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!!!!
Now rest
Friday, July 9, 2010
Sunday, June 20, 2010
A Week and a Half of Crohn's Gone Wild
ok so I was supposed to do a post about my Crohn's going into a complete whirlwind, but guess what...I didn't. Why you ask? Well Miss Allison Kelly yet again ended up in the hospital with her lovely disease. So there will be a lot of catching up.
It all had started June 9. Mrs. Becky asked me to ride with her to Mobile to pick up some pictures so I rode. For some reason that day I was so nauseous...my appetite was gone...and as the day progressed everything got worse. I took Phenergan routine and it seemed to help.
June 10 - Thursday - Same thing...nauseous all day...stomach blew up...thought to myself ok...I can handle this...my Crohn's is just irritated. Well that day Mrs. Rene came over and flushed my port. I had told her that my Crohn's wasn't acting right. Still loaded up on Phenergan and it seemed to be doing ok. Started using the bathroom more. There was not much consistency and the smell was bad again so I knew the small intestines wasn't absorbing again.
June 11 - Friday - Same again. I didn't think things would get worse though, because I'm used to having bad days. Well I had to start taking Zofran because the Phenergan wasn't cutting it. That night Andrew and I loaded up with Allie and we went to Vineland to visit Martha, Ryan, their family, and Michael came to meet us. I just took the Zofran routine that night and just tried to tough it out. My appetite was gone and I didn't eat hardly at all. We had a fun time together.
June 12 - Saturday - This is when everything go BAD! I woke up that morning and told Andrew something was bad wrong. Well I woke up...appetite gone and I was nauseous on a scale of 0 - 10 about a 20. Ran to the bathroom threw up 3 times. Ended up on the bathroom 3 times. I was like ok...I'm dehydrated for sure...tried to get some fluids. Didn't feel like that. We were at Martha and Ryan's again. Well we were all going to get lunch. I was scared to eat. Couldn't eat...finally made myself nibble on a few cheese sticks (since cheese binds and bread is good on tummy). Well I managed to keep that down. We left their house about 3 pm and headed to Andrews.
When we got to his house I thought I was ok. Then started feeling bad again. I took a pain pill because my stomach started killing me...and then I took my Zofran routine because the nausea hit. I made myself eat a little supper and ended up on the toilet. Andrew came to check on me. Well he helped me back to his room. He carried me and put me in the bed and layed with me trying to rub my back to put me to sleep. He gave me my pills and a sleeping pill. I bawled for about 2 hours straight. I knew I needed to go to the hospital, but to be honest...I just feel like a burden in so many ways that I wanted to try to tough it out. Well that was wrong on my part. I called mom and told her what was going on. She talked to Andrew and she agreed telling him to just try to get me to sleep and let me know when I had gone to bed and check in with her. Well I did fall asleep and her and Andrew stayed in contact.
June 13 - Sunday - Woke up...stomach felt like I had been punched with brass knuckles from the top of stomach all the way down to pelvis. I took some pain pills and took the Zofran. We went to my house that day. Things still were bad. Andrew tucked me in bed that night...mom was asleep since she had work and I didn't want to wake her. I cried in the bed and told Andrew I couldn't do it anymore.
June 14 - Monday - Same thing happened again ALL DAY! I told Andrew I was calling Dr. Rodriguez. I called him. He didn't seem like himself. He sounded busy and like things weren't going right. I told him about the throwing up, lots of using bathroom, joints feeling like they were falling apart, the pain. He was worried that I had gotten severely dehydrated. His nurse told me to come immediately to Mobile ER. Well then he calls back and says no to. We were almost out the door at that time. He told me he was worried I was too dehydrated and didn't want us chancing it an hour and half to mobile. I called mom and told her he canceled. So he put me on a strict fluid and bland diet. He told me to drink Gatorade constantly and told me to tell Andrew to push fluids down me and to constantly make sure I was eating something (he calls it grazing lol). Well I did that all day but it was so hard. My appetite was GONE! Well that night things weren't better. I was taking my Levbid (hyomax) for my stomach locking and it wasn't working. I went to bed that night telling Andrew I was afraid I was going to die. My body felt like I had been run into a brick wall. We agreed that in the morning we were going somewhere because it had been going on for almost a week.
June 15 - Tuesday - Wake up. Call Dr. Rod again. He still doesn't tell me to come and I got really upset. He told me that if I was worried go to my primary care. Well that upset me because these local doctors don't know how to deal with Crohn's...especially a chronic/sever case like mine. Well I was in so much pain and crying that I didn't care. Andrew loaded me up and we went to Jackson ER. I didn't want to go to Grove Hill because of the last experience and I really didn't want to go to Jackson. So I wait in the ER for an hour and half in excruciating pain. They finally get me back. They access my port...still don't get me pain medicine...do a CT...take me to a room...still no pain med...by that time my pain threshold is untouchable...which they wouldn't know that because they don't know a STUPID THIN ABOUT CROHN'S. So finally I get mad and they give me FREAKING 25 DEMEROL THROUGH A DANG DRIP! How idiotic is this. The drip ran in 15 minutes...nothing...I started bawling...I told the nurse 25 was like giving me a Tylenol...so she gave me 50 more...well like I said my threshold was out of control so it did no good.
I stayed in pain the entire time. They treated me like I was a druggie. Even make little remarks...doctor did as well. I was thinking...why in the heck would I have waited a week to come to the hospital if I wanted drugs. People have no heart. People do not have a clue the pain that comes with this disease. I finally argued with the doctors and nurses telling them I was not doing the drip anymore. It wasn't working and it was not as effective. They argued that it was...which later when Dr. Rodriguez and I talked he had steam blowing off of him. So anyways...finally they talked to the DON and she agreed to push the 75 of Demerol and give the Phenergan drip. They even made the remark that I just wanted the "rush" or the "high"...do you know how bad that hurt my heart. Yet again....WHY WOULD I HAVE WAITED A WEEK IN PAIN IF I WANTED A HIGH! I have oxycodone in my purse that I don't even touch unless I can't move...who are these people to tell me and judge me. (all that did was add stress which made my condition worse) ALSO...MY BLOOD PRESSURE NORMAL FOR IS 80/60...MY BLOOD PRESSURE GOT UP TO 150/97....THAT MEANS PAIN...THAT IS A STUPID SIGN!!!!
Ok...moving along...
June 16 - Wednesday - Another day in the hospital. They couldn't figure out what was wrong...the CT wasn't showing anything. Then he came in and told me my C-Reactive wasn't elevated...well duh it wasn't. See with most Crohn's patients their C-Reactive Protein is elevated with a flare...when I say I HAVE A BAD AND RARE CASE...I'M NOT LYING...when I got diagnosed with chronic Crohn's (actually looking at the damage in my intestines) my C level was not high...so to tell me it isn't elevated doesn't mean much. I'm different. Well you can't tell a small town doctor who doesn't know my case that because he isn't going to listen. I stayed on pain medicine all day. I was out of it...but I wasn't knocked out...if 75 Demerol doesn't knock out a 119 pound little girl...she must be in serious pain. Yes I talked out of my head...yes I was emotional, but what would you do if your pain was not being managed and people were speaking rude to you.
I'm not even going to write anymore because its going to make me cry if I keep elaborating on my stay there.
June 17 - Thursday - I talked to Dr. Rodriguez on the phone. I was upset with him. I told him I was disappointed in him. He got upset at that. I told him I wasn't being managed that I didn't want to be there...all of that. Well Dr. Hussein...whatever...told me they couldn't keep me in because they couldn't find anything. So he set me up an appointment with Dr. Rodriguez for the next day. Now while I was in the hospital I was taking Steroids (solu-medrol) Prtonix, Phenergan, Demerol...blah. They do another x-ray Thursday nothing...I'm still in dying pain but I'm so ready to get out of their I could care less. They let me go home...Dr. Hussein was going to give me Lortab. I laughed...I told him it wouldn't do a thing. He asked what I took...I said well I take Darvocet but that is for the rectal pain only that it will touch. I told him I had oxycodone but I saved that for the bad days...well the jerk didn't write me a prescription because he said that he didn't want me to have a lot of different things from different doctors (Dr. Rodriguez was later steaming with this as well). So that day I had to break into my stash that I don't touch. I will not write anymore about this day because I will cry. Let's just say yet again I thought I was going to die.
June 18 - Friday - I wake up. I feel like death. Andrew, Mom, Dad, and I go to Mobile. My appointment is at 3. I'm running a temp...my weight is 123 from all the steroids and fluids and I'm in terrible pain. When Dr. Rodriguez walked through the door he could tell it was bad. He shook everybodys hand then looked at me like he didn't have enough apologies. I'm going to cut the story short...He apologized...he hugged me...he got mad at the treatment they used for me...he got mad at the doctors remarks...the pain not being managed...the not prescribing pills...he told me in simple terms that small town doctors can't conceive what a Crohn's patient is going through. He then said that WOULD NEVER HAPPEN AGAIN. Next time I WOULD BE IN MOBILE...and HE WOULD SEE ME OR HIS ON CALL DOCTOR. He said he had indeed had a bad week, but it was no excuse. He didn't think that it was all an attack. He was thinking that with the treatments lowering my immune system, my body picked up something that ignited and threw the Crohn's for a craze. It made sense with the body aching and all. Well he put me on a strict steroid schedule, levbid, and acid reducer, and more stuff. He then told me that if I start getting bad I can't wait...he said feeling like a burden is going to get me nowhere except worse. He said the minute I feel pain to take a pill. He told me that with Crohn's you have to manage the pain the second it starts...the pain with Crohn's advances so fast and harsh that it reaches a point of where nothing can touch or manage it. He told me to quit being a martyr. It felt so nice to know that he understood. I cried and told him that I was just hurt by him. He told me that it had broke his heart to know that I was disappointed in him and he felt he had let me down. I told him...I was like I just wanted you to fix it because I knew they couldn't. Well that all got settled. He told me that it was going to be a while before I was going to be ok...it's just my case...and I'm going to have to deal with it. We left out of there and felt so much better.
