Friday, December 30, 2011

The End and The Beginning

As much as I love the idea of the new year starting, full of possabilities and the unknown, I just can't get behind all the new year's eve and resolution hoopla. The idea of staying up to usher in the new year dressed up at some big party drinking and such sounds like punishment to me. Can you say PAIN. I'm actually not even sure I want to celebrate the end of 2011 and the start of 2012 beyond maybe making a toast to better things to come with my husband over dinner.

Despite how it sounds, I am excited about starting a new year. We never know what the next day, the next month, the next year will bring and for whatever reason I like to start out feeling hopeful that I will feel better. Back in the day I used to make resolutions but never managed to remember them beyond January so I don't make them anymore. Instead I prefer to take stock and think about what I could be doing differently to improve my life. It's sort of the same thing I guess.

This year I feel like the Fibro class I took at Mayo got me set on the right track. Since returning home in September I've been committed to implementing the stragegies I learned. The process has been tough and slow moving but I feel like I am beginning to feel more balanced and I want that feeling to increase over the coming year. Basically I'm affirming my commitment to this path.

Thursday, December 29, 2011

Rice Paper Me

This is my 400th post!

My husband and I joke that I'm made of rice paper because I am so physically fragile. Seems like the most innocent things can cause me pain or take me down. This afternoon, for example, I took our dog for a walk. I decided to take her around the neighborhood a bit since it is 60 degrees outside. Half way through I realized that the breeze, as warm as it felt, was cool enough to cause my ears great pain, which is now beginning to trigger a migraine.


The list of little things like this that trigger pain in my body is lengthy, which has long been a source of frustration in my life. The good news is that being able to joke about it with my husband has done wonders to help me come to terms with this reality. The frustration and anger that used to bubble up during these times has been turned way down. I still get frustrated and angry about it sometimes but it isn't as frequently or as severe as it used to be.I'll never be able to really thank my husband for this and a thousand other ways he makes my life better.

Wednesday, December 28, 2011

A look Back

With Christmas behind us it is now time for the annual look back at the year that was and look forward to the year that will be here shortly. Something about watching all of the retrospectives on the news, going over our yearly expenses and income spreadsheets and preparing the new calendar just puts me in the mood to think about my own past and future.

This was a big year.

The highlight was definitely moving to St. Louis. I've loved being back in the Midwest and being so close to family.

The toughest part of this year was losing my grandma.

While there was plenty of ups and down in between, overall I feel like I'm in a better position at the end of this year than I was at the end of last. Part of that is certainly attributed to our relocation but the other part is because I now have a more solid foothold on controlling my symptoms through lifestyle changes that I'm slowly implementing. I have a couple of great docs and a new plan to control the migraines. We've adopted a wonderful little rabbit.

What is best and worst part of your 2011?

Tuesday, December 27, 2011

Holiday Recovery

Christmas has come to an end and I am WORN OUT. I've been sick for a more than 2 weeks now and while I managed fairly well through the family gatherings on Christmas Eve and day I've just been so very tired. Fatigue is a staple in my days, of course, but I've been extra tired because of my cold and then adding on extra activity...yikes!

I was relieved to have been able to show up and participate in the family festivities because it was great to see everyone and enjoy my favorite holiday. Wouldn't have traded it for anything. We were the first to leave on both days but I don't feel bad about doing so as it was what I needed to do to take care of myself. Actually, I'm sort of proud that I was able to manage as well as I did through it all.

I had to make some cuts in order to accommodate my cold like not doing as much baking, taking store bought dip instead of making my own, and the like. Plus there are several regular chores that just didn't get done around the house like dusting and laundry.

But now Christmas has come to an end and I'm getting back into my regular routine. Happily. Tonight we've been invited to drive through a light display and dinner with my side of the family who live locally. I had been planning on going and looking forward to it but have decided not to go because I'm still sick and just so worn out. I hate to bow out but am proud of myself for making the right decision for myself and for not beating myself up about it. I consider myself in holiday recovery right now.

How did you do this holiday season? Do you feel like you are now in recovery from the festivities?

Thursday, December 22, 2011

Ignorant Family Member

My cousin's new wife recently started a blog that I have been reading and enjoying. I thought it might be a good way to get to know her better since they live so far away and I certainly have learned a thing or two about her. Up until yesterday's blog post I felt like I was beginning to appreciate and even like her. But yesterday's post was downright offensive.

She sat up on her pedestal and insulted everyone from people who take classes online, to people with disabilities, people who need public assistance, people who have children without living in a single family home with a backyard and college savings accounts and even people who can't find jobs. Perhaps the worst part about this post was that she started off by saying that she knew she was going to upset people with her post but that she hoped people would read it with an open mind, compassion and understanding for her and her "truth". The irony, of course, was that she went on to display a complete lack of those three traits. Plus the topic was responsibility.

Obviously, I was personally offended by the horrible things she had to say about people with disabilities and wanted to shoot off an angry message to her. I didn't. Then I thought about how young and naive she is and thought what she really needs is someone to teach her why she is way off base in what she was saying. I stewed about it overnight and this morning and have decided that it isn't worth it. She may be part of our family now but honestly I won't be seeing much of her because they live so far away. I don't know if I'm doing the right thing here or not but I've decided that I just don't have the energy for someone like her.

She is family so I'll keep her as a friend on facebook but block her posts so she doesn't show up on my news feed. I won't be reading her blog anymore and I won't be going out of my way to make sure she is included in anything. I'll be polite to her at the rare family functions that we both attend but again won't be going out of my way.

Do you people like this in your family? How do you deal with them?

Wednesday, December 21, 2011


I've been sick now for 6 days. For some unknown reason I actually feel worse today.

Monday, December 19, 2011

Apples to Oranges

Sometimes the hardest thing to do is to just be. Be still, be yourself, be fully in each be, being, been. I wonder if I'll ever have full control over my ability to be, authentically. It is as if the world is constantly conspiring all around us to influence who we think we should be, what we think we should want, how our lives should look, even down to how our relationships should go.

I feel like I have to remind myself somewhat regularly that my path is my path and it shouldn't be compared to the images and verbal messages of expectation we are all subjected to. Many of the messages and influences that pressure me run contrary to who I am and what makes me happy and that is a stress I want to get under better control.

Today I had to remind myself to stay on my path because it is my path, the place where I belong. My path is the place I want to be. This festive holiday season that I love so very much is also full of opportunities to step off my path and start judging myself and my life. I spend some time today just sitting and thinking about what I want out of life and how lucky I am to have all the blessing that I do have. With life back in perspective and me firmly on my path again I'm ready to meet the final run up to Christmas.

How do you handle these kinds of pressures and expectations?

Saturday, December 17, 2011

Holiday Baking

Wow, Christmas is going to be next weekend already! Time always goes so fast during the holidays. My husband's birthday is on Wednesday so this week promises to be quite busy. I'm starting to feel like it is about time to do a bunch of festive baking. I'll bake the usual sweet potato pies, pumpkin bread and cookies.

Watching Martha on the Today Show a couple weeks back I found myself thinking I could actually make these fancy yummy cookies. Obviously Martha has a book on cookies, and I had intended on getting it and trying some new ones this season but it hasn't happened. Now that I'm all geared up for holiday baking I'm regretting not picking up the book.

