Renee's Reflections

Saturday's Scribbles

2009-11-14T09:07:00.003-06:00

Good Morning! I cannot believe another Saturday is here already. Time goes by so quickly even from my sofa sanctuary.

It is a "blah" time of year in the Midwest when the trees are bare and the bright colors of summer have given way to dull browns and muted greens. When the sun is hidden under gray clouds everything looks even "blahhhher".. I think it helps prepare us for snow!!

Looking back over the past week, I am glad it is almost over.....What has happened in the past 5 days? Our long trip to the doctor and back....a family member's urgent need for heart tests resulting in a need for artery stints, a court hearing to place 3 precious children into foster care, and last but not least...Joel's resignation from the congregation he served for 3 yrs before becoming disabled from Lyme. Add to it my reactions to Zithromax and yeah, it has been a rough week and it has me flat on the sofa in a major crash. Joel has handled it all quite well, which tells me that he is stronger AND he deals with stress in healthier ways than I do. It affects him but not as quickly or has hard as it does me. Part of that "inside job" I speak about.

Back to Joel's resignation....We had discussed at great length the need for him to stop commuting due to his health and being gone so much from home. We knew something else would have to open up near us so he would not be jobless. Something did. A part time interim position in a small church near our city. Is he ready for part time work? We think so. He knows this congregation well, as the pastor who is leaving is a friend, they shared an intern for a year, and joined together for Christmas Eve barn services when Joel pastored a church here. When Joel interviewed for the position they said, "We know you and you know us, this is great! They know he is fighting Lyme and they are open to him working only 3 days a week, or even from home, etc. This is not a permanent job, but should last at least 6 mo. when we hope he will be ready for full time work again. It is a risk in some ways, but it feels right. Even though it feels right, we both have a great deal of sadness in leaving his other congregation. He will miss the people so much, and he does not feel like he accomplished his goals there. Lyme made that impossible. This also gives the church a chance to move forward and call a new pastor to their congregation.

I always wait until December to start my Christmas season. This year I am already listening to Christmas music and thinking about getting out the winter storage tub...filled with not Christmas decorations, but winter decorations..like snowmen, etc. Maybe it is all the commercials on TV or the trees for sale in local lots. Maybe it is because life is too short not to celebrate when we can!

One of our grandchildren turned 6 this week. She always makes us laugh with her chatty phone conversations. She used to call Joel, "Pastor Papa". After all he is a pastor...and a papa.....

We are fixing pork stew today in the slow cooker with apples, sweet potatoes, pork sirloin, celery, peas, carrots, and basil, garlic, and broth to give it more flavor. I started doing what I could yesterday ~ cutting up carrots, etc. a little at a time so as not to make me worse today.

I have been reading Shannon's blog, "Ticks and Trust" for quite awhile and today she wrote about a teen named Nicole who has Lyme...and Nicole wrote about her young friend Sara who also is fighting Lyme. Their journies are so difficult, it just breaks my heart to hear all they have gone through in their short years. So much needs to be done to wake up the medical community about Lyme Disease. Speaking of the medical community, Laurel at "Dreams At Stake" has posted alot of valuable information about CFS/ME and the conference held with the CDC. There are many videos you can watch that are informative and encouraging, including Laurel's own. Slowly but surely people with CFS/ME are being heard. Things are starting to change!!
*Both blogs are listed in my blogroll. So many good posts this week by so many bloggers.....check them out!

I am off to my sofa....re-reading A Pace of Grace by Popov, and Standing Firm by Donna Partow. When I am down, an inspirational book is the encouragement I need to lift me up.

Until next time.......

A Rough Night: I Need My Woolie!

2009-11-13T09:05:00.005-06:00

Like Linus I need my blanket when times are tough. Today I am wrapping up in my Woolie and hunkering down to rest and contemplate what is going on within my body. It's not good.

A couple of weeks ago I noticed that a couple hours after taking Zithromax my heart pounds and skips beats. I also noticed that I get "air hunger" at the same time. There was one evening where my heart skipped beats for a few seconds and I broke out in a sweat....worrisome..... but with Lyme Disease these kind of symptoms are not unusual. Since I already have what my LLMD calls "Lyme Heart", I went off Zithro and Mepron for a few days and went back on this past Tuesday...taking only 250mg of Zithro with the Mepron. Last night I was laying in bed trying to sleep, and my heart started pounding and skipping beats, my body started shaking hard, and I had "air hunger". My pulse was 76. Not a big deal, although my normal pulse is 60 so this was "high" for me. Things settled down and I was able to sleep after a couple hours of laying quiet, doing EFT, and trying not to worry. Today I am having less intense symptoms but they are still there.

So, how much of this is an "inside job"? We have had three major stresses this week and a trip to the doctor so I know my adrenaline is surging. How much is from the medication? How much is die off? I do muscle testing to find out reactions to meds, foods, and other things. Sounds strange, but it works. Our bodies are made up of energy after all and everything and everyone affects this energy. Seems it is from the Zithromax but the stresses have added to it. My body needs the Zithro if the heart can handle it. I won't rely just on muscle testing of course, but will call my LLMD on Monday if things stay the same or get worse. Today I am sick and tired of being sick and tired.....so I will be kind to myself, put on my pjs, wrap up in my Woolie (wool comforter) and pamper myself!

Partners in Lyme: Forward......March!

2009-11-11T09:21:00.006-06:00

Monday was a full day. A short stop in my hometown, a visit to our NAET practitioner and appointments with our LLMD had us leaving home at 8am and returning at 7pm with around 5 hrs spent in the car. Joel needed to nap half way there and again before we headed back home. He could hardly function after we saw the doctor so we went to a park where he could sleep in the van before we headed out. I left yesterday morning optimistic that I would be starting the herbal protocol and confess that I came home really ticked off as I am now going to be taking 4 meds instead of 0! Herbs have been put on hold for at least 4 more months...This was NOT part of my plan. Joel also came home with more meds and a clinical diagnosis of Babesia. He and I "share" Lyme, Bartonella, and Babesia...I alone had Ehrlichica, but Doxycycline took care of that one. Due to my knees hurting again and a couple of other Lyme symptoms returning, I am going back on Doxy. And along with the Mepron and Zithromax, I am going to attempt to take a second antimalarial medication, which also is a cyst buster ~ Plaquenil. Joel is taking Cef, Mepron, Zithromax, and Plaquenil. With the Plaquenil, your peripheral vision needs to be checked every few months as it can be damaged. (not cool) More meds, more debt, more herxing.....We are feeling more than a little challenged by this, but are willing to try because we trust our doctor AND we want to get better! If the Plaquenil does not work for us, there is an herb used called Artemisia.

