{HOPE}

So often I find myself coming here to pour my heart out... this morning I'm here to do the same, however this time my heart is filled with HOPE!!!

Life has been a whirlwind of ups and downs for us this past year, and while there are MANY downs I would love to forget, it's all part of our journey.

Last Sunday was a horrible day/night for Jon. I put out a plea for prayers on Facebook and we were blessed by those thoughts and prayers... THANK YOU!!!!

This week, unlike so many, has been filled with HOPE and it feels good!!!

Jon is such a fighter!!! He continues to amaze me daily. He needs to learn to not over-do it, but that will come. His spirits were also greatly lifted when his boss came to him this week and gave him a big raise. It was just the boost he needed!!! He was filled with HOPE and it felt good.

On Thursday a good friend of mine offered to walk in Ashley's Life Over Lyme Walk/Run 5K with me. I quickly printed off the registration forms, and got the girls and I ready for the fun event. We were filled with HOPE in so many ways that day. Seeing someone who at one time was wheelchair bound by Lyme to now running a 5K filled our hearts with HOPE. Meeting her family and doctor also filled us with HOPE. While we wholeheartedly trust Jon's doctor, it was great to meet someone else who may also be able to help Jon. It's a new possibility when all else feels hopeless... it was HOPE!!!

The walk not only brought us HOPE, but we made great memories, filled with LOTS of giggles and some major encouragement (thank you Rachel)!!!

My friend Rachel, her darling daughter, my girls and I before the 5K.

The girls and I with Grandma Van Dyke... I am SO proud of my Mother In-Law!!!

After the 5K...

WE DID IT!!! 1st 5K was a complete success!!!

There were also some "behind the scenes" moments of HOPE this week. Prayers were answered, new friendships made, lots of love shown & many memories made. While a week ago I sat here feeling so helpless, today I sit here filled with HOPE, and gosh darn it... it feels GOOD!!!

If you were someone that sent us a good thought this week, or said an extra prayer... THANK YOU!!! It's because of God and the wonderful people he's brought in our lives that we are blessed beyond words. Lyme has changed us forever. We know the "UP" moments are many times forgotten, but today we are reflecting on them and giving thanks!!! Thank you from the bottom of our hearts for giving us HOPE!!!

With all of our love... and appreciation!!!!

the Van Dyke's
{Make EVERY Moment Count}

Life with Lyme

It sure isn't a walk in the park, that's for sure!!! Once again we're smack dab in the middle of this battle with Lyme. I've had a few people ask how Jon's doc makes his diagnosis, so I thought I'd explain what goes on at each appointment.

Every 4 to 6 weeks Jon sees his doctor. All the normal office routines take place, as well as a mile long list of questions. The questions never change, but Jon's answers do. The doc takes notes on all of Jon's answers and then compares the results. 

Jon has a confirmed diagnosis from IGeneX, Inc, and his doc is following treatment plans accordingly. For the last 6 weeks Jon's Lyme symptoms were minimal compared to his co-infection (Bartonella's) symptoms, so we were actively fighting the Bartonella. At Thursday's appointment Jon's Bartonella symptoms were improving (not great, but improving), but his Lyme symptoms were in full force again. Jon's rash was also more bothersome. Here is a picture that looks very similar to Jon's. This is NOT Jon, but I wanted to share what his looks like to give you all an idea. When Lyme is attacking Jon's body the rash grows and itches horribly. Unfortunately not all Lyme patients get the rash, many don't even know that they were bit by a tick.

Jon's rash looks VERY similar to this rash...

For the next 6 weeks Jon will be doing Pulse Treatment to kill the Lyme & Bartonella. Daily he will take his Bactrim for the Bartonella and then he will add Metronidazole for 2 weeks, then he will switch to Minocycline for 2 weeks. This will continue for the 6 weeks, and we pray that it will kill both the Lyme & Bartonella. If this treatment does not work then we will talk about a new line of treatment. As Jon's doctor finished his list of questions and physical examine, he sat back on his stool, pushed the computer screen out of the way and looked at both Jon and I with a perplexed look. It's so frustrating that what works for some doesn't work for others. Oh how I wish there was a miracle drug that would kill the Lyme and give Jon back his life. Yes, we are striving to live life to its fullest, but it freaking sucks being in the middle of this!!!

I LOVE MY LYMIE!!!

Please continue to pray for Jon and our family...
Pray for:

• Jon's physical health especially his joints in his fingers & elbows, his back and his feet.

• Jon's short term memory issues, they come and go, but are becoming more bothersome.

• Jon's treatment... he's going to be hit hard with large doses of antibiotics, pray that his body can handle all of the meds.

• The girls, they know daddy is sick and have so far handled it very well. We don't hide the sickness from them, but we do protect them emotionally from the stress of this nasty disease.

• Our marriage... believe me, it's not all sunshine and rainbows over here. The stress of this disease on our marriage gets the best of us at times, but at the end of the day, Jon and I both know that we are in it together. We made that commitment to each other 11 years ago and it holds true now, more than ever!!!

• My mental well being... Lyme stress is not the only stress I'm battling these days and I could really use extra prayers to keep it all together and not have a mental breakdown. 