Well we got back home that night. Guess what...I am pretty sure I DID INDEED HAVE A BLOCKAGE. Ok...so I didn't have a bowel movement for like 4 days...yes I didn't eat and lots of pain meds, but still I should have. Well that night I went to the bathroom...beware I'm going to get graphic so stop reading if you don't want to know...well I used the bathroom and it felt like I ripped open. It was so large...it looked infected and the smell was terrible. When I wiped I was just oozing green out. I had definitely had a blockage...that is one of the worst things for Crohn's. I came out of the bathroom and for sure took some pain medicine lol. I told them family and they were like well at least we know. I told them I would tell Dr. Rodriguez Monday (which is tomorrow).
That night was rough but I took my medicine like I should and my love tucked me in.
June 19 - Saturday - Rough Day. Lots of pain...out of it...body weak...just bad all together, but happy to be home. Andrew wasn't with me which made it hard...he was at his family's house because his brother and his wife were down. His brother and I get along fine, but Hope and I haven't talked in a while...that's a long story. So I didn't need to be there because stress is bad on Crohn's and I didn't want to mess up the family time...stress can cause a flare for me in .2 seconds. Well I felt bad as I said...but I rested...my sweet friends came and visited me and kept me company...that lifted my spirits. Went to bed.....
June 20 - Sunday - Brings me to today....it was a hard week and a half. I thought I was going to die a couple of times, but Jesus saved me. Thank you all for your love and prayers. Today I had a positive spirit and I know it came from nowhere else but Jesus. It hasn't been a wonderful day, but just the Spirit was wonderful. We had a great Fathers Day with my daddy and it was a lot of family time. I took my pills like a good girl...and only managed to take a pain pill 1 time :)!
Thank you to my friends who called, texted, came by, checked on me...everything you did...thank you! I have been blessed :)
I wrote this so fast so it might not make a bit of sense, but I needed to do a catch up. Crohn's is a never ending roller coaster battle...you never know what the next day will be or what it will bring... but oh is my testimony growing stronger with each day! My God is good! :)
This was Friday Night the 11th
This is what Saturday Night June 12 Consisted Of
Just a picture of Andrew and I in our Take Steps for Crohn's Shirts :)
It all had started June 9. Mrs. Becky asked me to ride with her to Mobile to pick up some pictures so I rode. For some reason that day I was so nauseous...my appetite was gone...and as the day progressed everything got worse. I took Phenergan routine and it seemed to help.
June 10 - Thursday - Same thing...nauseous all day...stomach blew up...thought to myself ok...I can handle this...my Crohn's is just irritated. Well that day Mrs. Rene came over and flushed my port. I had told her that my Crohn's wasn't acting right. Still loaded up on Phenergan and it seemed to be doing ok. Started using the bathroom more. There was not much consistency and the smell was bad again so I knew the small intestines wasn't absorbing again.
June 11 - Friday - Same again. I didn't think things would get worse though, because I'm used to having bad days. Well I had to start taking Zofran because the Phenergan wasn't cutting it. That night Andrew and I loaded up with Allie and we went to Vineland to visit Martha, Ryan, their family, and Michael came to meet us. I just took the Zofran routine that night and just tried to tough it out. My appetite was gone and I didn't eat hardly at all. We had a fun time together.
June 12 - Saturday - This is when everything go BAD! I woke up that morning and told Andrew something was bad wrong. Well I woke up...appetite gone and I was nauseous on a scale of 0 - 10 about a 20. Ran to the bathroom threw up 3 times. Ended up on the bathroom 3 times. I was like ok...I'm dehydrated for sure...tried to get some fluids. Didn't feel like that. We were at Martha and Ryan's again. Well we were all going to get lunch. I was scared to eat. Couldn't eat...finally made myself nibble on a few cheese sticks (since cheese binds and bread is good on tummy). Well I managed to keep that down. We left their house about 3 pm and headed to Andrews.
When we got to his house I thought I was ok. Then started feeling bad again. I took a pain pill because my stomach started killing me...and then I took my Zofran routine because the nausea hit. I made myself eat a little supper and ended up on the toilet. Andrew came to check on me. Well he helped me back to his room. He carried me and put me in the bed and layed with me trying to rub my back to put me to sleep. He gave me my pills and a sleeping pill. I bawled for about 2 hours straight. I knew I needed to go to the hospital, but to be honest...I just feel like a burden in so many ways that I wanted to try to tough it out. Well that was wrong on my part. I called mom and told her what was going on. She talked to Andrew and she agreed telling him to just try to get me to sleep and let me know when I had gone to bed and check in with her. Well I did fall asleep and her and Andrew stayed in contact.
June 13 - Sunday - Woke up...stomach felt like I had been punched with brass knuckles from the top of stomach all the way down to pelvis. I took some pain pills and took the Zofran. We went to my house that day. Things still were bad. Andrew tucked me in bed that night...mom was asleep since she had work and I didn't want to wake her. I cried in the bed and told Andrew I couldn't do it anymore.
June 14 - Monday - Same thing happened again ALL DAY! I told Andrew I was calling Dr. Rodriguez. I called him. He didn't seem like himself. He sounded busy and like things weren't going right. I told him about the throwing up, lots of using bathroom, joints feeling like they were falling apart, the pain. He was worried that I had gotten severely dehydrated. His nurse told me to come immediately to Mobile ER. Well then he calls back and says no to. We were almost out the door at that time. He told me he was worried I was too dehydrated and didn't want us chancing it an hour and half to mobile. I called mom and told her he canceled. So he put me on a strict fluid and bland diet. He told me to drink Gatorade constantly and told me to tell Andrew to push fluids down me and to constantly make sure I was eating something (he calls it grazing lol). Well I did that all day but it was so hard. My appetite was GONE! Well that night things weren't better. I was taking my Levbid (hyomax) for my stomach locking and it wasn't working. I went to bed that night telling Andrew I was afraid I was going to die. My body felt like I had been run into a brick wall. We agreed that in the morning we were going somewhere because it had been going on for almost a week.
June 15 - Tuesday - Wake up. Call Dr. Rod again. He still doesn't tell me to come and I got really upset. He told me that if I was worried go to my primary care. Well that upset me because these local doctors don't know how to deal with Crohn's...especially a chronic/sever case like mine. Well I was in so much pain and crying that I didn't care. Andrew loaded me up and we went to Jackson ER. I didn't want to go to Grove Hill because of the last experience and I really didn't want to go to Jackson. So I wait in the ER for an hour and half in excruciating pain. They finally get me back. They access my port...still don't get me pain medicine...do a CT...take me to a room...still no pain med...by that time my pain threshold is untouchable...which they wouldn't know that because they don't know a STUPID THIN ABOUT CROHN'S. So finally I get mad and they give me FREAKING 25 DEMEROL THROUGH A DANG DRIP! How idiotic is this. The drip ran in 15 minutes...nothing...I started bawling...I told the nurse 25 was like giving me a Tylenol...so she gave me 50 more...well like I said my threshold was out of control so it did no good.
I stayed in pain the entire time. They treated me like I was a druggie. Even make little remarks...doctor did as well. I was thinking...why in the heck would I have waited a week to come to the hospital if I wanted drugs. People have no heart. People do not have a clue the pain that comes with this disease. I finally argued with the doctors and nurses telling them I was not doing the drip anymore. It wasn't working and it was not as effective. They argued that it was...which later when Dr. Rodriguez and I talked he had steam blowing off of him. So anyways...finally they talked to the DON and she agreed to push the 75 of Demerol and give the Phenergan drip. They even made the remark that I just wanted the "rush" or the "high"...do you know how bad that hurt my heart. Yet again....WHY WOULD I HAVE WAITED A WEEK IN PAIN IF I WANTED A HIGH! I have oxycodone in my purse that I don't even touch unless I can't move...who are these people to tell me and judge me. (all that did was add stress which made my condition worse) ALSO...MY BLOOD PRESSURE NORMAL FOR IS 80/60...MY BLOOD PRESSURE GOT UP TO 150/97....THAT MEANS PAIN...THAT IS A STUPID SIGN!!!!
Ok...moving along...
June 16 - Wednesday - Another day in the hospital. They couldn't figure out what was wrong...the CT wasn't showing anything. Then he came in and told me my C-Reactive wasn't elevated...well duh it wasn't. See with most Crohn's patients their C-Reactive Protein is elevated with a flare...when I say I HAVE A BAD AND RARE CASE...I'M NOT LYING...when I got diagnosed with chronic Crohn's (actually looking at the damage in my intestines) my C level was not high...so to tell me it isn't elevated doesn't mean much. I'm different. Well you can't tell a small town doctor who doesn't know my case that because he isn't going to listen. I stayed on pain medicine all day. I was out of it...but I wasn't knocked out...if 75 Demerol doesn't knock out a 119 pound little girl...she must be in serious pain. Yes I talked out of my head...yes I was emotional, but what would you do if your pain was not being managed and people were speaking rude to you.
I'm not even going to write anymore because its going to make me cry if I keep elaborating on my stay there.
June 17 - Thursday - I talked to Dr. Rodriguez on the phone. I was upset with him. I told him I was disappointed in him. He got upset at that. I told him I wasn't being managed that I didn't want to be there...all of that. Well Dr. Hussein...whatever...told me they couldn't keep me in because they couldn't find anything. So he set me up an appointment with Dr. Rodriguez for the next day. Now while I was in the hospital I was taking Steroids (solu-medrol) Prtonix, Phenergan, Demerol...blah. They do another x-ray Thursday nothing...I'm still in dying pain but I'm so ready to get out of their I could care less. They let me go home...Dr. Hussein was going to give me Lortab. I laughed...I told him it wouldn't do a thing. He asked what I took...I said well I take Darvocet but that is for the rectal pain only that it will touch. I told him I had oxycodone but I saved that for the bad days...well the jerk didn't write me a prescription because he said that he didn't want me to have a lot of different things from different doctors (Dr. Rodriguez was later steaming with this as well). So that day I had to break into my stash that I don't touch. I will not write anymore about this day because I will cry. Let's just say yet again I thought I was going to die.
