From left: L., K., D. and M. is on D's lap.
Neglect
2 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).
Sunday, January 18, 2009
Saturday, January 17, 2009
Health Update
Here is a more detailed version of what happened than what I put in the New Year's letter. Hope it explains why I don't post very often these days.
Well, here's the news...I've had a setback.
I was taking Humira, which was supposed to be putting my illness, dermatomyositis, into remission, along with prednisone to control the symptoms. I was tapering the prednisone 1mg per week.
In early Nov. I began to have some puffiness around my eyes and small rash spots appeared. I called the rheumatologist and he said that was normal when tapering prednisone--my body was "complaining" about the lower dose but that I'd get used to it. The rash itched, but I put cortisone cream on it and that kept it from bothering me too much. When I lowered the dose from 8 to 7 mg on the day after Thanksgiving, the rash went wild and spread all over the sides of my neck, my chest, breast, armpits, abdomen and hips. It became very itchy, red and raised like poison ivy, and the cortisone cream no longer helped. Whenever i got warm, the rash got worse, and it also made me feel really hot--the rash radiated heat like a sunburn--so it was a cycle. My hands started to swell a little too. I called rheumatologist and he had me raise the prednisone dose to 8 mg and then to 10mg, neither of which helped.
I saw the rheumatologist on Dec. 15 and learned that my muscle enzymes were elevated again as well. He had me take a bigger dose of prednisone again--3 days of 40mg, then 30 mg until today, when I can go down to 20, then start tapering 1 mg per week again. Based on my symptoms and muscle enzymes he said that the Humira is either no longer working or never really worked but that was being masked by the prednisone.
Today I am beginning a new treatment--IV infusions of immunoglobulin, which is pooled antibodies from other people. The good thing about this treatment is it is more proven effective--it works for 90% of people and my dr. has never had it not work. The other good thing is that since it is pooled antibodies from other people, instead of being immunosupressed I will have a better working immune system. The bad thing is that initially I will take it weekly for 4 weeks, then go to every other week, and eventually monthly, and it takes 5 hours to infuse it. It is also very expensive, but luckily my insurance company agreed to pay for it.
I am also taking big doses of the antihistamine Allegra to help with the rash, which is FINALLY subsiding.
Lastly, I read about an alternative treatment with low dose antibiotics based on the theory that certain autoimmune illnesses, including mine, are caused by a low level infection with mycoplasma, which causes walking pneumonia. Interestingly, 2 of my kids had mycoplasma pneumonia in late Jan. 2008 and my first symptom appeared in early April. My dr. is willing to try this at the same time as the other treatments.
Although I look normal, and most people don't realize that I am ill, this illness has made my every day life so much more difficult and physically exhausting. To give you a few examples: I have lost range of motion of my arms, so I can no longer undo or do my bra behind me--I put it on in front and twist it around. I also struggle to get my second arm into a jacket sleeve. Because my arms are weak I have trouble pulling shirts over my head. Recently I was in Kohl's and tried on 4 sweaters. I couldn't get the last one off because my arms were worn out after taking off the first 3. After I waited a couple of minutes I was able to, but I was really panicked for a minute or 2--I didn't want to have to ask a stranger for help.
My leg muscles are weak and stiff, so it's hard to crouch down or get up off the floor. In general I am more awkward and clumsy--I drop things all the time with my numb hands and I fall more easily and have more trouble catching myself and getting back up, so I just feel more cautious and fragile and OLD. It is a hard adjustment since I have always been physically fit and very active and strong. My dr. had me discontinue the physical therapy until my muscle enzymes return to normal again because I can damage my muscles more by exercising them while they are inflamed. That was frustrating since I am so eager to get my strength back!
The numb hands also continue to make zippers and buttons and opening wrappers of packages or bottles and jars very difficult. So I am loving the winter coat season with young children!
