Tuesday, April 30, 2013

You're A Hoarder

Over the past month or so we have been packing stuff up in boxes because we are planning on moving soon. We figured if we get a head start and get it all packed now we will be ready to go as soon as our house sells. Who knows how long it will take to sell but when you have two perfectionists living under the same roof there is a lot to do to get ready to show your home. We both figured it would be much easier to prepare without all the stuff and clutter we have collected, much without even realizing it. I have to admit before we started packing I thought we didn't have that much stuff. I am really not a saver per se but when I started filling boxes for Good Will, filling trash bags and the boxes to take to storage I couldn't believe how much stuff we had. I started little by little parting with so much stuff that was just there. Stuff I forgot about, stuff I might need someday, stuff that was useless. Last Saturday my daughter Steph, my twin when it comes to being brutally honest, said to me, "You're a hoarder." The same person, mind you, who when she moved out of her bedroom had so much stuff you couldn't even see the floor and she had the guts to say that to me? Well, guess what? As that day went on I looked at her and said, "Oh my gosh you are right I am a hoarder."  Those three words coming out of my daughters mouth about knocked me over but also made me think even more about all the stuff. How did we collect all of this? Where did it all come from? Seriously?! I thought for a bit and said, "Want to go to Mr. Burger for some chili dogs?" That'll cure any kind of serious thinking you don't want to do.

Packing before this past Saturday was excruciating painful. Don't get me wrong, we are ready to move and live our new dream. This house served us well and the memories are one's that will live in our hearts forever. I am not having that hard of a time with leaving this house, the property maybe a little, but not the house. While I went through the stuff there was the stuff that was just that, stuff, but then there was more. How do you decide what to keep? I don't mean the stuff I mean the things that have meaning. This is where my hoarding begins. Beautiful clothes and quilts, wall hangings my mother made all with her own two hands. Things that were my Aunt's that have such meaning to me because they remind me of her and help me remember where I come from. Stuff that was my Grandma's, her silver, her hair brush, the old glasses I remember my family drinking their highballs out of when I was a child. Then there are all the papers I kept from the kids when they were in school. Every report card, every conference paper, art they made that brings tears to my eyes. The rocks and stuff given to me by the grandchildren and on and on. You see, for me, you can take all the furniture and junk like that and burn it but don't touch the things that have sentimental value. The things that make up who I am. Like I said the house isn't going to be that hard to leave we can replace it easily but the things that mean so much are the things I cannot part with. The reminders of time gone by, of love, of people, of good times, those are the things I hoard. I must admit the one part that can't go with us that I will miss terribly is the woods out back. I will miss the deer and all the other wild life. The beauty of nature can engulf me and take me to another world I love that about nature. When I go back there I am in pure heaven. I will miss it but I will also remember the sweetest memory of being back there, seeing how much Hunter and Addi love to play in the pines and run around looking for signs of nature, picking up sticks and pulling the algae out of the creek, falling in the mud and laughing about it. It will be hard to leave that but we will be moving to another wooded area where we can make new memories, these new memories we will be taking Mya along for the journey.

I think we all must come to some understanding of who we are and where we come from and if we lose that we really have nothing. It really has nothing to do with the stuff its the trigger in your brain that goes off when you see a certain possession. I know for many some of those memories bring back pain and sometimes it is the best thing for us to deal with the pain so we can move on and do better for ourselves and those around us. As I weeded through the "stuff" another realization came to mind. I remembered when we moved my Aunt into assisted living and she had to leave all her stuff behind. She could only take the bare essentials and a few other items that meant the most to her. How in the world did she pick? I can't imagine. Thinking back on how much pain that must have brought to her and at the time I had no realization of that pain and she didn't talk about it. Stuff, yes, but stuff that meant something to her just as mine does to me. The realization that we spend a life collecting stuff only to have a few select items with us when we get old. I wonder if I had to pick only a few things to take with me what would they be? It is painful to even think about parting with all the special stuff that I packed in those boxes even though I know I can keep them, at least for now. But what happens when I get old? Will my children, in-laws, and grandchildren see the value in a glass? In a quilt? In a piece of art made years ago by a little girl or a little boy? I hope that if I make it to that point where I need to decide on just a few things to take with me my children will take the other stuff that means so much to me and tell me they will keep it safe with them and pass it on. Even if they give it away as soon as they get home at least I will know in my heart that the stuff that meant so much to me will continue to give as it has given so much to me.

Once again I hear Steph, "You're a hoarder." I hear myself, "Oh my gosh you are right I am a hoarder." After going over it in my head I now feel I can say, "I am proud of being a hoarder because all of my hoarding has made me the person I am and where I came from. A beautiful life I lived and shared with some very special people." In the end isn't that what it's all about anyways? I believe so.

God Bless!


Friday, April 26, 2013

Fatigue: It Is What It is

I saw this on facebook this morning and I chuckled to myself. You're probably asking yourself, Chuckled, why? The reason I laughed is because I don't care how many times the world reads something like this there is no possible way they could ever understand it, that's all. I look at the photo and think how in the world can she even have a job being chronically ill? I don't know how people do it but I know some are forced to work because the bills still need to be pain and chronic illness doesn't care, nor do the bill collectors if you are in pain or tired to the bone.

