Inspired by Jamie/ Lupie Cover Video

Hey followers! I hope you're all doing well. I've had a tough few weeks. I've been feeling pretty badly. 

As you all know, I try to find the good in things whenever I can. I started this blog a long time ago and I don't really share a lot of stuff because honestly I guess I just thought it was pretty ineffectual. I started this up because I try to write the truth about my life, whether it's good, bad, or ugly. I thought if someone else saw it and it helped them to see they weren't alone, it would be worth putting myself, my feelings and my experiences to the world. I've only been posting here every once in a while because although it's therapeutic for me to write, I didn't feel like it was really necessary to share it because nobody was really seeing it. Well, as I often am, I was wrong. 

I have a new friend named Jamie because she saw my blog and felt connected to it. She reached out to me on Facebook and told me how she felt about my writing and it filled up my heart! I couldn't believe that I had reached someone and helped them feel less alone. That has always been my intention from the start. I was so honored and touched that she felt like my writing was so powerful. We ended up having a 2+ hour conversation about the things we've been through and the trials we've faced. It helped me again to connect to someone who has faced a lot of the same trials I have. I never cease to be amazed by the strength of the people I've met. So this blog is for Jamie. She has encouraged me to write more and put my life back out there again. So, this is what I'll be doing. I'm going to go back to my notebook and catch up on the things that I've been writing and post them here for you to see. 

One of the things I did a while back, was rerecord a "lupie" version of the song Royals. My friend Falanya at A Lupie Existence has done several cover songs and I thought they were such a cool idea. I've sang and written dumb things like this before, but I never really thought to post it until she encouraged me to.

So, I hope you enjoy this goofy song I call "Normal". Also, you can expect more posts in the next few weeks. I'm going to post as much and as often as I can thanks to an inspirational woman! Thanks Jamie! Be well!! 😀💜💜💜💜

You can check out "Normals" here hope you have fun watching. I had fun making it! Lol

http://youtu.be/SNzPw8YULpU

Lupus Rash Discoveries

Hi guys! I just wanted to update you all. I've had some wicked flares lately and I wanted to share something with you all. I get the typical, textbook but extreme malar rash every time I have a flare. I'm lucky enough to have a mother in law who's an esthetician. So, during my last flare, she wanted to try to help. I was definitely skeptical because usually nothing helps the rash. It feels like my face is on fire and it looks insane! But she's an amazing woman and as you know from my past posts, she bends over backward to try to help in a any way she can, even if it's small. 

You all probably know where I'm headed, IT WORKED! And I do mean worked! It helped that heat that we all know and hate and it looked much better! So, if you need some release from your skin, talk to a person who does facials. A lot of cosmetologist a do it, but there are also people like my MIL, who are trained just for skin. I know it goes without saying, but I feel I should anyway, tell them you have lupus.(it can limit some of the services they can do and will help them determine the best product to use.) 

I don't know about you, but when I'm having a flare, something as "simple" as helping alleviate the rash can do a lot to make me feel better. If you find a good one, they can work wonders! Also it's relaxing! Which you all also know, can help with the length and intensity of the flare. Stress can trigger and amp up a flare easily! The photos attached were taken the same day. As you can see the results are kind of amazing. Also, that one treatment from her seemed to fend off the rash for the entirety of the flare. (I had to do normal skin care myself, but just cleanser and moisturizer.) some of the products can be pricey, but again if you find a good skin care professional, they'll provide you with samples to help you find what works best for you! I'll try to include more information later, such as products and such. The thing I do want to add is to read the product labels on your skin care products. For example, because I get the rash so badly and easily, (literally 30 seconds of sunlight turns me into tomato head) I bought and was using a neutrogena moisturizer that had SPF in it. I didn't think to look any further because I'd made a good choice is choosing a good moisturizer that also had sunblock in it, or so I thought! Upon further inspection of the ingredients and warnings (by my MIL lol) it turned out that the product actually had a warning that it can cause your skin to be more suseptable to the sun and cause sunburn and hyper pigmentation! So please be aware of that and of the word "fragrance" in skin care product ingredients. I've researched this on the advice of several skin professionals. It turns out the word "fragrance" in an ingredient list on products is basically the word they use if they don't want to list a product. I just always thought the word "fragrance" was just the ingredient to give the product it's scent. However, it turns out skin care (and other) companies get by, by listing potentially "harmful" or less than desirable ingredients to the trained eye, by simply listing "fragrance". I know this is kind of boring, but I thought it was pretty enlightening. Just be the judge of the photos. Just a small side note, these photos were taken in February and I had NO sun exposure!! 

