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Sunday, August 22, 2010

Rant and Release

I don't think that it is any big secret that I am surrounded with some complicated relationships in my world. Recent lack of sleeplessness, among other events, are bringing some of this closer to the surface than I would like. Things that I usually shrug off are sticking to me more and I hate that feeling. Mostly because not being able to shrug them off means that I am forced to realize some unpleasant traits making it harder to want any relationship, at all.

I feel like I am in this box, that I can't move in. I just want to bust the hell out of it and say what I want to say, scream it actually. But I can't. My actions and words would hurt someone who doesn't deserve it in the least. And the others that need to hear it, would most likely hear nothing at all. Actually, I can say, wouldn't care at all.

I am dumbfounded, disappointed and just ill with the ignorance & lack of compassion. I am sick of turning the other cheek, extending another excuse and trying to figure out why. I am embarrassed for these souls. I do expect better. And they should expect better of themselves instead of pushing off on others what they feel is acceptable behavior. Because what is acceptable to them, is completely unnatural and hurtful in most circles. This is the face of selfishness.

Do I make you uncomfortable? Hmmmm....I don't really care any more. You don't want to talk about it? Fine. Really, I don't care. I am sorry, but your discomfort is with yourself, not me. Clearly, I make you realize some things about yourself that maybe, you are (and should be) ashamed of. Do not look down on me because I posses certain qualities that you lack. Actually, these are qualities that most have, maybe you are jealous.

I am not the only one affected by all of this and honestly, that's what gets to me the most. I see the hurt in other's eyes and quickly want to remove it. Remove me from this circle of insanity and all these feelings fade (the boxed in ones). I am not someone to run away from my problems. I want to face them head-on. Life is short. Tackle, repair & move forward. I am sometimes surrounded by cowards. Cowards run.

Unfortunately, in life there are some situations we can never completely remove ourselves from. I know this. It sucks. BUT, I can make my life outside of that realm what I want. And I have. Despite all of this crap, I am still amazingly blessed. My little family unit is my heart and soul. I have incredible extended family members that I am so proud of and have so much love for it makes me burst inside with complete happiness. So many filled with unconditional love, acceptance and kindness. There is this "family" I have acquired through a volunteer organization nearly six years ago. I have to say, I never expected all that would come of my deciding to accept the invitation to join. I hope I can give back all that has been given to me. And of course, my many friends. I can't even put into words what they mean to me. Pure, easy goodness, all the way around.

I chose my realm. Simply because it is healthier. Natural. Loving. Kind. Compassionate. There is a healthy exchange of give and take. Expectations are simple. Most importantly, it is honest. And easy.

I feel better now. Got that off my chest. It surely won't fix anything. I know that I have done all I can. I know that some of these unpleasant behaviors are a bi-product of environment. We can't choose where life puts us. But we can choose what we make of it. Some make better choices than others. I made better. I am not sorry for that.

Friday, August 20, 2010

So Close

4:00 a.m. and I can't sleep. Actually, I have been asleep for about 4.5 hours and that seems to be all I can get in. My mind is all over the place. So much has been happening and I have to admit that I am quite anxious.

I am so very close to getting answers that I have been looking for. For years. At the same time, even though I have been reassured that this will not be the case, I am afraid of no answers, again, at all. I am stuffing anger and frustration down like an awful meal at a very kind friends house. Trying to ignore how bad it tastes and can feel it about to erupt at any time. I am waiting. And Lord knows, I suck at that.

I have been feeling awful, crappy, honestly for a very long time. The worst of it being the past eight plus months. If it were just me, if nobody depended on me. If I wasn't a mother and a wife, among other things, it would be easier. But I, like most people, hate to disappoint. I hate to deliver any less than what is expected of me. So feeling like this, puts me in an awful position and often makes me feel much frustration. That smile on my face...not sure, some days, how I get it there. Wait. I do. My kids. The absolute love for my three beautiful children. I don't want to nor can they afford for me to fail them.

For the past three weeks I have been on this incredible ride. All of the sudden there is this acute awareness that there has been and is something really going on with me. My body is being tested at constantly changes levels of steroids. With this has been the reality that I have to really check in. Get over the fear that I will be, once again, given the shoulder shrug as to what is going on with me. There has been this chatter...with nothing coming of it, of a couple of autoimmune diseases. But, hey, I know that my doc is dealing with this with another patient. If it was to be true, there is no way he'd miss it right? Especially when he questioned it so many months ago. Right? I mean, really, if there were suspicion, he would have addressed it, right. Wrong.

I was told, at first, that the exhaustion was due to the "virus" (they think) that I had over the winter. You know, no biggie, a little fluid around the heart and lungs. A month or so later, when I still was struggling greatly, the answer was that I was probably not moving around as much because of the unexplained whatever (they never had an answer) from the month or so prior. Really? Because I have three kids (that's the least of my crazy life). Not moving? Enough? I wish I would have told him to kiss my ASS! But, once again, I did not push. He's the doc, right? He has my charts, labs, etc. He knows. Right...

