I don't want this to be a "lupus" blog. I am MORE than this disease. But I haven't expressed myself in quite a long time because this disease has taken over my life. I resist it taking over my blog, as if that is my last stand of self in this world. HA! But I need someone to listen, someone to talk to, someone not to judge, or even offer comfort. Just to hear me, hear what I struggle with, hear what I am overcoming, hear what this is like for me. The messy, ugly, gory details. Ain't nobody got time for that! I get it, because it is not pretty, it is real though. What I am experiencing. And most of all...IT HURTS. At the same time, I am leery of bogging my loved ones that do know, and do care, down with the ugly, messy, gory details, but I have to say something/share something because I can't just keep it all inside.
My life has changed.
Completely.
Drastically.
And I want someone to know it. Someone ELSE to know all about it. Is that too much to ask?
I haven't cried yet. Aside from certain time of the month emotional cracks. My breakdown must be cathartic, yes, but it should be meaningful and I want to be smart about it too. Tears. What do they solve? But I probably need to. Writing is cathartic for me, but this time, I WANT an audience.
To realize that although I "look good" this disease is invisible. I haven't "felt good" in months. Constant fatigue. Constant exhaustion. Constant pain. Constant inflammation. Swollen joints. Sore muscles. Fever. Chills. Swollen lymph nodes. Weight loss. Constipation. Incontinence. Bloating. Gas. Burping. Belching. Headaches. Chest pains. Shortness of breath. Shallow breathing. Yawning. Cold fingers. Dry skin. Ezcema. Hair breakage. Insomnia. Foggy memory. Photosensitivity.
And I'm LUCKY. No kidney involvement. No heart involvement. No blood involvement. No brain or spine involvement. Lung involvement, yes. Breathing to live has never been more challenging...in my entire life. I am doing better than I have been in months, but I am coming to terms with the possibility that I will never feel great/perfect/wonderful again. I can get comfortable, though. That that may be it...disturbs me. I try to enjoy the upside -- I am down 30-some pounds (cross #3 off my 101 Things to Do List), and although my boobs are not quite as prominent, I can wear cuter clothes again. I've treated myself to a couple of new dresses, but I hesitate to purchase a new wardrobe because I fear that this disease and the meds may bring the weight back. For as MUCH as I love my bed, and my bedroom, I am spending inordinate amounts of time in it. I am learning the significance of thread counts and wicking fabrics and pillow types. The color scheme and lighting is serene and comforting. It's a sanctuary in ways I never anticipated. The sooner I can get the Queen's Quarters completed, the sooner I can have guests visit, in my sanctuary :)
The most rewarding upside is awareness. Making others aware of what lupus is and isn't. It is a mighty education effort, for many have never heard of it, those that have don't know what it entails, how it afflicts. It's a learning curve for everyone that I'm acquainted with. How do I respond to obvious questions like: "How'd you lose all that weight, girl?" or "You want to join me/go to ________?" or "How come I haven't heard from you, where have you been hiding?" Yes, the cliche' is true that "everything must change" and we aren't the same people we used to be, but I feels so literal and immediate in my case. I am physically unable to be like I was...before. Thus, it affects how I interact with everything and everybody. I am learning that and hoping my loved ones can accept that.
I am MORE than this diagnosis. My life has been turned upside down, yes...in GOOD ways over the last 6 some months and in the days to come, I'll have a bit more to say about alladat :)
..::More to Come::..
Song of the Day -- "At the Crib" -- Jairus Mozee
My life has changed.
Completely.
Drastically.
And I want someone to know it. Someone ELSE to know all about it. Is that too much to ask?
I haven't cried yet. Aside from certain time of the month emotional cracks. My breakdown must be cathartic, yes, but it should be meaningful and I want to be smart about it too. Tears. What do they solve? But I probably need to. Writing is cathartic for me, but this time, I WANT an audience.
To realize that although I "look good" this disease is invisible. I haven't "felt good" in months. Constant fatigue. Constant exhaustion. Constant pain. Constant inflammation. Swollen joints. Sore muscles. Fever. Chills. Swollen lymph nodes. Weight loss. Constipation. Incontinence. Bloating. Gas. Burping. Belching. Headaches. Chest pains. Shortness of breath. Shallow breathing. Yawning. Cold fingers. Dry skin. Ezcema. Hair breakage. Insomnia. Foggy memory. Photosensitivity.
Pleurisy. Costochondritis. Reynaud's. Anemia.
SLE
And I'm LUCKY. No kidney involvement. No heart involvement. No blood involvement. No brain or spine involvement. Lung involvement, yes. Breathing to live has never been more challenging...in my entire life. I am doing better than I have been in months, but I am coming to terms with the possibility that I will never feel great/perfect/wonderful again. I can get comfortable, though. That that may be it...disturbs me. I try to enjoy the upside -- I am down 30-some pounds (cross #3 off my 101 Things to Do List), and although my boobs are not quite as prominent, I can wear cuter clothes again. I've treated myself to a couple of new dresses, but I hesitate to purchase a new wardrobe because I fear that this disease and the meds may bring the weight back. For as MUCH as I love my bed, and my bedroom, I am spending inordinate amounts of time in it. I am learning the significance of thread counts and wicking fabrics and pillow types. The color scheme and lighting is serene and comforting. It's a sanctuary in ways I never anticipated. The sooner I can get the Queen's Quarters completed, the sooner I can have guests visit, in my sanctuary :)
The most rewarding upside is awareness. Making others aware of what lupus is and isn't. It is a mighty education effort, for many have never heard of it, those that have don't know what it entails, how it afflicts. It's a learning curve for everyone that I'm acquainted with. How do I respond to obvious questions like: "How'd you lose all that weight, girl?" or "You want to join me/go to ________?" or "How come I haven't heard from you, where have you been hiding?" Yes, the cliche' is true that "everything must change" and we aren't the same people we used to be, but I feels so literal and immediate in my case. I am physically unable to be like I was...before. Thus, it affects how I interact with everything and everybody. I am learning that and hoping my loved ones can accept that.
I am MORE than this diagnosis. My life has been turned upside down, yes...in GOOD ways over the last 6 some months and in the days to come, I'll have a bit more to say about alladat :)
..::More to Come::..
Song of the Day -- "At the Crib" -- Jairus Mozee
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