, 2009
Check em out!
Monday, August 3, 2009
I rode into the fair activities with Josh and his Mom, our daughter, Heather this morning. They picked me up at 6:30 am. I take my AM Fibromyalgia medication after breakfast so took them with me. I planned to eat breakfast at the fairgrounds in the 4-H Snack Shack. Because of the different scheduling to my day, I forgot to take my meds. The day was heating up and my body was hurting so didn't identify it largely from no meds instead of the heat. I got home at 1 pm. Went to take my after lunch meds and realized my forgetfulness. Since my FM became a full-time nusiance, I've had trouble when my regular schedule is altered, remembering usual plans. When plans are changed my anxiety usually kicks in. I took the meds and laid down.
Anyone else have forgetfulness or anxiety when your schedule is altered? I'm sure they do.
Sunday, August 2, 2009
The weather was hot, but a nice breeze blew. I kept in the shade and did well. As expected, fatigue was a factor, but the heat wasn't as bad as it has been.
Back to the fairgrounds by 7 am and a full day of competition. This time Josh will be ridding.
Temps have been at 100 and expected to be the same today with possible thunder and lightening. I'm preparing myself to watch his events today and tomorrow. I have a fan/mister and hope that helps. The fan puts out alot of wind by itself. The grandstands are covered, for which I am equally thankful.
Saturday, August 1, 2009
I have another book to recommend. "The Fibromyalgia Help Book". The authors are I. Jon Russell, MD, Ph.D and Jenny Fransen, RN. This was the first FM book I acquired. I read it before I was diagnosed. When I went to the Rheumatologist, I told him I had read the book, thought I had FM and wanted to be checked for it. Of course, he ruffled a bit. No one likes to be "told" especially a doctor. But sometimes we are so desperate for a diagnosis, our research provides what we think is the answer. In my case, I fit the information. I needed a doctor to confirm my suspicion and help me. Help me he did. Dr. Valentine practiced in Astoria, Oregon. To my sadness, he passed away four months after my diagnosis. He got me on medication and a good start to feeling better. I wish I could have learned more from him.
Friday, July 24, 2009
Tuesday, July 21, 2009
The price of the testing was $30, which I thought was reasonable. He put the back of my hand in the palm of his hand and asked me to match his resistance. When I could not, it showed I was weak in the area being tested. He tested me for metals, chemicals and bacteria. I tested positive for metals and bacteria. He said the metals could be from my teeth fillings.
He also checked my organs. Just about every organ was sluggish. I would describe it like a filter that was plugged. He said once the metals and bacteria were removed, the organs will work at a higher level.
He also checked for food allergies. I show signs of allergies to wheat, oats, eggs and milk. I was to stay off of these foods plus sugar. The sugar feeds the bacteria and keeps it in my system. I had to stay off natural sugar as well as refined. That's hard with all the yummy fruits in season.
I went back to Dr. John in a week. I had lost 10 lbs. The bacteria and metals had cleared from my system and my organs showed improvement on their working abilities. However, I did not feel better. He allowed me to start eating natural sugar...yah...fruit! When I return to Wallowa he may start reintegrating the foods I tested positive for allergies, one at a time.
I did well for the second week. But the week of the family reunion (week 3) I could not keep up the multi-tasking of getting ready for the reunion and eating correctly. I was aware when I was eating something I should not, so ate smaller portions. I maintained my 10 lbs of weight until the 2 days after the reunion. I gained 3 lbs. So tomorrow (Wednesday), I will go back to resisting what is supposedly bad for me.
Dr. John did put me on supplements. 3x a day I take an enzyme for food digestion, 1/2 tablet of Iodine for my Thyroid, 1 Calcium, and Tuna Omega 3, 3x a day. He asked me to stop taking my Multivitamin and Calcium. He wants to test them for lead before I continue with the over the counter supplements. I will do that when I return to Wallowa County. Apparently OTC vitamins can be laden with filler, which can include lead.
Another question he asked was if I had scars, ones I would have needed stitches. I have one on my thumb and my episiotomy scar. He tests the scars to see if they are "active." This means if they had healed. My thumb was healed, but not the episiotomy. I have Wheat Germ Oil to apply to the scar each night. I have trouble remembering to apply the oil. I probably miss 2-3 nights a week. Interesting to me that my thumb scar was a surgery done about four years ago. The episiotomy is 35 years old!
Will keep you updated on this journey. If I ONLY loose weight, I'm still ahead. But wouldn't it be great if it helped my Fibro and Chronic Fatigue?
Monday, July 20, 2009
As I write, there is a pack of coyotes on the edge of the tree line. They are howling and running back and forth and are loud. Not here long, but they stirred up the neighborhood dogs.
I will write more about the nutritional program I previously mentioned later today or tomorrow.
Monday, July 13, 2009
My Fibro flare is getting better. Not sure if it is because of the program Dr. John has me on, it has run its course or the fact that we are on the NW Oregon coast. I always feel better here. Time will tell as we travel back to the east side of the state. Between the heat and elevation, I have more health issues there. When I return, if my body hurts more, then I know it is the weather here.
We are preparing for a family reunion this weekend. Dwain's Aunt and cousin arrived today to help. We had a great visit tonight.
Monday, July 6, 2009
Create a weekly or monthly meal planner. Then remember to take what you need from the freezer right after breakfast. When I remember in the afternoon that I didn't get whatever from the freezer, it's usually too late for that meal plan. Then anxiety sets in...you get the picture.
When you cook a meal, prepare extra to freeze for another meal. Prepare whatever you can towards the meal at your best time of the day. Mine is the morning.
Invest in ANY gadget that makes your day easier, whether it's an electric can opener, lift chair, lap top computer, cushioned mat for your floor or an electric lap blanket to name a few. I get cold and can't get warm. My husband, Dwain, calls it a "cold snap." Doesn't take long for the blanket to do it's job. If you are relaxing on the bed, couch or chair, reading or watching TV then you are multi-tasking. WOW...didn't think you could do that anymore did ya?
It is difficult for me to lift my arms above my head. I have a very short haircut. Saves the arms when I shampoo and I no longer need a blow dryer or curling iron.
It's nice to have a recliner or a chair with an ottoman. I also recommend arms on your recliner or chair. You need a place to rest your arms, otherwise they are constantly tense.
When traveling, stop often to stretch EVERYTHING. I change my sitting positions often and it involves putting one foot or another up. My left uses the hump on the floor between the driver and passenger. My right will rest on a door pocket.
Exercise is helpful. Find what you enjoy.
Rest as you need to...don't put it off, you will only feel worse.
Find the simple joys in life :>)
Delegate, Delegate, Delegate!
Don't be afraid to ask for help
Try my suggestions or modify to fit your lifestyle.
It takes me about a half hour to prepare the inside of the RV for travel. However, that is pushing myself too far. Because of my Fibro, I start a couple days ahead of time, accomplishing a few things each day. I stand to gain, if I would practice this procedure in my daily life, not just at travel times.