Just so we are clear, I know that doctors are NOT magicians or miracle workers. For the most part, I love my practice. I trust them with my children's health. But, there have been some changes there. Some not so desirable. I am not the only one with this complaint. I will also share that at a very high point of frustration, about a month or so ago, I called the office and expressed this. I was angry. They agreed that my concerns were brushed off where they shouldn't have been. They told me that I should have called back in and expressed this sooner. I wanted to let them know that I was beginning to feel like a complainer, that I wasn't being taken seriously because I was an overweight, busy mom. They said, "We know our frequent flyer's, our complainers. You are not now or have ever been one." There was admission that the docs have about 15 minutes per patient and unfortunately, some get lost in the shuffle. Assumptions are made. For me, this is a really bad combination. If I even begin to sense that the docs think it is no big deal, I back off. I am afraid of sounding like, well, a complainer. I know that this is my fault. However, I did an awful lot of pushing this year. Which is very hard for me to do. That is how bad I was feeling.

I decided to take matters into my own hands. I am glad I did. Can't imagine what I would be feeling like right now if I didn't. After complaining, a lot, of all over joint pain, I was given a script for Prednisone. In that same visit, after insisting to them that they let me pee in a cup (they were convinced, again, that my flank pain was muscle related. I knew they were wrong), they came back and said, indeed, the infection was back and that I had to hold off on the Prednisone until the kidney infection was clear. Fine. That was in June. I waited. Kidney infections weren't getting better. Nobody had answers. Surprise. I was so sick of being sick. I called both my primary and nephrologist (as though I was a hostile kidnapper or something) and said, "I am taking the Prednisone (having very little faith that anything would actually come of it). I don't care any more. I can't go on like this." And so I did. Thank God I did.

Everything has gone from a slow moving pace to this frantic, "OMG! We need to get her fixed!" Seriously though. Whatever the outcome. Whichever category I fall into, I am alright with that. You see...I will have a PLAN! That is the part that is killing me. Just tell me what I am dealing with and lets move on. Move forward. I don't like this gear I am in and have grown quite restless with the scenery.

With a few exceptions, I am not really all that bummed with what I am most likely facing. The reality is that I have had this for what seems like forever. The best part is about to begin. The part where I don't have to feel like nobody gets it. I can and will allow myself rest, if needed, where needed and not feel guilty or weak about it. When I wake in the morning and feel that familiar feeling of, "I don't think I can do this today", I will be alright with that. I will do what I have always done. Get up and do it. It will be different because there won't be this helpless feeling that I usually keep stuffed inside. I will have a PLAN. Answers. Freaking ANSWERS! It won't be an excuse for me to expect any less of myself (if you ask around, the most common complaint is that I expect too much of myself). I know that I will test my limits. But I will understand those limits if they are not what I hoped or expected them to be. There are so many other diseases, illnesses out there. I'll take one of these.

I got an amazing e-mail from a friend. She has Lupus. She wrote to me of her story, her battle for a diagnosis and the course she has been on since. I admire her. She so much looks at this as I do. She wrote about the day she was diagnosed. She couldn't help but smile when the news was given to her that she had Lupus. I get that. I have been there (with other issues). I know that feeling. You can't help but smile. For me, that smile is a mixture of, "YES! ANSWERS! Somebody gets it, they believe me, I am NOT crazy!". And of course, to those who doubted..."IN YO FACE!!" And ultimately, knowing that a plan was soon to follow. A better life was to begin.

So the anxiety, is more because of the waiting. Also because, I want to inform myself, but am still struggling with that "what if they can't find anything". I don't like starting fires where they aren't needed. So as much as I think I have pulled my head out of the sand, I keep finding myself wanting to stick it back in. I have to keep reminding myself that, as the doctors keep putting it, "The red flags are up and flying!". I have to have faith. That's a tough one. Because I am exhausted and I don't know what's next if there is nothing there to be found. Understand that I have been dealing with unexplained medical issues for nearly 16 years. Not saying that they are all related, though, I suppose they could be. But so many unexplained things. So much head scratching and guessing. With no answers. This is where my fear stems from.

So, as crazy as it is, my fear does not lay in the final diagnosis, it lies in not having one at all. I am not hoping for illness. I am there. Just answers and a plan. So I can be all I am needed to be.

Saturday, August 14, 2010

Putting it ALL Out There: Tic-Tok...

Putting it ALL Out There: Tic-Tok...


