As many of you know, I have fibromyalgia. Many doctors consider fibro to be an auto-immune disorder: basically, my body attacks itself. As many of you also know, I have the immune system of a bottle of glue. I seem to have very little resistance to infection, and since I was diagnosed with asthma, I’ve had more problems, especially as far as respiratory issues go. Many of you also know that I have chronic sinusitis and that, from time to time, it flares up into an actual full-blown sinus infection.
In December I came down with bronchitis; in January I had the flu. Now in February I have a very nasty sinus infection that is causing me a lot of problems. I am penicillin-allergic, so there are a limited number of meds I can be on when I get sick. This time I’m on Cipro, but it doesn’t seem to be doing as much for me as it could. I have had a headache for the last three days which I can do very little for; until last night, I couldn’t stand up for more than five minutes at a time without being violently sick. Apparently I have a lot of fluid in my ears because I’m having vertigo. I periodically have really bad nausea (like this morning). I keep wearing out insanely easy. I’m exhausted all the time. And I’m just not getting well fast enough this time around.
So, what does all this mean? Well, between talking with my doctor, my parents, and the Captain, we’ve decided it means that I am not taking care of myself as well as we thought, and that we’re not managing the fibro as well as we thought. Consequently, there are greater ramifications for activities than we originally thought: travel is harder on me than previously thought; I need greater time to recuperate from late-night activities; my recovery time after illnesses is longer than previously thought; when I am sick, the effects of fibro are twice as bad; and I simply can’t do as much as we thought I could do in general.
What I am asking is that y’all be patient with me. I am going to have to say “no” to activities more than I want to; I am not going to be able to plan parties and get-togethers like I used to. I am not going to be able to go out as much as I would like, or hang out with peeps as much as I would like. I am not going to be able to travel as often as I want. I can’t do these things because the repercussions are getting worse and worse. Every time I get sick, my symptoms are more exaggerated and it takes longer to recuperate.
It’s not that I don’t want to see you guys; I do. I miss you guys a lot. I miss seeing my family and friends. I miss spending time with you guys and having fun. But I just don’t have it in me like I used to, to do things the way I used to. I don’t have the tokens, I don’t have the strength, and I don’t have the wherewithal to explain this whenever I have to say no; it makes me sad that it’s come to this. But this body, this one body I have, as Sally Field says on the Boniva commercial, doesn’t work right, and I have to care for it the best way I know how.
Does this mean don’t invite me to things? No. Does this mean I’ll say no to every invitation I receive? No. Does this mean I’ll never throw another party? No. Does this mean I’ll never travel again? No. It just means I have to be *very* careful, and I’m asking for you guys to understand and be patient with me. Please keep inviting me to stuff, so I at least *feel* normal. Please trust that, from time to time, I’ll plan stuff – I just have to be very careful. And remember, I am always with you guys in spirit. And I want to be there for my family and my friends – but in order to do that, I have to be very restrictive and careful. And I am sorry.
If you can’t cope with this fact, now is your chance to walk away. I bear no ill will, honestly – I know this situation can be hard to understand and more difficult to deal with. If you can’t deal with it, here’s your easy out. But if you can cope, and you do want to stick around, well – thanks. It means more than you know. *hugs*
2.15.2008
2.06.2008
Behind the gates and the granite...
...of the Planet of New Orleans...New Orleans...with other life upon it...and everything that's shaking in between...if you should ever land upon it...you better know what's on it...on the Planet of New Orleans...
God knows, I am intimately acquainted with the Planet of New Orleans, its ragged sidewalks and shiny gutters, the gnarled trees and priceless courtyards. I am a child of the sacred city, pure and simple - it don't really matter that I was born and raised in Jackson, it really don't. Within a year of my birth, my parents were already taking me down there. This year I attended my 27th Mardi Gras (for those of you keepin' score, I'll be 29 this month). I tell people I was raised between Jackson and New Orleans, that's how much I love New Orleans.
Those who know me best know that New Orleans is Home; no matter where I live, where I go, New Orleans is Home. I spent a month in Russia in 1996 - the farthest I'd ever been from home and Home; the distance meant nothing. I still craved NO with a ferocity that denies explanation. Her destruction at the hands of Katrina and the levee breaks was my own destruction; I cried for days and days after it happened, as much for the city herself as for her people.
