Friday, December 31, 2010

Goodbye, 2010!

Honestly, where did this year go? And what do I have to show for it?

I've heard that after 50, time goes faster because it's all downhill. Such a negative phrase. In fact, I believe that negativity is one area where I've made some strides this year. Until this year, I never really realized how focused I was on negativity. A dear friend helped me to see this by encouraging me to focus on my blessings. And I do have SO many of those.

In a text titled, "The Return of the Prodigal Son", Henri Nouwen talks about gratitude as a discipline or a choice. "I can choose to be grateful even when my emotions and feelings are still steeped in hurt and resentment. It is amazing how many occasions present themselves in which I can choose gratitude instead of complaint. I can choose to be grateful when I am criticized, even when my heart responds in bitterness. I can choose to speak about goodness and beauty even when my inner eye still looks for someone to accuse or something to call ugly. I can choose to listen to the voices that forgive and to look at the faces that smile, even while I still hear words of revenge and see grimaces of hatred."

Let the word of Christ dwell in you richly; teach and admonish one another in all wisdom; and with gratitude in your hearts sing psalms, hymns, and spiritual songs to God. And whatever you do, in word or deed, do everything in the name of the Lord Jesus. Colossians 3: 16-17

I do feel as though I have come a long way in making this change this year. However, I still feel as though I need a transfusion of faith. I have let my relationship with my Lord dwindle away until I have no enthusiasm for it. I want to get it back and yet haven't had the energy or motivation to begin studying, reading, and thinking about this again.

Then, yesterday, my sister Connie told me about a Messianic vocal artist named Marty Goetz. He's been recording and writing for several years and I think I've heard of him . Long story short, I downloaded his album called Sanctuary from I Tunes and there it was...everything I was feeling....in a song titled "Breathe on Me."

The lyrics speak with such clarity on what I've been looking for:

Breathe on Me

The flame in my heart used to blaze with delight

But like sparks that rise into the skies, it vanished in the night

Now I long to once again

Burn for You as I did then

But to even try there’s something I must ask of You

I need You to...

Breathe on me, breathe on me

It’s been so long since the fire within

Burned bright and strong

Breathe on me, breathe on me

Like a gentle breeze, Lord I ask You please

To tenderly breathe on me

Blow, Spirit, blow

Come & fill this weary soul

In Your mercy send a holy wind and ‘til You do

I’ll wait for You to

Breathe on me, breathe on me

It’s been so long since the fire within

Burned bright and strong

Breathe on me, breathe on me

Like a gentle breeze, Lord I ask You please

Won’t You tenderly, breathe on me

It isn’t that I’ve lost my desire

It’s just that what once was a fire has dwindled again

And it needs to be kindled again, so

Breathe on me, breathe on me

It’s been so long since the fire within

Burned bright and strong

Breathe on me, breathe on me

Deep inside I know hiding embers glow

They could grow into a flame for all to see

If You’d only, if You’d only, if You’d only Breathe on Me

Words & Music by Marty Goetz & Wendell Burton

© 1988 Singin’ in the Reign Music/ASCAP - Cross Purpose Music

Monday, December 27, 2010


I can't believe it's been 26 days since I last posted. New Years resolution - post more often!

We awoke this morning to a beautiful, winter wonderland. The heavy fog from last night clung to the trees creating a beautiful frosting that sparkled as the sun came up. I put some pictures of our house and surrounds on my Facebook account. But here's one just to whet your appetite.

Yesterday, we had a wonderful time with oldest son and his spouse & family as we gathered for a gift exchange and brunch. It was great fun seeing them. We were especially appreciative this year, since they will soon be moving to Missouri and we will no longer have any grandchildren here in the state. As brunch was ending, I began having an excrutiating headache along with a stiff neck. I slept all afternoon, but by 7:00 pm, I could barely move without excrutiating pain.

After a conversation with First Nurse and a recommendation that we head to the ER, my favorite place to end the Christmas holidays (NOT!). The doctor there called it tortocolis (fancy name for stiff neck!). After a shot for inflammation and another one for muscle relaxer, we headed home, arriving about 9:30.

This morning I still have the lump on my neck and a sore throat. But I did feel well enough to drive to the drug store for additional medication for inflammation.

What can I say? it's not a holiday without a trip to the ER. Richard was so wonderful, bringing me pain pills and water, along with ice packs/heat, etc.

