Long time no blog

I know it's been forever since I've posted and I'm sorry for that. There's been a lot going on recently, and I haven't been able to make it to my computer much. I now have a mobile app, so you should start seeing a lot more from now on!
I hope you all are doing well! I just wanted to check in and of course share some storing I've been working on. I recently wrote something about someone very close to me who was struggling with drug addiction and some various other issues. It started out as random thoughts and somewhere along the way it turned into a song. The whole thing is true and in happy to say it has a somewhat happy ending because this person is clean now but is dealing with all over the after math. I hope you guys like it, it's called "Lost"

Lost

I miss the days when you were my best friend,
Now I'm watching the life you knew come to an end
I remember when we would laugh about nothing at all
Little did I know, how far you would fall
I miss you so much and don't know where things went wrong
I just keep hoping you won't be confused for too long
Chorus:
I want to lift the veil that's clouding your vision,
I'm stuck here remembering all your forgettin
Time keeps ticking while life passes by
I know you can beat this if only you'd try
I'm plagued with frustration you can't see the cost
Of all the time you're wasting being so lost

There was a time when I saw such warmth in your face
Now fear and addiction has taken it's place
It hurts me to see you are in so much pain
If I could take it away you'd never see it again
I kept thinking I could love you into putting it down
It's just so painful not having you around.
*chorus*

I never thought I would see you this way
You've forgotten how to live, I never thought I'd see that day
I want so bad to help you leave that ugly place
It seems like you don't even recognize my face
I know you can beat it if that's what you want,
When you make that choice I'll be there right up front
Chorus:
You have lifted the veil that clouded your vision
Now you can see all that you were forgettin
Life is no longer passing you by
You've overcome the odds cause you don't want to die.
Your eyes are open and you see the cost
Of all the time you've wasted being so lost

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.

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!

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!

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.

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.