Sunday, May 30, 2010

Kinder Surprise Blues

As mental health awareness month comes to a close I wanted to dedicate one more blog post to the topic. So in that spirit I want to tell you about a fantastic gem that used to bring me many smiles of wonderment and child-like fun: the Kinder Surprise Egg. I believe these gems originate from Germany but were sold all over the world to the delight of the young and the young at heart. Perhaps some of you are familiar with them yourselves.

For those of you who are not, the Kinder Surprise Egg is a hollow chocolate egg (a layer of milk chocolate on the outside and a layer of white chocolate on the inside. There is a seam that runs the lengthwise circumference that, when pushed on, cracks open to reveal a small plastic egg inside. The chocolate treat is good and all, but the real treat is the surprise inside the plastic egg. Inside each egg is an assembly required toy that often has moving parts. The toys are quite clever, intricate and amusing. I get a real kick out of how big and sophisticated some of them are considering all the parts were stuffed into such tiny plastic eggs.

I have a worm with wheels on the underside that when turned animate the head and tail of the as if the worm was actually creeping along. I also have a ladder that has two monkeys that, when released at the top, would climb down. Those two are my favorite but I really love all the toys I've collected over the past 6 years since I discovered them. The Kinder Surprise Eggs provide me with a real pick me up. Whenever I was having a particularly difficult day I would open one up and relish the simple pleasure of the surprise.

You can imagine my horror when shortly after moving to Virginia I learned that the FDA had decided the small toy parts inside this candy was a choking hazard to young children. While it certainly is a choking hazard so are many other toys. That's why you see age specifications on toys. We don't just ban all toys that are choking hazards. I can see how the argument could be made that having the toy in the candy makes it different. However, I can think of lots of candy that is dangerous for young children; like Taffy, Jolly Rancher, suckers and gum to name a few. It makes no sense to single out the Kinder Surprise Egg as dangerous to children and ban it from the country. I'm sad at the loss of this simple boost to my mental health, especially now when my both my physical and mental health are struggling.

Have you ladies ever had a Kinder Surprise Egg?

Friday, May 28, 2010

Self Care or Something Like It

I'm guilty of not being very good at self-care. But I've been very aware of the importance of it, striving to find effective ways to incorporate it into my days for 7 or 8 years now. The rude invasion of chronic pain has made self-care critical to my pain management as well as my mental health. I wish I could report that more than 4 years in I have this self-care thing down. BUT, it's still a struggle. I'm definitely getting better at it as the need progressively heightens. Here are some of my favorite self-care tools and techniques:

1. Using the dishwasher: until about a month ago I washed all our dishes by hand to save water and money. Our dishwasher is really old and definitely not energy efficient but the cost of running it is worth it considering how much pain hand washing causes me. This is not limited to dishwashers; I'll take advantage of any mechanical shortcut that's available.

2. Chatting with a friend online or on the phone: I live about 1000 miles from all my friends back home. To say I miss gathering and chatting with them would be a ridiculous understatement. Since I'm not able to see them I satiate myself with facebook, skype and phone communication. Doing so gives me a glimpse at the me I am underneath all the pain and makes me feel part of something again.

3. Giving myself a pass: On my worst days I grant myself a pass from the usual chores of the day. I take a page from my husband's handbook and decide nothing is so important that it can't wait until tomorrow. This only works on my worst days because normally I guilt myself into doing things like cooking and dishes.

4. Feeding myself healthy food: While eating better hasn't made a difference for my pain, it has helped me feel healthier and more vibrant. I just feel good treating my body well, and maybe in return my body will deal with all the other crap better.

5. Indulge in comedy: I've said it before and I'll say it again, finding things that make me laugh every day is maybe the kindest thing I do for myself. My husband is a big help in this department. He has a wonderful sense of play and can make me laugh even when I don't think I can.

What kinds of self-care things do you do?

Thursday, May 27, 2010

My Pip Hat

As my husband and I strive to move back to the midwest this coming winter, we have decided to take in as much of the east coast as we can while we're still here. Already this spring we've gone down to Monticello and Bull Run, and into the city for cherry blossoms and paddle boating in the Tidal Basin. With the long holiday weekend coming up here we're going to explore some of the sites from the latest Dan Brown book The Lost Symbol, which takes place in DC.

