Hi Friends and Family,
Tonight we are praying specifically for patience (for Michelle especially) and wisdom for the doctors.
Michelle has experienced an increase in pain this past week (as I think I mentioned before) as well as increased headaches. She contacted the immunologists late last week - one doctor recommended going back on to steroids for another 3 months as she felt this was a "flare-up". The other immunologist (in the same clinic) is recommending that we wait another week and re-assess. He said Michelle's "muscles had a big injury so he's not surprised that she hurts all over". Therefore, he increased Michelle's pain meds as he (and we) want to keep Michelle off steroids if possible as she's already been taking them for 2 months. She is still taking the methotrexate for at least another 6 months as well.
Michelle mentions that the pain she is experiencing now is a different kind of pain than before, in that "the muscles feel like they've all been pulled, not the burning pain she originally had." Also, her headache has improved somewhat, although we don't know if that was related to steroid withdrawal or if the pain meds are having some affect on that too. Regardless, it's been a rather difficult week for Michelle.
So, we try (and pray) to wait patiently on the Lord asking Him for wisdom re: the course of treatment/action we are to follow and that the doctors can effectively diagnose the cause of this new pain. We give praise too that the results of the abnormal mammography/BSGI all came back negative! Even though that wasn't the biggest concern for us, it's good to be able to close that window. More to come later this week... We thank God for each and all of you standing in the gap for us in thoughts and prayers! Thank you!
Jack (Michelle, Julia, and Jaclyn)
Monday, July 14, 2008
Thursday, July 10, 2008
An update (of sorts)
Hello Dear Friends and Family,
I call this an update "of sorts" as we really do not have much to update. Several have asked about the test results of Monday's BSGI test, but we still have not heard anything back. Apparently St Paul Radiology did not properly send over the previous mammogram image for the Rads at St John's to use as a comparison (same Rad group reads both?), so as of tonight our primary care doctor did not have any results yet to share (also a reason I haven't blogged for a few days).
Michelle has not been feeling really well lately (the last few days). She has had a headache since Monday night and has had a lot of pain return. She contacted her Immunologist again who is now saying he wants to put Michelle back on more steroids. Michelle's prior steroid pill prescription has tapered off this last Monday so we were hoping that maybe Michelle was feeling some of the "withdrawal" that we were expecting? Michelle went in this evening at the Immunologist's request to get another baseline blood draw for when they start her on steroids again - so we should hear the results of that tomorrow. They will check CK levels and several other things too. An item of praise is that Michelle tested out driving again on Wednesday night and this morning was able to take the girls to Shakopee for an outing with the Boschs and Beckerings! I think she really enjoyed the freedom that comes with that!
The other news is that we're an "empty house" again. We were sad to say "Goodbye" to my brother Mark who left yesterday morning back to West Michigan. We really appreciated the time he spent taking care of the girls, walks to the park, making cookies from scratch with Julia, and two fabulous dinners for all of us! I'm attaching two pictures of one of the park times (Jaclyn and Julia still ask when "Uncle Whiskers" is coming back).
I will write again once we have some more results to share. Thanks for your continued thoughts and prayers on our behalf!
Love,
Jack (Michelle, Julia, and Jaclyn)
I call this an update "of sorts" as we really do not have much to update. Several have asked about the test results of Monday's BSGI test, but we still have not heard anything back. Apparently St Paul Radiology did not properly send over the previous mammogram image for the Rads at St John's to use as a comparison (same Rad group reads both?), so as of tonight our primary care doctor did not have any results yet to share (also a reason I haven't blogged for a few days).
Michelle has not been feeling really well lately (the last few days). She has had a headache since Monday night and has had a lot of pain return. She contacted her Immunologist again who is now saying he wants to put Michelle back on more steroids. Michelle's prior steroid pill prescription has tapered off this last Monday so we were hoping that maybe Michelle was feeling some of the "withdrawal" that we were expecting? Michelle went in this evening at the Immunologist's request to get another baseline blood draw for when they start her on steroids again - so we should hear the results of that tomorrow. They will check CK levels and several other things too. An item of praise is that Michelle tested out driving again on Wednesday night and this morning was able to take the girls to Shakopee for an outing with the Boschs and Beckerings! I think she really enjoyed the freedom that comes with that!
The other news is that we're an "empty house" again. We were sad to say "Goodbye" to my brother Mark who left yesterday morning back to West Michigan. We really appreciated the time he spent taking care of the girls, walks to the park, making cookies from scratch with Julia, and two fabulous dinners for all of us! I'm attaching two pictures of one of the park times (Jaclyn and Julia still ask when "Uncle Whiskers" is coming back).
I will write again once we have some more results to share. Thanks for your continued thoughts and prayers on our behalf!
Love,
Jack (Michelle, Julia, and Jaclyn)
Sunday, July 6, 2008
The beginning of another week...
Mom and Dad Brouwer left for home this morning and my brother Mark came late this afternoon! The girls were sad to see Mom and Dad leave but excited to see Uncle Mark who they adore. We want to thank Mom and Dad Brouwer for spending the last 11 days with us, helping take care of the girls, us, and the house. The girls had a lot of fun playing with them and spending quality time together. Dad even spent one whole day holding Jaclyn when she was so sick last week with a high fever, she just wanted to cuddle with Grandpa. We were also able to get several "projects" done around the house and we were even able to catch a Twins/Tigers game - the Twins won, sorry Mom and Dad :-)!
Scott Mellema helped with one of those projects. He sacrificed A LOT of time to help us lay tile in our bathroom (Dad pulled out the carpet). The tile looks great - thanks so much Scott!
A huge thank you to both Linda Ribbens and Marcia Pulscher for making us homemade, delicious meals. We have been so blessed by our Calvary family!
Michelle is doing really well. The combination of steroid drugs seems to be working great. She is just tired early in the evening and her arms still hurt but only at night. Her energy is back and she can't wait to start physical therapy Aug. 1st to gain back her muscle strength. Please pray for Michelle tomorrow as she has her BSGI test at St. John's hospital.
Scott Mellema helped with one of those projects. He sacrificed A LOT of time to help us lay tile in our bathroom (Dad pulled out the carpet). The tile looks great - thanks so much Scott!
A huge thank you to both Linda Ribbens and Marcia Pulscher for making us homemade, delicious meals. We have been so blessed by our Calvary family!
Michelle is doing really well. The combination of steroid drugs seems to be working great. She is just tired early in the evening and her arms still hurt but only at night. Her energy is back and she can't wait to start physical therapy Aug. 1st to gain back her muscle strength. Please pray for Michelle tomorrow as she has her BSGI test at St. John's hospital.
Thursday, July 3, 2008
Mom and Dad Brouwer
Mom and Dad have had a lot of fun with the girls! The first pictures are of Julia and Grandma planting. They both love flowers! Check out Julia's gardening attire :-) The last picture was of an intense soccer game - Jaclyn and Grandma vs Julia (see Jaclyn sacrificing her body :-) ).
Tomorrow we'll post another update on what and how we've been doing the last few days!
Edgerton Memories
Here are some cute pictures the girls wanted to add. The first pictures are Julia and Jaclyn taking their daily ride with Grampa Gramps on the lawn tractor. The next picture is of Julia and Jaclyn helping Grandma hang wash outside - they were so proud to be able to help! The next picture is of Julia in her favorite fishing hat getting ready to leave with Grampa Gramps on one of their daily fishing excursions. The last picture is Jaclyn on one of the bike rides. The girls still ask when they can go back to Edgerton to stay with Grandma and Grampa Gramps.
Sunday, June 29, 2008
Another quick update
Just a quick update tonight with a prayer request and a praise....
