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"

Where have I been? I'm back and I have some NEWS!!!!

So much has happened in the last couple of months...I wouldn't even know where to begin! There have been ups and there have been downs! And boy!!!!...has there been drama! I have more free time now and so I will update my blog more often. Here are some updates:

I'M ENGAGED!!!!

 



May 18, 2013 was such a wonderful day for me! I went to Weatherford for Walk for Lupus Fun Walk. My very first Lupus Walk! We had team shirts made! And our name was Sheila's Divas and Warriors! Little did I know that the love of my life would be there (even though I thought he was at work)! The coordinators of the Lupus Walk, my siblings, my parents, etc. were all in on the surprise engagement plans! It was definitely a magical day! My fiance participated in my very first Lupus Walk and now he will be there through all of them! Such a wonderful man to have by my side supporting me through all of this! My support system has grown!

 

SURPRISE GUEST!!

 

The morning of the walk...my parents came by the hotel to see us and make sure we were preparing for the walk and they had a surprise for me...MY BIG SISTER and BABY NIECE! Seeing her made me EXTREMELY happy! I missed her soooo much and she has done so much for me! She is the reason I chose to participate in this walk! She flew all the way from FLORIDA just to stand by my side (knowing all of the things that were about to happen that day)! She really went through it just to get here...I could not ask for a better older sister! She is my WORLD!!

 

 

MY TEAM

 

Who was on my team: Sheila's Divas and Warriors? I was surrounded by so many people who supported me in one way or another during these months that I have been fighting this illness. These people consisted of my parents, my aunt, my many brothers, my sisters, my sorority sisters, my cousin, and other family members! We were a pretty big group and we looked MARVELOUS in our purple and blue!

 

 

ADVICE!

 

The most important thing to have when going through and fighting ANY chronic illness is...an AMAZING support system! That is completely different than just a support system. An AMAZING support system does not have to consist of family members...it can be close friends or even co-workers. Anyone who will be there for you and tries to understand what you are going through. I am just blessed that my support system consists of family (whether they are blood or not).

 

 

LIFE JUST KEEPS GETTING BETTER AND BETTER FOR ME

AND I KNOW THAT IT WILL GET BETTER AND BETTER FOR YOU!

 

STAY POSITIVE!

Family Trip or Girl's Trip?

Last month I took my first trip since being in the hospital. I went back to Florida to see my big sister and her family. Most of all, I went to see Zoe! The newest addition to our family!

The plan was for my mother and I to leave on Wednesday. My father and brother were to leave on Thursday. Little did we know...that would not be the case. My mother and I arrived on the day we were suppose to, but my father and brother did not get to come at all. Why you ask? The PILOT did not show up to fly the plane! Yes, you read it right.

That is when it turned into a mother/daughter trip. We still ended up having a blast!

The girls (me, my mother, and my sister) went to Universal Orlando and rode tons of movie rides. Before then, I did not think that those kind of rides would even be remotely fun, but they were EXTREMELY fun! My mom even got on them! We even rode a water ride....TOGETHER!

I can't wait for us to go back in the summer...as a family...on one flight....and enjoy Florida together! Life is amazing and I can't wait to see what the future holds!

The Pain is Minimal...But Still There

In some of my earlier posts I mentioned having pains and sores on the tips of some of my fingers. I am happy to say that it has significantly improved. It has not gone away (like I would love), but it is no longer a daily occurrence. My hands are still colder than most and the tips are still sensitive. The sores are almost COMPLETELY gone! Thank your Lord! I almost have complete control of my hand. The coloring in my hands are almost back to normal.

When I tell you that God is good...I am telling you from experience. I use to cry EVERYDAY because of the severity of the pain I was enduring in my fingers alone. My mother would be right there with me...in tears. My father would be there trying to figure out what he could do...hurting for his baby girl aka his twin. He is wiping away our tears day by day!

Cooking and Zumba!!!!!!!

Growing up with my brother, my mother always use to cook this dish that resembled Chinese Food with. A twist. We thought to ourselves that our mother is a Nigerian woman....cooking "Chinese food". It was soooo good! We loved it so much that we deemed it Nigerianese!

