Monday, April 23, 2012

Anna-Lisa Finally Speaks

As the Myalgia Mommy who hasn't posted yet because I am too busy dealing with my beautiful 11 year old and her pony and my amazing little 7 month baby who daily fill my life with love, I fully agree with the letter we received from a reader. Having kids rocks!

I have had severe, disabling fibromyalgia since about 1999, the year before my oldest daughter was born. I also suffer from chronic daily migraines that I started getting in Kindergarden. I have spent months in bed and gone as far as Kerala, India to find a good treatment.

It's the sleep deprivation and nursing that is killing me these days. I'm only able to take B, D, cal/mag and prenatal vitamins because I am nursing. Every few weeks I get broken down and have to take migraine meds and pump and dump the milk. Both the baby and Daddy hate those days!

Some days lifting the 30 pound carseat onto the stroller kills me. But I'm having fun.

This blog is about advice, like go to the drive thru zoo! Hours of amazing fun with very little heavy lifting!

Also, when the kids aren't in the car, it's fun - and therapeutic for me - to bitch a little!

Cheers,
Anna-Lisa

Inbox: A Letter from A Reader

Editorial Note: We received the following email from a reader, and after asking her permission, the Myalgia Mommies would like to share it with you because she eloquently sums up what we were trying to say. This author is another Myalgia Mommy who is totally rocking it!


Blogging, no matter how innocuous it seems the topic may be, is bound to ruffle some feathers, right?  Someone is always bound to disagree. I hope that you can read this with an open mind. Knowing me, I'll probably be a bit blunt, but please know I'm not trying to be mean or offensive. And I just got your guard up, didn't I?  hehehee

I've had a (rare, but specialist verified many times over) dual diagnosis of Fibromyalgia and Chronic Fatigue Syndrome (among other things) since 1996, when I was just 20 years old. I got sick two weeks after I married my first husband (there's the trigger - huge mistake). I was one of the first in the country to receive Social Security Disability benefits for Chronic Fatigue Syndrome (though I have since asked that they discontinue those benefits, against medical recommendations... long story, and the benefits have stopped). I'm the mother to two boys, ages 5 1/2 and nearly 4. I've got multiple friends who are also mothers who deal with chronic pain as well, though I've never been one to seek out others like me. Well, at least not in the past 15 or so years. A former coworker told me about your blog and since it's local and relevant to me as someone with chronic illness, I checked it out. I was only there a moment when I read this: "Chronic pain sucks! And parenting through the chronic pain double sucks!"


Really?  

I have to say that I find this not only marginally offensive, but also grossly inaccurate. I've run it by a few of my chronically ill friends and they felt the same prod from that statement. Are you honestly saying that having children has made your life WORSE?

If ANYTHING, having the love and energy of my children is motivational and healing. They bring comfort and unconditional love that fast becomes foreign to a PWC. They don't judge. They don't call you a hypochondriac.  Yes, they are demanding and they require a metric shit ton of work and drain already empty energy reserves, but ya know what? What they give in return is ANYTHING but suck.  

I understand that you've not been sick for very long (though I know it feels long to you), and maybe that's a big part of it. I still remember the newness of it. The complete destruction of everything I was and everything I could do, and how that was replaced with nothing but failure and pain and rage and madness and self-loathing. I remember losing every last one of my friends. I remember mourning all the things I used to be and the buzzing ball of energy I had always been. I even remember believing 'them' when they said it was all in my head, at least for a while. I remember wishing it away - willing myself well and fighting so hard, only to be knocked on my ass so hard that I ended up literally bedridden for months, even having to be carried to the bathroom. The bullshit we all have faced (and even after all these years, some of it still comes up) is serious, but the reality is that there ARE things that we have to change our view on not only for ourselves, but for every single person we come in contact with. The biggest one, to me, has been to appreciate every single thing - to find the positive in absolutely anything and everything. And the biggest of those positives is the very existence of my children. If I didn't have them, my ass WOULD stay in the bed each morning, as long as possible. And ya know, sometimes it does.  But not without them there to remind me that even though I'm hurting and can't be Her, I have immense value and I am completely loved. And to label that as "suck" just pisses me right the fuck off. I have a tendency to ramble, so I'm going to stop here. 

I hope you'll take a moment to rethink your view, or at the very least, your wording. You're essentially stabbing mothers and children with that statement.

Thanks for taking the time to read this. 

Sunday, April 22, 2012

Point of View from 11 year old daughter

My Mom is Anna-Lisa Johanson. I own and ride a pony named Dream. Riding is an intense, outdoor, hands on, work! My Mom was pregnant during one of my Pony and Me overnight camps and she came anyway as a chaperone. I know she went through a lot of pain and I also know it was hard. It is hard living with someone going through chronic pain. You have to do extra chores and when she has a headache or too tired ( I am not complaining). It is hard to have sleepovers at my house because my Mom is sometimes in pain and she cannot handle more than 2 children. My Mom has had chronic pain my WHOLE life, but then when we moved here she met Ms. Christy.  ( Ms. Christy other blogger on Myalgia Mommies) we started having fun and we started ignoring the chronic pain. We did fun crafts and took fun road trips that were pain free AND fun! My Mom is the best!
-Sheela

Friday, April 20, 2012

Living Around

I had a hard time falling asleep last night. I couldn't stop thinking about the concept of living WITH chronic pain. I'm pretty sure I'm not walking hand-in-hand through a field of wildflowers with my bodily aches. So I decided I must be living AROUND it.

