The New Normal

At the beginning of this year I was a college professor. Now I am a homeschooling mother.

At the beginning of this year I wore heels and jewelry and makeup every day. Now, I live in pajama pants and nerd t-shirts.

At the beginning of this year I was in pain every day. I still am, but not as much. And I've learned a lot about managing my disease.

About two and a half years ago I was diagnosed with fibromyalgia. I had been symptomatic for over a decade - it started being debilitating in the last few years. And as difficult as dealing with the pain has been, its assault on my mind has been much harder to deal with. They call it "fibro fog" and when that part shows up, my ability to think clearly and logically - such an inherent part of my personality, to think and speak precisely and elegantly - is undermined. I can't follow conversations. I hear other people, but can't process what they are saying. My vocabulary gets locked away and I can't find the words to express the thoughts that are fighting to get out. That's more frustrating to me than the pain.

But this is the new normal. There are days when I stay in my pajamas, because I literally have to choose between putting on jeans and reading stories to my child. I have reduced my outside commitments drastically because I have had to define my priorities, and my husband and my child are always going to come before anything else.

If I was in charge of the world, nothing would start before 1:00pm. It takes me three or four hours to get to the point where I feel like I have the energy to face the world. Rather, I think it would be more correct to say that it takes me three or four hours to accumulate enough energy to face the world. I wake up with an empty fuel tank, and a pretty good idea of how big my fuel tank is going to be for the day. That's a particularly frustrating point for people outside my family to grasp - my ability to deal with the outside world varies widely from day to day. I may be able to go out to the movies one day and seem fine, and the next day I'm going to stay in my pajamas and have someone bring me food. It makes planning ahead difficult. I never know when I am going to have a good day. I really want to take Cooper to Disneyland next year, but how do you plan something like that when your own health is variable? And then you feel guilt for not being able to do all the fun mom things, and that rebounds into making your symptoms worse.

I also have the fun additional quirks of having depression and being severely introverted. Depression makes the pain worse and the pain makes the depression worse, so that's fun. And then with being introverted, having to interact with people is exhausting. So, I might be able to go sit through Les Mis fine (I did and bawled like a baby) but going to a party for the same amount of time, where I'm expected to interact with people, especially people I don't know well, would end with me spending the next day in debilitating pain.

And that's the new normal for me, and for our family. We do the things we can when I can. GeekBoy picks up my slack when I can't do things, and never complains. We may not have the perfectly decorated home, and sometimes the dishes don't get washed for longer than I like to think about, but it works for us.

So I update facebook more than my blog, because posting a sentence or two, or just uploading a picture, is so much easier for me than writing out a thoughtful post. And we have grilled cheese sandwiches for dinner rather than pork loin or gnocchi. But my son reads now, and he didn't do that three months ago. And he skip counts by two for fun, and can do math in his head, and he builds elaborate marble mazes, and loves story hour at the library (my Thursday priority) and gymnastics (my Friday priority) and knows the first three Articles of Faith by memory and the first six apostles and he is kind and generous and thoughtful and sharing and that means I'm doing right by him even if he doesn't speak multiple languages or play a musical instrument. And he knows he is loved. Every minute of the day.

And my husband knows that I love him. And we laugh together, and I go to the movies with him when I can, and watch tv in bed with him when that's all I'm capable of doing, and he is the most amazing person for never letting me feel like he resents me for the additional burdens my health places on him and on our family. He is wonderful. He is my rock, and my guardian, and my best friend.

This is my new normal. It's a good normal. And I'm perfectly happy with it.

I'm a Spoonie

The most accurate description of what living with fibro is like that I have ever read.

Last day of Spring Break

I got the snow tires taken off my car. That pretty much guarantees that we will get a blizzard in the next few days.

Cooper has an appointment tomorrow morning with his pediatrician. I'm pretty sure he's been losing weight on this medication, and I want to discuss where we go from here. The recommended specialist in pediatric ADHD isn't covered by my insurance, but it is by GeekBoy's, so we will gain coverage in about four months. I need to call my insurance tomorrow morning about out of network coverage for seeing the specialist before then, and if we need an official referral. I'm sick of waiting for things to happen for him. This medication has helped with impulse control, but I'm not seeing an improvement in attention. That combined with the weight loss means time to try something new.

I also need to call the school district to follow up on scheduling a speech evaluation for him. At his five year check-up, the pediatrician expressed some concern about his speech. I'm pretty sure that it is just from him being tongue tied for so long; he doesn't know how to shape certain letters. But that's one more thing to work on.

Cooper has a large head, just like both his parents. We went to Target tonight to find new shirts. We actually have to try on each t-shirt to make sure that it fits over his head comfortably. So, all his shirts are big on him, but at least he doesn't complain about the pain they cause going on and off now. Also, thank goodness for polos and henleys. Bonus - button  practice!

We also picked up a horseshoe and badmitton set at Target. More outdoor activities. I am so looking forward to it warming up. Our second daffodil bloomed today. It may be half way through April, but it is still on the chilly beginning of spring here.