I suppose there will be plenty of the usual baking to keep me more than busy considering my state.

What baking do you do this time of year?

Thursday, December 15, 2011

Sick with a JibJab Smile

As I begin to catch my husband's cold I'm slowing down. No big surprise. Even under the best of circumstances I tend to get every bug that goes around. This time of year life is just busier with holiday shopping and such so it doesn't take much.

With Christmas a little more than a week away my perfect plan of balance and moderation is no longer going to work because now my body has to fight this bug. There are still a few things that will need to get done so I will employ more help from my husband once he gets to feeling better.

Today as a little holiday pick-me-up I went on and created a free animated holiday card with my husband, our dog, our rabbit and my faces. If you have never done this, I would highly recommend it. It will make you smile, I promise. 

Wednesday, December 14, 2011

New Doc Relief!!

I saw my new migraine specialist at Washington University today. My wonderful migraine doc at Mayo had such amazing things to say about this guy and I've waited 3 months for this first available appointment. He was worth the wait.

He wants to take a broad approach in my treatment. Meaning that instead of trying one thing at a time, trying a bunch of things all at once. He is going to restart me on B2 and Magnesium, send me for biofeedback, back to a chiropractor/acupuncturist, set me up with Botox again and increase my daily dosage of Cymbalta.

What I found interesting is that he was encouraged by what I said about the Botox. I have been thinking it was a failure because it hasn't decreased the frequency of my migraines. Over the past couple of weeks, as I've passed 3 months since initial injection date, is that I've seen more neck spasms and pain in the back of my head. I hadn't realized this has decreased until it started to increase again. I think it must have been the Botox. What the new migraine doc said is that Botox has shown to provide more benefit for people like me over time. He thinks that after a year or so on the Botox I could see a reduction in migraine frequency.

Obviously this is encouraging. Hopefully the insurance company sees it the same way.

I think what impressed me most about this new migraine doc is his approach. I like that we are not going to be doing one change at a time. I stopped caring about where this pain is coming from a while ago. I don't believe there is a magic bullet for me out there. All my body parts are interconnected and treating the whole body and mind sounds like the best approach. SO GLAD TO HAVE A DOC I'M ON THE SAME PAGE WITH!!!!!

I feel relieved.

Tuesday, December 13, 2011

The Fountain of Youth?

I recently saw a story on the news about how science is getting close to "curing" aging in people. Supposedly this is not just about extending the length but also the health of our lives. The people being interviewed were so excited about life and wanted to live as long as possible.

Ah the age old search for the fountain of youth. I get it. Don't we all want to live good as long as possible? Sure. But don't we also want to do so with the understanding that there is a limit, that eventually life ends and we move onto the next stage? Don't we grow weary?

I find the whole thing sort of troubling. I do want to live and I want to be healthy while I am alive. What I don't want to do is live for 150 years or more. Heck I don't think I want to live to 100. The world is changing so quickly and not for the better. The world's population is already stretching our planet's resources, can you imagine if people start living for hundreds of years? Technology is pulling us further and further from interpersonal skills. And don't even get me started on the way food is produced and consumed.

Days are long enough, life is long enough. Perhaps instead of trying to extend it artificially we should learn to make the most and do our best with what we are given. It is enough...even if we can't understand that.

I think these efforts are a waste of money and time. I think it shows extreme short sightedness. The problems human beings of today face are numerous and complex. Let's focus our efforts on solving those instead of creating new ones. Let's stop looking for that fountain of youth already so we can live our best lives while we have it.

That's my two cents anyway...what do you think?

Blog Carnivals!

Two great blog carnivals are  now available!
The Headache/Migraine Blog Carnival
and the
ChronicBabe Blog Carnival

Both are great carnivals, well worth a read!

Monday, December 12, 2011

Check Engine :(

The check engine light has come on in my vehicle. Drat!

My car is about 10 years old now so it is all paid off but things go wrong from time to time. Each time a light comes on or a noise is made my heart jumps into my throat. I start to think about all the major things that could be going wrong and all the money it will cost to fix it. Obviously fixing it won't be as expensive as getting a new one. I know that in my head but I can never convince the frugal me to feel that way about it.

This check engine light could be anything from a simple, cheap fix to a major problem that will make me want to cry. The only way to find out what's wrong is to take it in. Since this is the first big problem since we moved to St. Louis I don't have a trusted somebody to take it to - shoot I should have done this research before there was a problem. I spent a couple hours looking at reviews online and calling around to get prices on just the diagnostic test. The cheapest I found was $95!!!


$95 just to hook it up to their machine and tell me what the problem is. That cost won't cover any of the actual repair. In the back of my head I seem to remember a commercial talking about free diagnostic for check engine lights - it took a minute to remember it was AAMCO. I found one of those nearby and will take my chances there just to see what the problem is before deciding to go to a independent shop.

An honest, reasonably priced mechanic is truly priceless. I know there must be one in the area, now I just have to find them.

Friday, December 9, 2011

'Tis the Season

The old saying "It's better to give than to receive" really is true. I'm having such a good time right now thinking of gifts and wrapping them up. My husband and I don't have much money to spend on Christmas gifts so I've become pretty creative at pulling stuff together inexpensively; baking goods, sales, crafting projects and the like. I actually think this makes the whole process even more enjoyable for me because I put so much time and effort into it.

I always seem to end up so excited about giving my gifts and watching them be opened. I even get excited about our Christmas cards. My husband is a wiz on photoshop so we like to come up with fun ideas for our cards. This year he put our heads into the American Gothic picture. He put our dog up in the window of the farmhouse and he put our rabbit coming out of the pocket of his overalls. Our aim is always to make our loved ones laugh.

I just love Christmas!

Wednesday, December 7, 2011

Dear Santa,

This year I have several very practical things on my Christmas wish list:
- relaxation CDs
- books about meditation, relaxation and the like
- undies
- plants

Well, you get the idea. My family has told me that these are not "fun" gifts and have asked me to come up with better ideas. Here's the thing though, I'm very pragmatic and getting these kinds of things as gifts makes me happy because it means I don't have to spend money on them. What better gift is there?

I had to spend some time coming up with some gift ideas that were more "fun". After some time thinking about what I want more than what I need I couldn't help but start wishing for even more basic things. I wish I felt better. I wish I could work. I wish I had the energy to do the things I want to do.

Thinking about these wishes always makes me a little sad. I'm really working hard these days to not spend much time thinking about what I've lost and how crappy I feel most of the time. It isn't helping me to move forward and to live the best life I can. But there I was, thinking about how much my life has changed as a result of my Chronic Migraines and Fibromyalgia.

Eventually I was able to reframe my mind and I started thinking about what I really want despite the pain. Here it is:
- I want to simplify my life.
- I want to grow food.
- I want to find balance.
- I want time with my family and friends
- I want to laugh.
- I want to gain weight.

Unfortunately, these are not for sale in the stores...I guess my family is on their own coming up with "fun" gift ideas for me.

