Wednesday, February 24, 2016

Monday, February 22, 2016

Jury Duty Anxiety

A few weeks back I got a summons for jury duty in the mail. I immediately felt a slight panic rise up in my stomach. The instructions are to show up in mid March and plan to spend 2 full days at the court house waiting to see if I'm needed on a jury.

Obviously nobody would choose me to actually be on a jury because of the brain fog, difficulty concentrating, exhaustion and inability to focus on anything while having a migraine attack. I'm not at all worried about being put on a jury. Sure, the previously healthy me would have been honored to serve, but the chronic pain ravaged me simply could NOT physically or mentally handle the task.

What I'm actually worried about is being required to sit for 8 straight hours, 2 days in a row at the court house waiting to be released from my duty. Everything about that would trigger either a fibro flare, a migraine or both. Not to mention how it would exasperate any existing pain I might arrive with.

-Sitting on a hard chair all day would trigger a fibro flare in my legs, arms and possibly my back too, plus a migraine
-Sitting in a room flooded by fluorescent lights all day would trigger a migraine
-Sitting in a crowded room all day with the din of a public place would trigger a migraine
-Not being able to maintain my routine will trigger a migraine
-What if someone is wearing too much perfume/cologne or they reek of cigarettes? Talk about a migraine trigger.
-Being forced to get up, shower, pull myself together, pack a lunch, commute 20 miles away during rush hour to the court house, park, walk around the construction outside and be checked in by 8:00am in would not only trigger a migraine and a fibro flare but it would also render me useless for the rest of the day. I would be so exhausted and in so much pain I wouldn't be able to do anything. AND worst of all, I wouldn't be able to take any measures to alleviate my pain. 

It is downright cruel to force someone to spend the entire day in a painful hell, surrounded by triggers and deprived any sort of relief or comfort. Even on my best days I can't spend all day out doing anything. When I go out into the world it's for a few hours because even that will exhaust me physically and mentally and often will trigger a migraine or fibro flare. Then I need to be able to retreat back to my home, where I can eliminate light, lay my body on the soft sofa, lay my head on a soft pillow, rest, take pills, eat and drink. 

Now the paperwork I received did include a form that they needed me to fill out and mail to them, which I did that same day. I checked the box that says I'm not qualified because of a physical or mental condition and I filled up the 3 lines they provided for explanation. But that was 3 weeks ago and I still haven't heard back. The form didn't provide a timeline but did say I would hear back if they needed more information or if I was excused. But with less than 3 weeks until the day my duty begins I'm starting to get nervous. I need them to take this seriously but, as we all know, these invisible illnesses are not well understood. And most people don't understand the difference between migraine and chronic migraines.

If I don't hear back from them by Wednesday I think I'll call the clerk and just see what's going on. 

Have any of you ever had to deal with this? How did it turn out?

Wednesday, February 17, 2016

Whimsy Wednesday: Chihuahua Puppy and Baby Goats

Baby animals being cute together - Just to brighten your Wednesday.

Have a great day!!!

Tuesday, February 16, 2016

The Price We Pay For Having Fun

Hubby and I had my cousin and his fiance over to the house for dinner on Saturday. With their wedding coming up in about 6 weeks I wanted to get a sense of their post wedding plans in hopes of confirming a gift idea I had. 

Finding a day that worked turned out to be a little tricky as they are busy young adults, but we finally did. As the weekend drew close I was fighting an especially bad, hard to manage migraine. I was fairly certain, right up until that morning, that we would have to cancel. Just in the nick of time things turned around enough that I felt up to having the company. I even spent the entire day hiding from the sun in hopes of avoiding retriggering the migraine beast. 

The evening was a success. They are very nice people and an adorable couple. Conversation was easy and we had some good laughs. 

I woke up the next morning (Sunday) feeling hung over, despite not having a drop of alcohol the night before. My head was pounding, my whole body was sore, my eyes were bleary and I was exhausted. Unable to shake it, I spend the entire day in this state. The drapes stayed closed and the lights stayed low. Basically, I didn't do anything all day besides rest. 

Any time I want to do something outside of my usual routine I must make time to prepare a day or two in advance and then make time to recover a day or two after. Still, the time spent preparing for and recovering from a social engagement is totally worth it. As important as my routine is to managing my chronic migraines and fibromyalgia, it's equally important to my mental and emotional health to get out and interact with the world from time to time. I enjoy getting out of my lounge clothes and putting on a little make-up and just doing something fun. 