It is funny because when someone is sick and I listen to them complain about their cold or how tired they are I usually think to myself, imagine living like that everyday. I don't say it and I know I shouldn't think like that. I keep my mouth shut but my crappy sinner side wants to shout it out. I don't want to be like that it just happens. I apologize. I do my best but sometimes it is hard. Even as hard as I try to understand it all I still can't. It doesn't matter how far I dig into my thoughts there isn't one part of it that makes any sense no matter how deep I go. It's like I want to blame someone so having those thoughts I shouldn't have kind of help me feel better, in some odd way. But it's okay I don't believe we always have to understand everything to go on and make a good life for ourselves. It is almost impossible to understand everything plus what fun would it be if we had all the answers we would never learn anything. It makes for an exciting life because you never know what you are going to get from day to day. You learn to take them as they come.

After my little chuckle I thought of a friend who posts some really deep stuff on her facebook page. By deep I mean really deep some of the things she posts are thing no one else ever ponders about in their daily living. Relationships, hurts, mental illness, and all the other struggles the real world never thinks about unless they are struck by some of it. I read a lot of the articles she posts and I get it. She doesn't get many likes because I am sure the real world skims over them and thinks she is nuts for posting such nonsense. To the real world stuff like she posts really is nonsense. Ah yes, the real world doesn't have time for reading that garble and many times doesn't have time for the chronically ill. Yes, some of the real world may know the person with chronic illness but rarely do they take the time to understand. My heart aches when I think of this. Sadness fills my soul when people don't care or in an odd sort of way don't know how to understand or just care. I get my friend. I know right where she is coming from as we live a different life. We have the time to dissect all that life throws at us on a daily basis. We have the time to try to make sense of it all by reading articles, books, webpages, and other sources that are there for us to process all that is happening to us. Sadly, even with all of the information we pour into our brains we still don't get it so how can we, as the chronically ill, expect anyone else to understand? It isn't going to happen. Well, unless it happens to them and believe me we do not want that to happen. I think, I know, this is why the little things mean so much to us. Example, when I turned on my phone this morning it went off three times with texts messages, and NO I do not sleep with my phone on, sleep is much more important to a chronically ill person than the phone. The three messages were from Katie, one from Steph, and one from Richie. I thought to myself before I read them, "Thank you God! What a great way to start the day." Hearing the three rings brought me joy that maybe a working person would think, who needs what now. For me it was like a big gift wrapped full of love. I live for little moments like that which are senseless to someone else but to me are my world.

Yes, when you see me out in public I look just like you as do all my chronically ill friends. Yes, there are those rare few who may use walkers, have oxygen tanks, or cane, etc but for the most part we look normal. The sad part is under all that lipstick and normal look there is the person in the photo above. The person you don't see. The person who struggles every time they are doing anything physical. It is funny because I have this cheerleader in the back of my head all the time telling me, you can do this. The voice pushes me when I am loading groceries onto the belt at the store, loading them in the car, or walking into a business to do what has to be done in life. Every time I have a doctors appointment the voice tells me it will be okay even when I don't think it will. You must understand when you are ill you are tired and like the above states the only way you can even remotely explain it is imagine having the flu all the time. A way I like to explain it is if you ever had surgery and you know how tired you get after surgery? You can't explain it but the fatigue is there and real, you get tired very fast. Well, that is how chronic illness fatigue is. I can be doing okay and wham it hits and I have to rest. My body will scream at me to sit or lay down NOW. I can't explain it just as most cannot explain that fatigue after surgery. It isn't a, I need a nap tired, it is different, a nap doesn't make it go away, it is always there. I wake up tired even when I had ten hours of sleep. It is a way of life. Just a being healthy is a way of life for others, illness and fatigue is a way of life for me and my chronically ill friends. It is what it is.

God Bless!


Wednesday, April 24, 2013

The Experiment

I like this. I believe this. I try to live by this. I believe you can forgive. I believe you can never forget, at least for me. I am human. I fail. End of story.

I left facebook for a little over a week. Ya, I know some sort of world record for someone who tries to encourage others not be so hard on yourself and to believe in yourself. Well, I cracked and the message on my wall was sending me to dig deep and I realized I was not allowing myself to live the things I was posting. You have to understand, I try, but just when I think I had it all figured out and I am okay- wham something happens that slams me down into the dooms of hell. Seriously, I am fifty years old you would think by now I would have it all figured out. I don't. I don't understand some people. I can't figure it out. I try as hard as I can but I can't get the answer.

