the Van Dyke's

the Van Dyke's

Thursday, June 28, 2012

Tomorrow...

Tomorrow is June 29 already... where has the month gone?!?! Tomorrow also marks a special day for us, as we celebrate Chloe's 3rd birthday. I can't even believe that my itty bitty baby is going to be 3 already! We have a fun Mermaid Pool Party planned for Saturday, and she is EXCITED!!! Tomorrow (are you sick of me starting a sentence with "tomorrow" yet...LOL), well, tomorrow is not only her birthday, but it's also a day we've been waiting for since March 7. Claudia is scheduled to see Dr. Cassidy @ DeVos Children's Hospital regarding her Scoliosis. We've been told the appointment will last at least 2 hours, plus we have to be there a 1/2 hour before the appointment... I have a feeling it's going to be a long day. While I myself am very nervous and anxious about tomorrow (there's that word again), I am also very relieved that Claudia is being seen by the best of the best. I have heard nothing but wonderful things about DCH, and I am very confident that we'll get answers and have a plan of action to help treat her Scoliosis. We would GREATLY appreciate extra thoughts and prayers tomorrow as we begin yet another new journey for our family.

Please continue to pray for Jon too. He is 4 days into his antibiotics and he is feeling the exhaustion aspect of the meds. As much as I hate seeing him so sick, I know the meds seem to be working and that's what we want! He hasn't worked full days the last 2 days, but that's been a blessing considering how hot it is here, and he's tried to use the down time to rest. We are also going to be heading up to the Mackinac Bridge next week with Jon's parents. It will be SO good for us to get away for a few days... we desperately need a little break.

We have a very busy weekend ahead with the doctors appointment and then Chloe's party on Saturday, but we are doing our best to Make EVERY moment count!!!
 

Wednesday, June 13, 2012

feeling a little like Rusty the Dog...

Jon and I saw this video on the news tonight... 
Jon right away said, "hey, that's exactly how I feel." 
Thought we'd share it with you... 
 

Sometimes you just have to laugh about things... 
it's a lot more fun than crying.

Tuesday, June 12, 2012

Lyme Overload...

My mind has been overloaded with Lyme today, and I'm going to apologize ahead of time, but this post is going to be long, sorry. My afternoon started out at Hemlock Crossings Park for a Lyme Disease in Michigan Program. It was informative about ticks, their habitats and prevention. I knew about 95% of the information because of the research I've done on the nasty disease.

Photo courtesy of CDC website
It totally blows my mind how something SO extremely tiny can make someone so sick. Ugh, I really don't like {lyme} right now!

I ended up taking home a brochure that has some good information in it... if anyone wants to take a look at it, let me know and I will gladly share... (don't everyone call me at once though, I only took 1 copy... LOL!!!) I know a lot of this info seems redundant to most of you, but this blog is for Jon and I too, it's our way to nicely organize our thoughts, frustrations & information. That being said, I apologize if I bore you with my details sometimes. I'll be honest, it does seem boring, but when you're unwillingly put smack dab in the middle of a journey it's important to educate yourself... and others :)

So that's your 1st lesson in Lyme for the day... now, onto the doctors appointment. This is where I really learned a lot. I know a lot of this isn't going to mean a lot to you, but again, it's a place for me to keep my thoughts and newly learned knowledge. Plus I realize that MANY of you do enjoy learning new things, after-all you're supposed to learn something new everyday :)

I had educated myself quite a bit about Jon's new meds. In my research I had come across the word "Herxing". I know many of you are going to be amazed by this part, but I didn't tell Jon about it... that's right, I kept my mouth shut... hard to believe, I know... LOL!!! Here's a good explanation I found on herxing...

"Within a few days (usually one to three) after beginning antibiotic therapy, it is common for many patients with Lyme to suddenly begin experiencing a worsening of their symptoms. In some cases, this experience can be extremely uncomfortable. Additionally, it can also be mistaken as an allergic reaction to the antibiotic drugs that have been prescribed. In actuality, this reaction is a positive sign that the antibiotics are working and is known as the Jarish-Herxheimer reaction. Commonly this name is abbreviated to Herxheimer, or simply 'Herx'.” 

