So I last left off with June 20. Well I had gotten out of the hospital that Thursday. Ever since then I have been having terrible problems which brings us up to now...so that makes it 2 weeks of "not goodness". (you will notice I make up a lot of words...I'm going to create the "Allison Dictionary :) )
Before I go into explaining all of the sickness...and catching you all up...I need to catch you up on one more thing. I began working at a gift shop named Gifts and Giggles when I was I think 17. Not too long after I started working there, I became the assistant manager and began monogramming. I worked at G&G all through the rest of high school, college, and even continued helping when I was working at the hospital. As you all know nursing has been cancelled due to my health. It was really hard at first...and I was would ask...really God? I knew that nursing was His will for my life, but He showed me that HE DOES have plans and wills for our lives, but that they change. Things never stay the same...it's part of life.
I am now at peace with leaving nursing behind. He gave me that peace. Also another fact of that is I either want to live or die. With me going back to nursing I'm putting my health at a high risk and putting myself and health in major jeopardy. So I thought about it and guess what...lol...I want to live!
So now back to G&G. This shop is like my second home. The owner Mrs. Becky (Rebecca Ramey) has become literally my second mom throughout all these years. To cut it short...I don't want to go on disability because I just don't. When God tells me to I will. So Mrs. Becky let me come back to the store. What's nice though is I monogram 99% of the time so I don't have to be right in the public with my lowered immune system. I can tuck away back in the room and monogram away. So I am at G&G and it makes me happy :) Working is working...I am proud of myself and thank God for allowing me to complete college, but as I said things change and so does God's will for your life.
Ok...so now catch up on illness. Let's just say from the 21 - 26 of June it was a lot of pain. My stomach either felt like someone was stabbing me repeatedly or that it was filled with a blazing fire. I ended up having to take oxycodones that I keep for when the pain gets unbearable.
27th - this week up to today- This was just a craze. That Monday I went to the bathroom 7 times...I don't know how that was possible because I didn't know that much could be in me...cutting it short again...just everyday I felt like I was dying. Pain continued severely....fatigue to the point it was a task to take a shower...weakness to the point I would sit in the shower...just all around I felt like I was slowly dying.
Ok...so during these two weeks you have seen where I have typed the word pain a lot. Well it has been unbearable. Monday was a holiday so everyone was off. This was one of the worst. Fatigue, weak...bathroom. All my bowels have been liquid so I hadn't been taking my miralax....well on this day it decided for some crazy reason it would impact. I was hurting so bad...I stayed on the toilet and I called the on call doctor. Prior to this I had called Dr. Rodriguez about six times. - that is six messages in a 2 weeks span with still no call - Call again...the people are like well it says that he has opened and received....that made me mad. So I call the on call doctor tell him the pain I'm in...that my pain meds are running low...which I knew it would do no good and I told the on call receptionist that. I was like its going to do no good and I have left six messages. So on call doctor did nothing for me except tell me to take one of my pills...I was like well duh I have already done that stupid. Still no call from Dr.Rodriguez. I have like 4 oxycodones left and I'm guarding them and not taking them in fear that a worst day will come and I need to save them.
Oh haha let me tell one more thing about this...the on call receptionist was like well try calling your primary care doctor for the pain meds....I was like MAM LISTEN...MY PRIMARY CROHN'S DOCTOR IS RODRIGUEZ...MY PRIMARY DOCTOR NOT FOR CROHNS DOESNT HAVE THE RIGHT TO BECAUSE THIS IS DEALING WITH CROHNS!!!! Then she was like well who prescribed it before....I was like Dr. Rider...that was after a surgery....I HAVE NOT HAD A RECENT SURGERY! Gosh...she was making me ill so then she said well that is all I can do and I said a wordy derd...which I didn't care at that point and hung up. 30 seconds after is when the on call doctor called...LOL!
Also...on the day where I was severely impacted...I ripped and damaged my fissure again so I started bleeding again from it and have terrible rectal pains ever since. I was thinking REALLY?!?! It got to the point mom and I went to CVS bought gloves and KY jelly and I told her I was going to nurse myself and do a digital fecal removal...I couldn't take it anymore...well I chugged miralax and I finally depacted...whatever you want to call it.
Yesterday - My Treatment. This was my fourth treatment. Now let me tell you the stressful story behind my treatment. Well for my first 3 treatments we were receiving them from an IV Infusion company. They mixed the Remicade and diluted it...they delivered it...they would bring a hand held pump so I could walk around if need be (which doesn't happen) and everything was taken care of. Mrs. Rene just had to take care of me and hooking me up.
WELL SINCE EVERYTHING HAS TO BE COMPLICATED NOW...my FOURTH TREATMENT CHANGED GROUPS. I got my Remicade through a stupid Pharmacy company this time which means they are treating my infusion like a prescription...all they sent was the Remicade in the vials...no pump....no dilution...no non-coring needle to access my port...NOTHING!!!!!!! Mrs. Rene was having to get supplies from the Home Health draw it up herself, dilute it, get a huber needle from the hospital, it was terrible. I felt so bad for her. Also...get this...we had to let the chemo run by gravity which is a little crazy...she is a genius though...she got a wire hanger bent it and hung it on a nail so I could have my bag hanging for my drip. I just started crying. I told her that I was just about to give up....my doctors don't care, insurance switches my chemo to a stupid incompetent company, and I have been in straight pain for TWO WEEKS!
I'm not going to give up, but its just sometimes you wonder when a break will come. There was much more in all this junk but I'm trying to make this blog post not too long.
So treatment ended at like 7 last night. Didn't get hardly any sleep last night which is normal after a treatment...it just stoves up your body and you feel real restless, weak, and blah. So today will be my rest day!
On another note...I don't want for my blog to be depressing...I started this blog to help people see inside the world of Crohn's Disease. To promote it's awareness. As I have said before Cancer is the spotlight drug and until we start speaking out...no one will know. It is my job for God to allow me to tell my testimony of how He saved my life and continues to and also tell of the disease that is allowing me to grow deeper in my relationship with Him. I tell everything as it is. I'm an honest person...always have been so I don't feel the need to back down or elaborate...I believe in the truth. So thank you to my sweet readers who truly see the pain and suffering this disease brings. I will fight it and continue to....just sometimes the fight gets tiring...love you all!!!!