I decided when my father in law died to try something new. First and foremost you have to understand my father in law adored me. He told me all the time. he thought our kids were the greatest kids on earth and he told me that all the time too. I have to admit it always made my heart warm and fuzzy when he would tell me that. If I could tell you more of the story it would make sense but I can't so I know some of this sounds both awful and crazy at the same time. After dad's funeral I decided when I was around certain people I was going to pull back. I wasn't going to be the first one to go up to them anymore. I wasn't going to be the one to always try to open a conversation, which always was about them anyways, but I was always the one to start it none the less. Anyways, dad died a few years back and the few times I have seen certain people I have put my experiment in the works. Funny thing has happened in the process of this experiment. Over time I have realized in so many of my relationships, these specific ones, that I really am always the one to start the conversations. Certain people I have seen since have not started the conversation as I stood back and put the experiment into motion. I had the ah-hah moment of realizing that many of the people in my adult life have been those who want me to be there for them all the while never being there for me. It's okay really, but odd at the same time, at least to me. I find it particularly odd that the people who should care about me and my family don't and the people who shouldn't care about me and my family do. I don't understand so many things right now. I don't understand how my daughter can have children and certain people can not even congratulate her. I don't understand how people can expect me to do things for them when in reality they are the things they should be doing. I don't understand how people can mean nothing to certain people. I don't understand gossip. I don't understand how people want to be my facebook friend but when I see them in person they can hardly say hi to me. What is that? This makes no sense to me what so ever. I figured that one out too. If certain people are your facebook friend they can nose into your life without having to ever ask you about it when you see them and they can gossip about you. I don't understand relationships that are a one way street. I wasn't brought up like that. I don't understand selfishness. I don't understand people telling other people what they should do or shouldn't do in any given situation. I believe we all should do what is right for us and if it isn't right then we will know and learn our lesson.

Ah, the experiment over the past few years has taught me a lot. All good? Probably not. Of all the good and eye opening that came from the experiment has taught me that when I am mean, rude, and selfish I become like them. I have this gnawing in my gut that tells me I shouldn't be acting like this. I know what it is. Yes, I do. The Holy Spirit talking to me, I know. On the other hand my human side is at its breaking point. How much is one person suppose to take? Yes I know Matthew 5:39- But I tell you, do not resist an evil person. If anyone slaps you on the right cheek, turn to them the other cheek also. Well, you know what? I am sick and tired of being slapped. I can't do it anymore. I have to walk away. It is what it is. People are selfish. I guess I am selfish. I know after thirty years of this I am worn out. I am not willing to allow people to do it to me anymore. I want to scream, "Get over yourself," but I can't.

Just when I think I can't take anymore one of my girls who listen to me and really care about me will just let me spill the beans. I sit and talk while they listen and a funny thing happens in their listening and my talking, and sobbing. I realize it is okay. I realize it isn't me, okay maybe a little. I realize the people who love and care about me the most have my back. They understand because they can see it from my side, they have lived it too. The unfairness of certain situations and relationships. The healing begins with a text or a photo they send me. It starts with the tears. its start knowing it is okay to walk away, sometimes. It starts with a text from Steph last night telling me to come back to facebook because I miss you sooooooo much. It starts with a friend who calls and leaves me a message telling me she misses me on facebook. It starts with love. All the love that surrounds me daily from my family, from my facebook family, and from God. It starts knowing I cannot allow a few rotten eggs to spoil the whole bunch. It starts with me. It starts here writing it all down and processing it in my head over and over and over again. Cruelty. Love. Which one do I want in my life? I know. I knew all along- even before the experiment.

God Bless!


Sunday, April 21, 2013

Will I Ever Learn My Lesson

Back on my blog...that can only mean one of two things, either things are going well and I am here to shout it out to the world or things suck and I am here to whine. Sorry to say it but it is the latter. First I have to tell you most things are going well right now. Yes, I am in pain but at least I am a little less fatigued for some reason and with all that is going on in my sleep life this should be the complete opposite. If you follow my blog you know that I have been having sleep issues ever since I changed my PCP. I have been dealing with this issue since August of last summer and now we are into April and I am still struggling? Along with the foot issue, that according to the foot doc isn't an issue, which is causing me excruciating pain at the end of the day, and along with all the other stuff that is just there all the time. Just what I need to deal with sleep issues. Everything was going along fine for me then whammmm we are going to send you to a sleep doc, do a sleep study, which by the way was normal, send you to a sleep therapist, blah, blah, blah. My life has been turned upside down even more than it was before the sleep issue, that to me, wasn't an issue anyways. Needless to say endless frustration I DON'T need, especially right now. I am beginning to believe you can be forced into having anxiety just because of all the doctors saying you have to go to this doctor, now you have to go to that doctor. What the hell? Yes, I am frustrated and angry right now. I really am and believe me I don't get mad very often but when I do, Arghhhhhh, I am not a pleasant person to be around. I almost feel like I have been taken advantage of. I just want to go back to how it was. Seeing my Rheumatologist and my Neuro, both of whom get me and my medical issues and know how to treat me. Every time I go see a new doc they look at me like I am crazy. Well, I'M NOT, Dammit! I'm more sane than most of them. I wish I could rewind the clock and be with my old doc, putting up with her crappy staff, and keeping what worked for me the same. These people who don't know me come along and switch things and get me all screwed up. It is frustrating.

I am so sick of the medical community lumping us all into one big category. The sleep issue is the perfect example. I need at least 10-12 hours of sleep a night to function properly. It is just how it is and has been for a long time. I don't understand how doctors can tell me I am getting too much sleep. Are you kidding me? It isn't too much, my body is in overdrive with pain, stiffness, fatigue, etc so PLEASE don't tell me that 10 hours of sleep is too much for me. I need that time to repair all the damage that happens during the day. Wouldn't you think the medical doctors would understand that? The words of my Rheumatologist ring in my ears, "Sleep is very important." I remember her telling me that many appointments ago when I first started seeing her. Plus, for me at least 10 hours is what works. Now I am suppose to go to bed at the same time and wake up at the same time so my body gets use to a sleep schedule. Well, I am wondering if there is a way to put my pain on a sleep schedule so on the nights that I wake up 10 times because of pain and stiffness I won't have to sleep until 10am to make up for the time I am in pain.

