I’ve had the same rheumatologist for 4 years, now. He’s seen me working and in pain and working and using a walker and fresh from the hospital and completely, unexplainedly fine, and working again and slowly getting worse. The past few visits he’s been telling me I’m really not that bad, when I just rest and stay unstressed. However, I surprised him today. He started up with the “So, what hurts?” and really not believing me when I said “I’ve been feeling much worse.” I said I have 3-7 migraines a week, and headaches the other days. He really didn’t seem interested in helping that. But then we got to the specific areas of localized pain and, wouldn’t you know it, the part that was the most painful was the shoulder he just gave an injection to 6 weeks ago. Usually, the injections cause a great improvement, so now I am possibly being honest and undramatic when I say “I’ve been feeling worse and have been unable to exercise properly.”

In the end, all my doctors agreed that I cannot return to full-time classroom teaching, and I have forms filled out by all of them to that effect. Hopefully, I will continue to live off the sick leave bank through June 17th (the 100th day of my Sick Leave Bank leave, 6 days before teachers are off-duty but 2 days after kids leave) and before getting let-go. If not, I can start tutoring kids to prep for finals, but I’m hoping to get as much time to get better as possible.

Here’s the skinny on my pain:

Weight gain does not add padding for my joints, back, or tush; it just adds weight to lug around and a greater amount of skin to be overly sensitive.

I can’t sleep on my side, because of both of my hips hurt and both of my shoulders displace a bit, but the weight of my DDs makes my breastbone hurt when I sleep on my back. If I don’t sleep well, I am achier the next day. And so it goes day after day until I finally sleep for over 12 hrs straight, after which I feel awesome and do too much and then can’t sleep because I’d slept so much and the cycle restarts.

Exercise can help if it’s just enough (so a little more than I feel like at first and a lot less than adrenaline helps me want to do once I’ve started). The next day, I can do the same amount. The third day, I can do a little more…  But once I stop or get hurt or do too much, I’m practically back to square one. It’s very difficult.

Meds are not as spectacular as they sound, but they do help.

• Lyrica causes my nervous system to quiet down; like having the lights off and the blinds closed on a sunny day, it helps keep the lights out, but there still is light, or like making the middle part of a swear word silent for TV, you still get the gist but it’s a little less offensive.
• Nabumetone is an all-day NSAID, so I don’t have to take Advil or Aleve. It means I never know I’m sick, because it also works as a fever reducer, but it does turn the pain dial down a notch.
• Flexeril is a muscle relaxant. I only take it at night to relax enough so I can sleep, or on the very very very rare occasion that I’m having horrible muscle spasm pain, especially in my neck. It’s kind of like removing the sword from the wound: it still hurts, but at least it’s not still slicing you.
• Hydrocodone (a.k.a. Vicodin) is a mixed bag. It’s a well-known opium-derived pain reliever that can totally lower my pain and make me feel human and relaxed and wonderful. It can also lower my horrible-level-9 blocked-out pain just enough that I feel it, causing unspeakable discomfort until the meds wear off. Plus, the more frequently you use it, the more you need. Plus, it is potentially habit-forming.
• I have just discovered Lidocaine pads, which are awesome for my ribs, breastbone, and other bonier places. Not as good for inside joints (like shoulders), for my neck (under my hair doesn’t work, for obvious reasons), or even tight muscles unless it’s a nausea-inducing, swollen, pulled-muscle pain. But I do use them up to 3 at a time either to get through a rough time in public wearing a bra or to get to sleep. (A heating pad also works well for my lower back/hips.)
• Klonipin is actually a psychiatric drug for anxiety, but it also relieves stress-induced muscle tension. I always surprise myself if I take half of a 0.5 mg tablet (that’s 1/4 of a milligram) during the day, before a stressful activity, because I just can relax and enjoy myself much more.
• Cymbalta is an antidepressant that is also FDA-approved for people with fibromyalgia because it works on just the reuptake of norepinepherine and has few side effects. Since the ECT, it is all I’ve needed to manage my depression and depression itself can cause all kinds of sleep disturbance and unnecessary stress.
• Seasonique is a 13-week-long birth control pill. It delivers a steady, low dose of hormone over nearly 3 months. This minimizing of fluctuation helps my mood considerably and reduces the amount of PMDD (which is like the raging stereotype of PMS, only worse) and PMDD-related-stress and PMDD-related-pain that I have had to deal with, even on the cheaper 4-week pill. This last cycle, I had a 1 day long, very light period and barely any PMS.