Our LLMD goes to several Lyme conferences every year, including the ILADS. She is always looking for new research and ways to help her patients fight Lyme. At the last conference research showed that with 14 different strains of Babesia, taking two antimalarial meds at the same time gives people a greater chance of killing it all off. So....that is why we will attempt this. She also learned that pulsing medication 1 month on and 1 month off is helpful for some with late stage lyme...I will be doing that with the Doxy. Dr. V also gave me new supplements to increase the absorption of probiotics and kill off the yeast and bacterial infection I already have. TruFiber and TruFlora taken together. FYI, she also said that putting boric acid in a size 00 vegetarian capsule and inserting it will kill off yeast and bacteria too. Because she herself deals with MCS and has many patients who do, she always seems to search out ways to take care of problems without putting MCS people at risk.

The good news is that Dr. V saw more improvements in my exam and also some improvement in Joel's neurological symptoms. Yahoo! She agrees that he cannot take the full doses and should "do what works best for his body". It's great that our LLMD has our best interests at heart.

Now, back to my attitude: I know this race is a marathon and not a sprint, and I know that antibiotics are helpful and for us necessary ....for now.... and that herbs are in my future......soon....and so is better health.....but I still want this to be over...like yesterday! Ahhhh, but don't we all.

I am working on shifting my anger or fiesty attitude as my mom would have said, into something productive, so I'm putting my focus back on to the positives we heard Monday: Joel has improved...I have improved.....We are now strong enough to take more meds and our insurance covers most of them......we have a great LLMD who LISTENS to us and trusts our judgements.......we have a wonderful NAET practitioner who is helping us on this journey....we have each other....we have our family and friends.....we are STILL here to enjoy the day! We have much to be thankful for ~ even medication that looks like yellow paint and Lyme bills "up the wazoo..."!

Forward....March. I am moving forward and looking ahead to March and going off abx and taking herbs. Forward........march.....into the battle to kill Lyme and its buddies. Forward......march into a better attitude. Forward....march!

Saturday's Scribbles

2009-11-07T09:14:00.004-06:00

Good Saturday Morning!

The sun is shining and the warm temperatures (up to 65 today) have us opening windows to get some fresh air into the house. We would call this an "Indian Summer" day. I did look up information on where this term came from~ it has been around since the 1800's and one theory is that after the first hard frost, when the weather would warm up again, the Native American Indians would hunt game to prepare for winter. There were other theories, but I am going with this one.

Joel is outside putzing already this morning. He has been making an outside vent cover for the microwave exhaust fan. He enjoys doing "projects". He has felt a bit better this week, and we are anticipating a change in his status when we see the LLMD on Monday. This is partly due to cutting down on the dose of Zithromax, but the change in him is worth it. Hope the Dr. agrees. He is much more active, and feeling well enough to be frustrated by his limitations! That's a good sign.

I am still fighting a yeast infection, but a NAET treatment for the bacterial part of this problem worked! I am hopeful. I am doing more research on the herbal protocol now. I am so ready to get off the abx but scared to do so? I guess I can always go back on if things go down hill.

We bought a new bed several weeks ago and I still cannot go near it. It isn't for me to use, but it makes me feel ill and still smells from what I gather is the flame retardant. Nasty. Even with a barrier cloth mattress cover, I am thinking it will be months before we can have it in a bedroom. Ahhh the joys of MCS. If you need information on MCS one good place to go is The Canary Report, whose site is listed on the right side of my blog screen.

This weeks news has been horrid. I find myself angry and stunned by all of the violence in our country. I don't begin to understand what makes someone pick up a gun and kill people. Don't get me wrong, I am all for defending ourselves, and my hubby spent 8 yrs in the military (although he chose the Air Force to avoid carrying a weapon). In fact, in 1984 our family went through a traumatic experience with a mentally unstable member of our congregation. Joel was pastoring a church in central MN at the time. We received a phone call from the police late one night telling us that this man has shot up his in-laws house and told them he was on his way to kill the pastor. We immediately woke up the kids and put all 5 of our children on the floor of our bedroom. Joel took his rifle and stood by the front door to keep an eye on our road to the parsonage which sat on 3 acres with the church near the edge of town. He would have used his gun if he had needed to defend our family. Thankfully, the 4 police cars arrived before the man did. We were escorted out of town until the man was arrested. The man's feelings for my husband never did completely resolve and our lives there were quite stressful while we lived there. It affected our family greatly, and made us realize we would do anything we needed to do to protect our family....but I am off topic now! I feel so sad for the families of those who were killed. God be with them all.

I just got off the phone with a dear friend from Ontario. We "found" each other through a newsletter I wrote for the chronically ill. I had sent one to my old friend and college roommate and she knew M. was also sick with CFS and thought she might like to receive it ~ so that is how we"met". I believe we were brought together by God. Thanks to her and her husband who insisted I be tested for Lyme, I was finally correctly diagnosed. She had CFS for 20 yrs that turned out to be a result of untreated Lyme too...just like me....Small world.. I really hope some day to meet and visit with her in person! Off to rest with a smile on my face for the sunshine, warm weather, and a long overdue visit with a friend.
Until next time.........

Self-Forgiveness

2009-11-03T11:20:00.006-06:00

I have been re-reading "A Pace of Grace" by Linda Popov this week and the chapter on forgiveness spoke to me at just the right time...actually the topic of self-forgiveness was just what I needed to hear. My inner critic had been marching around in my brain with a megaphone, reminding me loudly of all my failures and mistakes. She especially likes to remind me of my less than perfect skills at being a mother. Popov's insights on self-forgiveness really spoke to me, and hopefully will for some of you, too. Let me share a few:

"Forgiving ourselves means we stop punishing ourselves or feeling hopeless for something we did. We move ahead, ready to do things differently, with compassion for ourselves and faith that we can change."

"We cannot change the past or undo the actions we deeply regret, but we can make amends in the present by changing what we do now. Instead of making excuses, we can make amends. Instead of shaming ourselves when we make a mistake, we can take responsibility to clean it up. We can call ourselves to humility, not humiliation."

Popov spoke about not focusing on our faults, but on the "virtues" in our lives. She writes, " When we focus on our virtues, we no longer feel like a victim of our own deficiencies." This is exactly how I had been feeling...helpless with the things about myself I still want to change and frustrated like the Apostle Paul who said, "I do the things I do not want to do." I was being held captive by my own deficiencies because my focus was on them, and not on the virtues I do have.

There are many areas of my life where Popov's thoughts would apply~ relationships, managing my CFS and Lyme, my eating habits, etc. etc. I found her insights on forgiveness to have so many Teachable Moments, to use her words. I end this post with her words: Self-forgiveness heals.

And anything we can do to help our healing process move forward is a good thing!

Saturday's Scribbles

2009-10-31T11:09:00.004-05:00

Good Morning! The sun is shining, the air is crisp and after Thursday's heavy rain and wind here in the Midwest, the trees are mostly bare and the ground is covered with a heavy blanket of leaves.

