What sort of Roadsign would go with the above warning? Would it be one of those Yellow Triangle signs? How about the one with the cliff and a person flying off of it? Hmm, I should probably find one and then I can post an image of it at the top of entries like this, warning people away from what they don't want to read.
I've put this entry off for a couple of days because I keep hearing someone say "Are you going to post another whiny blog entry?" and then I shy away but ... I'm not going to. No one HAS to click on that link to come here. Besides, my husband gave out my blog address to a man he met whose girlfriend was just diagnosed with this horrific illness and I don't want to sugar coat my life because people can't handle clicking away frmo what they don't want to read.
Whew. Where do I begin? Perhaps you detect a note of hostility. Well, yea. I'm wound tight like a spring. Sometimes, I want to bitch/moan/groan about my life and the shit that is going on with it but it's very apparent that people don't want to hear it. When I've barely mentioned something, I can see people tune out. That's fine ... but then I am subjected to listening to those same people talk about something important to them and I am dialed in and a participating member of the conversation because I'm not rude.
I'm sick. No, I don't have something that's going to just disappear and be gone. No, I am not making this up for attention. I do so much to NOT get attention from it that I can't believe someone would think that's what is going on. I am NOT going to get better from this. I will get to a new kind of normal better, I'll be in remission, but I'll be afflicted with this for the rest of my life. It could flare up at any time. It could not flare up at all. But, that's when I do get to that blissful thing called remission. At the moment, I am SO not there yet. I've barely started taking the medication to make my immune system figure out it's attacking the wrong things. The medication makes me feel sick in of itself and will continue to do so until I get to the actual "treatment dose". I am taking baby steps to get to that point.
I get dizzy when I turn my head sometimes, I feel like I am in a fog. I have huge lesions inside my nose that scab over and HURT on top of the nose itself hurting from being inflamed, I can't rub my nose or I'll get a nose bleed, my face and sinuses hurt non-stop, my teeth hurt, my eyes are full of pressure and throb, my eyelid and eyebrow on the right side is now spasming all the time, I woke up this morning with both shoulders in agony, I went for a walk and then felt like I was going to collapse. I cough and cough and cough at times, one minute my nose is dry and the next it's running like a sieve. It feels like they have smashed my face with a sledgehammer, I have to watch my pee, I have to wipe everything down and use Purell like it's a lifesaver. I become so fatigued at times I have to walk myself through the most basic of task, like walking.
I am trying to do everything in my power to be like everyone else. I could very easily call in sick when I don't feel up to par. I have plenty of sick time and it would be perfectly acceptable to do so. Even if I had to provide a doctors note for every hour I called in sick ... I could. My doctor would document every time I needed to be out. She understands, she would applaud me for taking the time to rest. But, if I did that, I'd be gone a lot. I am trying to adjust to how this all feels. I am trying to get through this part which I hope will fade away to somewhat normalcy. I don't want to be a burden. I don't want to be talked about and whispered about. I don't want people to make up their own ideas about why I am out. After all, people don't believe me. "You don't look sick" ... well, you don't have to LOOK sick to be sick. Believe me, I wish outwardly would show how I feel on the inside because then I wouldn't have to feel like this. But, I am trying. I am trying so hard to not burden people with this.
I've found some Facebook pages, Twitter pages, support forums, all involving Vasculitis or Wegener's Granulomatosis. I've joined the Facebook groups, followed the people on Twitter who say they have it and joined the forums. I regularly post and comment with them because it's people who actually KNOW. Not that I am going to block out those around me, but there are some things I'll talk to the forum about that I won't bother other people with because they get it. I've vented about the "You Don't Look Sick" thing. Because, they truly understand. I've talked with those who, like me, gained weight from our lovely steroids so we don't have that weight-droppin-sickly person look. Trust me when I say I WISH I could have had that. I have an overactive thyroid that also thinks it's not producing enough so ... my metabolism doesn't even know what to think. My Endocrinologist (thyroid laduy) has NEVER seen test results like mine. Nice, huh?
Sometimes, I feel like I am waging this battle alone. I KNOW I'm not. But, at the same time ... I don't want to burden my friends/family with constantly talking about it. I find myself doing that because I have to pretend everything is fine 99% of the time that when I am talking with w friend/family member that wall comes down and I vent/whine. I am sorry, those of you who constantly have to hear about this. I am sorry I am always talking about it. I promise to not always do that!! I will try to be better. So, a lot of the time, I'm sitting in my house, or sitting at work, researching and looking things up on how to live with this and try and have a long happy healthy life. I've read many an article on it, and I read the articles posted in our Facebook groups, always looking and learning because I want to KNOW what's going to happen to me. I want to be somewhat in control of a situation I have absolutely NO control over. I've researched adoption options because I don't want to think I can't be a mommy someday. I've looked into diet and cut out inflammatory foods (day 3 of no soda, bread, beans, processed sugar!), I drink lots and lots of water, I'm teaching myself to like teas, I've looked at some cookbooks for recipes dealing with autoimmune diseases. I try to eat totally clean. The only packaged item I bring is my greek yogurt and I've been researching the best one to eat there. I found one with not a lot of sugar in it. I cook vegetables, meat and always make a salad. I am trying to manage our budget so that if I need to be out with this, I can and still make my payments. I'm trying to run my life with this. And, sometimes, it gets lonely. But, that's my fault. It's not for a lack of people.
As much as people dismiss it, this is MY life now. It's my life. It is what it is. It's not going away. It's not going to be magically cured and I'll move on from this moment in time and let it fade into the rear view mirror of my life. Everything has changed for me. My entire outlook is different! Things that I used to obsess over don't have the same amount of attraction to me. I tend to care more about the important things. I tend to also get more frustrated when I hear certain things. My entire life has changed, but I have to remember that this happened to me and nto everyone else. It's my issue, it's happening to me, and it's not the concern or worry of everyone else. They don't give it a second thought, they don't NEED to. I am supposed to take care of/monitor myself. I am responsible for myself. I need to speak up and say when something isn't right for me and not expect anyone else to.
For those of you still hanging on for this part of the ride, welcome. I don't know what lies up ahead. I don't know how I'll react to anything that comes up ahead. I apologize in advance if I snap at anyone, if I spontaneously cry on anyone, or ... if I somehow behave as a bad friend. I forget sometimes that there is other life going on around me. The entire world doesn't revolve around me and my illness.
Alas, sometimes I want to bitch about my life too, you know?
I hate this.