The story of any struggle with Myalgia must include some "laugh about it now" story about opiates. My own decade long saga includes several "Annadotes" that I try to tell in a funny way but if I'm not careful they come across as bitter or pathetic.
This week pain medications are on my mind because even though I am on "Mommy Leave" or disabled status I still read all the Centers for Disease Control press releases and the latest one is that deaths from overdose of opiate medication has risen for the 11th year in a row. When I read this and posted it to the Myalgia Mommies Facebook page, I felt a lump in my gut.
Anyone with a real chronic pain condition knows the frustration of meeting with a new doctor or seeking emergency treatment and wanting to scream "this is not drug seeking behavior!" For me, the last thing I want is pain medicine, it only makes you not care that you are in pain, it doesn't really ever make the pain entirely go away. At least it never has for me.
When I am seeking treatment it is always with the hope that there is a new drug or therapy that will address my specific condition and treat it, not just a pain medicine that will make me numb to the world.
As a Mother, I would never drink and drive. When I get a phone call while driving, I have my older daughter play personal assistant and answer for me. So I don't want to take any level of drugs that would endanger my most precious darlings. (I have driven with one eye closed due to a blinding migraine but I can still focus on the road.)
For years I have struggled to learn to take my opiates correctly. My neurologist has explained pain as a rising curve and told me to take the medicine when I feel the beginning of a bad flare. If you take the medicine when you are already in great pain it won't be effective. I invariably wait until it is too late. I only remember that I have narcotic pain medicine to take when I am in excruciating pain and by then it is "too late" and the medicine only takes the edge off.
Many years ago, the first time I took a daily slow release of OxyContin, a young family member had a friend who became an addict taking the same drug recreationally and ended up in rehab. I made the mistake back then of telling family members what medications I was taking. In those days my illness was new and I was looking to in laws for support. I only made that mistake once.
Under pressure from guilt I weaned off the opiate and the overwhelming pain and resulting time confined to my bed led to a horrible depression. Fortunately, I was under the care of excellent doctors who convinced me of the need to resume a course of treatment that included pain medication.
This week has been a lovely adventure. My 16 month old is a dare devil extraordinaire. She delights in climbing on the kitchen table and flinging herself into my arms. She choke holds and rides my poor cat. When my back and nerves are completely shot and I think I can't go on she tenderly hugs me and gives the sweetest kisses. She also sits on my back. This baby brings me her book, says "read it" and if I don't move fast enough hits me with the book. The pain of being hit with a book distracts me from my fibro flare.
In order to make it thru a bad I use two different muscle relaxants that I alternate in order to keep from forming a tolerance. In my medicine cabinet I have an opiate pain medicine (Vicodin) that I intentionally ignore because I know that if I take if two days in a row, on the third day I will have a rebound headache from the drug. So I push it to the back of the cupboard and try everything else first.
I can only take oxycontin and dilauded because I have an allergic reaction to Morphine. I learned this in a fun way that led to me ordering our living room furniture in white when my older daughter was a little over a year old. Fortunately the couch and matching chair had removable covers and my exploration of the different properties of cleaning products began.
I hope this news of abuse doesn't make it harder for us Myalgia Mommies to get the medication that we need. On a deeper level I hope with all my heart that there aren't women out there overwhelmed and in pain who ignore the dosing instructions and take too many pills. The pain medicine can help. It also kills.
The temptation to take extra pills thinking that they might work better or add more relief is easy to sympathize with, particularly for someone who is recently diagnosed. After my many years of trying to find a good mix of therapy, I understand the importance of keeping medication in reserve for when it is really needed. Our bodies build tolerances to everything. The rising death count reported by the CDC indicate that at a certain level the pain medicine is deadly.
The moral of this story is try harder to go without or use less not more. Lying on the couch with my aromatherapy pillow over my eyes I am with my girls. Listening to them play and watch TV. I can breathe thru thru a bad day and be there for tomorrow. Please keep this in mind and always take less than needed not more.
