Neglect
4 years ago
All of Us
At I's wedding in July 2019. Back row from left: My oldest D (27) and his wife B (27), My 6th K (16), My 3rd L (23), My 5th T (19), and my 7th A (14). Front row from left: My 9th Z (11), My 10th M (9), Me!, My new son-in-law L (23), My 4th I (22), my love D, My 2nd J (25), and my 8th M (11).
Monday, May 10, 2010
Updates
Post surgery update: Although they only removed 7 lbs. (3 of breast and 4 of belly)--I guess since the rest of me is thin and it was targeted weight loss it made a huge difference. I am wearing pants 2 sizes smaller than I was! I can wear normal bras and shop at stores like Victoria's Secret for bras now, and even go braless if I want! It was a painful recovery, and I developed an infection in one of the permanent interior abdominal sutures at about 3 weeks post surgery which made it take longer, (I had to take double strength antibiotics for 14 days and even then the surgeon said I had a 50% chance of it going away and a 50% chance he'd have to go in and remove the suture--but it went away!) but now I feel and look great.
Adoption update--We are tentatively/hopefully going to Africa in late June to get our kids! I wish I could post pictures or more details but I can't--once they are ours I will though!
Illness update--I still receive monthly IVIG treatments which keep it under control, but it is not in remission. Remission is no meds/no symptoms. I just began a new drug last week which will hopefully get me at least into a drug remission, which is no symptoms with drugs. I still have the rashes, and I imagine if I discontinued the IV treatments the muscle weakness would return. This drug is an immune suppressant that they give transplant patients, so it will make me slightly more prone to illness, which will hopefully be offset by the IV treatments which are other people's pooled antibodies.
So please pray for complete remission for me and that our adoptions and adjustments at home afterward go really smoothly!
Adoption update--We are tentatively/hopefully going to Africa in late June to get our kids! I wish I could post pictures or more details but I can't--once they are ours I will though!
Illness update--I still receive monthly IVIG treatments which keep it under control, but it is not in remission. Remission is no meds/no symptoms. I just began a new drug last week which will hopefully get me at least into a drug remission, which is no symptoms with drugs. I still have the rashes, and I imagine if I discontinued the IV treatments the muscle weakness would return. This drug is an immune suppressant that they give transplant patients, so it will make me slightly more prone to illness, which will hopefully be offset by the IV treatments which are other people's pooled antibodies.
So please pray for complete remission for me and that our adoptions and adjustments at home afterward go really smoothly!
Thursday, May 06, 2010
We couldn't be prouder.
This is my oldest child, D, speaking at the National Honor Society Convocation last week. He is President, so he gave the opening speech summarizing the group's astonishing list of service activities. Despite his reluctance, he did a great job!
Friday, April 02, 2010
Prayers Needed
Just as I was feeling almost totally back to normal, my abdominal scar became infected. I didn't know that scars could get infected, but I guess all the healing is not complete on the inside. I am taking antibiotics, and the dr. said I should see improvement in 48 hours, which it has almost been, and no change. It both itches and hurts a lot, and is rather swollen. I'm also extremely fatigued. If it doesn't heal soon, I may not be able to go on spring break with my family!
Consoling the Heart of Jesus
That is the title of a book I have read over Lent that has truly changed my life. Written by a priest, Michael Gaitley, it is based on the teachings of St. Therese of Lisieux and St. Faustina. It teaches all about prayer, about having a trusting relationship with Jesus, what he really wants from us, and how to give that to him, in a way that is clear, easy to understand, and not overwhelming. It has changed my life. I can't recommend this book enough.
Saturday, March 13, 2010
One Week Post-Op
The first 3-4 days post surgery I felt a little better each day. The next 2 days seemed more painful, as though I was going backwards. I actually cried on day 5. My strategy had been to take as little Vicodin as possible, only when I needed it. As I got better, I thought I needed it less, so I was taking less and letting it wear off in between doses. Then I would be in a lot of pain. I was worried the surgeon would tell me to "suck it up". Daryl said, "He will tell you to quit trying to be tough and take more pain medication" which was exactly what he said. He exact words were, "So, I hear you have been tormenting yourself." Apparently the nurse had shared with him what was happening since I had already told her.
Now I am back to alternating Ibuprofen and Vicodin every 3 hours, which works great. Leaves me slighty fuzzy, but not too bad. Hopefully by the 10-14 day mark I can stop using the narcotics, but until then, drugs are my friend!
