Monday, February 25, 2013

Too Early for Cake

The most important aspect to pain management in all chronic pain is sleep management.
****A blog about sleep deprivation, written by a really tired woman. Please lower expectations!!!****

Children are disruptive to sleep.

I think this is what separates Myalgia Mommies from other women who also suffer from chronic pain.

We added a dose of kids. So we aren't in control of "sleep management" our kids choose our sleep schedules. This weekend my toddler is treating us to a cold and waking up at 5am (instead of her usual 6:30, which is still pretty harsh) we are in boarding school or Guantanamo. I'm not sure yet. I do know this much coffee so early is not good for me and I am going to switch to yerba matte soon.

Yesterday I made a bundt cake. My older daughter decorated it and we came up with a wonderful litany of reasons to have a cake. I ate way too much and went to sleep with the baby having been up on a marathon of taking care of a sick family since 5 am. There is a special level of care taking that a mother gives. We add a dose of our own neurosis. I sit and pace, wondering if I can worry her symptoms into the deadly and rare variant of croup that kills children in the mountains of Eastern Europe.  She has a lingering common cold, but I am a creative and loving mother. Also, I apply menthol vapor rub with the perfect touch.

This morning the toddler starting demanding "Pie" or The Cake at 5:45 before we were able to make coffee. I've started a strange conversation on twitter at dawn.

My husband and I have never been morning people. When we met we we both law students. In Washington, DC in the late 90's we both went to Law School in the Evenings because we were having too much fun working as attorneys during the day. We put in 70 hour weeks and did not rise on the weekends until noon.

Both our daughters are those shiny, sunlight, bubbling creatures that alight with the dawn. I have no idea how this happened. The last decade has been a struggle and an evolution. Now we wake up early. Our girls outshine us in the mornings but we have coffee and catch up to them by 8ish. Comparing our situation to other parents, I think it is a common affliction.

None of this changes the fact that I am not in control of the sleep pattern my body wants this week.

So, I'm getting more coffee. Today we are having cake with second breakfast.

Cheers,
ALJ

Friday, February 22, 2013

Obnoxious Opiates and Toddler Issues

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

Friday, February 15, 2013

Botox for inner Beauty and Perfection

The day before Valentines Day I miraculously was able to get a same day appointment with my neurologist. She is basically my primary care doctor, she works for a chronic pain and headache clinic, has a young daughter and I love her.

Since the appointment was made with only a few hours to get ready I brought my baby in with me. No time to find a sitter, I'm new in town. Honestly. I just don't trust many other people with my children. Dr. Alice (my pseudonym since she looks like Heather Graham or a grown up Alice in Wonderland❤) counseled me through my pregnancy, nursing, weaning and has heard about the babe at each step. She was charmed by her in person.

My Valentines surprise treatment was one that used to be an expensive and elaborate process. Now it is common practice and this week I was able to get injections to help my TMJ too.(I honestly don't know what TMJ stands for- I call it terrible mouth joint!) Without even getting undressed, while the nurse distracted my babe, I was given over a dozen Botox injections. Hopefully, these injections at the trigger points will hold off all migraines for the next three months. The best Valentine possible.

The Botox leaves my forehead perfect and smooth. It will take a few days to take effect and I have a migraine until then. I love the irony that I get to look great while I am in pain. As I wait for it to work I will try to stay as peaceful as possible. If you read the classification Botox is a neurotoxin. I'm excited because my doctor injected a neurotoxin in the base of my skull. Pain makes us do desperate things.

We did have a lovely Valentines Day. This time of year many mental health problems rear and we have been spared. Instead our evening was truly perfect. As I put my roses in a vase, I whispered to my husband that we were making things difficult for whoever dates our daughters.

I hope this post finds everyone warm and well.

CVW your Valentine is in my car❤
Cheers,
ALJ

Tuesday, February 5, 2013

Valentines!💝❤

When I pulled out my Valentine card supply box from last year, I found a few stragglers we forgot to deliver. Checking the names on the left over cards did explain why some relationships were not as warm as I expected them to be this past year.

It was an omen.

I need to be better at reading signs. My older daughter is in Middle School and I could easily go this year without putting up up anything with a heart on it or noticing the seasonal decorations for February. Now my home is starting to show signs of a stationary store or a toddler classroom as I decorate to relieve the gray sky of winter out our windows.

My tradition of giving out little gifts and reminding people as often as possible how much I loved them began in my early teens with the death of a friend. When I learned suicide number rise at Valentines, I decided in my young mind that I could help the people I saw that day. So I carried a bag of candy. That was twenty years ago. Now I send some, and have a few choice clothing items to pull out. Mostly, I love chocolate and making people feel loved.

In my family 2012 was the year of new cousins so I set out to send everyone a Valentine. The new bad dog had other ideas. My oldest and I spent a productive weekend morning wrapping little gifts for her cousins and labeling bags to put into boxes ready for the mail. Our towers of addressed shipping boxes was impressive as we headed of to a party and waited for Monday.

He ate through the heavy packing material, a printed layer of valentine plastic, some tissue, and cardboard all to eat those silly conversation hearts. Our bad dog ate the Valentines. After my initial flurry of shopping, organizing, wrapping and packing I don't know if I have another round in me. Sadly, the kids I was sending gifts to are too little to use phones so I can't text or send an e-card.

When the baby knocks over her block tower, we build it again. In professional life I would try and problem solve around a puzzle until it was complete. In cold days of limited energy, my glitter and hearts have been defeated by a bad dog. This small defeat may be the difference between high functioning and not coping well with chronic pain. I'll leave a post script in the comments about the ultimate results.

On the dog behavior there is good new. We received a dog tax bill in the mail for a "Poppit" so we started calling our our new dog by his old name. We have been calling him half a dozen other things, my favorite being"Snarky" or Evil Eyes. Now he comes when you call. If you call an old dog by several new names he just gets confused and belligerent.

Still, he ate the Valentines.

Maybe next year.

I need more tea.

Cheers,
ALJ 💝❤🎁