April in Review

As we come to a close of yet another month I am marking the 2nd month since my dietary changes. My body continues to appreciate the good foods I'm putting in it. However, a downside was discovered when I realized I had lost a few pounds since March when I started this change. My entire life I've struggled to obtain a healthy weight, finally reaching this goal about 5 years ago. A year later the migraines rapid invasion slowly began to steal those hard won pounds (this will have to a post for another day).

Four years later I just don't have any pounds left to spare without serious health implications. It is simply not acceptable to keep losing weight. As I began to realize what was happening about mid way through the month I decided to do something I've never done before - think about calories. Since I'm not working I can devote a good deal of time to learning about calories and my body. I didn't realize all these wonderful healthy foods were SO LOW in calories. No wonder. I tried to find a way to continue to eat the way I was and increase the calories - there just wasn't a way beyond a dramatic increase in the amount of these foods that I eat. But, as any migrainista can attest, nothing spoils an appetite quicker than severe pain and nausea. Eating 3x as much volume will not work - at least not unless/until my pain situation changes.

What I decided to do going forward is to add dairy back into my diet. I can meet my caloric need for a slow weight gain by adding just a big of cheese, some milk and not worrying about what small bit of dairy some dishes may call for. I don't think I'll ever go back to having as much dairy as I did before but I don't see that I can do this without some.

Additionally, I made a list of my foods and their calories so that I can track how many I take in each day. Until all of this is habit and my weight is well on the way back to normal I am committed to this daily tracking. Hopefully this heightened awareness will help me to have high calorie, easy dishes on hand for use on my really bad pain days when my food intake lowers. Things like Amy's Pesto Pizza. If you haven't already tried it, I highly recommend it - very good!

Overall I'm happy with the progress made this month. As I continue to learn more about foods and health I am constantly surprised by how much I didn't know. Food is such a big and important part of our lives as human beings, and yet I made it through 31 years without much thought or knowledge about it.

Here's to healthier more balanced May...Cheers!

Guilty Pleasure

I'm so hooked on The Young And The Restless. I started watching it my first year of college because my roommate had to watch and I was almost always around at the same time. It was on, the room was small, and after a few months I was hooked too. Jill, my roommate, would explain the character histories and relationships until I had a good understanding. Thirteen years later...

I see how silly it is - the stories are often far fetched and the characters are so dramatic. But at the same time, I enjoy escaping into the fictional lives of the residents of Genoa City. And because I've been watching for 13 years there is a sense of history with these characters - they have become very familiar. It is my guilty pleasure.

Does anyone out there watch Y&R too? Who do you think killed Adam?

Morning Me

I love mornings - always have. When I'm up early I feel like I get more done, have more energy and am more together/organized. Mornings have always been my time to think about the day to come, to get ready, watch some news, have some breakfast and be alone. I continued to enjoy my mornings even after the sharp increase in my migraines, but when I stopped working I began to lose this time.

When my migraines increased I found that I just needed more sleep. It became more difficult to get up at my usual early hour, but I still really needed that time for myself. In the past two yeas since I've stopped working I've found myself sleeping until 7:30 or 8:30 in the morning. Absolutely unheard of, even when I was a teenager. Surprisingly I'm not beating myself up over it, but I do miss my morning time.

I tried to recreate my mornings, just a little later in the morning, but it didn't work because now I get up about the time my husband does. There is a whole new routine now in the mornings. He has priority in the shower and such because he has a job to get to. So I end up fixing breakfast and making a lunch for him to take and I do some cleaning and such until he leaves. Then I spend the entire day alone. We've moved around so much and right now we live someplace so big, and I don't have work so I just don't have things to do or people to see outside of my housewife stuff and doctor visits. My life is so different now that I just don't need my morning time the way I used to, but I miss it all the same. Perhaps mostly because I miss the involved active days of years past.

I still consider myself a morning person but I guess, like so many other aspects of life with chronic pain, I've had to redefine how it manifests in my life.

Are you a morning person or a night person? Has it had to change with your health?

Thanks To YouTube

I've recently committed to finding and reviving my creative side that has been quieted by my excessive migraines. To get me started down that path I spent some time over the weekend watching old music videos on YouTube. I never really spent much time on YouTube until recently when I discovered that you can watch any old music video you want!!

Music is such a wonderful gem because a song can bind itself to our memories and emotions like superglue. From about 6th grade on music was a very big part of my life and definitely a big part of my creative process and expression.

