I finally have a good Gastroenterologist!

This afternoon I met my new GI & I am VERY impressed with him. He was very compassionate and listened to everything I had to say and even joked around with me by asking questions like:

"Do you smoke?"

-No sir

"Good it's bad for Crohn's. How about smoke?"

-No sir.

"Well I don't mind if you have a drink every once in a while. Obviously not now but when you're better"

Lol

He talked out with me about all the treatment options I have left and gave me a lot of hope. He said he's involved in a new clinical trial that I'm a candidate for when I'm a little older. The game plan is to start me on IV antibiotics(Flagyl/Cipro)and to gradually reduce my IV steroids. He also wants to start me on Imuran & Pentasa in combination with my other meds. 

Tomorrow he wants to do a flex sigmoidoscopy and then after that we'll do my Cimzia shot. He promised to try his hardest to get me out of the hospital by Tuesday because that's when we leave for the beach and go to Panama City for Spring Break. 

My experience at this hospital has been really good. The nurses are a lot nicer and the GI was very compassionate and determined to get me off these steroids and better for once and for all. Thank you for all the prayers! God is so good :)

3/25-3/26

Yesterday I finally got my midline placed! It was very easy and I was awake during the procedure. It goes from my biceps to my chest so it was a long needle. The central line nurse(Yes, only one in the whole hospital) said that this is my only good vein I have left so I called her at a good time. We are now discussing getting a port.

Today I met with my GI, who is now the on call GI. He said that he's no longer worried about the colonoscopy because it's pretty evident I'm flaring & I'm not going to keep the prep down. He wants to raise my dose of IV steroids and try to get me better enough to eat regular food. He even discussed sending me to Oschner's or UAB and see if they have any advice as to how I can get off and stay off the prednisone because no medicine is working. Of course surgery is on the table but I'm trying to avoid that all costs because often times one resection leads to another resection at the place they just sewed back the intestines and it's just a cycle. All I know is I'm fed up with being in so much pain and dealing with all this nausea and being tossed from hospital to hospital because no one knows how to fix me. I'm not hopeless but I'm getting there. I just want to be able to enjoy the rest of my senior year without any more interruption from my health. Did I mention prom is like in a week and half and my cheeks look like chipmunks? Yeah. 

But anyways, enough ranting. Please pray for me, doctors and for my family to have patience, understanding, and wisdom. Thank you to everyone who has visited me in the hospital lately. Y'all are the best.

To the sufferers and the supporters

Dear Little Fighter, 

There comes a time, actually a lot of times, when you're just so worn down from battling something(whether it be a chronic disease or whatever trial)that you just have to break down and stop lying to yourself and everyone & admit you are breaking. You aren't strong enough to get out of bed. You aren't strong enough to stop crying. You aren't strong enough to handle the pain by yourself. And it sucks. It really really sucks. And that's okay I think. Everyone keeps telling me it's going to get better but the truth is it may not. No one knows. And I think it's okay to say "Life sucks a lot right now." Just please realize that you don't have to be strong enough. And it's totally okay to be absent from God. It's so okay to ignore him for a day or two but you need to know that he is the only one going to be there for you at all times and he loves you and he cares for you more than anyone. You have made it this far and I am so proud of you.

Dear friends & family of the Chronic Illness Community,

Most people don't know what to do when they have a friend who is battling a really hard trial. They usually just give them space and that's actually the worse thing you can do. Some days I need my space but when I'm just really knocked down hard by life I just want someone to realize that what I really want is someone to step up to the plate and give me a big hug and just let me vent. Throw a sleepover. Ask them to hang out in a comfortable setting. Get some ice cream and watch Gossip Girl on Netflix. Just do something so they don't feel so alone. Because although I have family and a handful of friends who are always there, most people are not. And I realize it's really hard to have a friend who is chronically ill. I know it is. I couldn't imagine. But you really are breaking their heart when your only there for the good times and not the bad. We just want a constant in our life and we depend on friends and family to be that constant. I'm just giving advice because I know most of y'all don't know what to say when I'm in the hospital or absent from school for days at a time. Please take it and meditate on it. Please. 

I love all of you & am so so so grateful for your love and support. You will always have a friend in me. Once you're in my life, you will always be in my heart. 

Big overdue update

Hello everyone, I hope you all had a great weekend! I have a big health update and a big spiritual update so I'll start with the most important update.

At church camp on August 1, my little brother got saved! I am very proud of his big decision to join our heavenly family! It feels good going to sleep at night knowing that I don't have to fear that I won't be with him for eternity. I got saved a while back the summer of before 8th grade at a mission trip. Since then my walk with God has been rocky but at the end of the day my relationship has grown above and beyond what I ever imagined. The thing is though when I got saved I didn't get baptized. I never understood the point of it. Is it not enough to say I'm a christian and act like it? To this day I don't completely understand it other than it being a public profession of faith. I think that's something I'll never truly understand until I do some intense over due studying. Anyways, back to the point. As a family we all decided(with the exception of my father) to attend a big church event that only comes once a year called "Baptism at the beach" we all officially joined my church(again with the exception of my father because he's been part of the church longer than us) and got baptized! I feel weird. Like a huge weight is lifted off my shoulder. I've waited so long. I got saved a few months before all my health drama began and I hate to use that as an excuse for not getting baptized immediately but I really think the reason why I didn't was because no one explained to me what baptism meant and how big of a deal it was. Heck, I'm baptist! Either way, I'm glad it's over and done with.

On another, weird, note here's an update on my health. 