Tuesday, December 6, 2011

Brain Fog and Laughter

The fog in my brain has been particularly thick these past few days. I don't know what brought it on, I'm not having more pain than usual or anything like that. Whatever the reason I've decided instead of getting upset at myself for this fog that I can't control I'm going to embrace it.
It is said that ignorance is bliss. Maybe I can learn to see my fog as a bliss as well. I've come to realize that this fog doesn't equate to a lack of intelligence or even ignorance. Rather it is like forgetting why you came into a room, or where you left your keys. Information is getting lost. We all know it's still there and that it will turn up.

I think I should start trying to have fun with it, you know, learn to laugh at myself when my brain decides to fail me. When I get frustrated and angry about the fog I get more tense and that can't make it any easier for my brain to function. What better way is there to release tensions than to laugh?

Well I can think of one, but laughing might be the more appropriate coping mechanism for this situation.

Monday, December 5, 2011

Monday's Relief

I'm excited about this week because my husband has some time off and we can do stuff together that we don't normally get to do. We've already done a little bit of Christmas shopping and given the dog a bath. Of course, it is great to have him around more but I can't even begin to talk about how wonderful it is for me to have his help in getting ready for all the upcoming holiday stuff.

Christmas may still be almost 3 weeks away but there is lots to do and my physical resources are pretty limited (as you well know) so working in advance is pretty important. Of course, with some undivided hubby attention the big stuff can get done and we'll have more time to enjoy the holidays as the time grows closer.

I feel relieved about the week ahead because of the added help, and maybe partly because of the Ativan I took at 2am. Either way, it's a nice feeling.

Friday, December 2, 2011

A Strange Revelation

Okay, don't judge me. I've had a revelation.

After years of frustration and wasted money on all kinds of brands and styles of underwear, not to mention years of envying my husband for the comfortable boxer briefs he wears, I made a command decision. I am no longer going to put up with underwear that rides up, falls apart, or is saggy in the butt. Since I can't find anything acceptable in the women's section I've decided to try boxer briefs for myself.

I picked some up on sale yesterday and am washing them right now. I can't wait to see how it goes, although I'm sure there will be issues with them as I am a woman and they are made for men. Likely the end result here will be me designing and making my own underwear. In the meantime I look forward to being at least a little more comfortable.

Thursday, December 1, 2011

Creepy Foldgers Commercial

Surly you have seen this ad on TV. For the past couple holiday seasons Foldgers has been airing this commercial about a young man who is coming home (presumably from war) for the holidays. His early morning arrival finds him greeted by his younger sister. They proceed to the kitchen where they share all kinds of awkward sexual tension as the parents awake and overlook.

Is it just me or does anyone else think this ad is creepy?

Wednesday, November 30, 2011

Plastic Woes

No doubt plastic is one of those inventions that has changed our lives in a massive way. I assert that not all of these changes have been positive. Perhaps the best example of this is plastic storage containers. We all have them in our kitchens, be it Tupperware, Gladware or any number of other brands. Some are microwave and dishwasher safe, some are not. All are intended to make our live easier. If nothing else they are lighter than their glass or clay counterparts.

Let's not even talk about BPA, we'll pretend that all of it is completely safe. The problem will still always exist that it is a softer more porous material that soaks up color and odor. I've tried everything but bleach to clean my plastic containers but nothing works. No matter what I can still smell taco meat or chex mix or whatever pungent thing that was once stored in them. They are no longer clear but a cloudy reddish from all the red sauces of stew and such.

It has become so that I no longer use any plastic containers for my leftovers. No matter how much these are sold as light, cheap, convenient alternatives to glass I will never again buy into it. I have bought and replaced so much of the plastic crap - if I had just started off with the more expensive glass containers I would have actually saved money in the long run because they would still be around.

Tuesday, November 29, 2011

Seriously? Office Incense?!?!

This morning was my social security psych appointment. You won't believe what I encountered in the office. Okay I won't keep you guessing...incense smoke. The whole place was thick with it. You can imagine how much this ticked me off.

When the guy came to get me, I asked him if there was another space we could have this appointment. He was not willing to be flexible about this matter. I explained that the smoke was going to give me a migraine. He said that I was welcome to leave. I told him that I wasn't welcome to leave, I was required to meet with him. He knew this was true and just shrugged it off.

At the end of the appointment I told him that I thought this office should be more considerate of patients with medical issues that make them sensitive to strong smells and smoke. I told him that I am not the only one out there who is going to struggle in this environment and the fact that he is doing these appointments for the social security office means they should be aware of such issues. I know this went in one ear and out the other.


Today's migraine is unnecessarily brought on by office incense. Office incense! Who burns incense in an office where patients come to get help?!? Seriously?!?!

Monday, November 28, 2011

Back Home

We're finally back home from Minnesota and things are returning to normal. So far I've been able to keep things calm enough, go slow enough and not allow myself to get overwhelmed. I made a command decision to allow myself as much enjoyment as possible and in that spirit I allowed myself 4 sips of a sweet Riesling during Thanksgiving dinner. I love wine and miss having it from time to time. The alcohol doesn't seem to be what triggers my migraines but rather getting that buzzed feeling in my head is what does it. I figured a few sips of wine would not cause that and so would be okay. Fortunately I was right.

Even though I took it easy I'm pretty tired from the long holiday weekend. No matter what we did drove 8 hours one way and all the stresses caused by simply being away from home and routine. There is no way to make travel anything but difficult for someone like me. I'm glad we went though. It was nice to see my mom and sister and to get away for a few days.

How was your holiday?

Wednesday, November 23, 2011

Happy Thankgiving

Happy Thanksgiving to all of you out there in blog land! I'm off to take a measured, balanced holiday weekend with my family. See you next week!

I wish all of you good luck keeping your pain, fatigue and other bothersome symptoms at bay enough to enjoy your Thanksgiving with the ones you love. Please know that I am thankful for each and every one of you.

Much love,

Tuesday, November 22, 2011



With so much to get done before we make the drive up to Minnesota for Thanksgiving I'm struggling just to stay upright. I have my period (of course) and am having really terrible cramping (worse than usual). Plus during this time of the month I always get really bad migraines that don't respond well to my rescue meds. My brain is all scrambled and I feel all funky.

Our animal sitter is stopping by in an hour to meet our animals and find out what all needs to be done. It's a critical component of the getting ready to leave stuff but I'm just a mess. Fortunately the sitter is someone I know who will be very understanding and nonjudgmental but still normally I would just want to hide in the apartment and do very little, certainly not see anyone but my husband.


Monday, November 21, 2011

Planning for a Holiday Plan

The holidays are becoming more and more real now that Thanksgiving is just a couple days away. I'm so excited - just love the holidays!

This year the holidays are going to be more of a challenge than usual because now we live so close to family. Since the onset of my chronic migraines and Fibromyalgia my husband and I have been living on the East Coast too far away from family to be expected to travel. Now there will be all kinds of invitations to go and do...

I've made a vow to myself and now to all of you in blog land that I'm absolutely not going to overextend myself this holiday season. There will be no staying up and out until all hours. There will be no crazy foods, or crazy schedules. There will be no drinking. There will be no pressuring myself to buy tons of gifts and spend money we don't have. There will be no guilt. There will be no spending all our holiday time with family and friends.

