Renee's Reflections

Dr Hummingbird

2009-12-16T19:21:00.010-06:00

A week ago today I found myself studying the poster on the doctor's office ceiling at my medical center, while a doctor checked out my "Netherlands" (as a member of my family says). My regular doctor was not in, and the doctor I saw, who reminded me of a scatter-brained hummingbird, decided suddenly that I needed an endometrial biopsy to rule out a secondary problem. Dr. "Hummingbird" managed 2 apologies in the 3 attempts to get her sample. Drat! I knew she needed to meditate before picking up any sharp instruments! I decided I had spent too much time dealing with medical problems, when I was calmer than the doctor I was seeing. When she was done, she said to me, "You have such a good attitude about this." Of course I did, I was trying to calm HER down ~ I certainly was not going to criticize her when I was in such a compromising position. To use one of Jo's words ~ "Buggerations!" (To be honest, having to focus on her helped me to be able to stay calm. )

Yesterday I finally was tired of waiting to hear from them so I called for the results, which were negative. (Yippee) Most of the time I did okay with waiting, but once in awhile the stress of the unknown got the best of me, like yesterday morning when I turned on the frying pan and then decided to go into the living room to get online. I forgot about the pan until I smelled something really hot....20 minutes later! Judas Priest! Even thought the problem is not yet resolved and I am needing to spend a bit more time recovering under my Woolie, the relief I feel can be measured.

Having Lyme or/and CFS/ME can set us up for other medical issues to crop up. It can be challenging to say the least. Our immune systems are compromised, yet our bodies are trying so hard to help us heal. Whether they are carrying us through the pushing and crashing we tend to do during the holidays and special events, or whether they are giving us the strength to just get through the days in our healing sanctuaries, it is good to give thanks for all they do to keep us going and for all they put up with. Whether it is a fumbling flighty doctor or my stubborn self ~ I need to thank my body for its gallant effort!

Recipe Request

2009-12-15T18:55:00.003-06:00

CFS/ME Warrior asked me if Joel would be willing to share his easy brownie recipe.
Here it is for anyone who has to eat gluten-free, sugar-free...

Peanut Butter Brownies

1 C. butter
2 C. sugar ( Joel used 1/2 up to 2/3 cup organic maple syrup) You could use Agave nectar also.
8T peanut butter
4 slightly beaten eggs
2 tsp. vanilla
1 1/2 C. flour total ( Joel used 3/4 C. gluten free oat flour he ground himself and 3/4 C. brown rice flour)

Blend each ingredient as it is added. Grease and flour 9x13 pan. Bake at 350 for 30 minutes.

Enjoy!

Saturday's Scribbles

2009-12-12T11:08:00.004-06:00

Winter is here in full force. This photo is of the back door to our garage. We had a strong storm on Tues and Wed. which brought nearly 11 inches of snow with winds at 25-35mph and wind gusts up to 52mph! Needless to say, everything closed down for about 36 hours. So grateful for our warm and cozy home. Our Christmas tree on our back deck not only stayed upright in the stand Joel screwed into the deck, but it is now "flocked" thanks to Mother Nature.

Joel and I had been talking about who we could hire to do the driveway as it takes so much of Joel's energy~ even with the snowblower. Wed. afternoon a young man knocked on our door and asked if we would like our driveway shoveled. At first Joel said no because he planned to do it himself (!) but I "encouraged" him to hire the guy ~ he was the answer to our morning prayers!! Joel told him we had a snowblower he could use and what would he charge for that? He named a ridiculously low price and Joel told him to come back when the storm was over and he had a deal. He came back and not only did the driveway but made a path through our whole backyard for our spoiled dog Levi, who is so little he can't get through snow over a few inches deep! We then paid him double his asking price which was a fair price we knew. He is willing to come back on a call basis ~ what a relief!

We will have the family here in just two weeks. Things are in a turmoil in the house with a new bed still outgassing in the family room and a need to shift furniture around in 3 rooms and get ready for the crew of 8 adults and 11 grandchildren age 11 and under, but with neither Joel or I capable of doing this now we find it challenging to say the least. Just one more way we feel the loss of both our health. Even with the house unsettled, we are focusing more on the family coming and spending time together. The house does not need to be "ready"...maybe some of the strong family men can do what needs to be done for us ~ and in a much shorter amount of time and no loss of energy!!