Back to campus tomorrow for my last semester. I bought a new funky necklace to wear for the first day of classes on Wednesday. I am such a girl.

Life plans

I resigned my job. Again. My chair refused to accept the letter the first time and told me to take more time to think about it. So yesterday, I resigned my job again. The job I worked for a decade to get. The job that pays significant amounts of money. The job that I love (most of the parts most of the time.) And I feel so relieved. It's like I suddenly have all these opportunities that I can take advantage of, and all these choices that I can make.


I keep flashing back to that scene in You've Got Mail, where Meg Ryan's character is talking about writing a children's book, and that this is something she never would have done if she kept the store. I know a lot of people got irritated with this movie because she falls in love with the guy who put her out of business, but it seems to me that sometimes, our lives are planned so far ahead that we sometimes outgrow the plan and don't change it. Life changes us as we go along, and being willing to embrace the change and give up the plan of the person you used to be and create a new plan for the person you are now is an important ability. I am not willing to buy in to the sunk cost fallacy.

I am not the person I was a decade ago. But every experience I have had in the last decade has lead me to be the person I am now. And frankly, I like the person I am now. I can't regret a single decision I've made because they all taught me something and shaped who I am. And who I am is awesome. I've done what I needed to do at the University. I have learned important things about me. I'm coming to realize that I get bored easily, and once I have mastered something, I feel a need to move on to something new. I'm not content with just being good at something. I have new things to learn and do and create.

The resignation was prompted by my fibromyalgia getting so bad that I literally couldn't do my job and maintain any level of meaningful health, but I am thinking that this is actually a blessing in disguise. So I am going to go from working full-time or more with a substantial income to being a stay at home mother and homeschooling Cooper and dealing with a budget.

And I couldn't be more excited about any of it.

Cooper, I Choose You

I would like to announce that I have knocked two things off of my list. I have a new mattress on the way. Also, I did something completely unexpected, though it was not spontaneous.

I quit my job.

I love my job. No, seriously. I love it. I've worked hard to get where I am. I love my coworkers. I love my students. I love being around these people and the conversations and the energy and feeling like I am making a difference in the world.

The part I don't like is spending every day on painkillers because my job uses up every ounce of energy I have and then draws on my reserves. Weekends for the last semester have been spent sleeping to regain energy. Every night after work involved me slumping into a chair, taking pain medication with my dinner, and having no ability to interact meaningfully with my husband or son. I was on painkillers almost every day for the last six weeks of the semester.

Over Christmas break, I actually got to sleep. I got to rest. I got to relax. I stopped being on painkillers. I laughed all the way down to my soul. I played with my son. I had fantastic sex with my husband. I remembered the person I used to be before I was on pain meds every day.

On one of the last days of break, as GeekBoy and I had a lovely lunch together, he asked me, "Do you really want to go back?" And I started to cry. Because as much as I love the people and the students and teaching, I dreaded going back to the zombie I am during the semester.

Last semester, Cooper got used to being with me for five minutes a day. I couldn't play with him, because if he touched me too hard, it would hurt so bad I couldn't keep from crying out in pain. And then he prayed to ask Heavenly Father to make me better so I could play with him.

When your child prays for something, how can you not do everything in your power to answer his prayers?

And so today, I quit. Academic hiring takes forever, and I don't feel like I can leave the university or the department in the lurch, so my plan is for me to finish out this semester as scheduled, to drop to 75% contract next semester, and then to stop working.

This was the hardest decision I have ever had to make in my life. I feel like I am letting down my department, my university, my students, especially the female ones as I am the only female permanent faculty member in the department, womankind in general, and myself. If only I was stronger/better/faster/more righteous/more something, I would have been able to do everything.

But I can't.

I can't be the mother I want to be or the wife I want to be and keep all the balls in the air. I taught one class today. I advised one student today. I planned one activity today. And I'm tired. And I hurt.

I needed to make a decision, and through a lot of prayer and crying and priesthood blessings, Geekboy and I have made the decision that I am going to be a stay-at-home mom for the next little while. Cooper is going to get a mommy he can play with. And everything is going to be okay.

The Princess and the Pea

Last night was bad. As I was laying in bed, I could feel something digging painfully into my side. I rolled over onto my back so I could look to see what it was. There was nothing on the bed, and as I ran my hand down my side trying to see if I had something under my night shirt, I realized I had been laying on a wrinkle in my shirt.

I have never felt more like a princess in my life.

Yes, this.

Everyone needs to read this.

Doctor appointment

We have run out of treatment options.

Let's put you on something you tried in the past, but at a higher dose.

Do you need a re-fill on your pain meds?

*sigh*

I love my body

1. My body is not actively trying to kill me.
2. My eyes allow me to see beauty every day.
3. I have a beautiful singing voice.
4. My body bore two beautiful children.
5. My ears hear my husband say, "I love you."
6. My body lets me hug my kid, tuck him into bed, and give him good night kisses.
7. I have lips that are the color and shape that most women try to get with lipstick.
8. My fibromyalgia means I am on so many medications that I can't donate blood, so I don't have to feel guilty about not donating.
9. I have gorgeous blue eyes, that I passed on to Cooper.
10. I have three little moles in the center of my back that form a tiny triangle. I'm grateful for that because if I ever get decapitated, I'll still be easy to identify.

