It's been what seems like forever since I blogged, and I've been missing it. We are quickly coming up to the 2 year anniversary of Jon's official diagnosis. Hard to believe it's been over 2 years since that nasty tick changed our lives. While we were hopeful that he would go into remission, that unfortunately hasn't been the case. Jon's body continues to battle Lyme & Bartonella, but we are all learning to adjust.
As a family we've learned to accept the journey God has chosen for us. We've learned to communicate better, forgive more often and love unconditionally. Jon continues to "pulse" his antibiotics to help keep Lyme from taking over. With the hard use of antibiotics, comes not-so-fun side effects. Poor guy has lost quite a bit of weight. My once 36x32 hubby is now a 32x32, without trying to shed the pounds. He continues to battle memory issues, but has become a champ at taking notes. Jon is scheduled to have blood word done in the next couple weeks. I have to admit, it makes me nervous about the results. Being on antibiotics for such a long time is scary, but at the same time I am extremely grateful Jon's life has been saved because of them!
Jon is extremely fortunate to have some wonderful friends who help keep his spirits up. Whether it's watching their traditional "Michigan Out-of-doors" every Thursday night or heading out in the woods or on the ice for the latest outdoor activity, Jon's friends are the best! I have to be honest, I sometimes get jealous of the amount of time he gets to hang out with his friends, but I know it helps lift his spirits and am very fortunate his guy friends don't seem to mind me hanging out with them as well.
Not only does Jon have awesome friends, I too have the best friends. While I may not get to enjoy girl time as much as I would like due to my crazy, busy life. My friends are ALWAYS there for me whenever I need them! The last 6 months have been very difficult in regards to work, but the support I have received from those closest to me has been amazing.
Within the last 5 months, I have been laid off, rehired in a different role and then asked to go back to my old position. It was tough. Depression set in, and I was a very unhappy person. I am extremely grateful that I was able to go back to my old position. It felt really good to wear a genuine smile on my face this past week. The darkness in my heart is also starting to be filled with light, and I'm slowly seeing how I've grown because of the heartache.
The girls are doing great! Life with a 9, 6 & 4 year old can be challenging at times, but also AMAZING! They are constant reminders why we are blessed beyond words and why we fight so hard to push on during the dark days. We are excited to see what 2014 has in store for our family. As I sit here blogging, in my jammies, the girls have turned the living room into an American Girl adventure land. They have it covered, complete with a campground, restaurant, school and hospital. Their imagination is inspiring!!!
For those of you who have continued to uplift us in prayer... thank you!!! Please know that we are SO grateful for each and every one of you! We Praise God for you all daily!!!!
Please continue to pray...
Pray for Jon as he battles Lyme & Bartonella daily...
Pray for our family as we continue to adjust to our new life...
Pray for good results with Jon's blood work...
Pray for remission...
Pray for peace...
and as always...
Make EVERY Moment Count!!!!
Much love to you all & blessings for a fabulous 2014!!!
the Van Dyke's
Saturday, January 18, 2014
Sunday, June 9, 2013
{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)!!!
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| My friend Rachel, her darling daughter, my girls and I before the 5K. |
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| The girls and I with Grandma Van Dyke... I am SO proud of my Mother In-Law!!! |
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| After the 5K... |
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| WE DID IT!!! 1st 5K was a complete success!!! |
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}
Saturday, May 18, 2013
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.
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!!!
Please continue to pray for Jon and our family...
Pray for:
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
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.
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| 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!!!
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| 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
Friday, March 29, 2013
{Chronic Lyme with co-infection Bartonella} the "NEW" diagnosis
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...
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!!!!!
Tuesday, January 1, 2013
Saturday, December 22, 2012
Bridges to cross and a {Merry Christmas}...
Well... I'm officially on Christmas Break and it feels SO good to have a little time off work to really focus on family, especially after everything we've been through the past few weeks.
Jon and I met with his doctor this past Wednesday. The doctor started him on Doxycycline again and will start Metronidazole in 2 weeks. Jon will be on the Doxy all the time, and will do 2 weeks on, 2 weeks off of the Metro. His doc is hitting him hard, so unfortunately, Jon will more than likely get worse before he gets better. It's such a weird feeling hoping for an increase in pain, but if his body does start to Herx again, then we know it's working.
