Well, I thought it was time for an update for anyone who was wondering what has been going on with Mike and his MS. I didn't realize I hadn't posted anything on here for 6 months, I guess I'm not very good at this blogging stuff!
About 6 weeks ago Mike had another round of IV steroids at the hospital for a flare-up. This time the flare-up was mostly in his arms and hands. After the week of steroids at the hospital, he continued to have the same symptoms. I decided it was time for Mike to head back to his neurologist, Dr. Landon. We haven't seen him since Mike was first diagnosed, and we both thought he was having too many symptoms and we wanted more answers about all this. We are learning just how frustrating and confusing MS really is. The number one thing is don't ever think people with MS that 'look well' are feeling well. Mike has constant fatigue that he fights through every day of his life. It takes him 3 days to fully mow our lawn, because he needs to take many breaks. He feels weak in all his extremities. His right leg has not gone back to the same since the first major 'attack' last July. Dr. Landon decided to get a repeat MRI of Mike's brain, neck, and back. A few weeks later Mike had an appointment. The news was actually AWESOME!!! The brain lesions had stayed the same, 4 lesions on his cervical (neck area) spine had almost disappeared! None of the lesions were 'enhanced' which is good. I feel like I want to go back to college to just take neurology courses! We are constantly looking up things online and in our books from Dr. Landon, and are still confused. But either way, Dr. Landon said it looks like Mike's daily injections of Copaxone are working! So.....this is why MS is so frustrating....Mike asked why he was feeling so many symptoms. "Because you have MS Mike!" said Dr. Landon. So Mike was then started on 2 new medications. He has started one, for burning/electrical feelings in his legs, feet, arms, hands. He was prescribed a muscle relaxer for leg spasms at night, which he has not tried. Dr. Landon also wants him to try a new medication, which is only for MS patients, and it is supposed to make his legs feel stronger. At first we were nervous to try this, because we thought it was new. But come to find out, it has been used for 15 years now through compound pharmacies (called 4AP). Dr. Landon has over 100 people on this. So if our insurance doesn't cover the new med, Amypra, then we will most likely get the 4AP made at Watkins. Mike has also been off work due to all his symptoms. This has been a rough transition, but trust in God to lead us.
Am I confusing you yet?? Trust me, this has consumed our lives since August. Not ONE day goes by that we don't talk about MS. Many tears have been shed. But many jokes have also been made about it! You have to laugh, or else...we will go crazy. We would like to thank everyone for continued prayers and calls and emails. It means alot to us.
Please pray for:
~new medication to work! Mike is going to try it for a few weeks and see if he feels up to trying to go back to work. Dr. Landon says it either works, or it doesn't.
~the kids to understand that Dad gets easily tired and can't do everything is one day!
~Mike's mood is sooooo up and down. He gets easily frustrated and sad over all this. Sometimes he keeps things in too long, and then has 'breakdowns'
~medications to not be expensive, and for Mike to be able to tolerate them. He has gone from never being on a prescription to now having 4 total. That doesn't sit well with him.
~for Dr. Landon
~MS research
Walk for MS - September 11, 2010
We are planning on doing a Walk for MS Saturday, September 11 in Grand Haven. If anyone is interesting in walking it with us in honor of Mike, or donate to the cause (it's run through the National MS Society) let us know! The summer always goes by fast, Sept. 11 will be here soon!
Friday, June 11, 2010
Wednesday, December 9, 2009
Depression.....
Depression
~ I used to think people just needed to pray more instead of being sad
~ didn't always understand why people needed medication, they just need faith
~ how seasons can really affect moods
~ you don't feel like yourself at all
~ you can't just 'snap' out of it
~ all the commercials are right about having to 'wind' yourself up just to get out of bed
Depression
~a word I never thought would pertain to me....or my husband
I am a firm believer that everything in this life happens for a reason. I think Mike's diagnosis is truly starting to sink in. At first for a while it was still the shock factor. But now watching him slip into this depression is so hard to watch, it's just not my Mike. And don't get me wrong, we both have really great days, but neither of us feel 'normal.' I keep telling myself, things could be SO much worse, so many others are battling cancer. I keep telling myself, Mike's body is changing, not mine. This has got to be so hard for him. But I just can't get rid of this depression/anxiety. Every pain in my body, I think something horrible is wrong with me. Every time the kids don't feel good, I obsess about it and wonder if something might happen to them. I've never had this before.