MCS causes problems too. We bought a new inexpensive toaster oven 3 months ago. Had it outside on the porch most of the fall turning it on to "outgas" the new smells...after doing this several times we brought it into the kitchen today, turned it on and it still smells too strong for me. Same with a new crock pot that is all stainless steel and ceramic/glass. It is the heating elements that get to me. Uggggggh! It will take many more months to be able to use them I am sure. MCS teaches you patience I guess. We are thinking buying used things would be a whole lot easier~

We think Joel is a bit stronger now due to not pushing with physical activity...but you never know~ Lyme is so darn unpredictable and smart...very smart~ can mutate, form protective cysts around itself, and hide until some event activates it. I read this week a comment from Kay Warren concerning her feelings when she discovered she had breast cancer and I identified with them for Lyme too. She said, "When I look in the mirror, I look normal. You cannot see that aliens have invaded my body". So true...so true.... Speaking of Lyme, if you feel led to pray, could you lift up Shannon's boy, Parker, (http://www.ticksandtrust.blogspot.com/) who is hospitalized in extreme pain with what is more than likely Lyme Disease. He is still being tested for it but it looks like that is what he has. He has gone from being an active healthy boy to a sick boy needing a wheelchair. What this family has endured is amazing.

Joel found a simple recipe for peanut butter brownies this week and substituted oat and rice flour for wheat and maple syrup for sugar. They were absolutely delicious....wow~! His creativity and determination to have real "treats" and snacks is expanding my food choices too! Nice!

I am going to order a new book for myself from Santa that my NAET practitioner mentioned and the EFT site recommends too, called "A Course In Miracles". Looks interesting! I hope it is half as good as "A Pace of Grace"....

Right now I am still reading Lucado and my coffeehouse mystery. What are you reading? Any special Christmas books?

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

Partners In Lyme: Eeyore Visits

2009-12-09T15:54:00.008-06:00

"It's snowing still", says Eeyore gloomily.

"So it is."

"And freezing."

"Is it?"

"Yes" said Eeyore. "However", he said, brightening up a little. "We haven't had an earthquake lately."

Sometimes Eeyore can be pretty gloomy...spreading a bit of doom and gloom around to his friends. If you notice though, he sits with it awhile and then finds something positive to say or just moves on.... "Oh bother" as Winnie the Pooh would say.

My emotions have been all over the board lately. Up one day down the next. Obsessing about unimportant things and losing sleep over situations I cannot control....my amygdala is on alert with neon lights telling me ...Everything is an emergency!!!! Time to panic! Time to stir up the adrenaline~ Then when I do lay and rest, I am held down unto the sofa by an invisible magnet. It took me awhile to figure out why, but slowly the fog is lifting and it is becoming clear. Joel.

So where do Joel and Eeyore come into this? Last Saturday Joel received Dr. V's assessment from our visit in Nov. and it was quite revealing. Seeing it in print and in the doctor's own words was very sobering.

It started out saying: " Follow up visit for a 63 yr old disabled Lutheran pastor." Okay, first of all how did Joel get this old???

The report went on to say,

"Joel is going to try to work an interim position. I caution him to be very careful, because there is nothing in his current activity level to indicate he will be capable of working twenty hours a week. He may be able to do sedentary work and some ministering on a limited basis."

Later in the report she writes: Assessment: Severe post-exertional malaise, muscle weakness, joint swelling, Chronic Fatigue Syndrome, memory problems, Lyme, Bartonella, Babesia, (etc.) It makes it impossible for him to work in his career. I have encouraged him to try to work part time, but it may be impossible.

While thinking about all of this, Eeyore appeared in me with negative, gloomy thinking. How can he???? When can he??? Will he???? What should we do??? I found myself shuffling around with my head down, spreading doom and gloom. Productive, right?

Here is the thing. Joel has been getting worse again, which mean I am getting worse. Because when he is exhausted, unable to do as much at home, and is sleeping nearly 4 hours a day and 8-10 at night I am doing more, wired but tired, still ~ unable to nap or rest well, and am awake by 5-6am every day. We are doing the best we can, but I find my body wanting to say, STOP! STOP AND DROP! While my mind says, GO GO GO! The best thing would be to take a big deep breath and assess the situation as a gentle observer. At least there hasn't been an earthquake lately!! ( we went through earthquake tremors while living in The Philippines ~ on an island~ in the ocean~ Okay, that story can wait for later!)

