Sunday, July 31, 2011
It is not like other conditions or diseases-it's more like a roller coaster than a steady decline, or a bad spell followed by recovery. And, it is different for each person. Everyone has different aches and pains, different side affects, different reactions to medications. I have read accounts of other people that have it on blogs and yahoo groups, Facebook and real books. I actually consider myself fairly lucky, in terms of the symptoms I have, the support system I have, the job I have. Which does not mean I don't know how to throw a humdinger of a pity party though.
Here, in a nutshell, is what it is like to be me, with fibro.
Each day I wake up, after a not-very-restful-night of sleep. I get out of bed and take a few agonizing steps until my legs begin working (which almost ALWAYS happens) while I assess my general body. By the time I have walked the 9 steps to the toilet, I have figured out what, if anything, is hurting (my therapist wants me to keep a journal to figure out any trends).
---At the beginning of my diagnosis, my husband and I would try to figure out what each ache could be attributed to. This is futile, and depressing, because ultimately, you might hear your significant other say, "Maybe you ate too many shrimp this past week", or "Well, you DID work 5 hours yesterday", and then you get more depressed. See? Useless.---
So, I just make a mental note, then go on with the morning. Pretty quickly, I figure out how things are going to go. Some days, I wake up with energy and a happy body (and I will in no uncertain terms ruin that all by overdoing it, to take advantage of feeling so great...), and other days either my body, my mind or more spirit lets me know they are NOT on board with the plans for the day. Even if those plans are just to get up and not swear at the kids. (Can you tell which things failed me THIS morning? Yep, body AND spirit-sorry about the grumpies...).
Each day is a complete reset. Yesterday usually doesn't have much to do with today. Unless I overdid it. Then, I will pay, except on the rare days I don't. See?
Remember the Spoon theory? Each day, you have so many spoons. Each spoon represents your ability to do things, like take a shower, call a friend, drive somewhere. Once you spend all your spoons, you are done for the day, regardless of when you run out of spoons. And, the number of spoons you wake up with is not predetermined. There's no way to know how many you will wake with.
Some days, I have tons of energy, and a little pain. Some days, no pain. Some days, tons of energy, and tons of pain. Or, I feel fine (in my body) but I am grumpy, uncomfortable in my own skin. Yes, I know, that is called depression. I have it, been diagnosed with it, being treated for it. It comes with Fibro.
And, my worst pain (usually) is in my arms-typically my elbows and wrists, sometimes hands. I know others that can't stand the leg pain. Or, back pain. Each person is unique.
So, when I am having a good pain day, it unfortunately has no bearing on whether tomorrow will be a high pain day, or low pain day. Sometimes, the pain is hard to localize. Meaning, my body just has a low-level ache that encompasses everything.
The mental aspect of it sucks too. Not only do I have a raging case of fibro fog-short-term memory loss-but it all really bums me out. I mean, I know i have stuff to be depressed about, but normally I'm a pretty upbeat person. And, sometimes the mind kind of takes over.
Most of all, I think about my body and my health almost all the time. I know that is not healthy, but I also know that it will ease up after some time. My husband keeps telling me that once we get through our first year since my diagnosis (Jan 2011), we will know how we navigated each thing we do, each weather change, each family gathering, each week. From there, I am hoping some of this will begin to come naturally.
Today, I had a great chat with a former colleague who found out she no longer has MS. Yep. NO LONGER HAS IT. Her doctor said that he now believes in miracles. One thing she said stuck with me, and that is that she never wanted to BECOME her disease. So, she told almost no one. Then, when she found out she didn't have it any longer, she realized despite her best efforts, she had become her disease.
I have become, for now, my fibro. My Reynaud's, my RA. It's all me. The person I used to be seems to be gone for now. You know the one-the one that did so much, accomplished tons, was busy busy busy, and crammed everything she could into one day. I would partially swallow, just to bite off more. Now, it seems as if showering AND shaving, along with one trip to the store, and one doctor's appointment is TOO MUCH. And right now, this crap seems to have taken over my life. I know that this, too, shall pass. One day, I may find that, even though the pain is not gone, I do not obsess about each ache. I will go through my days like they are normal, skimming over the discomfort, adapting to each number of spoons as if by rote. I will be able to see the positive in everything more regularly, and my posts will be more about how awesome everything is, despite fibro. Not about how crappy everything has become because of fibro.