First, the prayer request: Julia starting getting sick Saturday morning. She has been very listless, has been fighting a high fever (between 101 and 103) for the duration and she had a bad night last night. We're alternating Tylenol and Motrin but it doesn't seem to really knock the fever down much. Jaclyn had similar fevers late last week but Julia's strain seems to be worse. Late this afternoon now Julia was also feeling nauseous so it could be another long night - please pray for quick healing for her - we have a doctor's appt for her in the morning.
Next, the praise: Michelle's lab results came back good. Michelle's liver is still tolerating the increased methotrexate well, her hemoglobin was low, so she needs to increase her iron, the CK levels were great - around 100. The only concern was with her lymphocytes, which came back very low. They are typically at 24%, but Michelle's were at 2%. So, we're trying to determine exactly what that means.
Of course, with Dad Brouwer around, we HAD to start a project. So, on Friday he pulled the carpet out of our master bath and Saturday we put some cement board down in preparation for laying some tile. We never seem to run out of things to do while Mom and Dad B are around.... we've sure been keeping them busy!
Thanks again for your prayers on our behalf!!!
Jack
First, the prayer request: Julia starting getting sick Saturday morning. She has been very listless, has been fighting a high fever (between 101 and 103) for the duration and she had a bad night last night. We're alternating Tylenol and Motrin but it doesn't seem to really knock the fever down much. Jaclyn had similar fevers late last week but Julia's strain seems to be worse. Late this afternoon now Julia was also feeling nauseous so it could be another long night - please pray for quick healing for her - we have a doctor's appt for her in the morning.
Next, the praise: Michelle's lab results came back good. Michelle's liver is still tolerating the increased methotrexate well, her hemoglobin was low, so she needs to increase her iron, the CK levels were great - around 100. The only concern was with her lymphocytes, which came back very low. They are typically at 24%, but Michelle's were at 2%. So, we're trying to determine exactly what that means.
Of course, with Dad Brouwer around, we HAD to start a project. So, on Friday he pulled the carpet out of our master bath and Saturday we put some cement board down in preparation for laying some tile. We never seem to run out of things to do while Mom and Dad B are around.... we've sure been keeping them busy!
Thanks again for your prayers on our behalf!!!
Jack
Thursday, June 26, 2008
Wednesday Night/Early Thursday Morning Update
I am having another night where my brain is just racing. The doctors warned me again that doing a steroid infusion does cause this wired and jittery feeling and "that you just want to literally run home & clean your whole house" (but since my awesome best friend from college, Sheri, had worked sooo hard at cleaning almost everything spotless especially our bedroom area, I was totally peaceful letting that part go :-) but my mind and body are going a mile a minute about everything else :-) ). They even gave me additional sleeping pills (Ambien) to take along with my other sleeping pills. I did fall asleep right away (the world was initially moving taking so many sleeping pills :-)) but I'm now WIDE awake and I'm sitting here drinking my warm milk with some chocolate (hopefully, that will help). The steroid infusion is like having a month's worth of steroids in one time - so it is pretty powerful. They said this infusion should last me until the 4th week of July. I am also on steroid pills so I think the combo is a lot for my body. They are starting to taper the steroid pills to help my body (I guess your body gets addicted to steroids). Please pray that this last infusion will be successful and "kill/pop" all the remaining antibodies. Please also pray that my body continues to heal and that I go into remission and STAY there. My one doctor said that she had been on steroids last week for only 6 days and that it made her cranky. I feel like I have had really no bad side effects from being on steroids so long, the only notable ones is that my face turned round and my forearms swelled. Please pray that I have no other side effects from being on Steroids and Methotrexate for this length of time. As the doctors have said, it is a fine balance of giving the right meds to do what they need to do but not hurt my body. The doctors said that they want me to take this next month to "heal my body" (convalescing/recuperating) before I start PT. Please pray that I am able to not do anything that would hurt my body since it is tempting to now that I am getting my energy back. Please also pray that my range of motion starts to improve. The doctor gave me two stretches that she would like me to do daily (she ordered me not to do any exercising - as you all know, that will really not be difficult for me to follow :-) ). They want me to stay away from anything that could cause any more inflammation in my muscles (I can't even have back rubs, which Jack told me that since he hates to give back rubs this is a doctor's order he plans to follow for the rest of our marriage :-) ). Every day my muscles seem to be getting weaker (especially my upper body) and my range of motion worse. The doctors said that this will ALL improve once I start PT - thank the Lord!!! There may be some permenant damage to some of my muscles due to the severity of the attacks, but we will find out after PT. This seems so minor, I just can't wait to get my range of motion and strength back.
I also have a HUGE thank you to one of Nana's close group of friends. They love Nana so much that they tried to think of a special and unique way to help me long distance. So they sent their love and care all the way from CA by giving us some money for a cleaning lady. Since I can't push a vacuum yet they thought I could hire someone using this VERY generous gift of money while I was healing and gaining my strength back. I've never had a cleaning lady (well, a "real" one :-) except for all my wonderful friends that helped clean our house from vacuuming to bathrooms during this time) so it will be such a blessing especially since we are home now almost everyday except for all the doctor appts. Thanks for such a thoughtful gift.
Thank you so much Cheryl and Ron Vis for watching all the kids from our church date night group for us this Sat. (although these kids are SO much FUN together it is still a HUGE sacrifice to give up your date night and watch ALL the "very active & into everything" :-) kids instead.) All the kids were supposed to be here but the Vis family (along the other parents) decided to bless us by taking our place in the rotation. Thank you so much to each of you - you are all such a gift from God and we love being part of this group.
I could keep writing for a long time thanking people but it still hurts to type so I am going to try reading now.
Love you,
Michelle
I also have a HUGE thank you to one of Nana's close group of friends. They love Nana so much that they tried to think of a special and unique way to help me long distance. So they sent their love and care all the way from CA by giving us some money for a cleaning lady. Since I can't push a vacuum yet they thought I could hire someone using this VERY generous gift of money while I was healing and gaining my strength back. I've never had a cleaning lady (well, a "real" one :-) except for all my wonderful friends that helped clean our house from vacuuming to bathrooms during this time) so it will be such a blessing especially since we are home now almost everyday except for all the doctor appts. Thanks for such a thoughtful gift.
Thank you so much Cheryl and Ron Vis for watching all the kids from our church date night group for us this Sat. (although these kids are SO much FUN together it is still a HUGE sacrifice to give up your date night and watch ALL the "very active & into everything" :-) kids instead.) All the kids were supposed to be here but the Vis family (along the other parents) decided to bless us by taking our place in the rotation. Thank you so much to each of you - you are all such a gift from God and we love being part of this group.
I could keep writing for a long time thanking people but it still hurts to type so I am going to try reading now.
Love you,
Michelle
Wednesday, June 25, 2008
Quick Update
Just a quick update today - everyone took a walk to the close park this morning and the girls had a lot fun playing with Mom and Dad (Grandma & Grandpa)! Dad took Michelle for a steroid infusion this afternoon and they were able to meet with both Immunologists that she's been seeing (Dr. Shapiro and his Phys Asst Kristin). They were both pleased with her progress and affirmed the treatment plan that I wrote about yesterday. Depending on Michelle's progress over the next weeks or so, this may be the last steroid infusion with the remainder of the steroids in pill form daily through July. The girls had a great time spending the afternoon playing/swimming/weeding with Grandma for over 5 hours (it took a long time getting the infusion, meeting with the doctors, & then picking up some new meds), but Grandma hit the sack early tonight - I think all three "girls" may have played too hard this afternoon :-)!
Thanks to Schwitters for a GREAT meal tonight - and to Nate and Sara DeKam in advance for tomorrow night's meal from Boston Market!
Good night!
Jack
Thanks to Schwitters for a GREAT meal tonight - and to Nate and Sara DeKam in advance for tomorrow night's meal from Boston Market!
Good night!