It had been awhile since we have had it. One day, my mom and I were at home and could not to think of what we were going to cook. Mom said "How about Nigerianese?" I was elated! My mouth was watery and ready to learn. I stood by my mom the entire time in the kitchen...eager to figure out how she made it.

I am proud to say...I now know how to make it and will definitely be making it for my family one day. And no, I will not share the recipe with you :-)

Another exciting update is that I have been attending Zumba again! My first class out of the hospital was a little tasking because my legs still were not strong enough, but I am proud to say that I pushed myself and made it through the entire hour without sitting down! Yay! I went to it with my little sister! She's an amazing supporter!

Now I attend Zumba multiple times throughout the week. I am still trying to find my perfect schedule that is full of teachers that push me the way I need to be pushed. These legs will not get better on their own! :-)

Life is sooooooo good!

New Road...New Professional Goal!

All of my life I have said that I want to be a Pediatrician...I have NEVER wanted anything else...until now! My passion has always been to make a difference and help people especially children. My passion was never in becoming a Pediatrician. I simply though that was the best way to accomplish my goal...

When I was in the hospital...I changed my mind. When you go through the kind of horrifying drama that I went through, finding out so many life changing information in so little time and coming so close to heaven, you have a lot of time to just lay there and think. Sometimes you need someone who knows what you are going through and has been through it to be there and talk to you. Even if their situation is not identical...at least they have been through something that changed their life, medically, forever.

Every morning a psychologist came in with my main doctor as he made his rounds, but I never got the chance to just sit and talk to her. At the time, I did not know that I needed to, but looking back, my thought process may have been a lot different had I had the opportunity to just talk.

Everyday I got to talk to my mother, who continually lifted my spirits. She spent almost every waking moment with me. As soon as I was considering changing my destination I told her and she said she would support me. When I told my dad, brother, and little sister while I was in the hospital...they said the same.

The new direction I have chosen to take is...drumroll please.......Clinical Psychology. I want to focus in pain management and child psychology. This is where I believe my true calling is. I feel this is where God is trying to take me. This field is where I have decided to devote my life to. I made this decision for me and no one else. I truly believe that this is one of the best decisions I have EVER made!

Thank you Lord

Physical and Occupational Therapy Update!

My next physical therapy session was on January 8, 2013. We repeated the "6 Minute Walk Test" and this time I was able to walk approximately 1500 feet in the 6 minute time frame. My PT told me that I had done significantly better than he thought I would and that I had met all of the goals that he had made for me. The last thing he wanted to check was how I was going up and down the stairs. When he saw how much I had improved on my own...he decided to discharge me. He said "It is a miracle that you have bounced back this much in so little time" I replied "It is not me...it is God." After only 2 sessions of PT, I was discharged. Another doctor/appointment that I can scratch off my list.

My next occupational therapy session was also on January 8, 2013. This appointment was different from the first one and it was a different therapist. This therapist worked me out....I was sore by the time I got home. He was very nice and gave me exercises to be doing at home. I was determined to knock this other therapist off my list because I was tired of appointments so I did exactly what he told me to do and then some.

The next session was January 10, 2013. He showed me some new exercises and had seen that my arms were already stronger. He was also shocked. He could tell that I have been following what he told me to. The strength in my hands had improved...they weren't average yet but they had significantly improved. He asked me if I thought that I could continue the exercise regimen that he had showed me on my own....of course I told him I could because I have been. He decided to discharge me! I was ecstatic!

No more therapists!!!!!

Update on my Labs

On December 21, 2012, three days after my discharge from the hospital, I went to see my Hematologist (blood doctor) to check how my labs were looking. Here are the results that we received:

• Red Blood Cells were at 2.29 and the normal range is 3.70-5.10
• Hemoglobin was at 7.4 and the normal range is 12.0-15.0
• Hematocrit was at 21.6 and the normal range is 34.0-44.0
• Platelets were at 364 and the normal range is 150-450
• Creatinine was at 1.66 and normal range is 0.51-0.95
• ALT (Liver function) was at 248 and the normal range is 10-35

So you are probably wondering what all of that means and have probably noticed that some of that is out of range and does not look good. Well...you are right...to an extent. For any other person that has not gone through what I have been through...those numbers would have been red flags, but those numbers are 1000% better than they use to. After this appointment there was a little fear in my parents because of my HIGH liver functioning. I remained strong and did not let my faith dwindle. I knew God was only trying to see where my faith was and how strong it truly was because here are the next results that were taken on January 4, 2013:

• Red Blood Cells were at 3.11 and the normal range is 3.70-5.10
• Hemoglobin was at 9.4 and the normal range is 12.0-15.0
• Hematocrit was at 28.5 and the normal range is 34.0-44.0
• Platelets were at 236 and the normal range is 150-450
• Creatinine was at 0.94 and normal range is 0.51-0.95
• ALT (Liver function) was at 35 and the normal range is 10-35 

Everything is not perfect, but it is looking better. How else can someone explain a drop in my liver functioning from 248 to 35 in a matter of 2 weeks except that it was the work of the Almighty? My platelets dropped a tad bit because they are tapering me off the steroids...it was expected. The creatinine is how they monitor my kidneys. They are completely back to normal!!! And I soon found out that I no longer had to see a Nephrologist (kidney doctor)! God is great!!

New Year's 2013

New Year's Eve 2012 was more tamed then the past New Year's Eves that I have had, but I still had a blast. I had a sister date with my bestie/little sister. We went to the Harbor and had a late lunch/early dinner. Things were great!

Later in the evening, one of my friends came over and we watched movies and just hung out. Chit chat...laughing...etc. He drank some wine...I couldn't because of my kidneys :-( . We hung out with my dad and watched TV until my dad decided to go take a nap before midnight...lol (Mom was already taking her nap)

5-10 minutes before midnight I went to go wake my parents up so that we can all bring in the new year together. My brothers promised that they would be there and I had not lost faith yet. They never let me down! They showed up...sprinting into the house...at 2 minutes until midnight!!! I knew they would be there! You should have seen the size of the smile on my face. I knew that the first seconds of the new year was going to be perfect!

When the clock struck 12 we all celebrated and gave hugs and handshakes. Of course, we had to give thanks to the Almighty God because without him I know that I surely would not be here. I brought in the new year with my parents, a friend, and my 2 big brothers...it was the best new year's that I have had to date! Great start to 2013!

My First Day of Physical Therapy and Occupational Therapy

My first day of Physical Therapy outside of the hospital was December 20, 2012 (2 days after my discharge from the hospital). I had to take my walker with me because I could not apply too much pressure on my legs for very long. Sometimes I would catch a cramp in my calf and it would cripple me....bringing me to the ground. I never fell because I always had my parents or siblings or any family member right there by my side. During this physical therapy appointment we did the "6 Minute Walk Test" and I was able to walk approximately 740 feet in that 6 minutes. That is way below average, but I was limping at that time. I was very weak.

My first day of Occupational Therapy was December 31, 2012. This appointment helped me a lot. I was not aware of how weak my arms were until I got down on all fours and my arms began to shake. Those of you who know a lot about what I am going through, know that I also have Raynaud's Syndrome. This is when your fingers turn blue and get ice cold at random times...even in the Summer! Because of this I have sores on the tip of a few of my fingers. So, one of the occupational therapists that was assigned to me is also a hand specialist. She gave me so many tips about how to live with Raynaud's and tricks about how to take the pain away. That day, after I got home, my little sister and I went and bought a paraffin bath and paraffin wax. This was one of the recommendations the OT gave me. It works so well and it keeps my blood circulating in my fingers longer. I do the paraffin treatment multiple times throughout the day. It even moisturizes my skin! Love it!

On the Road Again

It has been months since I was behind the wheel of a car...I have been sitting around watching other people drive Tyrone (my baby) or riding around in someone else's car. I knew why I was not able to drive, but I still did not like it. I felt as if I could not do anything for myself!

The reason I was unable to drive myself was because I had trouble staying awake. I would randomly fall asleep even if I did not feel sleepy. There were times where I would doze off while I was behind the wheel. God was the one who kept me safe. This would happen while I was having a flare up. The scary part is...sometimes I do not know if I am in the middle of a flare up.

I am still taking it day-by-day, but I am back on the roads. I do not drive in the evening unless I have someone else in the car with me or unless I am on the phone with someone. I make sure I get enough sleep at night and I am on a very strict medication regimen. I am slowly getting my independence back and I could not have done it without the love and support of my parents and the faith that I have in the Big Man above!