I'm really looking forward to a slow week this week, to catch up after the busy holiday.
Still have a little knitting to do for January birthdays. I'm currently working on fingerless mitts for our granddaughter, Elana. I hope they fit. I have one mitt done and another just started, but these mitts go very fast. The yarn, Debbie Bliss Cashmerino DK is incredibly soft lavender and works up beautifully! This yarn came from my stash, so yeah, I scored a stash reduction with this gift!

I'm also using Laines Due Nord's Royal Cashmere in a cream color to knit Plymouth's Cabled Cowl for myself. I really need to get this done, since it's a good hat/cowl combination to keep my neck covered in this cold weather.

My only dilemma is what to do with all those leftover Christmas cookies. What do you do with yours? Or perhaps you don't have that many left!

Wednesday, December 1, 2010

It's beginning to look......

Christmas knitting is in full progress. I have finished two projects and thankfully am able to re-purpose a couple of others that are nearly done. I might just finish all of my gifts on time this year! Wouldn't that be different.

First project finished is a set of fingerless mitts for my dear step-granddaughter, Elana. Elana has had her share of tough times this past year. She has a malignant brain tumor that is basically inoperable. However, God has smiled on this beautiful child and the tumor has stopped growing while showing virtually no symptoms. Praise God! She's been doctoring with St. Jude Children's Hospital, where the care has been excellent. She was recently told not to come back for a recheck for 6 months, a real sign of progress. I hope she likes these mitts. Made from beautiful, soft yarn, which is a mystery to me because I started these mitts a couple of Christmases ago for myself (I think it's a Debbie Bliss yarn). I hope Elana will get more use from them than I would have.

The second finished gift is for her brother, Ryan. I remember Ryan as this precocious little boy, not the tall, handsome 17 year-old he is now. Hard to believe he's grown up so fast. He lives with his father now, but we usually get to see him when we visit his mom, our daughter, Amanda, in Indiana over Christmas. Ryan's gift is a scarf, knitted in my own pattern (K2, P2 on the wrong side, K all rows on the right side). I went through my stash last week and found this gorgeous, variegated New Zealand wool from Ashford called Tekapo. It's a double knit weight. Thee scarf was an easy knit and I enjoyed working on it when I was too tired to do more intricate work. The colors are pretty, but I had no idea how striking the patterning was until I blocked the scarf this morning. The green makes a beautiful diagonal pattern through the other colors, making this scarf (I think) very special. I hope he likes it! The picture shows it as it is being blocked.

Finally, a stealth project for a certain, sweet granddaughter (who shall remain nameless for now) who is growing up too fast. This pattern is called Orla (my Rav link). The yarn (Spud and Chloe off white and Lorna's Laces Shepherd Worsted in Fresh) is so soft and spungey. It's going to make a great, warm hat. It's been an easy pattern to work on, too, in spite of the colorwork.

Time to get back to knitting! How are your Christmas preparations going?

Thursday, November 25, 2010

Grateful

In the past year, I've come to realize the value in replacing a focus on gratefulness for complaints. Sure, I have things to complain about: a brain that functions at the age of a 70-something woman (I'm 60), aches and pain, no longer being able to work, etc. etc. etc.

A friend of mine has helped me to see the benefit in focusing on the positives in my life. This also comes with learning to focus on the present instead of the losses/pains of the past.

I will spare you my list of things I am grateful for on this Thanksgiving Day. But I leave you with these questions? Would your life be better if you focused on the now? On all of the abundance in your life, instead of the things you think you "need." On all of the advantages you have? On all of your blessings?

Happy Thanksgiving!

Friday, September 24, 2010

Today's your birthday!

Happy birthday to my oldest son who turned 38 today! I CANNOT believe I have a child who is 38 years old (sorry, son!). When I think back over the last 38 years, I remember so much. First is the pregnancy. I didn't even know I was pregnant until I went to the doctor for a period that had lasted for three weeks. The bleeding continued until about 20 weeks. During that time, we made multiple trips to the hospital, thinking we had miscarried. Each time, they sent us home saying "you're still pregnant!"

Then there was the nausea. No, honestly it was really daily barfing. Every day I would get up, eat breakfast, and promptly lose it one hour later. Finally, at 5 months, (this is the embarassing part), I got so ticked off with the routine that I threw a perfume bottle at the bathroom wall and said, "that's it. I am not doing this anymore." And guess what? It stopped. Shortly after that, I felt the baby move for the first time. A little flutter here, a little flutter there. It truly was happening. I was so ecstatic. I made maternity clothes. I knitted a sweater. I made baby clothes.