Jack
Tuesday, June 24, 2008
Tuesday Update
Hi again,
I'm sorry it has taken a while to update - we have been pretty busy while Sheri was here!
First of all, we wish to share some praise. Michelle's condition continues to improve. Each day she is able to do more and more, but by the end of the day she is pretty sore. She is still unable to drive and unable to lift Jaclyn, but she continues to have increased energy and seems more mobile.
The update from the doctors is that we have decided to take the advice of the Immunologist (actually, the team of Immunologists), not the Rheumatologist. What this means is that Michelle will continue to be on steroid treatments through the month of July. This will include periodic steroid infusions (she has one tomorrow) along with the pill form. She will also continue Methotrexate for 6-12 months. It also means that Michelle will continue to keep using her arms and legs until they hurt, and then no more (they call this a period of "convalescence"). They want her to focus on healing her body during this time. Starting in August, Michelle can begin physical therapy/rehab, at which point we're hopeful that some of Michelle's strength will return.
A special note of thanks to Sheri - for watching the girls, spending 6 days caring for our family, and REALLY (and we mean REALLY) helping around the house! The girls had so much fun with the special one-on-one time with Sheri that they normally do not get with all the kids around.
Also, thanks to Kim Attema for a delicious dinner and desert, and also to Carla (MOPS) for a great dinner! We also want to thank Noelle, Traci, Mary, and Kate for watching the girls and having some awesome play dates. We have also been blessed by my parents who have arrived safely tonight and will be with us through the 4th of July weekend! We have projects lined up, but mostly we're just looking forward to spending some quality time together. So - our prayer request is for the girls to have a good transition and that we don't wear Mom and Dad Brouwer out!
Again, we wish to thank all of you for your prayers, cards, calls, and visits! We are truly surrounded by God's Hands and Feet - you!
Love,
Jack (Michelle, Julia, and Jaclyn)
I'm sorry it has taken a while to update - we have been pretty busy while Sheri was here!
First of all, we wish to share some praise. Michelle's condition continues to improve. Each day she is able to do more and more, but by the end of the day she is pretty sore. She is still unable to drive and unable to lift Jaclyn, but she continues to have increased energy and seems more mobile.
The update from the doctors is that we have decided to take the advice of the Immunologist (actually, the team of Immunologists), not the Rheumatologist. What this means is that Michelle will continue to be on steroid treatments through the month of July. This will include periodic steroid infusions (she has one tomorrow) along with the pill form. She will also continue Methotrexate for 6-12 months. It also means that Michelle will continue to keep using her arms and legs until they hurt, and then no more (they call this a period of "convalescence"). They want her to focus on healing her body during this time. Starting in August, Michelle can begin physical therapy/rehab, at which point we're hopeful that some of Michelle's strength will return.
A special note of thanks to Sheri - for watching the girls, spending 6 days caring for our family, and REALLY (and we mean REALLY) helping around the house! The girls had so much fun with the special one-on-one time with Sheri that they normally do not get with all the kids around.
Also, thanks to Kim Attema for a delicious dinner and desert, and also to Carla (MOPS) for a great dinner! We also want to thank Noelle, Traci, Mary, and Kate for watching the girls and having some awesome play dates. We have also been blessed by my parents who have arrived safely tonight and will be with us through the 4th of July weekend! We have projects lined up, but mostly we're just looking forward to spending some quality time together. So - our prayer request is for the girls to have a good transition and that we don't wear Mom and Dad Brouwer out!
Again, we wish to thank all of you for your prayers, cards, calls, and visits! We are truly surrounded by God's Hands and Feet - you!
Love,
Jack (Michelle, Julia, and Jaclyn)
Friday, June 20, 2008
Friday Update
Nana got home safe. It was sad for all of us to say goodbye. The girls tried to "kidnap" her so she would have to stay but it didn't work :-(. Julia loves to show everyone her "fancy" sparkly fingernails that Nana painted just before she left. We all MISS Nana - her sweet smile and fun personality!!! She worked really hard taking care of 4 "kids" here - we called her "Cinderella". These are the matching dresses Nana had gotten the girls.
My college best friend, Sheri, from Chicago flew in and "transferred" duties. She has already been such a HUGE help and the girls love having "Aunt Sheri" here - they just wish she had brought her 4 kids and dog along (the girls and Sheri's kids have grown up together).
Jack will blog tonight about the different medical opinions of my Immunologist and Rheumatologist regarding what medications I should be taking, how long, and when to start PT. Still hurts to type so I'll let Jack give the details.
Thanks for all of your prayers!!!!!!
Much Love,
Michelle
Tuesday, June 17, 2008
Tuesday Update
Please pray for Michelle's doctors tomorrow as they meet regarding her "case". The Rheumatologist and the Immunologist disagree on the medical plan for treating Michelle through the next couple of months. We will give more details tomorrow as it is already too late to get into this tonight. Please pray for wisdom as we try to determine the best course. Michelle continues to feel a little better each day, but is still on a lot of meds.
A special thanks to Rob and Jen for an awesome night on Lake Minnetonka and a spectacular home-made pizza! It was a treat to get out and the girls had a blast "driving" their boat!! Thanks too to Noelle for taking some cute pictures today of Nana and the girls!
Have a good night!
Jack
Monday, June 16, 2008
Monday Update
Hi Friends and Family,
Julia woke us up early this morning crying and complaining of pain in her left ear. She also had some bug bites that were really itching and infected (swollen). She cried off and on most of the morning until her doctor appointment (11:00). Our doctor found that she has a severe ear infection. So, she is now on Amoxicillin for the infection and Benadryl for the bug bites and was already feeling better by the end of the day today. We are starting to feel like a Pharmacy here keeping track of all of Michelle's meds - and now Julia's meds.
Michelle got her stitches out of her leg today. There was no infection and all looked well there. She is also getting some strength back in her legs. Her arms still burn when she uses them, but they are ok at rest (this is an improvement). Nana has also noticed an increase in Michelle's energy since she has been here, so we're thankful for even small improvements.
A HUGE Thanks to Traci for coming here and watching Jaclyn today while Julia was at the doctor's office!! Jaclyn had a blast playing with the boys and Julia too when she got home!
Jack
Julia woke us up early this morning crying and complaining of pain in her left ear. She also had some bug bites that were really itching and infected (swollen). She cried off and on most of the morning until her doctor appointment (11:00). Our doctor found that she has a severe ear infection. So, she is now on Amoxicillin for the infection and Benadryl for the bug bites and was already feeling better by the end of the day today. We are starting to feel like a Pharmacy here keeping track of all of Michelle's meds - and now Julia's meds.
Michelle got her stitches out of her leg today. There was no infection and all looked well there. She is also getting some strength back in her legs. Her arms still burn when she uses them, but they are ok at rest (this is an improvement). Nana has also noticed an increase in Michelle's energy since she has been here, so we're thankful for even small improvements.
A HUGE Thanks to Traci for coming here and watching Jaclyn today while Julia was at the doctor's office!! Jaclyn had a blast playing with the boys and Julia too when she got home!
Jack
Sunday, June 15, 2008
Sunday Update
I finally fell asleep after 4:30 am - long night. But it turned out good because I spent a lot of it talking to God and reading a great inspiring book, A New Kind of Normal by Carol Kent. My best friend from college (Sheri) sent me this book and Running Scared several weeks ago when this all started. These books have really helped me understand that you can have a positive new kind of normal when you trust God's faithfulness in times of changes/struggles.
I have a phone consult with my Immunologist tomorrow as we review where we are at and any new med plans. Please pray for wisdom and insight for Dr. Shapiro.
I missed my "window of opportunity" for getting the BSGI (Nuclear Medical Breast Image) this week. They have me scheduled for one in a couple weeks.
