Monday, October 31, 2011

Glass Half Full

I drove down to the store in Lancaster 2 weeks ago to pick up some packing tape for the boxes we were packing. I remember feeling stressed and sad that we were losing the house due to the fact that I've been sick and unable to work.
As I was leaving the parking lot I saw a woman standing there holding a sign that said, "Family in need please help." I am a compassionate person but I've seen people holding signs a million times and I have never felt compelled to stop. For some reason I couldn't get this woman out of my head. I went back later and gave her 2 bags of food. There has been debate around town whether this woman was a drug addict or just plain lazy, but something compelled me to give her food. No matter what anyone says, I feel I did the right thing because that's what God put on my heart to do.
I think about how upset I've been about losing my house and after seeing her I just feel stupid. I am blessed enough to have family that have taken us in. My mother and Father in law took us into their home without thinking twice. It makes me wonder where I would be if I didn't have family as good as them, Would I be forced to stand on the corner with a sign in order to survive? How can I not pay forward when so many people have helped me? How many times would I have to endure people driving by screaming for me to get a job because I "Don't Look Sick." Would I be strong enough to swallow my pride and do that.
As I adjust to living with my in laws, I can't help but think of that woman, and feel so blessed. I am lucky to have people around me who will always be there for me. Think about your life and ask yourself if you have that same blessing. If not I strongly urge you re-evaluate who is in your life.
I looked at losing my house as such a loss. I felt like such a loser. Looking at it now, even when I was healthy I was struggling to pay for that house and we didn't even particularly want to live there. Maybe this is God giving me an opportunity to have a fresh start and truly be the person that I want to be.

Tuesday, October 11, 2011

I have Lupus and you're just a loser

So as many of you know, when you live the life that we sick people do, television become a big part of your life. There's only so much time you can spend reading,playing on the internet, or your phone. I find myself becoming very caught up in people's lives and feeling what they are feeling. I think being sick has really heightened how I relate to people in general, but especially people who are having personal or life struggles.
Tonight was the premiere of a show called I Used To Be Fat on MTV. I felt really great about this show, due to the fact that America's statistics for obesity in adults and teens is ridiculous. For those of you who have never seen it, it is a show that follows individual teens who want to lose weight and live a healthier lifestyle before they go to college. It's a show that I used to love. I felt the teens personal triumph when they achieved their goals and were able to do things in life that they were never able to do before.
Being sick the last year has greatly affected the way I feel about watching this show. I couldn't believe that a show that used to give me so much hope for people could make me feel so depressed.
At the beginning of the show I found myself becoming more and more angry with this teen boy, with every bite of a greasy hamburger, or every chocolate chip pancake he ate. I'm the first one to say that you have to indulge sometimes, but the quantity of food this kid ate was seriously crazy.
Not only did his food choices and portions bother me, but the thing that really made me furious, was watching this kid sit on the couch and choose not to do any physical activity whatsoever.
It was so great seeing him do the work and get the weight off. He worked very hard and made his life better. He saw something that made him un happy and he changed it. That's so wonderful!
I know this sounds a little selfish, but I want to know where the trainer is that will show up and wave his magic wand and give me the health to excercise like I did before I became a cave creature. I remember a time when I would leave in the morning, work 12 hours, go play softball or go to a dance class after, and still be able to play with my dogs in the yard when I got home. When does the magic guy show up to put me back to being active and 25lbs lighter?
It just makes me sad to see teen kids that are completely healthy wasting it. I wish I could go run on a treadmill and sweat until my muscles scream for me to stop. If I try to walk up 10 stairs my whole body screams for me to stop. Most of the time my body won't even allow me to get up 2 before it completely gives up. I just want to be normal and I see people wasting their lives.
The show Intervention absolutely infurates me! I know drug addiction is a disease and it's a horrible thing to have to recover from. I've been around enough people who are addicted or have been addicted to drugs to know this. Now this next part may make some people mad, but so be it! The part that I don't get is that at some point they made the decision to abuse a drug and essentially poison themselves. I've seen people that I'm close to waste years of their life caught up in a substance that is killing their healthy body. At the point I am in my life right now, I can't even fathom someone intentionally harming their body.
I have to struggle and work hard every day just to do the things that annoy people. I could easily ask someone else to do it for me, but I WANT to be normal. I want to do the boring things that I used to hate because when EVERYTHING that you know is totally taken from you and there's nothing you can do, the things that used to annoy you suddenly seem so stupid. Why did I waste so much time being miserable doing certain activities, that I pray that I might be able to do again.
I take it extremely personally, when people waste their lives damaging themselves. I fight every day trying to repair the damage that my Lupus causes my body to do to itself. How can you waste something so precious? I don't understand it and I probably never will again. So if you are a healthy person who is reading this, please live every day to it's fullest and try to see things from our point of view, and I guarantee you will feel differently about things. Stop poisoning your body! It doesn't matter if you're doing it with drugs, alcohol, food or whatever. Your health is a gift and please don't waste it. Think of it as doing those of us who can't do what you can, a favor!

Wednesday, August 31, 2011

You're not a factor

My thoughts are racing my heart is heavy,
Is it a mistake to bring up the pain,
Its taken me too long to build this emotional levy,
If I break it I might go insane,
For so many years I've just pushed it away,
It was far to painful to think about,
But it is in my head every day,
I can no longer push it out,
You were the one who should protect me from those like you,
You filled me with hate and made me someone I'm not,
It has ruled my life and I know what I have to do,
I've reach out after 20 years for something I've sought,
You planted an emotional bomb in me,
You left it for someone else to deal with,
You didn't take the time to even try to see,
The effects and all the times that I've tripped,
I always wear a smile I use as a mask,
Trying to be happy even though I'm hurt,
I feel like true happiness is too much to ask,
Tried to push it aside but it didn't work,
I feel so betrayed, robbed and sad,
You were supposed to be the one I could trust,
You don't know the effect your mistake has had,
I feel I don't deserve happiness, but God must,
You made it impossible for me to trust men,
You betrayed me in every way,
Although you don't deserve it, I can forgive
My hate will end after today,
You took everything from me but I'm proud that I can still give,
Another man stepped up to the job you should've wanted to have
Although you now say you sorry and live with regret,
The man who doesn't even share my DNA will always be my dad,
I am a big enough person to forgive but I will  never forget,
How you slammed me to the ground and didn't even care,
You didn't even have the courage to stay and see the impact of the fall,
When I picked my head up I realized I still had hope and love to spare,
I had to be the strong one because you couldn't make the call,
I'm proud of the person I am with no help from you,
Looking back it was better that you weren't around,
I still pray you are happy and just have a different view,
Just know that I'll always continue to pick myself up off the ground!