On another note, I read an article about foods that are good for and bad for fibromyalgia pain. Apparently, sugar, aspertame, and other artifical-sweeteners are reported to make pain worse by approximately the same amounts, so I’ll just go with fruit and ignoring articles in which all the test subjects start out believing certain foods effect their pain.

In addition, I’ve discovered that being home and doing very little means that I use fewer points than Weight Watchers allows on a daily basis (thus my weight gain). So now, I just eat as few points as possible with that daily points level as my “splurge.” We’ll see if it works.

That said, I’m going to make an appointment to see an allergist about possible gluten issues and one with an acupuncturist about my migraines, my sinuses, and my fibromyalgia pain.

Apparently, fibromyalgia and gluten sensitivity have a lot of similar features, according to Deirdre Rawlings, writing for FOODS FOR FIBROMYALGIA.

Physical symptoms associated with gluten intolerance and celiac disease include the following:

• Abdominal cramping / bloating
• Abdominal distention
• Appetite increased (to the point of craving)
• Back pain
• Constipation
• Dehydration
• Decreased ability to clot blood
• Diarrhea
• Dry skin
• Edema
• Electrolyte depletion
• Energy loss
• Fatigue
• Gas / flatulence
• Mouth sores or cracks in the corners
• Muscle cramping (especially in the hands and legs)
• Night blindness
• Weakness and lethargy

Emotional states associated with gluten intolerance and celiac disease are:

• Brain fog
• Depression
• Difficulty concentrating
• Disinterested in normal activities
• Irritable
• Mood changes

How many of these sound like a person with fibromyalgia, depression, mild anxiety, and irritable bowel? Exactly. How about if I just list the symptoms I don’t have?

• _____?

Yeah, I’ve got it all. And my weekend (Friday-Sunday) was very, very gluten rich and surprisingly increasingly painful. So I might have a sensitivity, if not an allergy (I also sometimes break out in unexplained rashes, which I currently have), and I ought to ask my doctor to do tests to determine whether this is possible. Until then, I should eat a low-carb diet.

But gluten is sooooo yummy. My favorite foods are ice cream, bread, chocolate, and pasta.

So I could change my diet and possibly turn everything around (and also lose a lot of weight without my favorite foods to tempt me) but lose the comfort of those favorite foods except on rare occasion.

Or I could go on as if this weren’t a possibility.

Yeah, yeah, I know. I made an appointment for next Wednesday (3/10) with my rheumatologist and I will definitely be bringing this up.

Luckily, my “adoptive” grandmother (my husband’s maternal grandmother)’s husband has gluten intolerance and he eats a gluten-free diet, so she could have some great suggestions, and there are many cookbooks and diet books out there.

I don’t know what I’m hoping for. Maybe a notable sensitivity in tests, but not a complete intolerance, giving me the the ability to indulge in very small amounts and leading to a breakthrough turnaround that changes my life. Yeah, that would rock.

Today, I woke up feeling like I had been a sidekick character in an action movie. Everything hurt. As though I’d been running, dodging random rubble, ducking during explosions and gunfire, hiding in an odd crouched position, hanging from ledges 10 stories up…

How do you explain suddenly getting hit by pain one day but feeling only slightly achy but relatively fine the day before ?

How can you cope with needing more than 12 hours of sleep a day because those 12 hours are so interrupted and light?

How can you get anything done if you have a full-blown migraine 4-7 days a week?

How can you work to strengthen muscle if pushing just a little too far for that particular day means major setbacks?

How can you have a daily or weekly routine and plan things around this, or have anyone depend on you?

I want to be a tutor that can be relied upon, which means I’ll have to suck it up and push through a migraine for 2 hrs a day, and even 3 or 4 hrs some days.

I want to be a wife or relative you can count on, but I can’t promise to be able to do a necessary task “tomorrow” or be up to an outing or get-together on a set date.

But the more frustrated or stressed-out I get, worrying about being “up to” this or that, the worse I feel…

Basically, I’m sick and tired of being sick and tired.

Equality in a marriage can be difficult to achieve. When children are part of the equation, it’s much easier to set aside the generally selfish desire for procrastination and good-enough for the greater good. However, when children are not part of the equation, both parties avoid confrontation like an overdue-but-still-acceptable-within-the-next-week term paper, and one party has fibromyalgia, it can be much more difficult.

For years, my husband and I have found ways to avoid sucking it up and doing chores that we didn’t feel a pressing need for, like dusting or cleaning the toilet. It can also be very difficult to accept the onus of responsibility for certain chores, since it tends to become Your Job if you do it more than once.