June 18 - Friday - I wake up. I feel like death. Andrew, Mom, Dad, and I go to Mobile. My appointment is at 3. I'm running a temp...my weight is 123 from all the steroids and fluids and I'm in terrible pain. When Dr. Rodriguez walked through the door he could tell it was bad. He shook everybodys hand then looked at me like he didn't have enough apologies. I'm going to cut the story short...He apologized...he hugged me...he got mad at the treatment they used for me...he got mad at the doctors remarks...the pain not being managed...the not prescribing pills...he told me in simple terms that small town doctors can't conceive what a Crohn's patient is going through. He then said that WOULD NEVER HAPPEN AGAIN. Next time I WOULD BE IN MOBILE...and HE WOULD SEE ME OR HIS ON CALL DOCTOR. He said he had indeed had a bad week, but it was no excuse. He didn't think that it was all an attack. He was thinking that with the treatments lowering my immune system, my body picked up something that ignited and threw the Crohn's for a craze. It made sense with the body aching and all. Well he put me on a strict steroid schedule, levbid, and acid reducer, and more stuff. He then told me that if I start getting bad I can't wait...he said feeling like a burden is going to get me nowhere except worse. He said the minute I feel pain to take a pill. He told me that with Crohn's you have to manage the pain the second it starts...the pain with Crohn's advances so fast and harsh that it reaches a point of where nothing can touch or manage it. He told me to quit being a martyr. It felt so nice to know that he understood. I cried and told him that I was just hurt by him. He told me that it had broke his heart to know that I was disappointed in him and he felt he had let me down. I told him...I was like I just wanted you to fix it because I knew they couldn't. Well that all got settled. He told me that it was going to be a while before I was going to be ok...it's just my case...and I'm going to have to deal with it. We left out of there and felt so much better.
Well we got back home that night. Guess what...I am pretty sure I DID INDEED HAVE A BLOCKAGE. Ok...so I didn't have a bowel movement for like 4 days...yes I didn't eat and lots of pain meds, but still I should have. Well that night I went to the bathroom...beware I'm going to get graphic so stop reading if you don't want to know...well I used the bathroom and it felt like I ripped open. It was so large...it looked infected and the smell was terrible. When I wiped I was just oozing green out. I had definitely had a blockage...that is one of the worst things for Crohn's. I came out of the bathroom and for sure took some pain medicine lol. I told them family and they were like well at least we know. I told them I would tell Dr. Rodriguez Monday (which is tomorrow).
That night was rough but I took my medicine like I should and my love tucked me in.
June 19 - Saturday - Rough Day. Lots of pain...out of it...body weak...just bad all together, but happy to be home. Andrew wasn't with me which made it hard...he was at his family's house because his brother and his wife were down. His brother and I get along fine, but Hope and I haven't talked in a while...that's a long story. So I didn't need to be there because stress is bad on Crohn's and I didn't want to mess up the family time...stress can cause a flare for me in .2 seconds. Well I felt bad as I said...but I rested...my sweet friends came and visited me and kept me company...that lifted my spirits. Went to bed.....
June 20 - Sunday - Brings me to today....it was a hard week and a half. I thought I was going to die a couple of times, but Jesus saved me. Thank you all for your love and prayers. Today I had a positive spirit and I know it came from nowhere else but Jesus. It hasn't been a wonderful day, but just the Spirit was wonderful. We had a great Fathers Day with my daddy and it was a lot of family time. I took my pills like a good girl...and only managed to take a pain pill 1 time :)!
Thank you to my friends who called, texted, came by, checked on me...everything you did...thank you! I have been blessed :)
I wrote this so fast so it might not make a bit of sense, but I needed to do a catch up. Crohn's is a never ending roller coaster battle...you never know what the next day will be or what it will bring... but oh is my testimony growing stronger with each day! My God is good! :)
This was Friday Night the 11th
This is what Saturday Night June 12 Consisted Of
Just a picture of Andrew and I in our Take Steps for Crohn's Shirts :)
Monday, June 14, 2010
My Dream Come True
Right after I complete this post I will be posting was has been going on the last 5 days. My Crohn's has been flared full force. I probably should be in the hospital, but I'm trying to tough out I guess you can say. Anyways...Dr. Rodriguez should be calling shortly and we will decide and I will do the post on what we are to do. Now for one of the BEST days of my life!
June 5, 2010 - Take Steps, Be Heard for Crohn's and Colitis 2010 As you all know I captained the team Purple Hearts. Also, most of you know that our team was named VIP 2010 and was also named the GRAND MARSHALLS! This means that the Purple Hearts raised the MOST money! Just how much you ask? Well we can still turn in some right now, but the total as of now is like $8,600. That is amazing for a time span of only what...8 weeks? God is so good! Ok...so my family and I leave Jackson around 11 am...we head towards Birmingham and pit stop at Fulton which is 30 minutes from our house. We pick up Andrew and his mommy, Mrs. Judy. We load the ice cooler with the drinks that were donated from The Coca Cola Company in Leroy...and head on. Well that morning I think I was so excited and emotional...my Crohn's was all for a loop. I had spent that morning on the toilet. Well I was hurting pretty bad on the way up so I was like *you know what...this is my day...my teams day...I'm not going to hurt...so for once I took my Darvocet without question!* Ok...so well the ENTIRE way to Birmingham...I talked everyone's ear OFF LOL! My mom, dad, andrew, mrs. judy, and even myself...haha! So we arrive at our hotel about 3 and we were all hungry. (By the way...the hotel was absolutely beauitful...always wanted to stay at a Hilton...well I gad this bad boy at a whopping cheap deal offline since it was a canceled room...THANK YOU JESUS :)...because it topped everything off).
So we unload and then we go eat at a restaurant down the road. It was called Billy's Bar and Grill...so my tummy was being stubborn, but I knew I was going to have to put something in it. So we are looking at the menu trying to order...well we order and I felt so bad because I kept changing my mind because I was scared to eat, and the waitress was really nice about it. Well after this one of them asks what our shirts are for. We tell them about my case with Crohn's and about the walk. Our food gets there...we start eating...my appetite stinks...go to the bathroom...upchuck some...come back and Jesus was already working. While we are sitting there a girl that works there comes to the table and says...we all took up some money for your walk in the back...I started crying and gave her a hug...then mom got tears, mrs judy got tears, dad got tears, and all the waiters and waitresses got tears...it was a tear fest! I thanked them all and we got their address and left for our way to the walk!
We follow Jordan and her mommy to the park and I see the park! I cannot tell you what my heart was doing...this was going to be an amazing day! Well we get out and immediately head to our VIP TENT! It had fruit, cookies, cookies with little sayins on them about our team, drinks, juice, leis, everything :)! Well all of us start chipping in and putting up decorations...Jordan surprises me with the sweetest gift! A art work of Purple Hearts! It made me excited! Then we got more surprised because my sweet dear old friend Jamie showed up! We had a splendid hug! :) Her and Jordan hit it right off! Right after Jamie...Aunt Dana, Uncle Bucky, Kayla and Daniel showed up! They of course went right to work. Then Mrs. Becky, Genna, and Zeb! Mrs. Becky and Zeb went on the mission of pictures...they did so a good job capturing everything! They even convinced Butts and Guts to give me a shirt! YAY! Well we all chipped in again and finished decorating...the tent was precious! Went to the car to help dad get some yummies and I got attacked by my best friend since 9! Candace Barnes...we walked hand in hand back to the tent and I lost it...just started crying. Paul was there of course, but her MOM AND KENDAL CAME! I hadn't seen them in so long and Mrs. Krista half raised me and Kendal was my baby sister. My heart was warm!
We then went to the sign up tents...everybody got their tickets for their shirts and all the good stuff. We all gathered back at the tent! :) Well then we had the ceremony...they called out the top three team's captains. I was the last to go up since we were the top...and I got to give my testimony. I didn't write anything because I wanted it from the heart...I also didn't speak long, because the event didn't take long and Pat was being kind enough to let me give my testimony...(looking back I smile because I messed up and said cancer is the spotlight drug instead of disease) I dont' care though...it shows my testimony was not rehearsed and it came from the heart...that's all I wanted! I asked God to give me the words so yay! So after all the talking it was GRAND MARSHALL TIME! My sweet team-mates and I led the walk! I got tears in my eyes at first...you should have seen the line of people behind us and WE WERE LEADING IT! Such emotions...for one day of my life people were STANDING UP TO CROHNS AND COLITIS! For one day we were fighting it together...for one day I was gathered around 500 people who knew what truly was going on in my body...that knew what my pain was...that knew the emotional battle! All of my family friends....just an indescribable feeling! Well then I got pumped up...so umm most of us lovely girls led the walk by silly dancing to the music they were playing! Amazing feeling again! Can't describe!