Today I sat down and talked with family about this issue and they all agree I need to do what is right for me. I need to have a new plan. I need to learn to listen to my intuition and do what is right FOR ME, not what someone else thinks is right for me. I see a doc who zips in and out and makes decisions for me knowing nothing about how I live or what I live with. Assumptions are made and I am automatically put into a category of this or that. I can't even count the times I have said this or wrote it in my blog. I feel like I was sucked in again, more doctors, more tests, more this, more that and for what? Them or me? I am happy with the sleep doc I saw who said that she would continue to help me but this therapist stuff is just not for me. It makes no sense to me. I am wore to the core and I am taking back the control I just needed the shove from talking today, even though I knew all along what is right for me. It is funny how hearing yourself talk and cry makes you realize so much. You are able to process and answer your own questions real fast when you talk about it.

Maybe? Just maybe I am finally learning my lesson? Or at least until the next thing pops up. Oh well, one thing at a time.

God Bless!


Monday, April 15, 2013

My Give A Damn's Busted

You know the song, right? My give a damn's busted. Man, I don't know why this song is the song that comes to mind after I have to see certain people I don't want to see. You know the ones, they think everything in the world revolves around them and would never go out of their way to be happy for you or even ask how you are, but they are right there riding your ass if you don't do what they think you should do for them. Right now I have so much hot steam coming out of my ears I could probably steam clean my house if I had the energy. You see, being chronically ill, I don't have the extra energy to deal with people like this but there are some people you are forced to have to deal with even when you don't want to. I don't do it for me but I do it for someone I love.  I guess that is what true love is, you sacrifice for the one you love even when it hurts you to the core. I don't understand selfish, rude, mean people and believe me if this were someone else I would have deleted them out of my life a long, long time ago but there are those certain people you are stuck with, so to say. Those people whom just thinking of them can send you into the bathroom wanting to puck up anything you just ate, even chocolate cake. Like I said before the stress is no good for me. My eyes have been trembling all over the place, I can't focus well, and everything is so much blurrier. I don't know why I do it to myself. I try to avoid certain people but there are other people I need and want to go see who are in that circle so many times I have no choice.

I know this post goes against everything I stand for. the loving everyone, the caring for everyone, the being there for everyone, but sometimes you have no choice but to remove yourself from certain people. I don't believe God looks down on me wondering why I am being so difficult. It isn't as if I haven't tried. Tried? Hell, I have busted my ass for certain people and the thanks I get is being treated like a common piece of garbage. So, I do my duties, the ones I am forced to do because of the one I love, and I push on trying to forget how fake and terrible these church going citizens are. Hypocrites. I am sorry but I can see why people do not want to be a part of that. It is easy to see from the outside looking in. Just like the other night when Rich and I were out to eat. The two couples behind us talking about church but the whole time gossiping about this lady and all the money she has, and that person this, that person that. Okay if you are a Christian do you sit at dinner and gossip about people? I guess my faith in God doesn't mesh with the rest of the world. That is the reason I have such a hard, hard time with church. I don't think of it as a club. To me my faith is between me and God. Knowing that no matter what he loves and forgives me, even when I write blog posts like this to get out my frustrations.

Believe me if I could write stories in here about the point I am trying to get across you would probably shake your head and say or think, no way, but I won't. It isn't worth it. The best I can do it stew over some things for a few days, move on, and live my life the best I can. It is hard at times. It is hard being the one who always has to make the first move. It is hard when my children have happy events and people, people who should, can't even acknowledge they happened. What the heck  is that? Selfishness? Jealously? I wish someone could give me an outright answer to certain people and their actions. I am up to my eyeballs and to infinity and beyond with having to always be the nice one. I really am. I'm tired, I'm wore out, and I am sick of it all, and my illness makes it even harder. I can't continue down this road, the one way street, like I said before I don't believe God would want that for us, for me. It is better after all this time to walk away from it all. I am ready. Walk forward and not look back. Walk forward and know I have done what I can. Walk forward with peace in my heart that I am doing the right thing, all the while knowing God is right beside me all the way.

I have to laugh at a cartoon thing that says something to this effect. I always try to do right and when I finally confront the bad person or situation it is all thrown in my face and I am made out to be the bad guy. I am pretty sure in this situation this is what would happen that is why it makes more sense to walk away and have no communication except what is absolutely necessary. Ughhhhh sad part is there are people you can never get away from no matter what. You know who these people are and how they are, they know what is right for you and will tell you how to live. Ya one of those. Oh well, whatever. I am rubbing my hands together and brushing away the dirt. It is time for it to be over and I must deal with moving on and accepting some people will never change and I do not need nor want them in my life. Oh and by the way, I am one of those, one of those who are not changing to make someone else happy. I am a good person no matter what anyone else thinks or feels about me. Some just have to get the stick out of their ass so they can walk straight.

God Bless!