Thanks again for your prayers,
Michelle
I have a phone consult with my Immunologist tomorrow as we review where we are at and any new med plans. Please pray for wisdom and insight for Dr. Shapiro.
I missed my "window of opportunity" for getting the BSGI (Nuclear Medical Breast Image) this week. They have me scheduled for one in a couple weeks.
Thanks again for your prayers,
Michelle
Saturday, June 14, 2008
God's Faithfulness to Us
I'm not able to sleep tonight, my arms and shoulders are hurting too much so I came downstairs for some warm milk. Since we have not updated the blog, I thought I would drink my hot cocoa and write a note.
A friend emailed recently and encouraged me with this "we’ve seen God do amazing things in your life as you waited on Him – He will carry you through this too." She reminded me of all the amazing and miraculous things I have witnessed God do for our family. I am very blessed to be able to clearly see God's hand in my trials as well as my joys. God is so faithful to us - our family's song that we sing EVERY night to the girls since they were babies is "Great is Thy Faithfulness".
Nana (my birth mom from CA) is here helping take care of the girls, Jack, and me. The girls have had a lot of fun playing with her and she has helped "run the house". She has brought a lot of laughter and fun (she even smiles while changing Jaclyn's dirty diapers :-) while wearing a full princess dressup outfit with a pink diamond tiara, big pink tulle tutu, silver wand, and high heals that Julia had dressed her in :-) ).
They increased my Methotrexate pills on Friday (the chemo drug that is a total immune suppressor). Please pray that helps completely stop my immune system from attacking my muscles and that I am able to stay well. (Somehow, I am supposed to stay away from sick people - the doctor's don't understand that 2 and 5 year olds are always passing along fun "bugs" :-) ). My Immunologist said his hope in the next weeks is that these drugs (along with the Steroids) will get rid of the burning pain in my arms, shoulders, and hips. Until then, I am supposed to continue with the "arm rest" so I am not allowed to do anything that causes pain (more muscle damage). After they finally stop the antibodies that are attacking (and therefore the pain will be gone), they will immediately have me start physical therapy to gain back my muscle strength. The doctors plan to keep me on Methotrexate for the next 6 months to a year (hoping this will not allow me to have a relapse and to stay in remission). Please pray as they are still trying to figure out how many steroid infusions I'll need depending on how my body responds to the new combination of meds (they said it is a fine balance to not hurt my body with the medication but give me enough to stop the attack completely). I'll for sure be getting steroid infusions along with the steroid pills through the summer and they will re-evaluate at that time.
The pain in my arms, shoulders, and hips seems to be improving the last couple of days, as long as I don't pick up anything too heavy. Obviously, it is worse at night and the prescription sleep pills they gave me are not working well enough :-). I still can't drive so it has been hard on me to depend on people for rides and the loss of that independence. Boy, I will NEVER take good health for granted again or the ease of jumping in your car and driving to where you want to go.
My walk with the Lord has really grown through this whole experience. I am so blessed to see how God is taking the bad and making it into good. The verse I am memorizing right now that has brought me great comfort is Isaiah 58:8, "Your light shall break forth like the morning, your healing shall spring forth speedily, and your righteousness shall go before you; the glory of the Lord shall be your rear guard."
Thank you all for your prayers and support.
Love,
Michelle
A friend emailed recently and encouraged me with this "we’ve seen God do amazing things in your life as you waited on Him – He will carry you through this too." She reminded me of all the amazing and miraculous things I have witnessed God do for our family. I am very blessed to be able to clearly see God's hand in my trials as well as my joys. God is so faithful to us - our family's song that we sing EVERY night to the girls since they were babies is "Great is Thy Faithfulness".
Nana (my birth mom from CA) is here helping take care of the girls, Jack, and me. The girls have had a lot of fun playing with her and she has helped "run the house". She has brought a lot of laughter and fun (she even smiles while changing Jaclyn's dirty diapers :-) while wearing a full princess dressup outfit with a pink diamond tiara, big pink tulle tutu, silver wand, and high heals that Julia had dressed her in :-) ).
They increased my Methotrexate pills on Friday (the chemo drug that is a total immune suppressor). Please pray that helps completely stop my immune system from attacking my muscles and that I am able to stay well. (Somehow, I am supposed to stay away from sick people - the doctor's don't understand that 2 and 5 year olds are always passing along fun "bugs" :-) ). My Immunologist said his hope in the next weeks is that these drugs (along with the Steroids) will get rid of the burning pain in my arms, shoulders, and hips. Until then, I am supposed to continue with the "arm rest" so I am not allowed to do anything that causes pain (more muscle damage). After they finally stop the antibodies that are attacking (and therefore the pain will be gone), they will immediately have me start physical therapy to gain back my muscle strength. The doctors plan to keep me on Methotrexate for the next 6 months to a year (hoping this will not allow me to have a relapse and to stay in remission). Please pray as they are still trying to figure out how many steroid infusions I'll need depending on how my body responds to the new combination of meds (they said it is a fine balance to not hurt my body with the medication but give me enough to stop the attack completely). I'll for sure be getting steroid infusions along with the steroid pills through the summer and they will re-evaluate at that time.
The pain in my arms, shoulders, and hips seems to be improving the last couple of days, as long as I don't pick up anything too heavy. Obviously, it is worse at night and the prescription sleep pills they gave me are not working well enough :-). I still can't drive so it has been hard on me to depend on people for rides and the loss of that independence. Boy, I will NEVER take good health for granted again or the ease of jumping in your car and driving to where you want to go.
My walk with the Lord has really grown through this whole experience. I am so blessed to see how God is taking the bad and making it into good. The verse I am memorizing right now that has brought me great comfort is Isaiah 58:8, "Your light shall break forth like the morning, your healing shall spring forth speedily, and your righteousness shall go before you; the glory of the Lord shall be your rear guard."
Thank you all for your prayers and support.
Love,
Michelle
Thursday, June 12, 2008
Thursday Update
Julia and Jaclyn keep talking about how much fun they had at Grandpa Gramps and Grandma Sawyer's house and how they can't wait to go back. Julia even told the people at the doctor's yesterday that she wished Grandpa was here with their fishing poles so they could go fishing in the doctor's HUGE fish acquarium - she was only partially joking :-). She did go fishing almost every day at Mom and Dad's home and actually caught 16 fish one day. Another highlight she and Jaclyn keep talking about was going outside each time after it rained in their boots to go find more worms and splash in the puddles. Jaclyn also changed so much, she was talking a lot before she left but when she came back I think her vocabulary had increased by at least 50% and talking all in full sentences (making sure her opinions are WELL KNOWN :-)). That week and a half was a VERY special time for Julia and Jaclyn and they have mentioned many times how much they miss Grandpa Gramps and Grandma Grams.
I had another Mammogram today along with an Ultrasound at St. Paul Radiology. The Radiologist did tell me that my Mammogram was abnormal and they found a distortion and calcification in one area. This distortion is a possible sign of cancer but he did not want to take out a "big chunk of tissue" which would require surgery until he tried one more test. They are sending me to St. Johns hospital for a BSGI (Breast Specific Gamma Image) - a Nuclear Medical Breast Exam. If this test comes back negative, then we have a 95% chance that the distortion isn't caused by cancer. There are only two of these machines in the US and one happens to be right here - what a blessing. This test hasn't been scheduled yet, so please pray that the test can be done very soon and that the results are negative!
The Radiologist said he didn't like what he saw, that he wasn't exactly sure what to do with me, and that I was unique. This is the third medical professional to tell me almost verbatim these exact words in the last month and a half (I've always known I was unique - just not THIS unique :-) and puzzling). I am very thankful that God is in control of all of this and feel REALLY at PEACE about everything since I know God is sending me down a path He has already paved for me.