So clearly this blog has not gone in the direction it was originally intended to. I offer no apology for this because it has been a release for so many issues. I know that I am not alone in this and that most likely, those issues, they contribute in some way to my current shape (ha-ha). There is something freeing about putting down, in writing, what is going on. To look back and read my previous posts, is actually pretty empowering, for me. I see where I have been and how strong I am. Somehow, in writing, I am very clearly able to express what is in my heart and head. I don't care who reads it. There are no lies. If you don't like it, you should examine why. Shame can come in many forms. Just like hurt. I usually get angry before I realize that what I truly am is, well hurt.

I had no intention of releasing some of what I have. But, this blog, had been named, "Putting it ALL Out There". As with any injury, a Band-Aid will work, temporarily, but if you don't examine how it happened, you risk the injury again. That's where I was stuck. This issue with weight, we all know is not about the number on the scale or the image in the mirror. It is about the person, carrying all that extra poundage. There is no blame. Nobody sat there and shoved the food in. I did this. I know that. Granted, I do have a few factors contributing. I understand, however, that had I made myself a priority sooner, maybe things would not have gotten so out of hand. That is all on me. I know that I have a tendency to put too much ahead of myself. We all do that. Especially women. We look to our left, right, in front of, and behind to see if we are measuring up to some ridiculous standard. Although, women are incredibly smart, if were were smarter, we would look closer and see that nobody is really getting it all done. We all have areas of failure. It is how we accept those areas. What I mean is that I would sit there and beat myself up relentlessly about all that I wasn't able to get done. Now I know that nobody gets it all done. It is how you choose to deal with that. I am learning.

For all the craziness that has been my life, I turned out alright. I am amazingly blessed with some beautiful people in my life. They are my brass rings. I am sure that I have said this before, I'll say it again. I believe that everything in life happens for a reason. A very smart friend of mine added something that makes that statement even better. She said, "We may never know or understand the reason for it, but there is a reason." . That made it all the better for me. Because as much as I believed that there is a reason for everything, the "why" always bothered me. In my situation, I have always thought that my purpose was to end a cycle and to prepare me for, give me the emotion to, raise my children. One in particular. I know I was right. Because it was actually said to me that he may not have fared as well in the environment that was my childhood. I know that is true. I also believe that it is what you make of the situation, once you are freed from it. That's is where I have been for a long time now. It hasn't been easy, because I find it easy for me to empathize on an unhealthy level. Sometimes, an all consuming level. There needs to be a distance so that I can remain objective and guide or care as needed. That takes time to learn. It is a painful lesson.

Healing. I think that is path I have been on over the past year. First with the recognition that I am neither truly happy or healthy in this state and that I needed to do something about it. Secondly with the truth that I was putting myself, for the most part, in that unhealthy state. Ultimately, I am responsible for me.

At a crazy chance the other day, I was sitting and folding laundry. I picked up the remote and started to flick through the channels. Since we don't have cable, this was a short experience. I saw Oprah. Didn't think she was on anymore...however, there she was (a REASON, perhaps?). It was a "Look at me! I lost XXX pounds!" episode. Blah blah blah blah blah. I sighed. Really? Now? I need this like another pair of sock to match! I was just about to change the channel when one of the women were asked by Oprah what the change was. The woman's reply, "I realized my life was running me and I wasn't running my life.". AHA! There it was! I was clutching an unfolded item and just sat there while her words ran through my head, over and over and over. That is exactly how I feel!

I want to run my life. I want to flip it around. The best I can describe this is as is labor. Sorry, but it is perfect. When you are having a contraction, the game, the rule is to stay on top of it, stay ahead of it...don't let it get above your level of control. will loose control and the pain is overwhelming and exhausting. You become drained and unable to focus for the next one. And there WILL be a next one! I know this...I was good at this! Trust me, between child labor, gall bladder disease, rupturing cysts and kidney spasms...I am damn good at this! This is what I need! Now, how do I apply this to life?

Right now, to keep you updated, I am still not in a most healthy state. Currently, I am taking steroids. It was a shot in the dark to see what would happen if we tried. OMG! I feel/felt AMAZING! I could move. I was a REAL mom. The stairs weren't a painful obstacle and the cane at my bedside was beginning to collect dust. I could stand from a sitting position, without pain and I could open and close my hands. However, that was for 5 days. On day 7 (there was no wean down) I hit the wall. My body started to cease up and I felt awful. My lungs felt as though they were being squeezed. I have been put on to wean down again until I can get into the Rheumatologist (not until 10/01, they are working on getting me in sooner). I can feel the clock ticking and my body is already reacting to the weaning process. I am not a medicine person. This is one of two drugs that have ever scared me to be without. I understand the risks of steroid treatment and that scares me too. BUT...the feeling of only slight discomfort...and the look of my ankles...I HAVE ankles again! They are cute in their non-swollen state! Not only did the meds take care of the joint pain, but I haven't had ANY kidney issues and there was another issue that was cleared up as well...had that one since a teenager (stomach issues)! Again though, I wish I could express to you the fear I have of the pain returning. It is very stressful. There is so much I want to do. Tic. Tok.