Taking care of M. is by far the biggest problem. At 12 months he weighs 29 lbs. and is 33" tall--literally as big or bigger than many of my kids were at age 2! It often takes me 2 tries to lift him off the floor, and it is a struggle to lift him in and out of the highchair, carseat, shopping cart. He's not old enough yet to be managed or directed--if he walks he won't hold my hand or walk in the direction I want, sits down, etc. He is also by far my most rambunctious toddler. and although he is happy and easygoing, he never stops for a second--he is a whirlwind of activity. Despite babyproofing efforts, and with the "help" of my 4 and 5yos , there is always something he shouldn't have or do available. So it's exhausting keeping an eye on him. He's fast and alert--the instant the gate is left open he's up the stairs in a flash, or out the door to the outside or garage, etc. He doesn't like toys much, and knows how to pry the backs off of all the remotes in the house and get the batteries out.
NEW UPDATE--As of mid Jan. 2009 I have received 3 treatments. I am feeling really good due to the increased dose of prednisone, and my labs were normal BEFORE the first IVIG treatment. I have my last scheduled treatment next Tues. and I haven't heard from the rheumatologist about whether or not he will want me to continue and how frequently. I am wondering how he will tell if the treatment is working, since the prednisone alone created a lot of improvement. I am currently at 19mg per day, tapering 1 mg per week. I didn't start to really have noticeable symptoms until I hit 10mg last time, which will be several months from now.
The rash is 95% gone, although I still have some itching, and I have discontinued the antihistamines. I look great, because the prednisone removed all the swelling around my eyes. It also gives me lots of energy which is really nice.
Please pray that this new treatment works and I am cured!
Well, here's the news...I've had a setback.
I was taking Humira, which was supposed to be putting my illness, dermatomyositis, into remission, along with prednisone to control the symptoms. I was tapering the prednisone 1mg per week.
In early Nov. I began to have some puffiness around my eyes and small rash spots appeared. I called the rheumatologist and he said that was normal when tapering prednisone--my body was "complaining" about the lower dose but that I'd get used to it. The rash itched, but I put cortisone cream on it and that kept it from bothering me too much. When I lowered the dose from 8 to 7 mg on the day after Thanksgiving, the rash went wild and spread all over the sides of my neck, my chest, breast, armpits, abdomen and hips. It became very itchy, red and raised like poison ivy, and the cortisone cream no longer helped. Whenever i got warm, the rash got worse, and it also made me feel really hot--the rash radiated heat like a sunburn--so it was a cycle. My hands started to swell a little too. I called rheumatologist and he had me raise the prednisone dose to 8 mg and then to 10mg, neither of which helped.
I saw the rheumatologist on Dec. 15 and learned that my muscle enzymes were elevated again as well. He had me take a bigger dose of prednisone again--3 days of 40mg, then 30 mg until today, when I can go down to 20, then start tapering 1 mg per week again. Based on my symptoms and muscle enzymes he said that the Humira is either no longer working or never really worked but that was being masked by the prednisone.
Today I am beginning a new treatment--IV infusions of immunoglobulin, which is pooled antibodies from other people. The good thing about this treatment is it is more proven effective--it works for 90% of people and my dr. has never had it not work. The other good thing is that since it is pooled antibodies from other people, instead of being immunosupressed I will have a better working immune system. The bad thing is that initially I will take it weekly for 4 weeks, then go to every other week, and eventually monthly, and it takes 5 hours to infuse it. It is also very expensive, but luckily my insurance company agreed to pay for it.
I am also taking big doses of the antihistamine Allegra to help with the rash, which is FINALLY subsiding.
Lastly, I read about an alternative treatment with low dose antibiotics based on the theory that certain autoimmune illnesses, including mine, are caused by a low level infection with mycoplasma, which causes walking pneumonia. Interestingly, 2 of my kids had mycoplasma pneumonia in late Jan. 2008 and my first symptom appeared in early April. My dr. is willing to try this at the same time as the other treatments.
Although I look normal, and most people don't realize that I am ill, this illness has made my every day life so much more difficult and physically exhausting. To give you a few examples: I have lost range of motion of my arms, so I can no longer undo or do my bra behind me--I put it on in front and twist it around. I also struggle to get my second arm into a jacket sleeve. Because my arms are weak I have trouble pulling shirts over my head. Recently I was in Kohl's and tried on 4 sweaters. I couldn't get the last one off because my arms were worn out after taking off the first 3. After I waited a couple of minutes I was able to, but I was really panicked for a minute or 2--I didn't want to have to ask a stranger for help.