If you read my other blog, The Silver Ribbon Campaign, you will learn that I lost my Mother to a brain disease. I dearly hope this blog can provide a Myalgia Mommy with the knowledge that you are not alone and thousands of other women also live with daily pain, and take pain medicine only as prescribed.
I write while my baby naps. My body also cries out for a nap in this cold weather and I need another cup of coffee and to bury myself under a blanket.
Cheers,
ALJ
From fibromyalgia and rheumatoid arthritis, chronic fatigue syndrome to lupus, Myalgia Mommies is an online blog and community for mothers living with the day-to-day problems of chronic pain and parenting. Just trying to share coping tricks to lift another mom up....
Showing posts with label myalgia. Show all posts
Showing posts with label myalgia. Show all posts
Friday, February 22, 2013
Thursday, November 1, 2012
MM and Cleaning with Bleach
In my Twitter feed I am calling today Toxic Thursday.
Following Hurricane Sandy, FEMA and The Center for Disease Control (CDC) are both advising people to be careful cleaning after the storm because the water has toxic chemicals and raw sewage all mixed together. After the storm water recedes there is one miracle product that will disinfect and kill bacteria, flu viruses and even AIDS: BLEACH.
Decades ago, as a high school student, I participated in the CDC AIDS companion advocate training program. This was back before we knew what AIDS was, and back when some ignorant people thought if a mosquito bit someone with AIDS then bit them, they would be gay. It was Colorado. In the class I learned that a solution with a little bleach would kill the AIDS virus.
Last week my baby was sick. At the pediatrician I learned that one of our local elementary schools has a whooping cough outbreak because I live in an area where people don't vaccinate their children (please vaccinate your children). I have a Master in Public Health, and I don't want to tell you about the MILLIONS of children who die every year. Fortunately, my baby had a different virus and recovered in 24 hours. All of the things going around can be killed by bleach.
When I first became bed ridden and incredibly sick over a decade ago, I was a medical mystery. I have always been chemically sensitive and use only plant based cleaners in my house.
Once, helping a friend move in college, we mixed bleach and ammonia while cleaning and almost killed ourselves. I've learned many things since then. Now I use organic cleaners and bleach.
There is increasing research that overexposure to a sterile environment is harmful to young children. Eating dirt helps build a good immune system. Generally, I use this as an excuse not to clean my house. Also, I let my kids get really dirty.
Last night, I hosted a Halloween party, and now my house is full of germs. I am immune suppressed, so now I have to clean. Other people's children put my kid's toys in their mouths, and it's time to disinfect while the baby naps.
I already have a headache. If you want to play from home, you could bet on how long until my fibro flares from the strenuous activity. Normally, I would stretch out the cleaning over the course of the week, and wait until the weekend when my hubby can help, but Sunday we are going out of town, so things must get done.
These are the things that make us Myalgia Mommies special. We decorate our houses like a Kindergarten classroom then have to take everything back down. I miss the days of putting on a costume and going to a party!
Please feel free to leave a comment with your best cleaning tip or just say, "Awe, poor thing, housework is evil!"
Cheers,
ALJ
Following Hurricane Sandy, FEMA and The Center for Disease Control (CDC) are both advising people to be careful cleaning after the storm because the water has toxic chemicals and raw sewage all mixed together. After the storm water recedes there is one miracle product that will disinfect and kill bacteria, flu viruses and even AIDS: BLEACH.
Decades ago, as a high school student, I participated in the CDC AIDS companion advocate training program. This was back before we knew what AIDS was, and back when some ignorant people thought if a mosquito bit someone with AIDS then bit them, they would be gay. It was Colorado. In the class I learned that a solution with a little bleach would kill the AIDS virus.
Last week my baby was sick. At the pediatrician I learned that one of our local elementary schools has a whooping cough outbreak because I live in an area where people don't vaccinate their children (please vaccinate your children). I have a Master in Public Health, and I don't want to tell you about the MILLIONS of children who die every year. Fortunately, my baby had a different virus and recovered in 24 hours. All of the things going around can be killed by bleach.