I've been taking lots of pictures so we'll have something to look back on, and of course, sharing them with family and friends on facebook. A theme has emerged in all the pictures - my hat(affectionally referred to it as my pip hat). Because photosensitivity accompanies at all times I've found that adding a hat to my sunglasses makes a real difference. The tricky part was finding a hat that didn't squeeze my tender scalp or create a rub point around the ears. My pip hat fits the bill well and so it can be seen in every picture of me from our mini-adventures. Even though I'm not crazy about it in all the pictures I have no intention of taking it off as we continue to explore. This will just have to be the summer of the pip hat.

Tuesday, May 25, 2010

That Time of Year Again

As we get ready for yet another summer we have to say goodbye to our favorite shows. I love spring but always dread the reruns of summer. I get why TV has seasons but as someone who has so much time to kill at home alone in various stages of pain I would really like to have the variety year round. With the shows I enjoy watching coming to an end for 4 months or more I feel a little dread looming.

I've really enjoyed some of the new shows this season like V, Mercy, Modern Family, Parenthood, and The Middle. Unfortunately V and Mercy will not be returning in the fall. As ridiculous as it may sound, I'm really going to miss the shows that won't be returning; especially Lost. I just started watching Lost last spring on Netflix Watch Instantly. I made it through all 5 seasons by the start of this 6th and final season in March, which just ended this past weekend. I absolutely loved this story, the characters and the very unusual television experience that was Lost.

It does appear there will be some new programming this summer, which I'll try out. I'm glad to see some of the networks offering something more than just reruns. Hopefully this will catch on and become more prevalent.
Will you be missing any shows this summer?

Monday, May 24, 2010

And The Migraine Goes To...

We just had a movie weekend. Netflix had provided us with Avatar and The Hurt Locker at the same time so we hunkered down to watch these two highly rated, award winning films. I'm still very annoyed that we weren't able to see Avatar in theaters - how can they not even offer a non-3-D version? Honestly, there are many people who can't spend 2 hours and 45 minutes watching anything in 3-D. I would be willing to bet money that in the long run this unfortunate trend towards 3-D movies and TV will prove harmful. For the record, I HATE IT!

Anyway, I really loved Avatar. It is one of the better new movies I've seen in quite a while. Despite being rather long I never found myself looking at the clock and hoping it would wrap up already. It was visually and substantially interesting. The Hurt Locker, on the other hand, was a bit of a disappointment. It got all kinds of buzz about being this accurate depiction of life in Iraq for the soldiers who diffuse bombs without being political. The trouble was that in doing so they also didn't really tell a story. In the 2 plus hours we learn about this man who is really good at diffusing bombs and he loves doing it more than anything. That's it. I think maybe without a point of view it just can't be much more than that. I don't understand how it ever won best picture over Avatar. My theory is that it ended up winning simply because it is the first Iraq war film that hasn't been terrible.

The real question was which one would give me a migraine. And the Migraine goes to - The Hurt Locker.

Friday, May 21, 2010

I Don't Know Why I Didn't Think Of This...

Yesterday my mom called with an idea and a plea for me. She wants me to come home for a while and have a comprehensive look at what's going on with me at the clinic. Home is Rochester Minnesota, for those who don't know, this is also the home of the Mayo Clinic. Her beef is the same as my beef has been since leaving home, nothing is connected, doctors don't work together, and I'm left to piecemeal the big picture. I'm not qualified to determine what is missing in this quest to relieve myself of all this pain.

Growing up in a place like Rochester I assumed the Mayo way was how medicine was done in the USA. I've been horrified by what I've seen since. Don't get me wrong, I'm crazy about my neurologist (who just so happens to have been trained at Mayo) and I know there are other great doctors all around the world. What I don't understand is how tried and true best practices can be long ago established but not practiced by so many clinics, hospitals, and private practitioners. Honestly, in this day and age, it is unacceptable laziness. Anyway...