Here is a link if you want to read more about it, click LymeBook.com

It really bothered me not telling him about this, but I knew his appointment was coming up soon and I just didn't want him to worry about it or even anticipate the symptoms. When we met with the doc he asked how he was feeling. When Jon told him he had been having a really rough week the doc got a smile on his face, and right then I knew why... Jon is "Herxing". It really sucks that Jon has to be in SO much pain, but it's {hopefully} a really good thing in the whole scheme of things. Jon has to continue the meds through Sunday, and then he will get a week off from the Metronidazole. After that week he will start another 2 week cycle of it. It's crazy to think that it has to get worse before it will get better, but his doc seemed very happy with the results, and we just need to have faith that good things will come.

Jon's doctor went over the results from the Western Blot Lyme Test, and given the facts, Jon's doctor feels very certain that Jon has "Chronic Lyme". What many of you probably don't know is that the treatment for Chronic Lyme is quite controversial. When you look at all the facts, it's hard to believe that some groups don't really believe in "Chronic Lyme". I'm seeing the results right before my eyes, and it sucks!!! Another thing that sucks about it, is that because of the controversy, many insurance companies will deny treatment. Ugh, it's a vicious battle!!!

His doctor shared with us his willingness to provide any support he can for Jon. He highly recommended 2 different doctors. Dr. Michael Ledtke in Saginaw, MI and Kenneth B. Liegner, M.D., P.C. in Armonk, New York, both of who he has met. We've also heard from others that they are the best of the best when it comes to Lyme. It was very bittersweet hearing his recommendations. At this time, we both agreed that since Jon's body seems to be reacting well to the antibiotics (even though he is herxing right now & in A LOT of pain), that we are going to wait before we pursue further avenues, and just pray, A LOT!!!

Our doctor really is amazing!!! He actually listens to us and answers our questions with sincerity. We go back in 4 weeks to check-in, and that will continue until Jon is symptom free. He did share with us that if Jon was maybe having 1 good day a week right now, that he would be happy if Jon could have 2 good days in a week. I'm pretty good at math, and that means if he has 2 good days, that he could still have 5 bad days. Yes, that's pretty hard to stomach, BUT we are NOT giving up!!! We are going to take ALL THE GOOD DAYS WE CAN!!!!! We are going to Make EVERY moment count!!!

Blessings!!!!

p/s... I apologize if there are any parts that "don't quite make sense"... it's been a long day, but I wanted to get this posted today, while it was all fresh in my mind.



anticipation...

Jon has a doctor's appointment this afternoon at 3:30. We have quite a bit to discuss since he's been feeling so yucky this week. Yesterday he couldn't even go to work because of the pain and the stomach issues. He managed to get to work today, but was in a lot of pain. Thankfully his stomach was doing better today. Not sure we'll get a lot of answers today, but we'll just have to wait to see what the doc says. Any extra thoughts and prayers would be greatly appreciated today. I'll update later today, once everyone is snuggled in bed.

Sunday, June 10, 2012

Lyme 101

I'm sure there are many of you that read my blog on a regular basis, yet really have no clue what Lyme Disease really is. Jon and I have learned so much already about Lyme, yet we still feel like we know so little. I came across this during my research and thought it would be informative to many of you. This was taken from the LymeLight Foundation... hope it answers some of your questions.


