Sunday, October 31, 2010

Rally Recovery

As soon as we heard about the Rally to Restore Sanity my husband and I thought it would be fun to go. We are both fans of The Daily Show and Colbert Report and of the clever thoughtful comedy they produce. And since moving to the DC area two years ago we have seen many big events on the National Mall highlighted on the news the way most of the country sees them. This is a place where history is made, people come together to express their views, protest, celebrate, etc and boy, wouldn't it be something to be a part of something like that?

Every time I would think that to myself it would immediately be followed by thoughts of the crushing crowds, the jammed Metro, the smokers and drinkers, the summer heat or winter chill or bright sunshine and I would come to the obvious conclusion that I don't want to see or do anything bad enough to put up with that kind of crap. But for some unknown reason I thought it might be fun to go see Stewart and Colbert and so did my husband.

So we got up early, packed lunches and a blanket, bundled up and drove to the Metro station. We counted ourselves lucky to be locals with Smarttrip Cards that allowed up to bypass the outrageously long lines to purchase fare cards. But that just got us underground, where the subway platforms were so packed people were waiting in line to even get on the escalator. This was not the furthest station out so by the time the trains arrived they were already packed with people. Fortunately most cars had at least one or two people getting off so at least a couple more people could get on. But you can imagine how slow this made the entire process.

I wanted to turn around after we saw train after train come and go with little to no progress being made to get on one. But my husband wanted to go and get pictures and some video and maybe put together something for his work. And I really wanted to be there for him as I often feel like my migraines limit our activities. So we managed to get on a train and were downtown in no time after that.

We walked through the huge crowd that had already formed and found a patch of grass to sit on and eat our lunches. The rally was to start at noon and it was about 11 ish when we arrived. People brought dog, and they weren't supposed to. People were smoking. People got drunk in advance as no alcohol was allowed. And the crowd just grew and grew and grew. By 12:30 we had spent a 1/2 hour listening to a band we didn't care for a loud group of drunk people were invading our space I asked my husband if he was having a good time. He said no so I told him I wasn't either so we packed it up and headed home.

As we were leaving we saw that the crowd was still streaming out of the station and down the sidewalk. The trains were still packed and the lines at the fare card machines were just as long. We were both SOOOO glad to be headed home and away from the madness downtown. I honestly don't know what we were thinking. I'm still in rally recovery mode.

We won't be making that kind of mistake again.

Friday, October 29, 2010

Ups & Downs

The ChronicBabe blog carnival topic right now is - We all fall down...and then we get right back up again. Kind of fitting today because I've been down for about a week now. From my present state of mind I feel like my chronic pain has pulled me down and occasionally I pull myself up out of the mire.

I know this is just a matter of perspective. A case of glass half empty or half full. When I'm down it feel like that's where I spend most of my time and boy is it difficult to claw up out of it. But once I am out of it I feel hopeful, energized and my glass is half full again.
Sometimes I wonder how much control I have over the ups and downs. It seems to be largely dictated by my level of pain and discomfort. But at the same time I believe that our thoughts and our state of mind are powerful influences in our lives. Plus I really want/need to have steps I can take when I'm down. Here are some of the things I do to try to pull myself up.
1. Make time to think about the many blessings I have. This really helps to put my mind in a thankful and more positive position.
2. Spend as much time as possible consuming comedy. Obviously, laughter is one of those really important things in life. I happen think it's actually critical in the life of someone with chornic pain - it is in mine. When I'm down that's when I need it most. Again, this is about putting my mind in a more positive position.
3. Try to have conversations with friends. I've lived far away from my support system almost the entire time I've struggled with this chronic pain. Sometimes just having a phone conversation or online chat with one of my friends back home can remind me that there is more to me than just the struggles of pain.
4. Pray and be still. I'm working on getting the hang of meditation so I can add that too.
5. Snuggle with my husband.
The way I see it, we don't have a choice. When we're down we have to find our way back up. What do you do to pull yourself up when you're down?

Thursday, October 28, 2010

Body, Why Won't You Just Cooperate

I'm so frustrated with my body right now. I wrote last month about the change in my cycle and subsequently my pattern. This month my cycle is even more out of control. I've been experiencing an extreme body wide discomfort. No matter what I can't get comfortable. In fact the discomfort has turned into a kind of pain.

I've also been experiencing internal overheating. How do I explain to you-all how unusual this is for me? You see, I don't have much personal insulation, especially after losing so much weight over the past 5 years of chronic pain. But even before that I've always been tall and skinny with very low blood pressure. I've always been the kind of gal who gets cold when it drops below 70 degrees. I've always kept my living space warm the way grandma likes it. I've been the kind of girl whose nose, hands and feet can get cold even on a hot summer day. But for the past few days I've been overheating to such a high degree that my normal activity is disrupted.

