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).
Thursday, February 05, 2009
Nell Dorr
A few years ago I discovered the work of photographer Nell Dorr. She was born in 1895 and learned photography from her father, who was also a photographer. She did many images of mothers and children, and I find them really beautiful and moving.
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!
Sunday, November 30, 2008
Is the New Blog Working?
I just wanted to check in with you all about the new blog. I see from sitemeter that many people still stop by here, maybe to get the link to the new blog. No one ever comments on the new blog, so I wanted to make sure it's working. For some reason, you have to click the titles to see the pictures, and almost every post has a picture. If the commenting isn't working or you can't see the blog, leave a comment here and let me know. I know I rarely post anymore, but my counter on the new blog shows that people are stopping by there--just no comments and it makes me wonder.
Wednesday, September 03, 2008
Tuesday, September 02, 2008
Test Results and How I'm Doing
The good news is: normal mammogram, normal chest xray and normal colon cancer screening, AND the insurance company agreed to pay for the really expensive ($500+ per dose, one dose every 2 weeks) Humira medication!!
I just took my 3rd dose of Humira (the first 4 doses are once a week). I am feeling pretty good, but I can't really tell if it is the new medication working to put me into remission or just the prednisone keeping the symptoms at bay. I am a little better, less pain in my muscles and my hands are a lot better, less swelling and burning/tingling (but not totally gone), but the rashes are still the same. I see the rheumatologist on Sept. 10 and am curious what his criteria for improvement are. I think they will be lab test results--muscle enzyme measurements. I have elevated muscle enzymes caused by the inflammation.
The second half of the summer was much better than the
first. June was so stressful and in July I was so ill. Even though
long term prednisone use isn't good for you, it is allowing me to
function and even have some fun with my kids, so I am thankful.
Last week I got the results of a
sophisticated GI profile my dr. ordered. It revealed that I have a
common parasite (dientamoeba fragilis) and elevated yeast/fungi levels. I will probably need to
take antibiotics to kill the parasite, which will only cause
proliferation of the yeast/fungi, so then I will probably go on a
restrictive carb diet to starve the yeast. My dr. wanted me to
read over the test results and we'll discuss our plan of action at my
next visit after he talks it over with the rheumatologist.
I had an EMG last week which revealed extensive carpal tunnel syndrome--my wrist nerves are fried--no myelin, but that grows back. I also have proximal muscle weakness in my shoulders and neck, gluteus and hip muscles. It wasn't completely conclusive as to whether this is being caused by the disease or the steroids, because the steroids are masking some of the inflammatory symptoms, but the fact that I haven't been on the steroids very long and the pattern of muscle weakness--proximal (close to the spine) muscle weakness is a sign of the disease, leads the dr. to believe that it is being caused by the disease, not the steroids. This test really hurt, as opposed to the mammogram, which I was worried about since I haven't had one before and I am still nursing, and it didn't hurt at all.
It's ironic that God has sent me the sumo baby--my biggest by far and
a very fiesty, active kid that has to be wrestled at every clothing
and diaper change--at the same time that He sent me an illness which
gives me weak muscles.
So all in all it's better living through pharmaceuticals. I am just impatient to get back to totally normal again so I can do everything I used to do, like open jars and bottles, lift heavy stuff, lift anything over my head, and exercise. (The rheumatologist told me not to exercise while my muscles are inflamed because it will make it worse). I tire more easily too--I just have to take really good care of myself.
This summer was kind of a loss, but the good thing about it being summer when this happened was that the kids were home and have been really helpful, and Daryl was around more in the summer and he has helped a lot, too. I have also been blessed by having a great regular dr. who has taken great care of me while I waited for the rheumatologist appt.
I just took my 3rd dose of Humira (the first 4 doses are once a week). I am feeling pretty good, but I can't really tell if it is the new medication working to put me into remission or just the prednisone keeping the symptoms at bay. I am a little better, less pain in my muscles and my hands are a lot better, less swelling and burning/tingling (but not totally gone), but the rashes are still the same. I see the rheumatologist on Sept. 10 and am curious what his criteria for improvement are. I think they will be lab test results--muscle enzyme measurements. I have elevated muscle enzymes caused by the inflammation.