Thursday our oldest daughter, son-in-love, and two grandchildren came for a short-but-sweet visit. It was 24 hours to be exact. We enjoyed playing games with the grandkids, eating a good fall meal of pork, potatoes, sweet potatoes, squash, and carrots (an "orange" meal tradition), and caught up on each other's lives. That night Joel had a "candle" campfire on the porch with his lantern and many votive candles to give the porch a special glow. Everyone bundled up and told stories. I joined them for only a few minutes, but had the door open so I could hear their stories and laughter. We feel very thankful that they were willing to drive 5 hours to get here, spent 24 hours and then drive another 5 hours home. We wished they could stay longer, but of course they were wise~ we are pretty tired out!

We were talking about how much we all spend on groceries each month. It is shocking, really. We spend almost as much now to feed two of us that we did back in the early 1990's to feed 10!
Yikes! We do eat alot more organic, but clearly prices have gone up...and up....

Tonight is Halloween and it is well known in our family that mom "hates Halloween". I try to enjoy it, but find all the scary stuff...well, scary I guess! Yuk! But we have pumpkins on the steps, and tonight the porch light will be on to welcome all the kids that come by for a treat.

We also switch our clocks back tonight. I don't like that either, as it gets dark so early. Of course it is safer for the kids who are having to walk to school in the mornings because it gets light an hour earlier. Takes my body a few days to adjust to the change.

Our daughter and son-in-love moved a bookcase down into our living room for us and switched out our TV for the one in the family room. We thought the sound was better, but it really ended up being worse~! So, the evening after they left my stubborn husband moved the TV's back again BY HIMSELF! He did it while I was upstairs napping so I would not have a fit, I am sure.....sigh....He is no worse for wear but it was risky. I am enjoying the second bookcase. We used to have so many books, but I gave away around 100 and now we are down to about that many left I think.

Speaking of books, I finished Dangerous Surrender. I must be careful reading a book of such purpose and passion as I then feel like I am not contributing enough service to the world. I enjoyed it very much, though, and experienced many teachable moments. Hoping to read a good mystery soon, but none are calling my name yet.

We received Joel's latest report from Dr. V. She always sends it after studying her notes, etc. and this time she wrote that the reason Joel is having such a difficult time getting better is his
pre-exisiting condition of CFS. This does confuse me a bit, as from what I read about people who have had Lyme for so long, they recover slowly. I do think she thought Joel was not that sick when he started treatment so would respond quickly, but with the CFS this makes it much more challenging. It seems right now that the CFS is the primary illness in his body and Lyme is secondary. We see her in about 10 days again so will see what comes up then.

I continue to struggle right now with yeast/bacteria, and a push~crash cycle. I have heard that teasel root kills Lyme so am looking into that. I am so ready for this to be over and done and yet it has been only been 27 months.....that is almost 1 month of abx for every year I have had Lyme. Interesting from that perspective.

The other night Joel let the dog out up front, and as he did he noticed movement nearby. Two grown deer were eating from our bush up front. We still enjoy seeing the wildlife, but it comes with a sense of caution. Where there are deer there are ticks and where there are ticks, there is Lyme.

I really enjoyed Kerry's posts on Eeyore this week. Stop over to her blog at
http://www.lemon-aideonline.com/ and read what she has written...It will make you smile and give you "food for thought" as my mom used to say.

Until next time...........

Happy Birthday Princess!

2009-10-26T15:54:00.002-05:00

Today is our second-oldest daughter's 35th birthday! Happy Birthday N.!!!! I have been sharing a bit about our family members on their birthdays and today is no exception. As a baby N. was so tiny and petite ~ wearing size 6mo clothes on her first birthday! She was curious about everything in life and she still is. N. grew up to be a beautiful woman ~ inside and out! She went to college, became a teacher, married and has three children. She is a super mom, wife, daughter, and friend! Like my oldest daughter and daughter-in-love, I would tell you "not to mess with her family". She is fiercely protective of them. At her request, there will be no pictures of her or her family on my blogs. She enjoys life to the fullest, and is active in her church and community. We are blessed to call her daughter!

Happy Birthday Princess! May God bless you today and in the coming year!

Saturday's Scribbles

2009-10-24T09:15:00.004-05:00

The sun is shining!!! We have not had sunshine for so long, it cannot help but brighten our day. The ground is covered with a blanket of leaves interwoven with colors of green, gold, and rust. Our high today will be 50, but no complaints here! SE Minnesota had up to 5 inches of heavy snow yesterday. It has melted by now, but caused more than a few accidents.

Update with Joel: Two weeks ago he was so sick and weak again that we took him off all his meds. After extensive muscle testing we realized he cannot take the full dose of Zithromax..his body reacts to it at the highest dose even when he pulses one week on and one week off. One pill daily along with his other abx seems best. A week ago he upped his thyroid medicine and is less tired. It seems to be at the right dose now. When he made these two changes, it completely changed his energy levels and gave him back his brain. The bugs are still dying, so all the way around this is a good thing!

Update on Renee: I continue to have a higher level of energy even when I am in a crash. I have been having a lot of bone pain ~ Bartonella die off ~ and muscle pain ~ stress related. I tense my muscles big time when under a lot of stress. Overall, my NAET treatments are increasing my level of energy and health. This is a good thing. My goal is to be on the herbal protocol by 2010.

Joel and I plan to make pies again today.. Sweet potato pie this time around. Joel always says he is eating vegetables so it is GOOD for him! He made gluten and sugar free bread this week in our old bread machine. It turned out well and he is enjoying it. We have this funny tradition every autumn. We have what we call our "Orange" or "Fall" meal. We fix, sweet potatoes, squash, sometimes carrots, and a hardy meat to celebrate the start of fall. We both love squash and usually cook up several this time of year to freeze. It carries us over the winter when they are so expensive and out of season.

I am reading Kay Warren's book, "Dangerous Surrender". It really makes a person think about what we do to help others. It challenges us to look beyond ourselves and our own circumstances.
I am in the mood for a good mystery again. Unfortunately our library smells so bad I cannot check out books from there and buying books is costly. I usually try to only buy books I will read more than once, but paperback mysteries often call my name. As long as I can remember I have enjoyed reading. My older sister, by 15 yrs, tells me I had all my books memorized at age 3 and would "read" them to her. One time many years ago, I set a book on fire when I tried to read it while cooking! Thus my motto ~ "So many books to read...so little time!"

I have often used Bon Jovi's quote: "When mapping out your life, be sure to use a pencil." Another motto of late ~ "Life is messy!" A family favorite ~ "It's going to be okay!" Those are just a sprinkling of what I tell myself and others. What are your favorite mottoes and quotes for life? Our words hold so much power, we really must be careful what we say to ourselves and others. Negativity breeds negativity...(Linda Popov)

Until next time.....