We also talked about the "next step" if things don't improve. If we are not seeing any improvement Jon will undergo more testing to see if there is a Co-Infection. Many times when someone is infected with Lyme, they will also have a Co-Infection such as Babesia or Bartonella along with the Lyme. We PRAY this is not the case, but we'll cross that bridge when we get there. If you are bored and want to research Lyme yourself, here are a couple websites that we visit often.
IGeneX, Inc. & ILADS
Please keep Jon in your prayers as we start up this treatment again. His doc reminded us that these are STRONG meds and can really mess up his gut. We are trying to be proactive, but some of the side effects are pretty darn scary.
Of course when it rains it pours and all of the girls have also been sick this past week. High fevers, fatigue, loss of appetite and aches & pains struck the girls... and poor grandma Van Dyke too :( The girls are slowly getting better. Claudia suffered for over a week. Constance was hit, but it was short lived and Chloe is still fighting it, but is doing better. The doc at Prime Care said it could take 2-3 weeks before they were back to themselves. I'm hoping sooner than later, especially with Christmas being 3 days away. Hopefully we are all on the mend and healthy soon. It hasn't hit me yet and that's a good thing, because I don't have time to be sick... there's too much to do around here.
In closing I want to wish you all a very Merry Christmas!!! Spend more time with those you love. Hug them all a little tighter and MAKE EVERY MOMENT COUNT!!!!
With love,
Jenn
Jon and I met with his doctor this past Wednesday. The doctor started him on Doxycycline again and will start Metronidazole in 2 weeks. Jon will be on the Doxy all the time, and will do 2 weeks on, 2 weeks off of the Metro. His doc is hitting him hard, so unfortunately, Jon will more than likely get worse before he gets better. It's such a weird feeling hoping for an increase in pain, but if his body does start to Herx again, then we know it's working.
We also talked about the "next step" if things don't improve. If we are not seeing any improvement Jon will undergo more testing to see if there is a Co-Infection. Many times when someone is infected with Lyme, they will also have a Co-Infection such as Babesia or Bartonella along with the Lyme. We PRAY this is not the case, but we'll cross that bridge when we get there. If you are bored and want to research Lyme yourself, here are a couple websites that we visit often.
IGeneX, Inc. & ILADS
Please keep Jon in your prayers as we start up this treatment again. His doc reminded us that these are STRONG meds and can really mess up his gut. We are trying to be proactive, but some of the side effects are pretty darn scary.
Of course when it rains it pours and all of the girls have also been sick this past week. High fevers, fatigue, loss of appetite and aches & pains struck the girls... and poor grandma Van Dyke too :( The girls are slowly getting better. Claudia suffered for over a week. Constance was hit, but it was short lived and Chloe is still fighting it, but is doing better. The doc at Prime Care said it could take 2-3 weeks before they were back to themselves. I'm hoping sooner than later, especially with Christmas being 3 days away. Hopefully we are all on the mend and healthy soon. It hasn't hit me yet and that's a good thing, because I don't have time to be sick... there's too much to do around here.
In closing I want to wish you all a very Merry Christmas!!! Spend more time with those you love. Hug them all a little tighter and MAKE EVERY MOMENT COUNT!!!!
With love,
Jenn
Tuesday, December 11, 2012
Holiday's... heartache or happiness
I'm not going to lie... I have a heavy heart this Holiday Season. This past year has been a year that I could easily forget. So much heartache, yet so much happiness...
Jon made it 4 weeks off his antibiotics. It's not been pretty. I know he really was hopeful that he would be doing a lot better, but he's not, and it's heartbreaking. It's so frustrating when you feel like crap on meds, and when you feel like crap off meds too. Lyme is just a vicious cycle. We hate it! Today we made the call for Jon to go back on meds. I know it took every ounce of his pride to tell me to make the call, but it is what it is and he can always try again later.
Jon was thankfully able to go to deer camp back in November and as many of you know, he was quite successful. It was just the boost he needed to lift his spirits, even if it was short lived.
In the midst of the pain and exhaustion, Jon is still able to work most of the time. I'm very grateful that we haven't had to cross the bridge of Jon not being able to work. We both know that the ability for him to work is a major blessing, and we don't want to take that for granted. However, work takes it all out of him and leaves him having zero to give. He needs a break, physically and mentally... and so do I!!!