I'm going to make a plan with my husband while we're driving up to Minnesota for Thanksgiving to ensure that we have time for just us this holiday season in addition to the down time I'll need.

This will certainly be a challenge but I am very committed to doing this right so that I can actually enjoy the holiday season that I love so much. Any advice?

Saturday, November 19, 2011

Trouble Making Comments

I follow several great blogs and for the past several days I've been trying to comment on your blogs and have not been able to.

Sorry for all my silence. I'm still reading and wanting to comment. Will get to the bottom of it soon I hope!

Friday, November 18, 2011

More SS Frustrations

So the Social Security office scheduled two appointments for me - one with a neuro and one with a psychologist. I guess I'm not sure exactly what they want out of these appointments but I saw the neuro today. Guess what? I still don't know.

The best I can tell it was an absolute waste of my time. The office was a 1/2 hour away and the doctor was useless. He clearly didn't give a damn about my answers. He wouldn't tell me what the purpose of the appointment was and every time he asked a question, he wouldn't let me answer before he would interrupt  me with another question. He was downright rude about the whole thing. Perhaps worst of all, he didn't ask any questions about MY migraines AND he wouldn't listen to any additional information.

I don't know what the SS office thinks they can learn about  me and my conditions from the interaction I just had with this piece of shit doctor but I'm certain they won't learn anything. All I can do is hope that it won't effect the final decision.

Thursday, November 17, 2011

Oh, Worry~

My Aunt and Uncle, who live locally, have invited us to their greenhouse this weekend for their annual holiday festival. I've wanted to go since we heard about it a couple weeks ago and it is coming up this Sunday. We talked about inviting my husband's parents but figured they wouldn't want to come because they live an hour away and the greenhouse is a 1/2 hour from us so that would mean 3 hours on the road for them. We went ahead and invited them and to our surprise they said yes.

Now I'm getting anxious about it. Before when I thought it would just be my husband and I there was the comfort of knowing that if I couldn't make it, it was okay. If we went and I started to feel real bad we could just leave early - no problem. Now that my in-laws will be driving all this way to go with us I feel like I don't have that out.

Deep down I know no matter what happens I'll be okay. If I have to leave, it's okay, they will understand. But I will feel awful if they have to spend 3 hours on the road if I can only stay for a 1/2 hour. Mostly I think I feel pressure because they are my in-laws and I'm just not completely comfortable with them yet. I still feel like I need to put on the bravest, toughest front with them. I feel like I need to hide the ugliness of my chronic pain from them.

I may feel fine and maybe there won't be an issue at all. I need to find a way to not experience all this anxiety and fear surrounding the what ifs.

Do you ever worry about an upcoming event like this?

Wednesday, November 16, 2011

It's Almost Here

Is it really possible that Thanksgiving is just a week away? The most recent ChronicBabe Blog Carnival was about giving thanks and even though I missed the deadline I still wanted to do a post on the subject anyway. No matter what difficulties and ugliness pervade my days I have so much to be thankful for. Here's a list:

1. Having moved back to the Midwest I'm so thankful to once again be living close to family.
2. Food on the table, soap in the shower, clean clothes in the closet, a roof over my head and a husband who is gainfully employed.
3. Wonderful blogs to read and blogger friends who understand what it's like to live with chronic pain.
4. Have I mentioned my husband/best friend who is such a great companion in life, who keeps me laughing as much as possible and keeps me active as I can handle.

Tuesday, November 15, 2011

New Headache Blog Carnival Up

Great news, the November Headache Blog Carnival is now up! This month's topic is Friendship and Migraines. Check it out.

Monday, November 14, 2011

Fibro Confusion

One thing I've noticed about my Fibromyalgia is that the biggest problem area tends to migrate around. Sometimes my arms and hands give me a lot of trouble, sometimes my legs and feet. Other times fatigue is my biggest issue and other times it is my ability to concentrate. Well you get the point.  Does this happen with any of you?

I feel like this aspect of the Fibromyalgia is both a blessing and a curse. A blessing because I bet it would be worse to have to cope with everything being really bad all at once. A curse because sometimes it makes me feel like I'm going mad. I can't seem to fully wrap my mind around my condition at any given moment because as soon as I think I'm understanding a symptom my symptoms change.

I feel like it is making it more difficult to manage my symptoms too. Hopefully this will cease to be an issue once I have integrated all the changes on my Road to Wellness. Gotta have hope, right?

Wednesday, November 9, 2011

Migrainista and Friend

We all know that close friendships are very important, maybe even more so during difficult times. No doubt living with chronic migraines qualifies as an extended difficult time. But in addition to making friendships important living with these kinds of chronic pain conditions also seems to have a way of shining a bright light on your relationships. At least this is what I've noticed in my own life.

The thing is that I have limited time and energy so it has become imperative for me to evaluate everything in my life and decide what is worth my limited resources and what is not. Friendships are a big part of that. I've been incredibly blessed to have some really high quality friends in my life. Friends who knew me before all of this pain and crap came along. Friends who love me, appreciate me, and still look at me and treat me like I'm the same person I used to be. To say that this is a blessing is a huge understatement.

Unfortunately, all the moving around we have done has meant that these beloved friends live and work many many many miles away from where we live. I missed having regular face to face contact with them greatly over the past several years, especially since I've also been struggling so much with all this pain. Fortunately, we have been able to maintain our friendships despite the distance. Those treasured close friendships have remained largely unchanged.

The real changes have been with acquaintances and with new friendships. Before chronic migraines I was a social butterfly. I was someone who was energized by social events and had many lovely acquaintances that I enjoyed a great deal. These days I am completely drained by social events and just don't have any interest in expending my valuable energy on acquaintances. I love my family and my close friends. They are now the exclusive recipients of all my social time and energy, which basically means that I am not currently investing in new friendships.

The day will likely come when I have some energy to put into developing new friendships. I recognize that it would be nice to have one or two close friends who live near me. Right now just isn't that time. Right now I need to focus on bringing more balance into my life. What's interesting is that I'm in no hurry. I'm certain that when the time is right, the right person or person(s) will come into my life and accept me for who I am, even though they didn't know the old me. Besides, I live with my best friend (my husband) and I get to see him and spend time with him every day. I am indeed a blessed Migrainista.

Tuesday, November 8, 2011

Early Signs of Christmas

For those of you who didn't know, I'm a huge fan of Christmas. I absolutely love every step between now and then. Each year I work really hard to make myself wait until at least Thanksgiving to put up my decorations and start listening to Christmas music.

This year my efforts are being undermined by a couple of my favorite local radio stations who have already started playing nothing but Christmas music. Normally I have about 5 stations that I listen to when in the car. Usually between then, one will have a good song on. While I remain strong on the decorations - mostly because we will be traveling to Minnesota for Thanksgiving and there is so much to do before then that there isn't time. But in the car my defenses are down and I so LOVE Christmas music I often cave and allow the soothing wonder of the holiday tunes fill my car.

In my head I know it's just too early. I don't want to grow weary on the tunes I love so much. In just a couple short weeks when Thanksgiving is over I'm sure the other stations will also turn over to exclusive Christmas music or at least add them into the normal mix. I wish they could just wait. The sinic in me thinks they have started doing this because their large number of retail advertisers are already pushing all their Christmas merchandise and want to get people in the buying spirit earlier than usual so they want to buy  more now.