Partners in Lyme: Consider The Cost

2009-10-23T11:28:00.009-05:00

Recently I read in the book, "Insights For Lyme Disease Treatment", the following statement:

"Lyme Disease is a disease for the rich."

This statement is not far from the truth, in fact I would say it is right on. Why? Because insurance companies do not want to cover long term treatment for Lyme Disease and the coinfections that come with it. Some people have died from the complications of Lyme because they could not afford treatment! Our country's medical and insurance systems still has a lot to be embarrassed about.

As you know, both Joel and I are getting Lyme treatment with a LLMD. She told us that we are two of the lucky ones as our Blue Cross/Blue Shield Plan covers some of the lab tests performed and so far we have only had co-payments for the prescriptions we need. They do not cover any appointments with our LLMD. Still with our "luck", we figure that we are putting out close to $8,000 a year in out of pocket expenses just for our Lyme and Coinfection treatments with our LLMD, which includes supplements. If we were having IV treatments the costs would skyrocket. Like most people, we don't have this money sitting around....but we have been able to manage resources in order to keep on with treatment. We are not only lucky, we are blessed.

Each of our prescriptions costs us anywhere from $8 to $32 in co payments. One medication I take, the anti-malaria Mepron costs $1,000 a bottle and lasts a month. We are thankful that it only costs us $32....as I know we could not afford it if our insurance chose not to cover it. Still, they are not doing us any special favors....as it costs quite a bit to maintain our insurance coverage. Besides the supplements we take, we are supposed to eat as much organic food as possible. We eat a gluten-free, sugar free, limited dairy diet and between the organic foods and special gluten free dairy free products, it adds up. BUT we are able to do it.

Joel is also one of the "lucky" ones who has good disability with our ELCA Board of Pensions. They accepted his medical diagnosis and inability to work without question. Others have not been so lucky....as insurance companies argue this disease is an easy fix.

I have read stories about people who have sold their furniture to get the antibiotic treatments their child needs, or of families where they all have Lyme and the parents have chosen not to be treated so that their kids can be! I have read many stories of those who cannot afford any treatment and end up in very poor health with no way out. This Disease and it's treatment is not for the fainthearted, nor (said with sarcasm) the lower and middle class. At least most middle class, like us, can get treatment even if it means paying off loans or credit cards in order to do it.

No, Lyme Disease treatment is not cheap nor is it easy. (And I would add, neither is CFS and some other chronic illnesses.) But for those of us who can afford to fight Lyme and still have furniture to sit on????.....we are blessed! We know we have a chance to get well and in the end it will be worth the cost.

Saturday's Scribbles

2009-10-17T08:36:00.005-05:00

Good Morning!

Gray skies, temps in the high 40's, and very low levels of energy for these partners in Lyme have us looking at a blah day... At least we do not have snow like our friends in the Northeast! In fact we are expecting a heat wave Monday with a high of 61!

Joel and I plan to dig out our Cribbage board or Scrabble game today. Crossword puzzles and Sudoku are two other ways I try to keep my brainwaves moving, and I enjoy Jeopardy too!

The H1N1 is certainly giving everyone pause. Our son is a police officer and it is recommended he get the shot due to all the people he is in contact with. So far he has not had the time with the long lines of people waiting for it. I saw his city on TV as the media covered the shortage of vaccine and all the people wanting it. Sounds like children and expecting mothers need to have priority. We hope to avoid any flu of course.

Speaking of the media....what about "Balloon Boy" ??? That is one of those stories that makes a person shake their head! I usually try to watch the story once and then wait for nightly news to tell me the outcome. I cannot afford the adrenaline surges that come with watching the same drama over and over again.

The empty field down the street often is filled with geese feeding, and their honking fills the skies throughout the day. Last week we had a lot of robins gathering in the neighborhood when they prepared for their winter trek. I guess it is time to stop covering the remaining flowers and let nature takes its course. Hopefully, Fall has settled in for at least a couple more weeks. Although I can remember one strange year when our neighbor was out mowing his lawn in December on the same time we were bringing home our Christmas tree!

I finished The Shack and plan to read it again. I am now reading Kay Warren's book, Dangerous Surrender, which is a very interesting. Expect I will thumb through my latest Midwest Living magazine, and finish the Sat. crossword puzzle. Such an exciting day ahead :) ~About as exciting as this post!!

Until next time.......

The Three Musketeers

2009-10-15T16:43:00.010-05:00

Finding myself back either back in bed or on the sofa is once again challenging me to stay positive. The skies are gray, my mood is gray, and in a crash of this caliber, my tendency is to wallow in a bit of self pity.....a waste of precious energy of course. I have spent time looking back to see if there were warning signs that this was coming, and to ask myself what I could have done differently. I have silenced my inner critic and am bending an ear to my Gentle Observer, Encourager, and Cheerleader ~ The Three Musketeers inside me that are clamoring to be heard.

When giving a voice to my Gentle Observer, I realize that there were some warning signs of an impending crash....such as finding myself unable to sleep past 6am, waking up wired and yet not wanting to get out of bed, and a need to keep myself occupied....not being able to concentrate on just the TV but needing a book in my hand to fill in during commercials, or the remote for surfing the channels. I recall saying a few times over the past couple of weeks, "I need to rest". "I am so stressed." And there was one very telling thought that brought me up short..."Now, what is it that I am worrying about so much??" I was so anxious and my brain fog so thick I could not remember what was causing me all the worry. Looking back to when the crash came closer to knocking me for a loop, I now realize that my emotions were all over the board with a poor me attitude coming into play at times. These are observations not criticisms and will give me insights that will help me in the future.

"I do not understand at all the mystery of grace ~

only that it meets us where we are

but does not leave us where it found us."

My Gentle Observer, I will call her Grace, is able to present me with teachable moments. She gently guides me not only on my journey to healing, but in all aspects of my life. She sees clearly with eyes of love and she speaks the truth without judgment. Grace is caring, forgiving, and is able to say what I need to hear without making me feel rejection, shame, or despair. She is a good friend and gentle teacher.

"We should seize every opportunity to give encouragement.

Encouragement is oxygen for the soul."

My Encourager , I will call her Esther, is in my corner! She reminds me that I am not alone, and that I have done a good job with all that I am dealing with. She affirms to me that this journey is as important as the destination....and that it is a marathon not a sprint. She encouraged me to keep moving forward ~ searching, learning, growing, and healing. Where would I be without her?

"Hope begins in the dark, the stubborn hope that if you just show up

and try to do the right thing, the dawn will come.

You wait and watch and work. You don't give up."

Then there is my Cheerleader~ Hope. She echos Obama's campaign motto...."YES we can! YES we can!" as she gives me the HOPE I need to forge ahead. YES, we can get better! YES, we can heal! YES we can have a life of purpose! We can live believe! YES, we can, we can, we can! She gives me the energy I need to keep going. Hope gives me the attitude I need to live with acceptance without falling into resignation. Acceptance and Hope are teammates.