15 years of Hate

Ok so so I'm going out on a limb and telling people my story so I figured I need to tell  it all. I am a victim of multiple types of childhood abuse. It felt like such a shameful thing to me to be able to say or even type those words. I've realized lately that's exactly the problem, and that's why so many people get away with it. It's hard for me to talk about it now, even though it was about 15 years ago.
People who have not been through this kind of thing don't realize the ways that something like this can effect you. It can literally ruin your life if you let it. I decided I wouldn't be one of those people who lets it. I would never want to be the kind of person who hates anyone, so I did something I never thought I would do. I confronted this person who I've hated for years and let him know that I forgive him, even though I'll never forget.
I am in no way bragging about it. I am however sharing this because by doing this I took back the control! I think one of the biggest things that's taken away from us when this happens as a child is control and your voice. When we are children we are supposed to do what adults tell us. We don't realize as small children how terribly wrong and damaging some adults are.
Ok I'm not going to drag this out I just wanted to leave anyone who may have experienced what I did, with this one thought. Forgiveness is not to help the person who hurt you, it is necessary for you to be able to truly let what happened to you go!

Monday, June 6, 2011

Hopeless

I try my hardest to remain positive in any situation. Lately I've really been struggling. I don't know how much a person is able to take. I'm not even just talking about myself. When I have hopeless feelings I try to write and usually I can get something positive out of it. Today is not really one of those days.

I'm not at all happy with the way my life is going,
I keep getting knocked down by the strong wind that's blowing,
It takes all of my strength to get up off the ground,
When I get to my feet I'm wobbly and fall back down,
I'm running out of the strength that's moving me along,
I smile and say I'm ok but everything is wrong,
I don't know the cause or the reason for all the pain I've felt,
I don't understand why this is the hand I was dealt,
What did I do or what did I say,
To deserve this life that I'm living every day,
I'm holding on to anything to stop the spinning,
This fight is too much for me and I'll never be winning,
I'm afraid I can't take it, it's too much to bear,
The sickness, the sadness, the pills and loss of hair,
I see people who are "old" and have had a long life,
They run circles around me and I'm supposed to be in my "prime",
Within a year my body has become my primary fear,
For most people that takes a lifetime but for me it took a year,
I'm afraid I won't make it because I'm not that strong,
The spark I've struggled to hang on to is totally gone,
I can't get it back and it makes me so sad,
It's impossible to be your happy self when things are so bad,
I'm grateful for friends,family and all the positive things,
Today it's just not enough to trump all my pain,
I shouldn't complain, for so many are worse than me,
They are just so much stronger that I ever could be,
My mind wants desperately to believe one day again I'll be me,
My body keeps telling me that's never going to be,
I don't want to give up and I continue to pray,
Lately I just never know if I'm strong enough to make it through today.