Well we walked for a good while (Pat said that was the most people had ever walked)...then mom and dad flagged me to come to the tent stage thingy. We sang "The Storm Before the Calm" the song my dad wrote that received its Gospel Songwriter Award and then I sang "Temporary Home". I sang Temporary Home because even if I'm not healed while I'm on earth...I will be one day. Although things may be bad right now, they won't be one day. I have a home in the future where I will receive a glorified body and will live with my BESTEST FRIEND, Jesus! So even though I am on earth...and my mission is to tell others about Him...it is still only my temporary home! After I finished I had so many people come up wanting to know about my severity of my case and what all they had done and were going to do. It was so nice...these people suffered with what I have and that were intrigued to find out how crazy it could get! I made so many special friends! I even had a doctor that works at UAB peds for gastroenterology come up to me asking about my case. He told me that if I needed anymore help that they would love to work on my case...kept talking told me to call Pat and she would get up with him for me. I was like WOW...is a doctor really interested in me for one :)! It made me feel good, but on a side note I would never leave Dr. Rodriguez. To be honest it was scary listening to some of the new friends...some of their doctors had put them on Remicade and just stopped them. I have told you all before how serious that is! For me my treamtments are my LAST option...I have no options left after them so I have to stick. If you stop Remicade you will immediately build antibodies and you won't be able to get back on. They had just gotten on Remicade for a flare. I was thinking Dear Jesus, thank you for blessing me with Dr. Rodriguez and for giving him the knowledge and the past as pharmacist to know what to do for me! I was so proud of my doctor when I heard all the people that had been yanked off. Also...Remicade shouldn't be put on Remicade just for a flare...it is supposed to be used as a continous treatment/shot. So lots of talking, everyone ate except me, everyone talked, we laughed, we just spent time together!
Well everything started coming to an end and I began being sad because I didn't want it to end! Well a fuy named Eric Watters had performed that night...as we are loading Dad said allison you should really go talk to him...his story is amazing! So andrew, aunt dana, uncle bucky, kaykay, daniel, and I went to talk to him. I learned of his story, met his wife, and all I can say is wow! He had ulcerative colitis...he almost died from it...well they did surgery to remove his colon which is the cure for UC. He had to wear a colostomy for a long time, and then they were able to connect the intestines left back so that he wouldn't have to have the colostomy anymore. He said it was like being a baby again having to relearn. His wife also said that he had lost so much weight to the point she could pick him up...that would be like me being able to pick up andrew...that wouldn't happen unless he was a stick! For ONCE! I met someone who had IBD (inflammatory bowel disease -crohn's or uc) as bad as I. Yes he is now cured, but still...what he went through will ever haunt his memory and we were able to connect in a way that no one else can! His wife was absolutely beautiful and precious! I keep in touch with them now and it was/is truly a gift from God!
The day after was emotional...Jamie described it better than anyone else when she said "It feels like the day after Christmas, all the presents are gone!" We all had worked so hard and had such a blessing and it was over. We know there will be another one next year, but the feelings felt that day were so amazing that you don't want to wait...it was a sweet fellowship! I met so many Christians brothers and sisters and there was more Jesus talk there than probably in most churches!
Take Steps was indescribable! My team-mates were amazing! and God worked in such a beautiful way! Thank you to everyone for their support, donations, but most of all prayers! Cannot thank everyone enough! I told someone I felt like a princess that day and that hasn't happened ever since Oct. 2009 when everything started happening!
June 5, 2010 - Take Steps, Be Heard for Crohn's and Colitis 2010 As you all know I captained the team Purple Hearts. Also, most of you know that our team was named VIP 2010 and was also named the GRAND MARSHALLS! This means that the Purple Hearts raised the MOST money! Just how much you ask? Well we can still turn in some right now, but the total as of now is like $8,600. That is amazing for a time span of only what...8 weeks? God is so good! Ok...so my family and I leave Jackson around 11 am...we head towards Birmingham and pit stop at Fulton which is 30 minutes from our house. We pick up Andrew and his mommy, Mrs. Judy. We load the ice cooler with the drinks that were donated from The Coca Cola Company in Leroy...and head on. Well that morning I think I was so excited and emotional...my Crohn's was all for a loop. I had spent that morning on the toilet. Well I was hurting pretty bad on the way up so I was like *you know what...this is my day...my teams day...I'm not going to hurt...so for once I took my Darvocet without question!* Ok...so well the ENTIRE way to Birmingham...I talked everyone's ear OFF LOL! My mom, dad, andrew, mrs. judy, and even myself...haha! So we arrive at our hotel about 3 and we were all hungry. (By the way...the hotel was absolutely beauitful...always wanted to stay at a Hilton...well I gad this bad boy at a whopping cheap deal offline since it was a canceled room...THANK YOU JESUS :)...because it topped everything off).
So we unload and then we go eat at a restaurant down the road. It was called Billy's Bar and Grill...so my tummy was being stubborn, but I knew I was going to have to put something in it. So we are looking at the menu trying to order...well we order and I felt so bad because I kept changing my mind because I was scared to eat, and the waitress was really nice about it. Well after this one of them asks what our shirts are for. We tell them about my case with Crohn's and about the walk. Our food gets there...we start eating...my appetite stinks...go to the bathroom...upchuck some...come back and Jesus was already working. While we are sitting there a girl that works there comes to the table and says...we all took up some money for your walk in the back...I started crying and gave her a hug...then mom got tears, mrs judy got tears, dad got tears, and all the waiters and waitresses got tears...it was a tear fest! I thanked them all and we got their address and left for our way to the walk!
We follow Jordan and her mommy to the park and I see the park! I cannot tell you what my heart was doing...this was going to be an amazing day! Well we get out and immediately head to our VIP TENT! It had fruit, cookies, cookies with little sayins on them about our team, drinks, juice, leis, everything :)! Well all of us start chipping in and putting up decorations...Jordan surprises me with the sweetest gift! A art work of Purple Hearts! It made me excited! Then we got more surprised because my sweet dear old friend Jamie showed up! We had a splendid hug! :) Her and Jordan hit it right off! Right after Jamie...Aunt Dana, Uncle Bucky, Kayla and Daniel showed up! They of course went right to work. Then Mrs. Becky, Genna, and Zeb! Mrs. Becky and Zeb went on the mission of pictures...they did so a good job capturing everything! They even convinced Butts and Guts to give me a shirt! YAY! Well we all chipped in again and finished decorating...the tent was precious! Went to the car to help dad get some yummies and I got attacked by my best friend since 9! Candace Barnes...we walked hand in hand back to the tent and I lost it...just started crying. Paul was there of course, but her MOM AND KENDAL CAME! I hadn't seen them in so long and Mrs. Krista half raised me and Kendal was my baby sister. My heart was warm!
We then went to the sign up tents...everybody got their tickets for their shirts and all the good stuff. We all gathered back at the tent! :) Well then we had the ceremony...they called out the top three team's captains. I was the last to go up since we were the top...and I got to give my testimony. I didn't write anything because I wanted it from the heart...I also didn't speak long, because the event didn't take long and Pat was being kind enough to let me give my testimony...(looking back I smile because I messed up and said cancer is the spotlight drug instead of disease) I dont' care though...it shows my testimony was not rehearsed and it came from the heart...that's all I wanted! I asked God to give me the words so yay! So after all the talking it was GRAND MARSHALL TIME! My sweet team-mates and I led the walk! I got tears in my eyes at first...you should have seen the line of people behind us and WE WERE LEADING IT! Such emotions...for one day of my life people were STANDING UP TO CROHNS AND COLITIS! For one day we were fighting it together...for one day I was gathered around 500 people who knew what truly was going on in my body...that knew what my pain was...that knew the emotional battle! All of my family friends....just an indescribable feeling! Well then I got pumped up...so umm most of us lovely girls led the walk by silly dancing to the music they were playing! Amazing feeling again! Can't describe!
Well we walked for a good while (Pat said that was the most people had ever walked)...then mom and dad flagged me to come to the tent stage thingy. We sang "The Storm Before the Calm" the song my dad wrote that received its Gospel Songwriter Award and then I sang "Temporary Home". I sang Temporary Home because even if I'm not healed while I'm on earth...I will be one day. Although things may be bad right now, they won't be one day. I have a home in the future where I will receive a glorified body and will live with my BESTEST FRIEND, Jesus! So even though I am on earth...and my mission is to tell others about Him...it is still only my temporary home! After I finished I had so many people come up wanting to know about my severity of my case and what all they had done and were going to do. It was so nice...these people suffered with what I have and that were intrigued to find out how crazy it could get! I made so many special friends! I even had a doctor that works at UAB peds for gastroenterology come up to me asking about my case. He told me that if I needed anymore help that they would love to work on my case...kept talking told me to call Pat and she would get up with him for me. I was like WOW...is a doctor really interested in me for one :)! It made me feel good, but on a side note I would never leave Dr. Rodriguez. To be honest it was scary listening to some of the new friends...some of their doctors had put them on Remicade and just stopped them. I have told you all before how serious that is! For me my treamtments are my LAST option...I have no options left after them so I have to stick. If you stop Remicade you will immediately build antibodies and you won't be able to get back on. They had just gotten on Remicade for a flare. I was thinking Dear Jesus, thank you for blessing me with Dr. Rodriguez and for giving him the knowledge and the past as pharmacist to know what to do for me! I was so proud of my doctor when I heard all the people that had been yanked off. Also...Remicade shouldn't be put on Remicade just for a flare...it is supposed to be used as a continous treatment/shot. So lots of talking, everyone ate except me, everyone talked, we laughed, we just spent time together!
Well everything started coming to an end and I began being sad because I didn't want it to end! Well a fuy named Eric Watters had performed that night...as we are loading Dad said allison you should really go talk to him...his story is amazing! So andrew, aunt dana, uncle bucky, kaykay, daniel, and I went to talk to him. I learned of his story, met his wife, and all I can say is wow! He had ulcerative colitis...he almost died from it...well they did surgery to remove his colon which is the cure for UC. He had to wear a colostomy for a long time, and then they were able to connect the intestines left back so that he wouldn't have to have the colostomy anymore. He said it was like being a baby again having to relearn. His wife also said that he had lost so much weight to the point she could pick him up...that would be like me being able to pick up andrew...that wouldn't happen unless he was a stick! For ONCE! I met someone who had IBD (inflammatory bowel disease -crohn's or uc) as bad as I. Yes he is now cured, but still...what he went through will ever haunt his memory and we were able to connect in a way that no one else can! His wife was absolutely beautiful and precious! I keep in touch with them now and it was/is truly a gift from God!
