Archive for the ‘Pain Medication’ Category

Good rain

Playing in the rain

I’ll take the blame for this absolutely ridiculous blizzard in April weather (sometimes a bit of crazy narcissism is just what the Doctor ordered). I have been waiting, hold-up in my little house, hoping for a seismic change. Old man winter seems to be sympathetic to my plight, dumping slushy misery in solidarity. However, I am forecasting a change in the weather this week. My pain pump implant surgery is Wednesday and it is about time for spring to sprung.

These last couple of weeks, as I’ve been wrapping my brain around this change, a Storyhill song has been rolling though my mind. It has been reminding me of that smell of rain on the hot pavement, when it starts to fall after a steamy summer day.

It was a good rain
The kind that you wait for
And it’s not like it’s been too hot
It’s just that we’ve been waiting
And everything is different
Now that it’s raining

Everything is about to be different. I will soon be taking my girls puddle jumping in the spring rain. I’m going to need all of the finger-crossing goodwill I can get, so please keep me in your thoughts and prayers. Much love and so much gratitude.

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Write it on your heart that every day is the best day of the year.

I have always unabashedly loved February. When I was a kid, hearts were my thing, had bunches of them hanging all heart-shaped-snowover my pink bedroom. Loving You Barbie was living in my plastic penthouse suite and every notebook I owned was covered in my original heart renderings. I’ve found myself lingering on memories of childhood happiness lately, because I see so much of it in my girls, and because sometimes I need a visit to that happy heart-filled place.

In year’s to come, this February might be the one I look back on for a moment of sweet contentment. I’ve had a breakthrough of sorts and I am tentatively hopeful. Last week I bit the bullet and did a trial for a pain pump, basically a pacemaker for chronic pain disease. My Doctor placed a catheter in my spine and then pumped pain medication directly into the spinal fluid. I spent the next two hours trying to piss-off my pain and, in the end, it only reached a level 2 of 10. Typically it would have been a 6.

Sitting in the recovery room felt like I was a attending a revival. The girl next to me kept saying “I can lift my arm! I haven’t done that in years!” It was truly amazing. The trial usually lasts for two days, but I got a spinal headache on my way out the first day, and my Doc had to pull the catheter. However, the first day was a success and we are going to move forward with the actual implant.

Wariness has never been my thing, I’m not good at it. So, while I wait for my insurance to move this process along, I am going to buy those heart push point pencils (remember those??) I’ve been eyeing at Target, I’m going to paint my toes pink and I’m going to eat too many gummy, sugar filled things. Hope you all treat your inner child to an unabashed Valentines day.

Write it on your heart that every day is the best day of the year. – Ralph Waldo Emerson

Hitched for the Holidays

This week, I am the leading lady in a Lifetime movie plot – it would be a Hallmark Hall of Fame, but their charactersfala are a little too naive for this storyline.

Our first daughter was born just before Christmas; during those hazy midnight nursing sessions, my husband and I discovered Fa-la-la-al-Lifetime.  It beats infomercials and Public Television Membership Week hands down.  These movies play 24/7 throughout the 6 weeks before Christmas and we have seen almost every one.  There are 3 plot lines and the best ones feature actors from my teenage years (I never miss anything starring the kids from 90210).

One of my favorite story lines, and the one I am playing in this year, is the one where a beautiful single person (pretending to be undesirable) is tired of hearing their mom complain about their lack of spouse and they hire a companion for the family holiday festivities.  I don’t want to spoil the end for you, so don’t’ read on if you prefer the suspense. They fall in love with their partner-for-hire and kiss under the mistletoe.

So, as you might have guessed, my version is a little different: my blind date for the holidays is a new miracle medication meant to sooth an ailing digestive system (I already have a handsome man friend). Scorned in the past, I was not hopeful. However, the last few good days have me skipping towards the mistletoe.  On my new pancreatic enzymes, I have been eating without regret for the first time in 20 years. Cue make-over montage, I feel like dancing!

These movies (and med trials) usually have a bit of drama after that first longing-look, so I am waiting for the other Louboutin to drop. But I am hopeful, and isn’t that what this cheesy season is all about?

I hope Santa brings you and yours everything you’ve been wishing for, including a made-for-TV happily ever after.

 

At Least it isn’t Cancer

Friend: How is all of your health stuff going, have they figured it out yet?Red 3D Cells

Me: I explain how I am chasing another diagnosis with new tests, trying to sound positive about the potential of having my pancreas removed, or some other super-fun procedure.

Friend: Well, at least it isn’t cancer!

How does one respond to that? Yes, cancer is a monster of a disease that can ultimately kill you. No, I do not wish chemo on anyone. And, yes, the people I know who have fought or are fighting that demon are super-heroes in my eyes. I realize that this friend is trying to make me (or them-self) feel better about my completely depressing health situation; it comes from a good place. But I have no idea how to respond.

If I say, “Yes! Cancer would really suck!” we can all just move the conversation along to what we are doing for the holidays, or something equally pleasant. And that is what I usually do, because I am not a masochist and I’d like to be invited to lunch again. But this quietly denies the power of my own disease in some way, the reality of my life. If it isn’t cancer, it really can’t be that grim, right?

There isn’t any purpose in playing compare the malady. Everyone is fighting his or her own great battle. But I would be lying if I said I haven’t considered whether or not I would trade my ailment for a cancer diagnosis, you can’t help it when people unfailingly reference it. Some days I do wish I could trade my near constant nausea and pain with a definitive chemo treatment. I wish I had an illness people had heard of, had a healthy respect for, because I am weary of trying to explain it in a way that fits our world’s short attention span. I face the fact that this thing might slay me everyday. Even worse, it might just suck every last bit of marrow from my miraculous life over the next 40 years. And, ironically, it often causes the big C.

I actually have very little interest in mulling over every gory detail at lunch. I want to laugh and talk about my kids. I deeply appreciate your concerned inquiries and it really is just enough that you asked, that you recognized the darkness for a moment. Please know, that simple act is enough, you don’t have say something to make me feel better. I can see, just by looking into your eyes, that you wish it were so.

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.

The Littlest Rabbit

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