So this must be one of the reasons Mike has MS. This will be just one of the GOOD things to come out of this. I will and DO have a better understanding for people who struggle with depression and anxiety. I will be able to help my patients, or family, or friends with their struggles. I will admit, even after working with patients for 5 years, I never truly understood depression/anxiety, until now. And I hope and pray as time goes on, I will become stronger and will be able to overcome this.
I'm writing such personal things now because I feel so helpless. I want to have my old self back, and my husband back. I've been trying so hard to plan fun things, watch funny movies, I've been avoiding talking to Mike about how he physically feels. He is so frustrated, so worn out, feels like no one understands what he's going through. Even though the last round of steroids worked well, we constantly wonder when will he flare-up again. And even though the numbness is better, he feels drained, weak. So I'm writing all these personal things tonight, because we need prayer. No funny movie, or trip to the mall, will help us through this like prayer will.
Thank you for taking the time to read this, and for prayers! We really appreciate everyone in our lives. And I pray for anyone out there who struggles with depression/anxiety...we are not alone! :)
Kim
~ I used to think people just needed to pray more instead of being sad
~ didn't always understand why people needed medication, they just need faith
~ how seasons can really affect moods
~ you don't feel like yourself at all
~ you can't just 'snap' out of it
~ all the commercials are right about having to 'wind' yourself up just to get out of bed
Depression
~a word I never thought would pertain to me....or my husband
I am a firm believer that everything in this life happens for a reason. I think Mike's diagnosis is truly starting to sink in. At first for a while it was still the shock factor. But now watching him slip into this depression is so hard to watch, it's just not my Mike. And don't get me wrong, we both have really great days, but neither of us feel 'normal.' I keep telling myself, things could be SO much worse, so many others are battling cancer. I keep telling myself, Mike's body is changing, not mine. This has got to be so hard for him. But I just can't get rid of this depression/anxiety. Every pain in my body, I think something horrible is wrong with me. Every time the kids don't feel good, I obsess about it and wonder if something might happen to them. I've never had this before.
So this must be one of the reasons Mike has MS. This will be just one of the GOOD things to come out of this. I will and DO have a better understanding for people who struggle with depression and anxiety. I will be able to help my patients, or family, or friends with their struggles. I will admit, even after working with patients for 5 years, I never truly understood depression/anxiety, until now. And I hope and pray as time goes on, I will become stronger and will be able to overcome this.
I'm writing such personal things now because I feel so helpless. I want to have my old self back, and my husband back. I've been trying so hard to plan fun things, watch funny movies, I've been avoiding talking to Mike about how he physically feels. He is so frustrated, so worn out, feels like no one understands what he's going through. Even though the last round of steroids worked well, we constantly wonder when will he flare-up again. And even though the numbness is better, he feels drained, weak. So I'm writing all these personal things tonight, because we need prayer. No funny movie, or trip to the mall, will help us through this like prayer will.
Thank you for taking the time to read this, and for prayers! We really appreciate everyone in our lives. And I pray for anyone out there who struggles with depression/anxiety...we are not alone! :)
Kim
Sunday, November 22, 2009
Here we go again....
So last Friday Mike started having symptoms again of a flare up. It started with one foot numb and then turned into both feet and then both legs. To have my fun-spirited, energy-filled, crazy husband start walking w/a great limp and be slowed down is devastating to watch. And then his frustration kicks in...So we called Dr. Landon who order lab work to make sure it wasn't some kind of random infection/virus. The labs came back fine, so Dr. Landon ordered 4 days again of IV steroid treatments at the hospital. So here we go again...the steroids cause great side effects for Mike, shakiness, insomnia, moodiness. These symptoms last for close to 2 weeks. BUT, the great news is that as of today, Mike had one treatment on Friday and can already feel some mild relief in his legs. He is such a trooper....working so hard through all this. Tiara is already offering overtime, which is great around this time of year, but obviously takes a toll on Mike. He did miss many days of his 2nd job this past week, but thankfully they are understanding. We both can't wait to get things back on track so that we don't need the extra job!