I won't let it jade me on my favorite holiday of the year. I'm not even going to feel guilty about occasionally indulging in a classic holiday tune or two en route to the grocery store.

Monday, November 7, 2011

The Next Step in Disability

I finally got the additional paperwork from the Social Security office and I have very little time to fill it out and get it back to them so I'll be doing most of it this afternoon and then finishing it off tomorrow afternoon. It's all a bit intimidating. I hope I use the right language. I hope I don't forget anything. I hope I can paint an accurate picture of just how hard my days are.

I just feel such a sense of gravity surrounding all of this process. The information that goes into these packets and applications is what the powers that be will be using to decide if I qualify or not. That's huge!

The office told me to expect the decision to take 3-6 months, possibly longer depending on how long it takes to get my medical records. If the decision is no and I have to appeal, who knows how long this waiting period could extend. I don't want to have to go through that.

Friday, November 4, 2011


Something kind of cool has happened the past couple of nights. It started Wednesday night. My husband had a late hockey game and wasn't going to be home until about 11:30pm or 12:00am so I had gone to bed without him. Not long after going to bed I woke up with a tickle in my throat and a cough. It wasn't like I was getting sick but as I coughed my throat hurt more and I started getting that sickly feeling in my stomach that sometimes results from a hard cough. Anyway, I finally had to get up and get a lozenge and some nausea medications but then I was awake.

I tried to get back to sleep but before long my husband was home, more lights were on and noise was being made as he showered and got ready for bed. An hour later he was finally settling in for the night and I was still wide awake. By this time I was all entangled in the thoughts swirling in my head and was beginning to wonder if this was the start of a long night.

Then my husband pointed out that it was raining. I hadn't even noticed so I took a second to listen for the rain and before I knew it, it was morning. I hadn't even had a chance to think about it before I just fell asleep.

Last night I was again having a little trouble falling asleep and as I was thinking about it I remembered the rain from the previous night and thought to myself, I wish it was raining again tonight. I started thinking about the rain and the next thing I knew, it was morning again.

Is it possible that falling asleep can be as easy as focusing on something external? Perhaps this is simply a coincidence but I'm going to keep trying it.

Thursday, November 3, 2011

Blog Carinval!

The latest ChronicBabe Blog Carinval is now available HERE! The topic is Behind the Mask and is filled with great posts about who we are under the mask we show the world.

Wednesday, November 2, 2011

A New Plan

For the past several weeks I've been trying to get a handle on the first step in the Attention Interpretation Therapy (AIT), which is just taking the time 4-8 times a day to focus your attention on something external. Weeks later I can tell you that I haven't even achieved a small grasp on this exercise.

I forget almost every day to do it even once a day and on the days I think of it, I usually forget after I've done it just once. It sounded like such a simple task, I can't understand why I haven't been able to remember to do it. Then again, I suppose that's why I need to be doing it.

I'm committed to doing this and have grown pretty frustrated that I can't seem to manage to integrate this one simple first step into my day. The way I see it, the only way to move forward is to completely abandon the idea that it is a simple first step that I can just start doing and instead spend some time each night making a plan for the day to come, which includes time set aside for doing this. I'm going to start writing it down and having it displayed. Hopefully then if I see it regularly it will remind me that I have this task to do.

Tuesday, November 1, 2011

Today on Dr Oz

Did any of you see Dr Oz today? The topic was on physician assisted suicide. As usual he had professionals and patients on both sides of this very controversial issue there to discuss their beliefs on the topic. If you missed it the show's website will have segments available for viewing.

I've long thought this to be an interesting topic. One thing that surprised me about this particular discussion was that it wasn't limited to the topic of terminally ill patients in crazy pain with no quality of life and no chance for improvement. Instead the topic was broadened to include people who have chronic pain conditions (they certainly weren't talking about chronic migraines or Fibromyalgia) but more physically limiting conditions like MS.

One of my biggest fears is being without my Imitrex and Baclofen. If any kind of disaster were to arise and my meds were not available, or if my body suddenly stopped responding to them and I didn't have any way to control my pain or relax my muscles enough to allow my migraines to resolve I would be in serious trouble. I've had extended periods of time (2-3 months) with daily migraines that never really subsided and it was torture; I couldn't think, I could barely move, everything hurt constantly, severely. Watching Dr Oz today I couldn't help but wonder if I was put in that position again only with no hope of any kind of medical intervention, would I want to have the option to just take a few pills and go.

I can sit here and wonder about how I would feel and what I would want but when it comes down to it my mind isn't even willing to let me explore this unlikely scenario. I very likely will never have the life I had before chronic pain took hold but I still do have a lot of quality to my life thanks to the medications I have and my wonderful husband and family. I may not be able to work but I can still manage to do some stuff. My situation could be a whole lot worse and while most of the time this is not a comforting thought, today it is. For whatever reason today it is.

Monday, October 31, 2011

Halloween and Stuff

Happy Halloween to everyone out there in cyberspace!

Since we live in an apartment, don't have kids and have a dog who freaks out whenever someone comes to the door we won't be doing anything tonight to celebrate. But I know some of you out there have Halloween plans and I would love to hear about them?

What are you doing tonight? Do you enjoy Halloween? What do you love about it, or hate about it?

Friday, October 28, 2011

Mask or Me

As most of you know living with chronic pain conditions allows us the opportunity to hide behind various masks of normalcy. This months ChronicBabe Blog Carnival topic is about what's behind the masks we wear. I've been thinking about who I am under all this...

I don't entirely know for sure. I often feel like the chronic pain has a way of confusing things, making mud where once things were clear and calm. I used to have a pretty good sense of who I was and what I could manage. The ugliness of my pains are a constant challenge and it has rocked my sense of self to the core.

I'm fairly certain that deep down the me I used to be is still alive. Every now and then I see her fight her way above the ugliness for a moment or two but, inevitably, the ugliness wins over and she is again obscured in the mud. Like all of you, I pretend like I'm a normal person and honestly it helps me to feel more normal. But under that I feel like this chronic pain IS the mask I wear. Unfortunately, it feels like it is now stuck to my face.

I fear that this mask is going to become me. That one day the woman underneath will no longer exist alone. Perhaps this fear is unfounded and the day will come when I figure out just who I am now that my life has changed so dramatically. As for me, right now, I just don't know what is mask and what is me. But I do I am afraid. More afraid than I often am willing to admit to myself. Afraid of the permenancy of this chronic pain and what it will mean for my future.

Thursday, October 27, 2011

Glad to be Done

Well I survived my first disability appointment, though it was a frustrating process. The woman who was interviewing me was pretty cold. There was absolutely no pleasantries or human-like interactions, not even a hello. But that wasn't even the most frustrating part. She kept insisting on me giving her some pretty specific information that I simply didn't have.

For example the date of my first appointment at the Mayo Clinic. I tried to explain to her that I would have been 5 or 6 years old and simply had no way of knowing when that FIRST appointment was but that when they called for my records from them, the records would reflect all of that. She asked for a paycheck stub from my last job but that was 2 years ago and those stubs have long ago been shredded. The business has since gone under so I can't exactly call and try to track this info down.

