So the pictures I am going to post...People always tell me "Oh you look so good" this and that, that and this. I know they mean it, but its hard when they say that and you don't feel it. Another thing is when people tell me my hair looks good, yet I know I have bald patches everywhere. So for myself to let it out...*can't believe I'm doing this*...I'm going to post four pictures...when I blow dry my hair (excuse me...when Andrew or my Mom does)...you can see the balding very badly since the hair little bit of hair I have is blowing around. While in the mirror with the blow dryer...I was like take a picture Allison... Post it, and let it out. Show others but most of all just post it so that you can let it out! So that is what I am doing!
The back of my head is not as bald as the front and sides of my head. I know this sounds odd, but sometimes I have so much pain in my scalp. You can actually feel pain where your hair follicles are...it is a burning sensations all over your scalp...and then the next day it will come out in patches. when I take a shower is when I am able to brush through my hair with my fingers and get rid of the fallen hair. Not the same amount comes out every day...some days barely any, some days a palm full.
Now for the news!
Facebook status: "
A little about my last blog post:
"As many of you know....and as I have written a billion times before...the two blood tests that you can check to see if the Crohn's is in control or not is a Sed Rate and a C Reactive Protein. Like I have written before as well, these tests can be FALSE for Crohn's patients. You can be in a flare and the labs normal. Rodriguez had told us about this in the beginning. If I'm not mistaken also...when I had my colonoscopy and was all nasty inside and diagnosed with Crohn's...my labs were normal. But then again, my numbers have always been normal when it comes to those labs! What I'm trying to say is both of these labs with Crohn's can be very FALSE...so you can never judge where you are with your Crohn's by these two tests.
Well...the problem is we need these tests to be elevated so that we can get my treatments either 1. moved from 8 weeks to 6 weeks, or 2. changed from 5mg/kg to 10mg/kg, or 3. BOTH!
Now I will say that Rodriguez has been busting his butt to get my Remicade treatments increased and cut back, but insurance will NOT let him because they want to see labs!
Mom brought all of this up again to him and got emotional...she told him how Mrs. Sharon's son (people we know) literally almost died from the Crohn's (just never got better and kept getting worse - like myself) and finally his labs increased and they were able to change the treatments...since then he has been a new child! When his mom talks about it, it will make you cry. She literally thought she was going to see her child die...and then when the treatments changed, she said it was like night and day difference! He lives a normal life now! So mom truly believes if we change mine, I will get better! Rodriguez went over it with her again, and we all got frustrated!
He said, "I know she is sick, that she isn't better, that her Crohn's is not controlled, that her signs and symptoms show she is not better." He then said "and I'm the doctor knowing all of this...but it doesn't matter..." then he went on to say...The thing is you have your insurance people sitting behind computers looking at numbers wanting them to be elevated...if they are not then it's not good enough and they will not allow (or pass/ok) the doctor to change dosage or frequency." So then mom got upset at insurance!
After he left the room I just sat there and looked at mom. I was like you know what this is....a BIG vicious cycle! The infamous lines "You are very sick, oh wait, there is nothing we can do for you."
So all of that is from the previous post! Also in the previous post, I had asked all that read to PLEASE pray for my C-Reactive test and Sed-Rate test to be ABNORMAL so we could get the treatment (chemo) dosage raised from the 5mg/kg to 10mg/kg.
Well the other day, I was flipping through the channels and something told me to stop on Mystery Diagnosis. Of course I didn't want to, because I'm tired of seeing other people's long stories get figured out. Of course I am happy for these people, it's just hard for me to watch their happy ending, when my own story seems to just be the "never-ending" one. If anything I have learned from this disease/sickness... - I don't want ANYONE to suffer with a disease,, illness, disorder, sickness, etc...I don't want ANYONE to have to deal with pain and nausea daily, fatigue, restlessness, etc...
It hurts me right now that so many suffer in this world today. I want to be here with my family and friends, but after dealing with suffering like this for so long, it brings you to the point where you want to be in Heaven with your Savior...in your new glorified body.
So back to the show. I decided I would listen to this feeling. Low and behold it was a nurse...a nurse who had ALL the same signs and symptoms I have/had, all the same tests/procedures, many of the same specialists...it was unreal. In my head I was thinking, she definitely has Crohn's Disease along with another Autoimmune Disease. Next thing I know, Mom is watching, Dad is watching, and I'm getting emotional watching. I mean this lady on tv was telling what she felt physically, what she felt emotionally...and it was like watching myself.
The show ends with her having the diagnosis of Adult Onset Stills Disease - something my neurologist and I have talked about often. There is no test to diagnose this disease, so we still think this dx is a possibility. You literally diagnose the disease based off of clinical observations. Ready for the treatment option for AOSD? Just take a guess? I will give you a hint....it's a type of Chemo-therapy. REMICADE TREATMENTS! *bum bum bummmmmm*
So the show ends and I'm like WONDERFUL! Remicade! After my sarcasm and anger wore off, my brain started turning and thinking. Then the wheels turned faster and I thought *well if we can get Hecker to diagnose me with the AOSD and Rodriguez already has me diagnosed with Crohn's...maybe we could get the Remicade dosage increased. With both diseases needing this treatment you would think you would need to increase its dosage. Also, Dr. Rodriguez has been wanting it increased...so this could work!