My job is still going well. Most days I really enjoy it, but it's also taken my stress level to a whole new level. Getting everyone dressed and out the door by 6:45am every morning is insane!!! I hate weekday mornings with a passion. It doesn't matter how routine I am, or how well I have everything planned out and organized, I ALWAYS end up running around like a chicken with my head cut off..
I miss the girls terribly during the week. Many mornings I drive to work in tears, wishing that I could spend more time with them. Counting down the days for the next "weekend" or "break". However, I have been BLESSED BEYOND WORDS, with a wonderful Mother-in-law and Father-in-law. Without them, Jon and I would not be where we are today. We are very fortunate and blessed!!! I don't know what we would do without them, and I hope they know how much we love them!!! Knowing how well they are caring for the girls helps take a little bit of my mommy guilt away. However, it's not just my girls she is amazing with... she also "gets" me and is an amazing listener!!! I can't thank her enough.
In the midst of our crazy life we truly have so much to be thankful for... we have a roof over our heads, there's always food on the table, we have beds to sleep on, we have our Faith, Family & Friends... and we have each other.
While our life has been overwhelmed with heartache, it's been our family motto the last few months to Make EVERY Moment Count. As 2013 quickly approaches our family is determined to move forward with happiness. Yes, 2012 has sucked in many ways, but we've learned an amazing lesson along the way... we have each other... Jon, Jenn, Claudia, Constance & Chloe... we're a team and no one can take that away from us!!!
Thank you ALL for your support and love this past year... you will probably never know just how much you've touched our lives. Christmas Blessings to you all... and don't forget to Make EVERY Moment Count!!!
Jon made it 4 weeks off his antibiotics. It's not been pretty. I know he really was hopeful that he would be doing a lot better, but he's not, and it's heartbreaking. It's so frustrating when you feel like crap on meds, and when you feel like crap off meds too. Lyme is just a vicious cycle. We hate it! Today we made the call for Jon to go back on meds. I know it took every ounce of his pride to tell me to make the call, but it is what it is and he can always try again later.
Jon was thankfully able to go to deer camp back in November and as many of you know, he was quite successful. It was just the boost he needed to lift his spirits, even if it was short lived.
In the midst of the pain and exhaustion, Jon is still able to work most of the time. I'm very grateful that we haven't had to cross the bridge of Jon not being able to work. We both know that the ability for him to work is a major blessing, and we don't want to take that for granted. However, work takes it all out of him and leaves him having zero to give. He needs a break, physically and mentally... and so do I!!!My job is still going well. Most days I really enjoy it, but it's also taken my stress level to a whole new level. Getting everyone dressed and out the door by 6:45am every morning is insane!!! I hate weekday mornings with a passion. It doesn't matter how routine I am, or how well I have everything planned out and organized, I ALWAYS end up running around like a chicken with my head cut off..
I miss the girls terribly during the week. Many mornings I drive to work in tears, wishing that I could spend more time with them. Counting down the days for the next "weekend" or "break". However, I have been BLESSED BEYOND WORDS, with a wonderful Mother-in-law and Father-in-law. Without them, Jon and I would not be where we are today. We are very fortunate and blessed!!! I don't know what we would do without them, and I hope they know how much we love them!!! Knowing how well they are caring for the girls helps take a little bit of my mommy guilt away. However, it's not just my girls she is amazing with... she also "gets" me and is an amazing listener!!! I can't thank her enough.
In the midst of our crazy life we truly have so much to be thankful for... we have a roof over our heads, there's always food on the table, we have beds to sleep on, we have our Faith, Family & Friends... and we have each other.
While our life has been overwhelmed with heartache, it's been our family motto the last few months to Make EVERY Moment Count. As 2013 quickly approaches our family is determined to move forward with happiness. Yes, 2012 has sucked in many ways, but we've learned an amazing lesson along the way... we have each other... Jon, Jenn, Claudia, Constance & Chloe... we're a team and no one can take that away from us!!!
Thank you ALL for your support and love this past year... you will probably never know just how much you've touched our lives. Christmas Blessings to you all... and don't forget to Make EVERY Moment Count!!!
Saturday, October 13, 2012
a year after the attack...
Jon has been feeling "ok". He has good days and bad, probably more bad than good, but he is quick to hide the pain. The one thing he can't hide though is the exhaustion. I've never seen someone who can fall asleep so quick. He'll be out cold in the midst of a conversation, sometimes it bothers me, but most of the time I just giggle and move on.