I know a really amazing internist there who is already familiar with my medical history and who could serve as my PCP, directing me to the specialists who could help take a snapshot of my health. They would all communicate with each other. Best of all, it would happen quickly. Mayo is fantastic about getting tests and results quickly. The truth is that my medical issues have become very complicated and that is maybe what Mayo is best at - complicated.

It's so frustrating here. For example I had my MRI, then had to wait 3 weeks to see my doctor for the results. And even then, she hadn't received the results from the hospital where the MRI was done. Even when she got the results she wasn't able to determine what it meant, nor was she able to tell me what sort of a specialist I needed to see to get answers. If I was in Rochester I would have had the results within 24 hours of the test. And they would have set me up with whoever I needed in addition.
I don't know why this never occurred to me...but my mom is right. I'm extremely fortunate that Rochester is my home. I'll have a place to stay and food to eat for as long as I need, courtesy of mom. I would be a fool not to take advantage of this good fortune. Now, I just need to wait a couple more weeks to see doctor and get things started.

I'm excited about the chance to make some quick progress here. I'm also thrilled at the thought of going home for a couple weeks or so. It has been almost 3 years since I've been home and I miss everyone so much.

The anxiety about flying is already taking hold. Maybe my doctor can provide me with some drugs to help me through the flights.

Wednesday, May 19, 2010

Guilty Pleasures

Time for some positivity. I'm thinking a list of some of my guilty pleasures.
  1. 1. Rap music: I am small framed and very pale, very Midwestern. People are always surprised when they learn I like rap music. There's just something so enjoyable about the rhyming and the visual pictures they paint.

  2. 2. Reality TV: There are all kinds of reality shows on and for the most part I try to stay away, but I do watch a few - not because they're great... I don't really know why I enjoy them. Shows like Rock of Love, for example, highlight a segment of the population I don't relate to and have no real interest in. I'm not a big Bret fan so why did I enjoy 3 seasons of it? Why do I like watching Dancing with the Stars, or Celebrity Apprentice...? I'm not sure why, but I do.

  3. The Young and the Restless: I know I've written about Y&R before but it is definitely a guilty pleasure of mine.

  4. Granola: This probably sounds a little crazy but granola is not actually very good for you so , of course, it tastes wonderful. Every now and then I'll sneak a bowl of it for breakfast.

What are some of your guilty pleasures?

Tuesday, May 18, 2010

Adventures in EEG

Today's adventure was a visit to the hospital to get my sleep deprived EEG done. My doctor defined sleep deprived as less than 4 hours of sleep...not easy to do with my nightly regimen of "may cause drowsiness" medications. I managed to keep myself awake until 3am with a combination of late night talk shows and Ally McBeal reruns (so glad it is finally on DVD). And even better, I managed to wake up with my alarm at 6:45am to start getting ready for my appointment. Even though I was glad I managed this difficult task of sleep deprivation I knew the price I would pay this afternoon...migraine. And boy did I.
This has been a rough afternoon to say the least. I took my medications and a short nap only to wake up in my migraine fog and with a wicked sore neck. During the test prep I was laying flat and repeatedly asked to lift and hold my head up. My neck is prone to spasm and pain anyway so I should have anticipated this.

Needless to say I'm really looking forward to going to bed tonight and washing all the crap out of my hair in the morning.

How was your day?

Monday, May 17, 2010

Restless Me

I'm starting to get restless. It seems like the walls of our small apartment are closing in on me. We live in a 3rd floor unit with no balcony so there is just no real access to the outdoors. Sure I get outside most days running errands and/or walking the dog, but when I want to sit down and relax I have to go back inside to the same 4 walls. This is the first place I've lived for any length of time without some outdoor space to enjoy - and it is making me restless.

I thought about rearranging the furniture as a way to just create some visual change. There really isn't much I could change in the bedroom because of the layout and furniture. The living room is pretty restrictive as well but does have more flexibility than the bedroom. I came up with a floor plan and got started only to realize the new arrangement really made the room seem much smaller. I guess the good news is that the original arrangement I set up was the best use of the space. The bad news, of course, is that I'm pretty much stuck with it.

Part of me really wants to move to a different apartment; something bigger so we can close our storage unit, and have a balcony. BUT...moving is a lot of work not to mention expensive. While part of me wants to move, most of me wants to stay and find another way to deal with my restlessness. Now I just need to figure out how.