So, I got started with some Motown Philly and right away I was transported back to the early 90s. I went through about 4 hours worth of videos and then needed to be put myself to bed. During this time I was reminded of parts of me that had mostly been forgotten among the pain and stress of the past several years. Even better than that, I was able to experience those feelings again. I found myself laughing out loud, getting teary and even danced a bit. It was thrilling.

Even though I didn't wake up with all the same feelings, I know YouTube is there for me any time I want those experiences.

Currently, my hair is a really dull dark blonde. It used to be a light blonde that glowed with a tiny hint of strawberry, but those days are long gone. Back when I was working I would get some nice red and blonde highlights - but that also came to an end when the income did. You know how it can be with hair...sometimes you start to just itch for a change.

I started to get that very itch this morning and now I'm wondering if I can pull off really dark brown or black hair. My skin is naturally fair so I can't help but think such a change could go either way. It might be a really nice contrast and be interesting - or - I could look ridiculous.

I've been so frustrated with my hair lately. There has always been a bit of a wave, but since the surgery I had on the back of my head last summer (on the occipital nerves) the back has been downright curly. Don't get me wrong, the curls are just fine by me. The trouble is that the front seems to have turned very straight. I may not be in control of my style, but I can control the color :)

Maybe I'll seek out a temporary dye just to test it out...do they even make such things anymore?

As I Think About Time

For adults time seems to move fast, and even speed up a bit over the years. But I would have thought that being unemployed and dealing with my pain would have slowed it down some. I'm a little surprised at how quickly time is still moving. Perhaps it continues at a clip because taking care of myself and my housewife duties is actually the equivalent of full time work.

As I stop and think about this I'm realizing that I do fill my time well with positive stuff. There is the obvious productivity of household chores (dishes, laundry, cleaning, etc.). More recently I've been spending a good amount of time educating myself about better eating and searching out good recipes. This blog and the connections I'm making participating in Chronic Babes have been a wonderful personal boost. I still manage to read for entertainment. And when my husband is around we do stuff together.

As I think about my time I see that my life is pretty good despite the hurdles I'm presently struggling with. So I'm setting an intention for my life today: To find/regain/reestablish my creativity that seems to have disappeared as a result of the pain and/or medications. I really do miss participating in a creative process and would just love to do so again.

Laughing With Jason Sudeikis

I'm a big fan of Saturday Night Live and could probably give you 30 names of people who are on or have been on that I think are fantastically funny. Right now one of the best is Jason Sudeikis. He does the Joe Biden and Todd Palin impressions, he is one of the 2 A-holes, he is co-hosts the ESPN Classics scetches, and many other wonderful characters.

So many laughs...and lord knows I need them these days.

Have you seen him? Who makes you laugh?

Tools of Comfort

Here are some current tools I use for comfort when I'm having a high pain day...

1. Pillows: I have lots of fluffy, soft pillows around the house - very handy when it hurts even to use my neck muscles to hold up my head.

2. Christmas lights: I strung some Christmas lights around our bedroom. It provides a much more tolerable level of light throughout the room without the focused source of our lamps, which can feel harsh even with 40 watt bulbs.

3. Ativan: When the pain is intolerable I can take this with my other rescue medications and it will knock me out. Sometimes it is just better to sleep while the meds do their thing. I don't use it often, but am comforted just knowing it's available.

4. Heat: I know cold is supposed to be what you use on a migraine, but cold makes my body very tense and actually causes pain. I am comforted by warmth, especially by breathing in warm air. Often I'll cover my head with a blanket, the wonderful dark warm comfort!

5. Room darkening curtains: I've been very light sensitive since I was quite young (probably because I've had migraines since I was quite young). These room curtains do such a great job of blocking out most of the sunlight on really sunny days, which is such a big comfort. It allows me to do more than I otherwise could while in pain.

Gosh, I sorta thought this list would be longer when I got started. Oh well, maybe I'll find more tools of comfort along the way. What are your tools?

Day 8

Today is day 8. Eight days in a row with a migraine. It has been a long time since I've gone this long without at least a 1 day break. Each month I have more days with a migraine than without, but usually I don't have more than 4 days without the much needed respite. The longer my body goes without the rest from medications and pain the more scattered my mind is.

I'm getting so sick of this brain fog! I hate that it's happening now. I'm scared it will become permanent, even if someday I find relief from all the pain. I don't even know if it is the pain or the medications that are to blame.

Today is day 8 and I am both angry with my body and sympathetic to the stress the poor little thing is under.

