A Strange Romance

As with most dogs, our dog really hates the vacuum. The very suggestion of it's employment is enough to turn her anxiety into overdrive and start a very loud and annoying chain of events. In stark contrast to her disdain for the vacuum, our rabbit seems to have a real fondness for the very same machine. It doesn't seem to matter if it is on or off, he just likes it. Here is a video of our dear sweet Rupert, snuggling with and kissing our vacuum.



He sure is super cute!

I can't help but wonder if Rupert loves the vacuum because it always sends our dog running in fear.

D*** Sun

The sun feels so cruel today. Okay, so admittedly I'm never that keen on lots of bright sunshine but, as every migrainista knows, the sun is much more painful and bothersome during times of high pain. Times like right now when I've had a string of really bad days.

I've gone ahead and drawn my room darkening drapes and am holed up in the migraine cave otherwise known as home but there are areas of our apartment that sun still comes in and there isn't much to do about it. The bathroom for example. We have a big window in the shower of our bathroom so I can't really put these wonderful drapes in there. Avoiding the bathroom is clearly impossible so avoiding the sun entirely is also impossible.

After bumping around the apartment all morning cursing the sun for invading my space, I've finally just resigned to wearing my shades when I have to leave the darkness of the living room. Can hardly wait for the sweet relief of night. Longing even more for this long string of bad days to come to an end.

Imagine

After hearing a bunch of fuss over the PBS drama Downton Abbey I decided to check it out on Netflix. Despite being a little late to the game I've found myself absolutely loving it. Have you seen it yet?

If you haven't I would strongly recommend it. The first season is available streaming instantly. The characters are wonderfully entertaining, the set gorgeous, the lighting beautiful. The only real bummer is that the first season only had 7 episodes. The second season just wrapped up so I'm hoping it will soon be available on Netflix as well.

Generally speaking I'm pretty drawn to these kind of period pieces. I love to imagine what life would have been like as a woman, or as a woman living with chronic pain, or just a human living in a different time in history. So often I'm frustrated with modern life, discouraged by how disconnected I feel with nature. On the other hand I benefit a great deal from many somewhat modern conveniences like indoor plumbing, air-conditioning, heat and, of course, my medications.

There is, of course, no way to really know what it would have been like any time but now, but I do really enjoy imagining.

I'm on Facebook Now!

I'm branching out. Now that I've gotten the hang of this whole Twitter thing (mostly) I've decided to start a Migrainista facebook page. Right now I have one friend but I'm just getting started... I would love to be friends with all you wonderful folks in blogger land. If you would like to look me up, the name I've used is Migrainista Migraine (since they forced me to have a first and last name :). You can also leave me your facebook name and I'll search for you.

Now I just need to get my husband to show me how to link it here to my blog and such...

Still Not Sleeping

You may remember my husband and I tried something different to help us sleep - dark time starting at 9pm. We were turning off all artificial sources of light and using only candles. It has been a couple weeks now and while I have absolutely loved dark time it hasn't really helped either of us sleep better.

Hubby has basically given up on it entirely but I wouldn't mind keeping it up just because I enjoy it so much. I've begun reading a bit before bed and even though I can't get far before my eyes or my brain give out on me it has still been nice. Plus we have spent a lot more time playing games or just sitting around talking, which has been really great.

Even though I know I'll never convince him to start dark time earlier, I do hope I can convince him to continue doing it at least to some degree. There is something romantic and cozy about the candle light. Plus it's migraine friendly.

In the meantime, still trying to figure a way to get better sleep. I've tried Melatonin, deep breathing, counting sheep, dark time...Any ideas?

Two Great Blog Carnival

Two great blog carnivals are now available.

The Headache/Migraine Blog Carnival's February topic is Finding the right migraine doc.

The Chronic Babe Blog Carnival's topic is You Are Loved.

Foggy

My migraine/fibro brain has created a complete block in my ability to think today. I am managing to do a couple simple things around the house this morning and will be going to my biofeedback appointment this afternoon so I am able to go through the motions of tasks I'm familiar with. The problem is that I can't focus or think beyond rote.

Right now many things are off the table. I can't read, write or carry on an engaging conversation. Even watching TV is a bit of a challenge, unless it's a show I don't really need to pay attention to. This happens frequently. Does this happen to you?

Designing for Comfort

As a visual person I put a lot of effort into creating an environment that is aesthetic and kind to my migraines and my Fibromyalgia. I strive to make things comfortable, natural and cozy with a romantic undertone. Thankfully, the colors, textures, furniture and such that I'm naturally drawn to generally fit right into this style.

