So I told all of you this was coming. I'm sorry that I have to bunch so much up together, but between being in hospital, doctor visits, treatments, flush...whatever...I am pulled every which way! Ok...so the last time I told you of all the blood work they drew....here is update from that and everything else...
Wednesday August 18, 2010
Dr. Rodriguez calls. I had called prior to that and told Michelle that I still was not feeling well. Still hurting...stomach pains still bad,joint pains still bad, going to bathroom more, wanting to throw up food...yadda yadda. Well Dr. Rodriguez called later...maybe around like 4:30. So first is first. Rheumatoid and Scleroderma...EVERYTHING came back NEGATIVE! Now to most people they would say praise the Lord...not in my case! We were wanting to find something so we could treat it...something is not allowing my Crohn's to get better...or gosh we WANT to think that...I hope my case is just not this bad and to the point of almost untreatable!
Ok...so point is he calls and I get upset...so coninuing
I was like "Dr. Rodriguez...you mean to tell my my back pain, my knee pain...all of my joint pain...hip pop out...everything IS from the Crohn's?" *I had built it in my head finally that maybe it wasn't all the Crohn's* He answered back saying "I'm afraid at this point I have to say so." Well he could tell I got more upset and I told him "I just don't know anymore..." He came back and said "Well how do you think I feel Allison...I'm your doctor...I feel like I'm failing you as a doctor." I cried some and said "No Dr. Rodriguez! you are not and if anything it isn't just you I have a bunch of doctors on my case." I told him I just felt like giving up and he said "No...you have to keep hope." He then told me of two more tests that he wanted to try...
One - Lactose Intolerant Test
Two - Bacteria Overgrowth Test
Next day would be Thursday the 19th. Now this would be the day I should be getting my treatment with the double dose...that Thursday marked 6 weeks...but lovely insurance had not approved so I didn't get it...(nor have I this week)...so I guess it will be 8 STILL even though IT HAS BEEN ORDERED to 6 weeks 10 mg/kg. I also mentioned something about the treatment change on the phone to Dr. Rodriguez and he assured that he had sent the order in.
So Mrs. Rene called (Thursday) and said she was going to come see me at the store! I was hoping that she had got the order, but she didn't. So she came to the store and told me not the best news. (I love you Mrs. Rene) Well...I will try to make this short. In short words, my insurance who had complained in the first place that the treatments HAD TO BE AT HOME OR IN AN INFUSION CLINIC...are NOT paying the home health visit fee fully...so Mrs. Rene said that due to the not cooperating (which is how insurance is no matter what) I would have to come to the hospital to have my treatments. I immediately started bawling like a baby and she held me (thank you Mrs. Rene). The whole point of the treatments at home is to keep me comfortable, stress free, and just I don't know...it is better for a person physically, emotionally, mentally. So being upset, I told her I wanted to give up..and as always she told me I couldn't. I then told her I was quitting my treatments LOL! (I look back and laugh which I still say it now) and she gave me her look and said "Do you want to die"? I'm laughing typing this part but at the time I was sobbing like a 2 month old... so we talked and she held and prayed with me. Well she doesn't know the after math and I wasn't going to tell her but she will read this and whoop my butt at my treatment this coming up week :)....
After she left was another story...I had gotten SO UPSET...that my lovely disease went full force...I started dry heaving...I then calmed down. Well I walked back up front to the store where mom was and started talking about it again...about that time Andrew's dad walks through the door, Mrs. Candy, and Mrs. Joy were there and I LOST IT!!! I started bawling again and Mr. Bob came and hugged me and told me we were going to get through it. I then had worked myself up so much that I ran to the bathroom...from there I dry heaved until I ended up throwing up my guts...I thought I was ok...well Papa Bear (Mr. Bob -Andrew's Dad) didn't leave and was waiting on me to get out...he had a cold rag ready and was holding it to my face and holding my body to stop shaking.
Well it was close to closing up. Mom and I closed up...went to the house and I felt so terrible! I was nauseated to the point I didn't want to move. I was FREEZING!!!! but temperature wise was as hot as a furnace. I had to use the restroom so I scooted to there...after I looked in the mirror...I had red dots all over my face, neck, and chest...well I immediately got alarmed and showed mom. About this time the stabbing pains were becoming unnoticeable and I layed on the couch again. About 20 minutes into fighting I told mom we HAD TO GO TO THE ER! I knew I couldn't make it to Mobile so we just went to Jackson...if someone I don't like would have been in there I was ready to punch them and leave...but thank my HEAVENLY FATHER ABOVE WHO WATCHES OVER ME NO MATTER WHAT....DR. FAGBONGBE WAS THERE!!!!!!!!
