virtual book tour: Women, Work, and Autoimmune Disease

Today kicks off the virtual book tour for a must-read book, written by Rosalind Joffe and Joan Friedlander: Women, Work, and Autoimmune Disease: Keep Working, Girlfriend!

Rosalind writes blogs at Working With Chronic Illness and Keep Working, Girlfriend, along with her web-based business, CI Coach. All are wonderful resources for anyone living and working with chronic illness.

For today's guest post, I asked Rosalind to talk about the five best and five worst things a woman with chronic illness can do for her career. All of these ideas, and much more, can be found in her book, so be sure to check it out. Tomorrow, stop by fellow Migraine blogger Diana Lee's Somebody Heal Me for the next stop on the virtual book tour.

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My Top Five suggestions for managing your chronic illness in the workplace

1. Stay on top of the situation. When chronic illness (CI) symptoms are causing you to screw up in your job because of a CI, have a “sit down” with yourself and figure out what you want to have happen and what you can do to make that happen.

2. Get help when you need it. When you can’t accomplish a task on time or on your own, shut down the self critic and replace it with the following questions: what do I need, who can help me best, and what should I say when I ask?

3. Be mindful of how you discuss your CI. When you have to talk about your CI with colleagues, supervisors or people who work for you, keep your emotions to yourself (even if someone asks how you’re doing).

4. Be as sure as you can be that you can do the job. When you take a new job, keep your CI symptoms in mind and be realistic about whether this is something you can do on your good days and bad. You’re not in the astrology business so try to predict the future. But you can base your best guess on what you know rather than fears or wishful thinking.

5. Develop your talents. The best insurance you can have (and we with CI know that nothing is for sure) is to be the best you can be at what you do. When your talents add value, people will be more likely to support you when the CI is “acting up”.

My Top Five worst things you can do to manage your chronic illness in the workplace

1. Incessantly referring to chronic illness and talking endlessly and mindlessly about living with a CI, will cause people to tune you out. When you talk about your CI to anyone and everyone who will listen JUST because it’s on your mind, people stop listening. Even worse, they can easily start to doubt that you can really be as sick as you think.

2. Take a two week vacation one week after you return from a short disability leave. You could create bad feelings, Especially if everyone around you hustled to get your work done.

3. Wait until you’ve screwed up royally over and over again before you tell your supervisor that you can’t do the job in the time frame it’s expected because the CI is getting in the way.

4. Never volunteer for the extra assignment, offer to help others when they need it or do anything that shows that you’re a team player.

5. Keep to yourself and fail to develop relationships with co-workers because you feel ashamed, guilty or worry that someone will discover you live with a CI.

Rosalind, president of cicoach.com (http://cicoach.com), is the coauthor of Women, Work and Autoimmune Disease: Keep Working, Girlfriend! and her blog is http://WorkingWithChronicIllness.com Feel free to reproduce or share the Top 5 list as long as you give her attribution.

recovery

Much like National Headache Awareness Week back in June, I've been extra aware of my head pain this week, which happens to be both Invisible Chronic Illness Awareness Week and Migraine Awareness Week (in the UK). And I've spent this noteworthy week being rather ill, between a rather tall stack of Migraine triggers and some medical issues.

First, my family (Mom and sister) came to visit me. They live in Massachusetts, so it's an all-too-rare treat to have them come visit. Like me, they are both Migraineurs, so they "get it" about being sick and in pain, though neither of them have suffered with the severity of Migraine that I have.

My sister, mom and I went to Port Townsend for the long Labor Day weekend, to visit a pretty Victorian town none of us have seen, and to drive up to Hurricane Ridge at Olympic National Park. We drove up on Friday afternoon, returning on Monday. While it was a very laid-back trip and we cooked in the kitchen in our hotel room, it was still traveling, which always stresses out my body.