These were taken with no filters or editing. I tried to use the same pose, lighting. Etc. so the differences could be seen! 

Psychological Illness

When you live with a chronic illness it's stressful in so many ways! It's easy for other to watch and judge our lives. Almost everyone I've talked to says the same thing. They've been called, lazy, fakers, drama queens, attention seekers, drug seekers or just flat out overall worthless. Why or how anyone could think we could choose this life is crazy to me. We deal with that kind of judgement EVERY DAY! Most people couldn't handle it once. Does that make us better, or stronger? No it doesn't. We just don't have a choice. It's the hand we were dealt!  It's a financial, emotional, physical, and psychological struggle! The physical is difficult and so is the financial aspect. What I wasn't really prepared for were the psychological changes. 

Financially, we all know how ridiculously high the expenses can be. Between actual, so called, medical care and just logistics it gets expensive. I don't know how people with lupus, that don't have insurance are able to survive! For example, if you lupus is, for the most part "under control", and you have a good rheumatologist, the "norm" for is, is insane for most! Every 3 months means, a rheumatologist appointment, lab work, and whatever prescription costs you have in that time. Not only that but we typically have to also have a family doc on the side, which is generally at least an appt. every 6 months. God forbid, your lupus or symptoms aren't under control! I'm in that situation now. This means I need prescriptions every month at least. I also realized earlier that because things are so tough physically, I'm hard pressed to think of a month where I don't have to visit a medical appointment. That's not to mention, urgent care, ER, or extra prescriptions I might need. (Ie. steroids, nausea meds, etc.) so the physical and financial strain is pretty significant. Those issues are however tangible to a certain degree. Although bills seem bottomless and pain seems to persist, those can be dealt with to a degree. I can work on paying down my medical bills. I can take medicine or do different things to manage my pain.

How do I explain the emotional and psychological problems? It's hard to believe that I'm only 30, but I've been living as if I'm in my 60s or above for 5 years. How can I explain, that I have a hard time relating to people my age? They're busy with their children and friends and family and I'm busy with meds and doctor and hospital visits! The inspiration of this post cane from speaking with a friend and realizing how often I truly have to see doctors . I have a doctors appointment tomorrow, (routine appointment) and I'm trying to remember when a period of time has gone by that I haven't. It's a struggle just to maintain tasks that people do every day without thinking. Isolating yourself from others, whether it's intentional or not, is NEVER a good idea. How can you stop it? The life we are forced to live does it for us! Doctors appointments are the majority of my outings. Most of my money goes to doctor bills and meds. Being chronically ill, to the point of disability has caused me to fight with the person I want to and truly am, and the person the disease seems to be trying to turn me into. I'm clawing at the personality I have and how I want to be. 

The basic question that I'm trying to ask is simple, but I have yet to find or be given the answer. How do you remain your "normal" self, when you feel like everything that was normal about your life has been stripped away? How do you keep the "spark" in your eye when you feel like you're drowning in the ocean??Please feel free to offer any advice you can, or just feel free to vent if you need to. That's kind of what I needed. If you're reading this, thank you and I'd love to hear from you! :-) 

Who would choose this???? 

Alone (Poem)

Again, I know I write downer poems, but it's how I get my feelings out. Hope you can take something from this.  God Bless! 

Alone

I hate the way that I look,

Can't stand the way I am,

Struggling to keep it all sealed up, 

Inside my head like a can.

My life has lost all meaning,

In fact it makes no sense,

Nothing to show for my life for years,

But a body and mind of dents.

Why can't I escape this madness, 

How long is it going to take,

For me to get back self respect,

Or end it for sanity's sake?

Perhaps I'll go crazy,

I may never break free,

Perhaps I AM just useless,

This isn't the life for me.