I'm glad I haven't had to entirely give up making new memories and having a good time just because I'm living with chronic pain. 

Thursday, February 11, 2016

The Very Nature of the Caucus is Discriminatory

With the presidential primary season gearing up I've been thinking about the caucus system that some states use instead of a simple primary vote. I actually come from one of these states - Minnesota. I was thinking just this week how glad I am that Missouri doesn't do that because I honestly don't think I would be able to participate in the process because of my chronic migraines. Not only is it unlikely I would feel well enough, but I certainly have no interest in spending what little precious time and energy I have available gathering with strangers to talk politics. The physical toll would be too great.

When you really think about it, the caucus system is actually discriminatory.

I remember participating in a caucus back when John Kerry was running against Bush. My caucus location was at a local junior high school. We were divided up into small groups in various classrooms according to our neighborhood. Our small group talked about the candidates and we voted for who we wanted our delegate(s) to support. Then I remember we spent a bunch of time figuring out who would be the delegate from our area that we sent to actually cast the vote. It was a longer night than I thought it would be but I didn't mind the process at the time.

Since that election, chronic pain has settled into my life AND I've left Minnesota. Then I begun thinking about how hard it must be for all the people with physical or mental barriers to get their vote counted in the caucus states.

The very nature of the caucus is discriminatory because it requires everyone to show up at a specific time, interact with strangers and stay for a while. What if you are really shy, an introvert or on the autism spectrum? What if you can't get off of work during that specific time? What if you just can't spend 1-2 hours at the caucus? What if you are in terrible pain and can't put up with the din or the bright lights? What if you don't have a ride and public transportation doesn't run that late at night? I can think of lots of scenarios that would prevent people from being able to vote in a caucus and that's not okay.

The primary process is far superior because it's an all day affair that protects your privacy and doesn't contain a lengthy social component. Far more people would be willing and able to participate in the political process if not for all the caucus barriers. Ultimately, isn't that what we want?

As well intentioned and lofty as the concept of the caucus is, I can't help but think that it's time we do away with this system in favor of a more inclusive process that reflects our modern understanding of the challenges people face in our society. At the very least, I would like to see caucus states provide the option of a simple primary vote in addition to the caucus gatherings.

Wednesday, February 10, 2016

Whimsy Wednesday - Bern Your Enthusiasm

As a big fan of Curb Your Enthusiasm and SNL, you know I loved the Bernie Sanders/Curb mash up that SNL did last weekend. Here it is, in case you missed it.

Have a great day!!

Monday, February 8, 2016

I Want My Life To Be About More Than My Pain

So here's the thing- I want my life to be about more than my pain. I don't want to just be known as that sick woman. I don't want to be consumed day in and day out with pills, pain, doctors and trigger management. I feel like it's important to have goals that I'm working towards. After all, I'm still the same layered person I was before chronic pain. I still have a variety of interests and issues that I'm passionate about and even dreams for the future.

So here's the problem - I AM living with chronic pain. In fact I'm living with 3 chronic pain conditions. There is no pause button I can push while I pursue other things. No way to get a vacation from dealing with the daily chores of managing them. I have to take my pills and manage the prescriptions. I have to manage my activity level, being careful not to overdo it on a day when my pain is low and pushing myself to still do things even when my pain is high. Everything I want to do, outside of my normal routine, has to be carefully planned to limit my exposure to triggers and the extent of pain I experience after.

So often it just feels like my whole life revolves around my pain. I know this is how it has to be but I do wish I could find a way to let more things in. Turns out chronic pain is a very time consuming business. Actually, it's also a very exhausting business. Making matters worse, often it can look a lot like nothing at all.

As I sit here thinking about the path I'm on right now I can't help but think there is something universal about what I'm feeling. I can imagine healthy women my age struggling with the same thing - a life that seems to be defined by a circumstance to the exclusion of a more complex and whole self. Maybe some women my age have focused on their careers and feel like they may have missed out on family stuff or other interests. Maybe some women my age find themselves feeling like they have started to lose their identity to motherhood.

Maybe all I, or any of us, can do is to try to live as balanced a life as we can given the parameters of our reality.

I guess, in some way, I've been able to still set goals and work toward them. I always have projects that I'm working on. I crochet, I sew, I bake, I attempt to grow stuff in containers during the summer... These are all great distraction from the pain but these are not the things I imagined I would be doing at my age.