Tuesday through Friday, I was back at work, dealing with the typical stack of work triggers: fluorescent lighting, computer screen, food smells and noise. Being tired from the long weekend away made me more susceptible to my triggers, though I had a few days of recuperation before another long weekend. My mom spent the week traveling again, while my sister left on Monday night. In addition, the Lyrica I had been trialing as preventive #7 began giving me increasingly intolerable side effects, so with Dr E's okay I discontinued it on Friday, after several weeks of side effects.

Friday afternoon, DBF, my mom and I looked at a house before driving to Lake Chelan. This was more of a rush trip involving a lot of driving. By the time I got home Sunday night, I was completely worn out and dreading another week of work.

During my family's visit and our various trips around Washington state, the effectiveness of the Botox treatment I had back in June had been wearing off, meaning more pain and more Migraine symptoms. Luckily, Monday afternoon was my second round of Botox injections, and I was hoping for relief similar to my first treatment.

Wrong! This time, the injections hurt much more. Monday night, I felt awful. Bad enough that I called my doctor on Tuesday morning to report in about my side effects. Dr E called back quickly, and after asking me a few questions determined that I may be having a mild allergic reaction to the Botox. Great! He had prescribed a new preventive for me to try, Inderal, but suggested I hold off on it until I felt completely back to normal.

As if that stack of triggers and side effects wasn't high enough, I had a stressful week at work. My company laid off 20 employees on Tuesday, which amounts to about 5% of our firm. While we were very fortunate that my company was (and still is) financially stable, these employees were not laid off for performance issues. Our senior partners handled it well, holding four separate open discussions with the various teams and entire firm, inviting questions from everyone. They recognized how stressful the layoffs would be for all of us, but the shock of losing good employees (and friends) was difficult on everyone.

And because this stack wasn't quite tall enough yet, I worked 9-hour days on Tuesday, Wednesday and Thursday to try to make up for the work time I missed on Friday and Monday. So now, I'm in recovery mode.

What I need to remember in facing these types of life situations is that, first and foremost, I need to take care of myself. In my healthier years, I could handle the sort of stress that travel and work would put on my body without much trouble. But now that my Migraines are out of control again and I spend all of my time being sick, I need to take extra good care of myself during stressful periods. I've really done a number on myself, and I'm hoping that this weekend is enough to recover (though it may well not be).

I have been very frustrated and upset this week. Dealing with another failed preventive and an allergic reaction are difficult enough in my day-to-day life, but adding all this stress on top of it just threw my body for a loop. I had to leave work early today, after spending much of the day in a painful haze, to come home and nap. DBF woke me up for dinner, and after eating, I'm starting to feel less like road kill. I still feel incredibly dizzy, nauseous, achy (both Migraine- and Botox-related) and exhausted.

I had some plans this weekend, to go look at houses and run some errands. In all likelihood, I will have to postpone these plans and spend the weekend on the couch, trying to catch up on sleep and renew my energy reserves.

Megan over at Free My Brain wrote this week about her Migraines being invisible to herself. After these two weeks of overstressing my body and not taking enough recovery time, I find myself in the same boat. Acceptance of illness is a difficult path, and I find myself repeatedly learning the same lessons.

So, for the final few days of Invisible Chronic Illness Awareness Week, I plan to be much more aware of my own illness, and treat myself with the patience and compassion I deserve.

Be well,
MJ

overcommitted and overwhelmed

I've been having a tough time lately. I feel like I say that a lot, but it's the truth. Dealing with my Migraine is difficult enough; add in the normal life stuff and it gets to be too much.

It is all I can do right now to go to work for 40 hours a week, and keep up basic maintenance of my health: sleep, diet, drugs. Add to that, the supplementary health stuff: doctor's appointments, phone calls to my doctors, managing my mental health, support group (MMC forums). Then all the "normal" stuff: relationships with DBF and my family, errands, bills, money, social obligations, email, reading blogs.

It's enough to make anyone tear their hair out, especially when it seems like tearing my hair out may temporarily distract from the pain of my Migraine.