With Grace, Esther, and Hope supporting me, there is ample opportunity for healing. Along with my friends, family, and comforts of home, The Three Musketeers are surrounding me with just what I need.in my life..a gentle observer, an encourager, and a cheerleader.

Problem vs Provider

2009-10-13T09:06:00.006-05:00

Today it is cold.....24 degrees.....I can see the sun .....but I can also see a few large snowflakes drifting slowly down to the ground. This is unusual for us, and in fact it is supposed to be back up to 60 by Sunday...so they say! It is a good day to snuggle under my Woolie ~ for more reasons than the weather!

Lyme and CFS: I have been lamenting Joel's and my poor health lately. We are struggling. Joel can no longer take the massive dose of Cefoxime ~ it makes him unable to function at all and muscle testing says it is harmful for his body. He is taking Zithromax at 1,000 this week along with 500 of Cef and that is making him feel crappy again. The antibiotics (abx) are taking a toll on my body with yeast and bacteria infections continuing to plague me. I know Babesia and Bart are dying...Lyme seems to be testing steady and not dying for the past few months. I am just so tired of taking abx and having die off and feeling horrible. Poor me....poor me...!

Because of having Lyme, co-infections and CFS, we find ourselves consumed by getting through the days and making good decisions for our recovery...Do we need to look at the herbal protocol? Do we need more activity or less? How much do we need to rest? What else do we need to do to help our bodies fight this battle? Example: Joel felt somewhat okay and cut some branches down Sunday afternoon, having gone to church Sunday morning. He is still trying to recover from those two activities in one day. I am in a crash due to more activity and stress........

Which is another lament! We are still dealing with a family situation which is causing all of us a great deal of stress because it involves children. We must protect the innocent. We cannot avoid this situation and must deal with it, but finding a way of letting go and letting God is necessary for all involved. Focusing on the Provider instead of the problem. It does not take much to make a person realize we really have little control in our lives. We do what we can to be able to lay our head down on our pillow at night and sleep, but we are not in charge! God is!

It is a stressful time at Joel's congregation with only one pastor working now. He has a call in to our Bishop as he tries to make sense of what would be best for everyone involved. We are still waiting for his first disability check but are giving thanks that he has been approved for short term disability. Once again, we have a choice...do we focus on the problem or the Provider?

I am struggling. Struggling with emotions that want to drag me down. Struggling with Joel and I being so sick in the autumn season of our lives. It makes me so sad. Today I don't want to engage in the war on Lyme. So I am going to read A Pace of Grace, watch mindless TV, and eat some comfort food. I am going to focus on being the gentle observer, encourager, and cheerleader I need! I am going to focus on the Provider and not all the problems. And I am going to tell myself what Joel and I tell each other on tough days...."It will be okay!"

Saturday's Scribbles

2009-10-10T13:05:00.005-05:00

Cold, cold, cold!! Woke up to 28 degrees Brrr...chance of snow but it seems to have passed by us for other areas of the Midwest. I did see on the weather channel that North Platte, Nebraska got 15 inches of snow! Yikes! We are heading for record breaking lows tonight. Makes me thankful for our cozy and warm house!

I was thinking about how things have changed over the past 3 generations...the size of our homes, our cars and how many we have, and the need for so much personal space. My son and I were talking about how most kids today have their own bedrooms and it took me back to when he was young. At times when we had just the older 4 children they all had to sleep in one big room. I did not think that was a big deal...wonder if they did? Growing up I never had my own bedroom, and from the age of 13-16 I shared a double bed with 2 sisters! This was not a huge issue for me that I recall, but I can remember how fun it was to have my own twin bed at age 16. Three of us had wall to wall twin beds in our small room, and the dresser had to be in the closet. It was actually fun to have someone to visit with, and when I would wake up in the night, there was comfort in knowing my sisters were in the room with me. Yes, times have changed.

I have been reading the blogs and news coverage on the new XMRV retrovirus that has been linked to a majority with CFIDS/ME. For scientists to discover this virus that is also linked to certain cancers is a good thing.......and yet there is a small part of me that is cautious about what it all means. Time will tell. I still suspect there is more than one cause for this illness.. but to put a label on this means more research and treatment in the future. That is a good thing.

Last night we watched that silly show "Psych" on the USA channel. Watched it right after watching the silly show "Monk". Guess we needed some good old fashioned laughter. There used to be so many good comedies on TV, but now there are so few that we enjoy. Again, times have changed.

Until next time....

Happy Birthday YSIL

2009-10-09T09:09:00.004-05:00

Today is our youngest son-in-law's(son in love) 35th birthday. Happy Birthday G.!!!!! G. came into our lives when our daughter was still in high school. Yes, high school sweethearts! We grew to love him and know his lovely family through the years when we lived in the same area....then we moved away...and G and N finished college as a married couple, heading off to new territory to work on their careers and create a sweet family. As part of their long range plan, a couple of years ago they returned to G.'s first love, farming.

G. is a loving father and husband, kind, caring, a good listener, and a deep thinker. He is active in their community, church, and the world of agriculture. We are very blessed to have him in our lives. Happy Birthday, G. and God's blessings in the coming year!

Balance Required

2009-10-07T12:07:00.009-05:00

I have been feeling better for the past six weeks...it is noticeable when it comes to resting, sleeping, talking on the phone, and helping out around the house and going for a drive. I am still dealing with a lot of symptoms, and find myself on the sofa for a few days at a time...but....cautiously I will make this statement: My energy envelope has increased around 15%-20% in the past 6 weeks.

What does this mean? Is it "real" energy or adrenaline? Is it due to my treatments? Is it one of those times throughout my many years of illness where for reasons unknown I feel better for awhile?

I have asked myself all these questions and in response I believe a few things have come together recently to give me these results~ the NAET treatments are working, the Lyme treatment has helped, AND Joel being home all the time has been a huge factor. I am praying this positive change is permanent, but......I also need to remember to manage the energy I have.

Lest I forget, Lyme and CFS/ME are unpredictable roommates. I was reminded of this today when I read one of Jody's articles on Ncubator. Jody has quite a story to share. She was bedridden and unable to function for a long period of time, but slowly she recovered enough to resume a full life. Unfortunately, after a period of good health, she has now been trying to recover from a crash that has lasted a month. Her words were like a splash of cold water on my face: "I am still vulnerable. I can still lose it all."

Once again I find myself in need of finding the right balance. I need to be positive about healing and yet be realistic about the need to be disciplined and careful with the precious energy I have. I confess that I have been disappointed so often on this journey to wellness that I am sometimes afraid to be too hopeful. I expect the crashes, and to fulfill the prophesy that "feeling better is dangerous". Joel reminded me today of what a negative statement that is, and he is right! What we say and what we believe has a powerful impact on our overall health.

