Thursday, August 9, 2012
Blogging from Home?
Are you kidding me?
I don't even have a desk in this house. I am sharing a desk with everyone. Time to buy some furniture!
Somehow over the course of the week acting as a case manager for the "Deanna Doolittle Project" let out the secret that I had come out of retirement.
I can only handle 10 cases at once....nearing my limit!
So, tomorrow at 8 am I have child care set up so I can be in the call to make a treatment plan. Thats the easiest thing to write if you have done all the reading.
Keeping up with the reading is the other half.
Showing up is the first.
Phones count!
TTYL
XO
ALJ
I don't even have a desk in this house. I am sharing a desk with everyone. Time to buy some furniture!
Somehow over the course of the week acting as a case manager for the "Deanna Doolittle Project" let out the secret that I had come out of retirement.
I can only handle 10 cases at once....nearing my limit!
So, tomorrow at 8 am I have child care set up so I can be in the call to make a treatment plan. Thats the easiest thing to write if you have done all the reading.
Keeping up with the reading is the other half.
Showing up is the first.
Phones count!
TTYL
XO
ALJ
Deanna's Tear Jerker
This blog is seriously down. Deanna Doolittle made me cry this morning with a moving blog she wrote. She sent it to me on facebook private message. I have no idea how to post it.
We need a myalgia mommies administrator who can keep up with multiple social media platforms!!
Sorry!
Hope you are on Facebook?
Cheers,
ALJ
We need a myalgia mommies administrator who can keep up with multiple social media platforms!!
Sorry!
Hope you are on Facebook?
Cheers,
Sunday, August 5, 2012
Message from Deanna
myalgiamommiesblogspot.com
Well, that blog has started somewhat of a life of its own and the women who are part of it all have their personal stories, including me. My friend, who is simply wonderful, has offered to do some documentary photos and then once I reunited with my children is gracious enough to go a family photo shoot. Karen Gilbrande (i i am pretty sure that i misspelled that and i ap
Well, that blog has started somewhat of a life of its own and the women who are part of it all have their personal stories, including me. My friend, who is simply wonderful, has offered to do some documentary photos and then once I reunited with my children is gracious enough to go a family photo shoot. Karen Gilbrande (i i am pretty sure that i misspelled that and i ap
ologize) you are truly an amazing person with a huge heart and i can't thank you enough. But, like all the other fantastic people who have rallied around me, i promise you will get a surprise from me.
As for the blog, please keep checking in because we update constantly, and it will also give you information on the book that we are working on. I can't believe how many people across the world who have been moved by it, and they are so thankful because for the first time for many of them, they can get help, someone will hear them and they don't feel so alone. I am truly thankful for all the readers, people that comment and especially to my sister/friend Anba-Lisa who started the blog. So tell your friends, co-workers, family even strangers about us and how we can help or they can help us by becoming part of this fantastic blogging community. Much love and light to you all, and thank you to all my friend on Facebook who have called or messaged me, and for getting the word out about this amazing blog. Much love!
As for the blog, please keep checking in because we update constantly, and it will also give you information on the book that we are working on. I can't believe how many people across the world who have been moved by it, and they are so thankful because for the first time for many of them, they can get help, someone will hear them and they don't feel so alone. I am truly thankful for all the readers, people that comment and especially to my sister/friend Anba-Lisa who started the blog. So tell your friends, co-workers, family even strangers about us and how we can help or they can help us by becoming part of this fantastic blogging community. Much love and light to you all, and thank you to all my friend on Facebook who have called or messaged me, and for getting the word out about this amazing blog. Much love!
Why ALJ Is A Bad Case Manager
During the three years that I lived on STX, I managed my chronic pain with the right combination of preventative meds and the occasional migraine injection (more about that to come...) which I was happy with. Then I was blessed with my second child and needed to move to where they had all the specialists a case like mine needed (found a great Neurologist who is a Myalgia Mommie with a full plate, she also suffers from migraines and has a two-year old, the test was simple- what will not pass thru breastmilk?) including the only perinatal inpatient mood disorder ward (more about PPD in a paper I wrote somewhere else).
I will really need to edit that sentence.
When bad things happen to good people in my life, I get sad. Then I try to fix them (I think that is the MPH "problem solving" thing again.) When I try to fix things I get a migraine. If it doesn't go away with medications, after about 5 days I would snap. I had to induce my new baby at 39 weeks because I had a blinding migraine for 2 weeks and there was nothing safe (that I wanted to expose Mimi to) that I could take. Ditto to breastmilk.
Another horribly written sentence.