Now I am back to alternating Ibuprofen and Vicodin every 3 hours, which works great. Leaves me slighty fuzzy, but not too bad. Hopefully by the 10-14 day mark I can stop using the narcotics, but until then, drugs are my friend!
How Many Homes Have You Lived In?
I was just thinking about this and decided to add mine up.
During my childhood I lived in 2 homes.
In college, there were 5.
After getting married there have been 9.
Grand total = 16
Leave a comment and post your total.
During my childhood I lived in 2 homes.
In college, there were 5.
After getting married there have been 9.
Grand total = 16
Leave a comment and post your total.
Saturday, March 06, 2010
Tuesday, March 02, 2010
Don't Cry Because It's Over. Smile Because It Happened.
I am trying to keep the above quote by Dr. Seuss in mind as I traverse the next phase of parenting, but it isn't easy. As senior year for D. draws to a close, and he gets closer and closer to leaving home, I have very carefully avoided thinking about how it will FEEL to have him gone. Now, however, I have been confronted. Spring break is coming, and D. would rather go to a cabin in northern Michigan with his buddies than on a family trip with us. Since he is almost 18 and has always used good judgement, we are allowing him to do that, but I had no idea how sad it would make me feel. I'm not sure which makes me sadder--that he won't be coming with us, or that he doesn't want to.
This is just a prelude to how I will feel next fall, I imagine. Heartbroken.
This is just a prelude to how I will feel next fall, I imagine. Heartbroken.
Friday, February 26, 2010
News
I have 2 news items to report.
The first is that we have been matched with children, a 2 year old girl and a 3 month old baby boy. We will hopefully travel in May to get them (many things are up in the air right now so it is not definite). I can't give any more details or show photos at this time, but we are all very excited!
The second news item is that I have decided to have a breast reduction and abdominoplasty. My chest size has caused me discomfort my entire life, and they are much larger than they used to be, so now that I am done using my breasts for their intended purpose (my baby is weaned!) I am ready to remedy the problem. As for the abdominoplasty--let's just say that carrying 8 full term babies weighing approximately 10 pounds each leaves you with a drooping flap of skin that no amount of exercise will fix. The surgery is scheduled for Mar. 5, 2010. I am nervous and excited! Please keep me in your prayers that the surgery goes smoothly and that I recover easily.
The first is that we have been matched with children, a 2 year old girl and a 3 month old baby boy. We will hopefully travel in May to get them (many things are up in the air right now so it is not definite). I can't give any more details or show photos at this time, but we are all very excited!
The second news item is that I have decided to have a breast reduction and abdominoplasty. My chest size has caused me discomfort my entire life, and they are much larger than they used to be, so now that I am done using my breasts for their intended purpose (my baby is weaned!) I am ready to remedy the problem. As for the abdominoplasty--let's just say that carrying 8 full term babies weighing approximately 10 pounds each leaves you with a drooping flap of skin that no amount of exercise will fix. The surgery is scheduled for Mar. 5, 2010. I am nervous and excited! Please keep me in your prayers that the surgery goes smoothly and that I recover easily.
Monday, January 18, 2010
Your Mothering Style
I love Meyers-Briggs type personality quizzes and this seemed like a good one. Here are my results:
 I'm a "How To" Mother!(Extraverted, Sensing, Thinking, Judging) Organized and comfortable being in charge, I know .how to. get things done, make things happen, and accomplish much on behalf of my children. What's your mothering personality type? Take the MotherStyles quiz at FamilyEducation.com! |
Tuesday, January 05, 2010
Making Progress
Yesterday we got word that USCIS (Dept. of Homeland Security/Immigration) has approved our application to adopt. One step closer! Now we are awaiting our referrals. Once we have them, it will be approximately 2 months until we travel to pick up our children.
Monday, January 04, 2010
Happy New Year 2010!
Dear friends and family,
We hope that 2009 was a good year for all of you, as it was for us. Here are some highlights:
D. (17) is finishing his senior year of high school. He played his final season of varsity football, and then turned his attention to college applications. Thus far, he has applied to the University of Michigan and the University of Arizona. He has been admitted to the University of Michigan and awarded a modest scholarship. He plans to also apply to Stanford, Case Western, and Carnegie Mellon. D. was elected president of the National Honor Society, which is a very active service group at Dexter High School, and he now spends many mornings getting up extra early to attend NHS meetings before school.