Friday, February 5, 2016

The New Doctor is a Dream

I saw the new PCP on Wednesday morning. The entire experience was the polar opposite of what was happening at my last doctor's office.

To start with the enviornment was much nicer. It was clean and modern. The woman at the desk and the nurses and assistants in the halls were pleasant, they communicated very well and they knew what they were doing. None of them had that defeated, I-hate-my-job-I-hate-my-life-and-I'm-annoyed-that-you-are-here attitude.

Then there was the doctor. She started off by shaking my hand, introducing herself, welcoming me to her practice and letting me know that she hopes I have a great experience. She went on to tell me about the practice, how the on-call system works, their policy on communicating test results and again weloming me. We then talked about my 3 main health issues and what I've done and am doing to manage my conditions.

She wasn't typing away the entire time I was talking. She simply sat there listening and responding. Every now and then she would want to record something and then she would let me know what she was doing and we would pause while that happened. She didn't want to miss out on what I was saying.

She told me that her mother had migraines and how she got to witness just how debilitating an attack can be. She made sure I knew that if I was having trouble managing an attack I could feel free to call the office and she could help me abort it.

I told her about how helpful the D.O. manipulations were for my fibromyalgia and how I was actually a little concerned that he would retire and my progress would backslide. She said that if I could find out from him exactly what he was doing she would call around and find someone to do those same things.

I left there feeling blown away. Not only was this experience far superior to my last doctor, it was better than I've seen it done anywhere. I've never felt such relief after an appoitnment. I truly feel like she will be a great partner no matter what comes up down the road. Even though I've had some good doctors in the past, I've never felt like I've had a partnership before. It may have taken me 4 1/2 years of living here to find her, but I'm so glad I did.

Wednesday, February 3, 2016

Whimsy Wednesday

Missing my SNL this past weekend, I wanted to share the cold open with Tina Fey as Palin from a couple weeks ago.

Have a great day!!

Tuesday, February 2, 2016

An Update on my Progress after 15 Months Under the Care of a D.O.

I've been going to my D.O. regularly for more than a year now (15 months). I last blogged about how things were progressing last March after 5 months of regular visits. Since then I've continued to get monthly adjustments and continued to see real benefits.

My goals, always, is to improve the quality of my life. That includes managing my chronic migraines, fibromyalgia, endometreosis and the weight loss that has resulted from years of struggling with these issues. Here is the break-down of how these regular D.O. appointments have impacted my quality of life.

Chronic Migraines: Well, as expected he has not been able to impact the frequency or severity of my migraines. While I would have welcomed any improvement on either front, I never expected it to happened. Chronic migraines are very complex and not likely to respond to a single intervention like this. That being said, I do hold onto hope that as preventative medications, specifically designed for migraines, begin to hit the market in the years ahead that I will be a better position to respond to them because of what is being done both with my D.O. and with other lifestyle chances I've made.

Fibromyalgia: This is where I've seen the most improvement. The regular attention to the physical structure of my body has cut down on the frequency and severity of fibro flares. These days, I rarely wake up feeling like I was beat up over night. Plus, I have a little more flexibility in how I can move and what I can do before triggering a flare. I'm not cured but these small things have a real impact on my quality of life.

Endometreosis: This isn't an area for the D.O. to help with. Thankfully I've been able to manage it pretty well with medication for the past 3 months or so.

Efforts to gain weight: The D.O. had me trying a few different kinds of enzymes and probiotics to help me turn my weight around. I think it's safe to say that he helped me jump start my weight gain but ultimately I didn't do well on anything he gave me. I have added 2 - 3 Clif Bars to my daily diet. Between that and the decrease in fibro pain, which has helped me to increase the calories I consume, I've been able to gain weight, about 10 pounds. I gained regularly for a few months and have since plateaued. I'm thrilled to have put on as much as I have and that I've been able to maintain what I've gained, but I'm disappointed that the gaining has stopped.

To sum up: The benefits are undeniable. My quality of life has improved as a direct result of these regular visits with my D.O. I've had moments when I wonder if I can back off and start going every 6 or 8 weeks instead. But I don't want to mess with the success I've had so I keep going every 4 weeks. I'm actually starting to feel a dependency on these appointments, which has started to cause me some worry. What happens when he retires? He is the only D.O. in the area who does what he does. He is definitely older than me (thought I'm not sure of his exact age) so it's very unlikely he will be able to treat me for the rest of my life. Then what? I would hate to backslide to how things were before.