Stress

I haven't been blogging as I would have liked. Too much has been going on.

I feel like all of the issues surrounding me is causing stress for the people around me. If it isn't my health...it is something else. Sometimes you can't win for losing. You either say too much or not enough.

So much stress my body is falling apart. I want to go to the gym to work off some stress but I don't have enough energy. I still wonder why this is happening to me.

This is my stress reliever...blogging.

It Has Almost Been A Year!!!

It has been awhile since I last posted. I have been going through a lot emotionally and physically. Life is definitely a rollercoaster! October 24, 2013 marks my 1 year Lupus Anniversary! Some may ask...why do you want to celebrate having Lupus? Well...here is my answer:

I am 22 years old and I have been through hell and back! Life has not been nice to me over the last year....but I am a lucky one! Over the last year I have heard of so many people losing their lives fighting this horrid disease, but I am still alive. Before my diagnosis I knew absolutely NOTHING about Lupus...rarely even heard it's name. But here I am fighting for my life everyday.

Some people may see Lupus as a minor thing because you can't look at someone and just know that they are suffering from it. Lupus is a mysterious disease. Many people who know me think that I only have Lupus, but I don't! I have Mixed Connective Tissue Disease meaning I have multiple autoimmune diseases. Lupus is the one I suffer from daily. I also have Raynaud's syndrome which leaves me with excruciating pain in my hand. I do not have proper circulation in my hands...especially my right hand. Randomly my hands or fingers will turn blue or purple. I also have a mild form of arthritis and levoscoliosis of the lumbar region. Levoscoliosis is when your spine curves to the left.

Many people have lupus (1 in every 250), but everyone's experience is different! No 2 cases are the same! This is the story of my life! Everyone deals with their story however they choose and if you have a loved one going through this....let them deal how they want. Just be there!

Recently on my Facebook I asked for my friends and family to ask me questions for my blog. That way I could answer their questions and share with all of you!

Someone very close to me asked "How do you continue to stay so strong and smile no matter how you feel?

Yes, I am strong even if I have a breakdown. Am I strong everyday? No! But I am NEVER weak! I rarely show how I really feel. I smile through my pain in public! There is never a morning when I wake up with absolutely no pain. I always lay in bed encouraging myself to get up and push through. There is NEVER a time I get up out of a chair and don't feel some sort of pain, but if I do not get up who will get up for me. I hold back tears EVERYDAY because I do not deserve this life. One thing I do know is that EVERYTHING happens for a reason. My reason may not be 20/20 clear just yet but it is blurry...just need to focus it.

Having a support system is great but they will never understand what you are truly battling. Sometimes fellow lupies won't understand completely. Lupus is an extremely lonely disease. Before my life COMPLETELY changed last year, I can not recall a time where I was even remotely depressed. Ever since this life changer...I can tell you the last time I went through some sort of depression. Every month I have a low point, but I also have high points. Yes, I will go through depression...my life is a rollercoaster...but will I stay depressed? NOT AT ALL

So how do I do it? I do NOT have a choice because NO ONE will do it for me. I only have 2 choices now...to fight or not to fight. If I fight I can make it in life to points that people take for granted such as getting married, having kids, making a difference, etc. If I don't fight, Lupus will take control of my body sooner and I won't see those things happen in my life. I have lost many friends and people I considered family over the last year because they chose not to understand or just did not care. Did I let that get me down? No! That simply reassured me that they were not meant to be in my immediate circle or support system. Life is not perfect for me and I would not wish my life on anyone but these are the cards I was dealt so I am playing to win!

Let It ALL Out

There are days where I choose to see the positive in everything and every new diagnoses. But there are also those days where I want to ask "why?" and I just fall into a dark place. Slip into a depressed state and shut the world out. Some times I can't be 100% about how I feel or what I am going through because of how others may feel or take it...so I shut down and the wall goes up. One of my many online support groups posted this poem and it shocked me because it summed up how I feel some days. Sometimes you just need to cry and let it ALL out!

My Friend, I Care

Don't t tell me that you understand.

Don't tell me that you know.

Don't tell me that I will survive,

How I will surely grow.

Don't tell me this is just a test, that I am truly blessed -

That I am chosen for this task,

Apart from all the rest.

Don't come at me with answers

That can only come from me.

Don't tell me how this will pass,

That I will soon be free.

Don't stand in pious judgment

Of the bounds I must untie,

Don't tell me how to suffer,

And don't tell me not to cry.

My life is filled with selfishness right now,

My pain is all I see,

But I need you and I need your love,

Unconditionally.

Accept me in my ups and downs,

I need someone to share,

Just hold my hand and let me cry,

And say to me "My friend, I care."

- Joanetta Hendel -

The Rich & Famous Suffer Too!

I have come to the realization that there are a lot of famous people who are suffering like myself and other Lupus patients. So I decided to make my first blog back from this random break to be somewhat fun and interesting.

In no way, shape, or form am I celebrating this chronic disease. I am informing others of the many people, in the spotlight, that are trying to make a life for themselves in the public eye with this burden on their back.

Here goes....

SHAMICKA LAWRENCE

MICHAEL JACKSON

TONI BRAXTON

SEAL

NICK CANNON

CORI BROADUS (SNOOP DOGG'S DAUGHTER)

TIM RAINES (LEFT FIELDER FOR OAKLAND ATHLETIC '99)

BARBARA AND GEORGE BUSH'S DOG, MILLIE :-( 

AND MANY, MANY, MANY MORE......

 KEEP YOUR HEAD UP (I AM TRYING TO)! YOU ARE NOT ALONE OUT THERE!

