Saturday's Scribbles

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!

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!

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

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

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

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!

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

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

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

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.......