Myalgia Mommies are any woman who lives with a form of chronic pain. I was thinking we could have 50 shades of committees for the number of mothers who live with a chronic medical condition. Kids are really hard to raise correctly, and we are doing it.
Winning!
If you are a myalgia mommie and want to share your story and your advice with this group, please enter a submission.
Also please form a submission review committee because we want to be nice to everyone. Only good people allowed in the club.
As soon as I can break this multi day migraine I am going to post my CV, I am very sensitive and insecure. Often I feel like people don't take me seriously.
This Deanna Doolittle thing has brought me out of retirement. I am now about to put on my big expert witness shoes that say "sorry, but you are a boy and can't walk in these, they make my calves look good so any discomfort is worth it." Don't worry, someone else is the stylist on the project!
I am really looking forward to going to CO to be with Deanna. Mostly because I get to hug her in person. Also we are getting a spa day, hair stylist, photo shoot, Kale chips and other amazing friends. Is it selfish of me to go and help her?
It is now past my bedtime and I have missed too many trains of thought lately.
Sweet dreams.
Cheers,
ALJ
I will really need to edit that sentence.
When bad things happen to good people in my life, I get sad. Then I try to fix them (I think that is the MPH "problem solving" thing again.) When I try to fix things I get a migraine. If it doesn't go away with medications, after about 5 days I would snap. I had to induce my new baby at 39 weeks because I had a blinding migraine for 2 weeks and there was nothing safe (that I wanted to expose Mimi to) that I could take. Ditto to breastmilk.
Another horribly written sentence.
Myalgia Mommies are any woman who lives with a form of chronic pain. I was thinking we could have 50 shades of committees for the number of mothers who live with a chronic medical condition. Kids are really hard to raise correctly, and we are doing it.
Winning!
If you are a myalgia mommie and want to share your story and your advice with this group, please enter a submission.
Also please form a submission review committee because we want to be nice to everyone. Only good people allowed in the club.
As soon as I can break this multi day migraine I am going to post my CV, I am very sensitive and insecure. Often I feel like people don't take me seriously.
This Deanna Doolittle thing has brought me out of retirement. I am now about to put on my big expert witness shoes that say "sorry, but you are a boy and can't walk in these, they make my calves look good so any discomfort is worth it." Don't worry, someone else is the stylist on the project!
I am really looking forward to going to CO to be with Deanna. Mostly because I get to hug her in person. Also we are getting a spa day, hair stylist, photo shoot, Kale chips and other amazing friends. Is it selfish of me to go and help her?
It is now past my bedtime and I have missed too many trains of thought lately.
Sweet dreams.
Cheers,
ALJ
Friday, August 3, 2012
Thursday, August 2, 2012
Our Deanna Doolittle Project- Help Needed!!
This blog was started as a forum for Mommies who suffer from a Chronic Pain condition but still manage to do it all (or most of it depending on the day!).
This post and a separate website will now be a quick test to see how many of us there are and how much we can overcome when crisis strikes. We need to help my sisterfriend and I know that many of you will be able to help her with words of support. She really needs it now.
Deanna Doolittle is an amazing woman who I have known since we where both adolescents.
Over the last 20 years we have both evolved in different directions but have maintained our connection as "sisterfriends." Sadly one of the many ways that we traveled a similar path is that Deanna and I both suffer from extreme chronic pain. In spite of this we both consider motherhood to be our highest and most rewarding calling.
In a future post I will explore the number of mothers who also suffer from chronic pain. I believe that we are a large sisterhood.
Deanna is the mother of five children, two grown sons and three beautiful little girls. The youngest is a 3 year old ray of sunshine. Like so many of us Deanna's world is full of little girls, play-dates, parent teacher conferences, pediatric well visits and obscene amounts of laundry. As with so many of the amazing woman I know I could write chapters about what a loving mother Deanna is, that too will come later.
Deanna is going through a crisis that could, theoretically, happen to any mother living with chronic pain. The entire medical history is now public record, suffice to say Deanna has Polycystic Ovarian Syndrome, pelvic floor tension myalgia (the triggering event also caused PTSD, she suffered anal and vaginal trauma two weeks before her 16th birthday), migraines, and has had 15 operations; 13 anal surgeries, 3 colonoscopies, a lost baby, and she will continue to need operations to address anal fussures and anal fistulas. The latest operation was a hysterectomy to correct severe endometriosis.
I need to hug her right now! There is a long list of other problems, IBS, anxiety and things that come with illness.
Last year Deanna returned to school and completed a degree in Massage Therapy. She graduated (and passed certification) with flying colors. During this period she had an abcess burst during a class and had to be driven home then to her specialist. Also during this period, she filed for a divorce.
