Archive for the ‘Chronic Pain Treatment’ Category

Sisterhood of the World Bloggers Award

I am excited and honored to say that I have been nominated for the Sisterhood of the World Bloggers Award. There is such a depth of amazing writing out here in the blog-universe and I am thrilled to be apart of it.

Katie Michelle is a young, ambitious blogger with an understanding beyond her years. I have found such a kinship while reading her blog Connective Tissue Disorder: My Journey and her nomination for this award is an honor.

7 Things About Me

1. I have a BFA in Theatre – acting/directing and a minor in dance. I have had the unique opportunity to perform in zillions of productions.

2. I have an MA in Nonprofit Business Management and currently work as a Marketing Communications Specialist.

3. I am constantly foraging for new ideas and stories. I bore very quickly. Therefore, I cannot stand the quiet – I have an addiction to NPR, television, blogs and books.

4. When I was 5 I wanted to be a nurse when I grew-up because I love band aids, when I discovered I was terrified of blood I decided I would be a ballet dancing writer. I’ve come pretty damn close.

5. I am Unitarian Universalist; I am driven by a belief in the inherent worth and dignity of every person.

6. I am a vegetarian who would indulge in espresso, sea-salted chocolate, pizza, pumpkin pie and wine every day…and really, why not?

7. I have a distinctive laugh and love to use it. My husband, daughters and dear friends give me reason to laugh everyday and I am forever in their debt.

My nominations for the Sisterhood of the World Bloggers Award:

I am amazed by the scope, honesty and humor I find in my favorite blogs every day. For the next few days I am going to share some of my favorites with you.

Nomination #1:

Chronic Pain and Spirituality – Carol D. Marsh
The depth of this blog is unprecedented. It is a complex look at life with chronic pain. It has given me hours of spiritual exploration and reflection. There is nothing like it and I am grateful to Carol for sharing it.

Nomination #2:

Not from Around Here
Sometimes escape is the best medicine, even if you just imagine being somewhere else. An old friend writes this wonderful blog about her experiences as an American living in the UK. She has the incredible ability to find the humor in it all, and a talent for making you feel like you were right there with her.

Nomination #3

Living Life as I see Fit
The most recent post on this blog reminded me why I really enjoy this blog about living with RA & Fibro. It is a wonderful thing to see the purposeful progression of a life, despite chronic illness.

Nomination #4

A beautiful friend and woman of the cloth writes this wise, genuine poetry blog. Perfect writing for times of reflection. I would like to be a bit like this woman when I grow-up.

Nomination #5

Bucket List Publications
This blog constantly inspires me to imagine new adventures. It is a great place to forget your day-to-day struggles and to really consider what you want to do in this one precious life.

Award rules:
  • Recipients need to thank the giver.
  • Post 7 things about yourself.
  • Pass the award onto 7 other bloggers of your choice and let them know that they’ve been nominated.
  • Include the logo of the award in a post or on your blog.

Drug Babies

Can you watch this video without grinding your teeth? I can’t watch even 5 seconds of it, and my daughter was one bad Doctor away from being a drug baby herself. I’m not going to rehash the details here, if you are new to my blog, please check out the early story starting here. However, I never mentioned that the first Doctor I discussed my potential pregnancy with told me to go ahead, to get pregnant on my narcotics and to stay on them, because it would be too stressful to quit. This advice didn’t sit well with me so I moved on to a new pain Doctor who was willing to help me deliver a drug-free baby. I say a little prayer of gratitude every time I see one of these recent stories about the upsurge in babies born addicted to pain medications.

Having been through a pain-related pregnancy, I have an intimate understanding of the difference between someone trying to have a family while managing a chronic disease, and someone stealing Vicodin to feed their addiction during pregnancy  (I am not equipped to discuss the disease of addiction here today, but I know it is a monster) . I have had the privilege of befriending many moms who have fought tooth and nail to deliver healthy babies, pain be damned. I am deeply worried that the general public, and their trusted reporters, do not/will not understand the difference. I am torn to pieces every time I see one of the recent reports, a bit of me wishing the story would disappear from our screens as quickly as possible.

I fear this current scrutiny will not benefit moms like me. In this black and white world, our gray-area-pregnancies are hard to explain. We tend to hang-out in the shadows, in our private chat groups, or the safe harbor of our homes. Doctors aren’t sure what to do with us, there is no research, so I don’t expect the average person to understand how I managed my pregnancy. I am worried that, after seeing this damning news coverage, the average person will feel they can tell me how to manage a pregnancy.

I guess I just wish I saw myself somewhere in the reporting of this story, some information about how moms like me use their meds responsibly, fighting the lack of support around every corner. Something deeper about why some of these babies are suffering as a direct result of the inconsistencies in the world of  pain management. If this story was as black-and-white as it seems, my daughter would not have been one Doctor away from a tortured welcome into this world. So please, take a moment before condemning every mom-to-be on pain medications, there is another story, even if I am the only one telling it.

