Excuse Me? I Can’t Eat WHAT???

Most of the time, I understand that I am profoundly blessed and I can hold this perspective in mind. Then, there are days like today when it takes substantial effort to keep this fact at the forefront of my cinnamon rolls (also known as brains).

Lupus is the kind of medical condition that can be completely debilitating. Many lupus patients are forced to quit their jobs and go on disability. I am very, very grateful that I have not been compelled to take this course of action in order to manage my disease. And lately, my pain level has decreased dramatically, which has been a phenomenal turn of events. However, I learned the hard way that simply because my pain and fatigue are being managed pretty effectively, inflammation has not stopped raging inside my body.

A few weeks back, I essentially forgot to take my meds for 48 hours. And boy, did my body let me know what a mistake that was. In addition to horrible aching, tingling and shooting pains in various parts of my body, it felt like someone had gone at several of my long bones with a baseball bat. After resuming my medication schedule, I called my rheumatologist, who ordered blood.

It seems that while my pain meds are working quite well, my immunosuppressant medication is no longer controlling my inflammation very well at all. After more blood work comes back, my rheumatologist will be determining what new, even stronger meds we should try… because 2.5 years’ worth of steroids and immunosuppressant meds have yet to work over a sustained period of time.

This is the kind of development that makes me so frustrated that I have to check myself in order to make sure that I do not go banana muffins. If the inflammation in my body is not brought down to healthy levels, then the pain medications I’m on are simply masking the extremely serious underlying problem.

So, I have spent much time this past week on the phone with doctors, in doctors’ offices, on the phone with nurses and generally seeking counsel from a variety of medical sources. And this is what I have determined: In order to better bring my inflammation under control, I need to turn up the volume on everything I am already doing. Stress reduction, mediation, stretching, acupuncture, etc. (The list is very, very long). In addition, I am supposed to try and cut the following things from my already whole-foods, vegan, non-spicy, non-fatty, non-salty, non-sugary (three of these last four qualifications are for other medical issues) diet:
- Gluten
- Grains (yes, you heard me right. All freaking grains)
- All corn and soy
- Legumes
- Nighshades (including eggplant, white potatoes and tomatoes)

And this, my dear friends, is why I’m trying to focus on gratitude. After you’re done reading this post, go to your kitchen or look on some menus and find everything that is vegan (no meat, fish, dairy), unprocessed (no packaged foods) and is not spicy, fatty, salty, has no sugar (unless it is a fruit), is gluten-free, grain-free, soy-free, corn-free and has no potatoes, tomatoes, eggplant or legumes (beans, peas, peanuts, peanut products, carob, lentils, etc.)

And, while you are engaging in this exercise, keep in mind that my disease is chronic, so I’m never ever going to be able to change eating like this.

Gah. Even writing this post is pissing me off right now. BLAH.

Sigh. It is important to honor and acknowledge the things that challenge us. And yet, I know that it is never long before I remember that I am extremely blessed and that the best thing I can do is battle this condition with all I can give and to keep it in perspective.

The Necessity of Theme Music

Many of my friends and loved ones in the healthcare profession have confessed to me that they cannot enjoy medical dramas. Similarly, I have found that I cannot enjoy legal dramas. As an attorney, I am frequently distracted and frustrated by the inconsistencies and missteps that the writers and producers of these shows often seem to care little about. Once, when I was watching a movie with a court scene in it with (then) nine-year-old Samantha, she hollered at the television, “You can’t do that!” “He can’t do what, babe?” I asked. “He can’t turn down a settlement offer without taking the offer to his client, right? You tell lawyers on tv that a lot.” I rest my case.

However, I have found that I cannot only watch but can actually enjoy legal shows that are ludicrous in nature. As long as the show exists in some sort of half-reality and is comedic in nature, I can gobble legal storylines up with a spoon. This is why I am a fan of shows like, “Drop Dead Diva” and “Ally McBeal.”