I don't know what's going on here but I do know this is not what I need right now. I'll be headed to my GYN at the end of December so I guess I'll just keep good records of what's going on and look forward to some answers and hopefully some relief at that time.

I'm so sick of this game - this waiting for appointments and hoping for relief that isn't often obtained. Body, why won't you just cooperate?

Tuesday, October 26, 2010

Looking For That Halloween Feeling

I've given myself permission today to do very little outside of let my neck and upper back regroup from the past week of muscle tensions. Okay so I've tried to do a couple of small things but mostly I'm just hanging, reading blogs and watching TV.

This time of doing very little has me thinking about how close we are to Halloween and how I'm not feeling it. Normally when the holiday season gets started I feel an excitement for each approaching holiday. With Halloween less than a week away I still haven't achieved that excitement.

Perhaps I spent so much time this month looking forward to our mountain getaway and the Rally to Restore Sanity (coming up on the 30th) that I just haven't had the chance to focus on Halloween. Maybe PT is the distraction. I don't know but I want that feeling. I want to think about costumes and decorations even though I won't be purchasing or decorating for Halloween this year. Maybe a trip to the store to look at these kinds of items would be enough to stir up some of the desired excitement.
Do you get excited about the holidays? What are you doing to celebrate Halloween?

Monday, October 25, 2010

PT Woes

I've been seeing my PT gals for almost 2 months now. I see a great PhD physical therapist with many years of experience with my kind of issues for the first 1/2 hour and then I get passed onto a therapist assistant who takes me through the exercises for the last 1/2 hour. The assistant I normally work with is great but left 2 weeks ago Wednesday to get married and take a honeymoon.

The gal who is filling in for her specializes in sports and doesn't believe anything we've been doing is effective so she went ahead and started me on entirely different set of exercises. Each and every one of these new exercises works the muscles between my shoulder blades and lower neck area.

After the 3 restless and extremely uncomfortable nights camping last week followed by 2 straight days of her significantly more intense exercises my neck and upper back were in a pretty painful spasm. I wasn't able to do much of anything on Saturday. Sunday was a little better but not much. Today I was beginning to loosen up a bit and move pretty good. Just in time for PT this afternoon.

I was pretty clear that I had a long painful weekend but she insisted that I continue with the same exercises - using the very muscles that were just coming out of spasm - only doing more stretching between them. So guess what? Now I'm back in the same painful spasms and have just gone ahead and canceled my appointment for tomorrow.

Next week my usual gal will be back and so will I. Can't wait.

Sunday, October 24, 2010

To Botox or Not

I just saw this NY Times article about the recent FDA approval of Botox for chronic migraine (15 a months or more) prevention. Obviously this is a good first step towards insurance coverage for those of us suffering with chronic migraines who want to try it but can't afford the high price tag.

I'm concerned about it though. Anecdotally I feel like I've read other blog posts of migrainistas who have tried it with negative or no effect. It also seems like the research I've heard about doesn't really show that this is an effective preventative. My physician has talked about it several times. She really wants me to try it but it is far too expensive for me to consider. Somehow, it feels like a really expensive gamble with the odds stacked up against me.

Is it me? Have you-all had, heard about, or read studies of positive experiences with Botox?

I do feel like I would try it, out of sheer desperation for relief, if my insurance company decided to cover the cost.

Friday, October 22, 2010

Vacation Recovery

So my husband and I just got home yesterday from a short vacation to the mountains. We wanted to get away from the city for a few nights and just relax and be together. I'm not a outdoors kind of woman so I searched for a cabin with heat/air (you never know this time of year), full bathroom, kitchen, a fireplace and dog friendly.

The cabin was pretty nice but it was more remote than I had anticipated. We were in a pocket where there was no cell phone service from any provider, which I wouldn't have minded if there had been a land line in the cabin. There were no street lights so if you were needed to go out after dark you were pretty much on your own along the poorly marked windy mountain roads. The only lock on the door to the cabin was one of those push and turn locks and it was installed in such a way that a simple credit card could have released it. Yep, more remote than I had anticipated and more remote than I was comfortable with.

I was fine during the day. We explored the area, played games, had lots of fires and general merriment. But when we laid down to go to sleep with the lights and the music off, oh boy. That's when my imagination would run wild. I felt so vulnerable that I just wasn't able to relax enough to sleep more than a few hours each night. If anything went wrong we would just be stuck there until light.