Do you ladies get restless? What do you do about it?

Friday, May 14, 2010

Wishing To Be

Throughout my entire adult life I've wanted to be a parent. Ideally I would have been married by the time I was 24 or 25 and started having children right away - 2 maybe 3. Life doesn't necessarily play to our ideals though. Instead I married at 29 and even though we started working on having a baby immediately we didn't have any luck. More than two years later we are still childless.

In reality our chances for having a baby are small. But we have decided to go ahead and try for a few months since our chances will only get worse with time. As you can imagine, I have all kinds of fears and doubts about my role in all of this as a result of my health situation. There is no way to know if my migraines will or will not go away during the pregnancy, but I do know I can't take any of my current medications if they persist. The prospect of having all this pain with no safe treatment is daunting. In the event that I do get pregnant and manage to bring my baby into this world I worry about how my chronic pain will impact my parenting. And, of course, I worry about never becoming a parent.

I know that between science and adoption we would be able to become parents. Unfortunately, we can't afford the steep fees associated with either without putting ourselves in serious financial jeopardy. We want to be parents very badly, but not at any cost.

Wanting to be a parent has become so much more complicated than I ever could have imagined it would be; complicated by time, endometriosis, chronic pain and even by money. I've certainly asked myself the "should we" questions in addition to the "can we" questions. There are no real answers to my should or can questions. But I sure do hope that I get the opportunity one day. What a high privilege it would be to raise a child.

Thursday, May 13, 2010

A Bit Out Of Sorts

I'm a bit out of sorts today. When I woke up this morning I felt slightly disoriented and was experiencing double vision. After getting up I noticed that my lips were numb and my hands were tingling. You're probably thinking the same thing I was...sounds like TIA or stroke like symptoms, right? Well my doctor thinks it's this new medication I just started a couple nights that's the end of that medication. But for today I'm still stuck with the tingling limbs and numb lips - just a bit out of sorts.

My plan for moving the living room furniture around will hold for a better day.

Wednesday, May 12, 2010

Mental Health Toolbox

While I may not have the assistance of a therapist I have some tools in my toolbox to help sway myself towards good mental health. Here are a few:

1. Have a date with my husband: Sometimes just getting out of the house and doing something normal, with my husband, among the living, just helps me to feel like I'm a part of that.

2. Give myself a perspective check: I try to regularly sit down with my feelings to check them against logical thought. This evaluation process can help me put things in perspective and weed out the feelings that are justified from those that are overreactions. It can even aid in retraining some of those reactions.

4. Blog: I only recently started this blog, but over the past few months I've noticed that the process of blogging and reading the blogs of others like me has helped me to feel connected. Blogging provides me with a positive task to do and an outlet for all the craziness that's going on.

3. Laugh: Life can just get so darn serious. Laughing really helps me to achieve a more relaxed and content state of mind. I couldn't do this without some laughs.

What tools do you have in your toolbox of good mental health?

Tuesday, May 11, 2010

Mental Health Awareness Month

Since May is mental health awareness month I wanted to take some time to address the topic. I don't know that anyone could suffer with chronic pain for any extended period of time without struggling with some mental health issues. Truthfully, I think almost all people will struggle with at least mild depression at some point in their lives.

My Story, Short Version: My chronic migraine pain has robbed me of my career, and all the money that I would have made doing it, and all the feelings of satisfaction and involvement and contribution to the world...etc. I work so hard to figure this all out and to try to find a solution but so far solutions have eluded me. I live about a 2 or 3 day drive from my friends and family so I don't have the support and distraction from them. Couple my migraines with some of the other health stuff going on like the extensive endometriosis (and recent loss of an ovary) my fertility is sketchy.