The second half of the summer was much better than the
first. June was so stressful and in July I was so ill. Even though
long term prednisone use isn't good for you, it is allowing me to
function and even have some fun with my kids, so I am thankful.
Last week I got the results of a
sophisticated GI profile my dr. ordered. It revealed that I have a
common parasite (dientamoeba fragilis) and elevated yeast/fungi levels. I will probably need to
take antibiotics to kill the parasite, which will only cause
proliferation of the yeast/fungi, so then I will probably go on a
restrictive carb diet to starve the yeast. My dr. wanted me to
read over the test results and we'll discuss our plan of action at my
next visit after he talks it over with the rheumatologist.
I had an EMG last week which revealed extensive carpal tunnel syndrome--my wrist nerves are fried--no myelin, but that grows back. I also have proximal muscle weakness in my shoulders and neck, gluteus and hip muscles. It wasn't completely conclusive as to whether this is being caused by the disease or the steroids, because the steroids are masking some of the inflammatory symptoms, but the fact that I haven't been on the steroids very long and the pattern of muscle weakness--proximal (close to the spine) muscle weakness is a sign of the disease, leads the dr. to believe that it is being caused by the disease, not the steroids. This test really hurt, as opposed to the mammogram, which I was worried about since I haven't had one before and I am still nursing, and it didn't hurt at all.
It's ironic that God has sent me the sumo baby--my biggest by far and
a very fiesty, active kid that has to be wrestled at every clothing
and diaper change--at the same time that He sent me an illness which
gives me weak muscles.
So all in all it's better living through pharmaceuticals. I am just impatient to get back to totally normal again so I can do everything I used to do, like open jars and bottles, lift heavy stuff, lift anything over my head, and exercise. (The rheumatologist told me not to exercise while my muscles are inflamed because it will make it worse). I tire more easily too--I just have to take really good care of myself.
This summer was kind of a loss, but the good thing about it being summer when this happened was that the kids were home and have been really helpful, and Daryl was around more in the summer and he has helped a lot, too. I have also been blessed by having a great regular dr. who has taken great care of me while I waited for the rheumatologist appt.
Wednesday, August 13, 2008
Update on Me
I finally saw a rheumatologist today. He believes that I have something called dermatomyositis, which is an autoimmune illness characterized by muscle weakness and a variety of skin rashes. He started me on a medication called Humira, which is a biologic that is injected, weekly at first then biweekly. It works well for about 70% of the people. For now, I will continue taking prednisone as well, and we will reassess in a month. If it works well, then we will taper off the prednisone. It's a good drug in that it doesn't cause any allergic or immune reactions because it's based on proteins already present in the body--it binds to the problematic antibodies, taking them out of commission without disabling my entire immune system the way some drugs can. I will be more susceptible to respiratory infections, but he said it should be nothing I can't fight off. If it works, then once the illness is in remission, then I will stop taking that medication and take something else that will keep me in remission, and hopefully that will be the END of it. He says it is a potentially serious illness that he is treating aggressively since he doesn't want me to lose ground with my muscles getting progressively weaker, but that he doesn't have any patients with this illness that aren't OK.
The only other problem could be that my insurance won't want to pay for this EXTREMELY expensive medication, or will want me to try methotrexate (a drug used in conjunction with chemo that is more toxic with more side effects and not compatible with breastfeeding) first and prove that it doesn't work. The dr. gave me samples to get me started.
If the Humira doesn't work then he will suggest infusions/transfusions of immunoglobulin, which also works well but is a hassle to get the infusions.
The dr. also ordered a chest xray, a mammogram, and a colon cancer screening test, because some people who present with dermatomyositis also have cancer. He emphasized that this was a small risk in my case (less than 10%) because those people tend to be older men, but he needs to rule it out. He also ordered an EMG to assess my muscle weakness and determine if it is being caused by the steroids or the illness. He thinks it's the illness since I'm not on a really high dose of steroids and I haven't been on them that long. He also put in a standing order for monthly labs to measure my muscle enzymes, which are moderately elevated and have been rising despite the prednisone.
That about covers it. So everybody please pray that I am in the 70% that respond well to Humira!
The only other problem could be that my insurance won't want to pay for this EXTREMELY expensive medication, or will want me to try methotrexate (a drug used in conjunction with chemo that is more toxic with more side effects and not compatible with breastfeeding) first and prove that it doesn't work. The dr. gave me samples to get me started.