When I first became bed ridden and incredibly sick over a decade ago, I was a medical mystery. I have always been chemically sensitive and use only plant based cleaners in my house.
Once, helping a friend move in college, we mixed bleach and ammonia while cleaning and almost killed ourselves. I've learned many things since then. Now I use organic cleaners and bleach.
There is increasing research that overexposure to a sterile environment is harmful to young children. Eating dirt helps build a good immune system. Generally, I use this as an excuse not to clean my house. Also, I let my kids get really dirty.
Last night, I hosted a Halloween party, and now my house is full of germs. I am immune suppressed, so now I have to clean. Other people's children put my kid's toys in their mouths, and it's time to disinfect while the baby naps.
I already have a headache. If you want to play from home, you could bet on how long until my fibro flares from the strenuous activity. Normally, I would stretch out the cleaning over the course of the week, and wait until the weekend when my hubby can help, but Sunday we are going out of town, so things must get done.
These are the things that make us Myalgia Mommies special. We decorate our houses like a Kindergarten classroom then have to take everything back down. I miss the days of putting on a costume and going to a party!
Please feel free to leave a comment with your best cleaning tip or just say, "Awe, poor thing, housework is evil!"
Cheers,
ALJ
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Location:
Chapel Hill, NC 27514, USA
Tuesday, October 16, 2012
Mommie Blogger FAIL and Insight!
If you see me in real life my baby is wearing leg warmers. It is not me having a childhood flashback. She is in a cast.
It's a long story but most things involving parenting are. Mommies have a different road. My poor baby just woke up. She cant stay asleep for her naps because of the cast.
We were at the hospital on October 13, with a 13 month old baby and I was sending emails about a 2013 calendar as a fundraising project.
I had to call in a refill on a "break thru" drug and it said refill untill "7/13" so I called the parmacist thinking it was 14/Ocotober/14. Im so tired, I am time traveling.
I wanted to post that on facebook but my husband said it just sounded weird and I should go to bed.
That pretty much is how I feel about blogging about being a Mom who suffers from some form of Chronic Pain. The more I grow up, research, make deeper connections to other women, the more I realize that most of us have some major issue in life that is chronic pain.
My really deep thought for the day is that I met a woman who has a husband who is being tested to determine what his chronic pain is being caused by. They have 3 teenage girls. That's heavy lifting. So I met a myalgia mommie by proxy because she is reading all the tests with her husband and probably understands more medical terms.
My other deep thought is that all the research from every disease keeps coming back to one thing: healthy sleep patterns.
My blogging time is when my baby girl is taking her mid morning nap and my house is not a biohazard. That can be a narrow window. We live dangerous lives. Also, need more sleep.
I feel like I did one good deed today. I reminded the myalgia mommy I met to check her husband for vitamin D levels. Often just a piece of the puzzle but they don't check it in men. My amazing island Doctor taught me that.
If you read this, and have had a child in a cast, please feel free to post tips for keeping her entertained and cleanish!
Thanks.
Anna-Lisa
It's a long story but most things involving parenting are. Mommies have a different road. My poor baby just woke up. She cant stay asleep for her naps because of the cast.
We were at the hospital on October 13, with a 13 month old baby and I was sending emails about a 2013 calendar as a fundraising project.
I had to call in a refill on a "break thru" drug and it said refill untill "7/13" so I called the parmacist thinking it was 14/Ocotober/14. Im so tired, I am time traveling.
I wanted to post that on facebook but my husband said it just sounded weird and I should go to bed.
That pretty much is how I feel about blogging about being a Mom who suffers from some form of Chronic Pain. The more I grow up, research, make deeper connections to other women, the more I realize that most of us have some major issue in life that is chronic pain.
My really deep thought for the day is that I met a woman who has a husband who is being tested to determine what his chronic pain is being caused by. They have 3 teenage girls. That's heavy lifting. So I met a myalgia mommie by proxy because she is reading all the tests with her husband and probably understands more medical terms.
My other deep thought is that all the research from every disease keeps coming back to one thing: healthy sleep patterns.