Friday, June 3, 2011

Dogs VS Docs

People with chronic illnesses are no strangers to disappointment. It can be something as small as being discouraged with your appearance, because of weight gain or even just a little bit of redness on your face that used to not be there. We are also face with much bigger disappointments. Things that people normally don't have to face. Losing a job, house, independence, or even an organ. I have personally faced many of the things I just listed, but the most disappointing thing, for me has been doctors.
I always placed doctors on a pedestal, in a way so maybe its kind of my own fault. Many children dream of becoming a doctor when they grow up, because they want to help sick people. The majority of the doctors that I have seen have lost that somewhere along the way. I have seen a total of 8 different doctors within the last 9 months and they still have yet to find out exactly what is wrong with me.
I am lucky in a way because, I have a great primary doctor and a great rheumatologist that are actually located in the town I live in. These two doctors are the kind that still have that genuine want to help their patients be healthy and live a better life. Dr. Stephanie Ott of Gwella Rheumatology and Dr. Laura Morgan of Buckeye family health are two of the exceptions to the horrible doctor rule. Most places if you call them because you are having a problem, they may ask you to schedule and appointment or call you in a prescription and then they forget about you and wait for you to call back and tell them it didn't work, or wait until you have a problem again. These two doctors will actually call me periodically to check up and see how I'm doing and if I need anything. To most people this may seem like a silly thing to be so impressed with, but to those of us who see our doctors, more times a year than most of our cousins, this is a huge thing.
Every other doctor that I've seen in town, have taken me on for a while to get money and then stepped away and said I don't know what to do to help you. I am not under any delusion every doctor knows how to fix every problem, so that is not what disappoints me. The thing that disappoints me is that they never really set out to help me in the first place and they could never give me another alternative of something or someone who could help. So, with the exception of my rheumatoligist and my primary, 4 doctors here in town just basically said, "Well, I did all the stuff that normally works and I don't know what to tell you." So when I would ask where I should go or what I should do they would literally say, "I don't know." Being so sick that you cannot function like a normal person, that is a devastating statement.
So when this happened that last time in town I decided to do some research. I am fortunate because the number 2 rated hospital in the US. (I'm not sure what the number 1 is lol) Is actually located in my state. So I took it upon myself to try to get in with them. It is true, in my opinion, that the Cleveland Clinic is one of the best hospitals in the country. They have much more knowledge and technology that is not available at other places. So then begun the monthly 3 hour trips to be seen. I was seeing a GI specialist, who I will not name, and a Pain Management doctor by the name of Beth Minzter.
The GI doctor has been my biggest appointment to date and here's why. I saw the GI doctor several times and he began doing some testing. It is so frustrating having to answer the same questions over and over, and tell them your number on the pain scale, but I will do whatever I can to get better. I have become extra sensitive to doctors and honestly, kind of downright discriminative. The doctor was asking the "routine" questions on my second appointment and he asked me, "Does this condition effect your every day activities or your quality of life?" I pretty much lost it. I'm pretty sure my head spun completely around and I puked projectile green slime because I was so annoyed with that question I just lost my cool. My response was, "Of course it does! I drove 3 hours to the doctor today, as well as the fact that I'm a totally non functional person!" I'm normally a very calm person, so this outburst is extremely rare for me. I thought my friend Ash's eyes were going to pop out. lol After he got over the shock his next statement to me was, " I can't imagine how frustrating and upsetting it must be to be in your situation. I can't guarantee that I can make you better tomorrow, or that I can make you better at all. What I can promise is that I will do EVERYTHING in my power to try to find out what's wrong and try to get it fixed. If I can't, I will make sure that I can get you to someone who will, and I will follow up, because we just need to get you better. This has gone on long enough." I instantly started crying tears of relief. FINALLY someone understand's how I feel and actually cares enough to truly try to help. I finally had found a doctor who I could trust. So I remained under his care and he started having me see the pain management department for testing.
My last appointment with this doctor was on May 19th. I went into the office after having a test done with pain management.The test I had done was supposed to be a breakthrough in finding out exactly what was causing all of my pain. So I had an appointment with pain management on the same date after the appointment with the GI doctor. So he came in and asked me some questions about how the test went and then began to look at the notes from the test. He looked at the notes without speaking for a long time and then turned to me and said,"Well I don't really know what to make of these test results right now, so I need to talk to Pain Management and see what their suggestions are. Since they administered the test they will be able to tell use which direction to go next." I instantly started to tear up because it was just like déjà vu. He was doing the same thing to me that all the other doctors had. He was done and didn't know what else to do, I just knew it. He noticed that I started to tear up and said," There's nothing to worry about, I just need to talk to them first and then I'll call you and let you know what's going on." So I felt reassured. He said he would call the pain management doctor as soon as possible so they could discuss a plan.
It took me about 20 minutes from the time I left there until the time I saw Dr. Minzter at the pain management clinic. Dr. Minzter came in and told me that she had just talked to the GI. I was relieved because that GI doctor had followed through on what he said he would do. Dr. Minzter is a very blunt and straight to the point women. I love that about her. She doesn't just tell you what you want to hear she tells it like it is and I LOVE that! So she comes in and looks at me and says, "I don't know why he didn't talk to you himself but he said he's done." I just started bawling. She decided to go ahead and try a different thing in that visit and kept apologizing for the GI. I was so betrayed by him and thought it was extremely unprofessional of him not to tell me himself.
Dr. Minzter has turned out to be one of the exceptions to the rule. She is caring and tells it straight, and I've never seen another doc have such a reaction to the pain scale. If you come in with a 7 and it goes down to a 4 or below her face lights up. You can really tell that she gets a great amount of pleasure in helping people.
I just wanted to share my story a little because it's so easy to become discouraged with the doctors that we have to see. You often feel as if the 5 in this story are all that are out there. I have been fortunate enough to find 3 that still have the initial childhood response of really wanting to be a doctor to help others. That's how it should be. I don't like the fact that my life is hard and some days I'm so sick I can barely lift my head, when I finally drag myself to the doctor all they see when I walk in is a big dollar sign in a hospital gown.

Tuesday, May 24, 2011

There is hope for teenagers!

I've begun to realize that I am officially an adult. Instead of being the one who people look at and think, "wow I just don't get kids today.", I am the one saying those words. I see the kids now, with their Bieber hair cuts and skinny jeans and wonder to myself, how they will ever grow up to be legitimate men. I stand behind girls in the mall and wonder why they giggle for 15 minutes, when the male cashier looks in their direction. I wonder why exactly they feel the need to sing Miley Cyrus at the top of their lungs while standing in line a FYE to buy the latest Twilight DVD. Apparently I've forgotten what it's like to put on your best out fit and shoes, and spend 4 hours styling my hair to go sit in a dark theater with, "the boy from school who is soooooo cute!"
I see shows on TV pretty much daily that show how messed up teenagers lives really are now. Of course there's the teen mom show, which let's face it teenagers have been getting pregnant for a long time now, they just now made a show about it. (No I do not think the show glorifies teen pregnancy or makes it a trend to get pregnant, but that's a whole other soap box!) I also see talk shows and shows about schools that show out of control teens. Teens have so much pressure to be thin, or pretty, drugs, drinking, violence. It's a lot of pressure that I don't think they are ready to handle and I think this causes many of them to buckle under the pressure. They give in to drugs or being disrespectful to others or bullying others.
I am proud to say that I have a 14 year old niece who is for sure the exception to this rule! Zoe is kinda like my mini me. If I didn't know better I would swear she was my child! She is very active in school. She is involved in volleyball, basketball, track,choir, and softball and she stands out in all of those activities, while still maintaining good grades! It's amazing. I honestly cannot express how proud I am of her. For one for doing all the things I just mentioned and also for maintaing a snarky witty attitude the whole way.
She has an older sister, who is 18 and autistic, and she helps her with school work whenever she needs it. It's amazing how big her heart is! She once told me, "I really wish you felt better Aunt Rose. You know if you ever need me I will be right there. Even if I have to run to your house I will, just let me know." How many teenagers do you know who would say something like that? Even more than that how many teenagers do you know that would say that and actually mean it? She is the only one I know of!
Every teenager from the age of about 13 on looks forward to their all important 16th birthday. With turning 16 comes the prospect of driving and more freedom. Most teenagers look forward to this time so they can have their own freedom and hang out with their friends. They begin to dream and work toward getting the car they want and make plans of what they will do with it. Zoe is not different, but the plans she's making are. She wants to get and SUV so that she will have plenty of room so she can help pick up her little brothers and her older sister, who is unable to drive due to being Autistic.
 She did something recently that just really blew my mind. She went to her first real dance. The dance was in May and as some of you know May is Lupus Awareness Month. She wore a purple dress and her boyfriend wore a tie with purple in it. I was so proud and of course she looked beautiful. It's funny how something like that just makes your heart swell.
So when I watch these shows where the kids are calling their parents names and fighting and getting in trouble, it makes me sad. I often think that there is no hope for teenagers. It's sad that many times that's all we see are the kids who are in trouble or doing bad things. That's what compelled me to write this blog. I'm so proud to have a niece who is the exception to the rule, of teenagers are terrible. I would love to see a talk show that showcases, kids like her, who are beautiful inside and out!