I'm aware of the depression and anxiety that has moved into my psyche over the past four plus years of chronic pain. The depression is more of an obvious reaction; it was only recently that I realized the increasing anxiety is a reaction to the same events. I feel like I've lost my sense of control over my life, which means I need to depend more fully on others. Not easy. This manifests in a terrible fear of flying and a need to try to control how everything in the house runs, just to name a couple. I know I need a therapist to help me process everything that's going on right now. I need it and I want it. But I can't afford it. My insurance "covers" mental health expenses but it is a separate deductible from my physical health deductible. Basically I would need to shell out the first $1550 out of pocket before I would see the benefits start. This is in addition to the $4000 I've already paid in premiums and physical deductibles. (that's for this year, of course that will go up next year, and the year after...) Without my job we just can't spare that kind of money. And because I have this "coverage" I don't qualify for assistance. Wouldn't it be nice if we could really get our phyciatric help for 5 cents?

Moving On: Mental health understanding and treatment has come a long way over the years and I believe it will continue to progress. It is my most sincere hope that in my lifetime everyone will have access to quality mental health professionals and can seek the help without the fear of stigma.

Monday, May 10, 2010

Just More Questions

A month of waiting was finally going to come to an end as I set off to my doctor's appointment this morning. I was going to get the long awaited results of the MRI on my jaw and find out if I was going to need surgery. Turns out the folks at the hospital never faxed my doctor the results so we continued on with our appointment while her assistant tried to track them down. This actually ended up giving me the perfect opportunity to present my list of symptoms. She liked the list and because of it she wants to check for little seizures. Interesting.

Finally the results came through and....she wasn't sure what it indicated. It was clear that what she was looking for to indicate surgery was not present, but it seemed there were some real problems. While I'm relieved I won't have to get my jaw joints replaced, now - just more questions. Hopefully these questions will lead us to real answers.

Thursday, May 6, 2010

Dessert Dilemma

I'm a little blue today for no particular reason. It's uncomfortably hot outside but I needed to get some groceries so I ventured out to the store. Walking the aisles I began to crave sugary sweets so I ventured into the bakery where usually everything looks yummy, completely ready to brake my no simple sugar rule. I was a little disappointed and relieved when nothing really looked good enough to justify the expenditure and the broken rule - especially since I had all the ingredients at home for tahini orange cookies (free of the simple sugars I'm not eating).

Now at home, I'm still a little blue, still craving sweets but feeling too lazy to make the cookies.

I'm going to just let myself be blue today and look forward to tomorrow being a better day.

Wednesday, May 5, 2010


I'm so happy about this product I could cry! I realize how silly this may sound but you will soon understand. You see I like things clean and orderly, it gives me feeling of comfort and ease. Since I've been struggling with this chronic pain I'm not able to keep my house the way I used to. How I wish I had more of these comfort and at ease feelings especially in light of the havoc pain has brought.
My biggest nemesis since we moved here has been the white tile and grout in the bath/shower. Within a week of moving in all kinds of mold and mildew was taking over the grout and caulk. I've always had smooth solid surfaces in the past so I wasn't expecting this invasion, nor did I know how to deal with it. I scrubbed with all kinds of cleaners, all kinds of brushes and pads. I was able to make some headway on the grout with a Mr. Clean Magic Eraser, but it required hours of elbow grease. Even with hours of scrubbing nothing helped with the mold or mildew in the caulk.
On a lark I decided to pick up this Kaboom Stain buster Mold & Mildew Stain Remover. The grocery store I shop at just recently started carrying it and I saw that the product made a couple claims that really appealed to me as a migrainista like "no obnoxious fumes" and "no scrubbing." But you know how cleaning products are...all kinds of lofty claims that never really pan out.
I sprayed Kaboom all over the tiles and returned to the couch. After about 10 minutes I got curious and went to check how it was working. You wouldn't believe the excitement and surprise I felt when I saw nothing but white tiles, grout and caulk. All I had to do was spray it on and it cleaned itself!!! I didn't have to deal with overpowering fumes that used to exacerbate my migraines. I didn't have to spend hours scrubbing which caused a sharp increase in hand/arm nerve pain. This morning I got to take my shower in the comfort of the shiny clean of 18 months ago. And perhaps best of all, I now have this magical product that I can continue to use anytime.
I know a cleaning product sounds like a simple domestic thing but this one is so much more than that. Kaboom Stain Buster is a small victory for my well being in a time when victories are hard to come by. If you struggle with your bathroom tiles I hope it can be a victory for you as well.

