Friday, June 4, 2010


I had a family party last week. It was the usual: throngs of people yelling at each other over the din of hip-hop via concert-sized subwoofers and a drum kit in the middle of it all with a three-year-old jamming his heart out. Okay, no, there were only about 15 of us and the speakers were the normal kind and the drum kit was upstairs, but still.

I survived. With the help of full-sized earplugs, my new hat, and some strategically administered drugs, I even enjoyed myself. I stayed long enough to have a little fun, socialize, eat, and relax, but left early enough so I missed the real shenanigans entirely. I consider the occasion a success.

My only frustration I felt that day was for how the conversation was constantly brought back to my headaches. I understand my family's curiosity, but I don't want to discuss it, for so many reasons. I have no news. Every day is the same for me. I have no current hope for relief and my focus is on improving my quality of life. I don't enjoy looking at sad faces and being pitied makes me nauseous, so I answered a few questions from everyone who asked, then politely and with a smile insisted that I didn't want to talk about it anymore. They took it well (mostly), but I feel guilty. I worry that I am shutting people out. But I don't have energy for everyone anymore. I barely have energy for me.

But I have pain all the time. If I am only going to be out of the house and with family for three hours, I don't want to spend two of those talking about pain. I'm trying to have a good time! I just want to forget how messed up my body is and smile and love on my aunt's new hairstyle and joke with my grandparents about facebook and laugh at the pool horseplay and enjoy watching my uncle scramble to keep up with the three year old.

I'm composing an email. Explaining to them what's going on, and why I don't talk about it. I don't know yet if I'll send it. Maybe.


I had an appointment this week with the new internist. I was nervous again, but I just kept breathing and only made one weird, awkward joke. She suggested an anti-depressant, which I relented to try. I was hesitant because I have had bad experiences in the past, like that one time I went emotionally numb for a year. But I wasn't getting adequate health care then, and didn't have a partner to help me self evaluate. Actually, when the doctor asked me how I've been feeling, my first instinct was to sugar coat it. Then I glanced at my boyfriend, who was raising his eyebrows at me in that if you don't tell her I will way and I told the truth. So, I've got a prescription for Cymbalta and instructions to taper as slowly as I feel necessary. We'll see how it goes. She also filled me up on my usuals, and referred me to a couple psychologists, a headache specialist, and an internist who does acupuncture and has knowledge in chinese medicine. We went over the few records she's received so far and she is going to order a new blood panel and some kind of screening where they check for heavy metals and things of that nature. I was starting to fade at this point, so it all gets a little hazy. She gave me a sample and prescription for Sumavel, and said that with my fairly constantly waxing and waning migraines that I should take it when the pain gets worse than normal.

This was a little thing, but this is the first time a doctor has given me a prescription abortive and given me instructions that apply to me. Usually they tell me to take it when the migraine starts (but there isn't usually a clear beginning or end), or when I first start to experience an aura (but my auras come before, during, after and without migraines so that's a totally unreliable gauge, too). Then the doctor usually gets irritated, like I'm making it difficult on purpose and tells me to take it as soon as I can, but not too late, or something similarly vague and I leave confused and frustrated because I have no idea when to take this drug. I mean, my head hurts. Should I take it now? Or is it too late already? I've been nauseous for the last hour, and have had peripheral sparklies all day. When should I have taken it? NO IDEA.

"When the pain gets worse than normal". So simple. I love that I'm not developing a complex trying to figure out what it means. I love this doctor.


I emailed Hulu because many of their shows and movies are not captioned and they emailed me back the next day. They sent me a very nice note regretting that I'm not able to watch some programs with captions and assuring me that they will forward on the request to the content owner. If I have any further caption requests, I can leave them on a discussion board and they may not always respond, but they always read and make note of them. This was a positive response, and I appreciate it. Thanks Hulu, now I almost forgive you for the fear-mongering cervical cancer commercials!


Migrainista said...

I'm so glad you found a good's so important when you have a complicated medical issues.

Good for you for getting out and having some fun!!!

Myth said...

I get what you mean about discussing your health with your family. It comes up from time to time in conversation and I always want to say something vague and hopeful sounding, because honesty is sometimes too brutal for my own ears... and really a mood killer.

I also understand your reluctance with anti-depressants... I have the very same, and for the same reasons. They tend to make me utterly numb, and I don't always clue in, even while my life unravels before my eyes. I rather don't like that side effect. Conversely, I have tried some that make my mood swings so erratic they frighten even me. I am also on Cymbalta, as a migraine preventative and hopefully will also help with my fibro. My neuro likely thinks I am a wee bit stressed from work, frazzled and emotionally fragile but he would not consider medication for that, given it is pain induced emotional issues, not neurological emotional issues. Cymbalta is not that bas as far as I can tell, no real side effects for me, plus it does help with nerve pain... not doing anything for the migraines, but then I'll take what I can get and call myself lucky.

Heather said...

Be careful with Cymbalta. Unlike Myth, I had insane side effects. I took one pill and went lethargic and felt like I was in a whole other world. I missed work that day and I don't remember anything that happened the entire day other than sitting on the couch feeling weird. My therapist says I should try it again because it's good for pain, but I refuse. My dad had the same side effect when he tried Cymbalta. You may find that it's fine for you; everyone's different but I thought I'd share my experience.

I can completely relate to your experience with family. My mom's a nurse and my dad has fibro, so I'm lucky they understand where I'm coming from, but usually the first question my mom asks when she calls me is if I'm having a headache or how my headaches have been (she can always tell by my voice which is amazing to me - I wish my husband was that perceptive haha). It's hard saying yes and my headaches have been terrible and the latest new thing I'm trying hasn't helped a bit. I'm scared I'm going to sound negative all the time to my family and especially friends, who don't have that level of understanding. Props to you on saying you don't want to talk about it anymore. I should start doing that instead of going in circles every conversation!