The day after was emotional...Jamie described it better than anyone else when she said "It feels like the day after Christmas, all the presents are gone!" We all had worked so hard and had such a blessing and it was over. We know there will be another one next year, but the feelings felt that day were so amazing that you don't want to wait...it was a sweet fellowship! I met so many Christians brothers and sisters and there was more Jesus talk there than probably in most churches!
Take Steps was indescribable! My team-mates were amazing! and God worked in such a beautiful way! Thank you to everyone for their support, donations, but most of all prayers! Cannot thank everyone enough! I told someone I felt like a princess that day and that hasn't happened ever since Oct. 2009 when everything started happening!
Tuesday, May 25, 2010
The Long Update
So I slacked a little, but I have reasons! I have had good days, but as always more bad days. Last week Andrew and I had the opportunity to escape the real world for just a little. My grandparents (my fathers side) live in South Carolina. Well my grandmother's sister and her husband (great aunt and uncle) always go on little vacations. They both have very extreme cases of polio so it helps them to get away as well. Well my grandparents always go with them on their trips to help them because it is so hard for them to get around. Well guess where they went? GULF SHORES! Just 2 1/2 hours away from us! So Andrew and I drove down on the 17th and came back on the 20th. We enjoyed our time. So Andrew and I got home on Thursday. Thursday felt so so....well Friday was AWFUL!
Saturday - Andrew and I were just laying around resting at his house. He got a new game so I was watching him play. Well all of a sudden Crohn's decided to make its grand appearance. I got nauseated to the point of pass out again. I can't explain...nauseous almost doesn't serve justice to what I need to describe. It is to the point I can't move or I feel like I'm going to go out...well I pretty much crawled from the couch to Andrew's bed. I was trying to tough it out because I didn't want him to have to see me so bad again. He sees it all the time and it hurts him so bad!! Well, finally I started BAWLING! It made it worse to cry also to talk....well I finally managed to mumble his name and he came over and held me and got me some phenergan. Well I took it and he rubbed my head and held me. I SLEPT ALL DAY FRIDAY AND INTO SATURDAY! It was RIDICULOUS! I woke up the next day just feeling sick but not as bad as before.
Ok...so now I have to skip a little ahead. That was Friday which was the 21st. Well Monday as you all know were two BIG appointments. I am still having issues with EVERYTHING! Bowel movements....still bleeding...not with every single one, but still am. The pain along with them...still there! So my first appointment was a check up for the fissure (internal). This appointment was going to be with Dr. Rider (my peri-rectal surgeon). The next appointment Monday would be with Dr. Rodriguez (my heart and my gastroenterologist). My appointment with him was most important. See I have finished my "induction" treatments (my first three treatments). After your first three you have to have an appointment to talk everything through figure out everything and put it all together. Get lots of blood work and just have lots of communication between the doctor and patient (myself).
Dr. Rider appointment - 11:45
Before I tell the story I will say that I am to the point of anger with him right now. I think Dr. Rodriguez was as well. (or maybe that is just me in my dream world...haha...maybe I just want him to be on my side)
Andrew and I get there and go back. Well he comes in. He tells me I look good (I get tired of people telling me that...I haven't gained much weight and appearances are NOTHING with Crohn's). Well he asked about everything. I told him a lot. Key things - bowel movements = EXCRUCIATING PAIN bleeding = still...not ALL the time, but still. That is most he needs to know. Well he took me into the exam room.
Yet again I'm going to get personal. So he had to use the pediatric anus scope again...let me just say THAT THIS TIME...IT HURT WORSE! He didn't look to much because he could tell it was hurting worse. So once he removed it I said "SO?" and he said "Well...I can't tell much. If it is better I sure can't tell. It definitely isn't worse, but it isn't better either." *Well in my head I'm thinking ok...I can handle this when is surgery lets just get it done because I don't want another FISTULA! I can handle this surgery, but not another fistula surgery* Well...he told me to get dressed and he would meet me back in room. So when we get back, he again told me no better on fissure, but I looked better. (Ok...he is a surgeon...not my doctor...grrrr) So...he told me he wanted to put surgery off and see what my NEXT TREATMENT DID! WE HAVE PUT SURGERY OFF FOR TWOOOOOOOOO MONTHS. IM HURTING, IM BLEEDING....GET IT OVER WITH BECAUSE I DONT WANT A FISTULA!!! Let me explain fissure gets infected and turns into fistula. Well if you have nasty stuff rubbing up against something every bowel movement and I'm immunosuppressed from my treatment, why the junk wouldn't you go ahead and fix it before its worse!!! Ok...I'm just being honest about my feelings...this is MY BLOG! ok....now for cool down. So I looked at him fed up and said "WELL WHAT DO YOU WANT ME TO DO WHEN I POO AND IT HURTS LIKE HECK?" He said "Well I don't like to do this and usually don't but I'm going to prescribe you this steroid/hydrocortisone cream that you insert with a tube...use the entire tube...one tube every night" I just nodded and was ready to see my Dr. Rod. So I go back to see him July 12. Let's pray my fissure doesn't turn into a fistula.
(Also...I was scared before we went...getting graphic again, but when I had my movements, they did not smell normal. They smelled like back with the fistula...very infectious smell. *its a nursing term...haha* Well I told him about it and this was NOT GOOD NEWS...he said something about my small bowel was not absorbing so it was putting off a lot of that would give it a very foul and unpleasant you know. Well umm that isn't good that I'm not absorbing...grrr)
Ok...no time to waste
Dr. Rodriguez appointment 1:00 pm
Get weighed...I had just worked up to like 122...back down to 119. Well...Andrew and I were sitting in the room waiting for my favorite doctor to come in. Now this appointment lasted FOREVER! So I might leave out a lot...I'm sorry. When I told him about the fissure being there STILL FOR TWO MONTHS...I promise to me it looked like he was really aggravated, but it might have been my imagination. I think Dr. Rider is afraid because my case is so severe and I think he is afraid to do surgery with me on these treatments...but I mean I'm going to be on them forever. Anyways...so I talked to Dr. Rodriguez about EVERYTHING! I told him about my bad days...I told him about how my body goes nuts wanting treatments...(the throwing up everything, the dry heaving, the using the bathroom more, no appetite, joints worse...bad stuff...its like my body needs them, BUT am still not showing signs of improvement...BUT STILL I think its good it wants them? right? *positive thinking*) Ok. Well we had talked on phone about increasing my Remicade treatments. He looked at me and said "Allison, I really don't want to take that step YET!" He told me how yet again that would be taking ANOTHER LIFE CHANGING STEP! I am on 5 mg/kg as of now. He said he wanted to stick to this for six months. After that we could re-evaluate and then make the HUGE step to the 10 mg/kg. Yet again the risk of cancer with these so I think he is trying to take safe way. Also...my treatments will be now every 8 weeks. We talked about every 6 weeks because my body wanting so bad. Well he told me that, that would be like changing dosage...so we will wait the six months for that as well.
He told me to let him know if my body started showing signs of needing and if it got to the point of body literally desperate we would take the 6 week step before increasing the dosage. Now for not so fun news. He told me he feared that I was going to also have to go back on pills along with the treatments. He told me that we aren't reaching our goal which is (more better days than bad days). He said we wouldn't just yet, but it would be in the future. I was disappointed and he could tell, but I know that he is trying to get me better so I told him I understood.
He is putting me already back on my Zinc pills (two a day) for my ulcers that keep coming in mouth and for the ones in my entire digestive tract (mouth to anus). Also...he is putting me back on Hycosamine (two a day) for my TERRIBLE intestine cramp ups! *the ones I told you I contract into fetal position because it clamps down and won't unlock*. I told him of the cream Dr. Rider put me on and he just nodded. He then did a physical on my tummy. Everywhere he touched and palpated hurt so bad. He also noticed my tummy swollen and real distended.
Ok...so we talked and he went to his therapist mode because he could tell I was just hurting not only physically but emotionally. He knew and told me to talk to him. Well I looked at Andrew and Andrew was telling me with his eyes to just unload, because he knew I needed it. (Dr. Rodriguez is such an amazing remarkable Christian man who loves what he does, and I thank God for him) So I started on him.
1st - I told him I was still upset because I felt like when I went out people were thinking well "nothing is wrong with her" "she looks fine" and I told him...I was like I hear people say *well you've gained weight* *eww well you've lost weight* I told him it's hard because nobody SEES WHAT I GO THROUGH! I told him "Dr Rod...Crohn's is such an undercover disease" People can't see what I feel or see what I look like in there, but you and I know. He looked at me and said "Allison, what does it matter what other people think? You are sick! I know you are, you know you are, he knows you are, so who cares what they think. You have got to quit putting pressure on yourself" *that made me feel better* then he said...what else!!! LOL ITS LIKE HE KNOWS!
2nd - I feel like a failure! *this one got to him* He said "YOU ARE 21! HOW CAN YOU BE A FAILURE?! He said I'm 50 something I'm 30 years your age...if I was sitting at home doing nothing THAT WOULD BE A FAILURE." Then he asked me why I felt this way. I told him about not working, feeling bad about not working and just feeling like people expected so much more and I felt like I was letting everyone down. Yet again he told me that I put too much pressure on myself and that it didn't matter. He said, "Sweetpea I TOLD YOU it would take TIME. When I said it I meant it. I don't know why its YOU. but it is." *he frowned* He went on to tell me that we are trying to get me better but it was going to be a long road. I was going to have to accept that I was NOT superwoman and I would NEVER BE NORMAL AGAIN! Wow...that makes me feel good typing that...ok I'm saying it again I WILL NEVER BE NORMAL AGAIN...THINGS ARE GOING TO CHANGE...I'M GOING TO HAVE TO REROUTE...AND THAT'S OKAY! *I'm shaking typing that* So I started crying and he just hugged me and you could tell it was helping Andrew as well.