I don't like to be a spreader of gloom......and I know that when it gets to this point it is a clear sign that I am on overload and need to pull back and rest. I realize I have been saying this over and over since Joel went on disability. What is the definition of insanity? Doing the same thing over and over again and expecting different results!

Hmmmmmmmm. I have let things get out of balance in my life. As I am busy telling Joel he needs to pace and not use up his energy, get plenty of rest and naps, etc. I am not taking my own advice.

My thoughts may be a bit "scribbley"..like my brain today...but I wanted to write them down. It makes things clearer for me. It helps me to be able to say, like Eeyore~ It still may be "snowing" and "freezing" which literally it is here in Iowa...but at least we have not had any earthquakes lately!

Saturday's Scribbles

2009-12-05T08:48:00.007-06:00

As I write this, a wonderful aroma is coming from our kitchen. We have homemade chicken and rice soup on the stove. The weather just warranted soup today! It is 10 degrees Fahrenheit right now and the outdoors has a dusting of white everywhere. No real snow, just enough to make it slippery on the city roads.

Speaking of roads, Joel went on his first overnight trip in 7 months ~ he was gone only 27 hrs but we missed each other terribly. Maybe it is a sign of our age...or vulnerability. One of our grandsons had grandparents day at his school and so Joel decided to try to go. This was a big "ta-do" for him. He drove 1 hour and then napped....then drove another hour. He spent the night at their home and was able to enjoy visiting, playing games, and even heard a piano recital (at home) put on by the two girls. Our grandson played piano for him too. He napped again the next morning and then headed over to the school for grandparents day. He enjoyed it all so much and he used our digital camera to record the recital and school events so I will get to enjoy them too. On the way home he stopped and slept another hour before driving the last hour. Today he is lacking energy and needing extra rests, but he still is talking about the visit. Sometimes you just have to feed the soul too.

I have started sending out Christmas cards which is a project in and of itself. We have moved so often and have many to keep in touch with besides family. I enjoy getting newsletters myself and read each one when they arrive and then again in January's cold and unfestive days. Our annual newsletter reads more like a medical report this year, but since the last 6 mo. have been consumed with treatment I guess that is not a surprise. Next year it will be different.

It has been quiet on the blog front with what I hope is the busyness of December and not from crashes keeping everyone in a quiet state. My need for horizontal resting continues but it is not what I call a full blown relapse so I am thankful. Just in need of extra sleep and rest.

Our tree looks so good on the back deck. It has me thinking about years past when our children were young and we would head out to the preserve or a friend's tree farm to cut down a tree. Putting the lights on always seemed to provide a bit of drama, but then we would decorate it to our favorite music ~ Alabama's Christmas ...it is on a cassette tape~ no Cd's then! I still have the cassette, but seldom play it as it makes me lonely. Along with all the ornaments ~ some homemade~some special gifts, we would string popcorn and sometimes cranberries and the kids would make paper chains also. This is a tradition we started in my home and I can still see my brother-in-law sitting on the floor poking a needle through each piece of popcorn and each of us kids pulling the popcorn down the long string that covered the living room floor. We did this over and over until we had a nice long string of popcorn to grace the tree. It was a great family project which I continued in our home until just a few years ago. Maybe I will have to string popcorn for our outdoor tree to see if the birds come eat it!

Time to stir the soup! Hope you are all resting well, embracing your own memories, and enjoying the day.
Until next time..........

In All Circumstances

2009-12-03T09:22:00.006-06:00

My faith is interwoven into every part of my life, and today I need to share how it is sustaining me in our present circumstances.

Last night I was rereading my post about being in a funk. I was praying that Joel and I would find relief from our woe-be-gone attitude when a verse from the Bible popped into my mind. On Sunday as I was watching Rick Warren's services online he talked about this verse in depth. Seems I needed the lesson before I even knew it...hmmmm God is always one step ahead isn't He.

I Thessalonians 5:16-18 "Be joyful always, pray continually, give thanks in all circumstances for this is God's will for you in Christ Jesus." (NIV)

Please notice He does not say FOR all circumstances....He says, IN all circumstances. There is a big difference. Our circumstances may be challenging and overwhelming at times, but we can still find things to be positive and thankful for IN these circumstances.

I may be battling yeast and bacteria, but I have two doctors willing to help and a NAET practitioner who goes out of her way to help me. I may be in a crash, but I have a comfy sofa, warm thick wool comforter, and beautiful view to warm my body and soul. I may be Reubenesque, but I have a choice on whether to have more than enough food every day...and sweet potato pie with whipped cream is on Christmas Dinner's menu.