In closing I just want to thank everyone again for all of the support and love. When you are struck with sickness you find out quickly who your true friends are, and I have to say we are truly blessed. A special thanks to the my dear friends who had been that shoulder to cry on, whether it's literally a shoulder to cry on or just a simple text at the end of the day, THANK YOU!!! 

Enough is enough... time to get off this computer and Make EVERY Moment Count. 

Much Love,
Jenn

{Chronic Lyme with co-infection Bartonella} the "NEW" diagnosis

Jon and I celebrated 11 years of marriage on March 16. We were able to travel north, while making stops at the new family cottage and then settling for the night in Traverse City. It was great to get away. Special thanks to Jon's parents, and some friends... it would not have been possible if it wasn't for those special people... THANK YOU!!!! 

   
While we had a wonderful time away, we quickly became overwhelmed with the diagnosis of Bartonella with the Chronic Lyme when we returned home. One step forward, followed by 3 steps back. Again, it's so hard to believe something so tiny (damn tick) could cause so much destruction!!!

It doesn't help with all of the medical costs. If you follow me on facebook, you know what I'm talking about. $400 (after insurance) for a months supply of just one med is outrageous!!! Thankfully Jon's doctor was kind enough to try him on something different to help us with the financial cost. We are very lucky to have such a wonderful doctor on our side. So far the new meds are ok, but also come with their own list of side effects. Poor guy is a mess inside. 

Jon went back to work a few weeks ago, but it was only on an "as needed" basis, and he was only working 8-10 hours a week, if he was working at all. While it was great for him to have time to rest his body, it's been financially difficult and that causes a lot of stress. Unfortunately stress & Lyme do not go well together, so it's been interesting. Jon's boss called him this week and asked him to come back to work full time. Jon is still on a restricted max 8 hour day, but 8 hours is brutal on his body. We're going to give it a little time and see how things go. We've had many people ask us about going on  Disability and it is definitely on our heart, but it's not an easy process and having Lyme is going to make it 10x's harder. Nothing about this journey comes easily.

We meet with the doctor on April 4 and we will hopefully have a few more answers at that time. We've started to prepare our hearts into going to a specialist in New York. Jon's not 100% on board yet, but he's realizing that in order to get the right treatment it may be his only option. New York will open a whole new can of worms for us. It will not be covered by insurance and from what we've learned from some of our Lyme Friends is that it costs on average $4000-$5000. I'm trying not to stress about the $$ part of it, but it is wearing heavy on my heart these day. I know it will all work out, someway, somehow.

I know I'm rambling. I really should be updating the blog more often so I don't end up writing a novel each time I post, but lack of time and exhaustion from trying to keep everything together, leaves me with little time. Thanks for listening!!!

 Many of our friends and family have asked how they can help... until we meet with the doctor next week we just ask for prayers... 

Pray for...

     * Jon's physical health (head-to-toe pain, stomach issues from all the meds)

     * Jon's mental health  (depression, anxiety, obsessive compulsive, mood swings)

     * Sleep - Jon's been hit with insomnia and it's NOT fun!!!

     * Jon's doctor - to help lead us in the right direction

     * Our marriage 

     * The girls... they are SO loved and are our constant reminder that we need to push on and fight this disease. 

     * My mental health... being a caregiver is HARD and I'm tired.

     

We'd also like to Praise God for giving us answers. Yes, it sucks that Bartonella is now a part of Jon's life, but it's an answer. We would also like to Praise God for each and every one of you!!!! Without the help of our family and friends we would not be able to fight this journey. You all mean more to us than you will ever know!!! We are FOREVER touched by the kindness of others during this difficult time... THANK YOU, THANK YOU, THANK YOU!!!!

In closing I thought I would leave you with some information about Bartonella. I'm still learning new things daily, but this is what we do know...

The tick that bit Jon was also infected with Bartonella. We were so focused on the Lyme diagnosis that it wasn't until the antibiotics were no longer working that we realized there was something else going on. The blood work Jon had done a few weeks ago confirmed the Bartonella Infection. Below is a list of symptoms that go with Bartonella... the ones underlined are ones that are effecting Jon...

     
{Bartonella Symptoms}
Brain Fog
Fever
Foot/heel pain
Ice pick headaches
Photophobia
Tachycardia
Bowel problems IBS/IBD
Swollen Glands
OCD behavior
Anxiety
Endocarditis
Retinitis
Peripheral Neuropathy
Rapid relapse off antibiotics
Immediate illness following tick bite
Subcutaneous nodules
Swollen Joints
Swollen lymph nodes
Psychiatric problems
Shin pain
No response to previous antibiotics
Plantar and costal margin pain (plantar=soles of feet costal margin = The lower edge of the chest (thorax) formed by the bottom edge of the rib cage)
Rapid mood shifts
Development of these symptoms during Babesia (Lyme) Treatment
Insomnia
Sleep Disturbances
Rage
Panic Attacks
Seizures
Memory Loss
Fainting
Stretch mark rash

Sucks seeing so many things underlined, but it is what it is... time to fight on!!! I will update once I know more after Jon's appointment next week. Thanks again from the bottom of our hearts...

Much Love... the Van Dyke Crew and don't forget to MAKE EVERY MOMENT COUNT!!!!!

New Year... New Beginnings...

 

Wishing you and your families a blessed 2013!!!