Tuesday, May 17, 2011

"Lucky" Ode to Mo

Sometimes it's hard for me to keep moving forward,
I know that I'm lucky to have someone to look toward,
I try to keep going, but often I fall,
I'm lucky because I always have someone to call,
I tend to be hardened and not quick to trust,
I'm lucky because in my life, she has become a must,
She's seen more pain and heartache than any one person should endure,
Somehow she continues to think of others more,
I'm amazed at her heart, strength and courage,
I'm blessed because she keeps me from being discouraged,
I'm lucky because since the day she came into my life,
She saved me from myself and all my inner strife,
It's a blessing to have a friend who helps to keep your dreams,
Especially from a friend who's face you've never really seen,
I've been abandoned by friends and even family,
I'm lucky because no matter what she's always right there for me,
I pray for the day, when again she will dance,
I treasure that I'm head over heel, in our "homance",
My hero doesn't wear a cape or have the ability to fly,
She simply sits back and listens whenever I need to cry,
I wish I could stop the pain that causes all her tears,
She's always been beside me when I've had to face my fears,
I wish I could take your pain from you and throw it all away,
I would take it on myself if it meant you would have a good day,
She never makes fun of the fact that I'm slightly burly,
She just fights it off with pink bandanas and everything else that's girly,
It says a lot about someone, who's been faced with things most can't fathom,
To be selfish or not think of others is something she cannot imagine,
Whenever I need strength she seems to always have some to spare,
A friendship like the one she's given me is just beyond compare,
To wrap it all up into one simple end,
I thank God every day that I'm lucky enough to be able to call her my friend!

Wednesday, April 20, 2011

Just one of those days..

As many of you know, living with a chronic illness is an evil roller coaster ride that you can never get off! I never really thought much about how hard it would really be. If you had asked me 10 years ago if there would ever be a time, where I would be limited with what I can do I would have laughed you right in your face and given you a very "colorful" answer. I have always been a typical go go go I'll sleep when I'm dead type of person. I would literally "spring" out of bed in the morning and do a whole day of work and then do a million activities after. There were very few days when I even sat down before it was time to go to bed.
Many of you regularly read my blog so I'm not gonna bore you with what you already know, but I've been having a rough go of it lately. I didn't realize what an emotional toll being sick takes on you. I feel like a totally different person now than I did 8 months ago, and I find many of us are going through this same thing.
Well my friends, I had "one of those days" today.
It all started at 3AM when the tornado sirens started going off and the wind sounded as if it would rip the side of my house off. A normal person's first thought is, "Wow I better get to the basement." Not this chick. I sat by the window and watched what was going on very closely because I knew that going down the stairs to get to the basement would hurt, because my knees are swollen and my stomach hurts so bad.
So I finally got to sleep at about 5AM. I was awakened at 9:30 by the husband walking in the door from work. (he's not supposed to get home until 3PM or so) So again, I was woke up. He got sent home early without pay because there was a power outage and the power never came back on. Normally this would be kind of a good thing, but given the fact that I'm unable to work right now, not so much.
So then, I had a rheumatologist appointment today. (enter scary movie sound effects here) So I go in there and find out that I have joint damage that I wasn't aware of before and I have to go back on the methotrexate shot. I know a couple of people who are on it as well, but for some reason my body hates it. So now I must inject myself with liquid fire that makes me feel like a puddle for 2 days after I take it.
I would never wish my pain on anyone, but the next person who gives me the "but you don't look sick" comment, I am going to punch them in the head and the stomach, then smack them in the face, then kick them in the knee. While they are down I am going to tie them down and say,"now, get up and go on with your day." When they say they don't think they can I am going to say, "Why not? You don't look sick."

Thursday, April 14, 2011

YAY ME I WIN!!!


Ok so I was officially awarded the honest scrap award! Messy Happiness aka Mo Mo nominated me! I'm so proud. I haven't won many things in my life so let me have this moment!!! This is my acceptance speech!

