Lyme Disease Awareness Month: Part 5

Lyme Disease Awareness Month: Part 4

Des Moines Lyme Family

Fighting Lyme disease as a family (Des Moines)

Lyme Disease Awareness Month: Part 3

Lyme Disease Awareness Month: Part 2

Lyme Disease Awareness Month: Part 1

Reading never gets old

Ham and not the meaty kind.

Ham - to act in an exaggerated style, usually to make people laugh.

Chocolate 'Stache

“Strength is the capacity to break a Hershey bar into four pieces with your bare hands - and then eat just one of the pieces.”  Judith Viorst

Snowy Summer days

Wes and the children made it outside to build a snowman one weekend. Wes did most of the work, so that was a good workout. Olivia was outside for the whole process.

Here comes helper #2, finally! Watch out!

Marshall looks as if he's really "getting into it" here, but he had just fallen. It's hard work walking in snow with little legs.

The final product looks like a snow-dog.

 Just because we might be getting up to 50degs today, here's a picture to help us along.

When ALS & MS are Lyme

I found two articles today that piqued my curiosity. I will need to find some time, that I don't have-ha, to read through them carefully. My skimmed overview showed documents that were well-researched with multiple resources. I also appreciate the fact that the author explains why she researched the information and wrote these two articles. There is no hidden agenda.


The first book "When ALS is Lyme" 'Examines... the link between ALS and Neuroborreliosis.'

The author writes "I never pick an opinion based on what I'd like to be true. I base my opinions on a genuine curiosity into discovering the truth. I have Lyme disease myself. 

For lack of much help from the medical profession, in my quest to self-treat myself out of this mess, getting informed about this subject meant turning it into a special interest involving 15 years of self-study in medical literature, but also digging through countless anecdotal reports by patients, original research and my own experiences and treatment experiments with Lyme disease. Not to mention my communications with microbiologists. 

Now, when most people say they've "studied medical literature" they mean they read an abstract here and there. When I say I studied the medical literature, I mean that instead of doing all kinds of nice things in summer, I spent it mainly purchasing studies and going over them with a fine-tooth comb, then correlating them with other studies. 
Eventually, out comes a book or an article, such as with my free eBook on Lyme disease as a frequent cause of ALS and my "bestseller" (> 15000 Facebook likes, yay!) on Lyme as the cause of Multiple Sclerosis." 

The second book "Multiple sclerosis is Lyme disease: Anatomy of a cover-up" delves into the concealment 'since 1911 that Multiple Sclerosis is caused by a bacterium' and therefore can be cured.

The author says, "I intended to write a book on Lyme as a major cause of Alzheimer (Microbiologist Judith Miklossy found that the brains of Alzheimer patients contained in 25% of cases living Borellia bacteria, and in 75% of cases oral Treponema (also spirochetal bacteria)). But since I got lambasted beyond the pale when I started giving away my Lyme/ALS book, I decided to leave the connection between Spirochetes and Alzheimer as an exercise for the reader. I think I made my point very well - my article about Lyme as the cause of MS contains so much hard evidence that it is impossible to dismiss as "opinion" or "conspiracy theory"."

Source of author's quotes linked here

Doctor Treatment

Has your doctor treated you this way as shown in this humorous clip?

LymeDad's letter to daughter

This is a letter a father wrote to his daughter suffering from Lyme disease in 2007.

https://www.lymedisease.org/lymedad/

“Dear Family of a Lyme Disease patient,

I am writing this letter to all parents and family members who are witnessing their children, wife, son, father, aunt, uncle, cousin, etc. struggle with Lyme Disease.

I am one of you.

For more than 6 years my daughter has suffered through this ugly, dark disease.

She has experienced horrible migraines, severe joint & muscle pain, nausea, vomiting, extreme fatigue and loss of her ability to speak or think logically (these are just a few of her symptoms).

She has become unable to work. She has been forced to move back into our home at the age of 23 (she is now 29). She has virtually lost her 20′s, one of the most productive and exciting time of her life.

We have taken her to every known medical specialist in southern California as well as three different general practitioners.

She has been diagnosed, at differing times, as having Chronic Fatigue Syndrome, Chronic Pain Syndrome, Fibromyalgia, Lupus, Psychosis, and MS (please notice that all of these are either syndromes or descriptions of symptoms; none of them are diseases).

For the first 4 years of her struggle, I was not a good parent, even though I thought I was.

My daughter didn’t have any outward sign of her illness. She looked “normal”. After many, many blood tests, MRIs, CAT Scans, x-rays, psychological tests; everything came back “normal.”

