Wednesday, January 19, 2011

MUSC - The BIG Day


The internet defines this adjective better than any way I could relay to you how I feel. So…what defines this word?

- Drained of energy or effectiveness; extremely tired; completely exhausted
- Depleted of energy, force, or strength
- Drained physically
"the day's events left her completely exhausted--her strength drained"

I literally am too exhausted to even type this. I felt that the internet could define the way I felt better than my brain could relay to you.


- Having or manifesting hope
- Bright: full or promise

The word and definition that describes how my heart feels! To describe today in every perfect detail would be impossible! All I can say is I know that God has perfectly planned and designed all of this to go according to HIS WILL!!
We just got home – 4:00 pm! Grandma, Papa, Mom, and Dad all went today! We started out at the hospital this morning at 7:45. We registered me as an in/out-patient and proceeded to meet with the man who we are hopeful will change my life! After much paper – work, I entered the room and talked to one of Dr. Comerford’s fellows. A fellow here is a med student that is precepting…pretty much finished but have to work under an experienced doctor before being able graduate. After talking with Josh (his fellow) I felt relieved just from him listening. Dr. Comerford came in after Josh and his presence (Dr. Comerford’s) was filled with such a spirit! He listened closely and was very receptive and empathetic to the entire situation/my case/the severity/EVERYTHING.

Dr. Comerford told my family and I; that Dr. Rodriguez truly had done everything in order as it should for my case. He also said that Dr. Rodriguez had done exactly as he would have from the beginning till his time that he couldn’t go further.
Dr. Comerford is the next step, so we ARE in the right place and with the RIGHT doctor! It was so nice because at one point he asked us what we wanted. He knows we have traveled so far with *me* who is so sick and he knows we ARE desperate and at the end of our rope with everything. He knew we were there for him…so he asked. “Are you wanting me to give you my opinion of what I think and what I feel you need to do? …or… Are you wanting me to evaluate and do as I feel to treat and help the situation?”

Just asking this question flooded my body with endorphins. Here is a man who is the best in the South and he is asking me “Are you ready?” – That is how I took it…no matter what I was getting help!

So how did we answer!? I shook my head up and down before he even finished the second question! I said “Yes sir, I want to stay. I’m here to get help. I already planned to stay, so if it takes a year I’m here!” I have never found myself so eager to do something that is so drastic. Let me explain on this:

(For most people receiving special treatment related to a chronic disease, they want to be nearest to the people they love. Not only because they want to, but because being around the people you love most is helpful in treatments and anything being done/performed. Having the people you love helps you have that security and emotional stableness you need…. Being hurt physically by the disease affects you emotionally just because the pain/sickness/change, so emotionally the love and bond from family helps…) so for me to say I will stay *knowing mom dad Andrew and add are away* is saying that I am READY to get my healing!!! That I understand this is my chance, and I want to take it even if it means it will be hard!

Dr. Comerford talked more and then he began talking about tests – what they do – how they do it – that he wanted to do them – so scheduling was next.
Here are the tests just that we know of today. I will tell what kind of test and what it will check for :

Dexa Scan – Tomorrow – there @ 10:15 – start 10:30 – Dexa Scan checks my bones. With Crohn’s, you WILL take steroids, you will take MANY steroids. Steroids are not good for the body because they break down the bones. He wants to check to see if there is any break down and to see if there is any damage from the steroids to my body.

Blood Work – Today – They accessed my MediPort and took the vials needed – I’m sure much much MORE blood will be taken while I’m staying here!

MRI – Tomorrow – there @ 2:00 – start 4:00 – He is doing this to check my digestive system. See if he will be able to tell anymore with this test….damage/breakdown

Colonoscopy – February 10th – 8:45 – All of you know what this procedure entails. This is the procedure that diagnoses Crohn’s!

Endoscopy – February 10th – follows with Colonoscopy – This procedure inserts scope through mouth to see into stomach and small intestine.

Follow – Up Consultation – February 24 – We will figure out what is next. Figure out what other measures need to be taken. Just listen to the doctor and get help pretty much!

After seeing the doctor we had to schedule all the appointments. Mom cried because she was sad that they would be leaving and me staying for the tests. They will come back up, but I’m staying to keep rest and not wear out going back and forth. Also in case they need any more quick tests like blood, etc. while I’m here. After we scheduled appointments, we had to do a pre-consultation for the colonscopy and endoscopy with the nurse.

We then moved from the digestive disease department to the Pre-Operative Department. They needed to access my MediPort and also they needed to have a Pre- consultation about the anesthesia part of the colonoscopy and endoscopy with My Family and I. So that took a long time. The nurse had to access my port twice. She missed it first time.

Everything was just nice and everyone was so empathetic and nice as well! I’ve never seen a hospital as big as this one! It’s absolutely beautiful! It’s big and spacey, it’s clean, it has character, the people are compassionate, everything is laid out so well….it’s just amazing!
So after Doctor was seen, after all the scheduling, after the pre-procedure consultation, blood work, anesthesia consultation, all that, we headed out and headed home!

It is bittersweet as with every big and important thing in life. I’m sad that I will be gone from all that I love so much! But then I am excited for all that is in store for my health and staying here! I know being away and concentrating on getting better and MUSC will be best for me. I can rest here and Grandma and Papa will take care of me. I am just indescribable right now. I’m looking so forward to all.
The Doctor had asked me…”What most do you want back?” I had already actually thought of this question before, so upon the question I was extremely overcome with emotions as I answered “I want to be able to eat again. To be able to enjoy the food I CAN have…to be able to taste good, to be able to actually WANT to eat…get the appetite back…be without nausea while eating. I needed my energy back. I need to be able to do my activities of daily living without feeling exhausted and overwhelmed.


Like TODAY – Its 7:15 now writing this, and my eyes are closing as I’m typing. So there may be lots of errors because I’m so sleepy and exhausted writing all this out. If parts don’t make sense I’m sorry. I just felt led to write all this to the best I could to inform you all of everything. You all have stood by my side, prayed me through this, and encouraged me at all times…your love has meant more than you know and you deserve to be a part of each step taken! I love you all and can’t thank you enough!

As for phone calls. You are more than welcome to call. If I don’t answer just know that either I could be sick, sleeping, exhausted, at an appointment….my intentions to speak to you are there…it just not might be the exact time of the call. I promise if you leave a message I will get back to you eventually!

Thank you all so so much! I love you!


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  2. It is always difficult being away from the people you love, but you should know that there are plenty of people here who love you as well, and we are all praying for you and here if you need anything. -Jim

  3. As I read your post I just had to find a way to get into contact with you. While I do not have a clue what you are going through, my twin sister, was dignosed with UC in 2008. She was 20. She is currently still flaring due to a flu shot she took in 2009! I would really love to know more about the doctor you are going to see. My goal is to find a way to get her back to the person she was! I pray that God is with you through this journey, I know by watching my sister it is not easy! May God Bless You and be with the doctor over the next month. I will be praying for you!