At Jon's last doctors appointment he made the decision to stop the antibiotics to see how his body reacts. We'll see how it goes, he's just finishing up his last round of antibiotics, so the next few weeks will be the real test. Jon is still working which is great, as most Lyme patients are not able to work. Things will be slowing down at work, so there's a good chance Jon will have some time off work, and he's quite happy about that. A break would be very welcomed.
Many of you are aware of my new job with Holland Public Schools. I had been searching for new jobs for a few months. I needed to know that the girls would have insurance if Jon would become to sick to work. One day during summer vacation I came across the posting for a secretarial position in the same building I'd been working at for the last 11 years. After some serious anxiety and lot's of prayers, I ended my summer vacation early and began a new "working" adventure. I really enjoy the job, but wow, what a change for all of us. I went from working 26 hours a week to 40+ hours a week. It's been very bittersweet, while I LOVE the job, I miss the girls and Jon terribly.
With the increase in working hours, I made the heartbreaking decision to take a break from photography. I still have a few sessions on my calendar, and A LOT of sessions waiting to be edited, so I'm not done yet. If you're one of those families that are waiting for your pictures, I promise they are coming... it's just taking extra time. When my day starts at 4:30am, and I don't sit down until 7:30pm, by 8:00 I'm ready for bed so that I can rest up to start all over again, that doesn't leave much time to edit... I'm sorry to those of you who are waiting, but I greatly appreciate how patient everyone has been, so thank you!!!
The girls are doing great. Their days are crazy too, but they don't seem to mind. They have been a constant reminder to Jon and I that we are blessed, even in the midst of sheer craziness. They've seen us at our worst, and always know just what to say to bring a smile right back to our face.
We recently had to say good-bye to our 1st baby... Mattie Sue. She blessed our life for almost 11 years. The last year was really hard on her. Mattie suffered from Pug Dog Encephalitis. It was our prayer for the last few months that she would just go peacefully on her own. The thought of us having to put her down made Jon and I both ill. On September 7 our prayers were answered and we woke to find her at peace, she even had a little smile on her face. While it's what we had prayed for, there was no way to prepare our hearts for her passing. Jon and I still get choked up when talking and thinking about her. She will be greatly missed by many... but it's all part of life, and yet again another reason why it's so important to Make Every Moment Count!!!
As I end this entry (that's taken me 4 days to finish because of time restraints, so I apologize for typo's), I ask that you continue to send us good thoughts and prayers. Please keep Jon in your prayers as he stops treatment and we see exactly how Lyme is affecting his body. Continue to pray for our entire family as our lives have been forever changed because of Lyme. Your support and prayers mean the world to us. You never know what life is going to throw at you, but when you're stuck in the middle of sheer craziness, you have 2 choices. #1... Run far, far away from everything or #2... Make Every Moment Count. While choice #1 runs thru my mind A LOT... it's not the path we have decided to take. Instead we look at all the blessings that have come into our lives and we choose to Make Every Moment Count!!!
With all our love and gratitude... ((((((HUGS))))))
Friday, August 3, 2012
still here
We're still around... I just don't have as much time as I would like to get on here to journal my thoughts and feelings on what is going on in our life. Between being a mom, wife, compensating for a sick hubby, caring for our home and photography I've been swamped. I've pulled many all-nighters trying to finish laundry, pick up toys, do dishes, organize meds & editing pictures. While it's exhausting, this is my life. I tell myself that someday I will miss all of my late nights on the couch and caring for a busy household. Yes, there are some big speed bumps ahead of us, but we are sincerely trying to make the best of journey. Some day Jon and I will be {Sitting in our rockers, eating Betty Crocker, watching the clock go tick-tock} and we'll realize that these difficult times in our lives were really "the good ole' days".
Things take a whole new meaning when you really stop to think about things. Priorities change. Marriages are strengthened. Children blossom and memories are made. Unfortunately for every positive change that occurs, we are hit smack in the face with struggles and heartache. It's not all rainbows and sunshine. Sometimes you're hit with thunder and lightning.