Blogger Bummer

When I signed in today to check the blogs I follow and add another post to my blog I was very disappointed to discover Blogger had erased my list of blogs I follow and the update area disappeared as well. I'm following quite a few and this blog update area is such a great way to keep on top of things. Booo Blogger for this bummer.

Did this happen to any of you today?

Tuesday, May 4, 2010

A New Approach

My head and my jaw pain have been the focus of my doctor appointments (and blog posts) lately but they are not the only problem. I've had some nerve pain in my arms for several years, but I was taking lots of vitamin E and feeling like it wasn't a big issue. In the last several months the pain has gotten much worse. Now both arms/hands hurt pretty much all the time. When I'm sleeping my entire body tenses and curls. My fists and jaw are clenching, my wrists, elbows, neck, knees, hips and ankles are all bent and tight against my body. I don't know if this is my brain or my muscles that are attacking me like this in my sleep, but the longer this goes on, the more pain my joints are nerves are experiencing.

The trouble is I only have so much time with my doctor during our visits. Even though I think very highly of the way she practices and feel quite comfortable with her now I still find myself out of time before I'm able to address the nerve pain. I want to be respectful of her time - and all the patients waiting for their appointments. I've just been struggling with how to bring this to the forefront without letting the migraines and jaw stuff move the background.

My issues have become more complicated during the past year and I'm need to adjust how my time with the doctor plays out. With my next appointment just 6 days away I've come up with one idea; I want to take a step back and make a list of everything that's going on with me right now. There are some "small" things that may not be so small and could help to paint a more comprehensive picture of what is going on. That sort of thing can only help in treatment, right? Then I could give it to her during my upcoming appointment and so she can either review it then, or look it over before our following appointment. I think this would be better than trying to bring it up on my own...I tend to be wordy in my verbal communications plus my migraine fog slows the process down.
I'm pleased with this idea for the most part. Of course during this upcoming appointment the first order of business will be the results of my MRI. If she wants to recommend surgery I don't know that I'll think to present my list. We'll see...

Saturday, May 1, 2010

Living With The Migraine Fairy

The new blog carnival topic is an interesting one: learning to live with pain. I've been living with chronic migraine pain for just over 4 years now. Even though that is a fair amount of time, most of it was spent in a sort of denial. I say a sort of denial because I was VERY aware of all my pain, the impact it was having on my life and I was actively working towards a fix - But - at the same time I refused to even consider this to be a long term state. I believed each time the doctor wanted to try something new that it would be THE thing that worked. I always spoke about "when I'm feeling better," or "when I get my migraines under control."

After being out of work for about a year I started to realize this may be permanent. Don't get me wrong, I still have hope that I will get my migraines under control. But, after so long, it is hard to deny that it could go either way and I decided to learn how to live anyway.

Pain is a tricky companion to adjust to but here is what I've learned so far:

1. Sometimes a little denial is okay. Living in fear is just no way to live at all yet it is easy to be afraid to do things because you know it will result in pain. For example, I know if I spend a few hours outside doing something I will have a migraine shortly after. But I wanted to enjoy Monticello with my husband a few weeks ago so I did. I let myself live in enough denial to go out and really enjoy myself, but not enough to preclude appropriate migraine preparations for before and after.

2. Learning and accepting the new limitations. Once you know what your body can and cannot handle (and the various shades of gray in between), you can make the necessary accommodations. Learning your new limitations is easy, it is the accepting that is tricky.

3. Learn to say no. This was hard for me, but I learned pretty quickly that it is better to say no upfront when you know you can't handle something than to have to bow out because you are in so much pain during.

4. Be kind, understanding and forgiving of yourself. This is something I am working on right now. While I'm not quite there, I know I shouldn't be so hard on me for the recent failings of my body. I simply can't spend all my "good days" beating myself up over the "bad days."

5. LAUGH as often as you can. Do whatever you need to do to ensure that you laugh every day. It is just as important to your well being as eating and sleeping. Read it, watch it, make it up in your head, look for it, find it - it is that important. You can never have too much, so consume as much as you can find, as often as you can. It comes with a 100% guarantee of making a positive impact. How many of our drugs can say that?

I'm sure there is much more that I'll learn along the way, but this is where I'm at right now. What have you learned from living with your pain?