I never imagined I would need such specific information so my record keeping over the years mostly just included months and years of jobs that I had, and tests that I had done.

Mostly, I'm just glad to have that part over with. Now I wait for the next step and keep my fingers crossed.

Wednesday, October 26, 2011


I have my first appointment with someone in the social security office tomorrow morning. I've spent a fair amount of time pulling together all kind of information in preparation for tomorrow. Today I'm just going back over everything and making sure it is all nice and neat and ready for tomorrow.

I'm quite nervous. I just don't know what to expect. I hope they are nice and understanding. I hope I have everything I need. I hope the process won't be ugly. I hope I get approved.

Tuesday, October 25, 2011

Plant Life

After almost 3 years living in a crummy apartment in Virginia I had almost forgotten what it was like to have live plants in the house. My in-laws sent a very large peace Lily to the funeral parlor when my grandmother died that ended up being sent home with us. For more than a month now I've been enjoying and occasionally tending to this lovely plant. In doing so I've reawakened my fondness for plant life and have begun to long for more.

I don't know why I love having plants around so much. Perhaps it was because my mom always had lots of plants when I was growing up, or perhaps there is just something elemental about them. Whatever the reason I am hoping to have some more plants by the end of the year. I figure, if I can find a few of those rope plant slings then I can hang them in front of windows without having to worry about the lack of space in our current apartment. Then I start a search for cheap plants that can handle the low light that I often create as a result of my light sensitivities.

This will be a nice way to placate myself until we have our own house and garden.

Monday, October 24, 2011

A New Road to Relaxation

The workbook I've been going through has shed some light on why it has been so difficult to focus during my relaxation techniques. The book actually recommends teaching your brain to focus outwardly and to see the world, for times, absent of judgement, the whole Attention & Interpretation Therapy (AIT) thing. The book says that once you have gotten the hang of these skills that moving into meditations or other relaxation techniques will be a natural next step.

Now I've already incorporated relaxation into my daily life along with exercise but, as you may already know, it has been tough to focus the right amount. Either I get super relaxed and fall asleep or can't clear my mind long enough to stay focused on the relaxation. I'm not quite sure what the best way to move forward is.

On the one hand I could stop doing the relaxation stuff until I've had a chance to really put myself through the AIT stuff - basically replacing relaxation with AIT. Otherwise I could just continue practicing the relaxation stuff and start working on the AIT as the new add on. I imagine as the AIT begins to help me my relaxation techniques will improve right along too. I'm leaning towards this option. I don't want to have to reestablish my routine of relaxation time if allow it to stop.

What do you think?

Thursday, October 20, 2011

No Heat, STILL!

All this week St Louis has been much cooler than normal for this time of year. The nights have been in the 40s and the days in the 50s with clouds, wind and rain. Fitting with the pattern we found ourselves in over the summer, this sudden cold spell is the first time we've needed to turn on our heat and when we did we discovered it doesn't work.

The temperature in our apartment has continued to fall, currently at 60 degrees. Now it's approaching noon on Thursday and the furnace still isn't fixed. I'm running the oven several hours a day just to take the edge off, as that is all it can do. We're taking really long hot showers so as to raise the temp a bit more. As a former Minnesotan I have the clothing and bedding to keep us as bundled and warm as a person can be but damage is being done.

Our dog and rabbit are fairing very well. They both have nice thick coats of fur. My husband isn't very bothered either. He loves the cool air, though if it drops much more he will slip into discomfort. It's really me who is suffering right now. I hate the cold. My entire body tenses up (more than usual), folding into itself with force. I'm sitting bundled, watching netflix and playing on the computer, completely unwilling to move. It's just too darn cold in here to leave the relative comfort of my blankets. My head and muscles are paying a high price. The cold air feels like it is burning my eyes and keeps triggering my migraines. All the muscles tension is creating a very sore body and fatigued one as well.

But even more troubling is the effect this could have on my medications. I'm trying to keep them at a reasonable temperature but at this point the possibility that they have been compromised is very real. I left to wonder if their effectiveness has simply been compromised or if the changes they are undergoing in these temps are making them dangerous either alone or in combination with each other.

The repair man was supposed to be back this morning but morning is 20 minutes away from being over and I have neither seen nor heard from them. This had better be fixed today. Tonight's temps are going to be in the 30s, I hate to think how cold it will end up getting in here without heat for another night. I will be heading to the office when this is all over to insist that we get a discount on next month's rent.

Tuesday, October 18, 2011

Sweet Sweet Potato Pie Season is Back

Sweet potato pie season is back! The weather here really cooled off yesterday and even more today. Right about now is also the time when the color of the sweet potatoes in the stores deepen, indicating sweeter sweet potatoes (or perfect sweet potatoes). I bought a few last week at the store but it was still too warm to put the oven on for a few hours while I bake the potatoes and then the pie.

This morning everything was just right for the first sweet potato pie of the season. The apartment had cooled off to about 68 degrees with the rather chilly overnight air.

And so it has begun - the start of sweet potato pie season - I LOVE SWEET POTATO PIE SEASON!!
Hopefully this year's sweet potato pie season will help me put on some weight.

Monday, October 17, 2011

Sleepy Monday

Something inside me took over on Saturday night and prevented me from sleeping. I was tired as always when it came time to go to bed. I took my meds, which always add that boost of sleepiness to a restless evening. Nevertheless I spent the entire night tossing and turning. My mind wasn't racing or caught on some silly obsessive thought. I simply couldn't sleep.

By the time morning came around I felt dehydrated and sick from the lack of sleep. Even though sleepless nights simply happen to everyone now and then, people like me can't handle these kinds of vicissitudes the way the average person can. I tried a couple times throughout Sunday to take a nap but was plagued with the same sleeplessness as the night before. At some point in the late afternoon I bypassed tired and slipped into a strange zone. I was actually getting nervous as bedtime drew near that I wasn't going to be able to sleep again.

It was this anxiety that made it difficult to get to sleep initially, but I was relieved when all of a sudden it was morning. Of course, I just wanted to stay in bed and catch up (impossible) on the lost sleep of the night before. But the day awaited and I got to it. Now a bit after 3 in the afternoon, I'm feeling like it's already 9pm. I'm really looking forward to going to bed tonight :)

Friday, October 14, 2011

Flushing Money

Is it just me or have groceries gotten a lot more expensive?

Perhaps while I was living in Virginia, so close to a Wegman's I got spoiled. Wegman's was big enough to provide bulk items and diverse enough to provide everything you could possibly want. Their store brand items were always cheaper and, for the most part, they were just as good or even better than the name brand counterparts. I was paying $2.50 for a loaf of that really healthy whole grain bread, which is $4.50 here. I was paying $3.50 for those huge boxes of cereal that I can't even find here. The smaller boxes run at least $4.00 each, usually more. Upon close inspection of the store brand items I've found that sometimes they are actually more expensive or only 10 cents cheaper. I'm not above buying them anyway to save that dime but I've found many of these store brand cereals and such do not taste as good. I'll pay the dime to enjoy the cereal. 

