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.

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.

Well, there are three pains keeping me awake right now, yet again.

Number 3: I got my first cavities in my last teeth. In other words, my wisdom teeth are so far back in my mouth that it can be painful to brush them and I wound up with a cavity in two of them (upper right and lower left). I’ve never had a cavity before, so I’m scared, even though they say it’s no big deal and just small surface cavities… I know fillings crack, fall out, the tooth can rot behind the filling and it may need to be redrilled, and I know I’ll continue to have problems with my wisdom teeth because they’re tiny, craggy, and really really far back. But the dentist refuses to pull them as requested and instead is filling them. Ugh.

Number 2: Money. I just spent $5000 between my dentist, old bills from my hospitalization (they sent 12 bills for different days, but the same amount, as well as 8 additional bills and I misunderstood and only paid 1), and car insurance. Our master bath needs to be fixed. We need to keep eating and living in our home and doctors and meds keep costing money. I’m trying not to worry – money from my grandmother will cover that $5000 – but… well, I’m trying not to worry.

Number 1: Physical Pain. Yet again, I can’t sleep because I’m in too much pain. Heat is too overwhelming for the upper back and vicodin wore off. I think it’ll be 1 more vicodin and a few lidocaine patches so I can go back to sleep. Tomorrow, I may just stretch at home and get what sleep I can and wake at noon for my various appointments. I worry that I’ll have to clean up the guest room enough so that I can use it on days when it hurts to think that my motions are limited or I might get any physical pressure on any body part due to pillows, cats, or a stray, lovingly cuddly limb. <sigh>

This is really screwing with my attempts to achieve better sleep hygiene.

Luckily, I’m exhausted and nearly ready to apply that lidocaine, take a vicodin, and curl into bed with my hubby and kitties.