Styling the house is an ongoing process and is certainly nowhere near done. But, here are some of the things I've done so far:

1. I found that brown and a deep cranberry red are two colors that not only look great together but never cause my eyes or my migraine any kind of strain or pain. By keeping our furniture neutral in color I can use these browns and reds, which are both easy to find, in things like throw blankets, curtains, pills and such.

2. Perhaps the most import change I made in an effort to create a migraine friendly home was putting room darkening curtains up. I frequently find the bright sun blasting into a room very painful. By simply pulling my curtains shut I'm able to block most of that.

3. Lighting design goes hand in hand with those room darkening curtains. I always use a very low wattage bulbs and whenever possible I like to use candle light - real or LED.

4. Smells are often a really big problem just as bright lights are but I have a long history of loving scents in my home space. It took several years of trial and error to find that there are a couple of smells that are migraine kind (or at least kind to most of my migraines). Those kind smells are mint, black cherry and some fresh linen scents.

5. More recently, I've started keeping a couple low maintenance plants. They are relaxing and aesthetic. Plants really add a great sense of life to any space and by extension give my soul a little boost. My plan is to add several more in the coming months.

6. Soft surfaces are also quite important to creating a comfortable space that could support me through my pain. I need soft seating supplemented with lots of pillows and blankets. Doing this provides a big gentle hug to my pain battered body. I always put a lot of pictures on the walls so wherever I am I can the people I love or images that inspire me.

What have you done to create a space that is kind to your pain conditions?

One Woman's Journey to Find a Good Doc

Find a great doctor is truly priceless. Of course this is true for everyone but it becomes even more important when you have a chronic condition. Unfortunately they can be difficult to find and not every area is guaranteed to have one.

Because of all the moving around my husband and I have done since the onset of my chronic migraines, finding a new doc is something I have way more experience at than I would like. Each move brought about tremendous stress as I began searching. Asking somebody about their experiences, or another doctor you trust is the best way to find one. Unfortunately that's not always possible, especially if you have something as complicated as chronic migraines.

I've been pretty lucky. The wonderful local migraine doc I have right now is the direct result of 4 lucky events. Lucky event number 1: When we moved to the DC area I went online to start searching for migraine specialists in the area. My search turned up an interesting article on the Georgetown University Hospital's website about one of their docs who was performing a surgical procedure that was having tremendous results in helping those with chronic migraines. I called his office and was told that I needed to get set up with one of the local neurologists that he works with and be seen there first. They sent me the name of one who was closest to our apartment.

Lucky event number 2: I really liked this doc. She was very professional, on top of things, thorough, understanding and a good listener. We reached a point where it seemed like a good idea to head to Mayo and see someone there to see if there was something she was missing. Yep, she thought this was a great idea and made the referral to someone in Internal Medicine - as that was the entry point to the system.

Lucky event number 3: The Internist I saw, of course, sent me to see someone in the headache clinic. Of course you can't just get an appointment like that in a week. My appointment was scheduled for several months out, but since I had traveled so far I went ahead and sat around the waiting room hoping to score a cancellation or no show appointment. I got one the next day with the wonderful Dr Garza (who I've spoken about before), who agreed to remain my doc even though I lived so far away.

Lucky event number 4: When my husband and I moved to St Louis, Dr Garza told me about a wonderful doc whom he had trained with in school, residency and in the headache clinic. He had nothing but glowing things to say about his colleague and friend here at Washington University Hospital, saying that I would be in the best of hands. Worth a try, don't you think? It has turned out as good as I could have expected. The migraine doc I see now does a great deal of research so he has an inquisitive mind. He is a good listener and a reasonable man.

Many times I have viewed all the moving around we have done as a real negative for someone like me who needs to be followed by a qualified and trusted doc, but when I look back on the path I've taken I think one legitimate strength has been the infusion of fresh eyes overseeing my situation. Each doc has had their own approach, their own strengths and weaknesses. I appreciate having been able to see myself and my condition through these different eyes.

I am Loved

With Valentine's Day right around the corner I have decided not to buy any cards, candy, flowers, or other gifts for anyone. My husband and I will NOT be going out to dinner with most of the rest of the world, nor will we be taking in a show or doing anything really that out of the ordinary. What I'm really saying here is that I don't appreciate the way this holiday has been ruined by corporations who have created all kinds of expectations and ultimately disappointments, sadness and loneliness around the world. 

That being said I've decided to take some time to really celebrate all the wonderful people in my life, whom I love lots. Honestly I don't know where I would be (especially over these past several years since the onset of my chronic pains) without the love, support and kindness from my loved ones. To describe all the ways in which they have helped me throughout my life would take the next 33 years.

My husband, my mom, my extended family, my friends and even my in-laws have shown me such compassion, and patience.