At first I figured I needed to try the other stores to find the best value but now I've been to every grocery store in the area and they are largely the same. They are all overpriced, carry crappy store brand items and the baggers ALWAYS over stuff the bags. I just feel like I'm flushing money down the toilet. How I long for Wegmans to open a store in St. Louis. It isn't likely to happen any time soon. A girl can dream.

Have you noticed an increase in grocery prices too?

Thursday, October 13, 2011

4 Wonderful Years

Four years ago today my husband and I were in Vegas getting married. No, we were not drunk, nor did we elope. We simply wanted to do something small, fun and different. With our families by our side we said our vows and became husband and wife.

We're going to go out and celebrate this weekend since we are both pretty tired during the week. One thing we always do on our anniversary is watch the DVD of the ceremony and look at our pictures from the trip. It's kind of a fun tradition, looking back on that day. We'll do that tonight after dinner and Big Bang Theory.

This month I've had weddings on the mind even more than usual as my cousin is getting married. I see facebook posts from his fiance regularly about the upcoming event next weekend. We can't afford the trip to Virginia for the ceremony but it has me thinking about my own wedding even more in the couple weeks leading up to today's anniversary.

Sitting here in the living room with a migraine I can't help but feel incredibly lucky. I love my husband very much and he loves me. Despite my chronic pain and all the ugliness that surrounds it, we continue to grow closer. Life is pretty hard for me right now but I can't imagine how much harder it would be without my wonderful, loving husband.

Wednesday, October 12, 2011

Paying the Price

I overdid it yesterday and, of course, I'm paying the price today with extra fatigue and lots of pain. Shoot. I guess it will just take a while to learn what exactly my limits are - what a frustrating process.

Though I wanted to just stay home and do nothing all day I had to get up and go to the store for a couple things we'll need for tonight and tomorrow. I could tell right away that I wasn't in a good place because it seemed like every idiot was on the road in front of me and all over at the grocery store. Grocery stores are irritating places to me anyway, but when I'm in a mood - oh boy, watch out.

By the time I returned home I was incredibly tense - a couple hours later I'm still all tense. My muscles are tight but I can't seem to relax them and it is starting to trigger a migraine.

Oh body, why won't you cooperate?!?

Tuesday, October 11, 2011

Little Rupert

Little Rupert has been with us for a couple months now and things are going really well, at least they are for he and I. My husband hasn't exactly been fostering the most positive relationship with our little guy. You see when my husband and I first got together I had a dwarf rabbit named Mr. Miranda who I had purchased from a pet store as a baby. He had a lovely temperament and was raised being handled and loved. By the time my husband came into the picture Mr. Miranda was 4 years old and perfectly willing to allow this new guy into the family fold. I think my husband expected the same thing to happen when we adopted Rupert.

But this is a very different rabbit who spent the first two years of his life under completely unknown conditions. We don't even know for sure how old he is (he kind of looks like an old man when he sits certain ways though). It takes some time to develop a relationship with a rabbit. He has to learn your behaviors and you have to learn his. They are intelligent sensitive animals that need love, respect and kindness.

I'm trying to teach my husband how to build a more positive relationship with Rupert so they can both enjoy one another. Right now it is clear Rupert doesn't care for him. I don't laugh but honestly I think it's kinda funny.

He and I though, we are well on our way to being great friends. He has been known to snuggle up to me when I'm laying in bed at night watching TV so long as my husband is in the other room. He'll sit and let me pet him for long periods of time and he even grinds his teeth when I'm doing it (the equivalent of a cat purring).

I'm absolutely crazy about him. He's super cute, super soft and full of personality.

Okay, I could go on and on but I'm sure this isn't the most interesting post so I'll just stop.

Have any of you ever had, or have a pet rabbit?

October Headache Blog Carnival

Guess what? The October Headache Blog Carnival is now available. The theme this month is in the spirit of Halloween: The scariest migraine/headache experience you have had or witnessed.

Friday, October 7, 2011

Plan B

Today marks 4 weeks since I had my Botox injections. I'm sorry to report that not only have things not gotten better but they have been especially bad. I've really only had a few days that were not really bad or horrible.

URG! I'm SO SICK of this!! I'm sick of medications, doctors, pain, fatigue, limiting my activity and not being able to live the way I want to live.

I think it may be time to start the application process for disability. After all for more than 5 years now I've been trying to get on top of the pain with absolutely no progress. Nothing has worked and it is very possible that this is just how things are going to be. If that's the case then I need to work on plan B too. If I get better and can return to work - great. If not then at least I'm not in this perpetual limbo.

I don't even know where to start. Any advice? Any thoughts?

Thursday, October 6, 2011

You Always Remember Your First

My scariest migraine was my very first one. I was 8 or 9 years old. Today, more than 20 years and countless severe migraines later, I can still remember this first one like it was yesterday.

I hadn't felt well while at school but shortly after returning home the characteristically intense pain of a horrible migraine took hold. My sister and I were home alone but instead of hanging out downstairs with her I had gone up to my room to escape the noise and activity of the TV, my sister and our pets. I closed the shades, got into bed and pulled the covers over my head. The pain was so overwhelming that it didn't take long for me to go from being in pain to being terrified that I was dying. I was lying there in bed crying from both the pain and from the fear.

As a young girl who didn't even know what a migraine was all I could think to do was call my mom. She was a child protection social worker at the time and so the only way to get in touch with her was to call the CP office and ask the receptionist to transfer me to her phone (this was back in the mid 80s so people didn't have cell phones). I crawled down the hall to my mom's room, the nearest phone, and dragged the phone onto the floor with me. While dialing the number I did my best to compose myself so the receptionist wouldn't know that I was crying and asked, with what little dignity I could muster at the time, to speak to my mom by name. I wasn't fooling anyone, of course, but you know how it is when you're little.

My mom's mom had terrible migraines most of her life so she was very familiar with what they were and was able to recognize that this was likely what was happening to me. She tried to reassure me that I wasn't dying but it was pretty hard to believe because it sure felt like I was. She assured me that she was coming home. I hung up and remained crying curled up on the floor of her bedroom until she got home and took me back to bed.

You know, even today when I get a really bad migraine I find a bit of fear swelling inside me. It's still so hard to believe pain that intense isn't the result of something gone horribly wrong in the head. These days I put a lot of effort into not crying because that always makes the pain worse.

Wednesday, October 5, 2011

Life in my Head

I've been doing this workbook that the doc I saw at Mayo's Fibro Clinic suggested. I haven't gotten far yet but already I am liking it. There are several exercises it has me doing to help focus my attention outward as a means of distracting from the inward focuses of pain, worry and such.

I'm supposed to spend time looking at objects in a different way. Really looking at them instead of just glancing and moving on due to familiarity. For instance I don't really look at many objects anymore like my remote control. I know what it is and I know where all the buttons are without really paying any attention to it. This is how it is with most objects in my apartment, or in the store for that matter. I know an apple when I see one, I don't need to pay it much attention. But I'm supposed to start doing this. I'm supposed to start recognizing the little things that differentiate object. The remote for the TV is different from the remote for the DVD player. I'm to really look at and see the parts, the shape, the textures, and such that make it unique. 

I know I life mostly in my head. It's totally true. Hopefully these exercises will help me to begin changing some of that time to outward living. This could be a really positive thing.