My leg muscles are weak and stiff, so it's hard to crouch down or get up off the floor. In general I am more awkward and clumsy--I drop things all the time with my numb hands and I fall more easily and have more trouble catching myself and getting back up, so I just feel more cautious and fragile and OLD. It is a hard adjustment since I have always been physically fit and very active and strong. My dr. had me discontinue the physical therapy until my muscle enzymes return to normal again because I can damage my muscles more by exercising them while they are inflamed. That was frustrating since I am so eager to get my strength back!
The numb hands also continue to make zippers and buttons and opening wrappers of packages or bottles and jars very difficult. So I am loving the winter coat season with young children!
Taking care of M. is by far the biggest problem. At 12 months he weighs 29 lbs. and is 33" tall--literally as big or bigger than many of my kids were at age 2! It often takes me 2 tries to lift him off the floor, and it is a struggle to lift him in and out of the highchair, carseat, shopping cart. He's not old enough yet to be managed or directed--if he walks he won't hold my hand or walk in the direction I want, sits down, etc. He is also by far my most rambunctious toddler. and although he is happy and easygoing, he never stops for a second--he is a whirlwind of activity. Despite babyproofing efforts, and with the "help" of my 4 and 5yos , there is always something he shouldn't have or do available. So it's exhausting keeping an eye on him. He's fast and alert--the instant the gate is left open he's up the stairs in a flash, or out the door to the outside or garage, etc. He doesn't like toys much, and knows how to pry the backs off of all the remotes in the house and get the batteries out.
NEW UPDATE--As of mid Jan. 2009 I have received 3 treatments. I am feeling really good due to the increased dose of prednisone, and my labs were normal BEFORE the first IVIG treatment. I have my last scheduled treatment next Tues. and I haven't heard from the rheumatologist about whether or not he will want me to continue and how frequently. I am wondering how he will tell if the treatment is working, since the prednisone alone created a lot of improvement. I am currently at 19mg per day, tapering 1 mg per week. I didn't start to really have noticeable symptoms until I hit 10mg last time, which will be several months from now.
The rash is 95% gone, although I still have some itching, and I have discontinued the antihistamines. I look great, because the prednisone removed all the swelling around my eyes. It also gives me lots of energy which is really nice.
Please pray that this new treatment works and I am cured!
New Year's 2009
Dear Friends and Family,
Here is our yearly family synopsis:
2008 was a year of travel for us. We visited Disneyworld for the first time for a long weekend in January, which was a fun but tiring trip. In April we went back to Florida for spring break, staying on North Captiva Island, a tiny island that doesn't allow any vehicles, where we rested and rejuvenated on the beach. In June we went to Telluride, Colorado, where we rented a house with our dear friends the XXXXX's and spent a week taking advantage of the hiking, mountain biking, whitewater rafting, and scenery in the area.
D., 16, played basketball last winter and ran track in the spring. The biggest event for him during the past year by far was getting his driver's license in June, which enabled him to work this summer for Daryl's company and to begin dating. During the summer he also went on a volunteer service trip with the National Relief Network, organized by our church, to Parkersburg, Iowa to do post tornado cleanup and on a hiking trip with friends to the top of Mt. Whitney in CA (the tallest mountain in the continental United States). This fall he was a starting outside linebacker on the varsity football team, making 67 tackles during the season, earning his varsity letter and all-conference honorable mention.
J., 14, ran track again last spring. She also volunteered for the National Relief Network service trip to Iowa last summer. She attended marching band and cross country camps last summer as well, which prepared her to run on the cross country team and march in the marching band this fall. The first semester of her freshman year of high school was a busy one! In September J. received the sacrament of Confirmation in the Catholic Church, which was a proud moment for all of us.
L., now 13, (we have 3 teens now!) continues to play soccer, his first love, and played football this fall and basketball in the early winter as well. He has also continued playing the clarinet. Ever the social butterfly, he is now beginning to get phone calls from girls and receive invitations to coed get togethers. He began middle school this fall and is really enjoying it.