J. (15) continues to run, and competed on the cross country team again this fall. She did well, improving her times significantly from last year. She continues to play the flute and march in the marching band. Jasmine works hard at her studies and does well in school. She is also involved in the church youth group, and last summer she went on another National Relief Network service trip. In addition, she began dating this fall. She wins the award as our busiest family member!
L. (14) continues to be a multisport athlete, participating in football and soccer in the fall, basketball in the winter, and track in the spring. He trained to become a soccer referee last summer and is now able to earn some spending money refereeing younger teams' games. He is also an excellent student, and has a constant flow of visiting friends and invitations.
I. (12) began middle school this fall, where she is doing very well. She played volleyball this fall for the first time and really enjoyed it. She plans to play basketball this winter. She continues to play the piano and also has a VERY busy social life.
T. (9) is now in the 4th grade. She is an extremely avid reader. She also participates in a horseback trail riding group where she is learning riding skills and how to care for horses while having a great time going on long rides to fun destinations.
K. (6) began 1st grade this year, and has begun to read! He played soccer for the first time last summer, with his Dad as coach. He continues to be an extremely friendly and inquisitive child.
A. (5) is completing her final year of preschool. She has really blossomed there, becoming more confident and less shy. She took karate lessons this fall and was a natural at it. She knows all of the letters and their sounds, and can read and write many words on her own.
M. (2) is a boy of few words, literally. He has not really begun to talk, but has a "vocabulary" consisting of 3-4 words and many sounds and gestures, which enable him to communicate quite well, and of course he understands everything we say. He continues to be really large for his age (Nickname: Clifford) and to love motorized vehicles more than anything. He calls them all "vroom vrooms" and has been known to stroll through a parking lot patting each car on the hood while sighing "vroom vroom."
Paula has had an excellent year. She began IV immunoglobulin treatments at the beginning of the year, which have kept her dermatomyositis in check. It is not in remission yet, so she continues to get a treatment once a month, but she has been able to wean almost completely off the steroids and her rheumatologist assures her that the disease will eventually go into remission. For now, she is feeling excellent and enjoying her good health.
Daryl continues to work very hard in his dual roles as a Professor at the University of Michigan and the CEO of his company, Neuronexus Technologies. He is also the lead 'sports fan' and went to many games and meets through the year to watch the kids compete. Daryl stays busy around our old/new house, with its myriad landscaping and handyman projects.
The major home project we completed last year was finishing our basement. We converted it from a dim, dusty room with a pool table and foosball table surrounded by cardboard boxes to a well lit, brightly painted teen hangout/kids playroom/exercise area. We built storage closets and bookcases, installed a drop ceiling, lighting and drywall, painted the walls and covered the concrete floor with a combination of carpet and paint. Once it was complete, we allowed the kids to pool their money and buy a Wii, our first and only video game system.
We need the finished basement, because any time that school is not in session, our household slides into nonstop party mode. With the older kids, the party gets started around 9pm when they seem to come alive, and it goes into the night, generally past the time that Daryl and Paula call it a day. The younger kids begin playing early in the morning and it goes on all day from room to room. This year we hosted a Halloween party in which each kid had unlimited invitations for their friends. This resulted in a crowd of 60-70 guests, roving bands of kids of different ages and a traffic jam in our driveway.
This past year we took two family trips. Over spring break we drove to Asheville, NC, where we visited Daryl's brother and sister-in-law, saw the local sights and did some hiking. Then we traveled on to Myrtle Beach, SC, where we enjoyed a few days on the ocean. This past summer we went on a family vacation to Northport, MI, where we spent a week on the beach of Lake Michigan, which was very relaxing. Unfortunately, during both beach vacations we had unseasonably cold air and water temperatures. Luckily, we had invested in the wetsuits you see in the photograph.
Our family made an important decision this year. We have decided to adopt 2 children from the Democratic Republic of Congo. We began the process in August, and at this point are awaiting approval from the United States immigration department, which we anticipate receiving in early January, and awaiting referrals of specific children from our adoption agency. We have requested a 2 year old boy and an infant girl. The most current estimate is that we will probably be able to travel to get our children in Feb. or March 2010. Daryl, D. and J. will be making the trip, which will take about one week. We are all extremely excited and it is very hard to be patient!