  1. Lyme disease is a world-wide infectious disease and has been reported in all 50 states, 25% of the reported cases are children. Lyme disease had been found on every continent but Antarctica.
  2. Typically Lyme disease is transmitted through a bite from an infected deer tick. These ticks, often the size of a poppy seed, can leave an undetectable bite.
  3. Fewer than 50% of people infected get the bull’s eye rash. Some develop flu-like symptoms a week or so after becoming infected, however, many people are asymptomatic but can develop Lyme symptoms months, years or decades later.
  4. Common Symptoms include: fatigue, neck stiffness or pain, jaw discomfort, muscle pain, joint aches like arthritis- typically in the knees, swollen glands, memory loss, cognitive confusion, vision problems, digestive issues, headaches and fainting.
  5. The Lyme spirochete bacteria is hard to detect and hard to kill. Lyme disease is growing at epidemic proportions in the United States.
  6. It is called the great imitator; looking like many other health problems (Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, Bells Palsy, ADD, MS and Lupus).
  7. The medical community is divided over the diagnosis and treatment guidelines. Health insurance often doesn’t cover the treatment for Chronic Lyme disease.
  8. The standard and most commonly prescribed for diagnosing Lyme test is the ELISA test. This test, often not sensitive enough to detect Lyme, can produce a false negative. The more sensitive test is called the IgG and IgM Western Blots test. The preferred testing labis IGenex Lab in Palo Alto. www.igenex.com
  9. If you suspect you have Lyme, contact a LLMD, (Lyme Literate Medical Doctor). Informative websites on the disease: www.ilads.org, www.lymedisease.org, www.lymediseaseassociation.org, www.igenex.com, www.underourskin.com,
  10. A recommended book to read: Cure Unknown by Pamela Weintraub and a recommended DVD is Under Our Skin.
Phew... I feel like I'm throwing a lot of information at you, but I do truly hope it's helpful to you. I have watched the DVD "Under Our Skin". If you'd like to watch it let me know and I can hook you up.

We hope everyone "Made EVERY moment count" this weekend!!!

Saturday, June 9, 2012

exhaustion...

I'm not going to lie, this past week has been tough. Jon's body is trying to adjust to his new meds. He's had a lot more pain this week and is dealing with severe exhaustion. I actually started this post a few days ago, but could never "hit" publish because every time I re-read what I wrote I sounded like a "debbie-downer". Jon's been able to work this week, but by the time the poor guy gets home he is beyond exhausted and spends the majority of his night confined to a chair or the couch. One night he even slept through dinner because he was so exhausted. He's also had an increase of pain in his hands. He's been pushing through the pain and trying to get the pool and backyard ready for the girls' to enjoy. He wouldn't be as far as he is if it wasn't for my brother helping out. The pool is officially full and the pump is running, but the water is cold and the backyard is still a "work in progress", but it's all coming together. While it's all coming together, it also takes a toll on him. This is how I just found him...

 

yup... fast asleep in the hammock swing. While I personally think he looks cute out there and the girls all got a kick out of seeing him out there, it's still heartbreaking to me. He used to be able to keep busy all day, but now that's just not the case anymore. 

It's hard, but we are grateful for what he is still able to do, even if it's much less than before Lyme joined our family. Things could be so much worse. An inspirational friend of mine, that I met a few months ago, lost her husband to cancer the other day. For 2+ years they fought through the journey of cancer, and every time I talked to her or she updated his Carepage she always said, "Make EVERY moment count". Those 4 words have been a constant reminder that we really do need to "Make EVERY moment count"!!! While our hearts are broken for our friends, and our thoughts and prayers are with them as they grieve, we also want to carry on the legacy to "Make EVERY moment count". So today as you enjoy the beautiful weather (here in Michigan anyway), take a little extra time to "Make EVERY moment count". Those moments will forever live on in your hearts... blessings to you all!!!

Monday, June 4, 2012

Learning Limits...

Jon learned a good, yet hard lesson this weekend. He is so anxious to get the pool open and the backyard looking nice again. My brother was kind enough to help him out A LOT this weekend, but by Sunday morning, Jon was in pain. He tries to hide the pain and exhaustion, but he can't hide it from me. He definitely over did things this weekend. Amazingly he managed to get out of bed this morning for work. His dedication and positive attitude to fight through the pain seriously amazes me. I know deep down he would have loved to have just said "forget it, I'm not going to work", but he didn't. Yesterday he tried to take it easy, yet I busted him mowing the lawn in the afternoon... LOL!!!

Today he adds Metronidazole to his daily med routine. We've been told that this one can really mess with his stomach. We are crossing our fingers that it doesn't. When I picked up the Rx, the pharmacist told me that if he drinks any alcohol while taking this it will cause "projectile vomiting". Thankfully Jon is not a drinker, or we'd be in trouble. Projectile vomiting does NOT sound like fun!!!

Keep those good thoughts and prayers coming. Jon goes back to the doctor on the 12th to see how the meds are working. We are really trying to keep optimistic that all will go well with this new addition to the routine. Please continue to pray that Jon learns his limits too. We are learning new things daily, some lessons are hard to learn, but those hard lessons are going to make us stronger... I hope...

much love from our home to yours...