Do you experience this with your migraines?

A Migrainista And A Wife

Living with chronic pain has forced some drastic changes into my life. It's a constant challenge to cope and to figure out my new limitations. Deep down I'm still the same woman, but my mind isn't as quick as it used to be and, more often than I would like to admit, my frustrations surrounding my pain overflow into frustrations about silly little things. It's hard for me...I can only imagine how difficult it is for my husband.

He seems to handle it all in stride. He is incredibly supportive of me doing whatever I need in order to get better. He works really hard to take care of our little family. He takes really good care of me when I am at my worst. He never gets bothered by the mess that can accumulate around the house when I'm having a string of really bad days. He is a really great man, a wonderful husband, and I love him so very much!

I only wish I was a better wife - and by better wife I mean not in pain all the time. If I was able to work we would be more financially secure and that would take some of the pressure off my husband. Plus, I bet at times I'm probably not much fun to live with. I'm not yet fully adjusted to my present state and so I struggle because I'm not the perfect wife I want to be for him. In my head I know this is ridiculous because all people, all couples have their own set of struggles. I just want so badly to be in control of my body again. I want to decide what I do and when instead of my migraines dictating so much of my time. Partly I want this for me, but mostly I want this for him.

Being a migrainista and a wife can certainly be tricky but it also comes with many blessings. I'm thankful every day for my loving husband. He is a wonderful companion and friend. I can't imagine having to face all of this without his love and support.

Pondering Pot

When I returned from the grocery store this afternoon the hallway in my apartment building was thick with the scent of pot and something else I wasn't able to put my finger on. I couldn't help but consider spending some time sitting out there in the hopes of reaping some pain relief. I would be lying if I tried to say this was the first time it occurred to me that pot may be a good thing for my migraines. Truthfully, I think about it often.

I've never smoked anything in my life and don't really have any interest in starting now but I would like to try baking a marijuana treat to see if it would prevent or stop my migraines. I do have my normal rescue medications but I'm not crazy about them. When I first take the meds my migraine will get much worse for about an hour, and then it will slowly start feeling better (but it rarely takes all the pain away). Then I'm left in a fog and my heart feels off. Perhaps the pot experience would be more positive.

I honestly am not just looking to get high. If I could be free from pain I would be as high as I would ever want to be.

Unfortunately, I don't live in a state where medical marijuana is legally and safely available. I don't even know how I would go about obtaining it on the streets so I guess for now I'm left to my wondering. Perhaps the day is not far off when medical marijuana is readily available everywhere in the country. I sure hope so. I would be comforted by the regulations and quality assurance that would come with the legalization of pot.

Have any of you tried it? What happened?

Veggie Lo-Mein

Every now and then a dish comes along that really stands out and becomes the subject of salivation inducing thoughts. The rare dish that I find myself thinking about frequently year after year. The first time it happened was when I was living in Hawaii. It was in this small town on the north shore of Maui called Pa'ia back in 1996. I don't remember the name of the restaurant and it doesn't matter anyway as I learned some time ago it had closed down. The dish was a chicken caesar salad (CCS), something I had never liked before and have not liked since. This CCS was remarkably perfect and the flavors were just so unique. Even better, it left me perfectly satisfied. I was full, but not uncomfortably so, it was just right - perfect. Mmmmm!

The second time it happened was in 2006. I was visiting my husband's (then boyfriend's) parents. They had gone to the butcher and gotten really nice cuts of meat, marinated it in something really yummy, and grilled the world's best steak. I've certainly had my share of steak over the years but never really understood what the big deal was. However, this steak was so extraordinary. Maybe it was the cut, or maybe the wonderful marinade, or maybe some combination - whatever - the point is that it was fantastic!

Since I've made these big changes to my diet I feel badly that I won't be able to have that wonderful steak again. And since the restaurant in Pa'ia closed I certainly won't have the wonderful CCS again. So you can imagine how thrilled I was so find a new dish that excites me enough to be considered one of these rare dishes AND that fits within my new food standards. Best of all, this is a dish I prepare so I can eat it as often as I want. It is a simple lo-mein and vegetable stir fry. I made it for the first time just two weeks ago, and have made it 4 times since then. But I've thought about it every day. And on a day like today, as a migraines creeps into my head, I at least have had the pleasure of enjoying this perfect dish.

The Latest Idea

I feel negligent for not having posted anything for the past week. My mom was in town and so most of my time and energy went into hosting. Fortunately, her visit happened during a good migraine week so I really did get to enjoy my time with her.