Ron and I worked on the nursery, painting the walls, painting a chest of drawers and selecting a crib, a mobile for the crib, a changing table. But the greatest addition was the rocker we found in Ron's parents' basement. We cleaned it up and I sat in it regularly during the last few months, singing to my unborn child. We were so ecstatic that we were finally going to have a baby. We had lost a pregnancy 2 years earlier and had waited for what seemed an eternity to finally get to this stage.

At 6 months, I talked with my OB about natural childbirth and, when he refused to cooperate, we made the transition from this doctor in our hometown, Lancaster, Ohio to an OB in Columbus. Thus, we traveled to Columbus once a week for Lamaze classes as the end of the pregnancy neared. Chad was due on October 1, 1972. However, about 4 am on Sept 24, I woke because I had felt a loud "pop". Yup, my water broke. We called the doctor around 9 am, when contractions were coming more regularly. We left for Columbus soon after due to the 30 minute drive. However, Chad didn't arrive until shortly before 6 pm that evening. Ron was able to be in the delivery room with me and it made the trip to Columbus SO worth it. When Chad was born, I was in a daze (not drugs, but exhaustion), but I remember thinking that he looked a little like his dad and a little like me. Those long fingers, though, were definitely his dad's. We brought him home about 3 days later. Thus began my love affair with this beautiful child.

He was always such a good child. He slept well, was easy to discipline, grew like a weed (he's about 6 foot 7 or 8 inches now!). Now he's a grown man, successful in his work, a wonderful father. He is married to a wonderful woman, has two beautiful children and another one on the way. And I still love him with all my heart. Happy birthday, Chad!

One clue solved

Since early summer, I've been dealing with increasing fatigue. Lately, it's gotten so that I wake at 5 am, breakfast, etc., back in bed at 7 am until 9. Then awake until 2 pm. Sleep until 6 or 7. During the time over the noon hour, I constantly feel like I will fall asleep if I close my eyes. It's getting worse every week.

This week, I visited one of my docs who told me, very frankly, "you look like hell!" "Gee thanks" I said! Then he tested me for a bunch of stuff. I'm thinking all the way home (trying to stay awake) that once again they will find nothing. But not this time.

My thyroid has, apparently decided to slow down...a lot. I start medication tomorrow. With any luck, I will be able to stay awake in the mornings and maybe the afternoons by the time my niece's wedding rolls around in mid-October.

We are so excited about going to this wedding. ALL of my family (with the exception of my sweet son-in-law, Dean) is going to be there. Pictures will be taken. I am just SO glad my doc figured this out. Fingers crossed that this will solve the fatigue problem!

Monday, September 20, 2010

A sock knit along with Through the Loops

Hoping to have some warm Christmas socks, I have signed up for the Through the Loups Knit Along. I will be using Zen Yarn Garden Superwash Sock in Garnet, one of the sock yarns I received from the three month sock club. It's a wonderful yarn, soft, with a good twist that should show stitch detail well. Using size 1 (2.50 mm) needles, I got 7 stitches to the inch, a little lower than required. So, I will make the medium size, instead of the large.
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Saturday, August 21, 2010

Growing into my Age

Two weeks ago, I turned 60. It seems odd to be this old since, as a child, I only ever imagined what it would be like to be 50 at the turn of the century. I never gave much thought to what happens after 50.

I thought I would feel old. I do, but I believe it has more to do with my illness than my age. All around me, I see 60 year olds who are still very physically active. Admittedly, they work hard, but they do not have the muscle stiffness and weaving stride that I’m coping with.

I do see many people my age scaling back at work. Especially at businesses where they respect older people for the contribution they are able to make and find a place for them, even if they are no longer able to perform at the pace they once were.

So, getting old is a little different than what I had imagined, but mostly because of the challenges that come with ME, not so much the actual chronological age, for me.

The best part is being able to slow down. Not feeling like I have to get everything done that need to be done. The worst part is that my brain wants to do more, but my body just gives out before my brain is done imagining what would be fun! For instance, I wanted to take my granddaughters swimming several days when they visited a few weeks ago; but I knew the sun and heat would do me in, and that I must conserve my energy so that I could last through the trip to take them home.