We wish all of you a happy and healthy 2010 filled with many blessings!
We hope that 2009 was a good year for all of you, as it was for us. Here are some highlights:
D. (17) is finishing his senior year of high school. He played his final season of varsity football, and then turned his attention to college applications. Thus far, he has applied to the University of Michigan and the University of Arizona. He has been admitted to the University of Michigan and awarded a modest scholarship. He plans to also apply to Stanford, Case Western, and Carnegie Mellon. D. was elected president of the National Honor Society, which is a very active service group at Dexter High School, and he now spends many mornings getting up extra early to attend NHS meetings before school.
J. (15) continues to run, and competed on the cross country team again this fall. She did well, improving her times significantly from last year. She continues to play the flute and march in the marching band. Jasmine works hard at her studies and does well in school. She is also involved in the church youth group, and last summer she went on another National Relief Network service trip. In addition, she began dating this fall. She wins the award as our busiest family member!
L. (14) continues to be a multisport athlete, participating in football and soccer in the fall, basketball in the winter, and track in the spring. He trained to become a soccer referee last summer and is now able to earn some spending money refereeing younger teams' games. He is also an excellent student, and has a constant flow of visiting friends and invitations.
I. (12) began middle school this fall, where she is doing very well. She played volleyball this fall for the first time and really enjoyed it. She plans to play basketball this winter. She continues to play the piano and also has a VERY busy social life.
T. (9) is now in the 4th grade. She is an extremely avid reader. She also participates in a horseback trail riding group where she is learning riding skills and how to care for horses while having a great time going on long rides to fun destinations.
K. (6) began 1st grade this year, and has begun to read! He played soccer for the first time last summer, with his Dad as coach. He continues to be an extremely friendly and inquisitive child.
A. (5) is completing her final year of preschool. She has really blossomed there, becoming more confident and less shy. She took karate lessons this fall and was a natural at it. She knows all of the letters and their sounds, and can read and write many words on her own.
M. (2) is a boy of few words, literally. He has not really begun to talk, but has a "vocabulary" consisting of 3-4 words and many sounds and gestures, which enable him to communicate quite well, and of course he understands everything we say. He continues to be really large for his age (Nickname: Clifford) and to love motorized vehicles more than anything. He calls them all "vroom vrooms" and has been known to stroll through a parking lot patting each car on the hood while sighing "vroom vroom."
Paula has had an excellent year. She began IV immunoglobulin treatments at the beginning of the year, which have kept her dermatomyositis in check. It is not in remission yet, so she continues to get a treatment once a month, but she has been able to wean almost completely off the steroids and her rheumatologist assures her that the disease will eventually go into remission. For now, she is feeling excellent and enjoying her good health.
Daryl continues to work very hard in his dual roles as a Professor at the University of Michigan and the CEO of his company, Neuronexus Technologies. He is also the lead 'sports fan' and went to many games and meets through the year to watch the kids compete. Daryl stays busy around our old/new house, with its myriad landscaping and handyman projects.
The major home project we completed last year was finishing our basement. We converted it from a dim, dusty room with a pool table and foosball table surrounded by cardboard boxes to a well lit, brightly painted teen hangout/kids playroom/exercise area. We built storage closets and bookcases, installed a drop ceiling, lighting and drywall, painted the walls and covered the concrete floor with a combination of carpet and paint. Once it was complete, we allowed the kids to pool their money and buy a Wii, our first and only video game system.
We need the finished basement, because any time that school is not in session, our household slides into nonstop party mode. With the older kids, the party gets started around 9pm when they seem to come alive, and it goes into the night, generally past the time that Daryl and Paula call it a day. The younger kids begin playing early in the morning and it goes on all day from room to room. This year we hosted a Halloween party in which each kid had unlimited invitations for their friends. This resulted in a crowd of 60-70 guests, roving bands of kids of different ages and a traffic jam in our driveway.
This past year we took two family trips. Over spring break we drove to Asheville, NC, where we visited Daryl's brother and sister-in-law, saw the local sights and did some hiking. Then we traveled on to Myrtle Beach, SC, where we enjoyed a few days on the ocean. This past summer we went on a family vacation to Northport, MI, where we spent a week on the beach of Lake Michigan, which was very relaxing. Unfortunately, during both beach vacations we had unseasonably cold air and water temperatures. Luckily, we had invested in the wetsuits you see in the photograph.