It is the same for Joel. He has the privilege of disability....he has a part time job even if he does not have an office yet.....He HAS enough mental clarity to write sermons again or 30 years of stored sermons to reuse.....He will have an office by January.....It will get better and so will he!

Don't get me wrong.....I believe it is A-Okay to be in and acknowledge our funky moods....it is part of life. At times I would be eligible for a "Lamenter of the Year" award. We just don't want to take up permanent residence there. Focusing on the burdens only makes them heavier...so we sit for awhile with them, and then we try to empty the bag of burdens by turning our focus to gratefulness, thankfulness, and joy. The sun will come out tomorrow.....and when we give thanks in all circumstances....we are even able to see a break in the clouds today.

Right now as I look out my window it is cold, windy, and light snow is falling, and yet the sky is bright through the clouds. A bit like life isn't it.

Partners In Lyme: In A Funk

2009-12-02T15:38:00.005-06:00

Joel has had a tough week. He is in a funk. Feeling lousy, out of sorts, crabby, and frustrated. He was feeling toxic from die off and then it was also the every four weeks Lyme reproduction cycle. He did too much physical activity trying to clean his very dirty new office ( is this really his job???) and ended up with post exercise malaise big time. He actually filled a small dumpster with crap and had a load for the recycle place also. It had not been cleaned in 12 yrs. His office in New Hampton is still waiting to be packed and the church there has not set up his exit interview. Today he requested a farewell coffee with Trinity church as he feels everyone needs closure. Needless to say, it is awkward for Joel to be in this situation. I don't think anyone knows what to do with him being so sick....It is pretty much status-quo, isn't it for how most normals react and respond to people with chronic illness in general! So Joel is trying to work 20 hrs a week from home....with most of his books and material in the New Hampton office...and the St. Peter office still needing work. To add to the mix, St. Peter bought a new laptop for their church which is not user ready and Joel (and I) have no clue how to do this. He has never used a laptop and now will be adjusting to not having a mouse...GOOD GRIEF! The man has good cause to be feeling a bit "bah....humbug" wouldn't you say?!

I am in a funk because Joel is in a funk. Makes perfect sense to me! I do have the house decorated and our tree is up on the back deck with white lights twinkling away. Unfortunately I am still fighting yeast and bacteria, and will be heading back to the local doctor once again for that. I tried to take B6 with folic acid to kill off the bacteria and the large amount of B vitamins gave me back the yeast infection. I am still in a crash. I am feeling very Rubenesque, and at the same time missing last week's sweet potato pie with whipping cream! Good grief, Renee, get a grip!

When a funk fills your day the best thing to do is vegetate in front of the TV or escape in a good book with your favorite comfort foods, blankie(Woolie), P.J's and a box of kleenix. Avoid communication with other human beings and go to bed early. For good measure, sing a few bars of Annie's song....

"The sun will come out tomorrow...

bet your bottom dollar....

that tomorrow,

there will be sun....

Just thinking about tomorrow

Clears away the cobwebs

And the sorrow

Til there's none.

When I am stuck in a day

That is gray and lonely

I just stick out my chin

And grin

And say,

Tomorrow....tomorrow....

I love ya tomorrow....

It's only a day away!"

ILADS Treatment Updates

2009-11-30T11:48:00.003-06:00

Connie Strasheim has posted several interesting updates on Lyme treatments that she learned from the LLMD's speaking at the annual ILADS Conference this fall. You can read them on her blog, LymeBytes at http://www.lymebytes.blogspot.com/. Connie has written two books about Lyme Disease which are also listed on her blog. I have both and have found them to be very helpful!

Saturday's Scribbles

2009-11-28T09:06:00.009-06:00

"Sunny day...taking the clouds away...on my way...to where the air is sweet...Can you tell me how to get...how to get to Sesam Street?!!"
This song came to mind today ~ the sun is shining, the temperature will be close to 50, and no rain is forecast. A sunny day is finally taking the clouds away.

Our children were all raised with Sesame Street, which is 40 years old now...created the first year our oldest was born. They watched the show, did exercises with Big Bird to records (now that dates me) we put on the stereo, and had a few of the stuffed animals to snuggle. Ahhhh, those were the days.