The past few weeks have not been easy. Jon doesn't have "sick time" at work. He can use his vacation time, but that is quickly dwindling away. Between Jon's monthly doctor's visits and our monthly meds, our medical bills are piling up fast. Let me tell you, I am VERY grateful for understanding medical practices. We may be paying these bills off for years, but they are at least being paid. We've also quickly learned that Jon's immunity is low and getting a simple cold can through EVERYTHING off kilter.
We have also been blessed with AMAZING family and friends who have significantly helped us in our most desperate times of need. THANK YOU, THANK YOU, THANK YOU!!!
In the midst of old dreams being crushed, new dreams are being made and even some really old dreams are starting to become a reality, we ask that you continue to send us good thoughts and prayers. Some really awesome things are starting to take shape for our family, but we know that there could possibly be more speed bumps in our way, but we're going to continue to strive forward, and Make EVERY Moment Count!!!
Jon's parents took us to the Ottawa County Fair this year... when I look at those 3 big smiles, on those 3 beautiful faces, I can't help but smile too. It's those same 3 smiles that get me through the really bad days, and the same 3 smiles that I see every morning and every night at bedtime. I know things have changed for our family. Our daily life has changed, the way I think has changed, the way I work has changed... many changes for us. But one thing never changes is the way those 3 smiles melt my heart... over and over again.
Make EVERY Moment Count.... seriously... do it... you won't regret a minute of it!!!
(((((((HUGS)))))))
Things take a whole new meaning when you really stop to think about things. Priorities change. Marriages are strengthened. Children blossom and memories are made. Unfortunately for every positive change that occurs, we are hit smack in the face with struggles and heartache. It's not all rainbows and sunshine. Sometimes you're hit with thunder and lightning.
The past few weeks have not been easy. Jon doesn't have "sick time" at work. He can use his vacation time, but that is quickly dwindling away. Between Jon's monthly doctor's visits and our monthly meds, our medical bills are piling up fast. Let me tell you, I am VERY grateful for understanding medical practices. We may be paying these bills off for years, but they are at least being paid. We've also quickly learned that Jon's immunity is low and getting a simple cold can through EVERYTHING off kilter.
We have also been blessed with AMAZING family and friends who have significantly helped us in our most desperate times of need. THANK YOU, THANK YOU, THANK YOU!!!
In the midst of old dreams being crushed, new dreams are being made and even some really old dreams are starting to become a reality, we ask that you continue to send us good thoughts and prayers. Some really awesome things are starting to take shape for our family, but we know that there could possibly be more speed bumps in our way, but we're going to continue to strive forward, and Make EVERY Moment Count!!!
Jon's parents took us to the Ottawa County Fair this year... when I look at those 3 big smiles, on those 3 beautiful faces, I can't help but smile too. It's those same 3 smiles that get me through the really bad days, and the same 3 smiles that I see every morning and every night at bedtime. I know things have changed for our family. Our daily life has changed, the way I think has changed, the way I work has changed... many changes for us. But one thing never changes is the way those 3 smiles melt my heart... over and over again.Make EVERY Moment Count.... seriously... do it... you won't regret a minute of it!!!
(((((((HUGS)))))))
Monday, July 16, 2012
Another check up...
First of all I want to thank everyone who expressed their love and concern to us, especially the last week. Jon and I are both overwhelmed with the outpouring of love and compassion that so many of you have shown to us... THANK YOU!!! We continue to struggle with so many unanswered questions, but we can't change things and today we are accepting the unknown better, so that's a blessing. Who knows how we'll feel about things tomorrow, but at least today is a better and brighter day.
Jon goes in for his 4 week check up again... these appointments are becoming all too routine for us. It's all part of our new life. Jon has been experiencing a lot more neck pain, and that is definitely going to be a topic of conversation today. He's been on vicodin for the last 4 weeks to help ease the pain, and some days it helps and others not so much. I'll be honest, I HATE that he is taking it (I don't tell him that), but I also completely understand that he needs relief and if that's how he can get some relief then I need to get over that hatred. I truly understand that they are needed in this situation, it's just hard for me to stomach, because honestly I've seen too many people get messed up because of pain meds, not to mention lives ruined, and I just don't want our journey to take that route.
Ugh, I just worry too much... I know I need to let things go, easier said than done, but I have to try!!! I came across this saying this morning on Pinterest... it hit me hard... hard enough to make me cry, but sometimes you just need that...