Friday, April 12, 2013


I love this little saying it is so perfect for the world we live in. It seems, from my point of view, we are always comparing ourselves to others and always trying to keep up with everyone else. A perfect example and a simple one would be cell phones. You look around and it seems everyone has a iphone now. If you don't then you are so out of touch and are almost made to feel like you don't belong. I don't get it at all. Rich keeps telling me to go get one and it seems I really don't care if I have one or not so when I am out in public and I am forced to use my out of date phone I don't really care what people think but I am sure they are looking at me thinking old lady behind the times. Oh well so be it.

It seems we allow stuff to control us and when someone gets something we have to get something comparable or better, nonsense!. Stuff, just stuff. So trivial on this journey we call life. I watched my father in law for years collect things and when he died a few years back he didn't take anything, not one thing with him, he is now ashes. It's almost comical when you think about it. Fight and work your ass off to buy stuff you are either going to give away or sell, or who knows what will happen to it when you die. I have never been a big saver or buyer of stuff but now that I am packing up the house to move I am realizing all the stuff even a non-saver can collect and it almost makes me sick to my stomach. Ridiculous! I am so anxious to downsize and give it all to Goodwill or to the kids if you they are in need, most of it means nothing anyways. I also notice a pattern while going through the stuff. I am in ughhhhh mood when it is stuff that is meaningless but when I come to an art project one of the kids made me or something Hunter or Addi made me/us I find that is where the joy comes from. I know my face lights up and my heart warms, and at times tears well up in my eye, even know as I write. I think we need to stop getting caught up in what the world tells us. Get this, have that, and on and on. We need to focus on what really matters maybe just a few possessions that bring us joy and unload the rest, it is so freeing.

I watch people compare their children to one another. A different type of jealously. Young mothers almost trying to one up the other, well mine does this or that, is yours. It seems some mothers feel like their child isn't good enough if they aren't doing something someone else's is. It is ridiculous as children all progress on their own level at their own speed. I watched this with my three children. Katie had a horrible time in school it wasn't easy for her. Then Steph went and it was much easier for her, and by the time Richie went it was like he should have started out in third grade instead of kindergarten. It was so easy for him. Every year he would say the same thing, "We learned this last year and I am bored." While I watched Steph struggle a bit more and Katie struggle much much more I tried not to compare them to one another as I knew they would eventually grow up and graduate. Graduation was never an option at our house your WERE going to graduate no matter how hard of a time you had. They all did and now they are all adults making their own way in the world. I never compared them to others kids, they were ours, and we were proud of all of them no matter what. Although I do have to admit, the people who compared theirs to ours got to be annoying. Comments like your children are so perfect or Richie is the Golden Child, blah, blah, blah. Along with those comments were the, "You don't know what it is like to be in the real world because you don't work." I would just let the comments slide off my back. We, as a family, now have fun joking about all those comments but I can say I am a proud mama and I wouldn't change a thing, especially because of someone else's jealousy and insecurity. I hope our children can do the same with their children, Katie and Dave already are with Hunter, Addi and Mya. The world needs to realize and accept everyone where they are at. Just because something is right for you or works for you doesn't mean it is going to be right or work for someone else. I am pretty sure in our society I am still looked down on because I don't work. Kids are all gone and you don't work? What could you possibly do all day. Well, I could turn it right around and say, "You work full time? How do you possibly get anything done." You see there are always two sides to a story and we must learn to shut up when it comes to matters like this. As far as me not working, yes it is hard but It's okay because I am the only one who has to be okay with it, no one else.

Hence the reason I love the saying above: The greatest thing in life is finding someone who knows all your mistakes and differences and still finds you absolutely amazing. How come we don't find one another absolutely amazing? How come we allow jealously to rip apart relationships instead of rejoicing in one another and our successes? Or being there in one another's failures? How come we run when the bad hits? I don't understand any of it. As I have mentioned many times working as a Hospice worker it taught me so much. Watching families who were torn apart for year only to come back together when someone is dying. All the years lost and I will say mostly because of selfishness and bitter jealously. Time- you can't get it back. It is the one thing that rolls on and on with us having no control of it what so ever. You can't take back time when someone is laying on a bed dying it just doesn't happen. Yes, you can mend and apologize and think that it is all okay but it still eats away at people. The living must deal with the consequences of all that lost time while the dying person almost has the free pass. Family dynamics are deep and we don't think about them until something bad happens. It is sad. You know how I know? It isn't just because of Hospice but because I too live it. I have watched it over the past thirty years how evil can tear people apart. So our family, perfect? Nope, it isn't just like everyone else. Us, perfect parents, nope for sure. Our children  perfect? Nope, they have failed right along with everyone else. Jealous of one another? I don't think so. I hope and pray the one thing and most important thing I have taught my children is to remember your family, your brother and sisters are the ones who will be there in the hard times of life. Most others will flee so cling to them. Love them, don't become jealous and hateful, but embrace one another and one that day that you are laying in that bed dying you won't have any regrets.

God Bless!