I look at it this way: less than a year ago, I was a vibrant, healthy woman with a triathlete husband and a son who wrestles and plays lacrosse. We were an incredibly active family, camping and hiking every weekend. My son and I were even training for a 5K together. I used to rock climb, for heaven's sake. Now, I consider it an accomplishment to walk up the stairs with a basketful of laundry. And more often than not, I get my husband to carry it up for me.

Living AROUND chronic pain means that I have to carefully plan my agenda for the week and schedule my errands to coincide with the times of the day when I will have enough energy. I know I have to grocery shop in the mornings after I drop my son off at school because I'm too tired in the afternoons and I know I can't handle the crowds. I know I will hit a wall around 3 o'clock and need a nap, so I make sure I've completed at least one item on my list by then so I can feel I've spent my day productively.

Since I'm not working right now, I've been trying to do little home improvement projects - fixing up my deck, planting a container garden, creating my own DIY art projects. These activities make me feel good about myself, but they take a lot out of me. I've had to learn to work within the strict limits set by my body. If I exceed those limits (like toting 8 bags of potting soil from the car to the back yard), I am totally worthless the next day. To paraphrase the immortal line from Top Gun, I have to make sure my brain isn't writing checks that my body can't cash.

The Myalgia Mommies would love to hear how you are living AROUND your chronic pain. Please leave us a comment on our blog site or feel free to email us at myalgiamommies@gmail.com. You can also friend the Myalgia Mommies on Facebook. - cvw

Wednesday, April 18, 2012

Welcome All Myalgia Mommies

This morning when I woke up, I was as cranky as a toddler with the runs. My neck was stiff.  My back ached. As I threw my legs over the side of the bed, my joints cricked and cracked like dry twigs. A geriatric groan escaped my lips as I maneuvered myself out of bed. It wasn't graceful, and it wasn't pretty. And I'll admit I might have been a tad bit gruff when I hobbled into my son's room and ordered him to get out of bed and get ready for school.

What can I say? I was pissed - pissed that I can't roll out of bed any more with the finesse of an Olympic gymnast (even a retired Olympic gymnast) - pissed that my thighs shake and my knees buckle when I walk down stairs - pissed that at the ripe young age of 41, my body has betrayed me, and I now take more pills than my grandfather used to take.

Somehow, in the last five months, I have become a member of a very elite group - the Myalgia Mommies. Whether it be fibromyalgia, rheumatoid arthritis, lupus or any other type of chronic physical discomfort, Myalgia Mommies are women joined together by a common thread - we are all parenting through the pain.


I must confess that I'm not sure what I would do without a very special group of friends and family to help me deal with my new reality. Myalgia Mommies wants to provide the same sense of support for those of you dealing with your own realities. We would love to hear from you. We want to know about your greatest successes - and your greatest failures.  Tell us about how you deal with parenting through the pain. Leave us a comment on our blog site or email us at myalgiamommies@gmail.com. We're looking forward to meeting you! -cvw

Thursday, April 5, 2012

Myalgia Mommies Need a (Spring) Break

We Myalgia Mommies are so proud of ourselves for surviving the first half of what is one of the most challenging weeks of the year - Spring Break! Despite rolling out of bed every morning feeling like our bones are made of lead, we think we've managed to provide our kids with a pretty nice little stay-cation. We've organized Easter crafts, planted sunny Spring flowers and caught fish in a local pond. But perhaps our greatest achievement so far was a road trip to a tiny gem hidden off the back roads near Mooresville, NC. If you are a Myalgia Mommy living near Charlotte, NC, consider yourself lucky that you are within thirty minutes of the Lazy 5 Ranch, a small, drive-thru animal park filled with exotic animals that you can feed from the safety of your car. Our kids range in age from thirteen years to seven months, but all the kids LOVED the Lazy 5. Feeding ostriches and emus, Watusi cattle and zebu, petting llamas and oryx, and dodging the tongues of Scotch Highland cattle had them screaming with laughter. The food was flying but so was the fun. Around each bend was a new species that the kids tried to lure to their car window with the promise of a delicious treat, and most of the animals were happy to oblige. Those that didn't were so fun to watch that we didn't mind that the zebras and giraffes turned up their noses at our offerings. Best of all, since most of the animal park is drive-thru, our Myalgia Mommy bodies were spared the wear and tear of a traditional zoo. Granted, when you factor in our two and a half hour drive, it was still a long day for everyone, but we Myalgia Mommies feel it was totally worth it. If you are interested, check out the Lazy 5 at this link: http://www.lazy5ranch.com/. We'd love to hear about your experiences, or how other Myalgia Mommies occupy their kids during Spring Break. Leave us a comment or email us at myalgiamommies@gmail.com. You can also follow us on Facebook.