I have missed the blogging though and am happy to be returning to my routine. One thing of note that happen last week was my neurology appointment. My doctor had an interesting idea (she is fantastic about thinking outside the box) about a possible cause of my pain. Apparently she had another patient like me with frequent migraines that were not responsive to the usual preventative medications and had really bad TMJ pain. Turns out this other patient had a degeneration of her TMJ joint and all was relieved by joint replacements done by the Mayo Clinic. She has ordered an MRI of my jaw area to see if I may have the same kind of degeneration in my joints.


A solution, any solution, would be welcome. But I have to admit the idea of having my jaw joints replaced is a bit intimidating. It sounds painful and like it would leave big scars on my face. How does one eat and talk while recovering from such a thing? I don't even want to go down these roads of thought yet because I don't yet know if my joints are in need of replacement.

I'll go and have my MRI in just a couple days, but will have to wait until my follow up next month before I have the results. Until then I'll work to keep the what ifs at bay.

There are all kinds of great blogs and great postings to be enjoyed at the new Chronic Babe Blog Carnival. Check out the link...

http://www.chronicbabe.com/articles/831/

Working With My Chronic Pain

I've always worked. My first job was at McDonalds when I was 15. I worked through high school and college and all the years since. That is until about 2 years ago when, after 2years of struggling with these out of control migraines, my husband and I decided we could afford to have me take some time off to get my migraines under control. Working had become an intense struggle. I felt miserable but had to push through in order to get my work done. It was draining and frustrating. I've always been a hard worker but it began to seem like most of my hard work went into faking some sense of normalcy. I thought if I could just get some time to really focus on getting better then I would be able to return to work. Here we are two years later and I'm not doing any better.

I feel so fortunate that I have my husband and we are able to make ends meet with his income alone. But every day I don't work is a struggle. Working has always given me a sense of independence and the wonderful feeling that I'm contributing to this world. I liked having places to be and people to coordinate with. When I was working I felt connected to the community. Not having any of that now is hard to deal with.

I can't help but feel like there is now a power inequity in our marriage. In my head I know I'm contributing a lot to our relationship. I do everything at home; all the laundry, cooking, cleaning, ironing, bills and budgets, care for our dog, shopping and errands. I don't know why I feel so guilty about not working outside the home. Sometimes I joke about being a housewife minus the kids and money, but it's just a cover for all the guilt and shame I feel when people ask what I do.

On top of the guilt I struggle with the what ifs of the future. What if this doesn't ever get better (a scenario that seems more possible every month)? I feel like I would just be a burden on my husband. Perhaps he would tire of taking care of me and want out. Or...what if something happened to him. I would probably have to move back in with my mom. But that isn't a good plan for the future. Maybe I would be able to get on disability, but that wouldn't be enough to support myself on. Will I ever be self sufficient again? What if I do get better? How do I reenter my career after years away because of illness? How do I explain this kind of a gap in my resume? Who's going to hire someone like me when there are so many other candidates without health gaps? We no longer live in the same state so it's like I still have connections or relationships with people who know my value as a worker and a human. This is all so overwhelming!

On top of the guilt and what ifs I have a tremendous amount of sadness over all the loss my health has imposed. I still have the same dreams and desires as I did prior to the nasty intrusion of chronic pain. However, they all seem quite out of reach today.

I don't really know what to do with all this.

If I could just find a job with descent pay and flexibility to work from home and wait out the pain before returning to my obligations...

National Cherry Blossoms

I remember seeing news coverage of the national cherry blossoms throughout my life and wishing I could see them for myself. I've always wanted the experience, but just not enough to make a special trip to DC for it. Who could have guessed that time would find me living in a DC suburb. Last year was our first spring here and I ended up missing the blossoms taking care of my husband who had just had his tonsils removed.

Today I finally got to head downtown as the blossoms were peaking. There was hardly a cloud in the sky and the forecast was calling for a high of 80 degrees so I decided to head downtown in the morning so I could at least beat the worst of the heat. I knew the combination of riding the metro and walking around outside was going to trigger a migraine. I wore a hat and my dark shades in a feeble attempt at prevention, which of course didn't work. But...

But, it was so worth it. I have a lengthy list of triggers but most are not so enjoyable. One lone cherry tree in a yard is beautiful. What makes the national cherry trees so exceptional is the sheer volume and their proximity to the grand monuments. I'm glad to have had this opportunity. And I don't even mind paying the price.