Our family made an important decision this year. We have decided to adopt 2 children from the Democratic Republic of Congo. We began the process in August, and at this point are awaiting approval from the United States immigration department, which we anticipate receiving in early January, and awaiting referrals of specific children from our adoption agency. We have requested a 2 year old boy and an infant girl. The most current estimate is that we will probably be able to travel to get our children in Feb. or March 2010. Daryl, D. and J. will be making the trip, which will take about one week. We are all extremely excited and it is very hard to be patient!
We wish all of you a happy and healthy 2010 filled with many blessings!
Peace and Love
This was our New Year's card this year. It had our names but I removed them for privacy.
Sunday, December 20, 2009
Thursday, December 17, 2009
Christmas tree 2009
This was the earliest we ever put up our tree, on Thanksgiving weekend. It was also some of the easiest decorating our house. The kids carried the boxes up from the basement and I went through them, handing out decorations and telling them where to put them. It only took about 2-3 hours to do both the tree and the house. It has been really fun having it all done early to enjoy!
Fancy!
Here are Daryl and I headed out to a black tie event, our first ever. I had never owned an evening gown before this, either.
Saturday, September 26, 2009
More Wild Wrestling
From left: I with A on her back, L with M on his back, cousin M with T on her back.
Jam Pile
One evening there was a lot of wild running and wrestling. We had a cousin and 6 friends that were here, and it was crazy fun!
Here are, from bottom, D, J, I, M, T, and K.
A Ride at the Fair
J. taking M. on a train ride at our church fair. He LOVES vehicles of any kind and she was dying to take him. Of course, he had a great time until it ended....
Beautiful Big Sister
J. remains the favorite older sibling of all the little ones. She is loving, nurturing, creative and fun (when she feels like it--there is that Dr. Jekyll/Mr. Hyde aspect of being 15 that makes her somewhat unpredicatble!)
4th of July
Here I am, wearing a light necklace as a headband prior to the fireworks, trying to be 60sish. Overall, this vacation and the summer in general was such a celebration for me because I felt really good. Last year I didn't even go to the fabulous fireworks in Telluride because I felt too ill.
Sand Dunes
J, A, T, I, K and L is buried in the sand. You can tell how overcast it was in these pictures.
Buried in the Sand
We went to Sleeping Bear sand dunes, hiked a long way to the water, and played in the sand. Here is I (top), A, K, and T.
Sliding Down
Our family vacation was a week on Lake Michigan which began at the end of June and went through July 5. Unfortunately, the weather for 4 out of 7 days was rainy and in the low 60s, then 2 days of sunny and low 70s, and one really nice day! Ugh. We still had a good time, but as you see here, we had to resort to sliding onto the grass, because the water and air were too cold to go swimming!
Water Fun
We bought these inflatables this summer to use on our family vacation and at the family reunion. This is the reunion.
Junior Soccer Player
Sorry this is blurry, but of course little brother M. had to get in on the action!
Coaching Dad
His dad was the coach. K. is on the right as Daryl nudges another player out onto the field. K. loved playing soccer!
D's birthday
D turned 17 on June 5, and we couldn't be prouder of this young man. He is handsome, really nice, helpful and respectul, has a 4.0 gpa, is a talented athlete, and is a leader among his peers (President of National Honor Society).
He is in the center, on the left is his girlfriend M, and on the right is little brother K.
Friday, September 25, 2009
The DRC
Click on the title if you would like to learn more about the DRC and what is happening there.
Our Latest Adventure
We have some big news. We are in the process of adopting 2 children from the Democratic Republic of Congo (formerly Zaire). We made our decision at the beginning of August, and have just completed our home study and are waiting for it to be written up, which will be sometime before October 6. As soon as we have it in our hands, we will send it to USCIS (immigration) to be processed. This will take 2-3 months, and at the end of that process we will be issued visas to bring the children back. During that time, our agency, One World Adoptions, will be matching us with children. We have requested a two year old boy and an infant girl. The adoption will be complete after a court hearing in the DRC. Once that happens, Daryl will travel to the DRC to pick them up. D and J will accompany him. The trip will take approximately one week. I will be staying home with the other children, preparing to welcome our newest family members home!
Our children are SO excited. I can't believe that I will soon be the parent of TEN children! It is exciting to be "expecting" without having to be pregnant. I will undoubtedly miss not having been able to enjoy my children's newborn/infancy,but I believe we have been called to do this.