Deanna takes no narcotic or pain medicine. She manages her condition with muscle relaxants that slur her speech but allow her to function and lead a very full life.
On July 5, Deanna was in extreme distress having suffered days of bloody loose stools (another chronic condition on her list) and in the afternoon took a shower and a muscle relaxant before a nap with the baby. In the manner of a child, her 8 year old wanted to go outside and to the park but Mommy needed to rest. When Deanna fell asleep, in a room with a baby gate, her daughter decided to let the baby out and cause trouble. She went to the neighbors and said her "pill popping mother" (as her father and step-mother teach her) was passed out and she couldn't wake her up. At the neighbors house DHS was called for neglect. Deanna heard the neighbors at the front door and woke to great them. The next day a social worker came to her "messy" house and noted that Deanna was slurring her words. DEANNAS CHILDREN WERE REMOVED FROM HER HOME.
The baby remains in foster care. Deanna has given all medical records, prescriptions and many urine samples to DHS. We are working on a plan to address her daughter's anger and to teach her that "Mommy has to take this medicine for a reason."
We are getting everything sorted out. A date for trial has been set. This scenario could be enacted on any Myalgia Mommies going through a divorce. The truth will always come out, in this case the truth is she has been very wronged by a system that doesn't understand chronic pain.
I am setting up the Deanna Doolittle Project on a separate website where we will be collaborating on this case and possibly a book.
Please help.
Thank you,
Anna-Lisa Johanson JD-MPH
This post and a separate website will now be a quick test to see how many of us there are and how much we can overcome when crisis strikes. We need to help my sisterfriend and I know that many of you will be able to help her with words of support. She really needs it now.
Deanna Doolittle is an amazing woman who I have known since we where both adolescents.
Over the last 20 years we have both evolved in different directions but have maintained our connection as "sisterfriends." Sadly one of the many ways that we traveled a similar path is that Deanna and I both suffer from extreme chronic pain. In spite of this we both consider motherhood to be our highest and most rewarding calling.
In a future post I will explore the number of mothers who also suffer from chronic pain. I believe that we are a large sisterhood.
Deanna is the mother of five children, two grown sons and three beautiful little girls. The youngest is a 3 year old ray of sunshine. Like so many of us Deanna's world is full of little girls, play-dates, parent teacher conferences, pediatric well visits and obscene amounts of laundry. As with so many of the amazing woman I know I could write chapters about what a loving mother Deanna is, that too will come later.
Deanna is going through a crisis that could, theoretically, happen to any mother living with chronic pain. The entire medical history is now public record, suffice to say Deanna has Polycystic Ovarian Syndrome, pelvic floor tension myalgia (the triggering event also caused PTSD, she suffered anal and vaginal trauma two weeks before her 16th birthday), migraines, and has had 15 operations; 13 anal surgeries, 3 colonoscopies, a lost baby, and she will continue to need operations to address anal fussures and anal fistulas. The latest operation was a hysterectomy to correct severe endometriosis.
I need to hug her right now! There is a long list of other problems, IBS, anxiety and things that come with illness.
Last year Deanna returned to school and completed a degree in Massage Therapy. She graduated (and passed certification) with flying colors. During this period she had an abcess burst during a class and had to be driven home then to her specialist. Also during this period, she filed for a divorce.
Deanna takes no narcotic or pain medicine. She manages her condition with muscle relaxants that slur her speech but allow her to function and lead a very full life.
On July 5, Deanna was in extreme distress having suffered days of bloody loose stools (another chronic condition on her list) and in the afternoon took a shower and a muscle relaxant before a nap with the baby. In the manner of a child, her 8 year old wanted to go outside and to the park but Mommy needed to rest. When Deanna fell asleep, in a room with a baby gate, her daughter decided to let the baby out and cause trouble. She went to the neighbors and said her "pill popping mother" (as her father and step-mother teach her) was passed out and she couldn't wake her up. At the neighbors house DHS was called for neglect. Deanna heard the neighbors at the front door and woke to great them. The next day a social worker came to her "messy" house and noted that Deanna was slurring her words. DEANNAS CHILDREN WERE REMOVED FROM HER HOME.
The baby remains in foster care. Deanna has given all medical records, prescriptions and many urine samples to DHS. We are working on a plan to address her daughter's anger and to teach her that "Mommy has to take this medicine for a reason."
We are getting everything sorted out. A date for trial has been set. This scenario could be enacted on any Myalgia Mommies going through a divorce. The truth will always come out, in this case the truth is she has been very wronged by a system that doesn't understand chronic pain.
