In the beginning there was a patient with Wegener's Granulomatosis aka Vasculitis aka evil fucking disease. I'm starting his blog to document what it is like living with a disease, but more specifically living with Wegeners. I highly doubt I will have a following. I know I'm mostly talking to myself. I'm ok with that though. Even if one person gets some knowledge or comfort or really anything from this blog, then it was worth my time. I know when I was first diagnosed, all I wanted was someone to relate to...someone who had been through what I had just been through and could listen with a knowing ear. If I can be that ear to someone then I feel like I've achieved one of my life's purposes.
I will probably reveal my story in one of the blogs to come, but it is complicated and long and today I just want to talk about today. I know each day is going to bring it's own challenges and obstacles, but today I'm feeling like the obstacles are many.
For the past few weeks I have been fighting a respiratory infection of some sort. I don't know if it's bronchitis or something else, but I know that the Levequin (antibiotic) is not working to alleviate any of my symptoms. When I cough I feel like something (my windpipe maybe) is collapsing. It is the strangest feeling. I cough like normal and then all of the sudden it's like someone has launched my lung upward. It brings new meaning to the term "coughing up a lung." Of course the hydromet cough syrup doesn't really help and I'm left to deal with it. I feel like alot of the things that happen because of Wegeners or because of the medicines I take to control the wegeners, are things that have no solution...I just have to deal with them.
I'm also dealing with extreme fatigue. I know that this disease can make one tired, but this is fatigue like I haven't had in a long while. It's like I cannot get enough sleep even though I'm sleeping through most of the day. Unfortunately, I don't have the luxury of sleeping through my hard times, because I have two children (ages 4 and 2). Don't get muy wrong, I'm SO grateful that I have them. They are the reason I keep going and the reason that I've survived the last 2 years. It's just very hard to be super mom and have wegeners. For that matter, it's hard to deal with fatigue or pain, when you have two little people that expect nothing less than your best.
Another thing I've been suffering with recently is some depression. I've dealt with depression in the past, but I can honestly say that I got much better when I started the Zoloft and was given a second chance at life. The weather has been very cold and dreary though and that makes my mood very blah. I know I'm also depressed, because I'm just sick and tired of being sick and tired. I look at the state of my house and I just want the energy and motivation to clean and decorate for Christmas. I want the energy to play with my kiddos. I want the energy to dance and sing and really get into life. Instead I'm in bed writing this blog and thinking about all the things I wish I was doing. Another thing that causes depression, is my weight. I'm the biggest I've ever been in my whole life. I know the doctors and really everyone I talk to says that it's the prednisone (steroids) that make me gain the weight, but just because I know WHY I'm gaining weight, doesn't make it any less annoying and painful. When I say it's painful I mean literally and figuratively. Of course it hurts my self image and it hurts my sex life (because I don't feel pretty any more), but it also HURTS to be 230 lbs. It hurts my knees and it hurts my back. It hurts to bend and it hurts to breathe. It takes longer to do things and requires more energy. Part of me just wishes I could just not eat...that would make life easier, but unfortunately I enjoy food too much.
On that note, I've been nauseous the past few days. Lawd only knows what this is about. I'm not usually nauseous, but my stomach has been torn up for about a week or so. I had a couple days of diarrhea and now I'm past that, but left feeling super blah. I've only puked once, but I kinda feel like if I could puke more I would feel better. I feel better when I'm actually eating (like crackers or soup), but after I'm finished eating, I go right back to feeling like I have a hangover. UGH! When you combine this with the cough, I'm left feeling like super crap.
So what this all boils down to, is today is not a good day. IT hasn't been a good day for about a week now. I don't want any readers that I might have to think that this is going to be the tone of every entry though. Today I'm having a pity party, but not every day is bad. Wegener's might modify my life, but it hasn't destroyed it. I will continue to push through pain and depression and disease and get as much as I can out of life. I will not let Wegeners win!
Well that's enough for now. Thank you if you are reading this!