In January 2007, I had my first major, super-duper flare of  fibromyalgia and Peter took up the slack (or, rather, all the chores) while I wore myself out commuting for an hour or two each day and teaching & planning for 10 more hours. Three years later, I go on leave, unable to work due to my fibromyalgia and migraines, but slowly strengthening and rebuilding my body and, as a part of that, taking my life and home back. Our living room is liveable and mostly clutter-free. I have sorted through all the mail from the past 9 months in the kitchen. We cleaned our bedroom, I have cleaned bathrooms, I am organizing “my” room, and I have done many, many, many loads of laundry. In addition, whenever possible, I do all the grocery shopping and errands. So, basically, I do 3 gym visits and 2 home workouts each week and do an errand or chore each day.

Unfortunately, the snow storm has done a great deal to mess up my life. I know, I know, that sounds very dramatic, but I have done yoga nearly every weekday with a DVD (”Healing Yoga for Aches and Pains”), had migraines nearly every day, and gained 4 lbs. To make this worse, although Peter was snowed-in with me most of last week, he spent two hours unburying his car on Tuesday, helped me with cleaning the bedroom Thursday, went to the supermarket with me for one and a half trips (Tuesday and Friday), and went off to play Magic with his friends on Friday evening and all day Sunday (he worked Saturday). He left the dishwasher unloaded many, many times (as though testing me to see if I will take care of it). I was forbidden from trying to unbury my car and Peter did not touch it after his car was free. His newest reason (as of yesterday) was that he wants to use his own shovel, not borrow one (so I searched online, discovered Lowes, Sears, Home Depot, and Target were all out, and ordered one on Amazon to get here by Friday). Monday, I borrowed Peter’s car, did 25 minutes (2.5 miles) on the recumbent elliptical cardio machine at the gym, got the now-crunchy oil and 3 cracking belts changed on Peter’s car, stopped off at Target and picked up some essentials (unfortunately, they refilled the wrong Rx), filled the tank up with gas, came home to unpack and eat lunch, then injured my neck and started a slow leak on Peter’s car trying to get out of his spot (the last burst of snow, he just backed over, but I didn’t enter the spot straight, so…), went to the doctor, worked myself up to talking to Peter about him giving me freedom to use my car or allow me to find and pay someone to dig me out, and then picked up Peter.

By the time Peter came out and got behind the wheel, he had little air in his passenger-side rear tire. After much drama, we were towed and it was patched, it was obvious I didn’t drive on it while it was flat (else it would have been ruined), but I went from feeling empowered to having to apologize over and over for doing nothing but try to work with what I was given (and saving his car from near-engine-failure due to having less than 50% of its required oil and that which was there was not liquid, but when I told him that during the day, he didn’t see why I was hassling him). I refused to drive his car since then and mine is still behind a 4 ft-high, 2-ft-deep wall of snow. This means I didn’t do the Aqua Aerobics I was so looking forward to since the last time I did it, 2 weeks ago, and I didn’t get to visit a church for Ash Wednesday and get a dirty forehead. I am in desperate need for Rx from Target and we need groceries and I should go to my semi-personal training…

But I don’t want to drive his car. The roads are bad enough without the pressure I feel under to keep his car pristine and, although I want groceries, a part of me feels resentful and frustrated by my limitations, the set-back, and the loss of freedom and feeling safe in my car. So maybe I’m projecting, but I also know that Peter didn’t care enough to make himself uncomfortable in order to give me freedom in a timely fashion. I understand not going out for Valentine’s Day, and not getting a card or flowers… I understand receiving just a good time together for our anniversary. Money’s tight, we’ve been spending plenty of time together… But… Well, sex isn’t the only way you can show affection, and I feel like he’s not trying. (As for that, I’ve been trying to send out signals, but -based on his responses during my impending and then very very short period- it appears that he is only interested if intercourse is possible.) So what was I hoping for? He could have done some of the unsanitary laundry (Stewie was using old laundry as a litterbox). He could have done a little to make my car easier to access, if not drive. He could have shoveled behind and around where he parks, so it’s less tricky. He could have given me a foot massage or given me time to mess with my RockBand avatar and practice before we started playing together. I had a card for him (a general I-Love-You, not specifically V-Day), but I never bothered to fill it out when I saw his attitude Saturday night and Sunday morning.

I know my being home puts additional pressure on Peter to stay employed. However, I continue to receive a paycheck, and I have a very specific set of plans for the future in order to make money and receive disability benefits if possible. Maybe he can help me do the laundry, or clean the area around the kitchen sink, or give me some cash (I have none right now) so I can either pay someone to dig out my car or get a taxi ride. Or maybe he can call the psych group and have them give him an appointment for individual counselling so he might start to be content.

