The Atrophy of The Wolf

Life with Lupus and a constant source of understanding for those who "get it" and those who just don't.

[warriorofthewolf]

at lot of you wont like this.

A lot of you wont like this post because you will probably think I am insensitive. I am not insensitive. Before reading please bear in mind I have the utmost sympathy for every ailment, trouble, and malaise in the world. No, I haven't been fighting a lifelong battle with cancer. Or even a slightly hard battle with cancer. I have been fighting a an absolutely grueling battle with my own immune system. Sjorgens, SLE, Rheumatoid, Ankylosing Spondylitis, Lichen Sclerosus, Raynauds Phenomenon, Vertigo, Hyperthyroidism, Adrenal Fatigue........I'll stop there for now. Its kicked my butt more times than Id like to admit. Surprise surprise but I take almost all the same medications as cancer patients. I have all the same problems. Hair loss, fatigue, vomiting, nausea, a general feeling like I cant do anything. I can die and if my c-reactive protein, ANA, and anti-nuclear DNA don't get under control, then no, I wont live till i'm 85. Id also like to point out, for the past 6 years I have been unresponsive to treatment. Only slightly responsive. Nothing good enough to keep things under. I dont have an immediate looming date or percentage for survival looming over my head. At 15 I had to accept the fact I would suffer in pain everyday for the rest of my life, with no choice. I would have to treat the illness(s), if I wanted to live normally and not be crying in pain. But it wasn't and isn't going to kill me right off. Treatment or not, Ill still be in agony for at least the next 10 years before I can think about whether or not I should stop treatment and let myself go peacefully. I, as a patient of autoimmune disorders, would not like to die, would not like to have cancer and can't even imagine the pain of suffering from those or having a death sentence looming above. I, as a patient of autoimmune disorders, do see the peace in death. The peace that comes with being able to choose. I, as a patient of autoimmune disorders, do suffer daily. More than you can imagine. I, have learned to hold myself so that people mostly can't tell. Because I have no choice. I am desperately in need of funding for research, medication, and general global awareness. Autoimmune disorders kill, they just don't make the front page because its a slow process. So, Im sorry. Cancer sucks. But who is to say that Lupus doesn't deserve equal attention.

[warriorofthewolf]

Explanation

Wolf in latin is Lupus. Lupus, like the degenerative, chronic and often quite aggressive disease. So when I refer to being a wolf warrior, or the atrophy like this blog suggests I am referring to disease. My name is Pepper. Im 21, and I presently have 16 concrete and verified diagnoses that make every day not a struggle, but a battle. The way I see it, my body is at war and I am my own worst enemy. The only way to win is through psychological strength, determination, and the heart of a warrior. Yes I have Lupus, Systemic Lupus Erythematosus. I also suffer from severe active Rheumatoid Arthritis, and Ankylosing Spondylitis. I have an autoimmune skin condition known as Lichen Sclerosus, and several other comorbidities (i.e. stuff i got as a result or on the side that i didnt ask for). My tag - along illnesses as I so call them include most annoyingly, Sjorgens Syndrome and Raynauds Phenomenon. If you think that all that was a bunch of gibberish, or you didnt understand any of those fancy words written above then I suggest you try the power of google. Im not going to "here let me google that for you", but It would seriously take me a very long time to write it all out. So go forth, and google away. Not yahoo. No one says "lets yahoo something". Google. Get your research done, come back and then we will get started. (intermission) SO homework being done you now understand that my body attacks itself, and is a big ball of inflammation just plodding along. You've got the background info. Man doesn't some of it seem so optimistic? My favourite part is "most patients with Lupus can lead active lifestyles". To be clear, I'm not sure what the definition of "active lifestyle" is, but Im fairly sure were not meeting in the middle on that one. So whats worse? EH its all balled into one. Like one big superbug. Everything is connected and the minute you think otherwise, you loose half the battle. Every single condition I have works by a process of "flares". If one thing, gets set off, generally the rest follow suit. Flares are when life just sucks. Imagine carrying around a giant load of luggage or parcels. They're all strapped to you, and for days you just plod along despite the discomfort. A flare is when those parcels, or that luggage, starts to fall on top of you, grow arms and legs, and show you how much of a discomfort it really can be. You cant get away with it just being one, they are like a gang. I guess the point of this exercise isn't to whinge about my sad miserable life. I don't have a sad miserable life. I'm actually wonder woman, i'm sure of it. However, I have aims for this blog. a) to share my experiences to broaden the average persons understanding of life with autoimmunity, b) to have a bit of a whinge while leaving my true identity out of the picture, c) because people need perspective. More than anything, no matter what battle or war we are a part of, we need perspective, and positivity. You'll quickly see why I am wonder woman, and you'll (hopefully) be amazed at what I can do with a little willpower. So welcome. Get off WebMD and lets be realistic about this junk my body has got going on. Blessings of good health, Pepper x