Dr. Rodriguez told me that it was going to take time and he knew that. He told me I was still in denial and I frowned and said really? He nodded and said yeah but there was nothing wrong with it. That he understood why I was and it would take one day at a time. I can't remember if anything else happened...so he was like anything else...and I said YEAH! WHAT ABOUT MY DONATION! LOL. He rolled his eyes and clung to the door like a dreaded thing LOL and said "Well let me goooooo get my check book so I can write you a hundddddred dollar donation for your team!" I squealed really and he laughed and said really then closed the door. Well I had to go the lab to GET BUNCHES OF BLOOD DRAWN...EEEKY! I was mad at him when he said we weren't using port first lol...so he met Andrew and I in the hall with a brown paper bag...I thought I had a goodie...LOL UMMM A GOODIE OF ANALPRAM!!!! haha! He was like here are some free samples...this is the stuff Dr. Rider prescribed you. So I accepted nicely and then he said ok...blood time. So he followed in there and I was grr. So he was writing check and the lady was getting my blood out of the evil arm that is destroyed GOOD! :) I told him he was my good luck charm and asked him to come every time...Andrew laughed, and Dr. Rod said "umm...no I don't think so!" He gave me my check Andrew and I told him bye and I gave him his big hug that he always deserves! :) So we left! I felt so much better talking to him, because he doesn't sugar coat ANYTHING! HE IS HONEST!!!!!! Thank you Lord for blessing me with an honest doctor and for helping our relationship to where it is today!
So Andrew and I went to eat...I ate...got sick and threw up in my napkin...wont be eating at that place for probably a few years! That's the evil thing about Crohn's...when something makes you sick...you don't want to eat it for a LOOOONG time...no matter if its chocolate cake or pizza!
So we went to his apartment and finished moving his stuff then headed home! Twas a long day/kind of sad day and we were both POOPED!
I'm sorry it took so long to write, but I have been trying to just rest, been sick, and just junk! Thank you all for everything! If there are errors just overlook them because this was SO MUCH!
Here are a few pictures from us at the beach! :) :)
me with my grandparents at the pavilion
andrew with the gradparents :)
Andrew & I at the beach :) I got a purple
bathing suit because Purple = Crohn's Color
and our team is PURPLE HEARTS! :)
Andrew capturing me scariness :)
Kind of blurry but I love!
The Love of My Life!
Saturday - Andrew and I were just laying around resting at his house. He got a new game so I was watching him play. Well all of a sudden Crohn's decided to make its grand appearance. I got nauseated to the point of pass out again. I can't explain...nauseous almost doesn't serve justice to what I need to describe. It is to the point I can't move or I feel like I'm going to go out...well I pretty much crawled from the couch to Andrew's bed. I was trying to tough it out because I didn't want him to have to see me so bad again. He sees it all the time and it hurts him so bad!! Well, finally I started BAWLING! It made it worse to cry also to talk....well I finally managed to mumble his name and he came over and held me and got me some phenergan. Well I took it and he rubbed my head and held me. I SLEPT ALL DAY FRIDAY AND INTO SATURDAY! It was RIDICULOUS! I woke up the next day just feeling sick but not as bad as before.
Ok...so now I have to skip a little ahead. That was Friday which was the 21st. Well Monday as you all know were two BIG appointments. I am still having issues with EVERYTHING! Bowel movements....still bleeding...not with every single one, but still am. The pain along with them...still there! So my first appointment was a check up for the fissure (internal). This appointment was going to be with Dr. Rider (my peri-rectal surgeon). The next appointment Monday would be with Dr. Rodriguez (my heart and my gastroenterologist). My appointment with him was most important. See I have finished my "induction" treatments (my first three treatments). After your first three you have to have an appointment to talk everything through figure out everything and put it all together. Get lots of blood work and just have lots of communication between the doctor and patient (myself).
Dr. Rider appointment - 11:45
Before I tell the story I will say that I am to the point of anger with him right now. I think Dr. Rodriguez was as well. (or maybe that is just me in my dream world...haha...maybe I just want him to be on my side)
Andrew and I get there and go back. Well he comes in. He tells me I look good (I get tired of people telling me that...I haven't gained much weight and appearances are NOTHING with Crohn's). Well he asked about everything. I told him a lot. Key things - bowel movements = EXCRUCIATING PAIN bleeding = still...not ALL the time, but still. That is most he needs to know. Well he took me into the exam room.
Yet again I'm going to get personal. So he had to use the pediatric anus scope again...let me just say THAT THIS TIME...IT HURT WORSE! He didn't look to much because he could tell it was hurting worse. So once he removed it I said "SO?" and he said "Well...I can't tell much. If it is better I sure can't tell. It definitely isn't worse, but it isn't better either." *Well in my head I'm thinking ok...I can handle this when is surgery lets just get it done because I don't want another FISTULA! I can handle this surgery, but not another fistula surgery* Well...he told me to get dressed and he would meet me back in room. So when we get back, he again told me no better on fissure, but I looked better. (Ok...he is a surgeon...not my doctor...grrrr) So...he told me he wanted to put surgery off and see what my NEXT TREATMENT DID! WE HAVE PUT SURGERY OFF FOR TWOOOOOOOOO MONTHS. IM HURTING, IM BLEEDING....GET IT OVER WITH BECAUSE I DONT WANT A FISTULA!!! Let me explain fissure gets infected and turns into fistula. Well if you have nasty stuff rubbing up against something every bowel movement and I'm immunosuppressed from my treatment, why the junk wouldn't you go ahead and fix it before its worse!!! Ok...I'm just being honest about my feelings...this is MY BLOG! ok....now for cool down. So I looked at him fed up and said "WELL WHAT DO YOU WANT ME TO DO WHEN I POO AND IT HURTS LIKE HECK?" He said "Well I don't like to do this and usually don't but I'm going to prescribe you this steroid/hydrocortisone cream that you insert with a tube...use the entire tube...one tube every night" I just nodded and was ready to see my Dr. Rod. So I go back to see him July 12. Let's pray my fissure doesn't turn into a fistula.
(Also...I was scared before we went...getting graphic again, but when I had my movements, they did not smell normal. They smelled like back with the fistula...very infectious smell. *its a nursing term...haha* Well I told him about it and this was NOT GOOD NEWS...he said something about my small bowel was not absorbing so it was putting off a lot of that would give it a very foul and unpleasant you know. Well umm that isn't good that I'm not absorbing...grrr)
Ok...no time to waste
Dr. Rodriguez appointment 1:00 pm
Get weighed...I had just worked up to like 122...back down to 119. Well...Andrew and I were sitting in the room waiting for my favorite doctor to come in. Now this appointment lasted FOREVER! So I might leave out a lot...I'm sorry. When I told him about the fissure being there STILL FOR TWO MONTHS...I promise to me it looked like he was really aggravated, but it might have been my imagination. I think Dr. Rider is afraid because my case is so severe and I think he is afraid to do surgery with me on these treatments...but I mean I'm going to be on them forever. Anyways...so I talked to Dr. Rodriguez about EVERYTHING! I told him about my bad days...I told him about how my body goes nuts wanting treatments...(the throwing up everything, the dry heaving, the using the bathroom more, no appetite, joints worse...bad stuff...its like my body needs them, BUT am still not showing signs of improvement...BUT STILL I think its good it wants them? right? *positive thinking*) Ok. Well we had talked on phone about increasing my Remicade treatments. He looked at me and said "Allison, I really don't want to take that step YET!" He told me how yet again that would be taking ANOTHER LIFE CHANGING STEP! I am on 5 mg/kg as of now. He said he wanted to stick to this for six months. After that we could re-evaluate and then make the HUGE step to the 10 mg/kg. Yet again the risk of cancer with these so I think he is trying to take safe way. Also...my treatments will be now every 8 weeks. We talked about every 6 weeks because my body wanting so bad. Well he told me that, that would be like changing dosage...so we will wait the six months for that as well.
He told me to let him know if my body started showing signs of needing and if it got to the point of body literally desperate we would take the 6 week step before increasing the dosage. Now for not so fun news. He told me he feared that I was going to also have to go back on pills along with the treatments. He told me that we aren't reaching our goal which is (more better days than bad days). He said we wouldn't just yet, but it would be in the future. I was disappointed and he could tell, but I know that he is trying to get me better so I told him I understood.
He is putting me already back on my Zinc pills (two a day) for my ulcers that keep coming in mouth and for the ones in my entire digestive tract (mouth to anus). Also...he is putting me back on Hycosamine (two a day) for my TERRIBLE intestine cramp ups! *the ones I told you I contract into fetal position because it clamps down and won't unlock*. I told him of the cream Dr. Rider put me on and he just nodded. He then did a physical on my tummy. Everywhere he touched and palpated hurt so bad. He also noticed my tummy swollen and real distended.
Ok...so we talked and he went to his therapist mode because he could tell I was just hurting not only physically but emotionally. He knew and told me to talk to him. Well I looked at Andrew and Andrew was telling me with his eyes to just unload, because he knew I needed it. (Dr. Rodriguez is such an amazing remarkable Christian man who loves what he does, and I thank God for him) So I started on him.
1st - I told him I was still upset because I felt like when I went out people were thinking well "nothing is wrong with her" "she looks fine" and I told him...I was like I hear people say *well you've gained weight* *eww well you've lost weight* I told him it's hard because nobody SEES WHAT I GO THROUGH! I told him "Dr Rod...Crohn's is such an undercover disease" People can't see what I feel or see what I look like in there, but you and I know. He looked at me and said "Allison, what does it matter what other people think? You are sick! I know you are, you know you are, he knows you are, so who cares what they think. You have got to quit putting pressure on yourself" *that made me feel better* then he said...what else!!! LOL ITS LIKE HE KNOWS!