I haven't even added into that list the things I want to do: vacations, trips, dinners out with friends, volunteering. Anything that will get me off the couch and out of the apartment.

Over and over, my body tells me: NO. You cannot do this or you will pay.

Back in February, the president-elect of our local chapter of AIA (American Institute of Architects) called me up and offered me the nomination as Associate Director of the Board. This is a very prestigious position, rarely offered to someone as young as me. My responsibilities include helping to steer the direction of our local AIA for my one-year term, participating in monthly meetings as well as meetings on hot-button issues, attending frequent AIA events, representing the young contingent of the AIA, and coming up with a project to work on during my one-year term. I accepted this position without hesitation, as it offers me an opportunity I've been dreaming of. Uncontested, I was officially recognized as one of the new Directors in June, and my term starts in September.

But how on earth will I be able to do this?

I had hoped, prayed, expected, assumed that by September my health will be better. But it won't be. It isn't. I can barely squeeze out a 40-hour week most weeks. How can I work as much as I'm supposed to and put in all this volunteer time? I don't think that I can.

When I was in college, pursuing my degree in architecture, I pushed myself beyond all reasonable limits to finish studio projects, finish research papers, finish courses. I graduated on time (5 years) with a double-minor, a year abroad, and enough credits for 7 years' worth of schooling. I look at that, I look at all I achieved, and I look at now. I should be able to just push through this, I think to myself. Look at all those all-nighters in school. Look at the impossible things I accomplished. Why can't I just do that now?

Because I'm sick. Even though my health first spiraled out of control in college (third year), the Topamax my first neuro prescribed worked within 2 weeks. And it worked for me the whole time I took it in college.

The obvious answer here is that when I'm healthy, I can just push through and accomplish anything I need to. When I'm sick, I can't. I need to lower my expectations and stop holding myself to such impossibly high standards. But it feels like I'm giving up.

I'm really torn about this AIA thing. I desperately want the chance to make a difference in the architectural community in my city. I would love the experience of working one-on-one with some of the (local) tops in the field. I already know what project I want to work on. But is it fair to myself, to AIA, if I don't have energy to dedicate to what I need to do? Will giving up on this feel too much like giving up? So many questions, and not enough answers.

I've already streamlined a lot of my life, gotten rid of many extraneous stresses. I've gradually withdrawn other committments, postponed my licensing exam schedule so I have more time to find a good treatment plan. I've given up so much and still my body says, not enough.

The one thing I want more than anything else, is a return to some bit of normalcy in my life. Everything feels chaotic, subject to the whims of my head. Will today be a good day or bad day? Will the Migraine control everything, or can I ignore it for a while. And the underlying question: when will I break this Migraine? When will the pain stop? Will I have to live with this screwdriver in my eye socket for the rest of my life?

If I don't do this now, when will it ever happen? What if I never get better?


(Much more to write, but my head is telling me it's time to get off the computer. The story of my life.)

Be well,
MJ

choices, decisions and resentment

Having such chronic migraines means, at this point in my life, I'm living with a lot of resentment.

I've talked before about the resentment I feel for my disease itself. Migraines have stolen much from me, and I resent that this disease has taken up so much space in my life. Usually I can use this resentment and anger to keep me going on my path toward getting better.

But I find other resentment in my life as well, which I don't talk about much. In the spirit of honesty and sharing with my readers, however, I'll talk about it now. And that is the resentment I feel toward other people. Before you close your browser window in disgust, please do read on.

It's not that I resent specific people. It's more that I resent (and envy) the carelessness of good health. I see it all the time, the ease with which many others live their lives, blissfully ignorant of the continual attentiveness that is chronic illness.

Most of my energy during the day goes to thinking about and coping with the little challenges I come across. I'll reference here the Spoon Theory, written by Christine Miserandino, the founder of But You Don't Look Sick?, a wonderful site for anyone with invisible illness. Anyone with chronic illness knows the very real challenge of living within your limitations, learning to conserve and use your energy (spoons) wisely. I've found that just to conserve my spoons, or to prevent spending them too quickly, in itself takes a lot of spoons.