I guess the point of this somewhat random topic blog is to let you all know that I have not forgotten and I have not given up, still. This journey has been more of a process than I bargained for. I am alright with that. Except for this nearly 9 month illness track I can't find my way off of. Again, a reason for everything, right? I hope that the reason for all this is that, in my journey, I can help someone else too. If it counts for anything, I have had a great loss in the time since I started this. Nothing measurable on a scale. Hugely immeasurable lessons in life.

Next lesson: Learning to run my life....

Tuesday, August 3, 2010

Bite Your Tongue!

The past couple of weeks have been quite incredible. Actually, I could say that about this past year. I have this strength, that others very close to me are confident I have always had. I can't say I ever really thought so. Looking back, I should admit that I have always been strong. In the past that strength was used where I needed it most, without me realizing. It is what made me who I am today, what saw me through many rough times. That strength was what made me stand and not crumble in the face of life's awful realities. It has always been there. I just needed to shake the crap off of it.

I constantly find myself conflicted, about who I am. At the core of that are the unpleasant things that have been said to me in my life. Harsh, sometimes hateful things no child should ever have to hear. Those words stick with you and echo in your mind. In those moments, it is hard to believe anything else to be true. Mostly because they came from a source that was supposed to be of unconditional love. I have to work very hard to shake those words and sometimes relive what was really going on to remind myself that those words should have NEVER been spoken. You would think that was enough. It's not. I am so blessed to have many around me, who think a lot of me. I am sometimes so uncomfortable with their compliments, because as each kind word pours out, the harsh echoes in my head bounce relentlessly as if I am not to forget who I really am.

The words will always be there. It is the power I struggle to take from them. Because they were delivered by someone that I sought much needed approval from, for years. I can honestly say I no longer require approval or praise from that source. I have forgiven, but my heart still hurts. That is OK. That hurt makes me a more compassionate person and sometimes, I think, really good at examining all sides of a situation. I have been told I am a great listener, I think my experience has lended to that attribute as well. Not being heard, is an awful feeling. So I forgive. Forgetting is a whole other experience. You simply cannot control what your mind recalls. I look at it as a defense mechanism; remember, so this doesn't happen again.

Now, it's not that I think there are people out to get me, or anything like that. However, I have a tendency to want to fix and shield others from hurt. In the past, I was able to help some, but I also got burned. We all do. Life's lessons, I guess. There are things about all of us that draw certain others to us. I am loyal and honest. I am compassionate. I am a hard worker that will do whatever I can to help you. I want you to be happy. I want everyone to be happy. Sometimes these traits are a huge target. I have been hit many times. And I stand up for more. I am sorry, but I am not a fool, not any more.

Don't ask me to engage in your games because you know that I "understand" what you are going through. I am not responsible for your choices. Please don't try to make me feel guilty about that. I am done taking one for the team. It was a lousy team anyhow. Understand that I do love you, because that is who I am, but I am unsure that you truly deserve my love. I will continue to give it because I cannot control my heart and I don't have it in me to be anything but loving to you. Appreciate that and be proud of me for it. Know that this has to be incredibly hard for me. Understand me. Don't come to me, even though you know I'll most likely say yes. Because I will try very hard not to. Step back, look at what is happening here and show some compassion. I am more than fair to you, please be the same to me. Stop being so selfish. Listen, as I have listened to you. With an open mind please. I no longer have the desire to engage with a closed mind. I don't care how long you have been on this earth, there is always something to learn. Stop being so critical. Walk a mile, baby...or less. Know that I am fully aware of all that you have going on (and extend the same to me/us). I am sorry for that, but it is not for me to fix. Please stop being angry with me because of it. Stop. Look. See that it hasn't been easy and there will most likely more rough spots ahead. I will do the best I can to deal with them, will you? Lastly, (know that this is hard for me to write because I am not good at self praise) LOOK AT ME! Look at all I have come through and who I am. There are many who have been through less and come out far worse. Give me some credit. Stop trying to break me down. I no longer care if it makes you feel better about yourself (the only reason I can think someone would do these things). Find something else to make you feel better about yourself. It can no longer come at my expense.

The numbness has faded. The guilt no longer works. My focus remains on my family and those truly in need of what I have to offer. I find it funny how this seems to anger some. Oh well. I guess I would be upset too, if an old reliable toy broke down after years of abuse. The difference is, I would look at it and think about why it stopped working and maybe realize had I taken better care of it...I'd still have it. Others see it as a stupid broken toy. That's their perspective.

It is a hard thing for a person like me to say, "I don't care". But, for the most part, I don't. I know that things do, will and are going to get to me. The hope is not as much as they used to.

Right now, I feel like I have lost a good ten pounds, physically. Emotionally...immeasurable!