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Sunday, September 12, 2010

Yet Again, WHERE IS MY DOCTOR!?!?!

Ok....so I have been telling most of you that I have been trying to get a hold of Dr. Rodriguez and he has yet to return my call!

September 2, 2010 - Treatment Day. I had written and told some of you that my chemo (Remicade) was going to be changed from the 5mg/kg dosage to the 10mg/kg dosage. The time was going to be decreased from every 8 weeks to every 6 weeks. Well on treatment day Mrs. Rene let me know that she had finally got a hold of Amity (Dr. Rodriguez's chemo nurse) and she had stated that the order for the Remicade was no longer in effect. I don't know how it was worded...but the point is the Remicade wasn't changing and was still 5mg/kg and every 8 weeks.

I was mad. Why? Dr. Rodriguez had told me that he had already sent in the order. He also said that he was ordering it 1- because he was scared I was building antibodies (raising dosage would change amount that body was used to so if antibodies were building it would be a change and would throw that off from happening anytime soon. 2- I'm not getting better so we needed to raise to the chemo so hopefully I would begin to feel better...I'm not going to say remission, because we are nowhere close to that....we just want me to feel better.

Ok so first problem - chemo not changed.

Mrs. Rene then informs me that the Cura-Scripts (whatever its called) did not send my chemo. (With this stupid company evidently you have to answer when they call the few days before and say yes to sending the order. Well that is ridiculous because if a doctor gave an order and it is approved by insurance...you HAVE to do what the doctor says...you don't call the patient asking are you ready. That is crazy. Whatever doctor says...goes!)

Now let me explain this. Originally Blue Cross Blue Shield (BCBS) had sent an order to Vital Care (the IV company Mrs. Julie is with) to be my Remicade supplier. They pre-mixed my chemo, brought it to the house, provided the pump that enabled me to walk around, provided the huber needle for my mediport, provided us with the heparin and normal saline (already drawn up as well), and always brought me a sweet little goody bag. Well they supplied me for a whole three treatments. After the third treatment BCBS also sent an order to this stupid place called Cura-Scripts or something like that. Well this company sent the vials of powdered Remicade and that was ALL! Mrs. Rene would have to mix on site, would have to mix with the bag of saline, had to supply the huber needle for my port, had to supply my heparin and my saline flushes, we had to HANG MY BAG OF FLUIDS WITH THE REMICADE FROM A HANGER ON A NAIL! It was just ridiculous. This company was just a prescription supplier. I didn't need a prescription of Remicade I NEEDED A TREATMENT OF REMICADE!

So anyways...BCBS never stopped the order to both places. So Mrs. Julie's company had a Remicade from the time both orders got sent. Well that company just stopped the order even though they had the order because they knew the other company was sending and they would be out money.

Well when they didn't send my chemo on the 2nd...luckily Mrs. Rene was able to get a hold of Mrs. Julie's company who still had that Remicade from that previous time. Well they saved my life because they were able to get a hold of it. All of us were just going to tell BCBS in sweet terms "Get over it" (but in worse words).

Ok...so that was the second problem.

So today which is 1 week and 3 days after treatment. I feel like a train hit me but in a worse way. I am swollen everywhere and I have called the Emergency on call doctor at Rodriguez's office. My throat was closing as well as everything else swelling so I just took some benadryl. If it gets worse he told me to go to the ER. Well we are waiting on him to call back....

We don't know what is happening right now, but we are very scared. I as a nurse am thinking one of two things:

Either I am on so many medicines that my kidneys are failing (all the swelling, plus the fact that I'm having trouble urinating...I'm having urinary retention. I have to push down like I'm having a bowel movement to be able to push the urine out)

or Either it is that I built antibodies to the 5mg/kg and I am having a bad reaction. If this is the case I will not be able to take chemo anymore and I don't have an option left because with me the chemo and upping the dosage was my last option of treatment...if this is case then I will just be put on more pills that don't work and eventually it will just take surgeries to fix problems that get worse.