This is something that is very difficult for people without chronic illness to understand. I don't (usually) resent them for it, but I do envy the decisions they don't have to make.

A friend of mine once described it like this:

On choice:

Most people simply make their choices and leave the momentous decisions for things like buying a house. It sounds to me like the difference is that simple choices become decisions for you. So in that sense you don't get choices. You're forced to make decisions, and the weight of each decision carries with it a stress load quite unlike that of mere choices. And since other folks don't have that load, they really aren't likely to get how the process affects every other aspect of life. "Well, why can't you just...?" You can never "just..." anything.

And that is the essence of this second type of resentment. I can never "just" anything.

A perfect example: my team is having a BBQ tomorrow after work. Deciding whether or not DBF and I will go has been putting a lot of stress on me. Do I have enough spoons left from the week to do this extra activity on Friday? Will I have the energy to socialize? What will I do about food? I can't eat any of the food being served (hamburger, hot dog, veggie burger) because of my strict diet. Will I have a good time if I go? What won't I be able to do this weekend if I decide to go to the BBQ? How will this affect my work next week - will I have enough energy to make it through the full 40 hours? Questions like this have been buzzing in my head all week. There's no easy answer. I want to go, but I don't know if the cost to me will be worth it. (And I'm not even talking about the $10/person contribution to the food/beer budget.)

Most of the people on my team have not had to face these questions. If I was healthy, it would "just" be a matter of, is my schedule clear? Do I want to go? Yes + yes = go to BBQ.

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Next Wednesday is my 25th birthday, the third birthday I'll have during this current bad migraine cycle. Never did I think I would be sick for so long. I'm trying not to be depressed about it. I will get to spend it with DBF, a wonderful, caring man who has been through so much with me on this confusing and difficult journey. And he's buying me ice cream cake. It's completely against my diet, but I'm not willing to skip it completely. I've had to give up so much already that I just need a slice of normalcy.

Have a good weekend, everyone.


Be well,
MJ

the irony of National Headache Awareness Week

It's ironic that National Headache Awareness Week would be a bad head week for me, but so it goes. Had I been feeling better, I could have publicized it at the beginning of the week, and perhaps even watched the new NHF youtube channel videos.

Instead, I've spent the week absolutely miserable, with severe head pain and the whole list of my typical migraine symptoms: vertigo, nausea, stomach pain, diarrhea, phonophobia, photophobia, cutaneous allodynia, sensitivity to smell, depression, difficulty concentrating.

Part of the problem is that I finished a 10-day course of prednisone, which Dr E had prescribed for me in hopes of breaking my months-long migraine. I took a 5-day "burst" of the steroid, followed by a 5-day taper, and I had thought my body was dealing with the drug pretty well. I had some unpleasant side effects that were tolerable. But this week, after coming off of it, was terrible. I had horrid body aches and no energy, making me even more sympathetic to my fibro friends out there.

Oh yeah, and the prednisone didn't break my migraine. I did get five days of low pain, but as soon as I started tapering, my pain climbed right back to where it always is.

Add to that, I'm getting more side effects from the Topamax again, which I don't understand. I've been taking a 50 mg dose - a low dose, even for a migraineur - since March. Suddenly, I'm having stomach pains, worse nausea, tremors and dizziness again. And a new one: muscle spasms. My body is acting like I just started taking the Topa, even though I've been on it for several months now.

Luckily, I will be seeing Dr E on Monday. I'm scheduled for my first Botox treatment. I didn't get a phone call from his office today, so presumably my insurance has approved the treatment. (I will be calling first thing on Monday to double-check.) When I see him, I will let him know the trouble I've been having this week, and ask him about the reappearance of the Topa side effects.