While “Drop Dead Diva” is more of a “guilty pleasure” (I take issue with that phrase, but that is a topic for another post), I actually think that “Ally McBeal” is surprisingly brilliant. The vulnerabilities and inner struggles of many of the show’s main characters often manifest themselves in larger-than-life ways. And while I am normally not a fan of magical realism (do not get me started) except when this tool is used exceptionally well, I believe that the show’s investment in magical realism is not just part of its charm, it often serves as an extraordinary manifestation of heart.

However, one of my favorite emotional tools that some of the characters on this show utilize is not magical at all. It is straightforward and can be used by any one of us during moments when we need a boost, when we want to celebrate and when we need to focus our energy in order to achieve an aim. This tool is theme music.

When Ally goes to see her nutty therapist about an inner struggle, the therapist insists that Ally needs to get herself a theme song. Ultimately Ally chooses “Tell Him” by Linda Ronstadt. When she needs courage, when she triumphs and when she needs to pump herself up, she begins playing that song in her head. Almost always invigorated as a result, she move forward onto whatever she needs to do next with more focus, vibrancy and life than she previously possessed.

Over the past few weeks, as I have begun to adjust to the ups and downs of feeling much better on medication but remain ultimately limited in a host of ways, I have called upon theme music and it has been surprisingly effective. At the moment, I have two songs that I am calling upon. When I am home alone and can dance out an entire song, I use “Shake it Out” by Florence + The Machine. When I have company or am out and about, all I have to do is start hearing the opening beats to “Jump” by Madonna and I instantly have more energy, purpose and strength.

If you have never had a theme song, consider trying one out. It may seem silly at first, and you may have to play your song multiple times before you can call upon it at will. However, it just might inspire you to remember all the strength, energy and life that is already within you.

Pain-Free and a Total Moron

My sincere apologies for my recent absence. I have been away on moron leave. Moron leave becomes necessary when doctors change your drugs up and said drugs turn you into a blubbering idiot. After my drugs were changed in December, I basically forgot an entire week. Thankfully, Mark assures me that though I didn’t “miss much” I was pretty fun to be around during my lost week. Given that I am a surprisingly fun while intoxicated, it shouldn’t surprise me that I am fun when I am a touch over-medicated.

Now that I am again intelligent enough to speak and write and remember what it is I have said, I need to share some incredible news. After 26 months of unrelenting pain and fatigue, endless rounds of steroids and other medications that have failed to work, my newest drug cocktail has made me virtually pain-free. That’s right folks, I said PAIN-FREE.

I should mention that my joints are really crabby when I try to run at this point. However, the rest of my body is only tired, not fighting pain. My bones don’t ache so badly that they wake me at night. When either I or others touch my skin, I no longer wince. My fingers do not throb throughout my workday. My feet can handle shoes with laces again. I take baths to relax, not to regain the feeling in my lower body. I have stopped losing entire days due to pain that is so bad that it makes me vomit.

And do you want to know what the most astonishing part of this entire transformation has been? While I am sitting in the car or knitting while watching television, my body starts to itch to get up and move. I am craving the experience of movement like others crave food. I want to write and move and socialize in organic ways I had forgotten completely. I have remembered all this time that I miss these things, but I had totally forgotten what it feels like to be truly energized and focused with such intentions. Above all, it seems that my pain has simply been a colossal distraction from the actions that once defined my experience and will hopefully define my experience again.

Now, it is important to understand that my pain-free state is likely not a permanent one. I cannot be on the drugs I’m on for more than a few months or I risk doing even more damage to some of my body’s systems than I already have. As a result, I plan to use my pain-free months as an opportunity to get as healthy as I possibly can so that when my doctors wean me off of them, my poor body doesn’t go as bananas as it otherwise would.

I am excited to share my journey with you as I pursue sincere health and wellbeing without being consistently distracted by physical pain. And I cannot tell you how grateful I am to have the opportunity to do so. Happy New Year, everyone.