A beyond HUGE thank you to Tara for watching the girls for me today so they didn't have to sit at St. Paul Radiology's office for hours - we were there for a LONG time today with many Mammogram pictures taken over and over again while waiting for the doctors to view each one of them and have more taken and then having to do the ultrasound and meet with the Radiologist. Tara - you are the GREATEST Blessing!!! The girls loved their playdate with the boys and the special time with you!!!
My blood tests for my liver also came back great so that means I am tolerating the Methotrexate well. My Immunologist is now planning on upping my Methotrexate this Friday.
I can't say thank you enough to all my friends for their help, support, and prayers. I am so blessed to see how God is taking anything bad and making it into good.
Much Love and Thanks,
Michelle
I had another Mammogram today along with an Ultrasound at St. Paul Radiology. The Radiologist did tell me that my Mammogram was abnormal and they found a distortion and calcification in one area. This distortion is a possible sign of cancer but he did not want to take out a "big chunk of tissue" which would require surgery until he tried one more test. They are sending me to St. Johns hospital for a BSGI (Breast Specific Gamma Image) - a Nuclear Medical Breast Exam. If this test comes back negative, then we have a 95% chance that the distortion isn't caused by cancer. There are only two of these machines in the US and one happens to be right here - what a blessing. This test hasn't been scheduled yet, so please pray that the test can be done very soon and that the results are negative!
The Radiologist said he didn't like what he saw, that he wasn't exactly sure what to do with me, and that I was unique. This is the third medical professional to tell me almost verbatim these exact words in the last month and a half (I've always known I was unique - just not THIS unique :-) and puzzling). I am very thankful that God is in control of all of this and feel REALLY at PEACE about everything since I know God is sending me down a path He has already paved for me.
A beyond HUGE thank you to Tara for watching the girls for me today so they didn't have to sit at St. Paul Radiology's office for hours - we were there for a LONG time today with many Mammogram pictures taken over and over again while waiting for the doctors to view each one of them and have more taken and then having to do the ultrasound and meet with the Radiologist. Tara - you are the GREATEST Blessing!!! The girls loved their playdate with the boys and the special time with you!!!
My blood tests for my liver also came back great so that means I am tolerating the Methotrexate well. My Immunologist is now planning on upping my Methotrexate this Friday.
I can't say thank you enough to all my friends for their help, support, and prayers. I am so blessed to see how God is taking anything bad and making it into good.
Much Love and Thanks,
Michelle
Another Trip to the Radiologist
St. Paul Radiology called Michelle and they want her to go in to the Maplewood clinic. They saw something on the mammogram that they wanted to check out again. So, she will be going in and then waiting to talk to a radiologist. Please pray for Michelle as she waits to find out the results. She is glad that they are being cautious and want to check things out more closely.
heidi
heidi
Wednesday, June 11, 2008
Wednesday Update Part II (from Jack)
A huge thank you to Jennifer Bentz for watching Jaclyn today while Julia had a doctor's appointment. We think the reason the girls may have been struggling some is that we found out today that Julia has a pretty good virus which is causing her to cough (constantly - day or night). She has had this cough since the day before she left for Edgerton with Grandma and Grampa Gramps and it just won't go away. We had a short night last night as Julia woke up around 4:25am and never fell back asleep as we couldn't stop her coughing with either cough medicine or honey. Now she is on some meds which we pray take hold quickly. We pray too that Jaclyn doesn't pick up whatever virus it is that is going around (or Michelle either for that matter!).
Thanks too to Cheryl Vis for the meal!!!
Thanks too to Cheryl Vis for the meal!!!
Wednesday Update
My body is still not responding like the doctors had hoped so it is crucial that this current med plan from my Immunologist (high doses of Steroid pills and Methotrexate) will work in the next couple of weeks. Please pray that my body responds and my antibodies (immune system) stop attacking my muscles. Then I can finally get on with the healing process (physical therapy, etc.). Please also pray for wisdom & insight for my Immunologist and the new doctor (a Rheumatologist) they are sending me to this week. My Immunologist is having a phone consult with this new doctor tomorrow and they are going to try to get me in to see him this week. They want to consult with him to see if there are any other tests that should be run, possible new medication plan, etc.
I was somewhat discouraged today because yesterday and today my arms and shoulders have had the burning pain without doing ANYTHING. I still can't pick up a spoon without it hurting, wash my own hair or blow dry, dress my upper body to the bigger more important things like not being able to pick up Jaclyn. But I had some GREAT news today that my CK numbers are decreasing significantly (down to under 200). My prayer now is that my upper body pain will also decrease.
Please pray for patience for me as I am still on total "arm rest" (not using my arms/shoulders).
CT scan results were great - no cancer. Still waiting for the other results.
Thanks for your prayers, please pray that this will stay away from my heart, lungs, and throat and my antibodies will stop attacking my muscles.
Much Love,
Michelle
I was somewhat discouraged today because yesterday and today my arms and shoulders have had the burning pain without doing ANYTHING. I still can't pick up a spoon without it hurting, wash my own hair or blow dry, dress my upper body to the bigger more important things like not being able to pick up Jaclyn. But I had some GREAT news today that my CK numbers are decreasing significantly (down to under 200). My prayer now is that my upper body pain will also decrease.
Please pray for patience for me as I am still on total "arm rest" (not using my arms/shoulders).
CT scan results were great - no cancer. Still waiting for the other results.
Thanks for your prayers, please pray that this will stay away from my heart, lungs, and throat and my antibodies will stop attacking my muscles.
Much Love,
Michelle
Tuesday, June 10, 2008
Morning by Morning New Mercies We See
Dear Friends and Family,
Unfortunately, Michelle and the girls had a rougher day today. Michelle's arms and shoulders had more pain than normal, even when resting. She put a call into her doctor but was discouraged to not hear back from her. The girls also struggled a bit more today than normal - we know Julia is especially more concerned/worried with Michelle being sick, but of course Jaclyn feeds off (imitates) everything Julia does. Julia keeps asking why God does not heal Mommy when she has asked God everyday to make Mommy well again. So, our specific prayer request for today/tonight is improvement in Michelle's condition which we think will also help the girls. We take comfort and hope in God's promises and faithfulness -and we pray for new mercies in the morning.
A special thanks to Kathleen Beekman for the meal and to Heidi VanHulzen for dessert and for dropping off the MP3 player pre-loaded with books! Thanks too for your cards, calls, and prayers on our behalf. We really appreciate (and thank God for) all you do for us!
Good night!
Jack
Unfortunately, Michelle and the girls had a rougher day today. Michelle's arms and shoulders had more pain than normal, even when resting. She put a call into her doctor but was discouraged to not hear back from her. The girls also struggled a bit more today than normal - we know Julia is especially more concerned/worried with Michelle being sick, but of course Jaclyn feeds off (imitates) everything Julia does. Julia keeps asking why God does not heal Mommy when she has asked God everyday to make Mommy well again. So, our specific prayer request for today/tonight is improvement in Michelle's condition which we think will also help the girls. We take comfort and hope in God's promises and faithfulness -and we pray for new mercies in the morning.
A special thanks to Kathleen Beekman for the meal and to Heidi VanHulzen for dessert and for dropping off the MP3 player pre-loaded with books! Thanks too for your cards, calls, and prayers on our behalf. We really appreciate (and thank God for) all you do for us!
Good night!
Jack
Monday, June 9, 2008
Monday Update
Hi Friends and Family - just a short note tonight...
Nana (Michelle's birth-mom Nancy) arrived safely yesterday - the girls were excited to see her! Julia and Jaclyn are adjusting well to life at home - they had fun playing in our backyard all day today! When I came home from work tonight, both Nana and Julia (our Fancy Nancy) were dressed up in play ballet outfits and dancing to a video!