I'm 22!: Recap of the Last Year

Recap

This last year would have to be the worst year of my life and some may see it as the best. What has happened to me in one year, in most cases, has not happened to people in their entire lives...especially 21 year olds. In a 5 month period I was in the hospital at least 4 times, platelets below 4, 000 many times, diagnosed with Mixed Connective Tissue Disease and ITP, had multiple platelet and blood transfusions, kidney failure, and daily flare ups. I have gone through chemotherapy and take at least 7 pills a day. I was only 21...and my doctors tell me not to stress? Yea right. In the midst of all that craziness I managed to meet the love of my life and now I'm going to get married. After the storm the sun will shine.

There's not a day that goes by that I don't feel broken. I look back at the things that I used to be able to do such as color guard, marching band, swimming for long periods of time, shot put, discus, etc. Then I realize that the way things are now I would have never been able to do those things. Sometimes I still wonder why this had to happen to me. This is such a lonely disease. Even though people around you try to understand...they never will. Sometimes you will feel like you are complaining way too much so you don't express everything that is bothering you. There have been times when I have felt like stopping ALL of my medication...cold turkey. Everyday I feel like a pill popper. I feel like my medication is my life line. No one knows what is best for you except you. No one knows what you are going through except you. You will feel like you have lost some people in your circle because they have turned their backs on you. You will be disappointed and some will make you proud. Your eyes will be opened to the capabilities of some people and you will be shocked. Your close and distant circles will stress you out to the max and not realize it. Do not dwell on the past because that will only cause stress. Learn and keep moving forward. Do not continue to bring it up. Life will happen!  But always remember...the strength to survive comes from within...do you want to live?

Sometimes you may want to keep things to yourself or deal with it alone...that's perfectly fine. Just don't do everything alone. It gets to a point where you feel like you are complaining EVERYDAY and may feel like a burden or that your pain will cause pain to the people close to you. Just keep telling yourself that there is a light at the end of this dark tunnel you are traveling through.

If I can make it through these trials and tribulations then I am here to tell you that you can too! Regardless of what you are going through...you will shine through. Keep reminding yourself that you will make it!

Birthday

Those of you who know me know that birthdays are very important to me. In 22 years I have had 21 celebrations. What? That doesn't add up! I know. I did not celebrate 22 the way you are use to me celebrating. My best friend/little sister took me to lunch and gave me an amazingly crazy gift. My fiance gave me a beautifully over-sized card. Some people forgot and some people remembered. Those who forgot...it was possibly because I didn't make a big deal about it as I usually do. So what did I do that day? I went to work and then home to sleep early. Woke up the next day and had a excruciating flare up but remained in good spirits. All I could think of that day was that I was alive. So many times this past year...the devil has tried to prevent that from being a reality. It could have been a more depressing day...my loved ones could have been visiting me somewhere else...but I chose to fight. I am here because He gave me the choice to fight or give up. This is a decision you have to make everyday. There have been days that I have wanted to just give up, but instead I chose to fight.

I don't care how old you are...you have NOT accomplished all that you are capable of. So keep fighting. What I am fighting is a lifelong fight...so I am learning to live with this everyday. We may not be fighting the same illness....your illness may not be chronic...but we will learn to fight for our lives...together!

REMEMBER: When you replace "I" with "we" even illness becomes wellness! Live life to the fullest!

Find Your Motivation!

Living with a chronic illness makes you appreciate all of the little things in life. Some things may not seem like a big deal to other people, but it may mean the world to you! Do not compare your accomplishments to others around you because everyday is LITERALLY a blessing from God when you are living with a chronic illness. Tomorrow is SERIOUSLY not promised to anyone...especially YOU!

With that said...here is my milestone that I recently achieved...DRUMROLL PLEASE!............This was the FIRST week since I have been out of the hospital that I was able to make it to work everyday!!! That is HUGE for me! This week I came to work even on my Physical Therapy day. Trust me...there wasn't a morning that I did not feel like getting up, but I told myself that I need to push it and be committed! I still had my flares and still had those days where I would RANDOMLY fall asleep, but I made it!

Something as simple as making it to work has motivated me to push myself in other aspects of my life! I hope that any of you reading my blog can find your motivation to do what you have to do to succeed...no matter how big or small it is!

God is truly working in my life and I honestly would not be here today if it was not for him pushing me and giving me a reason to fight for my own life! If you do not fight for your life then who will? If you do not push yourself to succeed then who will? If you do not get up and make a change in your life then who will? God won't do it for you. God is simply your front seat passenger giving you advice on which direction to go or which road to go down. It is ALL up to you to take the necessary steps!

KEEP YOUR HEAD UP AND STAY POSITIVE!

Building YOUR Support System

There are so many things that you need to learn when you are newly diagnosed with ITP, MCTD, Lupus, or any other chronic illness. As you are learning and going through it...your support system needs to be learning as well. You cannot expect for everyone to know how to handle what you are going through right off the bat. Just as you had to learn...so do they. So I have found a way to make the explanation process so much easier...The Spoon Theory by Christine Miserandino. This is not only for Lupus patients. It can be applied to any chronic illness in which you have to take it easy and think ahead about how you are going to manage your time and energy throughout the day.

Here is the link: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/



When I first read the Spoon Theory...it helped me (the person with the many chronic illnesses) to understand what I was going through and how to better survive throughout the day!

You will NEVER stop learning about your ILLNESS and you will NEVER stop being surprised about what you find out.

The sooner you realize that having an AMAZING support system will prolong YOUR life. This is YOUR life and YOUR support system which means YOU are not alone!

WHEN YOU REPLACE "I" WITH "WE" EVEN "ILLNESS" BECOMES "WELLNESS"