I., 11, continues to play both clarinet and piano. She enjoys arts and crafts and ceramics as well. Always a fashionista, she spends a lot of time "shopping" on the internet and selecting just the right outfit to wear to school the next day.
T., 8, has found her niche with a horseback trail riding group. She loves the riding and has made some new friends in the group as well. She is in the 3rd grade now and really blossoming. T. experienced the sacrament of First Eucharist in April
K., 5, began Kindergarten this fall. He is attending a private program run by the preschool that A. attends. We were able to select the days he attends so that the two of them could spend more time together than would have been possible if he had attended the daily afternoon kindergarten he was assigned at the public school and A. attended preschool 3 mornings a week. They are the best of friends (and, at times, worst of enemies!) so this was important for us. He also enjoys a smaller class size in the private school. He is extremely curious and clever, and loves to learn. Learning to read is opening up a whole new world for him.
A., 4, is somewhat shy and had a hard time adjusting to the new preschool at first, but is really enjoying it now. Not to be left behind by K., she knows all of the letters and most of their sounds. She loves to draw and write and can write anything if you help her spell it.
M., 1, is sometimes known as Babyzilla. He is extremely active and rambunctious, and prefers making messes and getting into things around the house to playing with toys. He is by far our busiest toddler, as well as our largest, weighing in at 29 lbs. and measuring 33" tall at a year old.
All of the kids continue to do very well in school, working hard and enjoying academic success.
Daryl completed his year of sabbatical at the University at the end of August, and is back to a full teaching and research load. He continues to direct a research center at Michigan. He also continues on as CEO of his company, which is doing well, having formed a partnership with a large corporation during the past year and grown in revenue and people.
Paula had the most difficult year of any family member. In June she developed an autoimmune illness called dermatomyositis, which is characterized by a variety of rashes and skin disorders and muscle weakness. The cause of the illness is unknown, although there are many theories implicating parasites, bacteria, viruses and intense sun exposure, any of which might trigger the immune system to begin overreacting and attacking the body. Initially she had a lot of fatigue, hand numbness, tingling and swelling, and joint pain, as well as muscle weakness in her shoulders and hips. These symptoms made it difficult to do simple tasks like opening bottles and jars, doing buttons, zippers and snaps, etc. It has also been very difficult to lift and care for M., since he is so heavy to lift in and out of the carseat, highchair and stroller, and resists every diaper and clothing change. She was lucky to be diagnosed quickly, and began taking steroids to control the symptoms and was treated with a somewhat experimental drug called Humira from Aug.-Nov. while slowly tapering the steroids. The hope was that the Humira would put the disease into remission, but as the steroid dose got lower the symptoms returned and lab results confirmed that the disease was still active. This week she begins a new treatment, IV immunoglobulin, which has more proven success (90%) with dermatomyositis. The disadvantage to this treatment is that it takes 4-5 hours to receive an IV infusion of the medication, which she will receive weekly for the first month, and hopefully less frequently as time goes on, while tapering the steroids once again. She plans to use the time spent receiving the treatments to 1) address these cards! 2) read and 3) catch up on photo albums. If you think of it, please pray that the new treatment is successful!
We hope that 2008 was a good year for all of you, and send you our wishes for a happy and healthy 2009!
Here is our yearly family synopsis:
2008 was a year of travel for us. We visited Disneyworld for the first time for a long weekend in January, which was a fun but tiring trip. In April we went back to Florida for spring break, staying on North Captiva Island, a tiny island that doesn't allow any vehicles, where we rested and rejuvenated on the beach. In June we went to Telluride, Colorado, where we rented a house with our dear friends the XXXXX's and spent a week taking advantage of the hiking, mountain biking, whitewater rafting, and scenery in the area.
D., 16, played basketball last winter and ran track in the spring. The biggest event for him during the past year by far was getting his driver's license in June, which enabled him to work this summer for Daryl's company and to begin dating. During the summer he also went on a volunteer service trip with the National Relief Network, organized by our church, to Parkersburg, Iowa to do post tornado cleanup and on a hiking trip with friends to the top of Mt. Whitney in CA (the tallest mountain in the continental United States). This fall he was a starting outside linebacker on the varsity football team, making 67 tackles during the season, earning his varsity letter and all-conference honorable mention.