Don't get me wrong, I actually really had a good time outside of the poor sleep. The mountains were undergoing peak foliage and were absolutely gorgeous. Oh well, live and learn. Next time I'll verify access to the outside world.

As you can imagine I'm now in vacation recovery mode, tired, in pain and way behind in my household duties, not to mention my blog.

Friday, October 15, 2010

Medical Trick or Treat

I love this blog carnival topic because so often I feel like a vulnerable child, on Halloween, dressed up like a sick girl, knocking on a stranger's door just hoping the practitioner who answers will be competent, understanding, a good listener and a great detective. The ugly truth is that there are a lot of scams, lies and incompetent, unscrupulous folks out there. What worries me is how difficult it can be to know the difference before it's too late.

Here are some of the tricks and treats I've encountered:

-Preventative drugs feel like tricks because none of them have been able to prevent my migraines. My doctor tells me that she has patients who respond to these daily preventatives and I certainly have no reason to think she is lying about it. After all she did not just think up drugs to give me - these are commonly used for migraine prevention. I guess the real trick here is my body not responding as we all wish.

-Rescue medications, on the other hand, feel like treats because they are the only reason I can still function as much as I do. Don't get me wrong, I don't function all that great but they keep me out of bed 24/7. Small victories -right?

-Insurance is a mixed bag of tricks and treats. They continue to make record profits and tell their sob stories about how they need to charge more and more because their costs are going up. Oh, poor multi-trillion dollar corporations. Don't we all feel bad for you. Sure, let us take care of it and hey, why don't you go buy yourself a small island to cheer yourself up. On the other hand, we would all be bankrupt without it. ARG!!!

-Acupuncture is a big treat. It's been several years since I've had it done. In fact it was one of the first things I tried when my migraines started getting out of control. While, it never seemed to do anything for my migraines it made me feel so darn good. It was more relaxing than anything - even a massage. I would always leave feeling different, more together. Perhaps the benefit didn't take hold because I couldn't afford to have it done as frequently as I was told was necessary. Either way, I loved it and hope to have much more of it in the future.

-Laughing is a grand treat too. I often feel like I'm going to explode from the pressure, stress and frustrations that come with chronic pain. Don't know what I would do if not for the release comedy provides my body and soul.

What's your favorite treat? What's the biggest trick you've ever encountered?

Thursday, October 14, 2010

Anniversary Fun

So yesterday was my three year wedding anniversary and thankfully I was feeling good enough to go ahead with our celebration plans. The plan was to go downtown and have a wonderful Chinese dinner in Chinatown and then walked down to the Lincoln monument so we could sit and enjoy the beauty of the monuments all lit up in the dark.

What I didn't realize is that the folks filming Transformers 3 had also made plans there for the same night. Just the one night. They had the entire area flooded with lights, which of course attracted all kinds of big bugs. The filming itself attracted a whole bunch of teens and other onlookers who just wanted to watch. It wasn't quite the visual or romantic experience I had in mind but we managed to make the most of it. After all it was perfect weather, we were together and I wasn't in a bunch of pain.

Any time I feel okay on the same day I want to do something fun is a fantastic day.

Tuesday, October 12, 2010

Missing Lone Star

It's been a few weeks now since Lone Star was canceled after just two episodes aired and I'm still sad about it. I've watched the two episodes on a couple times longing for more, longing to see the story unfold, longing to know what becomes of the characters.

Lone Star was the best new thing on TV this fall by far and it was the first to be tossed aside by the networks. It was a rare gem of greatness. A unique and interesting story that was perfectly cast and beautifully executed. I don't normally feel so strongly about a show, especially one that only aired two episodes. But something was special about Lone Star and now it's gone.

I blame the network for the poor title, not promoting it properly and for giving up on it so quickly. Did you ladies get a chance to see it? Is it just me or did you love it too?

Migraine Blog Carnival Is Up

The new Headache and Migraine Blog Carnival has been posted.
This month's topic is all about how our hobbies help us cope with our head pain and can be viewed here.
It's well worth the read!

Friday, October 8, 2010

Thankful For Things To Do

Coping with my chronic pain is one thing. Coping with not working while in a city so far away from my family and friends is a whole different beast. Prior to the onset of all this pain I happily participated in several hobbies. I loved to draw, do theatre, crochet, bead and have long conversations with friends. Unfortunately, the pain coupled with the fog have made doing these activities impossible. Either I can't physically manage or my brain fog just blocks my creative juices.