So, in honor of NHAW, I've been more aware than ever of the impact migraine disease has on my life. All week I struggled to get through work, and couldn't in fact work a full 8-hour day any day this week. Today I called out; even though my head pain wasn't as bad as it had been earlier in the week, my stomach was in bad shape and I had severe menstrual cramps to boot. And I was just plain tired.

I plan to spend the weekend recuperating - just like I do every weekend. But after such a bad head week, it's even more important to refocus on my body's needs and take care of myself. Everything else will have to wait. Including those youtube videos.

Be well,
MJ

photophobia and fluorescent lighting: a quest

Like many other migraineurs, I suffer from photophobia, a sensitivity to light. My photophobia is constant, and gets worse as my pain gets worse, but since I've been living with this particular migraine since November, the photophobia has been particularly stubborn as well.

Also like many other migraineurs, I cannot tolerate fluorescent lighting. Part of the issue is the color of the light itself: the fluorescents at my office are tinted a warmer yellow, which I can live with, as opposed to the horrendous (and cheaper) blue-white found in many stores. These fluorescents not only immediately worsen my migraine pain, dizziness and nausea, but also have an unpleasant tendency of sending me running to the nearest bathroom with soupey poopies within 15 minutes. If my office had this blue-white lighting, I would have had to leave my job already.

Unfortunately, the tint is not the entire story. The imperceptible flicker of fluorescents is enough to drive the sensitive migraine brain wacko. This makes it a particularly difficult problem to deal with. Many of us cope by wearing sunglasses, or tinted glasses, but this is not always a viable option for me since I work in a field where I regularly meet with clients and consultants, so wearing sunglasses to these meetings would not be appropriate. It also doesn't do anything for the flicker, really, just gives our eyes a break from the brightness of the lighting.

What is a migraineur to do?

Fortunately, the woman in charge of office services at my office is also a migraineur, so she was able to help me get the fixtures over my cube turned off. This makes it possible for me to get through a workday without being miserable. It does nothing, however, for the fluorescents in our conference rooms or in the rest of our office.

Some months ago, I came across mention of the use of Nike Maxsight tinted contact lenses as a way to ease light sensitivity in Dr Alexander Mauskop's Headache NewsBlog. This reference simmered in the back of my head for a while, and I have since come across other mentions of the use of contacts to address light sensitivity. The Migraine Girl asked in an entry about MigraLens and Irlen contacts specifically for combating fluorescent lighting sensitivity.

After much Googling, I finally scheduled an appointment with my ophthalmologist when I discovered that his office carries the Nike lenses. I'll also note here that Nike discontinued these lenses a few months ago, but I figured I could at least schedule the appointment and talk with the eye doc and see if he had any suggestions. Who knows, the Nike lenses could be my saviors, and I would just order them in bulk from an internet supplier.

I went in for my appointment two and a half weeks ago with my eye doc, and explained my problem. He thought for a few minutes, then came out with a surprising statement - he had a few ideas, and he wasn't sure what would work but he was willing to work with me until we found a reasonable solution. He specializes in contact lenses, so I felt somewhat confident in his statement. He had some trial Nike lenses at his other office that he would look through to see if he could find any for me, and he would also dig up some other trial tinted lenses - just regular cosmetic FreshLook lenses with a slight tint - for me to try.

By the end of that week, he had the Nike lenses ready for me. He scheduled a two-week follow-up appointment with me, to give me time to try out the lenses.

First reaction: they make me look like some sort of demonic beastie (migraine beastie, maybe?). The ones I tried are the grey-green tint, which actually wash my eyes out to black. A very strange effect, but one I would put up with if they solved the fluorescent lighting problem. I would even put up with the startled coworkers.

Unfortunately, I only made it a few days with the lenses. I discovered my brain started to freak out after wearing them for about six hours. The tinting in them was too strange a color for all-day wear. (Imagine the color of bug lights - that's what color these lenses made everything.) This tint was especially pronounced on cloudy days, and we have a lot of those here in the Pacific Northwest. I also had a run of several severe migraine days, which may or may not be related to the lenses. They did help out a lot with sunlight though, when worn under my regular sunglasses, so it wasn't a total loss.