Wednesday, April 10, 2013

On Being Competitive

When I look back on my life I can honestly say I have never been a competitive person. My first memory of learning about being competitive was in elementary school back in Jenison at Bauerwood elementary school. There were two classmates Bob and Kevin who were always team captains when teams were picked, now those two were competitive. Winning was everything, so you guessed it, when teams needed to be picked they were always the captains. You know how it goes the kids that kind of ruled over everyone even the teacher. Another you guessed it? I was always picked last no matter what. I didn't care all I wanted was for the gym part to be over and I dreamed of moving onto art class, sad part was when I moved to Jenison art was not as important as gym and the opposite was true at the school I came from in Grand Rapids. Oh well, all I know is I hated gym, could have cared less who won, and dreaded even the thought of the next time we had to pick teams or go to gym. One thing I always loved was swimming so in fifth or sixth grade I joined the swim team and I was okay at that. It was fun to be on that team because you kind of played against yourself so it made it easier not having to be a part of a team per say. Then I went to middle school where I started to play volleyball, believe it or not, a team sport. Winning became a little more important, at least to the team, but for me it was all about the serve. I must admit I was pretty good and racked up many a point with my serve. I enjoyed that team it was fun and we had fun together as a team from what I remember.

I look back and remember these sporting snippets of my life and I can see that back then I was not a strong person, physically. I remember I had a harder time even then keeping up with my fellow athletes. I was different but at that time I never really noticed I just thought I hated sports, gym, and anything physical. I look back and realize that even back then I was not in a normal body. Oh believe me there were time I had wished I was. I wished I could have been the one on the grade school team in gym who hit the home run during the baseball game, but I wasn't. I remember that even if I got a hit that involved running and I was a terrible runner. I would start out ok and half way to first base I would putter out. It was shear torture for me as I look back and now I understand why I was always picked last. Did this all start way back then or was I born with it? Boy, school sure can be a place of torture for some of us. Lucky for me I had two brothers at home who taught me how to be tough, not in the physical sense, but in a mental sense. I learned how to be strong even though I wasn't physically strong, I was bullheaded and a hard head, somethings never change. I am thankful for them for helping me become a strong person but in a different way. In a way that says I don't care what others think or say about me, whatever to that crap. I am who I am if you don't like it then don't come around me. I pretty much say it like it is so if you can't handle it then don't ask. A different kind of competitiveness? Maybe.

Although I can say I don't understand being competitive I must admit I am in some sort of odd way that many will not be able to understand. You see, I compete everyday with a body gone haywire. I compete with pain that, if I let it, can bring me down into the dooms of hell, and one some days it does. I compete with weak muscles that keep me from enjoying the world like everyone else does. I compete with fatigue that is beyond anything most people would ever be able to comprehend. I compete with so many other physical issues that the list could go on and on. The list that no one really understand except me because I live the list even when I look perfectly healthy to the real world. You see, I am in a fight every minute of everyday. My fight/competition is against a team of symptoms that can bring a person down physically very fast. But you see, if I allow that team to win, then I lose and I am not going to lose this game. I often wonder about the competitive kids back in grade school. I wonder if Bob or Kevin would be able to handle this game.  Hummmmm I almost doubt it but who knows. The win now is the win in my head. I must keep my mental state at a higher level than most, it keeps me in the winning position. The minute I let the body take over I slide into last place real fast, back to being the last person picked on the team. I can't allow that to happen anymore. Nowadays, I am the team captain. I make the rules, no one else. I am the captain which means if I need help I ask, granted most of the time it is Rich or the girls, but the point is, I ask. If I make plans and the fatigue is so bad I don't go, most people understand and to tell you the truth if they don't I don't care anymore. Being the team captain I use my energy where it is needed and not on the nonsense of others. I have to, if I don't then I am right back in school. This list could go on and on too, but I won't bore you with anymore of my so called nonsense to the real world.

My point is when you are ill you live by a whole different set of rules. The rules your body makes up but your mind must control as best as it can, along with a few choice drugs. Looking back on how this blog entry started stating that I am not competitive, at the end of the blog, I guess I have to change that and say I am very competitive. I am in control, some days more than others depending on the pain or whatever else may be going on, but in control none the less. I use to think the doctors were in control looking to them for relief but after seven years of this I am beginning to realize they aren't. They are people just like us. Medicine is no different to them then it is to us. We go to them for the magic cure but sometimes we don't get it so we have to find our own magic cure, what works for us. Remember, what works for one person may not work for another. You must figure out your own cure. I know I am a zebra to all my doctors and a few of them tell me that straight up. I appreciate their honesty. I appreciate them taking my honesty seriously and meshing the two together to do what is right for me. Even with them I am the captain. I hope that in your struggles with daily living or chronic illness you are able to sit in the captain chair and guide your life without allowing the team around you to have the control, it makes life so much easier that way.

God Bless!


Monday, April 8, 2013

Fall 10 Times Get Back Up Twenty

It happened again. I knew it would. Last week at rock bottom, this week starting to climb back up the hill. I try to be positive, you all know that, but I still wonder if I will ever make it to the top of the mountain. My jolly self wants to believe that one day I will but the negative voice in my head that holds me down so many times is telling me I never will, even as I type this. I am stronger this week and much more on top of things than I was last week. I increased my steroids to 3mg as I figured I was decreasing way to fast. I felt better within two days. I am now down to 3mg from 6mg so I have to look at that as a HUGE success instead of listening to that voice in my head telling me I am so close to 0mg just hurry up and do it. I have to learn to enjoy the ride, even the unpleasant ones and live in the moment even more than I do. I don't know why I have been slipping out of that way of thinking the past few weeks. All I know it that I have to take the control back and I am, at least for today.

