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.