D i v a's blog: "Melanie's scrumptious notes from Sweetsville!"

2008 has been a hell of a year for me in terms of health... My body has gone through so much since January, it;s been one thing after another, and emotionally it is finally taking its toll. I am not sure how much more I can handle... January I started having severe charlie horses all over my body, legs, feet, arms, sides, neck.. weird places. Terms like Fibromyalgia were thrown out. I was given pain meds for them but I don't like having to resort to taking medication for pain when I've dealt with the forefront of it my whole life. The cramps are a bit more few and far between now, thankfully, but when they do appear they are fairly severe and I get them multiple times in a row, the one morning I woke up and had 9 in my right leg and 4 in the other all in a row... End of January I have an accident and fall on the ice twice in one day, once at work, once at home. I ended up hurting my back and my knee. 6 weeks of physical therapy and worker's comp. My back still bothers me a bit to this day, I've never injured my back before, and it's in a crappy spot in the lower back where you can really never get comfortable. And when I am walking around it bothers me a lot. During that time I started getting horrible looking lesions all over my legs, very painful, discolored, just ugly-ass blotches all over me. Turns out the injection I was on decided to turn against me after 6 years of being on it, and I developed a rejection-type-allergy to it and it poisoned me. It took a while to find a new medication to replace it, in the mean time, without the medication, I relapse very badly. Some days not even being able to get out of bed on my own or dress myself. So from Jan-April, all my doctors went back and forth trying to find the right medication to replace the injection, in the mean time, doping me up on steroids to try and make up for the loss of the other medicine. Anyone who's been on prednisone knows what it can do to your body and mind. It made me miserable, moody. And of course the water weight, and what I call 'steroid face' the chubby cheeks one can get from being on steroids for a while. From being on such steady high doses since January, now my body is addicted to it. I try to ween myself below 20mg a day and instantly my body relapses. March, my knees were doing fairly badly, partially as a result of losing my most important medication, needed cortisone shots. Early March I had been talking with an ex who wanted to get back together with me, he was a great guy but during the time I was seeing him, get this, he was afraid I would be too intimidated by his health problems, he had leukemia... a few weeks later we got into a little fight about how he abandoned me for half a year because he didn't want me to know about his health.. a few days later he fell into a co ma and his aunt called me telling me he passed away... I blamed myself for the longest time, occasionally still do. 'If I had been nicer would things have been different?' If I had been nicer to him while he was there in his hospital bed, telling me how much he loved me, maybe he'd have wanted to be stronger enough to fight through... Between April and May I was doing well! I was healthy with little pain and they had found a new medication to replace the Enbrel injection. In May I even went on vacation by myself for a few weeks. Now the end of June I start feeling massively fatigued all the time, my neck is swollen, I just plain feel miserable, I'm losing weight and not eating as much and all I do is sleep when I am not working. Docs ran some labs and my wbc and lymph counts are high and an ultrasound revealed a cyst on my thyroid. A new specialist for Mel? Sure why the hell not. It just seems like when one thing is taken care of, something else has to go wrong that no one can find answers for. It's getting so frustrating, 7 solid months of this, and I just don't wanna do it anymore. My parents have been nothing short of super supportive and helpful during everything I have been through this year. They see how hard I am working on top of all of this and they know I am really trying. I've never been one to bitch like this in such a 'why me?' fashion, because I know there are so many in the world so much worse off than I, but I am starting to reach the peak of my boiling point here. I am just ...losing my spirit. I'm always known as the happy one, the strong one, the positive one. Now my doctors think I am starting to get depressed. I guess considering everything I've been through, even a healthy person would be... but I'm the happy one... aren't I supposed to stay that way? I'm breaking...