* Please feel more than free to share your story, if you are so inclined. 

Running Renegade

From the window of my cool, air-conditioned car I have found a new inspiration this week. Every morning I’ve spotted an 80-something (I’m guessing) man in his grey trousers, button-up shirt and trainers. He is holding his crutch type walking aids under one arm, and he is jogging. It is so damn hot I can’t sit outside in the soup and he is jogging. It makes me wonder if his caregivers know he is out there, you get the distinct feeling that he is not suppose to be running.

I am starting to get the distinct feeling that I am not suppose to be working. The medications and treatments one receives for chronic pain make you extremely tired, sometime dizzy/foggy and often a little seasick. I have yet to find an option that reduces the pain without some level of side effect – which are not helpful for productivity. In short: the medical world cannot support me as a working patient.

Solution #2 is to adjust my work to accommodate my disability, it’s what the ADA is for, right? Without making too much trouble for myself, I will say that this is far more difficult than I imagined. The fight for accommodation (10 hours/week of telecommuting in my case) has been maddening. In short: the business world is not interested in accommodating for my chronic pain and I can’t afford the lawyers.

I’ve started a new job this week, one that promises to be an exciting challenge for me professionally. It is with a larger organization that has fantastic health insurance, vacation time and an actual HR department. I am training long days at my desk and, although I am in terrible pain, I am hopeful that this will evolve into a working life I can manage. I feel like I am keeping a secret from my management, I’m not suppose to be working. But if my jogging friend can set his sights for the end of the block, I can certainly make it through a Friday.

The Lunatic at the Counter, or why you saw me crying at Target

Refilling my non-pain related medication:

  • My pharmacy registers it in their handy refill program, I get a $5 gift card.
  • My prescription is ready 2 weeks before I actually need it.
  • NOTE: in this example I never look like a drug addicted lunatic.

Refilling my pain medication:

  • Submit a monthly email request to my Doctor on Monday, a process she insists on.
  • Call the office 3 days later, after receiving no response to my email.
  • Go to the office on Thursday, the day my prescription runs out, and refuse to leave until I get my paper.
  • Take order to the pharmacy, wait 30 minutes to discover that the insurance requires something else of my Doctor. It’s after 5pm (the only time a working mom has to hang around Target, bribing her daughters with trips to the toy isles).
  • I am now completely out of the medication that I need to control my pain (because they track it that closely), medication I have taken for years without incident (I’ve never lost even a pill).
  • I beg the pharmacist for mercy, to which she nods apologetically, promises to call my Doc immediately in the AM and wishes me luck with that withdrawal.
  • I cry like a crazed lunatic as I push my kids out of the store in that damn squeaky cart.
  • The migraine I wake-up with in the morning drives me immediately to the coffee shop and then the pharmacy to remind them to call my Doc. They promise to call my cell the second the refill comes in.
  • I drag my ass to work in some pretty serious pain. Call my Doctors office and beg them to fix the prescription before the end of the day.
  • It is Friday afternoon and I am still waiting – the weekend threatening.
  • In two hours I will have to leave work early and visit my Doctors office in order to stand at the counter until they find someone to fix the damn prescription. Mustering the crazy will not be hard because this headache would make anyone a little edgy.
  • If I cannot get the medication fixed, I will end up in the emergency room this weekend and they will stamp a big red drug seeker on my chart.

This is not an unusual week for me, this mess happens all of the time for one reason or another. However, it is endlessly frustrating, degrading and unhealthy. I understand that there are systems in place to protect the drug abuser, but why does it have to create such hardship for those of us just trying to have a decent quality of life? The entire system lacks any sense of empathy for the patient, the person it is supposed to be serving. And, I pay $1,700/month for this amazing service.

Wish me luck, I’m going to need it.

A Wash.

Please forgive my blogger absenteeism; I’ve had 2 wires wrapped around my spine and sutchered to my back. For some reason (because my Doc told me so) I thought that this Neuro-stimulator trial would be easy-peasy. I am an idiot. You’ll be shocked to hear that it hurts like hell to have wires inserted into your body and sewn to you back (I’m a total idiot). Then you wander around for 10 days with all of the exposed stuff taped to your body and you pray you don’t accidentally yank it out. Oh, and you are supposed to be able to discern if it helps your chronic pain, which becomes really freaking hard to separate from the new throbbing in your back.

The trouble seems to be that most of my Doc’s patients are home on disability. My nurse showed visible shock when I told her that I would need to continue to go to my office and care for my daughters during the 10 day trial. Then she sort of gulped, wished me good luck and told me not to lift anything bigger than 5 lbs. Yup, my baby is 16 lbs. This was not going to be the trial I was sold on.