Michelle is still taking the combination of Methatrexate and steroid pills, but we still haven't seen any improvement in Michelle's shoulders, arms, and hips. Legs are still doing ok. We did receive some great news today though that the CT scan Michelle had last week was negative! Praise God!
Again, a special thanks to Cheryl Brill and Allison Miedema for fabulous meals!! We truly are being spoiled! Thank you too for your prayers for my travels yesterday - the trip was uneventful (even MN State Trooper Smith let me off with a warning :-) ) and I was able to spend a nice afternoon with Mom and Dad Sawyer.
Have a great week!
Jack
Nana (Michelle's birth-mom Nancy) arrived safely yesterday - the girls were excited to see her! Julia and Jaclyn are adjusting well to life at home - they had fun playing in our backyard all day today! When I came home from work tonight, both Nana and Julia (our Fancy Nancy) were dressed up in play ballet outfits and dancing to a video!
Michelle is still taking the combination of Methatrexate and steroid pills, but we still haven't seen any improvement in Michelle's shoulders, arms, and hips. Legs are still doing ok. We did receive some great news today though that the CT scan Michelle had last week was negative! Praise God!
Again, a special thanks to Cheryl Brill and Allison Miedema for fabulous meals!! We truly are being spoiled! Thank you too for your prayers for my travels yesterday - the trip was uneventful (even MN State Trooper Smith let me off with a warning :-) ) and I was able to spend a nice afternoon with Mom and Dad Sawyer.
Have a great week!
Jack
Saturday, June 7, 2008
Sunday prayer request
A specific prayer request for Sunday. I will be traveling to Edgerton to pick up Julia and Jaclyn from Grandpa and Grandma Sawyer and bringing them back home. Please pray for safe travel, but also for a smooth transition as they've been gone 10days! Thanks Mom and Dad for taking such good care of them!
Also, a special thanks to Pastor Jack and Roseanne VanMarion, Tim and Linda Ribbens for their visit today! We appreciated a prayer of healing for Michelle and annointing of oil as stated in James 5:13-16.
Thanks also to Heidi for buying and dropping off a "huge" pill dispenser - yesterday Tara counted out that Michelle had to take 30 pills! Thanks also to Heather for coming over to clean, make lunch for us, and keep us laughing!
Thanks to all of our friends for their support and prayers!
Jack
Thanks to all of our friends for their support and prayers!
Jack
Friday, June 6, 2008
Couple Time
Jack and Michelle were able to spend some quality time together. Jack took the day off of work to be with Michelle as well as work at his "honey do" list at home!
There was not much change in Michelle's symptoms today---which is good and bad. Good, because that means she's not getting any worse, bad, because it also means she's not feeling much improvement. Her legs are not hurting like they were earlier in the week--Praise God! She is able to walk around the house without her legs hurting, but she is feeling winded quickly.
Another concern Michelle has is that she can tell she is losing muscles in her arms. She desperately wants the pain to go away so that she can begin physical therapy. Holding a book is now made more difficult not by pain, but by the inability to physically hold it. Michelle was also unable to push herself out of the bathtub last night. That was the first time that has happened. Please pray that her immune system will stop attacking her muscles, the pain will subside quickly and that she will be able to start PT soon!
Throughout the weeks Michelle has experienced many God moments. It started when she first made appointments to see the immunologist, dermatologist and now I forgot the third one...By God's grace she was able to get in to see all of them through cancellations of other appointments and God's perfect timing. She has experienced God's presence because she has not once had to worry about who was going to take care of the girls. Many of you have helped to watch them and now her family has been fabulous in being with them. She also experienced a God moment when she was able to get all the necessary tests scheduled in one day. She had asked me to ask my brother (a radiologist) if there was a difference in CT scans and if she should make her appointment at a specific place. I was unable to talk to him because he was busy working, but she called St. Paul Radiology and spoke with someone who was so helpful and knowledgeable and told her exactly which clinic to go to and even helped save money by going to a clinic instead of the hospital! Michelle definitely considers that a God moment!
Many of you may not know that Jack and Michelle had opted for catastrophic insurance beginning January 1st of this year. For the last 4 years, they would've saved money going that route...that changed with all of this. They trust in God and believe that He will provide, but keep that in your prayers also. They have a very large deductible that has to be met. We have no doubt that they will meet it---which is unfortunate.
We sang the following song in our church choir this spring. It seemed like a God moment at the time because we had just heard about the professors at Dordt College that had been in a very serious car accident. The words have been going around in my head a lot lately also in thinking about Michelle.
"Healer of Our Every Ill" by Marty Haugen
Refrain:
Healer of our ev’ry ill,
light of each tomorrow,
give us peace beyond our fear,
and hope beyond our sorrow.
You who know our fears and sadness,
grace us with your peace and gladness,
Spirit of all comfort: fill our hearts.
In the pain and joy beholding
how your grace is still unfolding,
give us all your vision: God of love.
You who know each thought and feeling,
teach us all your way of healing,
Spirit of compassion: fill each heart.
Give us strength to love each other,
ev’ry sister, ev’ry brother,
Spirit of all kindness: be our guide.
There was not much change in Michelle's symptoms today---which is good and bad. Good, because that means she's not getting any worse, bad, because it also means she's not feeling much improvement. Her legs are not hurting like they were earlier in the week--Praise God! She is able to walk around the house without her legs hurting, but she is feeling winded quickly.
Another concern Michelle has is that she can tell she is losing muscles in her arms. She desperately wants the pain to go away so that she can begin physical therapy. Holding a book is now made more difficult not by pain, but by the inability to physically hold it. Michelle was also unable to push herself out of the bathtub last night. That was the first time that has happened. Please pray that her immune system will stop attacking her muscles, the pain will subside quickly and that she will be able to start PT soon!
Throughout the weeks Michelle has experienced many God moments. It started when she first made appointments to see the immunologist, dermatologist and now I forgot the third one...By God's grace she was able to get in to see all of them through cancellations of other appointments and God's perfect timing. She has experienced God's presence because she has not once had to worry about who was going to take care of the girls. Many of you have helped to watch them and now her family has been fabulous in being with them. She also experienced a God moment when she was able to get all the necessary tests scheduled in one day. She had asked me to ask my brother (a radiologist) if there was a difference in CT scans and if she should make her appointment at a specific place. I was unable to talk to him because he was busy working, but she called St. Paul Radiology and spoke with someone who was so helpful and knowledgeable and told her exactly which clinic to go to and even helped save money by going to a clinic instead of the hospital! Michelle definitely considers that a God moment!
Many of you may not know that Jack and Michelle had opted for catastrophic insurance beginning January 1st of this year. For the last 4 years, they would've saved money going that route...that changed with all of this. They trust in God and believe that He will provide, but keep that in your prayers also. They have a very large deductible that has to be met. We have no doubt that they will meet it---which is unfortunate.
We sang the following song in our church choir this spring. It seemed like a God moment at the time because we had just heard about the professors at Dordt College that had been in a very serious car accident. The words have been going around in my head a lot lately also in thinking about Michelle.
"Healer of Our Every Ill" by Marty Haugen
Refrain:
Healer of our ev’ry ill,
light of each tomorrow,
give us peace beyond our fear,
and hope beyond our sorrow.
You who know our fears and sadness,
grace us with your peace and gladness,
Spirit of all comfort: fill our hearts.
In the pain and joy beholding
how your grace is still unfolding,
give us all your vision: God of love.
You who know each thought and feeling,
teach us all your way of healing,
Spirit of compassion: fill each heart.
Give us strength to love each other,
ev’ry sister, ev’ry brother,
Spirit of all kindness: be our guide.
Thursday, June 5, 2008
Thursday News
Michelle endured a long day of tests today! Her spirits have been kept up by the thoughts and prayers of all of you.