Having had a long history with me, my friends treat me the same way they have always treated me. Not only sticking by me but also simply looking at me like a well person even though they know I'm struggling. I don't think they know any different - and I don't think they could possibly know how much it means to me. It is through their eyes I can see and feel myself the way I used to be. I need to let them know.

My extended family has less history with me but they are a lot of fun to be around. They also know of my struggles though I don't think they really grasp the full extent of them, which is likely for the best. Often times when we have gatherings they are just so enjoyable that I'm completely distracted from everything else. My in-laws are much the same way only they don't really have any history of me prior to the chronic pain. But boy are they fun, understanding and so very kind.

My husband has been my hero. He met shortly after the pain started to get more frequent. The woman he met had a good career, active social life, was very involved in her community and had all kinds of energy and enthusiasm. By the time we got married the ugliness of chronic pain had reared it's ugly head and he wanted to marry me anyway. He helps me to keep moving. He encourages me and he stands by me. He distracts me when I need it and is always willing to laugh with me. He is my best friend and the love of my life. He is my world.

My mom. Wow. Throughout my entire life my mom has been a constant positive force. She has loved me, comforted me, encouraged me, she's been my cheerleader, my caretaker, my chauffeur, my mom. She fed me when I couldn't feed myself, she changed my diapers for crying out loud. She's always saying that if she could have my pain instead of me she would do it and I believe her. There are no words to really describe how much she has meant to me.

I am loved and that has made all the difference.

A Good Start

Yesterday afternoon was my first session of biofeedback. We worked on doing thermal control in an effort to help me increase my blood flow at the onset of a migraine. I love the idea of biofeedback as it is the practice of the the mind/body connection. I believe our minds are extremely powerful and, as a control freak, the idea of being able to control my body in a positive fashion with my mind is very appealing.

That being said, as I sat in this office and learned that I was about to be taught how to increase my surface temperature, my first thought was - this is going to take a while. She took a baseline temperature and then walked me through a short relaxation exercise. Then she took me through three different "warming" mind exercises. After all this she hooked me back up and she had me use one of the warming methods to warm my hands.

This is when the fun began. I watched as my temperature went up and up and up and up. I reached about 91 degrees and it was still rising when our time ran out. Watching this progress take hold so quickly was such a thrill. I'm still not great at the relaxation stuff and can only focus my attention for short periods of time so there is still so much work to be done. I've only just begun.

The thing is, now I not only believe that it can be done, I believe I can do it. The only question is can I reduce my migraines with these techniques.

Have you ever tried biofeedback? Does it help you with your migraines, Fibromyalgia or other chronic pains?

That Thing With Feathers

My migraines have gotten the better of me these past several days and today has been no exception. As often happens during these stretches, very little is getting done. I'm looking around and thinking about all the things that need to be cleaned, straightened, or otherwise attended to. Yet, the couch and the TV have been getting all of my inattention.

I'm attaching my hopes to tomorrow. Telling myself tomorrow will be better. Tomorrow I'll get gas. Tomorrow I'll run my errands. Tomorrow I'll...

Even though my migraine frequency statistics say that tomorrow is more likely to be like today, I feel like I have to hang onto the hope that it will be better. I don't want to give in to the dark shadow of despair that seems to hang around these bad days. I may not always succeed but I do what I can.

Spring, Is That You?

My brain knows that today is only February 2nd and that Spring is still a couple months away. The trouble is my brain isn't doing a very good job of convincing my body of this fact, probably because it's been in the 60s here all week.

I've been going out with just a light jacket or sweatshirt when I take our dog for her afternoon walk and as we walk I see all kinds of open windows. The grass seems to be getting greener and it just feels so very Spring.

Obviously, wintry days are still ahead so I'm trying hard not to get ahead of myself here but it isn't easy. I'm fighting the urge to start planning fun things to do outside because as soon as I do, it will get cold and we will have to wait. I also want to start an indoor herb garden this year to grow some stuff for me and some stuff for our rabbit to eat. The stores haven't even set up their garden centers yet, so that's really what keeps me from getting started right now.

Maybe it's wishful thinking more than anything else. I love Spring and can hardly wait until it arrives for real.

Question

Watching shows like The Doctors and Dr Oz I've noticed that many of the symptoms I experience are mentioned when they talk about various disease states. Symptoms like dizziness, fatigue, various aches and pains are all generic symptoms that can show up in all kinds of illnesses. While I'm confident that right now my symptoms are due to my chronic migraines and Fibromyalgia I sometimes worry that someday, if something else is going on I won't take it seriously because it's normal for me to feel symptoms.

Thankfully I don't obsess about it and this worry only comes up while watching these shows and then quickly goes away. A big part of me believes my body will find a way to let me know if something were to come up.

Do you ever think about this? Does it ever worry you? Have you ever experienced something and thought it was just part of your chronic issues and had it turn out to be something else?