I know in my last blog I spoke about being strong, holding myself high and being positive. Well yesterday I spent the day out of town in the hospital for some routine treatments, to have some things taken care of, and also because I am very ill right now. I was a bit humbled by what a new staff member said to me. She was taken aback that I was 'so young' and yet had such an extensive list of health complications and active medications, and was in an obvious amount of pain, yet I was smiling. 13 active medications, she read off. She'd look at me and back at my files, and then at my mother.. "So young"... she said, "and look how bright and pink you are, it brings out your spirit". Pink being my trademark color, of course. A bit later on I had to have some education on a new treatment I am going to be given, and it's high risk of me developing lymphoma because of how advanced my disease is and whatnot. This is the first I've heard of a high risk of cancer for me, but apparently it's something I must heavily monitor for now. So naturally now I must be careful and make sure all my meds are taken to schedule, all my infections are cleared up before I go back on the suppressants, TNF-blockers, etc. He wasn't so thrilled that I got my nose pierced but he was pleased that I was taking good care of it and cleaning it a thousand times a day. :P I received the new medication today but I am not to start it until my infection clears up, at risk of developing an even more serious infection. So hopefully by next week, my body will start returning to some small form of normalcy. I had my knees worked on a bit yesterday. Drained, injected, poked, prodded, and somethin to do with a spur in the right one. Of course I never actually watch, ugh, that's creepy. There's all kinda instruments all up in my kneecapular areas. lol. I don't wanna see that. Well my mom watched and she was amazed that I didn't flinch, actually so was the doctor. Honestly, I'm just used to it. She told me how strong I was and that she didn't know if she could have been so brave, especially with everything I have been going through physically and emotionally the past month or two, and the doctor said 'neither do I, it's gotta be painful, give yourself some credit'. I really don't see myself as strong as everyone else seems to, for me it's just a second-nature part of life, really. I'm young and I'm scared a lot, but I'm trying to be strong... So I gotta stay grounded for a day or two... I'm bored out of my mind and in a good deal of pain. Someone call or text me, lol.

Yeah, I never blog, but I am home sick from work and all the real blogs are going to be on my website... but there's a lot I want to vent about first... I hate complaining about my health, but well... I need to complain about my health... :P I have been without my meds since January because the insurance company has taken to long to approve it. So in the meantime I have been subbing steroids for the missing med, in the process gaining weight... I am self conscious of my appearance to begin with but now I'm all sorts of chubtacular... blah... I haven't been this ill since I was a kid, but my immune system is being pulled through the ringer. I know no one has to understand or care, and I try to be the happy one, the strong one all the time, but sometimes, it's hard and people don't realize I need some down time too. I do have some really great friends, my amazing family and a wonderful girlfriend who understand. I keep randomly falling asleep, going through mood swings, random muscle spasms, then there was the back injury. But thankfully that's over. My med was approved TODAY and should be at my door Thursday. Tomorrow I go to Hershey for routine treatment. Hopefully I'll be seeing some forms of normalcy soon. On another note I got a raise and a bonus at work. I am thrilled to be making good money when for how many years no one would accept me because of my health. I can afford nice things for myself and also to spread some love around those special to me who deserve it more than they know. Like my family for instance, and Jenn and Barb, who always helped me when I needed. And Debbie and Chrissy who refused to let lack of a cash flow hinder having a good time with friends. Sometimes I don't quite know how to say Thank You, so I just do little things like buy drinks or shots or little gifts... how can you pay back what such amazing people have done for you for years? I mean in the last two years I made some new friends, rekindled some old friendships, and fell in love. The new friends turned out to be amazing, inspirational, encouraging people... I really look up to two of them, still do. They've both been role models to me in more ways than they know. I've admired them and all they do for themselves and others. They never bitch, they work hard, and are so loved and beautiful... When they get involved in drama, they always follow their hearts back to what's right. They have fun, real fun, and never let anyone or anything make excuses for them. To be frankly honest... I wish I was as beautiful in all ways as they are. Body, mind, spirit... But I am still young I guess... I miss them terribly. I never let heresay bother me in trials, why do I let it bother me now? Ah well. Everyone has things happen and things get put through the ringer; things like words, my health, friendships, things get twisted and people get hurt, but what can ya do? Heresay always becomes manifested in some way, 9 times out of 10 untrue, but I don't let words bother me anymore. I'm still the 'happy one'... or at least I am tryin to be. On a-nother-NOTHER note... I got a new Louis Vuitton purse, a Burberry Purse and a Pink Blackberry Phone. And it feels damn good knowing I worked for them all, myself. :) I have a few grand in the bank, and a tax return coming. Nice. Ooh ooh a-nother-nother-NOTHER note... I got my nose pierced! Yes the good little girl rebelled :P Hahaha. Jenn took me for my birthday. I like it. Pics to come? Time to get designing on my website blog. It's gonna be about really mundane subjects really, nothing too personal, just opinionated crap :P PS I have been constipated for days.. help? I need to crap.. :( xoxoxo, Melanie