I would like to thank everyone that has pushed me to start/ promote my blog! Especially Falanya at Live Thankfully and Monique at Messy Happiness. You guys are the greatest! 
I would also like to thank God. He is my creator and the one who keeps me weird mind somewhat functional. I also want to thank Him because he gave me the weird sense of humor and smart mouth that keeps people somewhat insterested in what I do! Plus I'm pretty sure that if I don't thank God Kanye is gonna run up here and steal my award. I love Taylor Swift and everything, but I'm not her I will drop kick that fool in a heart beat. He will be singing through the wire again!
So thanks so much everyone for all your support and I hope you continue to follow my blog and I hope it makes you smile or angry or feel some kind of strong emotion because that's what life is! 
So I'm gonna end with 10 random facts about me because I think that's what Mo Mo did, so basically I'm just gonna steal her idea! 
1) I am deathly afraid of birds. Everyone finds this strange but it's the whole squaking, swooping thing yeah it freaks me out!
2) I once kicked a boyfriend out of my car and made him walk about 15 miles to get home because he was drunk and called me a whore.
3) My husband is a red haired pale faced ginger, I love him to death and he hates it when I call him Raggedy Andy. Seriously, DON'T TRY IT.
4) I love music and I'm kinda obsessed with Taylor Swift even though she's almost like 10 years younger than me.
5) I really want one of those sock monkey taboggans but I can't get one cause my 14 year old niece has one, and I'm NOT gonna be the creepy Aunt who tries to dress like her 14 year old niece! That's just not cute!
6) I want to start a personal crusade against people who have mullets! COME ON, short or long you can't have both! It's not business in the front, party in the back! It's just a disaster all over!
7) Sometimes I have really random evil thoughts. I do not act on them but I do burst out laughing randomly. (ex. I will see someone sitting on a railing on a porch and think to myself how funny it would be to push them over. Again I DO NOT ACT ON THESE THOUGHTS. I just laugh)
8) I am a 80s hairband front man in my car. I love the music and I'm pretty sure I was Sebastian Bach in a past life!
9) My best friend Ashley is the funniest person I know. She is the human version of Agnes from despicable me.
10)Every time I hear someone say "That's what's up" 50 times in a ten minute conversation, it makes me so angry I want to punch myself in the face repeatedly! 

Thanks for listening and thanks Mo for the Scrap award! 

Back by popular demand!

Sorry about the fact that I've been kinda awol from my blog! I haven't been having a rough go of it lately and I'm not fortunate enough to have a laptop.
I've had a pretty bad day today even, but I decided to write and try to get my feelings out. Many people don't realize how much emotional pain comes along with physical illness. I used to always be a "glass half full" kind of gal. I still try to do this for the most part, even though it's annoying to some people at times. I've always felt like feeling sorry for myself or dwelling on the negative only makes things worse. Then came lupus....
I didn't realize how, something I've practiced my whole life, would become so difficult to me. Right now, I'm sicker than I have ever been in my life. The last 7 months of my life have been spent in a bed or a doctors office. Now, anyone with a chronic illness will agree, that a doctors visit does NOT qualify as a recreational outing. Right now, that's all I can do though. I was always a 100 mile an hour, "I'll sleep when I'm dead" kind of person. So this has been very difficult for me to adjust to.
I feel like my own body has yanked the preverbial rug out from under me and there's nothing I can do about it. So with that, I'm finding that the glass that I once saw as half full is either totally empty. Actually most days the glass is shattered on the floor.
I'm so thankful that I have friends and family to lean on. I'm gonna steal from my friend Monique in saying, there has been more than 50 times lately where friends and family have lent me their strength. I keep questioning myself. I cry almost every day and I try to hide it. I wonder through the tears if I'm strong enough to go on. Somehow I find the strength to keep pushing forward. It took me a while to figure out how, but it's all the people in my life and even just the people who stumble upon or follow my blog. You all give me strength every day. I just want to say thank you to all of you right now! THANK YOU!
Mo Mo, Fo Fo, Jo Jo and Po Po. (they all know who they are) You guys especially always give me strength and I'm so thankful. Thank you for always having a kind word, or just an "I understand" (because I know you truly do) What we go through is something no healthy person can get and I'm thankful I have you guys to "get" me!
You can find Jo Jo Mo Mo Fo Fo and Po Po on twitter

@lupusman
@falanya
@messyhappiness
@purplegimp

Friday, March 4, 2011

Tied Together with a smile

Anyone who knows me, knows that I am a huge Taylor Swift fan! One of her older songs came on recently and I realized how much it explained, some of the feelings I have while battling with being sick. I tend to be a bit of a pessimist about myself and it gets way worse when I'm sick. Not many people know this. Even when I am in so much pain I can hardly stand it, I smile a lot to make everyone else think I'm fine. I've been doing this for years now. I heard this song and it reminded me of myself. Even though the song is about love, it always evokes strong emotions in me. Hope you enjoy!

Seems the only one who doesn't see your beauty
Is the face in the mirror looking back at you
You walk around here thinking you're not pretty
But that's not true, cause I know you

Hold on baby you're losing it
The water's high you're jumping in to it 
And letting go and no one knows
That you cry but you don't tell anyone
That you might not be the golden one
And you're tied together with a smile but you're coming undone


Guess its true that love is all you wanted
Cause you're giving it away like it's extra change
Hoping it will end up in his pocket 
But he leaves you out like a penny in the rain
Oh cause it's not his price to pay
It's not his price to pay

Hold on baby you're losing it
The water's high you're jumping in to it 
And letting go and no one knows
That you cry but you don't tell anyone
That you might not be the golden one
And you're tied together with a smile but you're coming undone

oh oh oh oh
Hold on baby you're losing it
The water's high you're jumping in to it 
And letting go and no one knows
That you cry but you don't tell anyone
That you might not be the golden one
And you're tied together with a smile but you're coming undone


oh oh oh oh
You're tied together with a smile but you're coming undone

-Taylor Swift


The chorus especially speaks to me. I have come "undone" and can no longer always be "tied together with a smile". I still try to do it but nobody is buying it anymore. I've jumped into the water and am hoping that I don't drown. I know that if I just keep swimming I can make it! 