Another staple in our home was Mr Rogers. Our oldest son would come home from his half day of kindergarten, and take his lunch~ which most always included a bologna sandwich and milk~ and "wind down" watching Mr. Rogers.

Speaking of TV we are sure enjoying the new show, "Castle". A lot of humor in that one. Also, White Collar on USA channel along with Monk, which is down to one final episode coming up next week, and Dancing With The Stars just finished it's season with Donnie Osmond winning the coveted trophy! He is a great entertainer. Nighttime brings Joel and I to our comfy spots and vegging in front of the TV with no energy to do anything else. I consider the TV a blessing....most of the time.

Joel is getting out the "Christmas boxes" this weekend. The decorations are actually kept in red and green tubs, but we still call them boxes after so many years of cardboard storage. We will put up our tiny tree inside and hopefully next week get the one for the deck when Joel is feeling better. I enjoy the decorations, music, Advent Candles and devotions along with Christmas programs, and services that come with the season. You will not hear "Happy Holidays" coming from my mouth. I really dislike the shopping frenzies, but plan to shop online this year again as much as possible. We really buy very little compared to most, so it does not take very long. Right now I have a Kenny G Christmas CD playing~ enjoy his music along with Yo Yo Ma and many others.

How about those White House party crashers? I think what disturbed me the most is the report stating that President Obama has had 400 times the amount of death threats as other presidents. No matter how we all voted, this is sick and wrong. What is wrong with people!!! Truthfully, this is one of those times it is embarrassing to be from the USA. The violence, fear, and hate that is encouraged in the name of politics because we live in a "free country" is NOT acceptable.

One of our grandsons is soon going to be two, and with that age of testing boundaries and exploration he hears the word "no" from mom and dad once in awhile and uses the word in his limited vocabulary, too. Right now, when he gets the answer "yes" to something he wants to do or have he pumps his arm up in the air and hollers with glee. Makes us chuckle. Grandkids are God's reward for parenting!

We bought a wool rug a couple of months or more ago and have been "outgassing" it down in the family room. Last week it seems to be OK for me so we brought it up and put in in the living room. It was so nice to have the wool under our feet blocking out the cold from the ceramic tile floors. Three days later I was having a lot of air hunger and a steady sinus headache. The rug? I sure hoped not, but by day four I knew we had to take it back downstairs. The headache and lung issue subsided quickly after that...so we will wait.... and wait some more until I can tolerate our new wool rug. Another month..or two...whatever it takes. So it is in the world of MCS.

I am enjoying a coffeehouse mystery by Cleo Coyle. I always wait until the paperbacks come out so it is not so costly to purchase them. I hope when our new library is finished I can tolerate the smells they use to clean it and be able to check out library books once again. I also am reading Max Lucado's book, "Fearless". Good insights!

Until next time....

Turkey Day

2009-11-26T16:15:00.006-06:00

Happy Thanksgiving

Joel and I enjoyed a lovely gluten-free, sugar-free, dairy limited Thanksgiving meal today. Fresh roasted turkey, squash, basmati brown rice and gravy filled our plates along with cranberries sweetened with stevia. Dessert was sweet potato pie topped with agave nectar sweetened organic whipping cream on top! Yes, it is possible to have a limited diet and still eat too much yummy food :-)

It has been an extra quiet day, as Joel has not felt well at all, napping 3 1/2 hrs and resting a lot besides. Old symptoms have returned in force but we are hoping they are short lived. I guess we are not only partners in lyme but partners in resting today too. It has been nice to visit with a few family members on the phone. In our "other life" we would always have a house full of company, so we miss family gatherings at this time of year most of all. There is something to be said, though, for a quiet celebration.

Whether you are celebrating Thanksgiving this day, or spending it in your usual routine, I want you to know that today I am very thankful for all of you who visit my blogs and bring the world into my living room. I am very blessed.

Partners In Lyme: Always a Learning Curve

2009-11-24T08:10:00.007-06:00

Joel went back to work last week part time and it went pretty well. Energy is still very limited, so he is trying to pace and still get in a short morning and longer afternoon nap. He can be more active if he keeps these naps in place. He has decided to fore go starting the other two meds until after the new year begins due to all that goes on at church during Advent and Christmas. The KEY to his better level of health has been lowering the massive doses of abx he was taking. The weeks he is on Zithromax along with Cef are more challenging, but the symptoms are no longer making him extremely ill. He detoxes and supports his liver with a "daily infusion" drink with B complex, milk thistle, Castor oil packs, and an infrared sauna. (We have the inexpensive cloth one that looks like a jiffy pop container). For now he supplements with B12 shots, adrenal support, magnesium glycerate, omega 3, Vit D, iron, and lots of probiotics and herbs for yeast control. He maintains a gluten-free, sugar free, limited dairy diet. He still continues to lose weight slowly.

