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.

Symptom & random thought

Last night I expected to not have a full night of sleep because Marshall was sick. What I didn't expect was that he would sleep through the night, but I still would not. My carpal tunnel flared up two nights in a row. Times like that you wish you could cut off the offending hand/leg/etc. I've also thought about those who have lost limbs and experience phantom pains and itches because their brain still thinks it is there. I don't think I would be any better off as Lyme can attack the brain; I would probably still have carpal tunnel pains as a brain message.

Imagine Lyme

Imagine having never seen a tick or rash.

Imagine the foods you love suddenly causing you to become ill.

Imagine you can't sleep, but you're so exhausted, for multiple nights on end.

Imagine you can't sleep from pain so distressing(10/10) that it feels like someone is stabbing you with a knife and no pain medications help.

Imagine your heart beats so hard you feel as if you have to catch your breath and you weren't running a race, you were sitting.

Imagine you've suddenly forgotten your name and after you finally remember, you can't say it out loud.

Imagine gas/stomach pains so severe it feels like a grapefruit moving through a straw.

Imagine you've never had issues talking in your life before, but now you can't stop stuttering.

Imagine somewhere you've driven every day and now you can't remember how to get there.

Imagine that your stomach is on fire.

Imagine that your joints feel swollen, look swollen, and you're 30.

Imagine that these are just a small handful of hundreds of possible symptoms with varying severity for people who suffer from Lyme disease.

Imagine that a doctor tells you to avoid Mexican food.

Imagine that you've told a doctor all these symptoms, and he tells you it's an ulcer. Repeat visits he prescribes continued doses of said ulcer medication when it has never helped.

Imagine that someone tells you that Lyme is no big deal.

Imagine that it gets worse.

Lyme Disease is colorblind

A boy's imagination

the neighbors' dog

That moment when you're outside and you see your daughter playing with rocks, and she comes up to you and says "My hands are dirty," and you thinking it's mud, do nothing, only to walk over where she was playing 10 minutes later, and you realize she was playing with dog poop.

ILADS press release

International Lyme and Associate Diseases Society press release on the Proposed Rule of the Centers for Medicare & Medicaid Services. Link Below.

ILADS Statement on CMS Proposed Rule Concerning Antibiotic Stewardship

Zoo & Piano

Here today, Lyme tomorrow

Someone told me I should not tell people that "I'm OK" when they ask how I'm feeling as this lessens others' struggles who also suffer from Chronic Lyme disease. I'm not sure why I always say that. Maybe it's because I often feel/felt a little under-the-weather due to Diabetes, and so it's more habit. 

I decided today I would talk to the internet wall that I can't see. Today was mostly like all other days of feeling so tired I can't concentrate and feeling thick-minded and dumb.  Then started the stomach bloating which turned into some intense gas pains. Would these gas pains run their course or turn into something worse?  

They decided to turn into stomach cramps/gas pains so bad that it felt as if my digestive tract was going to explode. It makes my head feel white and hazy, and makes me feel that I could pass out from the pain. This usually turns into a bathroom visit that feels like burning in the digestive tract. You would think that after this would be relief, but the bloating/cramping continues and so do the bathroom visits.

Usually I can pinpoint this to eating corn, tortilla chips, popcorn, anything with corn, etc; but sometimes it's random.  No corn on the cob for me this summer or maybe ever again.

Hopefully this week continues better for Wes and I as he also had a rough weekend.

On a positive note, I think Marshall gained another 5lb today! I can't hardly pick him up anymore.

Mid-Summer Fun

What to do when you lose power during a storm:

A Growing boy must eat.

Fitting that I got the top fortune, and Wes got the bottom, although I don't think he's been enjoying Lyme.

Proof is in the pudding/picture that Marshall weighs as much or more than Olivia.

Olivia asks a very serious question, "Is this mine?"

It needs a couple repairs before it can run, but it still provides entertainment.

After a hot day of swimming, lawn mower rides!

Pre Summer Fun

What we do for fun:

Life

"When I was your age, I walked uphill both ways in snow to school!"