I think I may need to frame it and put it where I can see it as a constant reminder, that no matter how bad it gets or how low I feel that God has a perfect plan for Jon and I, and this journey with {Lyme}... we will survive, tears will be shed, nights may be sleepless, questions unanswered, but it's our journey and we'll fight it together and we're going to be stronger because of it all.
Make EVERY Moment Count!!!!
Jon goes in for his 4 week check up again... these appointments are becoming all too routine for us. It's all part of our new life. Jon has been experiencing a lot more neck pain, and that is definitely going to be a topic of conversation today. He's been on vicodin for the last 4 weeks to help ease the pain, and some days it helps and others not so much. I'll be honest, I HATE that he is taking it (I don't tell him that), but I also completely understand that he needs relief and if that's how he can get some relief then I need to get over that hatred. I truly understand that they are needed in this situation, it's just hard for me to stomach, because honestly I've seen too many people get messed up because of pain meds, not to mention lives ruined, and I just don't want our journey to take that route.
Ugh, I just worry too much... I know I need to let things go, easier said than done, but I have to try!!! I came across this saying this morning on Pinterest... it hit me hard... hard enough to make me cry, but sometimes you just need that...
Make EVERY Moment Count!!!!
Friday, July 13, 2012
Today I want to...
GIVE UP!!!!
Today just plain sucks!!!
I'm feeling very consumed by {Lyme} and {Life} right now.
To add to our long list of stress, our beloved Pug, Mattie Sue has been rapidly going down hill. She's almost 11 and honestly has lived a great life, but the last year she has really slowed down. Last night she was up all night... poor thing couldn't breath... broke my heart. We've had the conversation about what's going to happen, and honestly last night I thought we were at the end. She's a little fighter though, and today is resting comfortably, so while my "good-bye's" that were said in the middle of the night, I'm extremely grateful that my little pug is still holding on. I'm really not ready to make the final decision to say good-bye.
As for Lyme... well, it's catching up to us in many ways. Jon's been dealing with a lot of neck pain the last few days, and hasn't been working full days near as much. Sometimes work is just slow, but mostly because he just can't do it. Well, when you don't work, you don't get paid... and it sucks. So today I find myself stressing over $, and which bill to pay and which bill is just going to have to wait... I hate this feeling!!! It's not Jon's fault. He can't help that he's sick. I know I sometimes take it out on him and that alone makes me feel terrible, but I'm only human right?!?! Today I feel like it's me though... maybe I'm not doing my part... I know I selfishly want to be home with the girls and have also been blessed to do so in the summer, but maybe that's just not an option anymore. I'm devastated about it... I feel bad that I'm not providing more... We've never wanted to put $ over our family, and family will ALWAYS be more important, but today, well... it just sucks. I'm not asking for pity or handouts, that's just not how we work, but I just need to write things out... I'm depressed, holding way too much inside and I'm not sure how much longer mentally I can do it without breaking down. As I sit here and type through the tears, I in some weird way feel better. I know many of you know of my passion for photography, and how much heart and soul I've put into Captured Memories. I have always wanted to keep it a love in my life and to be able to offer my talent to others so they can always cherish those memories at a reasonable price, but maybe that needs to change... maybe I need to up my prices... maybe I need to quit working for the school and photography all together and find something full time and become the source of income for our family... I don't know... these are all just rambling thoughts, nothing set in stone... today is just not the day to make any harsh decisions... but believe me, they are on my mind more often than just today.
I guess I've been holding a lot in lately... I wish I was better about letting things go, before I break down and feel like I'm drowning... but this is me... this is my life today and a BIG part of it is because of a damn little bug... that was not welcome here, but invaded our lives anyways... WHY!?!?!?
Please pray for Jon... he goes back to the doctor on Monday... not sure what will happen at the appointment, but we'll just have to wait... something that is definitely hard to stomach some days. Pray for the girls as they too have to adjust to this life. I try to be brave, but today has not been one of those days. I'm grateful mom Van Dyke could come to sit with the girls at the pool today so I could just breakdown. Yeah, I'm supposed to be going through all my client pics, so I'm ready to edit when my new computer screen comes in, but instead I sit here crying my eyes out... listening to their giggles in the pool, the snoring of Jon on the couch, and "somewhere over the rainbow" on Pandora... it's really overwhelming today... tomorrow is a new day, right?!?!