I know that what I really want is to ***POOF*** get my body back to a reasonable weight (sub-140) and have the physical ability to work out the way I want to. I want to teach and then come home and do very little in order to make the house gorgeous and then sit back in my organized, gorgeous, comfy room. I want to be able to enjoy my husband and have him enjoy me. I want to be able to get pregnant and enjoy that pregnancy and then that baby and then, a year or two later, get pregnant again. I want a family and a life. But between migraines, fibro pain, and transport issues, I’m currently living the life of a shut-in (but without the perks of the occasional visitor). 

But right now, just asking for a balance of household responsibilities, and the occasional ”Thank you, I know X was a pain in the butt, so I really appreciate you taking the time and energy to do it,”  is what I need to do…

On Friday, I visited the school I’m currently on leave from, met with the principal, visited the math department, and met my new long-term-sub.

My principal is very understanding but told me that he felt he had to put me on the “First Year’s I Don’t Intend to Keep” list, due to my significant absences. However, he will keep me on this year as long as the sick leave bank pays for my being out (so I need to be reapproved every 20 school days, for up to 100) and  if I do return and perform exceptionally well, that may change. I was very happy he was that honest. Regardless, he also does not anticipate a part-time position being available next year, so I will probably be looking for another position internally and externally for next school year.

The principal also gave me “my” second semester schedule, which includes only 1 co-taught class and added a section of Personal Finance (which is extremely well planned-out, so I just have to make copies and deliver the material). Seeing my classroom, seeing coworkers, and meeting my newest long-term sub (the last sub got a full-time full-benefits position elsewhere so he started with the semester this past week). Since the chemistry teacher’s  back from maternity-leave, her sub was given to my classes and they seem to be in good hands.

The principal and my department head were both extremely clear about the one essential thing that decides my date of return, be it March 1st (half-way through 3rd quarter, with Spring Break at the end of the month as a nice breather) or mid-April (the start of 4th quarter): I must be able to have 100% attendance. Any short-cuts that can minimize my stress are okay, but I must grade things on-time, maintain communication with parents, follow-through, and have a strong classroom presence.

That gave me a lot to think about. Afterwards, rather than going to the gym as planned, I went to Bed, Bath, and Beyond and Target and shopped for 4 hours. Then I finished cleaning the Laundry Room floor free of sticky detergent and carried in and down a 6-foot folding table, garbage can, and 3 laundry bins, successfully creating a useable and comfortable laundry center. Saturday, I was FAR less achy than expected.

After having slept 12 hours last night, I tested my auditory strength. In other words, I turned on the dishwasher and hung out in the living room. Unfortunately, despite all the sleep I had had and all the progress I had otherwise made, I still went into auditory overload in 20 minutes and went upstairs and turned on my iPod and lay in bed. Four hours later, I woke up to Peter calling to say he’d be home from his Magic prerelease event shortly. I still have a headache and am feeling like my ears hurt. After that, I’m losing hope that I can have the tools I need to return to teaching 30 social teenagers even by April.

Before I return, I’ll have to:

1. work on CBT to minimize auditory overloading (in addition to my other CBT goals),
2. put myself in positions in which I’ll have to cope with uncomfortable, changing sounds for long periods of time, and
3. spend a week or two transitioning in as a last-chance test.

I miss teaching so much it hurts, like an ulceration of my soul. I’m not even tutoring right now, which I did while I was working on curriculum in a cubicle last school year. I’m back to being a student in my dreams, now, and am having nightmares almost every time I sleep about can’t-remember-what-classes-I-have-when and behind-on-my-work. 

So I’m going to email my psychologist (and myself) my CBT goals for the next month-plus so I can return to teaching, which are:

• Be in touch with my body’s aches and pains
• Find a way to avoid channeling frustration/stress/anger into my body
• Purposefully tune out body pain and not transmit it into emotions
• Believe that, most of the time, my “Good Enough” is spectacular and perfection is to be avoided
• Minimize auditory overloading or desensitize myself in some way

I will also apply to internal openings, and get my resume together for external openings. The Sick-Leave-Bank application for the month of February is in the mail. In addition, I’m going to go to the gym at least 4 days this week.

This week, I’m also going to work on my room to the point that the floor can be walked on, the table can be removed, and the desk is clear. I will also be organizing/clearing the vanity in the master bathroom.

And, yes, I’ll still have time to rheuminate over how much I miss being an educator. I always do.