The last 2 months have been filled with paperwork (filing for adoption is sometimes referred to as the paperwork pregnancy), medical appointments and lab tests for everyone in the family.
My doctor was happy to write a letter stating that my health is good enough to not affect my ability to parent two more children! I am still receiving IVIG infustions, only once every 3 weeks now, and am down to only 3mg of prednisone a day, although I am now tapering it once a month--veeeerrrry slooooowwwllly.
The citizens of the war torn DRC are some of the poorest in Africa. There are thousands of displaced people living in camps, and the violence against them continues. Many flee to the southern part of the country, where the capital, Kinshasa, is located, only to find that there are no better opportunities for them there. It is estimated that 15,000 are living on the streets in Kinshasa. Our children will come from Kinshasa.
Our children are SO excited. I can't believe that I will soon be the parent of TEN children! It is exciting to be "expecting" without having to be pregnant. I will undoubtedly miss not having been able to enjoy my children's newborn/infancy,but I believe we have been called to do this.
The last 2 months have been filled with paperwork (filing for adoption is sometimes referred to as the paperwork pregnancy), medical appointments and lab tests for everyone in the family.
My doctor was happy to write a letter stating that my health is good enough to not affect my ability to parent two more children! I am still receiving IVIG infustions, only once every 3 weeks now, and am down to only 3mg of prednisone a day, although I am now tapering it once a month--veeeerrrry slooooowwwllly.
The citizens of the war torn DRC are some of the poorest in Africa. There are thousands of displaced people living in camps, and the violence against them continues. Many flee to the southern part of the country, where the capital, Kinshasa, is located, only to find that there are no better opportunities for them there. It is estimated that 15,000 are living on the streets in Kinshasa. Our children will come from Kinshasa.
Saturday, August 08, 2009
Good News
Just a health update on me:
Since January I have been receiving IV immunoglobulin treatments once every 2 weeks while I taper off prednisone very slowly. I went to lowering my dose 1 mg every 2 weeks to 1 mg every 3 weeks, and now, at 5mg, I am lowering it 1mg every 4 weeks. That seems painfully slow, but it is working. So far, no big reaction. Each time I lower the dose it's a bigger step for my body to adjust, because 1mg was 1/10th of 10mg, but it is 1/5th of 5mg. Earlier this summer the rheumatologist raised my dose of IVIG slightly to help me over the spot where I had the relapse last time, which was around 7-10 mg of prednisone.
I continue to have mild rashes, but my muscle strength is recovering well. I no longer need physical therapy and have just begun working with a trainer at the local gym designing a program just for my needs. That is not to say that my strength is normal--the muscles that were affected the most are still pretty weak (for example--I am able to lift 3 lbs. in each hand doing shoulder presses above my head--prior to this illness I could do sets of 20 lbs. in this exercise) but they are improving. I am able to run again--I can go 1/4 mile without stopping now, and do a total of about 2.8 miles of a run/walk combination where I run 2/10 of a mile, walk 1/10, alternating.
I saw the rheumatologist last week and he is very pleased with my progress and has said I can slow down the pace of the IVIG treatments to once every 3 weeks. I will soon be starting an experimental treatment called low dose naltrexone which he wants to put in place to help me remain in remission once I am totally off prednisone.
The rheumatologist also told me that this is an illness that generally runs it's course, and his job is to shepherd me through it without too much damage to my body. I told him that I know of people who have had it recur sometime later, and he said that they must have been exposed to whatever triggered it again. Since most people don't know the cause/trigger that isn't that helpful, but I can only hope that once it is gone it will remain gone FOREVER!
So my prayers are being answered! If you have been praying for me, THANK YOU!! And please don't stop!
Since January I have been receiving IV immunoglobulin treatments once every 2 weeks while I taper off prednisone very slowly. I went to lowering my dose 1 mg every 2 weeks to 1 mg every 3 weeks, and now, at 5mg, I am lowering it 1mg every 4 weeks. That seems painfully slow, but it is working. So far, no big reaction. Each time I lower the dose it's a bigger step for my body to adjust, because 1mg was 1/10th of 10mg, but it is 1/5th of 5mg. Earlier this summer the rheumatologist raised my dose of IVIG slightly to help me over the spot where I had the relapse last time, which was around 7-10 mg of prednisone.