I was, and still am, one of the world’s biggest cynics and skeptics (I’m originally from Missouri – so “Show-Me.”)

Surely if you are as sick as you say you are, there must be something that will show up in your blood tests or on x-rays.

You can’t possibly be this ill and not have something tangible to show for your symptoms.

You’re either just faking it or you’re lazy or it’s psychosomatic or you’re trying avoid the real world.

Get off your lazy butt and get some exercise or get a real job or face up to life like the rest of us.

That’s the way I approached her illness. It’s time you took control of your illness and will yourself well.

I was so far off-base. It took an outstanding Lyme Literate Medical Doctor to show me the error in my approach with my daughter and to show me the reality of this disease.

My daughter and I have both suffered because of my ignorance. (I’m not saying all of you are ignorant, I’m saying I was ignorant. To be ignorant simply means to be uninformed not stupid). I am still working to rebuild the closeness we had before Lyme.

Lyme Disease is real, the pain is real, the problem with logical thought is real, the lack of energy is real, etc., etc., etc.

If your child or family member has been diagnosed with Lyme Disease, they are just as sick, if not more, than someone who has a more “traditional” illness, like Lupus or Multiple Sclerosis or Cancer.

I’ve done all the study, I’ve been with my daughter at all of the appointments, I’ve watched the misery she’s been through.

Hey they just can’t help the way this disease treats them. It’s not their fault.

We as family members need to be there to support them. They don’t need our pity. They don’t need our skepticism. They don’t need our criticism.

They need our understanding.

If you as family members will take the time to study this disease, you’ll see that it is real. The little buggers who have invaided their bodies are real and they are making our loved ones sick.

Please spend the time you currently spend trying to figure out why your loved one acts the way they do really studying the disease. There are volumes being written on the internet as well as new books being published everyday on this disease.

We can’t possibly understand the way they feel, not unless we have the same bacteria in our bodies.

My daughter has a long way to go before she’s back to where she was 6 years ago. She has a lot of work and pain to endure before she can get there.

She certainly doesn’t need someone who claims to love her causing her any more pain than she has already.

Families, from one who has been in your shoes, please let them know you love them.

Let them know you’re there to help them.

Let them know that there’s no way you can possibly understand their pain, but that you will try to understand their illness.

I think one of the most important things I’ve come to learn is that my daughter’s disease may be God’s way to teach me a lesson.

I’m not saying God gave my daughter Lyme disease, but He may be using this disease to teach me how to love, how to be patient and how to be more understanding.

I wish you all good health and I hope that none of you will ever have to experience what our Lyme disease loved ones are experiencing.

Dr. Richard Horowitz Lyme speech to the Luxembourg Parliament

Fancies - creatures of habit

We are creatures of habit. Every day we get up at the same time, or snooze the alarm repeatedly, go through our morning routine; and then we are off for the day. For some that includes drinking their favorite cup of joe or jumping in a cold shower. Most routines happen gradually and take shape without one realizing it has become the norm.

Children are the same. Babies have milk and take naps on a routine, and this usually doesn’t change too much. As they get older and become more independent, the list of routines grows. As a parent it can be a shock when a simple matter of wearing tennis shoes instead of sandals throws your child into an upset outburst. Rocking the boat unknowingly takes you for a sharp turn.

As the season changes again, Marshall is the next to join in the habit breaking - “What is this boot?” and tries to take it off. He hasn’t noticed or comprehended yet that Sunday is dress-up day, so we haven’t experienced any melt-downs with that yet. Olivia is definitely aware of all her clothing and when we switch to nice dresses on Sunday versus the usual skirt and t-shirt. She usually picks a jean dress that is not really a typical Sunday dress, but it is a dress nonetheless; so I let her have a pass.

Wes’ brother got married this weekend, and I prepared for special military-style tactics (sarcasm) to encourage Olivia to wear a fancy dress. I told her we were going to a wedding party, and we had to dress up very nicely.

“Look at Marshall & Daddy!” I told her.

“See Marshall’s fancy vest and bow tie and Daddy’s fancy shirt and tie. You need a fancy dress too!” I said. She asked if she had a tie too like Marshall and Daddy, and I figured a belt/bow in the back of the dress qualified.

I artfully used tactics of imitation (like Marshall!) and told her everyone is going to be wearing their fancy clothes to the wedding, and the bride will have a fancy wedding dress! She said “Adana will have a fancy dress?” (Her name is Adriana). She was persuaded.