Please pray for:
Mike's frustration
Steroids to get rid of all of the symptoms
Tiara Yachts to continue to get many boat orders! (and all the employees to get their 15% pay back!)
Mike's copaxone injections to kick in....it does take 3 months for them to start working, which will hopefully make less flare-ups and the flareups lighter
Me ~ to help support Mike by being able to discuss his condition, I will be honest and am still having a hard time even looking up/reading about MS...
Thank you again for continued prayers. We continue to take one day at a time. We continue to be so blessed with a great family and friends, and couldn't do this all without them! The kids are doing great, and this time of year is our favorite. I pray that Mike has a LONG time until his next flare-up, it breaks my heart to see him like this. Through this all, he is the strong one, he is what holds our family together. I've never met someone like him!
Also, a few friends of ours are suffering from losses and huge battles...please pray for them too!
Kim
Please pray for:
Mike's frustration
Steroids to get rid of all of the symptoms
Tiara Yachts to continue to get many boat orders! (and all the employees to get their 15% pay back!)
Mike's copaxone injections to kick in....it does take 3 months for them to start working, which will hopefully make less flare-ups and the flareups lighter
Me ~ to help support Mike by being able to discuss his condition, I will be honest and am still having a hard time even looking up/reading about MS...
Thank you again for continued prayers. We continue to take one day at a time. We continue to be so blessed with a great family and friends, and couldn't do this all without them! The kids are doing great, and this time of year is our favorite. I pray that Mike has a LONG time until his next flare-up, it breaks my heart to see him like this. Through this all, he is the strong one, he is what holds our family together. I've never met someone like him!
Also, a few friends of ours are suffering from losses and huge battles...please pray for them too!
Kim
Wednesday, October 28, 2009
The medication is here....
Yesterday Mike's new medication arrived. It's called 'copaxone' and he will have one injection everyday. There are 6 sites on his body he have to rotate the injections. The medication cost $2,300/month!!! Good thing we have great insurance, only $20.00/month! What a blessing! Some time within the next few days we will have a nurse come to our home to help get us started. We are already trying to find areas in the house to keep all the supplies in an orgazined area and really out of reach for the kids! This medication should cause little to no side effects. The only side effect it should cause is some pain in the injection sites. Some of the other MS drugs cause flu-like symptoms daily, so we feel good about this medication choice. It also helps that I've given injections everyday for the past 5 years at work, so I kinda know what we're doing here.
Mike is back to working crazy hours. I am so proud to be his wife. This week he is working 67 hours! Which is WAY too much. After next week he requested his hours be cut back at Walmart, and they totally understood. The plan is to keep the 2nd job until after the holidays and to pay a few more things off, and then only ONE job for Mike! He's also been painting on the side.....He could choose to take the easy way out, he could even file for disability if he really wanted, but he is such a hard worker, and always puts his family first! I don't know many people like him!
Please pray for:
We had a talk with the kids about Mike starting the injections. They did great, didn't really have many questions, and wanted to carve pumpkins right away. I think they handled it very well. But, the we haven't started yet, and the nurse will be here, I just really don't want them to worry at all!
Continued energy for Mike.
Two main symptoms still persist: fatigue and hand pain/numbness. This continues to be very frustrating for Mike, and it's hard for me to see him struggle.
With great support from my family and friends, I quickly overcame what most people call my first really 'panic attack' episode, that even landed me in ER. I feel fine now, but I think everything just caught up to me...
And lastly, we have had to rely on our family for daycare everyday over the past few weeks, and the next few weeks. They have been so wonderful! Hopefully in the near future, we will have our awesome Laury back, but until then, we thank my parents, sisters, Mike's parents, and Aunt Mary for always being there to help!