Sunday, February 20, 2011

MY Vicious In Laws

Their have been countless jokes and stories written about people and their troubles with their in laws. It has been recorded in countless songs. Most people I know dread going to their in laws houses or even spending a few minutes with them. I for one, got lucky enough not to have to be one of those people. I will never forget the feeling of complete terror on the 20 minute drive to his mom's house to meet them for the first time. I was almost nauseous because I was so nervous. After the first 10 minutes everything changed! My husband is constantly pulling me away from his mom's house or getting jokingly offended because his sister comes over to the house and walks right past him to say hello to me! lol I just wanted to write this to make you all jealous of my situation and also as kind of a tribute to all of them.
My husbands brother Taylor, is one of those people who walks into a room and commands attention! He is one of the funniest people that I know. I admire the fact that he can talk to anyone. No matter what age,race, religion or sex you are, you just want to be his friend as soon as you meet him! It's really strange! He is one of the most fun loving people I know as well. He is still quite young so of course it has gotten him in trouble from time to time. I find myself incredibly protective of him as if he is truly my own little brother. I catch myself, every time I talk to him, ending the conversation with, "Have fun but make sure you are also being careful!" I have officially become the protective big sister! lol
His sister Tiffanie is also someone that you can't help but notice when she walks into a room. She is physically one of the most beautiful people ever. The best part about that is that she really doesn't give a shit! I know that sounds kind of harsh to say, but what I mean is she is one of the most beautiful people inside as well. Most of the time you see women who are beautiful on the outside and as soon as they open their mouth to start talking to you, you would rather punch yourself in the face repeatedly than to continue on with the conversation. She is smart and caring and she can laugh and joke with me about just about anything! She is also one of those people who, as soon as you meet her you really want to be her friend!
My husband gets most of his demeanor from his Dad.  I have never met a more calm person in my life. lol When you around him it's just kind of relaxing. He doesn't really get too excited about anything and that is one of the things I value most about my husband. I worry all the time and he snaps me out of it.
His step dad Chuck is one of the most interesting people to talk to. He could hold a conversation with anyone about anything. There is truly never a dull moment around him. In a lot of ways, in my opinion, he has been a huge influence in my husbands life. He has taught him a lot of things about being self sufficient and is definitely kind of a ying to Koy's moms yang. In a lot of ways he is like me, how Koy is like his mother. I tend to talk all the time and he tells me to shut up. Much is the same with Chuck and Koy's mother. lol I can never keep a straight face when someone says something and he spits out, "Gee Fer Socks" (or whatever the saying is)
Koy's mother Kathie has been an extremely influential person in my life. She is an incredibly strong woman who goes right after what she wants. Most women like that tend to be cold and off putting but I don't know of ANYONE who rivals the heart of gold that is inside this woman. I can remember the feeling of sheer terror 3 years ago when we were on our way to tell her that we were engaged. I have loved Kathie since the first time I met her, but I was engaged to be married to her only biological son. Most women tend to have some bitterness in that situation. I was freaking out the whole drive there. We walked into the door and on my way to the bathroom, I tripped over her dog and fell in the hallway. So right then I thought to myself, ok this can't be a good sign. When we told her she actually cried tears of joy. She welcomed me into the family with open arms and has treated me just like one of her kids ever since. She has done everything from, sitting in the hospital with me to just listening to me cry if I had a bad day. I have never felt so close to someone who is not part of my biological family. I could sit and talk to her for hours and she always knows what to say.
I don't really understand how I got so lucky to be blessed to have all these people in my life. Without, even talking about my husband, I guess you can see why he was the one I chose to marry. I love all of them so much, just as if they were my own family, because now they are. Koy has a little piece of all of these people in him. It makes him the perfect person for me. I have especially, lately, realized that you have to hold onto what you can, when all else seems to be failing. I thank God every day that I have such strong wonderful people to hold on to!

So Helpless!

I am no stranger to the self pity party. These last few months have been very hard for me. I have always been able to push through my flare ups. I can no longer push through whatever this is that's going on now. I am so sick and in so much pain and nothing I seem to do helps. I feel so helpless.
I was always going 100 miles an hour. I worked 12 hours a day and would come home cook dinner, do laundry, whatever. The last 6 months have been tough for me because I am relying on so many other people to help me. I am so thankful that so many people are there for me, but it's difficult not to feel guilty for them going way above and beyond what they need to do to help you. I went from 100 miles an hour in my mustang car to sitting in a Chevette that's wheels have been cemented into the ground! That's a hard pill to swallow.
My family and friends keep telling me that they want to do whatever they can to help because they feel so helpless that they can't make me feel better. They have done everything from, cleaning my house, grocery shopping, and driving me all over Ohio! I keep hearing the statement, "You are far too good a person to have to go through all this." That's such a great thing to be called a good person, but I don't really see myself that way. They keep saying over and over I feel so helpless I wish I could do something to make you feel better. I know they want to help but I always think to myself how could they possibly feel as helpless as I do?
Well now I know. In the past few days I have had a good friend involved in a motorcycle accident and another good friend who is very very sick. It is so frustrating not being able to fix it. I want to make them better and I can't do anything. Now I understand the feeling that others around me have. You just sit and worry constantly and try to figure out what to do. You always come up with nothing that's what's really bad.
At least I have been taught to let people do a little bit for me. If it helps to eliminate that helpless feeling, that I've been having, I'm glad to be able to hand over the reigns. Although it's hard not to be able to do everything myself, I wish I was healthy enough to go visit Tim in the hospital, or go clean Monique's house for her. It's so difficult to see someone you care about struggling that way. So yes I'm gonna say it, "They are too nice of people to be going through all this pain." I am an honest believer that some people could not handle going through that kind of pain though. God puts the strength inside us to be able to rise up!

Wednesday, February 9, 2011

Husband Handbook!

So my friend Monique and I were talking earlier and it's weird how much we are like! We have the same sense of humor and even try to say things at the same time! The strangest part is that our husbands act the same too. We both have wonderful husbands who take really good care of us. They are also both relatively shy and have a lot of the same habits and "flaws." We were discussing some of these things and decided to compile a list we name the "husband handbook". I am curious to see how many of your significant others share the same kinds of habits or traits. Here's what we have so far, feel free to comment or add! Keep in mind these rules are set up like a "manual" for the husband to read.