If you made it this far, congrats to you... sometimes life just sucks, and you just want to give up... we're all only human... most people hide behind their crappy days... today, I just can't... and I'm okay with that... it feels good to be honest, this is my life... our life... our life in the {lyme} light... while I really want to throw my hands up and quit, I can't... I must push on... through the tears... I must find that reason to "Make EVERY Moment Count!!!"
Today just plain sucks!!!
I'm feeling very consumed by {Lyme} and {Life} right now.
To add to our long list of stress, our beloved Pug, Mattie Sue has been rapidly going down hill. She's almost 11 and honestly has lived a great life, but the last year she has really slowed down. Last night she was up all night... poor thing couldn't breath... broke my heart. We've had the conversation about what's going to happen, and honestly last night I thought we were at the end. She's a little fighter though, and today is resting comfortably, so while my "good-bye's" that were said in the middle of the night, I'm extremely grateful that my little pug is still holding on. I'm really not ready to make the final decision to say good-bye.
As for Lyme... well, it's catching up to us in many ways. Jon's been dealing with a lot of neck pain the last few days, and hasn't been working full days near as much. Sometimes work is just slow, but mostly because he just can't do it. Well, when you don't work, you don't get paid... and it sucks. So today I find myself stressing over $, and which bill to pay and which bill is just going to have to wait... I hate this feeling!!! It's not Jon's fault. He can't help that he's sick. I know I sometimes take it out on him and that alone makes me feel terrible, but I'm only human right?!?! Today I feel like it's me though... maybe I'm not doing my part... I know I selfishly want to be home with the girls and have also been blessed to do so in the summer, but maybe that's just not an option anymore. I'm devastated about it... I feel bad that I'm not providing more... We've never wanted to put $ over our family, and family will ALWAYS be more important, but today, well... it just sucks. I'm not asking for pity or handouts, that's just not how we work, but I just need to write things out... I'm depressed, holding way too much inside and I'm not sure how much longer mentally I can do it without breaking down. As I sit here and type through the tears, I in some weird way feel better. I know many of you know of my passion for photography, and how much heart and soul I've put into Captured Memories. I have always wanted to keep it a love in my life and to be able to offer my talent to others so they can always cherish those memories at a reasonable price, but maybe that needs to change... maybe I need to up my prices... maybe I need to quit working for the school and photography all together and find something full time and become the source of income for our family... I don't know... these are all just rambling thoughts, nothing set in stone... today is just not the day to make any harsh decisions... but believe me, they are on my mind more often than just today.
I guess I've been holding a lot in lately... I wish I was better about letting things go, before I break down and feel like I'm drowning... but this is me... this is my life today and a BIG part of it is because of a damn little bug... that was not welcome here, but invaded our lives anyways... WHY!?!?!?
Please pray for Jon... he goes back to the doctor on Monday... not sure what will happen at the appointment, but we'll just have to wait... something that is definitely hard to stomach some days. Pray for the girls as they too have to adjust to this life. I try to be brave, but today has not been one of those days. I'm grateful mom Van Dyke could come to sit with the girls at the pool today so I could just breakdown. Yeah, I'm supposed to be going through all my client pics, so I'm ready to edit when my new computer screen comes in, but instead I sit here crying my eyes out... listening to their giggles in the pool, the snoring of Jon on the couch, and "somewhere over the rainbow" on Pandora... it's really overwhelming today... tomorrow is a new day, right?!?!
If you made it this far, congrats to you... sometimes life just sucks, and you just want to give up... we're all only human... most people hide behind their crappy days... today, I just can't... and I'm okay with that... it feels good to be honest, this is my life... our life... our life in the {lyme} light... while I really want to throw my hands up and quit, I can't... I must push on... through the tears... I must find that reason to "Make EVERY Moment Count!!!"
Tuesday, July 10, 2012
the view from my viewfinder...
Here are a few pictures from our "Making EVERY moment count" vacation. Sorry there are so many, it was hard to pick favorites...
Sunday, July 8, 2012
Home Sweet Home!!!