So then Mom and I get into a conversation about my treatments, insurance, and Dr. Rod. She finally asked, "Allison, do you think it would help if I called insurance and told them about you and your health...about how bad everything is, and how we NEED that 10mg/kg...MAYBE somehow it would help" I told her it wouldn't hurt, but didn't expect anything out of it. Surely if my doctor was calling and sending requests, and they weren't listening, what would make them want to listen to us.
Today - February 21, 2012
Well this morning I woke up. Little did I know what was going to happen today!
Mom had called insurance and had talked to them about my health and about my Remicade situation. Low and behold Insurance said THEY APPROVED the REMICADE INCREASE from 5MG/KG TO 10MG/KG and that this changed should have taken effect during THIS YEAR for sure.
Crazy! That means that I would have already had THREE CHEMOS with a HIGHER DOSAGE! so of course we are going....hmmm...what is going on?
Well Mom called Rodriguez's office and as always the front desk and nurses are idiots! (I don't mean this in an ugly way, just the God's honest truth). So mom talked to the nurse and explained what was going on. The nurse then typed up a message to send to Dr. Rodriguez and at the end wrote to call us. Well, no call from Rodriguez, but a call from the nurse again. This nurse had the NERVE to tell my mother that she told Dr. Rodriguez everything...that Dr. Rodriguez said the Remicade would not be increased til another COLONOSCOPY WAS PERFORMED!!?!
YOU ARE KIDDING ME! HOW MANY TIMES DO I NEED A TO BE STUCK UP MY BOWELS! I THINK I HAVE HAD ENOUGH! (that was my fun vent sentence :) )
That is when I got mad and grabbed the phone from Mom. I immediately let the Nurse know I was a Nurse and that I wasn't playing. That Rodriguez was on OUR side...that HE WANTED the Remicade dosage increased and had been fighting some time to get it changed! I also explained to her about my visits with him. (the post before) So...I tell the Nurse as nicely as I can that I don't want to talk to her...I want to talk to Dr. Rodriguez. She held on a little while longer and she started going through my file...she and I were jibber jabbering and immediately she went silent. I knew that she had found something. After she went silent she said...I am going to page Dr. Rodriguez and tell him to call...he will get back with you. *Phone click*
So.....the day drug on. Andrew and I went to look at land...I stuffed my face with Phenergan and Percocets from the nausea that has persisted for 4 days and the pain that is never ending.
Wait. Wait. Wait. That's what we were doing! That's what we all do when waiting for those return calls!
Andrew then decided that since we hadn't eaten all day (and I sure don't know when to eat because I have no urge), that we needed to go get something. So we go get some food and sit down. The phone rings and it is Mom.
Mom said "Dr. Rodriguez called. He informed me that he was not avoiding calling and was not wanting to do another colonoscopy...he was wanting to go back through your charts. He said that it literally took him that long to go through all of yours. He found where Insurance increased your Remicade in August of 2011! He didn't understand how it had gotten overlooked...and is trying to figure out where somebody failed/messed-up. He asked when your next treatment was....so I told him in a few weeks. He said that he would call Curascripts (the company that ships my chemo) and have EVERYTHING straightened out by your March treatment!"
I just started BAWLING....I couldn't even say the blessing over my food (nor could Andrew)! Andrew just held me and I cried...he teared up...and we just felt so very BLESSED! Now sure, I don't know whether the 10 mg/kg will make a difference, but I have put so much faith in that it WILL! Now I have been telling you all that I am at my last option and I am with medications....when we raise this to the 10mg/kg...we will be at the end of every option for Remicade.
Now with the Chemo being increased that means the chemo will be more potent. This next treatment will be very rough on me and I will have more anaphylaxis than usual, but I am READY!
I asked yall to pray on my last post for abnormal test results....well we got even better! The Lord performed another miracle! You tell me how a doctor and ALL of his nurses miss a NEW ORDER APPROVAL from an INSURANCE company! MIRACLE! People talk about the Lord healing people, how that is a miracle....we have to look at everything around us! There are miracles all around us! He is STILL the God who PERFORMS MIRACLES!
I know for some of you reading, you may not understand why I am so overjoyed, overwhelmed, and humbled. Just know that when you are at the end up your rope with your health and you have one little option left and you are reaching at it with all of your heart.......well when you grab a hold of it....it is indescribable!
I know that with the dosage being increased, it makes my treatments that much more serious. I just can't help but think this may be it. This may be the one thing to stop the sweats, stop the nausea, stop the pain, make me "me" again! I have so much faith right now....it is definitely not a mustard seed...more like an avocado seed!
I cannot thank you all enough! Thank you for praying what to others may seem like an odd request. Thank you for reading and knowing where I am at. Thank you for your support and love!
Like I said...some people may not understand why I am happy to get my chemo increased....I guess in reality you don't have to understand. Just know that God is an Awesome God! He ALWAYS provides at the perfect time! I love you all and thank you from the bottom of my heart for all you do!
I am praying that with this increased dosage I get some remission time from Crohn's! We had thought that Remission was a no no word for me....I'm going to think that isn't so! :)
Ready for all that the Lord has in store! If it is that this dosage doesn't work, I will STILL TRUST in HIM! If it is that this dosage does work, watch out world...remission Alli is on the loose!