Gratitude

1. Chocolate
2. Health Insurance
3. Laughter
4. A healthy kid
5. Pain meds
6. My husband who takes care of me without a complaint
7. The priesthood
8. Home teachers who care
9. Down blankets
10. Avocado
11. Books
12. My family
13. My kindle
14. Temple covenants
15. Glasses
16. Electricity
17. Heaters
18. Purple
19. Passion
20. Snickerdoodles
21. My grandpa who converted to our faith
22. Birdsong
23. Garden swings
24. Sunshine
25. Rain storms
26. Teaching
27. Learning
28. Love
29. Truth
30. Wendell Berry
31. Gainful employment
32. Meaningful employment
33. My mom's fudge
34. Christmas lights
35. Hedgehogs
36. Fuzzy socks
37. Friendship
38. My son that died
39. The resurrection
40. Sharpies
41. Notebooks
42. Donut holes
43. Faith
44. The desire to achieve
45. Candles
46. Cuddling
47. Music that you can sing along to at the top of your lungs
48. Music that inspires
49. Libraries
50. C.S. Lewis
51. Aldo Leopold
52. The Pacific Ocean
53. The Snake River
54. Redwood Trees
55. Bald Eagles
56. My cat
57. The scent of lilac blooming in the spring
58. Cruise control
59. The spot on my husband's stomach that is the perfect pillow for my head when I have had a bad day.
60. Poetry
61. BBC miniseries
62. The internets
63. My siblings
64. My parents
65. Toenail polish 
66. Barefoot weather
67. Craft supplies
68. Bookshelves
69. Streaming video
70. Indoor water fights
71. Falling in love over and over again
72. Inspiration
73. Revelation
74. Snuggling puppies at the pet store to stave off my "need something cute and little" urges
75. A husband who thinks it is sexy when I am smart
76. Happy rocks
77. Purple hippos
78. Having been married long enough to say, "Remember when...?"
79. Lip gloss
80. Massages
81. Nutella
82. Everything bagels with whipped cream cheese
83. Bountiful Baskets
84. Bacon
85. Geek webcomics
86. Fantasy novels
87. Indoor plumbing
88. Cute hair clippies
89. King Benjamin
90. Washing machines and dryers

My fibromyalgia and headache has been worse than normal lately. I have a doctor's appointment Tuesday. We'll see if we can make any more medication changes or if anything else can be done. My body feels like it is holding me hostage anymore, so I am going to see if I can come up with ten things about my body for which I am grateful, because I can't make myself be grateful for the fibromyalgia. Yet.

1. My fingernails that look like I have a french manicure with no effort
2. My intellect
3. Hair that grows superfast so I have no fear about doing weird things to it because if it doesn't work it will just grow back out.
4. 
   

Sorta Productive Saturday!

My fibro was acting up today, so I didn't do much physical stuff. GeekBoy took a bunch of stuff to the DI today, so that was good.

I redesigned a course that I haven't taught in five years today. Wow, that makes it seem like I've been teaching for a long time. I'm really excited about getting to teach it. It's on the presidency, and what an interesting time it's going to be teaching that course right now.

I also synched all the music that I have purchased on three separate computers onto my laptop, so now I have all my happy music in one place.

And, I bought these earrings a few years ago, but I never wore them because the ear wires were super long and dangly and they just bothered me. So today I swapped out the ear wires with ones that I like, so it's like having a brand new pair of earrings.

A decade and a diagnosis

I've had a headache since June of 1998 that has never stopped. I've been to doctors of all sorts. I've been CT scanned, x-rayed, and psycho analyzed. I've been prescribed sinus medication, muscle relaxants and anti-depressants. I've been treated by optometrists, dentists and headache specialists. Nothing worked.

In the last six months my pain has spread throughout the rest of my body. A month ago I went in for a massage, and the massage therapist referred me to a physiatrist because I was hurting so bad she couldn't work on my back. After some poking and prodding, and some lab work, he diagnosed me with fibromyalgia.

It's been an interesting diagnosis to come to terms with. I'd always hoped that sooner or later doctors would come up with a diagnosis so they could make all the pain go away. Now I know that this is a life time condition. They can treat symptoms, but there is no cure. I have to accept that I have physical limitations. I am starting to learn that I am going to have to take care of myself to a degree that I haven't before. Learning to manage my symptoms is going to be a process.

I talked to a friend who was diagnosed with fibromyalgia a few years ago, and she said the hardest thing was to accept that she effectively has a disability. Once she came to terms with that, though, she figured out how to work around it. That's what I'll have to learn how to do now.

This whole thing kind of sucks. It's nice to finally have a diagnosis, though, just so I have a word to put on what I've been feeling for so long. And besides, I got this really cool picture of my brain out of the process.


I think I'll frame it and hang it in my office. Every professor should have a picture of her brain.