All of you know that I worked very very closely with him...I cannot count how many babies we delivered together and how many patients we took care of together. He was always the one to lift me up and understand my situation. He always had the compassion and was the one who helped push for my mediport! God bless that man!
Well mom registered me and saw that he was on call...well when she came through the door she said look and I turned and it was him...I immediately start bawling again and he motioned for me to come and he just hugged me and said he would get to me. Well I have Crohn's and when it comes to triage I come last...so we waited a good while. Well we get back to the room and I was dying in pain...didn't let anyone know I was there because didn't want to stay or plan on staying so waste of time.
My nurse was absolutely precious and so sensitive to my disease. Her daughter as well suffers with an autoimmune disease and knows all the baggage carried with them. We had to access port twice because the half inch wasn't getting it this time...that made me sad because Mrs. Rene and I always brag on my port and now it is just being a handful...I will get her to fix it up though (right Mrs. Rene :)?). So I won't go into all the details of what was said or happened...Dr. Fagbongbe just told me I was going to have to start controlling my emotions. I have explained Crohn's being an INFLAMMATORY DISEASE! That means one upset and its like lighting a huge firework. Oh and the red dots...I had petechiae. That is when your capillaries literally hemmorahage due to extreme strain (like throwing up which I did and hard crying which I also did). I'm shaking typing this because it is getting so aggravated recalling all of this to memory that its just making it sick. I told him about the week and all the bad news, and the insurance crap and just told him I was trying to control my emotions but I had so much bad news prior. Well he was so sweet and helped me...
He gave me a 1000 ml banana bag (lots of vitamins in fluid), phenergan through drip, pepcid push, zofran push, and demerol push! About 20 minutes in I felt the demerol kick and my pain eased pretty well! I of course was highly sedated just because, but the pain wasn't dulled all the way!
So he came in later and asked what I wanted to do! Kelly you know how I am...I said GO HOME!!!!!! (girl you know how it is in hospitals...no fun!)I then said something about load up demerol and he just laughed and said I had already had 75....what you all don't understand is that Crohn's pain is a haunting pain...that is why you are supposed to stay and not leave...once the effect wears off...the pain is back. So I just toughed on my one dose and left and came home around 1 am. Well 3 am back up with pain and nausea. Took some pills and back to bed. Went to work the next morning because I AM INSANE! LOL!
Weekend went by...my house, Drew's house...he takes such good care of me...Sunday night he comes over to spend the night because MONDAY = 4 HOUR TEST DAY!!!!
So Andrew and I wake up yesterday morning at 5 AM!!!! My test began at 8...go to the hospital to the room and I get to drink the NASTY NASTY STUFF CALLED PURE LACTOSE SUGAR!!!!! Imagine Pedialyte mixed with Chlorine water mixed with salt water and sugar....oh gosh...nauseated just typing it. Well most of you know I couldn't eat drink after 12 prior and couldn't eat drink brush teeth no pills all that day til the 4 hours were completed. Well I was nauseated and hurting already so I was like how in the heck will I get this down.
My sweet little Andrew was sitting beside me cheering me on. I told Michelle..."I'm gonna throw it up" She didn't like that and said we would have to start ALL OVER! Well somehow I chugged that crap down and it started coming up...Andrew was cheering me and I kept gagging...finally I convinced my stomach to keep it...
So every hour we had to come back and blow in a bag to check if the hydrogen would go up...NEVER DID!!!!! I told all of you that we can trace back my crohn's disease to 3 years old. I would know if I was lactose intolerant or not by now so I knew the test would come negative.
At this time though...if you drew blood and told me I was an alien I would say Hallelujah just because we found something!!!!!! Smurf, Smiegel...I don't care...just help me with something to help the crohn's.