So, I guess you could say my life is “smaller” than I ever imagined it would be at this age. I imagined being able to be more active in my church. I had hoped to pursue training as a lay leader, and perhaps join the quilt group. Now, I’m lucky if I can get through my errands when I spend the day in Ames. Days spent at home are most satisfactory because then I am able to rest when I need to.

Along with the limitations of age, however, has come a peace about the past. My life has had its ups and downs: divorce, child custody battle, unemployment, foreclosure, moving, returning to college, and death of a dear grandchild. I believe I have come to grips with each of these “demons” and have finally been able to quiet the emotions that used to bubble up when I thought of them.

Probably most significantly of all, I am at peace with my family. My family of origin wasn’t perfect, but I’ve come to the conclusion that I don’t need it to be perfect. No parent is perfect, but I believe mine did the best they could for the situation and knowledge present at the time.

I also know that I have not been the best of parents. I know this because I see the way my children interact with my grandchildren. They are more patient, more attentive, more involved with the children than I ever was with them. Whether this change is because they wanted to do better than I did, or because society is doing a better job of teaching the art of parenting, I don’t care. I’m just happy that my grandchildren can expect to live better lives than their parents and grandparents lived.

And that’s all we can hope for, isn’t it?

Monday, August 16, 2010

Bubbie and the Pea

My three granddaughters (oldest girls from the "Michigan 8") visited in late July for about 11 days. We had so much fun with Sadie (aged 6), Cessalie (8), and Susanna (15/16).

One thing I love about the age Sadie and Cessa are at is the way their minds work. There were several times when one of them said something that nearly cracked up Papa and I (Susanna has given these moments in the past, too.) But the best story came out of one morning when the girls and I were laying on my bed watching PBS kids.

I have a chronic pain disorder (some combination fibromyalgia and chronic fatigue syndrome, which BTW is now called myalgic encephalomyelitis) that has affected my sleep patterns especially over the last 6 or 7 years. We have a sleep number bed, which helped for a while. But I've found the greatest relief at night from one of those memory foam pads (about 3" thick). The thing creates all kinds of problems with our sheets, but I really notice the difference when I sleep somewhere else, without the pad.

So, we're lying on the bed that morning and Cessa says, "Bubbie (yes, that's what they call me and it's a whole other story. Believe me, I've tried to get the Michigan 8 to change to Nana but they just smile and shake their heads no), why does your bed feel so good?" I explained about the mattress and the pad and then spent 1/2 an hour demonstrating the controls for the air mattress and explaining to them that they were not allowed to come in Papa's and my bedroom and just run the controls up and down any 'ol time they felt like it. "It's not a toy. You may lie on the bed, but you cannot push the buttons on the control."

Of course the next question was why do you have all this extra stuff on your bed. So, I briefly explained that I had a sickness that gave me a lot of pain, especially at night and the bed set up helps me sleep.

Two days later, we're driving in the car and Cessa asks, "Bubbie, you know that story about the princess and the pea? Well, if someone put a pea under your mattress, could you feel it?"

ROFL! What was I to say (I nearly drove off the road, trying not to laugh out loud!). I explained that, no, I wasn't quite that sensitive.

Kids! I do love the way their minds work!

Sunday, August 15, 2010

!!** Whining Alert **!! and other short matters

OK, I'm about to whine. So, if ya don't want to hear it, don't read any further.

1. Since Friday, I am having severe back pain, especially when I wake up. I can hardly move, feel very weak all over. I don't think I did anything to get this started. My neck hurts, too, so I'm thinking it's time for a visit to my NUCCA chiropractor, Dr. Read. I am getting nothing done but sitting around and a few stretches when I wake up.

2. My neurologist gave me a new med for restless leg syndrome (and discontinued another one I had been taking for sleepiness). This med (Mirapex) is also used for Parkinson's (which makes a lot of sense given the amount of tremoring I've had since the day I visited him). So far ( last night and today's nap), I've noticed that once I fall asleep, I sleep very soundly. This isn't what is causing the back pain since the pain precedes the new med by 2 days.

3. My neurologist is running for State Representative to the Iowa House. What a hoot. I wish I had more energy to get out and campaign for him. His name is Selden Spencer and he's running for this district (Story County). Sure hope he wins. He's a good guy!