I continue to have mild rashes, but my muscle strength is recovering well. I no longer need physical therapy and have just begun working with a trainer at the local gym designing a program just for my needs. That is not to say that my strength is normal--the muscles that were affected the most are still pretty weak (for example--I am able to lift 3 lbs. in each hand doing shoulder presses above my head--prior to this illness I could do sets of 20 lbs. in this exercise) but they are improving. I am able to run again--I can go 1/4 mile without stopping now, and do a total of about 2.8 miles of a run/walk combination where I run 2/10 of a mile, walk 1/10, alternating.
I saw the rheumatologist last week and he is very pleased with my progress and has said I can slow down the pace of the IVIG treatments to once every 3 weeks. I will soon be starting an experimental treatment called low dose naltrexone which he wants to put in place to help me remain in remission once I am totally off prednisone.
The rheumatologist also told me that this is an illness that generally runs it's course, and his job is to shepherd me through it without too much damage to my body. I told him that I know of people who have had it recur sometime later, and he said that they must have been exposed to whatever triggered it again. Since most people don't know the cause/trigger that isn't that helpful, but I can only hope that once it is gone it will remain gone FOREVER!
So my prayers are being answered! If you have been praying for me, THANK YOU!! And please don't stop!
Tuesday, June 02, 2009
Zipperhead
Yesterday I rushed off to a morning appointment with the rheumatologist. I was pleased that he spent lots of time with me, answered every question I had about all of the recent bloodwork I've had done, and all of the reading I've been doing on less common alternative/"fad" treatments, even browsed through a paper I'd printed off from a medical journal with a new theory in it. Bottom line about my condition at this moment: Since my rashes have been slowly increasing and my muscles have been getting sorer over the past few weeks, we decided that it would be unwise to decrease the frequency of my IV antibody infusions AND keep tapering the prednisone. He said it was up to me which one to reduce, so I chose the prednisone, since although the antibody treatments are inconvenient, they have no negative effects on my body. (I recently discovered that after almost a year of taking steroids with seemingly no side effects, I am now beginning to have some--thinning and receding hair, and zero production of testosterone and dhea, critical hormones. I'm taking supplements of those hormones now). So I will continue tapering the prednisone, albeit a little more slowly, reducing the dose every 3-4 weeks instead of every 2, and continue the treatments every 2 weeks but at a slightly higher dose (which means I'll sit there an additional 45 minutes).
Next I ran a few errands, then returned home and took on a huge project--cleaning T. and I's room. It was messier than anything I've ever seen. The floor was literally ankle deep in clothing and garbage--crumpled papers, candy wrappers, you name it. Overlaying all of that was about 10 balls of yarn, half unrolled and tangled together forming a spiderweb around the room. Every other surface in the room was covered as well. I neared completion shortly after I. returned home from school. Instead of being appreciative, she was upset that I'd cleaned her room, although I had been warning them that this would happen for several weeks. After arguing with her, I carried a large bag of trash and a pair of razor sharp kitchen scissors down the stairs. When I got to the bottom of the stairs, I twisted my ankle on the pair of shoes left there by L. and fell, hitting my head on a large cedar post at the foot of the stairs. Luckily I was not impaled by the scissors, but did give myself, as the ER dr. described it, a "closed head injury."
I now have 6 staples in the back of my head, which I will have for a week. I received a tetanus shot and a CT scan. Thankfully, I do not have a concussion. I am also grateful that I did not need to have the hair shaved around the cut, since I am already having hair issues!
My next treatment is tomorrow and I am actually glad, so that I can have a restful day. The ER dr. told me to take it easy and not lift anything heavy, LOL. I have a 35 lb. toddler!
Next I ran a few errands, then returned home and took on a huge project--cleaning T. and I's room. It was messier than anything I've ever seen. The floor was literally ankle deep in clothing and garbage--crumpled papers, candy wrappers, you name it. Overlaying all of that was about 10 balls of yarn, half unrolled and tangled together forming a spiderweb around the room. Every other surface in the room was covered as well. I neared completion shortly after I. returned home from school. Instead of being appreciative, she was upset that I'd cleaned her room, although I had been warning them that this would happen for several weeks. After arguing with her, I carried a large bag of trash and a pair of razor sharp kitchen scissors down the stairs. When I got to the bottom of the stairs, I twisted my ankle on the pair of shoes left there by L. and fell, hitting my head on a large cedar post at the foot of the stairs. Luckily I was not impaled by the scissors, but did give myself, as the ER dr. described it, a "closed head injury."