1. You are not allowed to whine about a runny nose in our presence, unless you are also dealing with a spleen with a ninja complex!
2. If you are hurt or sick you probably need a medical opinion of someone more qualified than your wife. Call the doctor and refer to #5
3. You must be sick enough for you wife to feel sorry for you in order to avoid being addressed as "little girl".
4. We will NOT smell, touch, rub or pick off anything that has attached itself to your body!
5. I promise that you will not blow up or die from placing a phone call. ie. doctor pizza, etc.
6. If the wife is on the phone, she will talk to you when her call is complete. There is no need to try to start a conversation while she is talking to someone else. Please be respectful to the person on the line and allow them to have "their" time with your wife.
7. Everyone around you knows that you are smarter than the household pets. You don't have to humiliate them in front of people to prove this fact!
8. If you choose to watch shows that lower your IQ points, you are NOT permitted to call Billy The Exterminator dumb!
9. Although most household chores get done without your help, your clothes really DON'T pick themselves up off the floor and walk to the laundry to wash themselves!
10. Your wife was not born knowing how to cook. The same process that taught her could also teach you.
11. Your wife knows just as little about filling out that form as you do. She does not automatically know how to complete paperwork that you do not. Ex. They do award rebates to men also, it's not just a chick restricted perk.
12. The vacuum cleaner can be operated by a man. There is a manual that will even show you how to do it. It's a new word to men called INSTRUCTIONS!
13. Your wife knows how to change a tire and make your toes curl. She can't do both. Which one will you choose?
14. Picking up and emery board or a tampon, will NOT make you grow a vagina.
15. Just because it's in a carton does NOT mean that you should always drink straight from the container.
16. Unless you are actually a pimp by occupation, a burgundy tweed suit pretty much ensures that you will no longer get sex.
17. I know it's hard to understand, but please don't make fun of women, just because they do not physically and emotionally abuse their best friends. You have your way and we have ours. Let it be!
18. If you choose to buy us clothing, or anything that will have to be a correct size, ALWAYS check sizes in similar products that we already have. This rule is for your self preservation.
19. When you use the last of the toilet paper on the dispenser, when you get a new roll out it goes back in the same place. If you need a more detailed explanation just ask your wife, she would be more than glad to show you how this works!
20. Although we appreciate having a man that helps do home improvement projects for us, I don't really think it's necessary to install a 700 dollar faucet with a beer bottle opener when all the old faucet needed was a screen.


I hope you guys enjoyed these. Please feel free to leave comments and we will add! :)

Tuesday, February 8, 2011

My Hero

Lots of people have a wonderful father in their life who is always there for them no matter what. My real dad is not such a great guy and has never been there for us. We don't even really know him that well. I have a wonderful step dad who is great to me but he wasn't around until I was about 12 years old. I always felt like I missed out on a father figure who was the example of what a real man should be. This was incredibly hard for me, so I can't imagine what it is like for a boy growing up that way. The father is supposed to be the person who teaches him how to be a man and a father and a husband.
My brother Dave has overcome the odds in such a big way. He grew up in a house with 4 women. I can't even begin to imagine what that must be like. Poor guy never stood a chance on ever winning an arguement. He never stood a chance on understanding why he was even in an arguement to begin with. As a woman I know that sometimes we argue over things that are so ridiculous to men that they have no idea what to do but stand there looking dumbfounded and not make any sudden movements. When we were growing up, I'm sure that more than once I was the reason for his confusion. Now that I am older I feel so bad for him. lol
My brother is my example of what a man should be. He took the information he was given from the men who were terrible and used it as a guide of what not to do. I am so proud of the person he has become. He is married to a woman that he has been dating since high school and he treats her like a queen. He has not followed the "talk to her like a dog and smack her around when that doesn't work" example that he grew up around.
He has found his way to God and his teaching his kids as such. That's pretty strange coming from the "don't go to church and do what you want" teachings that he was raised with. His children are taught to feel the love of God and to try to do the right thing to be the best person that you can be. His children in turn are trying to do the right things and be good people.
Dave has become a model father. I don't really understand how he is such a wonderful father even though there was nobody to teach him how. He spends time with his kids and attends their events and schools. He teaches his boys to be respectful and polite and also how to have fun. His boys eyes light up when he walks into a room. It's truly is a magnificent thing to see. Even though he is strict with his boys, you can tell that they know that they have the best daddy there ever was. They are correct.
All these things make me so proud to call myself his sister. The thing that makes me the most proud is he is just a great human being. He takes the time to listen to people and try to help them with their problems. I am so lucky to have such a strong,intellegent,wonderful many in my life. My brother is one of my best friends and he gives me an example of the type of person, we all should strive to be. I am so proud to be in his presence and he truly is my hero!

My Girls!

Ok I was inspired to write this after Monique and I were having a conversation. I have become pretty good friends with some people that I have never met. That is strange. I am normally pretty skeptical of people and to be my friend I have to really feel connected to you.
All my life I have had quite a bit of acquaintances. I have never really had a shortage of people around me. It just takes a lot for me to consider you a friend. Now, I'm not saying that being my friend is this huge privilege, or that I am a hard person to impress. I'm just saying that I am the kind of person who takes a while to trust someone.
In the last couple of months I have people that I actually consider FRIENDS that I have never met face to face. It's hard to explain how you can feel so close to people who you have never even really heard their voice in a conversation. How odd is it that people who you have never met can be the ones who really know how you are feeling?
I know some people don't believe in God but I do. So if you don't and you will be offended now would be a good time to stop reading! I think that God sends people in to your life when you really need them. Before I met these wonderful women, I would say I was pretty thoroughly depressed. I have been sick for a long period of time and nobody understands me. Even though the people around me were trying to help they always seemed to say something stupid that often times just made things worse.
Monique and Falanya in particular have been saving graces to me. I'm not trying to turn this into another "loving my people" article, I'm just trying to make a point. Out of the millions and billions of people who use twitter, or just the internet in general, I was able to find these 2. I feel like these guys get me and they care and that is HUGE! They are able to cheer me up when I'm down and they really do understand what I'm going through.
My point is that it's really strange how these things come in to your life when you feel like you can't take it anymore. I think God uses people to take care of you. God uses people to help you when you really need them the most.

