Monday, June 27, 2016

#MHAM Theme Has Given Me a Boost of Inspiration

I've not been doing a great job of raising awareness this month. I do love the theme of Rule Your Headache Disorder - be actively engaged in your treatment. Yet I've struggled to come up with enough ways to talk about it. That might be due partly to the unusually high number of migraines I've had to contend with.

Even though I've said less on the topic and blogged much less than usual, I have been thinking a whole lot about how I might be able to take charge a little more in my own treatment. Over the past few days a plan has started to emerge around a confluence of recent events - I recently lost my primary care physician, I'm going to a D.O. for physical adjustments, I'm starting to get some pretty bothersome lower back pain and I'm still struggling to find the right medication to control my endometriosis without bothering my migraines.

The lower back pain is fairly new, like in the last 6 to 9 months. It started with some occasional sciatica and now (very recently) I have this constant discomfort in my lower back. I can't be certain what has caused this to suddenly become problematic. Perhaps it's just happening because of my age, perhaps because of all the pain postures I experiences, perhaps because of the adjustments I'm getting every month from the D.O. or maybe some magic combination of the three. Priority number one now needs to be finding a new PCP so I can figure out what is going on and get on top of this before things get worse. I also think I will have to insist that my D.O. stop doing one of the adjustments he does. The very last thing I need is another source of constant pain.

It's also time to start figuring out a new plan for my endometriosis. I think my migraines have been worse for the past month of so because of the latest hormone I've been taking. The good news about this latest treatment is that it seems to be helping the endometriosis but the bad news is that my migraines have been crazier than usual (and that's really saying something) and I've had terrible acne.

The real trouble here is a crisis of confidence in my OB/GYN. I like her a lot BUT since my endo has gotten out of hand over the last year some pretty big issues have come to light. It can be really hard to get a timely return call from her office. When trying to get a prescription for a new drug to try she accidentally prescribed me something with the exact same drug that I was clearly having a reaction to. I had an ultrasound done in her office but it took her 3 1/2 weeks to call me with the results. Then she told me I had polyps and proceed removing them but they turned out to just be chunks of endometrium sitting on my cervix - no surprise considering I was having some very heavy bleeding at the time. Seems to me, she should have checked to ensure it was attached before going in to remove it with a cutting tool.

Anyway, down the line I could need surgery and I'm just not sure I want my fragile body in her hands. Oh, but the very thought of trying to find a new GYN right now is overwhelming so I've decided to keep looking for medical solutions with the current doc but doing a great deal of research on my own about the drug options so we can choose what to try next with more care. Then when I figure things out with my back I'll start the search for someone new.

I guess if anything the theme this year has inspired me to reflect and then get moving on making these changes. After 10 years It's so easy to feel bogged down by doctor and drug fatigue or to get overwhelmed by the constant struggle to overcome the endless obstacles. I'm glad for the boost of inspiration.

Wednesday, June 22, 2016

Whimsy Wednesday

Okay, so I love watching the Bachelor and Bachelorette. What can I say, the show makes me laugh - so naturally I love it when people parody it. Jimmy Kimmel did a great job with this baby bachelorette.

Have a great day!!

Tuesday, June 21, 2016

Chronic Migraines Rule My Life

Rule Your Headache Disorder.

Sounds perfect. After all, I like to be in control. The trouble with chronic migraines is that even when I'm doing everything right, I never feel like I'm ruling over it. I work so hard to manage triggers, stick to my routine and keep my spirits up but migraines always find a way to show me who is the boss. Spoiler alert - it's not me.

Don't get me wrong, I've been able to bring my migraine frequency down from daily to an average of 18 per month with the help of a daily muscle relaxer. Plus, I've been able to increase my quality of life by practicing trigger management, pacing myself, doing regular gentle exercises and such. But that migraine is always waiting in the wings ready to jump out and take me down.

After a decade of fighting the good fight, I still don't feel like I rule over my chronic migraines. Quite the opposite, I actually feel like it rules my life. It shut down my career. It keeps me at home. It keeps me from being as active as I want to be. It keeps me from traveling. It demands I rest frequently. I can't plan to do more than a few things in a day, and never more than 1 thing if it involves leaving the house. I have to carefully tiptoe through life, trying not to anger the beast within. It has destroyed my recall. It has shaken my sense of self unrecognizable. It impacts my ability to socialize. My life revolves around my chronic migraines, fibromyalgia and endometriosis.

I hate it - everything about it.

I do what I can to strike a balance and live the best I can despite these unfortunate circumstances. Maybe one day in the future I will rule over my chronic migraines. Either way, I'll continue to fight for as much power over my conditions as I can get.

Tuesday, June 14, 2016

The Exhaustion of Being Actively Engaged

It's all so exhausting. All this being actively engaged in treating chronic migraines, not to mention the actual living with chronic pain. I don't know that people really understand just how exhausting chronic pain is, the toll it takes on us both physically and mentally. It's exhausting! Then you have to deal with the doctors, the appointments, the research, trying to explain things to family and friends, trying to manage all the things that you need and want to get done but never have enough energy to do, manging never really escapes it. It's exhausting!