So you all see where I'm at right now. I am fine...just needing answers, because whatever is happening doesn't seem too wonderful right now. I'm swelling all over for a reason. It hurts to move and it hurts terribly to get up and walk. My feet feel like they are about to pop when I walk on them....

As a nurse I know that while symptoms are worse I need a way to prove so I felt smart because I took pictures. Now you will see pictures where I push my finger to my skin and then the next picture is where I removed my finger. This shows the pitting edema. (fluid and swelling of the skin and what the depth of this swelling is/pretty much how bad) (I don't feel like explaining it all...you just will know when you see) When you press normal skin it goes straight back to what it looked like before you pressed it...Well my skin is living an indention for a little while...


What I'm feeling right now : Well I just feel bad. I feel tired. My fingers are killing me, especially at the joints. My wrists, my face (canker sores in mouth), the bottom of my feet on the pads, my knees, my hips, my legs...do you get the point...EVERYWHERE! and that is with my pain medication...its crazy

No more talking...these pictures say it all! (Also..the pictures of the pills are JUST what I had to take THIS MORNING...not all the pills for the day!)


I'm ok... I love you all...don't think I'm upset...I just don't feel very well writing this and I love you all and just wanted to keep you all up to date with me...just don't feel good! I love y'all and pray that the doctor calls soon!




























































Wednesday, September 1, 2010

Hopefully Just the Start of Me Becoming Pain Free

So yesterday as you all know was a very LONG and EXHAUSTING day.

First off, Dad, Andrew, and I got up very early that morning to head to Mobile. Papa Bear is what I call Andrew's dad for future reference. Papa Bear was having a heart cath and had to be at Mobile Inifmary at 8 AM. We arrive and meet Mrs. Judy in the admission waiting room. After Papa Bear finishes his papers we go to the cardiac floor. His male nurse whose name was David was a very nice man. I was very pleased with the people taking care of him. It was probably around 10 30 when he got taken back. They told us that we should receive a call in the room 30 minutes after them taking him back. They would let us know if anything was found or if the procedure was finished.

Thirty minutes later I answer the phone. We were notified that they had found a blockage. We all had know that would happen so we were not alarmed...just praying for safety. I asked the percentage but at the time he said the doctor was not sure, but they would be placing a stent. They said give about another hour, so we all took that opportunity to go to the cafe below and eat. Dad, Mrs. Judy, Andrew, and I ate and then headed back up. It was about 12 at that time and we knew that we needed to soon be heading across the street to the Physicians Pain for my appointment. Papa Bear comes back. We later found that it was a 75-85% blockage...it took 3 stents for that one blockage! Now if you have never seen Andrew's dad...he is a BIG man. We have heard so many stories about his strength...my nickname for him is Rambo! :) Well we gave him hugs and called mom. She was already on Springhill so Dad, Andrew, and I left the hospital and met her at the Physician's Pain building.

When I walked in I looked around and honestly just wanted to cry. I had already been feeling bad that morning, but hadn't told anyone. My stomach was already probably to the size of 6 mo. pregnant when we arrived.

So as I'm looking around, I see one woman who can't keep her eyes open. I see a man who looks like he was on drugs. I see another man and woman who look like they are out of it and my eyes just got wide. Andrew noticed and asked what was wrong....I just told him to look around.

In my head I was going *Lord, I am only 21 years old. Lord I suffer with pain and I need help, but oh Lord you see these people. Most are elder and most of them look completely out of it* The appointment time was set at 1.