We all fall whether we are ill or not. It is a part of life. We all have that negative voice that tells us we can't do something, sadly many people never hear the positive voice that tells them they can do it. The trick is to learn how to block out that nasty mean voice recorder that plays over and over in your head. It isn't easy, I know, but it is possible. What works for me is if I hear the negative I try to think of a positive. It isn't easy and last week as I was so far down and couldn't even see the light it made it very hard to be positive. I thought to myself, this is what depression is like and I am not even as low as I could go. It broke my heart for those who suffer and how they are treated so unfairly, not only medically, but by the world. I am one of the fortunate ones, I was able to go up on my steroids and I began felt better within a couple days. I know for those who are depressed it isn't that easy and they suffer in silence. I cannot imagine living in that hell day after day and I am truly heartbroken for those who suffer. I also know it is isn't easy for them or many people to see the light at the end of the tunnel and we all must understand that the light may be far off but we have to suffer and push to get to the point where we can see a sliver of light, but we still must fight. Last week I did tell myself this hell will get better but then in the next breath I was so angry and mad it blocked out that positive thought. The mind is so hard to understand not only for us but even more for the people who study it. I have to believe if they can't understand it then how are we suppose to? Maybe we aren't. Maybe we are suppose to just love and be there for people who are suffering through bad times, not trying to make it better or fix it, just be there to listen or love them, whatever they may need at that given moment. Non-harsh judgement making, just love.

I truly believe if even a happy person says they never get down or depressed they surely cannot be telling the truth. We are all human and we fall, some of us harder than others, but we all fall none the less. Wouldn't it be grand if when we fell there would be someone there to catch us? Someone to help us through our rough times? Someone to be our personal cheerleader there by our side pushing us on telling us they don't understand but they are there if we need them? I know many people do have someone there but not in this way. I have Rich but I never told him my deep dark thoughts last week. He is a busy man and this time of year he is even more busy and stressed than the rest of the year. He is the bread winner and has to work twice as hard because I can't. Most people have two incomes coming in we have one. In my head I believe he doesn't need to come home from a eleven hour work day and hear me complain when in reality I have nothing to complain about so I keep it all in telling him I am just crabby this week. I have no one I can talk to because I don't let people in and most don't care. I am thankful I am a strong enough person to pull myself out of those times but many people aren't. I wish we could all just understand one another and wonder if that will ever happen. Something for all of us to think about.

Remember the above:

God Bless!


Friday, April 5, 2013

Rock Bottom

Finally...I think I have hit rock bottom. I have never said or even thought that before in my entire life. I don't know what it is but I have some pretty good ideas. First and foremost is decreasing these steroids. I am now down to 3 mg a day and I am at an all time low for some reason. I know you must decrease steroids slowly because when you are on them for a long period of time your adrenal glands actually stop working, so as you decrease the steroids your adrenals must "wake up" and start working again, it doesn't happen overnight.

This is what your adrenal glands do if you do not know what they are: The adrenal glands are comprised of two separate glands (the cortex and medulla) that produce hormones (chemicals messengers that regulate body functions). The medulla, or inner part of the adrenal glands, produces the hormones norepinephrine and epinephrine, which regulate the "fight or flight" response in the body, the body's reaction to stressful events. The cortex, the outer portion of the adrenal glands, produces several hormones that affect blood pressure and blood level levels, growth, as well as some sexual characteristics. Yes, I copied this paragraph so if I offend someone you can call and have me arrested. I would hate to be the police officer who came to the door because all of the above has turned me into a bitch, to put it mildly. 
Another thing they forgot to mention in the paragraph  is the fact that either being on to high a dose or tying to wean off a low dose of this evil drug is that it also has a way of trying to make you feel like you are going crazy. Forgetfulness, extreme fatigue, anger, sadness, your stomach telling you to eat everything in sight which leads to weight gain. I could go on but I get too pissed when I have to remember all the horrible things this drug can do to a body, to a person. This is why I have decided to decrease and get off steroids all together. It sure isn't easy. I hate everything right now. I'm trying not to, really, but it is hard when your body is so dependent on drugs to keep it functioning. I know it will get better and I know I will fight it to the end, bitter or otherwise.

I also need to add to the above when you are on steroids for chronic illness you are more than likely taking more that just that one drug for whatever is ailing you. I take Plauenil which is a pretty mild drug. When I first started the Plaquenil it was an easy ride I took it along with the low dose of steroids, this was back in 2006, so you have a pretty good idea how long I have been medicated, steroids included. These drugs helped to some degree but I was still suffering from symptoms so we decided to add the Methotrexate, the #2 drug from hell, this is actually a chemo drug given in low dose for some autoimmune diseases, need I say more? This was added early 2007. I started with the pill form and progressed to shots. In the past six months I decreased my shot in half because the side effects were almost too much to bear. I am way down on all meds except the Plaquenil. I feel like a walking zombie. Insert here ovarian cyst attack from hell. I had another ultrasound this past Wednesday which showed the right one is shrinking and I can go to a gynocologist if I want. The left one that was giving me the excruciating pain is gone although I am still experiencing the same back pain. I am having trouble understanding this and to tell you the truth understanding anything that has to do with the medical community. I believe when a doctor doesn't know what to do with you they refer you to one doc to another like a ping pong ball being bounced all over the place. I know I am a number to them but seriously? I am a person. It sure would be nice to be treated like one. Everything is so rehearsed too. I don't believe you can lump every person/patient into the same category, doctors must look at us a individuals not as, this is what the text book says. I am so tired of the medical community I feel I don't know where to turn anymore. Being the fool that I am, today I have to see another sleep specialist to see if she can help me with my so called insomnia. I have trouble falling asleep so I am suppose to get help learning how to fall asleep. I think it is probably like yoga learning to use your mind and letting it all go. I am going to see what happens if I am offered more drugs the doc will know where I stand. It is time I start taking charge. Thanks to hitting rock bottom!