Sometimes I just wish I could take a vacation from it all. Maybe a month with no pain and none of the constant management of my conditions, no medications or special accommodations. Sounds greedy, doesn't it? A whole month of getting stuff done and having fun without paying a price or having it ruined by pain, brain fog, nausea... Gosh, that would be so wonderful.

Okay, but the reality is that constant vigilance and effort is required. I need to stay actively engaged in my treatment or I'll be in worse shape than I'm in now. Yikes!

I just wish it wasn't all so exhausting.

Monday, June 6, 2016

7 Ways I'm Actively Involved in Non-Medical Treatment #MHAM

Being actively involved in our treatment goes far beyond what happens in a hospital or clinic. Obviously we need our doctors to help us explore and access preventative and rescue medications. Plus we need them for supplemental treatments such as physical therapy, chiropractic care and mental health assistance for coping. As much as we need to be actively involved in our medical care, we also need to be actively involved in all the other aspects of our treatment.

The good news is, it's easier to be actively involved in treatments that don't involve medical professionals. Over the years, I've actually found the things I do (and don't do) beyond my medications are very important to my quality of life. When you live a life of chronic pain, you don't have the luxury of living carelessly because suddenly everything you do has a very real consequence.

Being actively involved in making lifestyle choices is a critical part of treating a disease like chronic migraines. For me that means things like:
1. Staying hydrated. Bringing a bottle of water along when running errands.
2. Trying to get the right amount of rest - too much is just as bad as too little.
3. Pacing my activities so I don't overdo it and make my pain worse.
4. Avoiding my big triggers (sun, loud noises, big crowds, etc).
5. Regular gentle exercises as inactivity can make matters worse.
6. Looking after my mental and emotional well being. Sometimes we need to just do something because it's fun and social, even if we know it will trigger a migraine. Life can't stop completely.
7. Like me, many people who live with chronic migraines are also living with other comorbid diseases or conditions, which can impact each other. I've found managing my fibromyalgia and endometriosis are just as important to managing my chronic migraines as staying hydrated or avoiding triggers.

Allowing any of these to get out of hand would result in increased pain and, when you are only allowed to treat 9 migraines out of 18 a month, containing the pain as much as possible is critical.

Treatment is about much more than being a patient.

Wednesday, June 1, 2016

The Medical System Is Not Set Up to Allow Patients to be Actively Engaged in Treatment #MHAM

Wow, Migraine awareness month already! Okay, so it's actually about headache disorders but I like to focus on migraines because that's my deal.

The theme this year is: Rule Your Headache Disorder - be actively engaged in your treatment.

This is a wonderful theme as it is such an important part of optimizing our lives, yet it's complicate and multidimensional.

Today I'd like to talk a bit about being actively engaged in treatment. I put this in the category of "easier said than done." The medical system in this country is not set up to have patients actively engaged in their treatment. Doctors don't have time to even get the full story, let alone deal with all our questions and concerns. Plus their fragile, overly inflated egos certainly won't stand to be doubted or challenged by some stupid patient. What do we know about it anyway? We didn't go to medical school.

So what's a patient to do?

1. Get informed. Read everything you can about your condition(s). Try hard to stay up to date on the latest research and treatments. When it comes down to it, doctors can't stay up to date on every condition. Unless you are seeing a migraine specialist, you can't assume your doctor is going to know much about migraines and even less about chronic migraines.

2. If you can, seek treatment from a migraine specialist. Not a neurologist who treats people with migraines but someone who just treats headache disorders. I say "if you can" because not everyone has access to a migraine specialist. There are not nearly enough specialists to treat everyone with headache disorders in this country. I wasted years trying different medications at inadequate dosages from a neurologist, until I got a good migraine specialist. It makes a world of difference to have a knowledgeable doctor.

3. Don't settle for a doctor who clearly doesn't value your perspective as a patient. Is there anything more insulting than having your valid questions or concerns dismissed by your doctor? All the knowledge in the world doesn't do any good for any doctor who can't communicate with their patient. Any doctor worth a damn needs to be able to get their patients on board with the treatment plan. That won't happen if they can't or won't address our questions and concerns.

4. Don't be afraid to speak up and challenge what your doctor is telling you or doing. This is a hard thing to do. Doctors can be sensitive and defensive. But any doctor that gets that way is not a good doctor - and there are lots of them out there. It's our job as patients to ask lots of questions so we can understand what's going on. The better we understand what's going on, the better job we can do taking care of ourselves and communicating with everyone around us.

5. Keep looking. Doctor hunting is the worst!! Starting over time after time after time. The continued frustration and dehumanizing experience of dealing with bad doctors and/or bad support staff. But we all deserve better and the only way to get that is to keep looking. And looking. And looking - until we find someone great or at least someone who is good.

When it comes down to it, we have to deal with the very imperfect system we find ourselves currently living in. I think the main thing is to trust ourselves and never give up. We need to just do the best we can and keep on fighting for ourselves because nobody else is going to.