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.

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.

My doctors all suggest exercise as a necessary part of fibromyalgia pain relief. A good article to read regarding fibromyalgia and exercise is from Web MD. Basically, all studies suggest that lack of exercise leads to more pain and degenerated muscles. The goal is low-impact, low-stress exercise.

My family is oddly insisting that I sit and do NOTHING, which is also what my body keeps asking me to do. My older brother’s wife had Chronic Fatigue Syndrome. Later, she developed Fibromyalgia as well. The pain she had due to muscle degeneration was off the charts. Also, it took something like 10 years for her to get better, and I am not willing to wait that long. So my goal is to not have that happen. Losing weight and improving muscle strength and flexibility will all lessen my pain. If nothing else, it will also make me more in tune with my body.

So I have been working on the Wii for at least 15 minutes each day, unless I do significant exercise that day (a big outing with a lot of walking, such as grocery shopping, would count). But I’m finding Yoga on the Wii to be less than relaxing, regardless of the program. However, tomorrow I will try the regular exercises from Your Shape, and that may be better. Regardless, Wii will be my fitness backup. My primary fitness source will be a local program that gives residents of my town a 60-day membership, complete with two 30-minute personal training sessions each week, freedom to sign up for any of their classes (such as beginner’s yoga, water aerobics) and use their facilities (pools, hot water therapy, fitness equipment, etc.) at any time. I’m hoping to do yoga and water aerobics on the two days that I’m not with a personal trainer, and then I will do Wii’s Your Shape or Wii Fit Plus for 15-30 minutes on the other three days (although any sexual activity may shorten that time, I’ve decided that I will not count it toward my exercise).

I don’t know what will happen in the near or distant future if I’m let go from my job, but I do know that this will help my situation no matter what, and hopefully I can use it in conjunction with CBT to improve my stress and pain management skills, and who can beat such personalized treatment for $60!? As you may know by now, I’m a planner, so at least this is one part of my life that I can control and will get me out of bed and out of the house in the morning.

Although I rarely curse, I think it’s fair to say that I am currently treading the locus of all points where several shit-storms converge.

Thanksgiving had been an interesting holiday. After spending Wednesday seeing my rheumatologist, packing, and picking up provisions, I was rushed into the car with my husband. The Thanksgiving meal was nice and it was great to see my baby brother, as well as my friend Jessi and her family, but I wound up having to take a nap first. Afterwards, my father and I had a long talk about my relationship with my father’s other daughter and our feelings about my younger brother, who died of SIDS when I was 5. Needless to say, a lot of crying occurred. The next day, my older brother visited with his wife and children and I had a sudden attack that appears to have been both a migraine and explosive diarrhea. But 4 hours later, I was okay to join the family and we had a few spectacular hours together. That night, my husband went to bed without saying anything first and I had some time with my parents and “baby” brother (he may be 22 and making a ridiculous amount of money, but he’s my baby brother).  I assured them we wouldn’t leave until I was sure the diarrhea was gone. The next morning, my husband pretty much rushed us out so we could get home to MD by the nightfall, so I didn’t get to spend much relaxing time with my family, but I’ll see them after Christmas, when I visit alone (his family gets us for Christmas, but schools always have off the week before New Years, unlike typical jobs, so I’ve always had time to visit).

Thanksgiving was a wake-up call for several truths:

1. I adore my family (my parents, my brothers, my sister-in-law, my niece and nephews, and yes, my best friend and her parents, too), and wish we all lived within a half-hour drive of each other.
2. Unlike my older brother, my half-sister is very aware of that “half”-status, and at best loves me in her way and has no idea what to do with me and at worst thinks of me as my mother’s daughter more often than not, whenever she does think of me.
3. My fibromyalgia is Out Of Control.
4. My husband and I are no longer a team. In fact, we are each coming to resent each other, partially because neither of us is truly willing to live with my current limitations. However, he has a choice.

That being said, I come home and shortly after discover the ramifications and start to form a plan. There is no choice now, I need to go on disability leave. However, my job isn’t protected under FMLA because I haven’t been working in this school district for at least a year. So, I can get 4/5 of my current salary, with full health benefits, if they keep me on until I get better enough to return, using the Sick Leave Bank (although that’s a big IF and there are significant drawbacks). Or, I can get 1/4 of my current salary through disability insurance if I lose my job and will have to get insurance through my husband. This all means that I’ll have to draw from my nest-egg and/or begin to sell higher-$ things that would cost more to move, like my piano or some book cases or our barely-used table-and-chairs from the kitchen in our Rochester, NY home. Also, the sooner we sell and move, the better; it costs less to live in western-NY than it does to live here, and maybe a 4-bedroom home just isn’t necessary.

After a little chat with my husband one evening, when I just out and said, “Okay, if you feel trapped with me and you want out of this relationship, just say so. A divorce won’t kill me – I can handle it.” His eventual reply was that maybe we can try counseling first. Since then, we still sleep in the same bed and he can still see my fat ass naked. However, we barely talk except to argue or apologize for rudeness, and I’m mentally thinking about how we can divide our possessions and wondering when he’ll decide to sleep in the guest room and how soon he’ll move to Buffalo so I can either downsize or move entirely to NY. I even accidentally got into a conversation that turned into an ex-spouse, breakup discussion that basically came down to one thing: be straight-forward, honest, and timely about it and then there won’t be as many hurt feelings. This teacher had gotten a triple, non-reversible vasectomy because his wife didn’t want to be on the pill anymore and her health coverage through the army only did this kind of vasectomy, which followed intensive, expensive counseling to ensure both were okay with the decision and planning on staying together. Within 3 weeks of the procedure, she asked for a divorce. That’s just cruel. Along not-so-severe lines, I’d rather just know that my husband was not supportive of my situation and would just do what he could, than have hurt and insult and blame stacking up until there was an explosion. At the same time, we have been together for over 10 years and married for nearly 6 years; we have two 7.5-year-old cats together. It will be hard when we’ve basically become adults together.

I do have some supportive friends and a very supportive family and my bosses just laid out that I need to leave completely until I can be back completely. I’ve found a new psychologist for myself, since my current psych was not working out for me (he asked me after I poured out all that I’ve been dealing with, “So what do you want from me?” and this was the first time I’d seen him in a month, because I’d had trouble getting in touch with him and making an appointment). After our next session, he’ll determine the best couple’s therapist for me and I’ll make an appointment with the psychiatrist in his group as well – they all discuss what’s going on with their patients and make a plan together, so that will be good.

Oddly, I don’t feel depressed so much as I feel down. I don’t feel hopeless and helpless. I just feel like life is sucking right now and I need to start approaching my life differently. My goal for this leave is to stop sticking my head in the sand being a workaholic/sleepaholic (I work 11 hrs, relax 2 hrs, sleep 11 hrs) and actually work on having a life that I can balance my work with. I want to start reading again, play more piano, write, and work on being a better friend/sister/daughter/aunt, etc…  “Wife” had been at the front of that list of better roles, but I’ll just try to pull my weight and work on myself and maybe our relationship will improve with that.