I do know that this year will come to an end. I will look back, and I will see a lot of change, a lot of pain, a lot of hurt, and a lot of knowledge. I hope that I can look upon the year and be thankful, more than filled with remorse for the life I have left behind. I hope that I can dream of a day when all this is behind me, when the fibro is gone, when I can choose to tackle too much, plan a lot, be busy, if only for a brief time.
While I miss my old, pain-free life, my quick mind, my seemingly boundless energy, there are things I do not miss.
I don't miss being so busy. I don't miss checking my calendar, only to note that I obligated the entire family to too much, and there is no room in our schedule for a bike ride, a spontaneous dinner with friends, a last-minute opportunity.
It took me a WHILE.
But, with the help of my good pal J, I found a whole bunch of AWESOME on the internet. And, I'm going to share.
Bloggess. She is amazing, she is my new best friend. I haven't told her yet, but she will be totally cool with it, 'cuz she is psycho (in a good way) and weird and irreverent---whatever that means.
And, she has a HUGE metal chicken named Beyonce'. Which gave me a slight case of here worship.
I got over it for a spell, then she went and bought the most wonderful monkey. It was stuffed, and had a funk-ified snout. How come the only things I find at thrift stores are stretchy skirts? Not only is she my new best friend, but I certainly will never miss a day of shopping with her.
Now, I want a monkey.
Real, or stuffed. But, if it is stuffed, I will sneak it into the house and position it in strange places all over the house, with the goal of freaking out the family. In fact, it really doesn't have to be a monkey. Any animal will do.
You can learn to love Bloggess like I do, here.
Wednesday, July 27, 2011
Anyhoooo, after reading this, it really struck a nerve. Princess went to a pretty diverse preschool, and I employ a pretty diverse staff. Even our extended family is diverse. I truly thought there was no need to discuss issues like race, because I naively thought my kids would just "get" that race shouldn't be a basis for judgement, through my actions. I was wrong.
It's like not teaching your child about how to deal in a relationship, because they will see you in a good one. Or, not teaching them about sex, until YOU are ready for them to have the knowledge. Our teen pregnancy rate (all the way up to the top with Bristol Palin) has made it painfully obvious we, as parents need to spend more time TELLING our children what we believe and why. Answer those questions, yes. But, start the discussions, too.
:::Stepping off soapbox:::
This applies to gay and lesbian issues as well. Regardless of how you personally feel, your child is likely to come across people that are gay or lesbian, and "out". How do you want them to respond? What do you want them to know? Keep it simple, but accurate, and reflecting your values. I assure you, they will get their info SOMEWHERE. Shouldn't it be from you?
A while back, I became aware that my children knew nothing about gay or lesbian issues. I was shocked, as I have a few gay or lesbian friends.
On our way to school, Princess and I had this convo:
P: Who is riding with us for the field trip?
Me: Ali, Ruby, Naia, and Naia's mom.
P: Oh, Maddy?
Me: No, Caroline.
P: --confused look--- Huh???
Me: Caroline, Naia's mom.
P: I thought Maddy was Naia's mom.
Me: She is, and so is Caroline. Naia has two moms.
Me: Well, Caroline and Maddy love each other like me and daddy love each other, and they have 3 daughters.
P: Eeew. When I grow up, I'm not going to marry a girl. They have to kiss. that's gross.
Me: Oh. Well, you don't have to.
Me: Is it ok for Caroline and Maddy?
P: ---confused look again--- Ummmm, Yeah. Of course!
Then, a few days ago, overheard between Princess and her friend Julian:
Julian: I'm going to marry Claire.
P: I'm going to marry Tyler. Unless he marries Ali. They like each other too. Then, I will marry Shaye.
J: You can't marry Shaye, she's a girl!
P: Yes I can! I love her, and Maddy and Caroline are two girls and they are married, so I can, too!
OK. Here is what you do. Take some boneless skinless chicken thighs-as many as you need, and you can figure 2 per person or more if you want to have some to put on salads later that week- (more moist than breasts!). Throw them in a bowl. Add to that bowl:
4 lemons, cut up and squeezed (put it all in the bowl)
1 bottle Gluten-free beer (whichever is cheapest at Whole Foods!)
1 onion, sliced up
1-2 cups water
2 small bottles Gluten-free soy sauce
Let it sit in a fridge for 1-2 days to really soak in. Grill as you normally would (charcoal, not gas grill, what kind of fascist do you think I am?). Then, eat. Be first in line, because it goes QUICK.