I had my follow-up appointment with my eye doc today. He offered me another, much more expensive option, which is prosthetic lenses. With these custom lenses, he can control exactly how much light is allowed into my eye, and I will not see any sort of a tint. He took some measurements of my eyes for these lenses and told me my pupils seem to dilate more than they should (not surprising - they also dilate unevenly depending on the severity of my migraine).

I feel these are a better option for me than the Nike lenses, but custom = expensive. He's taking a look into pricing for me and his office will call before they order them. The price tag should come in somewhere under $1000 - I may be able to get some medical insurance coverage for this, but it's not likely. (My vision insurance is basically only enough to cover my annual exam.)

I will be seeing my new headache specialist in just under a month, and I plan to pick his brain about this, at least because I want to see if he'll write a letter of medical necessity. He may have some other ideas too, who knows. The nice thing about these lenses is that they will reduce the amount of light entering my eyes in the periphery, which I think may help quite a bit with the fluorescent lighting issue. It won't solve it - really, nothing short of avoidance or removal will - but it's something.

Before I make this much of an investment, I will be doing some thinking about this. A part of me had hoped that my migraines would resolve somewhat quickly so I wouldn't have to deal with the photophobia/fluorescent lighting issue. But that is not likely to happen, and I need to find some ways to make my life more livable in the meantime.

Crazy idea? Maybe. As a side note, more blog space will be devoted to the fluorescent lighting issue in the future, on the advocacy side of things. Stay tuned for updates.

coming out of the (migraine) closet: a borrowed subject

Fellow migraineur and blogger, Megan Oltman, wrote an excellent post yesterday (as always) about coming out of the migraine closet. She makes the analogy of living publicly with this disease, of coming out with it like coming out with sexual orientation, and the need for education as a path to acceptance. She's right - the only way we migraineurs will ever get the compassion we deserve is through understanding, which will only come after education. And it's up to us.

Megan is doing an outstanding job, I think, of living out in the open with migraine disease. She doesn't hide her migraines, doesn't apologize for them, and does her best to ask for reasonable accommodations as she needs them. She educates those around her without preaching. I'm sure like the rest of us she still encounters those who just don't "get it", but that's to be expected. I give her a lot of credit for living her disease so publicly, because I'm not there yet.

I'm still in the migraine closet, so to speak.

For the most part, I don't discuss my disease. My boss and team at work know that I get migraines, but that's about the extent of it. I did print out some information about migraines from MMC and AHDA - including "What is a Migraine?", Understanding Migraineurs letter and the AHDA flier - to pin up outside my cubicle. Within the same week, I faced some incredibly insensitive comments from one of my coworkers, whom I promptly named "Mr Insensitive".

In college, I lost a lot of friends because of my migraines. At that time, I didn't even understand what I was going through, so I couldn't educate them. I thought I was just having sinus headaches. Along with the migraines came a bout with depression, and the friends I had were unwilling/unable to be a good support system at the time. Fair weather friends indeed.

I don't mean to make this into a sob story, but being burned in the past has made it difficult for me to be upfront with others in my life about the severity of my migraines, and I know I'm not alone in this. It's a subject we discuss every day on the MMC boards. Who do we tell? How do we tell them? How do we deal with those in our lives who don't get it? There is no one size fits all answer, that's for sure.

I've been working to educate those in my life who are close to me. DBF is reading Teri Robert's excellent book, Living Well With Migraine Disease and Headaches. I feed tidbits of information and articles to my mom. I sent the link to this blog to my sister. (Both my mom and sister, like most of the women on my mother's side of the family, are migraineurs.) Cliche though it may be, knowledge is indeed power.

So I may not be living openly and comfortably with my disease, but I'm getting there. One foot is poking out of the closet, at least.

-MJ

Thanks to Megs for a great topic!