Some say that I'm not trying,

Or that I'm just a waste,

The sad part is I agree,

But the words have bitter taste.

I feel alone and scared,

And worth nobody's time,

If I can't justify it myself,

How could others value my life?

I don't know how to escape it,

Feeling totally off the rails,

Never can I speak the words,

My mind is terribly frail.

People try to help me,

They try so hard to care,

I won't talk to those around me,

It would only make them scared.

I hate to be this person,

I'm nothing but dead weight,

Ones I love are left to carry, 

Will I ever escape this fate?

I try hard to remember, 

Others have more pain,  

I'm afraid to voice my thoughts, 

Cause the truth would be too plain.

All it would do is scare them,

The ones I love so dear,

I already cause too much pain,

And even too much fear.

My desire to explain,

Is the intention of this poem,

I hate feeling so empty, 

Living my life in my head. ALONE! 

Feeling pretty down :-(

Hi guys! I'm sorry I've been absent and I honestly don't even know if anyone is even following my blog anymore. If you are, thanks! ;-) lol. Things have been pretty bad for me lately. If you have been following this blog, you will know that's when I write poems. I know my poetry tends to be pretty depressing. Sometimes, it helps me to write out my feelings. I've been feeling so alone lately. Just being sick is a big part of it, but there are a lot of other things as well. I don't really want to get into too many specifics. With the blogger app, I'm hoping to be able to blog more often! I hope you will all hang in there! Even if I'm just talking to myself, I guess it's still advantageous for me! Lol. 

Even though most of the time I have someone around me, I've been feeling so lonely. I tend to isolate myself when I'm sick. Lately, I kind of feel like some of those in my life are just fed up trying to care about me. I'm not really sure how to move forward. I've been trying my best to do as much as I can when I can. It seems as though nothing I do, or ever can do, will be enough. 

When I was healthy, I was always doing for others. I literally ran myself ragged to be there for EVERYBODY in my life. No matter what hour of the day or what day, I would always be happy when the people I cared about were happy. I didn't do it for recognition or to be thanked or re-payed. I did things for those I cared about, because I cared and wanted them to be happy. I don't remember ever asking for, or trying to depend on anyone before I got sick. Nobody can anticipate this kind of thing, that's for sure. When I realized that I would, in fact need to ask or depend on people, I thought they'd be here for me. A lot of them were in the beginning. I think once they realized that it might be more than a one time thing, they gave up. Then, they walked or in some cases RAN away. That's been happening more and more lately. 

Now one of the people closest to me has given up on me. Anybody with a chronic illness or any chronic issue for that matter, knows how easy it is to give up on yourself. It's actually difficult not to. So, what keeps us from doing that? For me, it's been the people I love and trust. Now that a lot of that's gone, I'm starting to feel like maybe I should just give up. It makes me feel weak even saying that, but it is what it is. If you have other suggestions to keep going, please let me know. 

Life is funny. Even when you know you've hit rock bottom, life crumbles the rock and drops you even lower. I'm hoping soon, I'll have a follow up post to tell you all something positive. For right now though, this is the way I feel. For me, sometimes just hearing others' thoughts and feeling helps me. Just to know I'm not alone. As I said before, I'm fully aware I can post some depressing things. However, I do it to help myself and I hope my words can help others the way others help me.  So, if any of this sounds familiar, just comment or look me up on twitter. (My info page is a little out of date it's @RosieThimmes) I've missed blogging and I hope you all are well! :-) God Bless!

Late Night annoyance

I have learned so well to despise the night
It's become so lonely and sad
There's no such thing as sleep when you're health isn't right
I lie in bed for hours not believing I can feel this bad
When will it end when will it stop
I feel like life is a trick
My health balloon has been popped
I'm so tired of being sick
If I woke up healthy I'd be really shocked
Something must be terribly amiss
To not have to see so many docs
I have now become accustomed to feeling like this
I Try to lessen others worry all the while
The end of the tunnel, the light is very small
I'm trying to keep going I try to just smile
I just hope I'm strong enough to make it through it all

Mama Leah

This is for you Mama Leah! Short and sweet I love you and you are awesome, that is all! Lol

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.

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!

"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!

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."

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

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!