Monday, July 25, 2011
Today, I, began a new diet. I even invented it. It's called the my-wrists-hurt-too-much-to-shovel-german-chocolate-non-dairy-dessert-into-my-face-diet.
Was I Mussolini in a former life?
This shit ain't funny, and Sky King isn't home to spoon feed me.
At least I can blog from my smart phone via swype.
I have forgotten to close the garage door, I have left my phone at home (yes, seriously), my purse at home, my hair has gone unbrushed, I have put underwear on inside out.
I forget words that typically would have come easy to me before (BF= before fibro) and have had to pantomime, or say, "you know, the thing that fits into the thing".
I put things away in the wrong place-I will find syrup in the fridge, butter in the pantry, cereal in with the bowls.
Most recently, I lost a salad. I know, I am quite skilled at even failing. Let me set the stage:
It's after dinner. There is salad left over. So, I pull out my handy dandy stainless steel container (I'm weird about plastic containers, it turns out) and fill it with salad. But, I was talking to someone at the same time, and not giving the chopped veggies the attention they deserved.
The next day, no salad. I looked high and low, in both fridges. It's gone. And so is the expensive container. Pretty soon, I won't even want to find it. (UPDATE-found it!!!! Under some other salad. Right where I put it, I am sure.)
Also recently, I lost the car key. While camping. It went like this:
Sky King: OK, I'm going over to the ocean, here is my wallet, cell phone, and the key. (Why, oh why does he trust me like this? Has history not served him well???)
Me: Got it. :::puts wallet in glove box in car, puts cell phone on thingy that holds drinks and other crap between seats, key goes in pocket:::
Damn. Where's the key? We are running low on ice/fuel/S'mores ingredients, and I need to run to the local store before they close.
So begins the search. I search high and low, knowing that I have not gone far. SK is still at the ocean, so he is no help, and would probably respond with a well-deserved eye-roll anyways. SO. Not. Helpful.
the chair with the pocket in the side, by the fire-I had been reading
the table by the cooler full of water
the pocket inside the tent where it is SUPPOSED to be
my pockets (didn't I do that already?)
the other table
my purse, which is LARGE
my pockets (what if I missed it the first 2 times?)
my pockets again-I ran out of places to check.
I sit, and sit and sit. Then.
I put lip balm on earlier!!!! I hope..... I hope......
YES!!!!!! There it is, in the bottom of the bath bag, next to the lip balm (of course) and the toothpaste.
When is that neurology appointment?
Sunday, July 24, 2011
Tuesday, July 19, 2011
However, this was all before insomnia became my new bestie. Well, not really a bestie, more like one of those annoying friends that hangs out and follows you, like that little dog in the cartoon from back in the day that would jump over the bulldog's back, yapping, "Well, Spike, watcha wanna do, Spike, huh Spike, Huh?".
Anyways. Insomnia. So, on nights when I toss and turn, Sky King is adamant that I go lay down. And not just the "zone out on the couch with my eyes kinda closed" kind of laying down. He means, in the bed, lights out, drapes closed, under the covers, no cell phone (gasp!!!). And, I always fall asleep, and I am learning to wake up appreciative. Now, when I see children snuggling up for a 3 hour snooze fest, I get jealous.
Sometimes, a 1-hour recharge is just enough to reset my brain.
This means :
Really? Yes, really. You see, nightshade vegetables are known as alkaloids, and can impact nerve-muscle function, as well as effect joint function. In other words, no bueno for those of us with this wonderful connective tissue issues. (HA! Tissue----issue. Pretty clever for a chick with cognitive probs, right?)
What can I NOT have (to be added to the already exhaustive list of crap I don't eat anymore)
- hot sauce
- potato chips (even the Lay's original, that seemed to not have any other things I can't have, and was kind of this great guilty pleasure for me)
- stuff that has potato starch in it-gotta read those labels again!
This crap is getting old, seriously.
With all the other foods I gave up, I had a "Last Supper" or sorts: Ben and Jerry were there, we partied. Now, I'm thinking a major soiree with Red Robin French Fries as the guest of honor. Or In n' Out. Or Wendy's. (Mc D's is out already-those little death sticks contain wheat AND dairy-do they make ANYTHING with whole foods????)
What would your Last Supper be?