4. My baby grandson, Wes, is finally better. Every time one of my grandchildren gets sick, I am so scared that some aspect of what's vexing my life (a virus?) may be affecting them as well. I wish the research on this XMRV virus could go faster! The latest news is that the guy at CDC who has been the major bottleneck for viewing the illness as associated with a virus (his idea is that it's a mental illness - something like, "I don't want to work anymore"), has been removed from the CFS/ME research team. Yeah, yeah, yeah, rah! Also, FDA/NIH/DHHS has decided to release their study showing positive results for their XMRV study. It will be published some time in the next two months. This is such amazing good news.

5. I tried to share XMRV research with my internist Thursday and got the weirdest reaction from her, but this is another post (long story).

6. On the knitting front, not much happening. It's hard to sit for very long and knit. Hopefully tomorrow will be better. I can start stretching and maybe do the recumbent bike for a bit.

For now, I'm going to relax in the recliner on the screened porch, where it's 80 degrees with a light breeze. Perfect!

Friday, August 13, 2010

In my father's words: terrorism and the Muslim faith

In the last few days, I have received a couple of emails asking for help/action to convey a lack of support for a building to honor the Muslim faith, proposed to be built near the 9-11 site in New York and a stamp commemorating the Muslim faith. My reaction to both of these emails was not to forward the email rejecting both ideas to "all of my friends." Rather, I wanted to respond with my own concerns about what messages like this do to efforts to understand our Muslim brothers and sisters and honor their right to their own faith, as our constitution and Christianity admonishes us to do.

Then my own father said it so well earlier this week in an email response to one of the requests. He said it so well that I reprint it here:

**********************
"Today I got an email and it caused me to review my Christian faith and my understanding of Jesus' gospel. The email was about the new 44-cent stamp which the US Postal Service is putting out. The stamp celebrates a Muslim holiday.
The email continues a very negative view and encourages the public to not buy the stamp. The negative message accuses "Muslims" of terrorist attacks and names six incidents. The repetition of the word "Muslim" lumps all Muslims together with responsibility for terrorism.
I have a problem with this view.
1) I don't believe all Muslims are responsible for terrorism. The same as I don't believe all Christians are responsible for the Michigan militiamen who proposed killing a police officer to provoke a revolution.
2) As a Christian, what do I do with Jesus' command to "Love your enemies" (Matthew 5:43, Luke 6:27,35)? One thing I believe I should do is not pre-judge others by lumping them all together for crimes some of them have committed.
3) Hollywood and TV have used the old Immigration saying "Coming to America." What do we say to Islamic immigrants who come to America? Do we say that we have freedom of religion, but not your religion? Do we say that you can celebrate only the Christian religion?
These words stick in my throat. I'm not sure what the full answer is for persons of different religions in America, but I am sure it is not the answers in that email. The Arabic word Muslim literally means "one who submits to God." I will submit to Jesus' command "You have heard it said, 'You shall love your neighbor and hate your enemy." But I say to you, Love your enemies and pray for those who persecute you, so that you will be children of your Father in heaven."
***************************************************
We are all born into our families by chance. Some are Christians, others are Bahai, still others are Muslim. Some people do change from their family's belief, but most remain of the faith they were born into. Most of my friends are Christians, some are of other faiths, while some profess no formalized religion.

When we pass on emails such as the two I referenced at the beginning of this post, we simply serve to pass on the overgeneralization that demonizes those outside our faith. Yes, a FEW Muslims were responsible for the 9-11 tragedy. But there are thousands, perhaps millions of Muslims who do not condone what was done by a few. When we espouse an exclusionary way of belief, instead of inclusionary, we are not walking the path that Christ urged us to walk. We must seek first to love and understand, and above all not generalize from the sin of a few to the faith of many.

If you agree, please pass this on through love and understanding.

Tuesday, August 3, 2010

For the mother and child reunion is only a motion away



For the past 12 days, my husband and I have had the honor of having our daughter's three older daughters stay with us. At age 6, 8, and 15, they represented an interesting mix of challenges and joys for us. The 6 and 8 year old were happy with coloring, movies, reading stories, and running through the sprinkler. The 15 year old (who used to do all those things when she visited us years ago) was more interested in playing on the computer, sleeping, and playing on the computer. They all did equally well at the outings we ventured on: our nephew's wedding (pictured above) Toy Story 3, the Mamie Doud Eisenhower birthplace home, and time with their aunt and uncle.

My daughter had earlier expressed a concern that the youngest child of the three (Sadie) would have difficulty being away from her for that length of time. I once suggested that perhaps it was she who might have difficulty being away from Sadie for that long. Actually, it was the 8 year old that was more verbal about missing her mommy and daddy and the rest of the family.