My blogging time is when my baby girl is taking her mid morning nap and my house is not a biohazard. That can be a narrow window. We live dangerous lives. Also, need more sleep.
I feel like I did one good deed today. I reminded the myalgia mommy I met to check her husband for vitamin D levels. Often just a piece of the puzzle but they don't check it in men. My amazing island Doctor taught me that.
If you read this, and have had a child in a cast, please feel free to post tips for keeping her entertained and cleanish!
Thanks.
Anna-Lisa
Wednesday, October 10, 2012
World Mental Health Day
Today, October 10th, is World Mental Health Day. The World Health Organization has identified Depression as the focus for this year. Globally, depression is the second greatest burden of disease affecting 350 million people worldwide.
For a Myalgia Mommie depression is a little black dog that is always nipping at our heels. I have found that we have an amazing weapon against it: our children.
True clinical depression takes clinical intervention and is so overwhelming that when an individual is in the throws of the disease, even our darling children can't reach through. This post is about "Mental Wellness," a crucial part of life that we do everyday and that keeps us going as Myalgia Mommies.
Most of the activities of finding a daily moment of beauty, engaging in an activity that gives us joy and finding pleasure in simple acts, we have adopted as a way of life. Studies have shown, and health professionals call this, mental wellness.
Recent research into my myalgia, "fibromyalgia," has shown that medication alone will not diminish symptoms and a holistic approach including these lifestyle changes is needed to address symptoms.
My darling baby is waking up. She is my daily joy and the reason this blog has so few posts.
I hope all you Myalgia Mommies have a chance to sit down with a cup of tea today, smile to yourself, congratulate yourself for mindful self-care, and bask in the beauty that you are. My tea party will be me and my baby, and we will toast you.
If it is possible to gain strength and support knowing that you are part of a greater web of women quietly trying to live with grace through a similar circumstance, then this blog has served it's purpose.
Please share a picture or short description of your cup of tea.
Hopefully today we will put up some pumpkin lights and have a photo worthy of sharing.
XO
ALJ
For a Myalgia Mommie depression is a little black dog that is always nipping at our heels. I have found that we have an amazing weapon against it: our children.
True clinical depression takes clinical intervention and is so overwhelming that when an individual is in the throws of the disease, even our darling children can't reach through. This post is about "Mental Wellness," a crucial part of life that we do everyday and that keeps us going as Myalgia Mommies.
Most of the activities of finding a daily moment of beauty, engaging in an activity that gives us joy and finding pleasure in simple acts, we have adopted as a way of life. Studies have shown, and health professionals call this, mental wellness.
Recent research into my myalgia, "fibromyalgia," has shown that medication alone will not diminish symptoms and a holistic approach including these lifestyle changes is needed to address symptoms.
My darling baby is waking up. She is my daily joy and the reason this blog has so few posts.
I hope all you Myalgia Mommies have a chance to sit down with a cup of tea today, smile to yourself, congratulate yourself for mindful self-care, and bask in the beauty that you are. My tea party will be me and my baby, and we will toast you.
If it is possible to gain strength and support knowing that you are part of a greater web of women quietly trying to live with grace through a similar circumstance, then this blog has served it's purpose.
Please share a picture or short description of your cup of tea.
Hopefully today we will put up some pumpkin lights and have a photo worthy of sharing.
XO
ALJ
Monday, August 27, 2012
A Fashionable Myalgia Mommie
This weekend we met Fleming Samuels, owner of Fleming Clothing and fellow Myalgia Mommie. We were blown away by both her clothing designs and her story. Her clothes are made from 100% organic cotton and are produced locally right here in the Triangle area of NC. The fabrics are vibrant and fun, and you can design your own outfits. Fleming Clothing will ship them right to your door. How easy is that! Even the website is colorful and fun!
In the coming weeks, we are hoping (fingers crossed) that Fleming can find some time to write a guest blog for us here at Myalgia Mommies! We look forward to hearing from her soon! And we're sure she would love to hear from you, so stop by her website and tell her the Myalgia Mommies sent you!