Rock bottom isn't such a bad place to be. It makes you analize things and puts other things into perspective. It helps you devise plans you otherwise never thought you would. It helps you take control. I have come to a decision. I have decided to get off all my meds and see what happens. I figure I feel like crapola on them so what do I really have to lose off them? What's the difference? Who knows maybe after I wean off all this poison I might feel better I don't know the answer but I feel I need to shy away from the medical community where their answer to everything is a pill or a diagnosis that isn't right. Hence, me with anxiety, NOT! My frustration runs deep for the past few week/months. My anger is not good, I know how it can affect a persons health not only physically but mentally, I have to take control. I have to become my own manager in all of this instead of relying one someone who has no idea what is going on with me when they see me for a few minutes every few months. I am frustrated and pissed to the core. Rock bottom. Yes, but believe me I will get back up on that mountain and when I finally do, I am going to be a much healthier person, I hope!

God Bless!


Monday, April 1, 2013

Is Peace Really That Easy To Find?

I love this quote I just wish it wasn't so hard for all of us to do so. When I watch children I always wonder at what age the peace, self confidence, and living in the moment starts to change. Is it when we start school and become bullied or beaten up by the world, which grade? I am sure for some it happens way before that if they come from an abusive home life. The world and life sure can be a brutal place. I believe we are all children in some way still trying to find our way no matter our age. After all every moment, at any age we are at, no matter the situation it is all new, most of it anyways. We move along doing the best we can to survive this thing we call life.

We had a busy weekend and for most people it would probably been considered a typical weekend but for me it was busy. I did well, as well as could be expected. I pushed myself, put on the face, and made it through. This after a few very rough weeks with the last being emotionally draining. I cannot ever remember being so down and out, ever. I think the cyst issue caught up with me and the reality that it really is going to be one thing after another after another after another for the rest of my life. The thought of all of that is almost to hard to bare. I usually don't let my family know when I am down or feeling like giving up because then all they do is worry but last night as we rode home from Rich's mom's house I lost it. We were driving west and the sunset was almost to the point where it was gone but there was a beautiful orange band tucked under the dark sky and it was breathtaking. I asked Rich, "Don't you wish that the car would just drive right up into that and we were in heaven?" Of course he said, "That isn't our decision to make." At this point I just babbled about not having anymore of this to have to deal with. The pain of the cyst had been much better the day before so I thought this was the beginning of the end and then when I woke up yesterday only to have pain again it really slammed me down. We both looked at the sunset and I began to cry, not out of the physical pain but the emotional pain of wondering if I will really be able to ever find any real peace in all of this. I hate talking to Rich about this side of chronic illness because then he worries to much but I have to let it out to someone once in a while. I am only human. I told him this was a nice weekend but I had no idea what it was going to do to me tomorrow, which is today, when I wake up. Of course I woke up with a headache and downed the excedrin migraine in hopes of it not turning into a full blown migraine, so far okay it just stayed at the regular headache level, happy for that. I am tired to the bone but it was all worth it because I was able to see some of the family yesterday and celebrate the reason someday all this will go away and give me the true peace I seek.

The cyst saga continues. I am beginning to make some connections to this pain. I have had it for a very long time as I begin to use the hind sight is 20/20 perspective. I have had pain in my left hip for over at least five years but I always thought it was my hip. The last time I went to my Rheumatologist she thought it was bursitis and gave me a steroid injection, but I am becoming more convinced some of this hip pain may be due to this cyst and I wonder how long it has actually been there. You see, when I have a physical I do not have pap smears anymore because of the hysterectomy I had years ago. How the heck to they know what is going on down there if they never check it out? I don't know if this is true but still wondering if this may have been there all these years and I suffered from the hip pain for nothing. I have another ultrasound on Wednesday so we will see. If the cyst is gone then we know the hip pain is bursitis or some other joint or muscle issue. Either way it is frustrating and it is getting old so when I read the quote above and I thought about it for a bit I knew needed to come to my blog today, not so much for everyone else but for me to make some sense out of all of this. The quote also made me realize I'm not in control. I believe that quote was put on facebook for a reason. If it were for me then so be it but I am sure many others can use it also, chronic illness or no chronic illness. I myself have to remember each moment has something good in it whether it has pain or some sort of other suffering. Instead of allowing myself to ask why I have to live like this and how unfair it is I must remember the peace. The moments in my life that are peaceful and good. The moment Rich grabbed my hand in the car and told me he didn't understand it either. He didn't try to tell me to get over it he just held my hand and brought me some of that peace. In that moment I said, "I know I have nothing to complain about because there are so many people worse off than I shouldn't complain" He just listened and by the time we got home the tears were gone and I was glad the car didn't drive into the sunset. I hope today can bring us all the peace we are searching for!

God Bless!