If the Humira doesn't work then he will suggest infusions/transfusions of immunoglobulin, which also works well but is a hassle to get the infusions.
The dr. also ordered a chest xray, a mammogram, and a colon cancer screening test, because some people who present with dermatomyositis also have cancer. He emphasized that this was a small risk in my case (less than 10%) because those people tend to be older men, but he needs to rule it out. He also ordered an EMG to assess my muscle weakness and determine if it is being caused by the steroids or the illness. He thinks it's the illness since I'm not on a really high dose of steroids and I haven't been on them that long. He also put in a standing order for monthly labs to measure my muscle enzymes, which are moderately elevated and have been rising despite the prednisone.
That about covers it. So everybody please pray that I am in the 70% that respond well to Humira!
Sunday, July 13, 2008
A Driver!
My oldest turned 16 in June. He got his driver's license that day, and so far has done a fabulous job driving himself and his siblings around as well as running errands for me.
Note the large candlesticks. His harried mother forgot to buy birthday candles.
He is a really special kid, a true delight. I can't believe how the years have flown.
What Next? (Prayers please!)
A little over a month ago I began having what I thought were carpal tunnel symptoms, mild numbness and tingling in both hands. I'd had this during pregnancy, but it went away. Initially, I ignored it, but it rapidly progressed to a lot of pain, particularly in my wrists. I saw a doctor who prescribed a splint and physical therapy on June 19. After a few days, my right hand, which was much worse, began to swell. I thought it was being caused by the splint. The numbness and tingling at night had progressed to severe burning and pain, waking me many, many times at night. Meanwhile, I was feeling very fatigued, but the interrupted sleep combined with the last week of school, 2 birthdays, and Daryl being out of town for 3 weeks in a row, led me to believe that it was being caused by those external circumstances.
The next week I saw my osteopathic physician for manipulation to help with the carpal tunnel. I mentioned my fatigue, along with a rash that I have had on my chest since April, that was small but had suddenly covered my entire chest, and the deep, dark circles that had suddenly appeared under my eyes. He ran a battery of blood tests. Several days later he called to tell me that everything was normal. I am hypothyroid and we both suspected that perhaps my levels had shifted and I was now undermedicated, but that was not the case. I left that morning, June 27, for a vacation in Telluride, CO with my family. I planned to see a neurologist upon my return to find out what I could do about the intense nerve pain I was having, which was still keeping me up at night.
A few days into my trip I got another call from my physician to tell me that he had just received the results of another blood test that took a little longer than the others, for an autoimmune disorder, and it was really high. The test was for antinuclear antibodies (ANA) and it was 2560, speckled pattern. Normal is under 40. I also had mildly elevated CRP and Rheumatoid factor numbers. At this point my right hand was so swollen I couldn't close it at all and it was also very weak. My left hand was also swollen but not as badly. The circles under my eyes were much deeper, and there was now some swelling under my eyes. I had a rough scaly rash on my elbows and numerous bumps, lesions, and calcium deposits on my hands. While the rest of my family enjoyed the great outdoors, mountain biking, hiking and white water rafting, I mainly rested and kept track of the new symptoms that appeared daily. We changed our plane tickets and came home a day early.
I saw my physician the next day, July 9. By this point my eyes were quite swollen and the normal creases that go from the inner eye down the cheek were purple and very deep. My eyelids and the area under my brows had turned a light brown shade. This is known as a heliotrope rash. My physician consulted with a rheumatologist, who told him what additional tests to run on me and suggested he start me on prednisone immediately, and promised to try and get me in his schedule within two weeks.
I dutifully donated my 8 vials of blood.
The prednisone has helped, reducing my symptoms but not eliminating them. It was frightening how quickly this all happened. Hopefully once the new lab results are in (next week) we will have a better idea what the illness is and how to control it. Possible diagnoses are things like rheumatoid arthritis, lupus, scleroderma, dermatomyositis, etc. The prednisone is just a short term solution to stop it in it's tracks. The rheumatologist is supposed be really good, really nice, and is a the father of a large family. I hope he lives up to my expectations!