Sunday, July 17, 2011
You know, a list of things you KNOW (through research, advice, Dr. orders, experience....) that will improve your situation over the long haul. It *might* look like this:
- Do less
- Eat right
- Avoid people that drive you crazy
- Avoid situations that drive you crazy
- Shop???? (ok, maybe not this one...)
Yesterday, I felt crummy. Like, I wanna go home and lay in bed watching chick flicks all day eating greasy popcorn until my belly hurts, while everyone else goes out and has a fun time AWAY FROM ME.
But, instead of listening to that, I went out with the group with a pasted smile on my face, and pretty soon the smile was genuine. Then, I got up the next day, ate well and exercised. And, I made it over the hump!
Progress can be measured in millimeters, but I believe that a small amount of progress is way better than a popcorn butt. Don't you?
Thursday, July 14, 2011
My wonderful husband took me away to recharge. More on this later...
On our way, we went to some of our favorite places. This post is about my favorite.
Burma Superstar. 2 locations-Oakland and San Francisco. Worth the drive (no matter where you live). Its a cross between Thai and Indian. With a sprinkle of genius.
I started with a Thai Iced Tea. They speak Allergens here, and were happy to make it with soy.
Then, Fermented Tea Leaf Salad. I had to shovel it fast, or else my brain would know I was full, and I wouldn't have room for Nan Gyi Dok, which was also shoveled. And, wonton on the side, rice noodles.
I missed the Samusa soup, can't have gluten. So sad. My husband ate it on my behalf. He's awesome like that.
My stomach hurts, but it was *so* worth it.
You know you do the same thing, don't judge.
Sunday, July 10, 2011
Saturday, July 9, 2011
This year has been no exception. However, it has been markedly different.
- I can't drink. Anti-depressants mixed with depressants (how can WINE be a DEPRESSANT???) equals bad bad bad.
- I have been limited by Sky King to 3 things a week. Houseguests should count as 1 thing per guest per night. I am SOOO over limit.
- I can't do much in the housework department
- I have WAYYYYY less energy
- I get sick of discussing my health, yet get irritated when people don't automatically KNOW and REALIZE I'M JUST NOT UP TO IT/CAN'T DO IT/NEED A BREAK. Yes, they should read my mind, and it IS all about me. Deal with it.
- I have a certain FUN AIMEE reputation to uphold, and it is significantly more difficult without Mojitos.
- I can't eat ranch dip.
However, I am surviving (so far). Here is how:
- Sky King-he is constantly checking in on me, and maintaining working order on everything so that we can all enjoy our time together. Normally, he is FAB, but he has brought FAB to stellar levels of late. Special favors are overdue (TMI, I know...) In fact, he is out right now, with the GUYS, and I am thrilled that he gets a break from me. I wish he wasn't so worried about me, once in a while
- Meditation-My therapist has pushed this on me over and over. Excusing myself for a 20 minute break to my room, with noise-canceling headphones for a meditation session has truly allowed me to hit the reset button on my feelings of being overwhelmed.
- Letting others help-this has been the hardest to adjust to: I'm notorious for doing too much. In the past 2 weeks, I have:
- taken the trash out 0 times
- emptied the dishwasher 1 time
- cooked 2 side dishes
- shopped for groceries 1 time (with assistance!)
- When someone asks, "What can I do to help?" (which someone ALWAYS does), I give them something. Then, I walk away when I am done with what I was doing. I may even delegate that task out, too!
- I have shared with just about everyone what is going on with my health. They have all understood, even more than I could have hoped, and I got over being weird about sharing the info
- I take time for me, to reconnect, center, reset, even if only for a while, and even with a pool full of screaming kids just beyond the door.
- I am more tuned in to my needs. If I am tired, I sleep. No one has given me a hard time for laying around, and schlepping off to bed at 11, when the house is full of guests-they have all been tremendously understanding.
Also, my kids and husband have been amazing. I have not sailed through this without some hard times, but i would rather have some extra hard times and not miss out on all these memories.
My kids LOVE bacon. LOVE. IT.
In fact, Princess wants a shirt that says, "I Pledge Allegiance to Bacon", and that prompted this:
I pledge allegiance to bacon,
of United States of the pan
One pound, in the pan,
with nitrates and sodium for all. Amen.
UPDATE: She instead made her own shirt. It is embellished with sparkles, heart buttons, pink beads and plenty of puffy paint. WAY better than store-bought.