Lawks, I'll be 29 this month, and over the years, things about me have changed, no doubt. The lovable parts haven't changed (otherwise, I wouldn't still be friends with peeps I've known for years), but other things have. One of the things that hasn't changed and never will change is the love I have for the Crescent City. That is my goal, my Grail, and the prize on which I keep my eyes: moving there, making my life there.
I just spent 5 glorious days in the Big Easy, for Mardi Gras. We attended many parades: Endymion (still sacred to me); Thoth (new to me) and Bacchus (best damn parade I've EVER attended); and Proteus (saddest parade I've ever attended, and I went down to Mardi Gras following Katrina). I didn't make it to Morpheus (to which I've never been) or Orpheus (still sacred to me), but I had a blast every which way, so I ain't complaining. If there's a complaint to be made, it's that I had to come back here and start living this life again, rather than that life down there. That life down there: that's the life I ought to be living, and I know it. The Captain knows it. Those who know me best know it. We all know it - but it can only happen like this, for now, in small bursts, when no one can make a demand on my time.
I am surprisingly buoyant this morning, and I didn't expect that: I expected to wake up feeling depressed and deprived, but no dice. I feel all the generosity and freedom, all the contentment and honesty that NO engenders in me. I still feel it. Maybe it's because I left the city under my own speed, by my own will, with an understanding that I never really leave her. I saw that skyline once more before I left. I did not look back to see it, and so perhaps it wasn't like leaving, and that made it seem easier.
Whatever else might be said of me, you can say I have never hidden my love of the Captain, and I have never hidden my love of the City Beneath the Sea. My loyalties are few, to be sure, but they are fierce, and this morning, that ferocity, those loves, they keep me up and going. And I am grateful for all the love and strength they give me. If you have never known the love of a city, I am sorry for you, for you have missed something sacred and singular in life.
God knows, I am intimately acquainted with the Planet of New Orleans, its ragged sidewalks and shiny gutters, the gnarled trees and priceless courtyards. I am a child of the sacred city, pure and simple - it don't really matter that I was born and raised in Jackson, it really don't. Within a year of my birth, my parents were already taking me down there. This year I attended my 27th Mardi Gras (for those of you keepin' score, I'll be 29 this month). I tell people I was raised between Jackson and New Orleans, that's how much I love New Orleans.
Those who know me best know that New Orleans is Home; no matter where I live, where I go, New Orleans is Home. I spent a month in Russia in 1996 - the farthest I'd ever been from home and Home; the distance meant nothing. I still craved NO with a ferocity that denies explanation. Her destruction at the hands of Katrina and the levee breaks was my own destruction; I cried for days and days after it happened, as much for the city herself as for her people.
Lawks, I'll be 29 this month, and over the years, things about me have changed, no doubt. The lovable parts haven't changed (otherwise, I wouldn't still be friends with peeps I've known for years), but other things have. One of the things that hasn't changed and never will change is the love I have for the Crescent City. That is my goal, my Grail, and the prize on which I keep my eyes: moving there, making my life there.
I just spent 5 glorious days in the Big Easy, for Mardi Gras. We attended many parades: Endymion (still sacred to me); Thoth (new to me) and Bacchus (best damn parade I've EVER attended); and Proteus (saddest parade I've ever attended, and I went down to Mardi Gras following Katrina). I didn't make it to Morpheus (to which I've never been) or Orpheus (still sacred to me), but I had a blast every which way, so I ain't complaining. If there's a complaint to be made, it's that I had to come back here and start living this life again, rather than that life down there. That life down there: that's the life I ought to be living, and I know it. The Captain knows it. Those who know me best know it. We all know it - but it can only happen like this, for now, in small bursts, when no one can make a demand on my time.
I am surprisingly buoyant this morning, and I didn't expect that: I expected to wake up feeling depressed and deprived, but no dice. I feel all the generosity and freedom, all the contentment and honesty that NO engenders in me. I still feel it. Maybe it's because I left the city under my own speed, by my own will, with an understanding that I never really leave her. I saw that skyline once more before I left. I did not look back to see it, and so perhaps it wasn't like leaving, and that made it seem easier.
Whatever else might be said of me, you can say I have never hidden my love of the Captain, and I have never hidden my love of the City Beneath the Sea. My loyalties are few, to be sure, but they are fierce, and this morning, that ferocity, those loves, they keep me up and going. And I am grateful for all the love and strength they give me. If you have never known the love of a city, I am sorry for you, for you have missed something sacred and singular in life.
Subscribe to:
Posts (Atom)