Olivia always wanting to array herself identical to Marshall was used to the advantage of changing up her habitual routine. Yes, we are all creatures of habit, but sometimes we can be persuaded to change course on occasion. Starting today, drop that cup of coffee down the sink. Who needs a bitter taste to start the day? 

Cold Season

Cold season is coming upon us and yet many people refer to it as "cold season," meaning it is that virus time of year. For us, "cold season" is once a month like clockwork for Marshall and Olivia. Since labor day sickness, it was a slow recovery getting back to normal and now they have come down with their customary monthly colds. 

Since labor day we have been restricting Olivia's diet of dairy and red meat. We weren't sure how she would respond to this diet, with willingness or reluctance, but she has taken to it like a sponge soaking up water. I think part of her thinks she's pretty special when she goes to daycare and she's the only one eating fill-in-the-blank, something different than everyone else.

I also believe she knows she has been feeling better. That helps me to avoid corn because I know that I will be doubled over in pain later once it hits my gut. I would think it would be the same for her.

It’s only the first cold since we have started her on this menu, and it’s too soon to get hopeful, but I am hopeful that it is already working. Every time she has a cold, she pukes. She would puke at daycare, in her sleep, etc. She hasn’t puked once yet with this one. Maybe she will with the next cold, but for now I will remain hopeful.

Deploy, Don't Destroy: Wonderware Troubleshooting

If you ever think you are interested in what I do at work, below is a how-to document I wrote and  used in the Interstates' blog. This might change your mind from wanting to know what I do, to being disinterested.

Documents like this often come after much trouble-shooting, researching, and calling support. I have always tried to document things like this for myself for future projects and other coworkers. It's mostly used for myself until more people start programming and working with the same software. It seems like the best lessons learned are the ones you experience yourself, so I like to exhaust my expansion of information before I do any research or call support.

Deploy, Don't Destroy: Wonderware Troubleshooting

"God in His wisdom made the fly, and then forgot to tell us why."

When the children were still recuperating and getting cabin fever, we ventured outside for a little while before those nasty black, biting bugs sent us back inside, If it's not one bug, it's another. God could have let all bugs drown in the flood, and I would not have minded one little bit.

Going outside with Daddy the next day but still not feeling 100%.

Found some boots for Marshall at the second hand store, but they are a little too big yet. I had to buy some cowboy boots that he could wear now through next spring too because when I try to get Olivia to wear her cowboy boots, she asks, "Is Marshall wearing his?" When I tell her he doesn't have any, then it's a no-go. She has to be exactly like Marshall!

Marshall learning to "dance." 

Found a record player and so we "danced" to some classical music.

Marshall is dancing to "Return to Snowy River" soundtrack.

Labor of sickness 2016

Labor Day weekend turned out to be a labor in sickness. Both children went through vomiting plus a week sickness/recovery. It took longer for Olivia to get better than Marshall and in the process, we believe Olivia is allergic/intolerant to red meat. Since she has had ongoing issues with sickness, we are hopeful that this will help with that.

Also Wes and I were feeling sickly, so we stopped taking our medication for a few days. We each noticed return of or influx of symptoms. GI cramping, nausea, depression for me. Wes also had a herx after going back on medication and during an increase of one of his medications.

One lesson learned for me during this rough time was from Olivia. In one of her roughest days of puking, she had just finished another bout of it. She promptly laid down in bed next to Marshall, placed her arm over him and smiled at him. In the midst of not feeling well, she was caring for her little brother.

When we are feeling like we are on our last rope, we can just look to her attitude in the midst of her ongoing struggles.

We are not living, we are merely surviving.

Some people make a bucket list for a number of reasons as if their life is somehow not complete,  not fulfilled, and void of meaning until they've done some wild, daring, adventurous activity. They put on the list things like skydiving, zip lining, traveling across the country, run in a marathon, etc.

When you don't have your health, your bucket list becomes the simple things you didn't used to value. Waking up feeling well with no pain and no sickness. Being able to get out of bed. Being able to go outside. Being able to go to work, school. Being able to spend time with family and friends.

Things can happen that make you realize that can change in an instant. I was up in the night and heard Wes go to the bathroom. Then I heard what sounded like Wes crashing into the toilet. I couldn't get the door open and was worried he had fallen and was blocking it.

He was trying to answer my questions, but he was very confused. He tried to open the door too, but he couldn't. After pushing against the door, it finally released. It had gotten wedged tight with his fall. He crawled partway back to the bedroom, and finally attempted to get up and feebly walk the rest of the way. He still does not remember what happened.

He told me later, "We aren't living, we are just surviving."

Surviving with Lyme.