So what does one do when she comes home from a procedure that has made it problematic to care for herself, much less her family? She calls in the team, as much as she wants to be independent, she sucks it up and asks for help. I had a lovely wedding, beautiful baby showers, even a surprise 30th birthday party, but I have never been truly stunned by friendship. Consider me astonished. There was food on my door step every night, childcare whenever I inquired and beautiful trinkets delivered to cheer me. My husband took on the herculean task of handling me (my incessant whining) and our girls from 5 am to way-past-sane pm without blinking. I am blessed beyond reason with the sort of people who just do: they didn’t ask what I needed, they just knew.  They have taught me so much.

The week sucked. I managed to work and my family came out OK (if not better fed) on the other side. The trial failed. I’m trying to wrap my brain around the next one. But for now, I’m enjoying the fact that I can bend at the waist, shower and love-up my little ones whenever I wish. I’m digging out and trying to find the energy to fight again. And, I am awash in gratitude for the love I’ve been given.

Bionic Mama

In one of my favorite childhood pictures I am standing, posed with my fists on my hips, in my Wonder Woman underoos. I have band-aids covering battle wounds on both knees and I am grinning ear to ear. I wanted so badly to be Wonder Woman, but it looks like I’ll have to settle for the Bionic Woman. Amazing legs, but her costume is very disappointing.

I do not have Endometriosis, I also do not have Cancer…perspective is everything. I’m recovered from my surgery and ready for the next solution: implantable pain control.  There are two types: nerve stimulator and drug delivery. The main goal is to control the pain with significantly less medication. I will start a nerve stimulator trial at the end of the month. It basically tricks your brain, making the pain sensation a good one (I’ve had some unmentionable recommendations as to what the sensation might be). I’ll have a wire implanted at my pain site and carry around a super fancy fanny pack for 10 days (maybe the Doc will let me use my Kate Spade instead). If it works, we will implant the pacemaker sized contraption into my back side – Ta-da! Bionic Woman!

Nerve stimulators are not super successful with my type of pain, but insurance likes you to test them. If it doesn’t work, we will move on to the drug delivery system trial. If you imagine the daily medication I am taking now is equivalent to a gallon milk jug, this system would lower it to a teaspoon. It delivers the meds directly to the spine, so you get better results without the mental and digestive side-effects. Same set-up as the last: pacemaker size machine implanted in the backside and refilled with an injection. Implantation can be a bit more dangerous, as it involves the spine.

My last pain clinic did not offer this as an option, telling me I was destined to take narcotics for the rest of my life. I am thrilled to have found another way around the looming dead-end. It feels a little dramatic, all of the procedures and such. But, I remain hopeful and grateful to live in the land of Medtronic. Thinking I need to do some underoo shopping in preparation…

Work Sucks.

I like to think that I want every moment of energy to mean something, to be joyful, because they are so hard to come by. That I am somehow different or more observant in that way. But that is unlikely, it’s just me trying to make sense, to make something positive of this pain. Ultimately, it just comes down to the fact that the time I spend at my desk working is the most difficult time I put in throughout the week.

Every morning my six-year-old and one, if not both, of the dogs come bounding up the stairs to my loft bedroom and they JUMP on the bed to wake me. I lie there a minute, become conscious, and the first thing I think 5 of the 7 days a week is “How the hell am I going to get through the next 9 hours…I might not make it today” On the weekends I have more control, but the work days own me. I look at the clock and realize that I have no more time to think, I have to get rolling, cause I’m already late.

The other day I was giving my husband a kiss good-bye and he ask how I was feeling (it’s amazing that he still does this year after year) and I said, “I am in no shape to be going to work today.” The words fell out of my mouth and tears welled because of the truth they spoke. The truth I desperately ignore every morning. By the time I manage to get cleaned-up, lunch packed and kids kissed goodbye, I’ve already take 2 pain killers for the gnawing at my side.

There are many places to go from here:

  • Disability isn’t available for most pain diseases. We must work, no matter the pain we are in.
  • Pain is misunderstood; many managers and co-workers feel it is a disease of moral failure or poor tolerance.
  • Pain treatment is controversial and many workers are uncomfortable sharing their disease with their work place.
  • Nationally,  $297-$336 billion are lost annually are lost productivity due to chronic pain (based on days of work missed, hours of work lost, and lower wages).
  • Most managers would rather let someone go/force someone out than deal with their pain related needs. The pain becomes more important than the value that employee has to offer.

Really, I only have my own experience to speak of. If I had a hearing disability, my work would be required to make the accommodations I need to continue being as productive and comfortable as possible. I have stabbing pain many hours of the day and everyone in the office can ignore it completely. Pain affects more Americans than diabetes, heart disease and cancer combined. It’s time we start considering what that means for our workplace. I can guarantee that a flexible work schedule, or work from home options, would improve my productivity two-fold. I am passionate about the field in which I work and would love to be proud of the impact I make everyday.

And, perhaps more importantly, when my girl and her dogs come running up the stairs in the morning, I might spend a few moments thinking what a gift today is.

The Littlest Rabbit

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