Food and sunlight and hormonal changes are all known triggers for autoimmune flareups. My only theory at this point is that when we went to Florida in early April and I spent a week baking on the beach, it triggered this. That was when the first symptom, the chest rash, appeared. I have previously had sun poisoning, an allergic reaction to the sun, in tropical climates and that is what I thought it was except that it didn't go away and my skin gradually grew leathery in that spot. After 7 years of living in cloudy Michigan, perhaps that giant blast of sunshine was more than my body, which has previously shown sun sensitivity, could handle.
So if you pray, please pray that this is quickly diagnosed and it is not severe, and manageable. I am thankful that it occurred during the summer when my responsibilities are less and my older children can help more. I have had trouble doing things like changing diapers and snapping baby clothes, opening jars and bottles, clipping my fingernails, cutting food with a knife, etc.
And I'd be interested in hearing the story of anyone who has battled a similar problem.
The next week I saw my osteopathic physician for manipulation to help with the carpal tunnel. I mentioned my fatigue, along with a rash that I have had on my chest since April, that was small but had suddenly covered my entire chest, and the deep, dark circles that had suddenly appeared under my eyes. He ran a battery of blood tests. Several days later he called to tell me that everything was normal. I am hypothyroid and we both suspected that perhaps my levels had shifted and I was now undermedicated, but that was not the case. I left that morning, June 27, for a vacation in Telluride, CO with my family. I planned to see a neurologist upon my return to find out what I could do about the intense nerve pain I was having, which was still keeping me up at night.
A few days into my trip I got another call from my physician to tell me that he had just received the results of another blood test that took a little longer than the others, for an autoimmune disorder, and it was really high. The test was for antinuclear antibodies (ANA) and it was 2560, speckled pattern. Normal is under 40. I also had mildly elevated CRP and Rheumatoid factor numbers. At this point my right hand was so swollen I couldn't close it at all and it was also very weak. My left hand was also swollen but not as badly. The circles under my eyes were much deeper, and there was now some swelling under my eyes. I had a rough scaly rash on my elbows and numerous bumps, lesions, and calcium deposits on my hands. While the rest of my family enjoyed the great outdoors, mountain biking, hiking and white water rafting, I mainly rested and kept track of the new symptoms that appeared daily. We changed our plane tickets and came home a day early.
I saw my physician the next day, July 9. By this point my eyes were quite swollen and the normal creases that go from the inner eye down the cheek were purple and very deep. My eyelids and the area under my brows had turned a light brown shade. This is known as a heliotrope rash. My physician consulted with a rheumatologist, who told him what additional tests to run on me and suggested he start me on prednisone immediately, and promised to try and get me in his schedule within two weeks.
I dutifully donated my 8 vials of blood.
The prednisone has helped, reducing my symptoms but not eliminating them. It was frightening how quickly this all happened. Hopefully once the new lab results are in (next week) we will have a better idea what the illness is and how to control it. Possible diagnoses are things like rheumatoid arthritis, lupus, scleroderma, dermatomyositis, etc. The prednisone is just a short term solution to stop it in it's tracks. The rheumatologist is supposed be really good, really nice, and is a the father of a large family. I hope he lives up to my expectations!
Food and sunlight and hormonal changes are all known triggers for autoimmune flareups. My only theory at this point is that when we went to Florida in early April and I spent a week baking on the beach, it triggered this. That was when the first symptom, the chest rash, appeared. I have previously had sun poisoning, an allergic reaction to the sun, in tropical climates and that is what I thought it was except that it didn't go away and my skin gradually grew leathery in that spot. After 7 years of living in cloudy Michigan, perhaps that giant blast of sunshine was more than my body, which has previously shown sun sensitivity, could handle.
So if you pray, please pray that this is quickly diagnosed and it is not severe, and manageable. I am thankful that it occurred during the summer when my responsibilities are less and my older children can help more. I have had trouble doing things like changing diapers and snapping baby clothes, opening jars and bottles, clipping my fingernails, cutting food with a knife, etc.
And I'd be interested in hearing the story of anyone who has battled a similar problem.
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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 Way6 years ago
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Zootopia is Cute as a Bunny, Sly as a Fox10 years ago
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Cardmaking and Operation Write Home12 years ago
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Week 1 2013/2014 School Year13 years ago
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My latest project14 years ago
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Peek-In-Monday16 years ago
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