Many songs have helped throughout this journey, my favorite is Mercy Me, bring the rain....
"I can count a million times, people asking me how I, can praise You after all that I've been through...... I draw closer through these times......Bring me anything that brings You glory.....I know they'll be days when this life brings me pain, but if that's what if take to praise You, Jesus bring the rain..."
Yesterday Mike's new medication arrived. It's called 'copaxone' and he will have one injection everyday. There are 6 sites on his body he have to rotate the injections. The medication cost $2,300/month!!! Good thing we have great insurance, only $20.00/month! What a blessing! Some time within the next few days we will have a nurse come to our home to help get us started. We are already trying to find areas in the house to keep all the supplies in an orgazined area and really out of reach for the kids! This medication should cause little to no side effects. The only side effect it should cause is some pain in the injection sites. Some of the other MS drugs cause flu-like symptoms daily, so we feel good about this medication choice. It also helps that I've given injections everyday for the past 5 years at work, so I kinda know what we're doing here.
Mike is back to working crazy hours. I am so proud to be his wife. This week he is working 67 hours! Which is WAY too much. After next week he requested his hours be cut back at Walmart, and they totally understood. The plan is to keep the 2nd job until after the holidays and to pay a few more things off, and then only ONE job for Mike! He's also been painting on the side.....He could choose to take the easy way out, he could even file for disability if he really wanted, but he is such a hard worker, and always puts his family first! I don't know many people like him!
Please pray for:
We had a talk with the kids about Mike starting the injections. They did great, didn't really have many questions, and wanted to carve pumpkins right away. I think they handled it very well. But, the we haven't started yet, and the nurse will be here, I just really don't want them to worry at all!
Continued energy for Mike.
Two main symptoms still persist: fatigue and hand pain/numbness. This continues to be very frustrating for Mike, and it's hard for me to see him struggle.
With great support from my family and friends, I quickly overcame what most people call my first really 'panic attack' episode, that even landed me in ER. I feel fine now, but I think everything just caught up to me...
And lastly, we have had to rely on our family for daycare everyday over the past few weeks, and the next few weeks. They have been so wonderful! Hopefully in the near future, we will have our awesome Laury back, but until then, we thank my parents, sisters, Mike's parents, and Aunt Mary for always being there to help!
Many songs have helped throughout this journey, my favorite is Mercy Me, bring the rain....
"I can count a million times, people asking me how I, can praise You after all that I've been through...... I draw closer through these times......Bring me anything that brings You glory.....I know they'll be days when this life brings me pain, but if that's what if take to praise You, Jesus bring the rain..."
Friday, October 9, 2009
Mike got called back to work!
Wow, were we surprised when Tiara called Mike today. He's been laid off since January. God is great! We are very excited, yet this adds some additional stress to our lives right now. Having Mike home everyday with the kids has been great, he's been their taxi driver! Now it's back to relying on the help of my parents. We would be lost without their help! Everyday they will have to help with rides to or from school. Also, Mike will be starting medications in 2 weeks for the MS. And he is going to also stay working part-time at Walmart deli (he just got a raise too!). So mainly this update is to ask for prayers. I am usually stubborn when asked if I need help, but not anymore, not when it comes to asking for prayers!
Please pray for:
Energy for Mike ~ I'm sure working 2 jobs and still being an awesome dad/husband is going to wear him out! (It amazes me what he does in one day!)
No side effects from the medication (shot)
Numbness to go away/lessen ~ Mike continues to have leg/hand numbness. I'm sure this is very scary for him, and extremely frustrating.
Me! ~ I need to be a great support for Mike, and I'm having a real hard time talking about all of this with Mike. I haven't read a single book from Dr. Landon regarding the meds. I'm just really struggling to talk to HIM about this, it just scares me.
Thank you again for all the support! Everyone's encouraging words, cards, prayers, calls, and continued meals have been awesome! We feel so blessed.