I've had to search hard for things I can do when my pain eases up enough that I can function. It is the only way I manage to stay somewhat sane during this incredibly difficult time. Here are a couple of the hobbies and projects I've adopted to help me cope with my present situation.

1. This blog which I started about 10 months ago has been a real positive for me. My wonderful followers with their understanding and encouragement make me feel less alone in these struggles. I also love reading the blogs of my fellow chronicbabes.

2. Creating a Shutterfly site for my extended family to share photos and events with each other. This is a project I just started in August and have really enjoyed putting together. I've had to take a break as we worked on closing our storage unit last month but can't wait to get back to it when I've recovered. The older I get the more interested I get in my family history.

3. Cooking healthy and tasty meals is sort of an accidental hobby. I'm a housewife so I prepare our meals. I've stopped eating meat and worked really hard to find and prepare healthy meals for my husband and I. It has not been easy, especially on high pain days but is a work in progress.

4. Dates with my husband. It's not really a hobby or project but it goes a long way to helping me feel somewhat normal and helping me to stay connected to my husband.

Honestly I wish there was more I could do. I wish I had the ultimate destresser of face to face time with my friends regularly. Good friends are a very important part of a woman's life - any woman. I think it is especially important when we are facing adversity. That being said, these things really save me from twiddling my thumbs into madness and I'm mighty thankful that I can do these things.

Wednesday, October 6, 2010

Disappointing Day

It took almost 2 hours to make the 20 mile trip into the heart of DC and that was without rain. Thankfully it didn't rain. Can you imagine what that would have done to the trip? Anyway, we made it and I got my handful of minutes with the doctor.

You can't imagine my extreme disappointment when he told me he doesn't think what's going on with my jaw is contributing to my migraines. He says my disc is displaced and that it is very common. Sometimes causing pain and sometimes not. I don't understand. My jaw and head pain always go hand in hand. When I have a bad migraine I have a super painful jaw and vice versa. Neither ever happens alone. How can the jaw have nothing to do with it?

I'm crestfallen and want to just cry. Of course I can't because it hurts too much to cry. I'm not sure what to do next. I was so positive addressing this jaw issue would provide me some relief. I don't want this to be my life. What else could it be? Honestly, what else could it be? None of the preventive medications have worked. Doesn't that have to mean there is something else contributing? Oh this is so frustrating! I want answers and every time I turn to another idea I come up empty.


Tuesday, October 5, 2010

Let's Try This Again

This week is a bit crazy - well for me. I saw my neurologist yesterday. We're going to try yet another preventative. I haven't had a new drug to try in a while so this should be interesting. It's another take at bedtime, may make you drowsy kind of drugs. I've been sleeping so very well since I started taking bedtime drugs - so unusually well that I often wonder if I could still manage without them.

Then I had PT this afternoon. It's been 30 days since I started so it was time for a reevaluate. Sounds like things are improving yet there is still progress to be made. When we started she told me that I had an excessive range of motion in my neck and a really tight thoracic spine. The spine is loosening and as that has happened the range of motion actually got even more excessive.

Tomorrow I will finally get to the maxillofacial surgeon. I know I said as much last week just before getting the cancellation call from his office. This time it should actually happen. I've prepared my disk and radiologist report along with directions to the hospital he's at. I even packed a book in the extremely unlikely event that we arrive early. The only thing that could stand in my way now is the rain in the morning forecast. Traffic here doesn't need much of a reason to turn from bad to a nightmare. Rain always creates a nightmare here and there is a chance it will be falling during the morning commute. DC traffic sucks!

Friday, October 1, 2010

A Girl Has Gotta Do

Welcome October! So very happy you are finally here!

As you know my husband and I spent a good part of September emptying our storage unit, downsizing and reorganizing our 1 bedroom. We finally got the last of it out yesterday evening just before the storage unit office closed. We have officially shoe horned everything we really wanted to keep into our small apartment. To do so we have given up a good amount of floor space, which now looks a lot like the storage unit did (stacked boxes and such).

While it feels good to have all the stuff moved there is still quite a bit left to organize. I don't so much mind that our space is smaller or that the aesthetic has changed but after 3 weeks of moving stuff in, sorting, reorganizing and such our apartment has been in a constant state of disarray, which is starting to really bother me. When my space is cluttered and disorganized I feel that way internally. I'm not feeling well so I'm having a tough time trying to get to these smaller organizing tasks done.

There isn't much I can do about it. The tasks will wait until I can get them done. I'll continue to make slow progress and do what I can when I can. In the meantime, to counteract the internal stress of the undone mess, I did what every other woman would do - I cut my hair.

It feels great even though I don't.