Dr. Why?

So today I had another big infusion after senior breakfast(which is a big get together fellowship thing with all the seniors and their parents and we eat and yeah).

My face looks so chubby; gotta love that prednisone!

Anyways, yesterday we tried to get an appointment with a GI that sees adults that I've heard good things about that's in the same group as my Rheum only to find out today that we got an appointment with a GI today, right after my infusion, who is in the same group as my Rheum but not the doctor I wanted to see. I got the guy that I've heard bad wasn't so great. Oh Joy.

In the mean time my mom finally got a call back from my GI specialist in Gardendale after we left messages saying that my not only did my Rheum not admit me yesterday like he asked him to because of my low immune system but he also put me on freaky high prednisone infusions at a place that was not....sterile to say the least(trying to abide by HIPPA y'all). My GI was not happy with him for not following directions but it was too late.

We met the new local GI in the same group with my Rheum and my first impression went as followed: he marched in the room, slung his clipboard on the table(the bed looking thing you lay on) and plopped into the chair and quickly spewed out questions without missing a beat. The questions weren't as accusing like other mean doctors do. I guess he at least has some sense that it's not my fault not all of my doctors can agree on meds and which ones will put me in remission. He threw meaningless jabs & random questions at me to the effect of "What year and date where you DX? Why did you take that medicine? Do you even know what meds you are on?" and I threw the jabs back with my quick accurate responses. He simmyed down after that and didn't relay any eye contact. It all went so quick it was like he had a set amount of questions in his mind to ask and didn't let me ask any myself. Basically what happened is he stated: Assuming your DX is correct, and you are flaring and have yet to get in remission and from what you are telling me about your disease location we can put you on Imuran/6 MP. If you are still feeling bad in a few weeks even on steroids I can scope you but there's no telling how skewed the results can be. If you do have a lot of scarring and ulceration in the small bowel then you probably need to get surgery so we can start over. If I scope you and you are in remission that doesn't mean you don't have Crohn's it just means you have another problem.

So basically he had all these ideas that he didn't put into action and he didn't and neither did ANY of my doctors set up a long lasting plan if I still continue to have problems other than "Call the office" crap that, as I've come to know us a cop out of "I really don't care at this moment come back when your on your death bed."

I'm just so emotionally drained from all these doctor's appointments. I just wish I had a small set of doctors in the same practice which is what we tried to do today but the GI acted like he has never talked to my Rheum before. I just want a doctor compassionate like my GI doctor in Birmingham(and his personality), who is well respected(like my old GI) and who has some sort of plan(like my rheum) & who doesn't accuse me of being a pill popping drug seeker. I haven't had a script for pain meds since my post hospital stay 2 freaking years ago. I'm so tired and drained and I'm just ready for someone to save me. God can only do so much from afar & I don't know. After barreling this crap for 5 years you wander if God has already used your life allowance of miracles.

I just really want to cry and eat a lot of junk food and call Dr. King and sleep until I wake up and I'm not throwing up, nauseated, crapping 10x a day, having severe joint pains and OH GOD the pain. 

Why does this all have to happen my senior year?

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