In the coming weeks, we are hoping (fingers crossed) that Fleming can find some time to write a guest blog for us here at Myalgia Mommies! We look forward to hearing from her soon! And we're sure she would love to hear from you, so stop by her website and tell her the Myalgia Mommies sent you!
Sunday, August 26, 2012
Civil Union Mediation
Feel free to use this outline. If it helps you, send me $. If you don't have any extra $ use it with my blessing.
1. Custody
1.a. Mother primary custody
1.a.1. Week on/ week off not good for well being of children.
1.a.1.a. Children need a primary residence Mon.-Fri. For emotional growth
1.a.1.b. mother will reasonably accommodate all visitation requests
1.a.1.c. Weekends and holidays TBD
2. Healthcare
2.a. Mother will insure child.
2.a.1. Responsible for all well child pediatric visits.
2.a.2 F will be informed/consulted when major medical issues arise.
2.a.3. F will reimburse M for 50% of all HC expenses.
3. School
3.a. Child will attend Public School
3.b. M will notify F of all school events and conferences
3.c. Until age of public school, a ore-K program will be used.
3.c.1. Choice of Pre-k is Montessori method.
3.c.1.a. F will pay 50% of school fees.
4. Child Support
4.a. F will pay 30% of income or $1k/month
5. Mutual assets
5.a. House to M (she owns it)
5.b. debt
5.b.1 M will provide court w accounting of mutual debt. F to pay 50% of all outstanding mutual debt.
5.c. Other assets
5.c.1. Parties will retain all assets they brought to marriage.
6. Fees
6.a. If Father wishes to challenge the above agreement he will be responsible for attorney and court fees incurred in dispute.
7. Amendments
7.a. This agreement can be amended by mutual agreement of M & F.
The End
Divorce Mediation is easy!
Xo
ALJ
1. Custody
1.a. Mother primary custody
1.a.1. Week on/ week off not good for well being of children.
1.a.1.a. Children need a primary residence Mon.-Fri. For emotional growth
1.a.1.b. mother will reasonably accommodate all visitation requests
1.a.1.c. Weekends and holidays TBD
2. Healthcare
2.a. Mother will insure child.
2.a.1. Responsible for all well child pediatric visits.
2.a.2 F will be informed/consulted when major medical issues arise.
2.a.3. F will reimburse M for 50% of all HC expenses.
3. School
3.a. Child will attend Public School
3.b. M will notify F of all school events and conferences
3.c. Until age of public school, a ore-K program will be used.
3.c.1. Choice of Pre-k is Montessori method.
3.c.1.a. F will pay 50% of school fees.
4. Child Support
4.a. F will pay 30% of income or $1k/month
5. Mutual assets
5.a. House to M (she owns it)
5.b. debt
5.b.1 M will provide court w accounting of mutual debt. F to pay 50% of all outstanding mutual debt.
5.c. Other assets
5.c.1. Parties will retain all assets they brought to marriage.
6. Fees
6.a. If Father wishes to challenge the above agreement he will be responsible for attorney and court fees incurred in dispute.
7. Amendments
7.a. This agreement can be amended by mutual agreement of M & F.
The End
Divorce Mediation is easy!
Xo
ALJ
MM Health Alert
Hi fellow Myalgia Mommies, we are under a few public health red alerts that I wanted to share with you.
On the East Coast and South there is a nasty West Nile Virus going around (in St. Croix our mosquito bourn disease is Dengue Fever, 1in 3 die, others call it the "bone break fever. The symptoms basically are the same for my fibromyalgia so I was not sympathetic to nurses who had it and whined about being in pain!)
Please cover yourself and your kids in bug spray. The West Nile is getting into a death count.
The second warning applies to everyone who comes into contact with pigs. Swine flu is going around. You can get an H1N1 vaccine ordered thru your pharmacy or primary care doctor. Dying from Swine Flu is just silly. I'm just avoiding pigs (except in the form of meat!) but my kid got the vaccine in 2010.
Third warning, this is local to NC, we have had to put several horses, a few dozen dogs and more to sleep for rabies. Even the baby is now current for rabies. The treatment is painful if you get to the point where you are foaming at the mouth, they put you in a medically induced coma.