I am still in a crash, but no longer calling it a relapse. Even with the dive in my energy levels, I am still thinking (cautiously) that I am at a better level health wise. The meds I take daily are Zithromax and Mepron (the lovely yellow paint anti-malaria med). I have not started the Placqinel yet, and my body totally rejected the Doxycycline. I had taken it for over 2 yrs and I think my body said enough! I still struggle with exposures taking energy from me, and I must be careful what I eat. I can now take several supplements such as B6 complex, B12, magnesium glycerate, Vit. D, amino acids, Vit C, and CoQ 10. Trufiber and Truflora plus other probiotics and herbs have helped me manage intestinal yeast. I still need to take most everything with food, thus the added dilemma of weight gain. After a lot of research I decided to try taking folic acid to help with the ongoing yeast and bacterial infections. It is helping a lot! I don't know how but it is. To detox I take Ultra Clear and Adva-Clear daily and use Castor oil packs over the liver. I cannot tolerate the smells from the cloth sauna yet. Over all the "load" my body and liver carry have diminished and I can tolerate a few exposures better now. Dr. V said it would take an average of 7 yrs to recover a lot of my health with MCS and some of my reactions will never go away. Like the flu type symptoms I am having right now from mold exposure..... I still rest at least twice a day and am in bed by 10 every night. I use CDs to relax and meditate, and EFT. I try to add yoga stretches, breathing exercises, and affirmations. We both have NAET treatments as often as possible. Pacing and resting are vital.

Improvement in any way, shape, or form is to be celebrated so we are very happy about taking steps forward. It is a marathon and the "rules" are always changing, so being flexible and having a doctor who stays up to date on treatment changes is important. We continue to do the best we can. It is all we can ask of ourselves and those who are trying to keep ahead of such smart bacteria.

Saturday's Scribbles

2009-11-21T09:27:00.006-06:00

The fog is heavy here today...so strange for November. Our temps will rise to the mid 50's for the weekend which will be good, because then Joel and I can get a bit more porch sitting in before the snows come.

Thanksgiving for Americans is only a few days away, and then Advent begins as we prepare for Christmas. Joel hopes to put up Christmas lights on the porch this weekend...well, actually that is what I want him to do! First we have to find them as we have not used them in a long time. We will put a tree up on the back deck to enjoy through the large window and patio doors. Can't have one inside the house due to my allergies to pine AND plastic! We do have an old 2 ft. plastic one we decorate for the living room. Maybe I will post a picture of it this year. I call it my "angel tree" as at one time only small angel decorations adorned it.

It has been a quiet week in some ways. This was Joel's first week back to work and even though it was only part time and he worked from home half of that....I really missed him! After 4 months of 24/7 it is hard for me to adjust to being alone again. I felt restless and out of sorts in fact. Sure glad he is only working part time for now so I can ease into spending my days with just the dog, Levi. His energy levels held up pretty good ~ we will see what comes when he is back on Zithromax.

I spent a lot of time resting, but still need more. My Lyme brain had the idea that if I had to lay, it would be a great opportunity to work on EFT. EFT stands for Emotional Freedom Techniques where a type of tapping that is like acupressure, is used on your body's meridians which helps open the subconscious to healing emotional events past and present that may block the energy from flowing freely through your body and cause physical problems. (phew) I have used it to get rid of a MCS headache, anxiety, sadness, my recent heart symptoms, etc. When I first was told about this and watched the videos I thought it was a bit too weird, and for almost a year ignored its value. But as I grew to trust my NAET practitioner and her knowledge about EFT, I realized this could be helpful for me. After prayer and determination, I have started practicing this a lot more. What I forgot is that it takes effort and stirs up emotions, and zaps my precious energy! As a result, my relapse continues on.....As usual it is hard for me to pace...

I am still seeing that even in a relapse it is not as bad as in previous years nor am I as weak. I don't trust it yet, but am cautiously hopeful?