This morning Tara brought Michelle to her Mammogram and Chest x-ray. Those went well and Michelle should hear back about those tests on Tuesday. While they were waiting for those tests Michelle showed Tara a spot on her leg that was also there last week, but they both thought it looked a little different today. It looks somewhat like a bug bite, but was spreading a little bit. Because of that, Michelle also went to a dermotologist today to get that spot biopsied. The doctor wouldn't even take a guess at what it was! Michelle's exhibited such different symptoms of different things that no one knows what to think :-) Michelle's dear friend, Jen Sandom, took her to that appointment as well as her CT scan. Normally the biopsies take 10 days, but the doctor requested the results stat, so hopefully those will be back in 4 days. The CT scan will take 2 working days to read, so Monday is the day for those results.
Thank you to Kathleen for providing Jack and Michelle with orange juice and fruit today! They were very appreciative of the kind gesture and Jack was glad to have one thing crossed off his "honey do" list!
Waiting for these test results will seem like eternity for Michelle. Pray that she has patience while waiting. She is also unsure what she is hoping for from the results. On the one hand, if there is cancer, than that can be treated and they can stop the dermatomyositis. On the other hand, does one ever pray that they DO have cancer? She is also unsure if she wants to consult with a chiropractor and try alternative methods of treatment.
Thank you for your continued prayers. It is my privilege to update this for Michelle...and I'll be sure to check it for updates (hint, hint, Jack!!) when we are on vacation. Heidi
This morning Tara brought Michelle to her Mammogram and Chest x-ray. Those went well and Michelle should hear back about those tests on Tuesday. While they were waiting for those tests Michelle showed Tara a spot on her leg that was also there last week, but they both thought it looked a little different today. It looks somewhat like a bug bite, but was spreading a little bit. Because of that, Michelle also went to a dermotologist today to get that spot biopsied. The doctor wouldn't even take a guess at what it was! Michelle's exhibited such different symptoms of different things that no one knows what to think :-) Michelle's dear friend, Jen Sandom, took her to that appointment as well as her CT scan. Normally the biopsies take 10 days, but the doctor requested the results stat, so hopefully those will be back in 4 days. The CT scan will take 2 working days to read, so Monday is the day for those results.
Thank you to Kathleen for providing Jack and Michelle with orange juice and fruit today! They were very appreciative of the kind gesture and Jack was glad to have one thing crossed off his "honey do" list!
Waiting for these test results will seem like eternity for Michelle. Pray that she has patience while waiting. She is also unsure what she is hoping for from the results. On the one hand, if there is cancer, than that can be treated and they can stop the dermatomyositis. On the other hand, does one ever pray that they DO have cancer? She is also unsure if she wants to consult with a chiropractor and try alternative methods of treatment.
Thank you for your continued prayers. It is my privilege to update this for Michelle...and I'll be sure to check it for updates (hint, hint, Jack!!) when we are on vacation. Heidi
Thanks and Praise
Michelle and I just want to thank everyone for their help, prayers, meals, daycare, transportation, phone calls, cleaning, blog creation, phone headsets, MP3 players, books, movies, and the list goes on and on. We are truly blessed by the support of our Twin Cities "family" and are deeply grateful!
One other item of praise is that we received word today that Michelle's CK #'s are dropping based on her most recent doctor visit last Friday. They are back down just under 1000 from their high of over 2400. I believe Heidi mentioned earlier what these #'s mean, but for "normal" people, they are supposed to be under 100. So, while the pain hasn't yet gotten better in her arms, shoulders, and hips, we are encouraged that hopefully the pain will soon lessen.
Thanks again to all of you!!!
Jack
One other item of praise is that we received word today that Michelle's CK #'s are dropping based on her most recent doctor visit last Friday. They are back down just under 1000 from their high of over 2400. I believe Heidi mentioned earlier what these #'s mean, but for "normal" people, they are supposed to be under 100. So, while the pain hasn't yet gotten better in her arms, shoulders, and hips, we are encouraged that hopefully the pain will soon lessen.
Thanks again to all of you!!!
Jack
Wednesday, June 4, 2008
More Thanks and Graduation pics
A huge thank you also goes out to Christine for helping Michelle clean house and purge things today!! And to Tara for helping organize Julia and Jaclyn's closets (out with the winter and in with summer clothes)!
We are thankful that Michelle's birthmom, Nancy, will be flying in on Sunday night and staying for a week and a half.
Here are some pictures from Julia's preschool graduation last week. Anyone that knows Michelle, knows how much she LOVES pictures! I was glad to be able to help her by taking these for her, since she couldn't hold a camera!
Love,
We are thankful that Michelle's birthmom, Nancy, will be flying in on Sunday night and staying for a week and a half.
Here are some pictures from Julia's preschool graduation last week. Anyone that knows Michelle, knows how much she LOVES pictures! I was glad to be able to help her by taking these for her, since she couldn't hold a camera!
Love,
Heidi
Just press "View Album" to see all the pictures!
Just press "View Album" to see all the pictures!
Daily Steroids
Starting tomorrow morning, Michelle will start taking daily doses of prednizone (steriods). She will be taking it in pill form. They will gradually decrease the amount so that her body does not become addicted!
Prayers also are needed as she has all of her scans tomorrow! She will have a Mammogram and chest x ray in the morning at the Eagan St. Paul Radiology Clinic. Then in the afternoon she will go for a CT scan in St. Paul. We pray that all of those test results will be negative!
Her legs have felt somewhat better today. She just is not really able to bend her knees.
Thank you to Heather and Christine for stopping by and seeing Michelle today. Michelle said that Jack will just LOVE Heather, because she went through a bunch of stuff in the garage (with Michelle nearby) and either threw in it the garbage (yea!!!) or got it ready for a garage sale. (I guess that deserves a yea too :-)) Michelle and I both have trouble getting rid of things...we need someone like Heather to help us purge every once in a while!
Heather helped Michelle clean out the freezer too, so they do have some room for freezer meals if you would like to provide them with that :-) Another thing that they are running low on is things like fresh fruit and orange juice. Many of you have asked if can help with anything. If either of these are something you would want, please call me (Heidi) or Michelle directly. I know that her afternoon appointment is at 1:00 and will be gone for a couple of hours. I'm not exactly sure what time the morning appointments are.
Thank you again for all your thoughts and prayers.
Love you Michelle!
Heidi
Prayers also are needed as she has all of her scans tomorrow! She will have a Mammogram and chest x ray in the morning at the Eagan St. Paul Radiology Clinic. Then in the afternoon she will go for a CT scan in St. Paul. We pray that all of those test results will be negative!
Her legs have felt somewhat better today. She just is not really able to bend her knees.
Thank you to Heather and Christine for stopping by and seeing Michelle today. Michelle said that Jack will just LOVE Heather, because she went through a bunch of stuff in the garage (with Michelle nearby) and either threw in it the garbage (yea!!!) or got it ready for a garage sale. (I guess that deserves a yea too :-)) Michelle and I both have trouble getting rid of things...we need someone like Heather to help us purge every once in a while!
Heather helped Michelle clean out the freezer too, so they do have some room for freezer meals if you would like to provide them with that :-) Another thing that they are running low on is things like fresh fruit and orange juice. Many of you have asked if can help with anything. If either of these are something you would want, please call me (Heidi) or Michelle directly. I know that her afternoon appointment is at 1:00 and will be gone for a couple of hours. I'm not exactly sure what time the morning appointments are.
Thank you again for all your thoughts and prayers.
Love you Michelle!
Heidi
Other details
Some other things that I thought of while I was reading over the previous posts.
Michelle will be having a CT scan, mammogram, and chest x-ray sometime soon. In some cases dermatomyositis is triggered by cancer. The doctors do not think that Michelle has it, but they will do the tests just to make sure.