Lately I have been working in West Coast time zone, living with a baby on the East Coast. I need more sleep.
Finally, please don't start any fires.
This is the end of Myalgia Mommies public health warnings for Labor Day Weekend.
Xo
ALJ
JD-MPH
On the East Coast and South there is a nasty West Nile Virus going around (in St. Croix our mosquito bourn disease is Dengue Fever, 1in 3 die, others call it the "bone break fever. The symptoms basically are the same for my fibromyalgia so I was not sympathetic to nurses who had it and whined about being in pain!)
Please cover yourself and your kids in bug spray. The West Nile is getting into a death count.
The second warning applies to everyone who comes into contact with pigs. Swine flu is going around. You can get an H1N1 vaccine ordered thru your pharmacy or primary care doctor. Dying from Swine Flu is just silly. I'm just avoiding pigs (except in the form of meat!) but my kid got the vaccine in 2010.
Third warning, this is local to NC, we have had to put several horses, a few dozen dogs and more to sleep for rabies. Even the baby is now current for rabies. The treatment is painful if you get to the point where you are foaming at the mouth, they put you in a medically induced coma.
Lately I have been working in West Coast time zone, living with a baby on the East Coast. I need more sleep.
Finally, please don't start any fires.
This is the end of Myalgia Mommies public health warnings for Labor Day Weekend.
Xo
ALJ
JD-MPH
Saturday, August 25, 2012
MM support each other, with clothes!
Today at University Mall Fleming of Fleming Clothing is having her first warehouse sale with a Migraine!
She is awesome! She designs the clothes, has the all organic adorable prints sewn in her NC factory. Today she is selling each left over item for $5 so come get ur kids adorable clothes!
Xo
ALJ
She is awesome! She designs the clothes, has the all organic adorable prints sewn in her NC factory. Today she is selling each left over item for $5 so come get ur kids adorable clothes!
Xo
ALJ
Wednesday, August 15, 2012
Daily List, revised
Todays List
1. Make tea
1.a Drink at least 4 cups
1.a.1 Note from throat to brain
1.a.1.a Hey we are swollen over here!
1.a.1.b You are losing your voice.
1.a.1.c Do you really want to get strep?
1.a.2. Reply from Brain
1.a.2.a.I'm drinking the tea. Shut it!
2. Finish everything from yesterday's list.
2.a. Re-read yesterdays list
3. Work
4. Pack for beach
5. Use the word #Kafkaesque in every tweet I send today.
6. Try to stop being so Kafkaesqe.
6.a. We all read "The Trial"
6.a.1 We all relive "The Trial" several times a day
6.a.1.a remember to follow up on 8 daily trials
6.a.1.b. only accept 2 new trials
6.a.1.b.1 this is tiring work!
7. Try to blow up the internet/my phone/and/or save the world!
Please ask people to stop blowing up my phone. I habs a sored throat.
Posted by
Anna-Lisa Johanson JD-MPH
at
11:20 AM
1.a Drink at least 4 cups
1.a.1 Note from throat to brain
1.a.1.a Hey we are swollen over here!
1.a.1.b You are losing your voice.
1.a.1.c Do you really want to get strep?
1.a.2. Reply from Brain
1.a.2.a.I'm drinking the tea. Shut it!
2. Finish everything from yesterday's list.
2.a. Re-read yesterdays list
3. Work
4. Pack for beach
5. Use the word #Kafkaesque in every tweet I send today.
6. Try to stop being so Kafkaesqe.
6.a. We all read "The Trial"
6.a.1 We all relive "The Trial" several times a day
6.a.1.a remember to follow up on 8 daily trials
6.a.1.b. only accept 2 new trials
6.a.1.b.1 this is tiring work!
7. Try to blow up the internet/my phone/and/or save the world!
Please remind people to take the stupid physics poll so we know which ones are stupid.
Labels:
blogging,
children,
Kafka,
Kafkaesque,
myalgia,
physics,
strep throat,
tea,
trial
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