Well...11 go across to Dr. Rider. Spent forever in there...got upset because I had to talk to a STUPID RESIDENT! He kept asking about my butt pain and I was like "SIR...MY BUTT PAIN AND ANUS PAIN IS NOT THAT BAD...IT IS NUMB COMPARED TO MY STOMACH PAIN!!!" I don't know how many times I had to say that before he got the dumb point. Well when Rider finally came in...I was already mad talking to Mr. Russian Resident. I told Rider that I was tired of explaining my horrid disease to everyone! LOL I was on one y'all! LOL! I'm telling you...after being pushed here and there you get gutsy! :) Well Dr. Rider prescribed me my dilaudid after being there forever and a day and I blew in my bag (poor andrew had to run back to the hospital to get the bag to blow in because I was stuck at riders...he is so good to me) so we leave Rider and take the bag back to Rodriguez's office...NEGATIVE AGAIN!!!!
So when I walk in I hand the bag and was flamed up...Michelle asked what was wrong and I told her. She said that she was going to call Dr. Rod and tell him results. I started crying and asked her "What are we going to do?" and asked if there was anymore tests besides the bacterial overgrowth left...she just shrugged and said "I really don't know Allison...I think he is trying to pull straws right now with you..but at least he isn't giving up." I came back and said I am...
So she called me after we left saying Rodriguez wanted appointment for the Overgrowth test so PLEASE EVERYONE PLEASE PRAY FOR THIS ONE!!!! WE NEED A POSITIVE! CRAZY PRAYER REQUEST BUT WE NEED SOMETHING! It would definitely be feasible with the abdominal swelling and nausea...and so on.
After this I was down and just talked to Andrew. I called Jamie and vented to her as well! (thank you Jamie :) I love you). Andrew asked what would make me happy and I told him "Owl Earrings" Well we went to the mall and by goodness we found me some owl earrings and I was a happy little girl. We got a pretzel, walked around, and just spent fun couple time together! He made me laugh and got my mind off everything!
Well after that we headed to Mobile Infimary...I got to see Mr. Walt (my bebop)! He really couldn't say much but I talked to him and told him I loved him. We then went to the waiting room and stayed with Mrs. Shirley for a few hours and prayed with her.
After - movie that stressed me out LOL nail biter - and dinner...(you don't want to know this but I told Andrew I was eating the most buttered up thing so I would wipe my tummy clean of the lactose junk - well lets just say it worked :) ) Dear goodness you all...I am getting way too personal! HAH! Ok...this is fun though!
After dinner we went by Michael's and bought my future little niece some letters and the paint so I could paint her signet to match her bedding. After that we headed back to Mobile Infirmary to visit Mr. Gary! (Brianna's daddy - Momma Pickards hubby)! Andrew and I didn't have time when we went to see Mr. Walt so we just made another trip. We got to spend a good few hours with him and catch up on him. He was so sweet and even asked about me. I got teary with him...I'm just a little emotion ball right now. Andrew and I had the privilege to pray for him and then we left to give him so rest! Then my tired tired angel and my crazy emotional EXHAUSTED self headed to Jackson. I told him that I had enjoyed our day so much!
See...the day did SUCK! but after getting to pray with Mrs. Shirley and be there for her and Mr. Walt and visit Mr. Gary and fellowship and pray with him...God had already turned my day from yucky to BLESSING! God is so good! So a big thank you to everyone who contributed to the day change. I mean it still didn't change the fact of my bad news, but just getting to be with other Christians going through hard times just helps you fight harder.
When Andrew and I were praying with Mr. Gary I just let God have with it...and he gave me words to pray about Satan attacking all of us believers...and how he was bringing the tribulations and trials through illness and sickness...we rebuked Satan and his evil plans to destroy our health and lives...we told God that we knew He WAS AND IS GREATER! and has plans no matter what!
So...today - chronic fatigue...super tired after writing this, but you all deserve to know because you all are part that keeps me going whether you know it or not. Your prayers, your reading of these words to know specifics to pray, your words of encouragement, your friendships, your love, your compassion, your honesty...I could go on and on! Just know that each of you reading this are a huge part of my fight and I need you more than you know!!!!
I love you all and please please be praying that when we set up this test it will come back positive! This test will be 3 hours and with this I cannot leave so I will have to stay in the clinic at the hospital for the full 3 hours! Also...my first visit to see the pain management doctor is coming this Monday! I had a BUTTLOAD of paper work to fill out, but I am excited because I know the doctor will be able to help me with pain that is never ceasing it seems!
I know this was confusing and I'm sorry...Just so much! over so much time!