I'm super curious now if this is something common with people like us living with chronic pain. Do you tend to spend most of your time in your head?

Monday, October 3, 2011

Rough Day

Today's migraine is especially bad. I woke up not feeling quite right but that happens frequently. My neck, the back and sides of my head hurt pretty bad so the migraine wasn't far behind. I took my rescue meds early but then made the mistake of laying back down in bed. Once under the covers I quickly slipped into a nap that was neither restful nor recuperative.

I woke up several times over the next couple of hours knowing that I should get up and at least make it out into the living room. But it took about 2 1/2 hours before I was actually able to drag myself up. This is why I try not get back into bed once I'm up in the morning. If I have to rest it's just better to do so on the couch, where I can get back up after a short nap.

My rescue meds have done little so I'll have to take another dose here shortly. Today is just a rough day. It happens. It just seems like lately it has been happening more frequently. But I got up, showered and am even doing a load of laundry. I will do some gentle stretches and my relaxation stuff after Dr Oz. This is my road to wellness. I have to have faith that wellness will be at the end of it.

Friday, September 30, 2011


I finally set up a Twitter account after much thought and consideration. I don't know that I have it entirely figured out but I'm having some fun exploring. It's only been a couple of days but it has already inspired me to start thinking about creating a cartoon image of myself to replace my tuberose picture that I'm currently using for everything (blog, chronicbabe profile and now twitter).

Since deciding not to change my blog name to include my Fibro diagnosis I'm feeling a renewed sense of commitment to Migrainista. I guess this is sort of a result of that.

Are any of you on Twitter? I would love to follow you if you are.

Thursday, September 29, 2011

Struggling to Relax

I'm struggling a little with the relaxation. When I first started doing it I found it pretty relaxing though I could tell that progress needed to be made with the deep breathing. Over the last few days I've noticed that every time I sit or lay to do my relaxation CDs one of two things happen. Either I am able to focus on my breathing and the imagery and such, get sleepy and fall asleep, or I find myself unable to focus, my mind just wandering from topic to topic.

This has been pretty frustrating. Part of me thinks I should try doing my relaxation stuff in the morning instead of the afternoon as I currently do but my mornings are usually pretty busy. Maybe I should get more relaxation CDs so I can have more variety to keep me more engaged. Part of me wonders if this is just the challenge of everybody who is new to doing relaxation techniques.

Have any of you struggled like this when trying to practice relaxation techniques? Any suggestions for me?

Tuesday, September 27, 2011

Novelty as Pleasure

I recently saw something on TV, where research was showing that the brain actually interprets novelty as pleasure. If you enjoy taking a walk, you will enjoy it more if you are not always walking the same path. If you enjoy going out for dinner, doing so with different people or going to different places will be more pleasurable. This is an interesting concept.

I tend to be a fairly habitual person but I do notice that I also tend to get sick of doing the same thing over and over. I love playing boggle with my husband but if we play too frequently I will get so sick of it that I won't want to play for months. I guess I never gave it much thought but I suppose I ought to.

Since the onset of chronic pain has forced me out of doing many of the things I used to do I think I have gotten myself into even more of a rut. In the past I have avoided doing many things. More recently I have learned that I can't entirely avoid everything and have made real strides to be more active and take more chances. But still my initial reaction to suggestions is no, I can't or I don't want to. Usually, if I do it anyway, I wind up enjoying myself and being glad I rallied.

Perhaps I should put more effort into planning ahead to do something different at least 4 times a month. We live in a new area and there is so much here to explore. It should be easy to find things to do. Today I'll spend some time making a list of things we can do.

Even as I'm writing about doing this, I'm getting excited about having some new experiences and exploring the St Louis area. Do you have a favorite thing to do? Are you more habitual or spontaneous?

Monday, September 26, 2011


I've been able to keep up the new exercise and relaxation program for more than a week now. It's a lot harder on the weekend days because my husband is home and we try to coordinate our activities. We finally had a chance to sit down and talk about all this new fibro stuff on Saturday and he on board with the program now too. I think this will make it easier for me to do what I need to do.

I've just recently increased my dose of Cymbalta as I continue to titrate to the prescribed dose. This increase has made me much sleepier. I'm finding it difficult to function, especially when sitting still like today when I drove to my husband's grandma's house, which is 30 miles. By the time I had arrived I probably shouldn't have been on the road because I was so sleepy. But, of course, I had to drive home. Yikes. Obviously I made it home safe but I'm still very sleepy and have a migraine coming on.

I know this is a side effect that will get better with time. Perhaps I'll just need to stick a little closer to home in the meantime.

Thursday, September 22, 2011

Starting on the Path to Wellness

The self management tools I learned about at Mayo were all about pacing, moderation and balance. All of the concepts sound obvious and rather simple; it is about all the little things I already knew I should be doing (and sometimes do) but not enough and not consistently.

I'm a bit of a perfectionist, a type A personality. I tend to want to control things. Apparently this is a common trait among people with Fibromyalgia and plays a big part in why doing these simple self-management things can be challenging. Even today, armed with the knowledge and committed to implementation of these techniques, I find myself wishing I didn't have to make any changes, wishing I could just return to my life as it was before chronic pain robbed me of so much.

Making real change is going to be difficult here. It is going to require me to make myself a priority, have uncomfortable conversations with the people in my life to educate them about my needs and I will need to figure out exactly what I'm capable of and really change my life to fit my new parameters; and then stick to it.

So here it is: this is a list of the components that I will need to add and/or modify to help bring my life and pain into balance and control.

1. Relaxation
2. Decrease symptom focused behaviors
3. Stress management
4. Moderation
5. Positive thinking
6. Communication
7. Humor
8. Leisure/Fun
9. Spirituality
10. Exercise
11. Nutrition
12. Sleep Hygiene

In order to be successful I've decided to tackle the two areas that I feel will be easiest to implement. Then once they begin to become habit I will add an additional component and so on. I picked relaxation and exercise first.

Relaxation: I chose to tackle relaxation first for two reasons. First, a study was done with Fibro patients that showed by simply doing 20 minutes of relaxation/day for a period of several weeks by itself was enough to lower their experience of pain. The more they did and the longer, the more the benefit as compared with a group that did it inconsistently and for less than 20 minutes. The second reason was that I received several relaxation CDs in the class that made getting started easy.
My commitment is 30 minutes/once a day for the first month. Then slowly increasing to 20 minutes/twice a day.

Exercise: I also chose to tackle exercise first because it was something that I had already been doing before we moved across the country. What I learned was that this is something that really needs to be done daily, even if the exercise is simply gentle stretches. I received a couple DVDs and several handouts on the types of gentle exercises that are good for Fibro patients during the class as well. I'm finding that between walking the dog and doing some of these gentle exercises that this is going to be doable for me. And honestly, when I was having all that neck pain during my trip I immediately started doing some of the gentle stretches that I learned in class and found that there was some immediate short term benefit when I did them. I was told that doing the exercises regularly over the long-term I can expect to have more benefit.
My commitment is to start slow with 10-20 minutes daily for the first month, then increase to 30 minutes/daily.

I will document my progress here and tell you more as I continue to implement more of these strategies.