We had an AMAZING time up north. It was great for us to go away, and to make memories with each other. It was HOT, HOT, HOT, but well worth it :) Vacationing is different when Lyme tags along, but Jon was a trooper and enjoyed the time away too. His body required more stops along the way, as well as more naps. We really wanted this to be a relaxing vacation, and it was for the most part, but anytime you go away you always come home exhausted, and that is how we are all feeling today. We took the scenic route to the bridge and it was worth it. We enjoyed lunch at Don's Drive Inn... yum, yum, yum. It was fun taking the girls to places we went to on our honeymoon 10+ years ago. The girls enjoyed the pools and indoor water parks. They certainly are little fish :) On Friday we crossed the Mighty Mac and headed to the Mystery Spot and Deer Ranch. It was a lot of fun watching Claudia at the Mystery Spot... you could see the wheels spinning in her little head. I personally LOVED watching Jon with the girls at Deer Ranch, they fed & touched a lot of deer, and I could tell he was loving every minute of his girls being interested in the deer. However, the fun there was quickly overcome with panic as Chloe had an allergic reaction to something. Poor thing was dealing with some allergy issues, but in a matter of less than 2 minutes her entire face swelled. She couldn't see out of her eyes, and was covered with hives and lot's of swelling. We think one of the deer up there had fly spray on them and that set off a major reaction for her. Luckily I had allergy meds with me, so I gave her the max dose and we quickly made our way to McD's so we could get her out of the heat and I could give her a bath. It was definitely scary, but after about an hour she was starting to act more like herself and she was able to see out of her eyes again. Later that night we did some walking downtown Mackinaw City and that was really nice. The heat had finally let up a little and we were enjoying the nice breeze. It was greatly appreciate, because it was HOT, and having no air in the van made it even hotter, but we all sweated it out together :) When we got back to our hotel, Jon's mom and I put the little & big kids to bed and then made our way over the Mighty Mac again to try our luck at the casino. We tried our best to come home with more $$ in our pockets, unfortunately that didn't happen, but we did have a great time. Our ride home was nice too. We stopped by the farm that the boys hunt at, and we visited with dad's cousin Dave for a bit and Jon showed the girls where he deer hunts... they even got to use the bathroom in daddy's trailer. It was GREAT to get away, but it was really nice to come home too.
I have a bazillion pictures from the trip, surprise surprise, but my computer screen is all messed up so looking at pictures isn't an option right now, but I will definitely post pics, once I'm back up and running again.
Please continue to think of Jon and to pray for him as he tries to "recover" from vacation. He's been having A LOT of neck pain lately and the exhaustion is getting the best of him. He's supposed to go back to work tomorrow and I know he's not looking forward to it for many reasons. Today is also Jon's last day for his nasty meds... he'll have a week off and then back at it for 2 weeks. They definitely didn't hit him as hard this time as they did the last time (and we are thankful for that), but it's still been a rough few weeks.
We have SO much to be thankful for right now though. We hope you all had a wonderful 4th of July "week" and that you were all able to Make EVERY moment count!!!
I have a bazillion pictures from the trip, surprise surprise, but my computer screen is all messed up so looking at pictures isn't an option right now, but I will definitely post pics, once I'm back up and running again.
Please continue to think of Jon and to pray for him as he tries to "recover" from vacation. He's been having A LOT of neck pain lately and the exhaustion is getting the best of him. He's supposed to go back to work tomorrow and I know he's not looking forward to it for many reasons. Today is also Jon's last day for his nasty meds... he'll have a week off and then back at it for 2 weeks. They definitely didn't hit him as hard this time as they did the last time (and we are thankful for that), but it's still been a rough few weeks.
We have SO much to be thankful for right now though. We hope you all had a wonderful 4th of July "week" and that you were all able to Make EVERY moment count!!!
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!!!
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.
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.
 |
| Photo courtesy of CDC website |
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.
We hope everyone "Made EVERY moment count" this weekend!!!
- 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.
- 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.
- 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.
- 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.
- The Lyme spirochete bacteria is hard to detect and hard to kill. Lyme disease is growing at epidemic proportions in the United States.
- It is called the great imitator; looking like many other health problems (Fibromyalgia, Arthritis, Chronic Fatigue Syndrome, Bells Palsy, ADD, MS and Lupus).
- The medical community is divided over the diagnosis and treatment guidelines. Health insurance often doesn’t cover the treatment for Chronic Lyme disease.
- 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
- 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,
- A recommended book to read: Cure Unknown by Pamela Weintraub and a recommended DVD is Under Our Skin.
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!!!
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