Archive for September 19th, 2010

Die In A Fire, Lupus!

September 19th, 2010

I think I should start this blog with a disclaimer. Any angry remarks directed towards people is not directed towards anyone in particular. I’m just angry at the moment. I’m in a lot of pain and am just overall “stabby”. It is quite difficult to remain my normally rational self when my body is saying, “Oh. You want to be productive today? HA HA! I’m gonna fuck up your vision, put sores in your mouth so that eating is painful, boil your blood and cause you to pass out for 4 hours thus messing up your sleep schedule more than I have already and there is isn’t a bloody thing you can do about it. You’re MY bitch today!”

I am so angry right now. I haven’t been angry with my disease in a very long time. I’m at the point where I’ve lost all compassion and sympathy for others. Any time I hear someone complain about anything, I want to scream, “I’m fucking dying but you don’t hear me pissing and moaning that I had to crawl to the bathroom today, do you?!? I had a stroke when I was 30. 30! I had to relearn how to walk, talk, dress, feed myself and a bunch of other things. I had to have people wipe my ass and my own children feed me dinner! And you’re complaining about what exactly? Suck it up buttercup and get on with your life! Oh… you want me to understand what it is you are going through? Please tell me then, have you made any attempt to understand Lupus and what it is that *I* am going through? No? Then shut your hole!” But then my brain tell me, “We are all dying, sweetheart. Some of us just quicker than others.”

I am at the point where anybody wishes me well, I want to say, “Take your fucking unicorns and rainbows and bugger yourself with them! Your well wishes do not cook dinner for my children when my body has decided to knock me out for hours, when the intent was just to lie down to relieve pain in my back! Your well wished do not wash the dishes in my kitchen sink! Your well wishes do not remove all of my hair that is falling out, currently clogging my pipes, out of the bathtub drain! Your well wishes do not provide me a car or transportation to get my grocery shopping done! Your well wishes do not provide me a car or transportation to the doctor’s office so that I can get weekly injections in my ass checks and joints! All your well wishes are doing is reminding me of the fact I do not have the bloody physical supports I need right now in order to get better!”

Fuck, I am such a hag! I told you I was stabby. Because really, if I were not this ill, I would appreciate it. But truth be told, I haven’t been this ill since right before my stroke 4 years ago. And before that, when my road to diagnosis had begun and I had to stop dancing because I could no longer move any joint in my body without it feeling as if knives were being twisted and turned inside of them.

People keep telling me to take it easy and rest. It seems all I do is take it easy and rest. Yes, I keep myself busy with my websites and contributing to a few others but lately, a good part of my day is spent lying down in between times that posts are scheduled. I’m not doing a lot. I actually feel quite useless and as if I were a lame horse that should just be shot and turned into glue. I don’t like feeling this way. What I don’t like even more, is the tongue lashing my brain gives me when I feel this way. The venom above directed towards nobody in particular, I also direct at myself. I tell myself to quit feeling sorry for myself and just get the fuck on with my life because I am not a bloody victim. I’m a survivor damn it! But I am human. I would be more worried if I did not get angry from time to time.

And then I read something from one of my fellow chronic illness sufferers filled with rainbows and unicorns and “positive thinking will get you blah blah blah blah” SHUT UP! Just shut the hell up with the positive thinking stuff! I bloody well know this. Have you not read or listened to me talk. I know how to survive my disease, both mentally and physically. I get that you are trying to help but SHUT UP! Your rainbows and unicorns are invalidating my feelings. These are MY FEELINGS! Let me bloody well have them! They will pass and I will go back to being Data or Spock. Trust me on this! I’m already giving myself a hard enough time and telling myself to cram my anger up my bunghole! I don’t need you to tell me the same thing but disguise it with passive aggressive unicorn and rainbows!

Yeah, I’m angry. Irrationally, I feel as if I am failing my children, myself and my friends. I cannot be the things I think and feel I should or need to be and I have no control over it. I’ve been having to decide if I’m going to up my normal meds from 7 to 9. The extra 2 will just be temporary. But I am having to weigh “is the cure worse than the disease”. Because these two treatments require me to go to the doctor, once a week, for painful injections. These injections consists of gold salts in my ass cheeks. This bloody hurts! Because of the solution it is in, if you do not completely relax the injection site, the muscle spasms are ferocious. Once, I was afraid the needle was going to snap off because of it. And the spasms continue for hours after ward. And the other is cortisone injections into my joints. Let the 2 inch needle jabbing and digging in between the joints begin! JOY!

So aside from the pain to heap on top of the pain I’m currently experiencing, there would be added fatigue. I don’t have a car and I have no physical supports. I have to rely on public transport. And of course, it doesn’t do a straight line from my house to the doctors office. So what would be a 20 minute round trip (including doctors appointment) if I did have a vehicle, turns into a 20 minute walk (round trip) + 1 hour bus ride (round trip) + 10 minute doctor appointment + time waiting for bus to return home. These trips would require me 2 days to recover from and leave me in a lot of pain. So how am I going to cook dinner, clean and take care of two children? Do I continue with the heavy meds I am already on and hope they get the disease back under control or do I do the extra measures which will make things worse but could bring the disease back under control quicker however, they are not guaranteed to work?

I am angry. I woke up this morning feeling shitty. But as I blogged earlier, at least I had laughter. Well that was before I decided to take advantage of kid2 playing outside and lie down to relieve pain. I ended up passing out. He burst into the house as he always does, exclaiming, “Bonjour, mon ami!” I yelled, “I’m sleeping! How many times do I have to ask you to check if I am resting or not before you start yelling and wake me up!”, causing me to feel like a complete jerk! But I was so exhausted, instead of apologizing like I wanted to for being a sodding mean monster of a mother, I immediately passed back out. I awoke 4 hours later to discover it was 10 pm and the kid asleep. I hope he got himself something to eat. I feel like the worst mother on the face of the planet at this moment. I’m terrible.

I am angry. I have good reason to be angry. But why am I sitting here in tears calling myself an idiot if this is true? Why do I feel as if I have let down not only myself, but everyone around me and most importantly, my children.

I am angry. I AM ANGRY!

DIE IN A BLOODY FIRE, LUPUS!