In Popov's book, A Pace of Grace, she writes about speaking respectfully about our bodies. "One of the most powerful ways to create health is to purify the language we use about our bodies. Our words go deep. Our bodies "hear" every word we say. Our very cells respond to words of appreciation and love or to words of contempt and disappointment. "

So once again I am searching for the balance between acceptance and hope. Between reality and my dreams....between being humbled by our illnesses and being humiliated by them, as Jo commented to me recently. A statement with great impact by the way. Find the balance that works for you in the place you find yourself right now.

For me that means a lot of rest balanced with some activity ~ good food balanced with a few fun treats once in awhile ~ treatments with meds and NAET balanced with a few days off, positive thinking balanced with reality thinking, laughter with tears, isolation balanced with healthy relationships, and of course a lot of prayer!

There is hope for recovery, there is hope for healing. But let us remember that this is not a sprint...it is a marathon and the journey is as important as the destination!

Saturday's Scribbles

2009-10-03T07:37:00.005-05:00

It is early Saturday morning here and my husband is getting ready for his annual adventure, the one day a year he sets aside for himself. He will be making his yearly trek to Big Lake Rendezvous Days. It is only 45 minutes from here, so that is good. He has packed his gluten free snacks, water, and extra clothes, and will nap in the car when he needs to. Rain, snow, or windy weather does not get in the way of this day of fun for him. And today it is rainy and windy with a high of 50 degrees.

The Big Island Rendezvous Days is a historical reenactment of early America that has more than 1,ooo costumed participants, 300 tepees and lodges, and merchant traders selling their wares. Picture outdoor fires used for heat and to cook over, muzzle loading guns and shooting contests, traders, lots of live music, and foods such as smoked turkey legs, wild rice stew, buffalo burgers, and homemade root beer. Joel loves all the above and looks forward to this event every year!

I will be here at home snuggled in bed with my Woolie. Tuesday and Thursday my NAET practitioner treated me for several things and my body has responded big time with a lot of reactions. Don't know how long it will last, but I spent yesterday flat on the sofa, was too nauseated to eat supper, and slept 9 hours last night. Looking at the positive, the treatments are helping! Recently Dr. Jacob Teitelbaum, well known CFS/FM doctor and author, wrote an article on the benefits of NAET.

Last week I was sitting in my recliner and saw a reflection in our picture window. I walked up to the front door and saw 5 deer going down our street. Guess they had been to the river for a drink. Our LLMD cringes when I tell her about all the deer we have in our area. When I am outside, I stay mostly on the driveway or porch, and have walked in our grass only twice this whole summer! Joel is very careful too, and when he walks to the river, he stays on the paved path. We would love to live in the country but it would be a big risk for Joel and I to be reinfected ~ for me it would be the second reinfection and would be even more deadly according to our LLMD. Our dream of a small acreage is not very realistic in more ways than one.

We had a roller coaster ride this week with our ELCA Board of Pensions. Joel had applied for disability a month ago and they told him it would take a month to hear back. After not hearing from anyone, he called our congregation to ask if they had sent his check for sick and vacation days, and they said no, we cannot send you a check because the ELCA had terminated your employment with our congregation. No more job, no more salary. No one had informed him of the termination. We don't know yet if this means his letter of call is no longer valid. Hopefully we can find that out this coming week. Joel called the ELCA and they told him that Aetna, the insurance company, had just received his paperwork and they had up to a month to respond. Okay......so how do we pay all our bills and mortgage? One long night of prayer and the next morning, yes, the next morning Joel received a phone call from Aetna and they gave him a verbal approval for disability. Wow. We were thrilled to know it had been approved, and we were sad with the reality that Joel is now on disability. Who would have ever thought.......I have never even applied for disability. Nope. Never. I have not been able to work for 10 yrs but have had little medical documentation until I was diagnosed with Lyme, so I have not even tried.

Fall colors really warm my spirit. I like all the rusts, browns, and oranges that make up the landscape. The smells, sounds, and cooler temperatures bring it all together to make it my favorite season of the year. Even the squash, pumpkins and Indian corn make me smile!!!!

Still reading The Shack, and a couple of non-fiction books. Heading back to my Woolie for some reading time and maybe a good TV movie.

Until next time......

Our Holy Ground

2009-09-30T16:55:00.005-05:00

As I bond with my sofa and contemplate where I find myself once again, I have been reflecting (imagine that) on what I need to do to care for myself. I have been re-reading Popov’s book, “A Pace of Grace”, and came across a wonderful passage in the chapter entitled, “Support Yourself”. Popov says:

“Be a friend to your body. Have compassion for yourself. Be the caregiver to yourself that in your heart of hearts you know you need. Surrender to what you need while having the courage to sustain your hope. Aim for the highest level of health. The balance between acceptance and hope is your holy ground“.

I have been reading the new book by Connie Strasheim ~ “Insights Into Lyme Disease Treatments” and more than one doctor writes about the fact that people who have chronic Lyme often do not get well. This is very discouraging, especially when my own LLMD has told me the same thing. I know I have to accept this, BUT if all I do is stay with the acceptance it eventually turns into resignation for me and then doom and gloom sets in. On the other hand, if I am only in a place of hope and am in denial about what damage Lyme has does to my body over the past 25 yrs., I will not be able to take properly care of myself. So hearing Popov name the balance holy ground, really spoke to me. This is where I am most comfortable. This is where I believe I will find the sacred, the ability to heal. Healing cannot come without acceptance, but it also cannot come without hope. Living and walking within our holy ground is one of the best ways of taking care of ourselves. It is where I strive to be. Is it easy? No, but we do not do this alone. We have support from the village we surround ourselves with, from within, and from God.

God grant me the serenity

To accept the things I cannot change,

The courage to change the things I can

And the wisdom to know the difference.

Sofa Bonding

2009-09-28T18:44:00.005-05:00

After 6 weeks of better health, I am back to bonding with my sofa with what feels like a CFS/ME crash. I started to slide Sat. and continued my downward descent Sunday. Today I have been holding my own so that is a good thing! Now is the tricky part....a bit of energy and I am thinking, "Oh good, it is over!"...I jump back in to activity, and then Bam! Surprise.....I end up back on the sofa. That is not the plan this time around, so I am resting, wrapped up in my PJ's and Woolie, and snuggling in for a night of Dancing With The Stars.

CFS/ME is relentless and unforgiving, and needs to be carefully managed. If you want to watch an excellent video testimony of what it is like to live with severe CFS/ME, visit Laurel at www.dreamsatstake.blogspot.com.

Saturday's Scribbles

2009-09-26T08:27:00.014-05:00

It is a chilly, damp day here in my corner of the world. This is the second day after our trip and I am crashing. It usually takes 2 days for me as I am a delayed reactor. Add to that a poor night's sleep and my sofa is calling me! I have done fairly well lately with added stress and a lot of activity, so that is good news, isn't it. I was lulled to sleep last night by the football crowd again...but it was Homecoming weekend, so right before I turned out the lights I was able to enjoy a short fireworks show overhead!