Last time I left off I was weary & a tad indifferent and that's how I still feel. I have a date at the mayo clinic for September 24! It's so real and it makes me so nervous. This is literally the final step. If anyone can help me it's these guys. Truthfully I'm scared for a number reasons. What if they make me have surgery? What if they take me off medicine and I get sicker? What if? It just makes me anxious thinking about it. I'm trying to avoid thinking about it in hopes it will go away but I know it won't. After I found out about the Mayo Clinic we went to see my gynecologist to update him about all my Crohn's related issues and hospital issues. My mom did some research and wanted to discuss other potential diseases that could be causing my pain in addition to Crohn's. She thinks I have Endometriosis because every time I flare I'm either on or about to start my period. My periods are always irregular, I've always had vaginal involvement with my Crohn's and I could go on and on about reasons why but it's kind of awkward blogging about this so I'll leave it at that Hahahaha. There's also the possibility of intestinal endometriosis which can occur in the ileum and rectum which is where a lot of my symptoms are. After talking to him he agreed that it's a possibility so I am getting surgery to check for it on September 12(or 13 I forgot). I will have a preop ultrasound & doctor's appointment the week before and a post op ultrasound the week after. He will be checking my reproductive system and if Mayo clinic wants to, they can check my intestines. So I will be getting my post op ultrasound literally 3 days before I leave for the mayo clinic. It's crazy timing and we'll be cutting it close but it will be good to have a definite "yes" or "no". 

That's it for now; stay tuned for the next episode of my journey. To get daily updates follow me on twitter @Curlycrohnie or "like" my Facebook page Queen of Crohn's

God is good all the time!

This is really random but I feel like God has really blessed me throughout this journey with my Crohn's Disease. I may not always know why bad things happen to me but eventually God reveals to me the meaning behind my suffering.

I'm adopted. If you know me personally this isn't a shocker. My parents adopted me at the age of 18 months after they were only married for two months. My biological mother knew she couldn't give me financially what my adoptive parents could so she made the brave decision to give me to my birth parents. Do you think it's a coincidence that I just so happen to have a diseases that requires a lot of money to maintain with expensive medications and alternative therapies? I think not. One time my mom had a revelation moment in church when she just balked because she realized God put me in their life for a reason. God IS good. All. The. Time.

In 8th grade I met Dr. S a rheumatologist because after my stay at the hospital to remove my gallbladder because I woke up with horrible joint pains after surgery. He didn't help originally but soon my joint pains went away for a few months. & I didn't need him anymore. Then I had my first real symptomatic Crohn's flare my freshman year of high school. The joint pains came back and I revisited Dr. Sc. Now we know those joint pains and that gallbladder problem were related to my Crohn's.

When I was jumping through hoops to get a DX and to find a doctor who believed me and who would actually care enough to DX me I asked God to show me a rainbow before meeting the GI that would DX me and I also asked for him to be sarcastic and just understand my personality. Literally that same day I was released from the hospital and was on my way to meet my current main GI Dr. King and I saw a rainbow. I met him at his office and we just clicked. He DX me within two months with Crohn's Disease. I literally love that man to death. He is funny and sarcastic and just an amazing man. I recommend him to everyone! He was a god send. I pray for him all the time as well as his family. He really means a lot to my family & I. Okay done gloating. He may see this and I don't want him to get a big head ;) 

I also met a Dr. last summer when I was in the hospital down here locally and couldn't make it to B-ham to see Dr. King. I saw him as a baby because I had "IBS"(now we know it was Crohn's the whole time) but he left for years and came back to my hometown coincide tally the same summer I got admitted to the hospital. He helped immensely and although we recently fired him from being my Dr. because he overstepped his boundaries by being accusative and just plain mean he did help when I needed him. God knew I needed him in my life for a set amount of time. He got him out of my path for a reason that I may not know till a latter date.

Mrs. Anderson. I had a teacher my freshman year of high school whose personality fit mine like a glove. I have never met a person who just got my sarcasm other than my family. She was going through personal struggles and God laid her on my heart to reach out and support her. Little did I know a few months later she would be supporting me more than I could fathom helping her. She was(still is)like a mother figure to me as well as a friend to me when my first Crohn's symptoms appeared. She supported me through my journey to get a DX and visited me in the hospital when I was still largely unDX. God knew I needed someone to minister me because God knows I doubted my faith many times during that period of time.

Mrs. Crutchfield was my History teacher my junior year of high school. She is just so weird and precious and I just ADORE her. I just so happened to of had her as a teacher her last year teaching at my school before moving. She is a cancer survivor and was very sensitive to my personal lacking a and failures due to but not limited to my Crohn's Disease. She inspires me to keep the good fight. She was recently DX with cancer again around the same time as my flare up of my flare up that I'm currently enduring and she just handles it with such grace and courage! She makes me realize it could be so much worse. She came into my life when I needed her most and God knew she would touch my life in a way no other person has.

I mostly posted this for me to realize just a few of many people God has blessed me with. Goodnight y'all and I hope you have a great day at church tomorrow. 

Peace & love

-E.

I don't want to be the sick girl anymore but everyone expects a never ending performance.

I'm just tired of being sick even though that's what I seem to do best. I want to wake up and think "I'm going to have dinner friends" and then go have dinner with friends. Not just that, no. I want to be able to have dinner with friends and then go to the movies afterwards and eat popcorn without a second thought. How can I do that when I can't even wake up and walk a few feet without withering in pain? There's so many walls to knock down with so little time. 

I guess you can tell it's been a bad day? Well, you'd be right to think so. I woke up from a miserable night with little sleep to only have endless diarrhea with a hint of blood. I was volunteering at a hospital and had to excuse myself constantly to poop. I'm not even embarrassed. I'm just frustrated. Then I come home only to enjoy joint pain in my knees and feet.

Oh and it'd be nice to have a nurse from a doctors office return a call every once in a while.

It's not fair. It's just not fair.

*insert life aint fair kiddo*