fluctuat nec mergitur*

* "She tosses on the waves but does not sink".


I remember when I spent a semester living in Paris during college, I frequently took comfort in this phrase, the motto of the city of Paris. I had a lot of trouble there with culture shock and the language barrier, even though I spoke quite a bit of French when I went. Now that I'm struggling, again, in troubled waters - this time because of chronic illness - I find myself coming back to this phrase.

November proved to be one of the hardest months of the year. The first three weeks I felt tossed around by the weather coming through, wave after wave of storms. We set all sorts of records for rainfall, and not surprisingly, the November storms brought huge wind and dramatic pressure changes. A perfect storm for Migraine misery. I spent three weeks doing nothing but my part-time job (a paltry 18 hours a week) and laying on the couch, and remembered how awful it is to be so sick.

The third week of storms, I decided to increase the dosage of acetazolamide, as Dr E had advised I could do. I lasted four days at that dose. It's hard to tell, but I want to say it made my head pain worse. I say it's hard to tell because I was already feeling so bad that it was difficult to tell what pain came from which trigger.

And when things began to look up, when the storms calmed and I stopped the higher dose of acetazolamide, when my mom came into town for Thanksgiving, I was tossed by yet another wave. My boss called me the Sunday night before Thanksgiving to let me know he was laying me off, because he just couldn't afford to keep paying me anymore. And to add insult to injury, the unemployment office is "reviewing my claim" and hasn't paid me in over a month.

The past few years have been an exercise in treading water and just trying not to drown in the stormy waves of chronic illness, constant pain, debilitating Migraine symptoms, adverse effects, depression, anxiety, unemployment, financial strain, frustration, stress. While my pain levels have undoubtedly improved over the past year, my emotional state has gotten worse.

I'm ready for this bad cycle to end. I'm ready for some good news. I'm ready for some smooth sailing. But I clearly don't get a choice in the matter. Chronic illness (and unemployment) is all too good at reminding us how little in life we can actually control; I'm left trying to weather this storm, trusting that I won't sink.


Be well,
MJ

Image courtesy of Wikipedia.

radio silence | part 1: another acronym, another diagnosis

Well, hello there, everyone. I'm hoping to get back into more regular updates, and in the meantime, I hope to catch you up a bit on what's been happening in my corner of the world.

When I saw Dr E in February, he prescribed a low dose of Celexa (citalopram) to help with the anxiety and depression I was dealing with because of life stressors (namely, unemployment) and my health. Celexa is also used as a Migraine preventive, so we were hoping it would help in the head pain arena, as well. I spent a few weeks trying to gather my courage enough to swallow that first pill, and in the meantime, found a part-time job, so I never did try it.

During my follow-up visit with Dr E in April, he asked me where I wanted to go with my treatment. I had seen some success with Dr P, and obviously I was feeling skittish about trying new prescription drugs. So I brought up an issue that had been simmering in the back of my mind for over a year - are my vague symptoms actually due to Idiopathic Intracranial Hypertension? I certainly have at least mild head pain every day, with dizziness; as well as unexplained Migraine attacks, nausea, shoulder and neck pain, and tinnitus. Dr E and I had discussed this when I first saw him in 2008, and we had decided to try a few other treatment ideas first before further exploring IIH.

When I brought up IIH again, Dr E agreed that we had come to a point in my treatment where it made sense to test for it. He scheduled me for a lumbar puncture at the end of April. The procedure itself was fairly straightforward (though massively anxiety-producing) and I found out that my pressure is higher than normal. I ended up with a truly terrible spinal headache after the LP that left me completely bed-bound for a week, but I was able to get a blood patch to treat the headache.

While I'm certainly not happy to have another thing wrong with me, getting diagnosed with IIH has opened up my treatment options. Dr E prescribed me a very low dose of Diamox (acetazolamide) to reduce my spinal fluid pressure. I've been taking it since May, and just increased my dose a month ago, and I'm already seeing some positive effects. I'm tolerating it better than the other prescription preventives I've tried, so all in all, the LP was worth it.

I still have a long way to go in finding an effective treatment regimen, but adding the Diamox to treat my IIH has been an important step. I'm having less overall head pain, fewer Migraines and less severe Migraines. Every little bit helps, so I'm glad I followed my instincts and discussed IIH with Dr E.

More to come...


Be well,
MJ