Our trip was nice in the fact that we were able to view a few trees turning color, and the rocky cliffs near the Mississippi River. I love that hilly area with its bluffs and rugged landscape. I think it must remind me of where I spent some of my childhood...in the Black Hills when we lived in Deadwood South Dakota. Maybe it goes back to my Irish ancestry. I tried to take a few pictures from the car..but since we were traveling at 55mph they are not the best!

Most people think of the Midwest as filled with only corn fields and farms, but there are areas that are hilly and rugged. Of course MN. has over 10,000 lakes too which are beautiful in their own right. This topic reminds me of one game show I watched where a teacher was asked a question about where the Ozarks were located...she answered Kansas!! Good grief! Kansas is as flat as a pancake!

A typical cornfield looks like this first picture.

When you get closer to the Mississippi the landscapes change.

Yesterday Joel and I were driving across town and I glanced over at a sign in someones front yard. I burst out laughing when I read what was on the sign....In big letters it said "Rent My Husband" with a phone number listed below. I am sure he must be a handyman..but a sign like that must get a lot of attention!

I am finishing up the book, "The Shack". This book is profound. It has so much to teach us, even as a book of fiction. It is a gift waiting to be opened, filled with lessons for all of us. It will stretch your imagination, shift your thinking, and deepen your beliefs. I highly recommend it.

Do you watch "Dancing With The Stars"? Can anyone tell me if this show is seen in other countries? I love this show! I know, I know, this is old news......Okay, and here is well kept secret I am sharing....I also enjoy watching "Project Runway"! I laugh at this one since I spend most of my days in outdated denim jumpers and long dresses, soft knit pants and tops, or flannel pants and sweatshirts! Oh, and lets not forget the comfy PJ's and robes that make me feel soooo good on a bad day! Project Runway, who would have thought! Somewhere inside me is a designer wanting to get out!

Until next time......

Partners in Lyme: What Now?

2009-09-25T16:15:00.007-05:00

Joel was able to see our LLMD yesterday. For the most part it was a positive appointment. Dr. V feels that Joel is having neurological reactions to the abx Tindemax. Time will tell, but he has been taken off the med. If neuro symptoms do not improve she will do an MRI. She did see some improvements in some of his neuro testing which she was very happy about. Once again she was firm in saying she believed Joel would RECOVER in the next year and the CFS would be gone too. Some other neuro symptoms he is having are worse ~ his restless legs, his balance, and jerking movements. Joel is extremely weak, and along with that the past 10 days his voice gets weak and soft. That is new. Dr. V also discovered that the pain Joel was feeling in the liver area is from a rib ~ the floating rib~ that is out of place and irritating the liver. That was good news since a chiropractor can fix that. He has had a massive amount of die off of bacteria and muscle testing shows around 75% of Joel's Lyme is dead and 65% of the Bartonella. It took me two years to have these results, so we are thinking he has had too much die off which has put his body in duress. Our NAET practitioner tested with the same results~ a alot of dead bugs!

This is where we must balance out the "first do no harm" and the "first regain health." I am strongly feeling he needs to take a break from the meds as much as he can without giving the Lyme room to multiply. Maybe if he takes a maintenance dose of one med and gives himself a good week off of others, we will be able to tell more what is going on. I believe more and more that we know our bodies better than anyone and when our bodies are talking loudly, we need to listen.

We are still waiting on disability, and Dr. V was clear that when Joel improves, she cannot say he is too disabled to work anymore so she wondered if he would then work part time and try to eliminate the commuting job. Easier said than done. There is a small part of me that believes she has NO CLUE how weak and sick Joel really is? That scares me. Therefore I am going to continue to research all the chronic Lyme material and see what I can come up with. I don't like what my gut is telling me about all this. Don't like it at all.

For now we are being hopeful and planning on Joel improving off of the Tindemax. Twenty-five years of history with doctors has me mostly trusting ours..mostly. We are taking one day at a time, and making "What now?" observations. I know that it takes determination, a village of people, and a library of information to heal Lyme. We are determined, we have help from doctors, practitioners, and other Lymies, and we are gathering as much info as possible.

First Regain Health

2009-09-22T09:15:00.010-05:00

I have been reading Connie Strasheim's powerful new book, Insights Into Lyme Disease Treatment, and what Dr. Susan Marra wrote in her interview about Lyme bacteria has been enlightening for me. She is a naturopath physican who has trained extensively with such LLMD's at Dr. Charles Jones. She, is a Lyme practitioner in Seattle. Hopefully, you readers will also find insights into your own battles. She spoke about how students of naturopathic medicine take an oath to do no harm to the patient, and that usually means avoiding pharmaceutical medications. With Lyme Disease her treatment protocol has had to change.

She says:

"I had every intention of employing a holistic alternative approach to health care, until I clinically met Borrelia, Babesia, Bartonella, Anaplasma, Ehrlichia, etc. etc...."( She refers to them as the 21st century chain gang bugs.) "They are malicious, clever, resilient, cunning, employ camouflage techniques, and are adaptable to an every changing micro-and macro-environment. ......they have one goal, to proliferate. I needed to change my definition of what it meant to "do no harm".

She changed her definition from "first do no harm" to "first regain health", taking the lesser evil of two roads in order to treat her patients with Lyme Disease and co-infections. First regain health....this is now stored in my memory for when things get tough and we want to quit treatment. First regain health ~ even if at times it feels like we are doing harm.

Joel has been back in the trenches with his treatment. He has extreme fatigue and is sleeping 2-4 hrs a day and 8-10 hrs at night without improvement. He is weak to the point that often even his voice is soft. His memory is getting worse. Yesterday he told me all about this idea he had for heating a garage floor and described it in detail. For me this was disturbing because he has told me this detailed idea twice before and does not remember at all. His liver and gall bladder have been "aching" and his kidneys are showing a bit of duress. I had called the office today to order some supplements and the office manager asked me how Joel was doing...I told her and she said, "It is up to you, but I think we need to set up a phone consult with Dr. V. After 3 months he should not be feeling like this." Tonight we spoke to Dr. V and she is very concerned that there is an underlying neurological condition or health issue besides the Lyme. He should have improved by now, especially since he was not extremely ill to begin with ~ .....so he is seeing her this Thurs. afternoon.. First regain health.

Saturday's Scribbles

2009-09-19T11:11:00.005-05:00

We woke up to a warm fall day ~ the leaves are turning colors and gently falling off our locust trees, geese are flying overhead, and the squirrels are scurrying around with their cheeks stuffed full of the food they are storing for winter. Because our town's high school stadium is only across the river and a few blocks away, Friday night's football game lulled me to sleep last night. The band was playing, the fans were cheering, and I actually heard the "roar of the crowd" as I dozed off. Our oldest son played football and I remember many nights of sitting in the bleachers keeping track of his number on the field. A broken hand, dislocated disc and a flat out "nap" on the field his senior year did not make this one of my favorite pastimes! Now I have grandchildren playing football. It is still not one of my favorites.