Wow, were we surprised when Tiara called Mike today. He's been laid off since January. God is great! We are very excited, yet this adds some additional stress to our lives right now. Having Mike home everyday with the kids has been great, he's been their taxi driver! Now it's back to relying on the help of my parents. We would be lost without their help! Everyday they will have to help with rides to or from school. Also, Mike will be starting medications in 2 weeks for the MS. And he is going to also stay working part-time at Walmart deli (he just got a raise too!). So mainly this update is to ask for prayers. I am usually stubborn when asked if I need help, but not anymore, not when it comes to asking for prayers!
Please pray for:
Energy for Mike ~ I'm sure working 2 jobs and still being an awesome dad/husband is going to wear him out! (It amazes me what he does in one day!)
No side effects from the medication (shot)
Numbness to go away/lessen ~ Mike continues to have leg/hand numbness. I'm sure this is very scary for him, and extremely frustrating.
Me! ~ I need to be a great support for Mike, and I'm having a real hard time talking about all of this with Mike. I haven't read a single book from Dr. Landon regarding the meds. I'm just really struggling to talk to HIM about this, it just scares me.
Thank you again for all the support! Everyone's encouraging words, cards, prayers, calls, and continued meals have been awesome! We feel so blessed.
Thursday, October 1, 2009
Welcome to our blog!
We thought it would be a great idea to start a blog with everything going on in our lives right now. This is an easy way for everyone who wants to be updated on in our lives, to make sure you get the correct info! :)
We thought it would be a great idea to start a blog with everything going on in our lives right now. This is an easy way for everyone who wants to be updated on in our lives, to make sure you get the correct info! :)
For those of you who don't know, Mike has been diagnosed with Multiple Sclerosis. He was diagnosed at the end of August. Life has been a whirlwind since then. I don't even know where to begin. It started with days of leg, arm, and abdomen numbness. Then the days turned into weeks. Mike had me schedule a doctor's appointment, which he doesn't go to the doctor ever, so I knew it was really bothering him. The doctor ordered a brain MRI after hearing his symptoms. Two days later we went for the MRI. And the next morning we were called into our doctor's office for the life-changing results. We were then sent to a neurologist, Dr. Landon. He ordered a few more tests, a spinal tap and a MRI of his back/neck, and more blood work. We went Monday for the results. The MRI did confirm he has MS, he has lesions on his brain, and cervical(neck/shoulder are). No lesions were found on the thoracic (mid-back) MRI, so Dr. Landon said that was good. A blood test Dr. Landon ordered confirmed he had no myelin spilling into his spinal cord, which was also VERY good news. (That would have been a bad prognosis). So now we have tons on material to read about regarding medications, which is going to be a shot, either daily, or possibly every other day, we are not sure yet. We have a follow-up appt with Dr. Landon to start meds in about 2 weeks.
So as I type all of this, it still doesn't feel real. We are just taking each day at a time. Our faith is what is getting us through this, and the support of our family and friends has been unbelievable. Everyone who has been praying for us, thank you from the bottom of our hearts. All of the meals, the desserts, the goodies, the cards, the calls, the money, everything has been so overwhelming, it's really what's getting us through. Mike also has 4 days of steroid IV treatments in the hospital. This was done to get rid of this 'flare-up.' Most of his symptoms are gone, he still has fatigue, and hand numbness, but he's feeling much better. The medication he will be started on will reduce the number of flare-ups, and when he does have a flare-up, it will hopefully be milder if he's on medication. So hopefully things are going to be settling down here soon! The main concern now is medication choice, as they all cause side effects.
Please pray for:
Energy for Mike
Numbness to continue to go away
Deciding on the right medication
The Economy (Mike is still laid off!)
Good Insurance Coverage
Hopefully very soon the blog updates will be all about the kids, school/sports activities, holidays, vacations, etc. We will also keep everyone updated on Mike through this blog, it's easier than phone calls to everyone, and facebook updates! :)
Thank you again to everyone, God has blessed us over and over, and has truly blessed us with an awesome family and friends, and co-workers!!!
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