I am setting up the Deanna Doolittle Project on a separate website where we will be collaborating on this case and possibly a book.
Please help.
Thank you,
Anna-Lisa Johanson JD-MPH
Thursday, May 24, 2012
Google +
We have 517 page views! Yay! So we have created a google + page! Just search us as Myalgia Mommies .https://plus.google.com/109541258661355949319/about
Tuesday, May 15, 2012
Dr. Hashimoto, I Presume
Finally... this snake of pain that's been coiled around my back and joints and causing my myalgia for the past five months has a name. And the diagnosis is... <drum roll, please>... Hashimoto's Disease. Yes, I know. It sounds more like a poorly dubbed Godzilla movie than an actually affliction, but this little bugger causes a lot of problems.
Hashimoto's Disease is the leading cause of hypothyroidism in the good ole US of A. It's an auto-immune disease that causes the body's immune system to see the thyroid gland as an invader and attack it with a full arsenal of AMDs (Antibodies of Mass Destruction). There is no known cure for Hashimoto's Disease, but in the long list of disease possibilities that my string of doctors considered, it is certainly one of the most benign. That doesn't mean that it's symptoms - fatigue, depression, weight gain, cold intolerance, constipation, muscle cramps, decreased concentration, and aches and pains - don't suck. 'Cause I'm here to tell you that they do. And I think most Myalgia Mommies would agree with me.
Luckily, I've been on the levothyroxine doctors prescribe for the hypothyroidism caused by damage to my thyroid for the past two years. I also have a pretty severe Vitamin D deficiency, but 50,000 units a week should knock that out in no time. I'm still waiting for the back pain to decrease or (hopefully) disappear, but the aches and pains in my knees and hips have improved ten-fold. I feel better than I have in... well... five months, and I've managed to lose a tiny bit of the weight that has crept up on me over the years. Maybe I'll be back to exercising at full strength someday soon.
I feel very thankful to have finally received a diagnosis. It's such a relief to have a known enemy to fight. Though I will have to be on medication for the rest of my life and closely monitor my levels, I know it could have been so much worse.
I still have good days and bad days. I spent most of yesterday curled up in bed because the back pain returned with a vengeance, but now that I can name my demon, I know I can handle it. Dr. Hakaru Hashimoto, if you were alive today, I would kiss you. –cvw
Hashimoto's Disease is the leading cause of hypothyroidism in the good ole US of A. It's an auto-immune disease that causes the body's immune system to see the thyroid gland as an invader and attack it with a full arsenal of AMDs (Antibodies of Mass Destruction). There is no known cure for Hashimoto's Disease, but in the long list of disease possibilities that my string of doctors considered, it is certainly one of the most benign. That doesn't mean that it's symptoms - fatigue, depression, weight gain, cold intolerance, constipation, muscle cramps, decreased concentration, and aches and pains - don't suck. 'Cause I'm here to tell you that they do. And I think most Myalgia Mommies would agree with me.
Luckily, I've been on the levothyroxine doctors prescribe for the hypothyroidism caused by damage to my thyroid for the past two years. I also have a pretty severe Vitamin D deficiency, but 50,000 units a week should knock that out in no time. I'm still waiting for the back pain to decrease or (hopefully) disappear, but the aches and pains in my knees and hips have improved ten-fold. I feel better than I have in... well... five months, and I've managed to lose a tiny bit of the weight that has crept up on me over the years. Maybe I'll be back to exercising at full strength someday soon.
I feel very thankful to have finally received a diagnosis. It's such a relief to have a known enemy to fight. Though I will have to be on medication for the rest of my life and closely monitor my levels, I know it could have been so much worse.
I still have good days and bad days. I spent most of yesterday curled up in bed because the back pain returned with a vengeance, but now that I can name my demon, I know I can handle it. Dr. Hakaru Hashimoto, if you were alive today, I would kiss you. –cvw
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Yesterday was a supervised visit with baby Charlotte, who is 3 and has been in foster care since July 6.
At the end of the visit, the social worker had to take her away again.
Charlotte began to cry and reach out for her mother. She was crying, "Mommy, please let me come home! Mommy, I need you!"
This situation is being sorted out. I fear that any Myalgia Mommie going through a conflict (in this case divorce) could lose custody of her children.
As a Myalgia Mommie who suffers from chronic migraines, when things like this happen to good people (in this case a friend of twenty years) I have to put on my law school hat and help sort out an ignorant Social Worker. WAIT. There are excellent Social Workers in our world, probably some that are also Myalgia Mommies.
Please leave a comment of support for Deanna. She misses her kids. I would have a complete breakdown in her situation and believe she is navigating the system gracefully.