I now have 6 staples in the back of my head, which I will have for a week. I received a tetanus shot and a CT scan. Thankfully, I do not have a concussion. I am also grateful that I did not need to have the hair shaved around the cut, since I am already having hair issues!
My next treatment is tomorrow and I am actually glad, so that I can have a restful day. The ER dr. told me to take it easy and not lift anything heavy, LOL. I have a 35 lb. toddler!
Sunday, May 17, 2009
Silly sun gear
Since the sun seems to exacerbate my rashes, here I am with my hat and sunglasses, fully sunscreened. At least this hat is light, has built in spf, a string to keep it from blowing away, and is comfortable. Last year I had a straw hat that was hot, tight, heavy and blew off my head easily.
Cutest Baby on the Beach
M. loved the beach. I bought everyone a wetsuit since we knew the water would be cold and the air wouldn't be all that hot. They turned out to be useful since we had unseasonably cold weather.
Ready to parasail!
We also visited Myrtle Beach during spring break, and I did something I've always wanted to, parasail! Here are D., L, me and J. waiting our turn.
At the Top
Here we all are at the top of the Chimney Rock trail. Front row: T., I., K., and A.
Back row: Paula, D., L., J., Daryl and M. in the backpack.
At the Falls
We drove down to Asheville, NC for spring break. This is J., L. and D. at a waterfall near Chimney Rock.
Prom 2009
We hosted a before prom photo shoot at our house, as well as an after the prom party. Aren't these kids beautiful? Not all of them attended the party. It was just 3 couples, and the other 2 girls (not D's date) had to be home earlier because they were sophomores. After they left, it was 3 guys and 1 girl!
Another Health Update
Boy, it's been a long time since I've blogged! I've meant to, but somehow...
I have been feeling really well. I am still doing the IVIG treatments once every two weeks and they still seem to be working. I am still doing PT and am slowly regaining strength. I have been very active, and very happy. I am back down to 9mg prednisone daily, and start on 8mg tomorrow. I am nervous about this because that is the level at which the really bad rash appeared last time. I have had some minor spots of rash here and there as I have tapered, and some areas which just never went away, like on the backs of my hands and my elbows. To me, this means the disease is still active. If it were not, then nothing would happen as I tapered the prednisone. I am worried that if I discontinue the treatments entirely, the disease will come roaring back. Only time will tell. The plan is that I will reduce the frequency of the treatments to once a month in June.
Meanwhile, there is a lot of complicated medical stuff that I have been researching related to possible causes/cures/treatments that I want to discuss in detail with the rheumatologist at my next appointment.
Medical appointments and taking care of myself (PT, IVIG treatments, massage, acupuncture, rheumatologist, exercising regularly) still comprise a half time job. It is good to focus on myself, I guess, and I know that I am lucky that I can make the time and can afford the complementary medicine as well as the traditional.
Please keep me in your prayers as I continue to taper the prednisone.
I have been feeling really well. I am still doing the IVIG treatments once every two weeks and they still seem to be working. I am still doing PT and am slowly regaining strength. I have been very active, and very happy. I am back down to 9mg prednisone daily, and start on 8mg tomorrow. I am nervous about this because that is the level at which the really bad rash appeared last time. I have had some minor spots of rash here and there as I have tapered, and some areas which just never went away, like on the backs of my hands and my elbows. To me, this means the disease is still active. If it were not, then nothing would happen as I tapered the prednisone. I am worried that if I discontinue the treatments entirely, the disease will come roaring back. Only time will tell. The plan is that I will reduce the frequency of the treatments to once a month in June.
Meanwhile, there is a lot of complicated medical stuff that I have been researching related to possible causes/cures/treatments that I want to discuss in detail with the rheumatologist at my next appointment.
Medical appointments and taking care of myself (PT, IVIG treatments, massage, acupuncture, rheumatologist, exercising regularly) still comprise a half time job. It is good to focus on myself, I guess, and I know that I am lucky that I can make the time and can afford the complementary medicine as well as the traditional.
Please keep me in your prayers as I continue to taper the prednisone.
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About Me
- Paula
- SE Michigan, United States
- Mother to 10 fabulous kids, ages 9 to 27 years! Mother-in-law to 2 more awesome young adults! Married for 32 years to my best friend.
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