She has had some muscle loss already due to the Dermatomyositis. She is currently under total arm muscle rest and was/is supposed to walk and keep her legs moving unless it hurt. So, now that she has some pain in her legs she is supposed to stay seated/laying down as much as possible. Michelle will have physical therapy when her immune system stops attacking her muscles in order to regain muscle tone.
Michelle's body keeps producing the muscle enzyme creatine kinase (CK). Muscles produce this during extreme exercise, but usually turns off. Michelle's muscles keep creating the CK and that is what needs to be stopped.
We are hoping to download some books onto an MP3 player for Michelle. Did you know you can do that for free through the public library? Pretty cool!
The Cleveland Clinic is well known for their treatment of immune diseases. Here
is a link to their description of dermatomyositis.
Michelle will be having a CT scan, mammogram, and chest x-ray sometime soon. In some cases dermatomyositis is triggered by cancer. The doctors do not think that Michelle has it, but they will do the tests just to make sure.
She has had some muscle loss already due to the Dermatomyositis. She is currently under total arm muscle rest and was/is supposed to walk and keep her legs moving unless it hurt. So, now that she has some pain in her legs she is supposed to stay seated/laying down as much as possible. Michelle will have physical therapy when her immune system stops attacking her muscles in order to regain muscle tone.
Michelle's body keeps producing the muscle enzyme creatine kinase (CK). Muscles produce this during extreme exercise, but usually turns off. Michelle's muscles keep creating the CK and that is what needs to be stopped.
We are hoping to download some books onto an MP3 player for Michelle. Did you know you can do that for free through the public library? Pretty cool!
The Cleveland Clinic is well known for their treatment of immune diseases. Here
is a link to their description of dermatomyositis.
Tuesday, June 3, 2008
Prayer Requests
Michelle's pain in her legs has returned somewhat today. She is anxious about this and wants to know why. Her hips are sore as well. Please pray that this pain will subside and that she will feel progress being made. The time and pain involved in all of this is frustrating!
Last Friday she was given another steroid infusion with methotrexate. This is a chemo drug which they have given her that will take 5 - 6 weeks to shut down her immune system . They need to do this in order to stop her immune system from attacking her body. Because of this Michelle will have to be very careful about being around others with illnesses. She also cannot go back to her ways of staying up until 2 or 3 in the morning :-) She is not supposed to have ANY stress...easier said than done!
Jack has been a great help to Michelle---he is getting quite adept at washing and styling her hair! Unfortunately, he does not like to have his picture taken, so I posted what picture I had :-) Sorry Jack! Now he'll have to learn how to post so he can be included too!
Thank you to everyone who has been praying for Michelle. She appreciates all of the prayers!
Last Friday she was given another steroid infusion with methotrexate. This is a chemo drug which they have given her that will take 5 - 6 weeks to shut down her immune system . They need to do this in order to stop her immune system from attacking her body. Because of this Michelle will have to be very careful about being around others with illnesses. She also cannot go back to her ways of staying up until 2 or 3 in the morning :-) She is not supposed to have ANY stress...easier said than done!
Jack has been a great help to Michelle---he is getting quite adept at washing and styling her hair! Unfortunately, he does not like to have his picture taken, so I posted what picture I had :-) Sorry Jack! Now he'll have to learn how to post so he can be included too!
Thank you to everyone who has been praying for Michelle. She appreciates all of the prayers!
What is Dermatomyositis?
We have started this blog to help keep everyone updated on Michelle's progress. We are hopeful that this will be a useful tool to keep prayer needs and praises available to all of you! Michelle is a dear, dear friend and has done so much for so many of us. I, Heidi, and others may type some of the updates for Michelle until she feels better because it hurts her terribly right now to type.
The following is an email that was sent out to our small group which I will post now for all of you. This details much of the information about the disease and how it has progressed and what treatments Michelle is currently receiving.
5/29/08
Please pray for Michelle Brouwer. She has been suffering the last several weeks with severe muscle pain in her arms and legs and also a rash on her back.
The skin rash and muscle soreness has been diagnosed as Dermatomyositis (an autoimmune disease). This is an inflammatory muscle disease which also shows itself by red rashes. (Which started on her back and moved to her fingers and knee). She also has experienced progressive muscle weakness. Because she has also had some labored breathing when she is up and about her Immunologist recommended she come in for immediate steroid infusions. She did this last Tuesday and Wednesday (May 20 and 21).
The pain in her legs has decreased, but she still has severe pain in her arms. Michelle is unable to lift her arms and cannot hold anything without experiencing pain. 80% of people with Dermatomyositis respond to the steroids. We pray that this is the case with Michelle. If this goes into her lungs or heart there can be more serious results.
The doctors have been encouraged because some of the pain has subsided, but they are planning on another steroid infusion either today or tomorrow. The doctors may also include immune suppression drugs into the treatment if necessary. Michelle has been instructed to not do anything that hurts, which means she cannot use her arms at all (the doctors are trying to stop the muscle damage)!
The doctors and Michelle are hopeful that the next week will bring relief to the pain. Julia and Jaclyn have been well cared for this past week and a half by many dear friends. They have now gone to Edgerton with Michelle's parents for over a week.
Pray that this week of rest will enable the medication to work and that the Dermatomyositis will be stopped.
Michelle has also been diagnosed with Lymphocytic Colitis which is an inflammation of the colon. There is an increased level of specialized white blood cells in her colon which leads to chronic diarrhea. This is treatable with medication.
These diagnoses all fall under the autoimmune disease spectrum.
Michelle got a simple flu-like virus a little over a month ago which started her immune system attacking her own body.
Michelle covets your prayers. Her biggest concern at this point is that the steroids will work so that it does not spread to her heart, lungs or throat. Pray for guidance for the doctors as they consider the best treatment plans.
The following is an email that was sent out to our small group which I will post now for all of you. This details much of the information about the disease and how it has progressed and what treatments Michelle is currently receiving.
5/29/08
Please pray for Michelle Brouwer. She has been suffering the last several weeks with severe muscle pain in her arms and legs and also a rash on her back.
The skin rash and muscle soreness has been diagnosed as Dermatomyositis (an autoimmune disease). This is an inflammatory muscle disease which also shows itself by red rashes. (Which started on her back and moved to her fingers and knee). She also has experienced progressive muscle weakness. Because she has also had some labored breathing when she is up and about her Immunologist recommended she come in for immediate steroid infusions. She did this last Tuesday and Wednesday (May 20 and 21).
The pain in her legs has decreased, but she still has severe pain in her arms. Michelle is unable to lift her arms and cannot hold anything without experiencing pain. 80% of people with Dermatomyositis respond to the steroids. We pray that this is the case with Michelle. If this goes into her lungs or heart there can be more serious results.
The doctors have been encouraged because some of the pain has subsided, but they are planning on another steroid infusion either today or tomorrow. The doctors may also include immune suppression drugs into the treatment if necessary. Michelle has been instructed to not do anything that hurts, which means she cannot use her arms at all (the doctors are trying to stop the muscle damage)!
The doctors and Michelle are hopeful that the next week will bring relief to the pain. Julia and Jaclyn have been well cared for this past week and a half by many dear friends. They have now gone to Edgerton with Michelle's parents for over a week.
Pray that this week of rest will enable the medication to work and that the Dermatomyositis will be stopped.
Michelle has also been diagnosed with Lymphocytic Colitis which is an inflammation of the colon. There is an increased level of specialized white blood cells in her colon which leads to chronic diarrhea. This is treatable with medication.
These diagnoses all fall under the autoimmune disease spectrum.
Michelle got a simple flu-like virus a little over a month ago which started her immune system attacking her own body.
Michelle covets your prayers. Her biggest concern at this point is that the steroids will work so that it does not spread to her heart, lungs or throat. Pray for guidance for the doctors as they consider the best treatment plans.
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