I see Oprah is ending her talk show in 2011. I have watched her show since the beginning, and so have millions of others. Will be interesting to see what or rather who replaces her. Time moves on and things change! There is no denying the good she has done for others.

I used up my final gift card from last Christmas and ordered a few new books to enjoy. A couple of inspirational books by Max Lucado, a light coffeehouse mystery, a novel about the Mennonites, and a Christmas gift for Joel. The first 4 are being "outgassed" from new ink and paper smells so I can read them! I have a big Austin Air purifier that is on and we blow it at the books to ruffle the pages and air them out. Usually takes a week or so depending on how strong the smell is. Where there is a will there is a way!!!

Off to rest so I can do some porch sitting later today.
Until next time.......

Reflecting, Reviewing, Relapsing,Resigning, Restoring

2009-11-17T08:48:00.009-06:00

This morning I took a bath. Simple. Easy. But today it took all my energy and I ended up flat with intense symptoms. I have not wanted to accept that I am once again in a relapse ~not after 3 months of better health...the new Renee was talking on the phone more, doing more things around the house, getting out more, just enjoying life! But here I am. Reflecting, reviewing, relapsing, resigning myself to it, and soon, hopefully very soon, choosing to believe my body will be restored once again.

The past year has brought with it many new health issues, some very challenging, some not. The abnormal EKG in January.......the cataracts and high eye pressure in April.....the H Pylori stomach bacteria in June....the vaginal yeast and bacteria infections in August....the boils in September.....a severe crash and now the heart symptoms from medication in November. The physical problems are just one part of the equation ~ we can add the death of my BIL who helped raise me in April, Joel's Lyme diagnosis in June, his poor health levels and eventual disability in July, our youngest child's escalation of mental health issues in August involving her three small children, and Joel's resignation from the church in November. Usually I am pretty good at getting back up after being knocked off my feet, but this week I don't have the strength to get back up. Emotionally, mentally and physically (literally) my heart is heavy and my body is weak.

I am in a relapse. Again.

When I am in a relapse I look back to reflect on what put me there. Thus the list above that gives me a general summary of the year's stresses. S T R E S S is the biggest factor for my low levels of heath again. Along with that is how I deal with stress....I can control some responses but I also know I cannot control other responses because my body is not well. Stress puts me into an adrenaline surge and if it is ongoing stress it is hard to move out of that. After a period of time it takes its toll physically and if I do not or am unable to heed the warning signs I end up on my sofa or in bed. Lest I forget, physical stress also affects my body...bacteria die off....pushing too hard....reactions to drugs.....

I felt so good in August, September, and part of October~ a door opened and I was able to taste freedom once again. Oh it tasted so sweet~~!!!!! I felt such joy to be able to function at 35%...I felt like Superwoman! And then an accumulation of stresses piled on.. partly due to my willingness to carry them around....and partly due to life being messy. Now I feel like a fragile butterfly barely able to move my wings. Superwoman is no where to be seen.

As a gentle observer I can look back and see what I could have done differently ~ but I can also see that there is really very little I have control over when Lyme attacks, CFS/ME rears its ugly head, and life throws us curve balls.

Now, what can I do to keep this relapse from eating up months of my precious life? How do I restore my body once again? Rest.....Yes, R E S T. Rest my mind, rest my body, rest my emotions. Do everything I can to keep stress away. Avoid people who take energy like a vampire sucking blood. Read inspirational material. Watch stress-free TV and listen to soothing music. Pray. REST .....REST......REST. Pray. Eat well. Make sure my supplements and abx are helping, not harming my body. NAET. EFT. Breathing exercises. Bedside yoga. REST. Do what I need to do while facing the reality of my circumstances. Example: My sweet sister Jan was coming to see me this week. It has been too long. But I don't have the energy to even visit....so I cancelled and she is coming next spring when her snowbird days are over again. Very difficult to do, but necessary......so I will REST.

Several of us are in crashes or relapses, or just coming out of them. It is a pattern with CFIDS/ME and Late stage Lyme too. It is not fair, but it is what it is. That is why for me I need to accept where I am as part of my journey. I need to give up resisting the relapse and bow down to it for now. What I resist persists. Donna Partow says, "This is the journey I am on because.....this is the journey I am on." So simple and yet so profound. How I live the life I have is up to me. I know I am blessed to still be here. And soon, maybe yet today...or tomorrow I will choose once again to not only see my life as it is....but as it can and will be.

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!"