2nd - I feel like a failure! *this one got to him* He said "YOU ARE 21! HOW CAN YOU BE A FAILURE?! He said I'm 50 something I'm 30 years your age...if I was sitting at home doing nothing THAT WOULD BE A FAILURE." Then he asked me why I felt this way. I told him about not working, feeling bad about not working and just feeling like people expected so much more and I felt like I was letting everyone down. Yet again he told me that I put too much pressure on myself and that it didn't matter. He said, "Sweetpea I TOLD YOU it would take TIME. When I said it I meant it. I don't know why its YOU. but it is." *he frowned* He went on to tell me that we are trying to get me better but it was going to be a long road. I was going to have to accept that I was NOT superwoman and I would NEVER BE NORMAL AGAIN! Wow...that makes me feel good typing that...ok I'm saying it again I WILL NEVER BE NORMAL AGAIN...THINGS ARE GOING TO CHANGE...I'M GOING TO HAVE TO REROUTE...AND THAT'S OKAY! *I'm shaking typing that* So I started crying and he just hugged me and you could tell it was helping Andrew as well.
Dr. Rodriguez told me that it was going to take time and he knew that. He told me I was still in denial and I frowned and said really? He nodded and said yeah but there was nothing wrong with it. That he understood why I was and it would take one day at a time. I can't remember if anything else happened...so he was like anything else...and I said YEAH! WHAT ABOUT MY DONATION! LOL. He rolled his eyes and clung to the door like a dreaded thing LOL and said "Well let me goooooo get my check book so I can write you a hundddddred dollar donation for your team!" I squealed really and he laughed and said really then closed the door. Well I had to go the lab to GET BUNCHES OF BLOOD DRAWN...EEEKY! I was mad at him when he said we weren't using port first lol...so he met Andrew and I in the hall with a brown paper bag...I thought I had a goodie...LOL UMMM A GOODIE OF ANALPRAM!!!! haha! He was like here are some free samples...this is the stuff Dr. Rider prescribed you. So I accepted nicely and then he said ok...blood time. So he followed in there and I was grr. So he was writing check and the lady was getting my blood out of the evil arm that is destroyed GOOD! :) I told him he was my good luck charm and asked him to come every time...Andrew laughed, and Dr. Rod said "umm...no I don't think so!" He gave me my check Andrew and I told him bye and I gave him his big hug that he always deserves! :) So we left! I felt so much better talking to him, because he doesn't sugar coat ANYTHING! HE IS HONEST!!!!!! Thank you Lord for blessing me with an honest doctor and for helping our relationship to where it is today!
So Andrew and I went to eat...I ate...got sick and threw up in my napkin...wont be eating at that place for probably a few years! That's the evil thing about Crohn's...when something makes you sick...you don't want to eat it for a LOOOONG time...no matter if its chocolate cake or pizza!
So we went to his apartment and finished moving his stuff then headed home! Twas a long day/kind of sad day and we were both POOPED!
I'm sorry it took so long to write, but I have been trying to just rest, been sick, and just junk! Thank you all for everything! If there are errors just overlook them because this was SO MUCH!
Here are a few pictures from us at the beach! :) :)
me with my grandparents at the pavilion
andrew with the gradparents :)
Andrew & I at the beach :) I got a purple
bathing suit because Purple = Crohn's Color
and our team is PURPLE HEARTS! :)
Andrew capturing me scariness :)
Kind of blurry but I love!
The Love of My Life!
Friday, May 14, 2010
I thought Fridays were Happy Days
So...I didn't get to bed til 5 am...woke up at 9 am...only 4 hours of sleep. I finally just left a message of one of my primary care doctors to try to get something. Dr. Rider had given me ambien but it isn't doing to well and he said he really didn't know many more, because he doesn't deal with a lot of that. He had told me to contact my primary, but it has just been so crazy.
Very moment right now my head feels like someone smashed it against a brick wall. My stomach is just rumbling and I'm getting aggravated. My eyes are still really black...that will go away with time. Oh yes...disappointment this morning. I use to be the President of our Student Campus Ministries in College. Well our teacher that was our representative's daughter has come down with leukemia and it is to the point of no return almost. They had a bone marrow drive today to check for matches...my dad and mom were going and I was like I bet I can't...then I started thinking about it and I was like dang...who wouldn't want my immune system...leukemia is dealing with the white blood cells...and mine work amazing so maybe I should go and try. You already know my disease is autoimmune so my immune system is superman and is what is killing my body...ok...so I get excited and we go up there...I see Mr. and Mrs. Gaillard...then I read the sign...if you have an autoimmune disease you cannot participate. I got tears in my eyes. I wanted to actually feel like I could help someone and bam...couldn't...so everyone the most I can do for Jamie (their daughter) is ask you all to pray! and pray that someone that went today will be a perfect match!
Also...I have met a friend through blogging and her name is Kelly. I truly believe God brought us together because she too suffers with a chronic/severe diagnosed Crohn's Disease. She is in the hospital right now with an attack and I ask that you all lift her up in prayer...it is so nice to have someone who understands EXACTLY what you are going through. So in your spare time just lift her name up!!
So as of now this is my Friday...I am plopped on the couch with mr. miyagi waiting for the headache to subside. I had to run to the bathroom a second ago becuase I just got sick and started gagging again...didn't throw up but sure almost did...I have no clue what is going on...
I am going to see BOTH Dr. Rodriguez an Dr. Rider the 24th of this month. With Dr. Rodriguez we will discuss the Remicade and figure out what my routine needs to be and if the dosage needs to be raise...we have pretty much already figured out that I will need it sooner than most people...Dr. Rider was saying about every 6 weeks when most get it every 8...I'm thinking every 4...because that is when my body starts doing its crazies...so...that will be with Dr. Rodriguez. With Dr. Rider we will reassess my internal fissure and check it..make sure its not a fistula...see its size again...see if its healed no healed...all of that...if it is still there this time I'm pretty sure we are going to do the surgery so it doesn't matter to me really...whatever I have to do to get better I'm all for it!
Ok my sweet blogging friends...be blessed :) I love you all and thank you all!!!!
Very moment right now my head feels like someone smashed it against a brick wall. My stomach is just rumbling and I'm getting aggravated. My eyes are still really black...that will go away with time. Oh yes...disappointment this morning. I use to be the President of our Student Campus Ministries in College. Well our teacher that was our representative's daughter has come down with leukemia and it is to the point of no return almost. They had a bone marrow drive today to check for matches...my dad and mom were going and I was like I bet I can't...then I started thinking about it and I was like dang...who wouldn't want my immune system...leukemia is dealing with the white blood cells...and mine work amazing so maybe I should go and try. You already know my disease is autoimmune so my immune system is superman and is what is killing my body...ok...so I get excited and we go up there...I see Mr. and Mrs. Gaillard...then I read the sign...if you have an autoimmune disease you cannot participate. I got tears in my eyes. I wanted to actually feel like I could help someone and bam...couldn't...so everyone the most I can do for Jamie (their daughter) is ask you all to pray! and pray that someone that went today will be a perfect match!
Also...I have met a friend through blogging and her name is Kelly. I truly believe God brought us together because she too suffers with a chronic/severe diagnosed Crohn's Disease. She is in the hospital right now with an attack and I ask that you all lift her up in prayer...it is so nice to have someone who understands EXACTLY what you are going through. So in your spare time just lift her name up!!
So as of now this is my Friday...I am plopped on the couch with mr. miyagi waiting for the headache to subside. I had to run to the bathroom a second ago becuase I just got sick and started gagging again...didn't throw up but sure almost did...I have no clue what is going on...
I am going to see BOTH Dr. Rodriguez an Dr. Rider the 24th of this month. With Dr. Rodriguez we will discuss the Remicade and figure out what my routine needs to be and if the dosage needs to be raise...we have pretty much already figured out that I will need it sooner than most people...Dr. Rider was saying about every 6 weeks when most get it every 8...I'm thinking every 4...because that is when my body starts doing its crazies...so...that will be with Dr. Rodriguez. With Dr. Rider we will reassess my internal fissure and check it..make sure its not a fistula...see its size again...see if its healed no healed...all of that...if it is still there this time I'm pretty sure we are going to do the surgery so it doesn't matter to me really...whatever I have to do to get better I'm all for it!
Ok my sweet blogging friends...be blessed :) I love you all and thank you all!!!!
Thursday, May 13, 2010
Third Treatment
Ok, now how funny is this. Mrs. Rene had told me she was coming over. In my head I was thinking oh...it's time for my flush. Well she said we were waiting for the medicine. I WAS GETTING MY THIRD TREATMENT! I had told my mom yesterday "Mom...I can't tell the treatments are working, but it's like my body is ready for one." In the last post I was talking about how bad and crazy things have been getting...well along with those things the biggest sign is I get terrible headaches and can't sleep...it's like my body is ready. So again this morning I told my mom the same thing. So when I found out it was my third treatment...I was happy in the sense that my body would get what it wanted, but not happy in the sense because I know what the treatments do to me.
I had searched on youtube and mom and I had found a few videos of Remicade infusions...I was like hmm...I want to try this. I didn't actually film during the treatment because Mrs. Rene and I had too much to talk about, but I did film the prep and start of the treatment and after the treatment. IT IS AMAZING THE DIFFERENCE!!! Dad and I compared my eyes and after the treatment they are completely black and swollen...my face, under my chin, my neck...all is swollen. I'm teling you...this stuff is serious! I just wanted you all to have another true look into my little world! Not for my sympathy...heavens no...remember that this blog is my testimony for the One who loves me more than anyone ever could. This is for my Jesus...so that everyone can see that yes, trials may come, but He is the only way to get through them! He will bring you out of them...and if He doesn't right away...it is ok...the Bible says that on Earth we will be persecuted...this is not my heaven nor will it ever be. I will go to my perfect place when I am away from this earth. Sorry I got off on a sermon...just reminding you this story is dedicated to My Jesus...because He is the only reason I am still here as of right now. Too many close calls...so I guess you can say Allison Kelly is a miracle. -that really makes me smile...even in my physical pain and emotional strain right now...it makes me smile-
On the videos it may be hard to hear everything and I apologize...just cut up your volume and listen listen. This is getting my port, prepping my port-making it sterile, accessing the port, flushing it with saline and heparin (blood thinner), and then getting the Remicade hooked and connected, and lastly connecting the Remicade to the IV Pump and programming it to do its job. This infusion treatment lasted about 3 hours all together. Again Mrs. Rene is my nurse. She wasn't even working today, but worked a half just to do my treatment. I tell her she is my angel from My Jesus :)! During the infusion you feel the Remicade going through...you can even smell and taste it almost. You first begin to feel the exhaustion -that was about 45 minutes in this time. Started swelling about 30 minutes in along with the throat so I chugged some Benadryl. About an hour into it the pains of the joints started to I took my Darvocet. I had forgotten to take the two before the treatment because ummm I was retarded and thought it was a flush...remember :) lol. Okay....so after treatment she flushes port again with saline...then with heparin...and discontinues it and covers it with gauze. Although it is a noncoring needle which means it seals up as the needle is pulled out...blood still can seep out with the discarding of the needle. So that is the process and here are the two videos.