Ashley

I learned at a young age that good friends are hard to come by,
The kid of friend that when you are sad they sit with you and cry,
She is always there to catch me every time I fall,
She makes me feel just like her, like I'm almost 6 feet tall,
I know she's always there when she feels I need protected,
The kind of person you know right away deserves to be respected,
We laugh and talk about everything and nothing at the same time,
Even though she probably gets annoyed she always listens to me whine,
When I was sick in the hospital you sat with me all night,
You make me feel like a good person, even though I'm not sure you're right,
Even when my world seems so very dark and gray,
You are always there to help wipe my tears away,
It's extremely clear to me that I have the best friend on earth,
She is truly my sister, even though it's not from birth,
Some days I feel heavy like my shoes are full of sand,
You will have me jumping and skipping just by taking my hand,
Life has given me hard times sometimes I feel like I can't cope,
How do you always know what to say to always refill my hope,
Lots of times life gets me down everyone knows this is true,
I feel so lucky cause I look up and there I always find you,
I don't know exactly why God blessed me with such a wonderful friend,
I know one thing for certain our friendship will never end,
I say a prayer for you every single day,
I know your friendship is a debt that I can never re-pay.



This is for my best friend Ashley. She is my biggest supporter. She helps me so much and I don't know what I would do without her. I am so blessed!

Sunday, February 6, 2011

Ode to my tweeps!

I used to think courage was a giant lack of fear,
that was until the last couple of years,
The last year especially has been the worst of my life,
I don't feel like a good friend,sister,daughter or wife,
Sometimes I feel so terribly weak
I can't see the sunlight and my outlook is bleak,
I look to the sky for an answer even just a sign,
I can't sleep or be comfortable so I play on line,
I don't quite understand how people that I can't even see,
Seem to be the ones who most get me,
I feel like I'm stuck under a constant cloud,
These people help me find reasons to be proud,
I sometimes waste 3 hours with my face in a trash can or sink,
These incredible women lend me their strength,
I don't quite understand how they have so much to lend,
Or how they make me feel better by being a long distance friend,
It's weird how they always know the right things to say,
Or even just a funny random conversation to keep depression at bay,
It's hard to be sick, you feel you have no reason to laugh,
Then someone starts talking about killing a stuffed bear or a fake giraffe,
I've always been someone who has a hard time trusting people I don't know,
These same people, I am laughing with about busting my butt in the snow,
It's so strange to me to genuinely trust and care a lot for someone who's face I've never seen,
Your guys will never know how much you've helped me!

@messyhappiness
@FaLanYa
@dancingwithpain

Thank you guys all so much! As I have said before I don't have anyone in my life who is chronically ill. I feel like no one understands me. You guys have helped me so much emotionally, I can never say thank you enough!

Saturday, February 5, 2011

Free

Stop this pain, I just want to be free,
why can't you just take out what's poisoning me,
I want all this to stop I just want to live,
The people around me just continue to give,
I'm thankful for others and all of their love,
I'm especially thankful for the one up above,
I feel so cooped up as if in a small cage,
It's like my body is mad at me and it's filled up with rage,
Just to be normal and feel like the old me,
to me doesn't seem an unrealistic plea,
Just a short time of being free of pain,
Almost makes me feel healthy again,
Then the next day I feel so bad
and again I'm right back to feeling so sad,
Sometimes I feel that lupus makes me the only,
but we are all bound together and shouldn't ever feel lonely,
I'm so thankful for all the family and friends,
They are a big part of the reason I keep looking ahead,
I just want to lay down and sleep the pain away,
Of course I can't sleep because lupus plays a cruel game,
I think this was put on me because of the strength I have inside,
somedays I don't feel strong I just want to run and hide,
I don't know how I'm lucky enough to be surrounded totally with love,
Once again that's where HE comes in, the one up above.

Tuesday, February 1, 2011

People really piss me off!

I just want to take a minute to have somewhat of a rant! Something I have noticed lately, with several of my "Chronies" (ha ha get it I used Chronie instead or cronie!) Anyway I have heard several stories of people with chronic illness being looked at a "pill seekers"
This has been happening to me recently as well. I have been ill with terrible pain and nausea and vomiting and it seemed like every doctor just wanted to give me a prescription and send me home. I am still yet to know what is causing me to be ill and in so much pain. That's a whole different rant all together though.
Anyway, now when I go to the doctor they will not even prescribe me anything for pain and they seem to think that's what I'm after. I even found out by looking at my medical records that they ever performed a drug abuse screening on me. First of all let's get one thing straight. I DO NOT WANT PILLS, I DON'T WANT TO HAVE PAIN IN THE FIRST PLACE!! This is the thing I have said time after time. Don't give me pills, figure out what will make me better!
The bad part is that I really want to be mad at the doctors for acting this way and I can't! It's not their fault that this has come about. It's all those pill popping drug abusing quacks that go to the doctor only to get pain meds. Furthermore, I actually have a close relative who is one of these people. Someone, who is healthy and wasting their life with drugs. I am offended by that! I would just like to take a minute to thank them for making me feel like some kind of criminal every time I have to go to the doctor with pain! THANKS YOU JACKASSES!
Anyway that was my crazy little rant!

Monday, January 31, 2011

Time

Sitting here watching the clock, as it continues to tick,
Time's moving forward and I'm still sick,
When I feel good it seems time moves so fast,
When I don't it takes forever to pass,
I don't know exactly when time became my enemy,
I pray that a cure will soon be revealed to me,
I see so many things I would love to do,
IT seems unfair that I never have enough "spoons"
I have wonderful friends and a great family,
Why won't this disease just let me be free,
Some days I feel lost as if in some cruel maze,
So many drugs just keep me in a constant haze,
I feel so trapped by something unseen,
Stuck behind the car window and I'm the bumble bee,
I wish I could see the end to this pain,
It's not very fun being surrounded by rain,
I still keep trying every day is a new day,
Just some are really bad and some are okay,
Sometimes I feel like I'm not moving forward,
but I know there's a cure we are all working toward.

Frustration!!!!

video