J., 14, ran track again last spring. She also volunteered for the National Relief Network service trip to Iowa last summer. She attended marching band and cross country camps last summer as well, which prepared her to run on the cross country team and march in the marching band this fall. The first semester of her freshman year of high school was a busy one! In September J. received the sacrament of Confirmation in the Catholic Church, which was a proud moment for all of us.
L., now 13, (we have 3 teens now!) continues to play soccer, his first love, and played football this fall and basketball in the early winter as well. He has also continued playing the clarinet. Ever the social butterfly, he is now beginning to get phone calls from girls and receive invitations to coed get togethers. He began middle school this fall and is really enjoying it.
I., 11, continues to play both clarinet and piano. She enjoys arts and crafts and ceramics as well. Always a fashionista, she spends a lot of time "shopping" on the internet and selecting just the right outfit to wear to school the next day.
T., 8, has found her niche with a horseback trail riding group. She loves the riding and has made some new friends in the group as well. She is in the 3rd grade now and really blossoming. T. experienced the sacrament of First Eucharist in April
K., 5, began Kindergarten this fall. He is attending a private program run by the preschool that A. attends. We were able to select the days he attends so that the two of them could spend more time together than would have been possible if he had attended the daily afternoon kindergarten he was assigned at the public school and A. attended preschool 3 mornings a week. They are the best of friends (and, at times, worst of enemies!) so this was important for us. He also enjoys a smaller class size in the private school. He is extremely curious and clever, and loves to learn. Learning to read is opening up a whole new world for him.
A., 4, is somewhat shy and had a hard time adjusting to the new preschool at first, but is really enjoying it now. Not to be left behind by K., she knows all of the letters and most of their sounds. She loves to draw and write and can write anything if you help her spell it.
M., 1, is sometimes known as Babyzilla. He is extremely active and rambunctious, and prefers making messes and getting into things around the house to playing with toys. He is by far our busiest toddler, as well as our largest, weighing in at 29 lbs. and measuring 33" tall at a year old.
All of the kids continue to do very well in school, working hard and enjoying academic success.
Daryl completed his year of sabbatical at the University at the end of August, and is back to a full teaching and research load. He continues to direct a research center at Michigan. He also continues on as CEO of his company, which is doing well, having formed a partnership with a large corporation during the past year and grown in revenue and people.
Paula had the most difficult year of any family member. In June she developed an autoimmune illness called dermatomyositis, which is characterized by a variety of rashes and skin disorders and muscle weakness. The cause of the illness is unknown, although there are many theories implicating parasites, bacteria, viruses and intense sun exposure, any of which might trigger the immune system to begin overreacting and attacking the body. Initially she had a lot of fatigue, hand numbness, tingling and swelling, and joint pain, as well as muscle weakness in her shoulders and hips. These symptoms made it difficult to do simple tasks like opening bottles and jars, doing buttons, zippers and snaps, etc. It has also been very difficult to lift and care for M., since he is so heavy to lift in and out of the carseat, highchair and stroller, and resists every diaper and clothing change. She was lucky to be diagnosed quickly, and began taking steroids to control the symptoms and was treated with a somewhat experimental drug called Humira from Aug.-Nov. while slowly tapering the steroids. The hope was that the Humira would put the disease into remission, but as the steroid dose got lower the symptoms returned and lab results confirmed that the disease was still active. This week she begins a new treatment, IV immunoglobulin, which has more proven success (90%) with dermatomyositis. The disadvantage to this treatment is that it takes 4-5 hours to receive an IV infusion of the medication, which she will receive weekly for the first month, and hopefully less frequently as time goes on, while tapering the steroids once again. She plans to use the time spent receiving the treatments to 1) address these cards! 2) read and 3) catch up on photo albums. If you think of it, please pray that the new treatment is successful!
We hope that 2008 was a good year for all of you, and send you our wishes for a happy and healthy 2009!
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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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God Will Make A Way5 years ago
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Zootopia is Cute as a Bunny, Sly as a Fox8 years ago
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Week 1 2013/2014 School Year11 years ago
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My latest project12 years ago
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