It is our "city wide garage sale weekend" and I got this hair brain idea Joel and I would go to a few garage sales in our neighborhood this morning looking for some baby clothes......We did, it was a bit fun, but somewhere in the plan we both forgot that I would be exposed to gasoline. I took my mask for fragrances...but our Lyme brains seemed to block out the first word in the ads ~GARAGE sales. After a couple of stops we headed home with my sinuses swollen and my lungs asking for healthy air to breathe. What were we thinking? I swear at times the Lyme just puts us in another zone where we don't think clearly. No more garage sales!

I am reading a new book that is quickly becoming one of favorite Lyme references. Connie Strasheim, from LymeBytes, has written her second book. She interviewed 13 top Lyme Literate Practitioners and each chapter is made up of their protocols and advice. I am impressed and excited about what we will learn. I am starting to see that every patient's treatment plan needs to be individually set up for their needs. The title of her book is, Insights Into Lyme Disease Treatment.

Our wool rug arrived and we have been outgassing it on the back deck. The soft green and beige colors are soothing and we do like the leaf pattern. We hope by November I will be able to tolerate it in the living room.

Some of the fall TV schedule as started. I enjoy watching a couple of reality shows...The Biggest Loser is one and we are watching Survivor in Samoa. I have noticed that sometimes they have too many young girls, and too many "studly" men and that gets really annoying, but this time they have a man on who is supposedly a multimillionaire oil business owner. There is no other word for this man but "evil". I have known of only a few people in my life where they just permeated evil and this guy seems to be one of them ~ even is he is pretending. It has taken away the fun of watching the show for me. I don't like shows where the worst of humanity is considered to be entertaining.

There is one reality show I enjoy very much ~ Dancing With The Stars....love love love dancing and hope some day to be able to dance again! I think I have mentioned before that my mom and I used to do the two step around the house when she would come to visit. My whole family loves to dance and we have been known to break into a dance when the radio comes on. Yep, that is my goal...to have the energy to dance again...

Until next time......

Don't Miss These Posts

2009-09-18T08:16:00.005-05:00

Please stop over at Shelli's blog, http://www.livingthecfslife.blogspot.com/, and read her most recent post titled "Visible Illness". It is an eye opener as we talk about invisible illnesses this week. She has given me a new perspective which I am very grateful for.

Another excellent post is my Kerry at www.lemon-aideonline.com . Too often we are blamed for our illnesses, and she writes about that in her post, "Healing ~ What is it? " giving reference to her friend and life coach, Lynne Morrell.

Happy Birthday OSIL

2009-09-17T08:18:00.006-05:00

Today is our Oldest Son-In-Law's birthday. The BIG 40! Happy Birthday K. !! Hope you have a super year filled with an abundance of blessings.

K. is a man who has a deep love for his wife, his children, his family, and his Lord. He is calm, committed, conservative, curious, and centered. He is smart as a whip, and knows what he thinks and what he believes. He loves sports of any kind but is into hockey and football the most from what I understand. He spends a lot of time with his kids, and works hard at his job. He is active in his community and his church. We are blessed to have him as a member of our family.

Recently I heard a great definition for in laws....A woman talked about her mother-in-love instead of her mother-in-law, and isn't that a great way to blend families together! From now on, our in-laws are going to be referred to as our "in-loves" ~whether they like it or not~ HA!

So starting today, Happy Birthday son-in-love!! Hope it is a good one!

Chasing Down Perceptions

2009-09-16T16:06:00.011-05:00

Chronic illnesses are often described as being invisible due to how"good" a person can look while still being very ill. There illness may be hidden behind a healthy looking exterior. I believe that there is more than one way a person may be living with an "invisible" illness. It may be that to the naked eye they appear healthy and the pain and other symptoms they are experiencing are not noticeable to others. It may be that they feel invisible to others because they need help and understanding, and those they come in contact with do not listen or believe that what they are going through is real. And yet others may feel invisible because of the isolation they live in due to the debilitating diseases they are trying to manage. They feel forgotten as the world continues on without them. Having an invisible illness is often a double-edged sword. It is difficult and challenging, and I want to tell all of you who live with chronic illness that I have deep respect for the courage you have. We are all strong, beautiful, and courageous.

In 1991 I was diagnosed with Chronic Fatigue Immune Dysfunction Syndrome. A name that does not come close to being accurate about what the disease itself entails. Over the years my health went up and down like a rusty yo yo until 7 years ago when the bottom dropped out, and I became homebound due to my low energy levels and reactions to chemicals. Then two years ago I was diagnosed with Lyme Disease and 3 co-infections. After all the years of being sick with CFIDS ( what we now know was a result of the Lyme) I was very surprised and hurt when a couple of people said to me, "Well, now you have a REAL illness that can be treated so you can get well!" For them Lyme was not an "invisible, hard to diagnose. mysterious illness (little did they know) ~this was something they thought they understood, therefore it was "real". And now two years later when I am still battling Lyme and CFS/ME and trying to deal with the damage it has done to my body, those same people who have little or no knowledge of my illnesses, believe they have the answers once again as to why I am still sick and not getting well.

I am not without anger on this subject. I have tried to help others understand that these illnesses are fickle and unpredictable, how pushing ourselves is dangerous to our health ~ that we cannot make ourselves get better and there is no magic cure. I spent years feeling guilty for my limitations and blaming myself for illnesses I did not create or bring on myself. There are times I still struggle with the guilt, but they occur less and less for I know it is no longer okay to blame myself for being ill or staying ill, and it is not okay for others to do so either! Yes, at times I still have some frustration and anger, but I must make it clear that this is not how our family responds. I am not invisible to them. They often can see how I am doing or hear in my voice if I am having a bad day. They are often protective of what energy Joel and I have and try to understand as best they can what it is like to live with Chronic Illness. Both Joel and I know how blessed we are to have the support and love of those closest to us.

Being judged by others perceptions of us is not exclusive to just those who are chronically ill with an invisible illness. Unfortunately, all of us as human beings have at times made snap decisions of others based on our own perceptions. Maybe what we need is to try to live our lives in kindness where we "error on the side of grace" as my husband would say, with all those we come in contact with. Just think what we miss when we find ourselves chasing down the perceptions of others, trying to get them to understand and except us where we are at. Just think what we miss when we make snap judgements of others.

Again, I say, with respect for myself and others who live with chronic illness ~I admire our courage, and give thanks for our willingness to share our experiences, and I am proud of the strength we find on a daily basis to manage our broken bodies. We are a unique kind of warrior and have much to teach the world.