I had searched on youtube and mom and I had found a few videos of Remicade infusions...I was like hmm...I want to try this. I didn't actually film during the treatment because Mrs. Rene and I had too much to talk about, but I did film the prep and start of the treatment and after the treatment. IT IS AMAZING THE DIFFERENCE!!! Dad and I compared my eyes and after the treatment they are completely black and swollen...my face, under my chin, my neck...all is swollen. I'm teling you...this stuff is serious! I just wanted you all to have another true look into my little world! Not for my sympathy...heavens no...remember that this blog is my testimony for the One who loves me more than anyone ever could. This is for my Jesus...so that everyone can see that yes, trials may come, but He is the only way to get through them! He will bring you out of them...and if He doesn't right away...it is ok...the Bible says that on Earth we will be persecuted...this is not my heaven nor will it ever be. I will go to my perfect place when I am away from this earth. Sorry I got off on a sermon...just reminding you this story is dedicated to My Jesus...because He is the only reason I am still here as of right now. Too many close calls...so I guess you can say Allison Kelly is a miracle. -that really makes me smile...even in my physical pain and emotional strain right now...it makes me smile-
On the videos it may be hard to hear everything and I apologize...just cut up your volume and listen listen. This is getting my port, prepping my port-making it sterile, accessing the port, flushing it with saline and heparin (blood thinner), and then getting the Remicade hooked and connected, and lastly connecting the Remicade to the IV Pump and programming it to do its job. This infusion treatment lasted about 3 hours all together. Again Mrs. Rene is my nurse. She wasn't even working today, but worked a half just to do my treatment. I tell her she is my angel from My Jesus :)! During the infusion you feel the Remicade going through...you can even smell and taste it almost. You first begin to feel the exhaustion -that was about 45 minutes in this time. Started swelling about 30 minutes in along with the throat so I chugged some Benadryl. About an hour into it the pains of the joints started to I took my Darvocet. I had forgotten to take the two before the treatment because ummm I was retarded and thought it was a flush...remember :) lol. Okay....so after treatment she flushes port again with saline...then with heparin...and discontinues it and covers it with gauze. Although it is a noncoring needle which means it seals up as the needle is pulled out...blood still can seep out with the discarding of the needle. So that is the process and here are the two videos.
I Don't Think May Likes Me
So my life has been just a little crazy lately. Last Wednesday I had gone to the store to help them for just a little. When I went to leave I ended up getting in a wreck. I was driving down Forest Avenue and a lady pretty much ran through a stop sign. There was nothing I could do so we t-boned. Thank the sweet Lord that I was in my mother's suburban because it saved my life. (1-Lady had suspended license for 13 years and 2-was uninsured). Well the wreck threw my Crohn's into a crazy. As you all know it is an autoimmune disease, but it is also an inflammatory disease. So the wreck set it OFF! I wasn't going to go in the ER, but one of my neighbors told me I needed to...he knew how bad my Crohn's was and was worried about my port and all.
So go to the ER. When we were sitting in there I said "Ok God...I know everything happens for a reason...I may not understand, but I love you God and I am not mad." I then thanked Him for keeping me safe. I won't get into all of the ER business because I won't be very nice about it all. Good part however is that I will say that I pretty much got anti-inflammatoried up (that is a made up word by me and I like it so there)-I got Decadron and Toradol- As of today my left knee and right ankle are still bruised and bothering me, but they are getting better. My tummy on the other hand has been as mean as can be. I don't know what it's like to have a flat stomach anymore. The last two weeks it has swollen to the size of 9 months pregnant...no lie...and will refuse to de-swell...yet again another made up word.
Haha - let's back track for two seconds. After the wreck I was in a pretty good state of shock. So mother and I are sitting in the room and I said "Well Mom, I MUST be doing something right as a Christian, because Satan is just after me!" We both started laughing and just nodded. -sweet Mommy daughter sad/upset/funny moment...priceless-
Ok...so a lot has been going on with my stomach. I'm talking about a wide range...I will name - swelling, burning, rolling, stabbing pains, throbbing pains, spasms to the point you can see them -it looks like a baby kicking-, sinking in on one side and swelling on other- EVERYTHING it can do...it is doing. So that is kind of just short case of all of that. Now for a little deeper we shall talk about a few days.
Saturday - Relay for Life. I woke up feeling TERRIBLE. I don't even think that word describes. I couldn't eat. My stomach would get nauseated at the word. My stomach was killing me and my family and I had to sing. Get up to the park and I'm still feeling terrible. Still couldn't get anything in my stomach. I kept gagging like I was going to throw up, but didn't have anything to come up. It was like dry heaves all day. I kept sipping on coke trying to settle. Finally I started feeling slightly better mid day and finally was able to put something in my stomach around 5. Not good day, but Relay for Life was amazing. We got to spend time with our friends the Revelators!
Yesterday - Woke up...went into store to do a few monograms. About 9:30 I ran out of the office into the bathroom and threw up. Number one I hadn't had anything to eat...so it was nothing but acid and came out in foam. I am so not joking. I threw up two more times and it had green this time so I knew I was to the bottom of my stomach and it was bile. I was so thankful that unlike the other time I didn't throw up stool. Well after that mom tried to get me to eat, but I couldn't. I felt terrible. I just started crying and Mrs. Janice came in and hugged me. So about an hour later I run as fast as I can to the bathroom again, but this time I had to do the other. Ok...so completely emptied out and still don't feel well enough to eat. Around 12:30 Andrew came to get me and we went somewhere to eat lunch...I attempted and was able to get a little down. Went back to the store to monogram a few more things. My throat started swelling up. I was like oh no...so I grabbed the Benadryl and took two. Well it was to the point I was having trouble breathing so Andrew and I rushed home. When we got home I was headed to get the liquid Benadryl to take some more, but I ran to the bathroom and started gagging again. I wasn't able to get hardly anything up except acid again. I stayed in there for a little while then Andrew got me to take some more Benadryl. Didn't get much sleep at all.
Will post today's actual blog in another post...just catching everyone up!
So go to the ER. When we were sitting in there I said "Ok God...I know everything happens for a reason...I may not understand, but I love you God and I am not mad." I then thanked Him for keeping me safe. I won't get into all of the ER business because I won't be very nice about it all. Good part however is that I will say that I pretty much got anti-inflammatoried up (that is a made up word by me and I like it so there)-I got Decadron and Toradol- As of today my left knee and right ankle are still bruised and bothering me, but they are getting better. My tummy on the other hand has been as mean as can be. I don't know what it's like to have a flat stomach anymore. The last two weeks it has swollen to the size of 9 months pregnant...no lie...and will refuse to de-swell...yet again another made up word.
Haha - let's back track for two seconds. After the wreck I was in a pretty good state of shock. So mother and I are sitting in the room and I said "Well Mom, I MUST be doing something right as a Christian, because Satan is just after me!" We both started laughing and just nodded. -sweet Mommy daughter sad/upset/funny moment...priceless-
Ok...so a lot has been going on with my stomach. I'm talking about a wide range...I will name - swelling, burning, rolling, stabbing pains, throbbing pains, spasms to the point you can see them -it looks like a baby kicking-, sinking in on one side and swelling on other- EVERYTHING it can do...it is doing. So that is kind of just short case of all of that. Now for a little deeper we shall talk about a few days.
Saturday - Relay for Life. I woke up feeling TERRIBLE. I don't even think that word describes. I couldn't eat. My stomach would get nauseated at the word. My stomach was killing me and my family and I had to sing. Get up to the park and I'm still feeling terrible. Still couldn't get anything in my stomach. I kept gagging like I was going to throw up, but didn't have anything to come up. It was like dry heaves all day. I kept sipping on coke trying to settle. Finally I started feeling slightly better mid day and finally was able to put something in my stomach around 5. Not good day, but Relay for Life was amazing. We got to spend time with our friends the Revelators!
Yesterday - Woke up...went into store to do a few monograms. About 9:30 I ran out of the office into the bathroom and threw up. Number one I hadn't had anything to eat...so it was nothing but acid and came out in foam. I am so not joking. I threw up two more times and it had green this time so I knew I was to the bottom of my stomach and it was bile. I was so thankful that unlike the other time I didn't throw up stool. Well after that mom tried to get me to eat, but I couldn't. I felt terrible. I just started crying and Mrs. Janice came in and hugged me. So about an hour later I run as fast as I can to the bathroom again, but this time I had to do the other. Ok...so completely emptied out and still don't feel well enough to eat. Around 12:30 Andrew came to get me and we went somewhere to eat lunch...I attempted and was able to get a little down. Went back to the store to monogram a few more things. My throat started swelling up. I was like oh no...so I grabbed the Benadryl and took two. Well it was to the point I was having trouble breathing so Andrew and I rushed home. When we got home I was headed to get the liquid Benadryl to take some more, but I ran to the bathroom and started gagging again. I wasn't able to get hardly anything up except acid again. I stayed in there for a little while then Andrew got me to take some more Benadryl. Didn't get much sleep at all.
Will post today's actual blog in another post...just catching everyone up!
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