The girls were wonderful. They are such beautiful children that we turned heads and received winks from every grandparent we passed; knowing looks of how precious this time between grandparent and child can be. At church Sunday morning, the two younger ones marched up front with the rest of the kids for the children's
time and Sadie, the youngest, was the first to offer help when the pastor asked. They were putting cans of food in a grocery sack for the local food pantry. When the pastor remarked that the sack was too heavy and asked what he could do with some of the food (like "share" the food, which was the theme for Sunday), Sadie's remark was, "Take some of the cans out!" (which brought a great guffaw from the whole audience).

The visit was SUCH a sweet time. Yesterday, I spent about 16 hours with them on a train from Ottumwa through Chicago, to their home. The enthusiasm fr
om ALL 3 for the train ride was great fun to watch. They were plastered to the windows for a major portion of the trip, watching the scenery go by.

When we arrived at our destination last night a little after midnight, we woke two little girls, w
ho were warm in dreamland beneath their blankies on their special pillows; told them we were "there" and handed them their little suitcases to carry out. Suddenly, after leaving the train, they saw their mother (my sweet daughter, Christine), dropped their suitcases and ran as fast as the wind to her screaming, "Mommy, mommy, mommy. We're home!."

And the sound of their voices....that sweet, painful sound of missing the most important person in their world and of the reunion with that person after days of waiting mad
e everyone in the train station stop and look. At that moment, in my mind, I returned to a moment almost exactly 28 years earlier when my own daughter, Christie, ran across her father's porch to my arms after 6 months of separation. She had been taken from me on a charged trumped up by her father of abuse by her stepfather and given into the custody of her father and stepmother for 6 months. That day, after an awful court battle where the abuse charge was unfounded, she was returned to my custody to stay until she left at 18 for Fort Jackson and her new life in the Army. That day, I thought I would never hear such a sound as my own 7 year old crying out my name in that same, sweet painful voice. Last night, I did hear it again. And it still fills my heart and wrenches my soul.
(on the left is Chris' photo from earlier this year. On the right, she's in the middle, celebrating her birthday with Lemon Meringue Pie [no birthday cake with this little one!]).

Friday, July 16, 2010

I just figured it out!

Last week, I blogged about the current brouhaha going on nationally over the link between XMRV and ME/CFS. For awhile, I thought the controversy was based solely on protecting the reputation of one of the researchers at the CDC. The other night, it came to me that there's a huge, huge issue that trumps Mr. Switzer's reputation and pocketbook.

If the CDC screwed up when the first outbreaks first occurred in the 80s, and the blood supply is now tainted with XMRV; if, indeed, this IS a contagious disease; what's going to happen if the federal government finally admits this is a contagious debilitating disease?

Lots and lots of disability claims for social security, is what. On a system that is already in questionable fiscal health.

You figure it out!

Monday, July 12, 2010

Hello, Dolly!



I
said hello, Dolly......well, hello, Dolly,

It's so nice to have you back where you belong.






You're looking swell, Dolly....I can tell, Dolly,
You're still glowin', you're still crowin', you're still goin' strong.




I feel that room swayin'....while the band is playin'

One of your o
ld favourite songs from way back when.






So, take her wrap, fellas......find her an empty lap, fellas
Dolly will never go
away, Dolly will never go away, Dolly will never go away again.















Hello Dolly tea rose
Summer 2010 garden

Wednesday, July 7, 2010

What's the hullabaloo all about?

Dear Reader:

There is a political war going on in Washington over the research results surrounding recent efforts to find a cause for the illness that has been the bane of my existence for the last 22 years. In 1988, DH and I returned from a conference/personal vacation in Virginia Beach. We both came down with the flu. He got better (he has the immune system of someone from outer space) and I got very sick. Pneumonia, low grade fever, painfully swollen lymph nodes the size of my thumb, brain fog, inability to concentrate, and UNBELIEVABLE fatigue swept over me and lasted for months. I took a sabbatical from my work at the church for 3 months and was finally able to function at a low level, raising my children and going back to part-time work.

The disease has waxed and waned since then. It began to get worse after a series of stressful life events in the years after 2000. I tried partial disability/part-time employment; then returned to work full-time two years later. In 2007, my supervisor, noticing that I was constantly struggling with muscle pain and fatigue offered reduced hours. I went to 70% of normal hours. This allowed me to rest in the afternoons, but things just became worse. Later that year, I began noticing serious errors in the statistical analysis I was doing for my work. I had difficulty remembering research results in front of my customers, and increasing found that I was unable to organize my time and make simple decisions. I began loosing control of my life. I also suffered from headaches, lost my balance easily, and frequently walked into walls. Emotionally, I felt detached and on June 28, 2008 - I lost all hope of ever being able to function.

Those of you who know me know that this is NOT me. I have always been a high achiever. I loved the work I did at ISU. This was not an effort on my part to "get out of having to work!" That day, I admitted myself to the hospital to get some help. Over the next few months, all of the behavioral techniques they attempted to teach me were ones that I had been using for years (and were no longer working). Finally, I got in to see a neurologist and learned after an MRI that I had brain lesions "at such a level as to expect you were looking at the brain scan of a 70 year old woman." I was 58 at the time.

Subsequent testing ruled out multiple sclerosis. I believe I have Myalgic Encephalomyelitis. Researchers at the Whittemore Institute in Nevada have successfully isolated a virus (XMRV) in the blood of a large majority of a cohort of those diagnosed with chronic fatigue/myalgic encephalomylitis (CFS/ME). These results were further duplicated by two other research labs (one of which was Cleveland Clinic). The studies also found XMRV in the blood of nearly 4% of the control group, raising alarms about the potential health of the general population . Since then, 3 countries have issued statements that they will no longer accept donations of blood from patients diagnosed with CFS/ME out of concern for the health of the blood receivers.

There is a researcher at the CDC (William Switzer) who has staked his reputation on CFS being a psychological illness. He has developed a protocol for treatment that is basically a cognitive/behavioral approach. He believes teaching people coping skills and different ways of thinking will return CFS/ME sufferers to good health. Switzer has also probably made quite a bit of money for himself, as well as a highly visible reputation. The study his agency conducted chose to use different procedures to test samples from the Whittemore and (guess what) did not find XMRV in the samples. The paper from his study has recently been published.

Another study using the Whittemore samples was conducted by the National Institute of Health (NIH) and Food & Drug Administration (FDA) DID and find XMRV in a majority of CFS/ME sufferers and in 7% of the control group (non-diagnosed general population) (yes, I said 7%). Their paper was accepted for publication and was in galleys (final stage) when the CDC issued their results. Guess what happened. The CDC paper was allowed to go to publication while the NIH/FDA paper was embargoed (pulled back and not published). Do you sense the politics that are going on here?

So, if you've gotten this far in my blog, and are still interested (and like me, totally angry at the politics of this idiocy), please go to the web address listed below and sign the petition to allow the NIH/FDA paper to be released. There is also a suggested text to send to your federal representatives/any important people in Washington you might want to contact.

I thank you from the bottom of my heart for anything you decide to do. I especially covet your prayers for not only myself, but also anyone facing this illness. There are children who have it who cannot get out of bed, they are so weak. I fight it everyday. Some days I have to give in and spend the day in bed. Other days, I go out and try to act normally. The next day I am so tired I can barely move. But life was not meant to be lived in bed. So, even if I have to pay, sometimes I play, knowing what is coming later.

At any rate, thanks for reading/listening!

Here's the web site: http://healthcare.change.org/petitions/view/xmrv_allow_science_to_progress



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Tuesday, June 15, 2010

It's one with a BIG O

OK, so fess up time. This year on my birthday, my age will have a zero on the end. So, it's like one of those monumental times. Not as bad as my sixteenth birthday, when I decided I didn't want to be 16 (my dad heard me crying in my bedroom, came up, asked me what was wrong, and probably had to stifle a laugh as he ran back down to tell my mother. I am not making this up!).

So, the other day, I'm on Facebook, and I decided that I really don't want anyone to know how old I am. So, I go to my profile and change the date on my birthday to 2010. I get an error message, "You must be at least 13 years of age to participate in Facebook."

OK, bad idea.

Then I had another idea. Why not change the date each year so that I stay 39. So, I put my birth year in as 1969. That was easy, until I told DH about it and he informs me that I actually would be turning 41, not 39, if I leave it at 1969.

So I said, "OK, I'll go back and change it to 1971. Then next year, it will be 1972."

1972 is when Chad, my oldest child was born.

Bad idea.

Guess I'll just have to "woMAN-UP" and confess. I was born in 1950. You do the math!