Finally we get called back and they let everyone go back with me. I was already flared on my chest and face so I was blood red. I was running a temperature and my blood pressure (all of you should know the norm by now lol 80/60) was 130/92. I knew I was in pain, but it was like I was blocking it out from being so nervous. When she asked my pain scale, I told her a "4" LOL! Oh goodness...there was no way it could have been a "4" my adrenaline was just easing it to make me have no clue the true intensity! *Makes me laugh out loud :)*

Ok. so we go back...wait more. A man walks in. I was assuming it was Dr. Couch, but it was not. His name was Justin. He is the nurse practioner who works with Dr. Couch. He assesses and goes through the papers and gets an overall report so he can sum everything up for the Doctor. He was very kind and empathetic. (previous to this I had to fill out a big pack of papers telling what kind of pain, had to color where the pain was on body graph, describe the intensity, the type, the duration....etc etc...you get the point).So he was looking through my chart asking questions. It was even kind of cute because he mentioned he and Dr. Rodriguez worked out together and he would more than likely see him the next day (which is today)...yet again thoughts *OH LORD...more doctors to talk about me LOL* As I said he was very empathetic and very kind. He checked my abdomen...by that time it was swollen to a 9 mo. prego belly. You could tell he was amazed. He checked my joints and I explained about them. I explained my history of how we could trace back problems to 3 and that we were literally trying to make up for all those years untreated. I showed him my fat fluid filled knees. Just everything yall....I could draw this out for eternity...so I will stop at that.

Then we started talking in depth pain. I told him what I had taken. He asked about pain everday and I told him yes. I told him that I had become numb to so many types of pain. I also explained to him that when I was in pain and took my dilaudid...I would not shut up talking...reason being it's that I'm so relieved and happy because I didn't really realize how much pain my body was truly was in. I got a little emotional...the parents threw in some things and Andrew listened and took everything in.

Well after waiting little bit longer, had to urinate in cup. Dr. Couch walks in. Now before this...I had heard so many rumors about pain management doctors...everybody had talked it up so negative. What they forget is that I am a nurse and I know what types of doctors have what types of personalities and why they have to have them.

Pain doctors are not meant to be emotional and sympathetic to you. They deal with pain...something that is not understood by anyone unless you have had extensive training such as they have. Something that if treated certain ways can change a person, can make a person addictive, can make a person sluggish, can make a person mean...pain can cause so many things, but yet pain treatment can also cause so many things....with this the doctor has to have a cut/dry personality to make sure no emotional attachment is made. It is like a strict business...I hope I'm explaining it in a way you all can understand. It's not that they don't care...if they didn't they wouldn't have chosen that type of medical branch. They just know that they are in control of you in so many ways with taking on treating your pain needs.

So when he walks through the door like I said...very straight forward personality. No time for talk...listen listen explain. Asked what I used when in hospitals. He saw on papers where I had, had an adverse reaction with Morphine. I told him I took Demerol. Immediately his eyes darted and he then went on to explain how Demerol is not good if used routinely. I have not used it routinely...mine has just been a hospital and ER management. He went on to explain that I am very lucky, because with chronic pain, Demerol can do bag things. He said that they can cause seizures, but not the type where you fall on the floor and bite your tongue...he said it was the type where you fall on the floor and die. My parents and I had a wake up call to this. He then also told us that Demerol was invented by Hitler and his scientists. It was made to give to their soldiers for battle. It made them feel invincible. I nodded my head. See everyone knew I got ill on Demerol. It did make me mean, but in all honesty, it was like so much relief from a pain I thought would never go...that when people talked I got ill because I was so relieved I did not want to be bothered. So that was an interesting fact and story.

More listen listen and then looks straight at me "Is this interferring with the quality of your life?" *straight to the point* I was shocked....I told him "It says it on the papers" (see when I filled them out it came to a part where it asked what all parts it interferred on...almost everything was a 9 or 10...the pain is taking away Allison) I then started crying after I said that and said "YES! I'm tired of hurting...I'm in pain all the time" Mom then got a little emotional and said "I don't have the same Allison I had 9 months ago" That stabbed my heart when she said that. It hurt so deep. I know I'm not the same and that hurts because I will never be able to go back and change, I will never be able to say I'm Crohn's free. I will in heaven, but not here.

So after this, this is when I just felt so much peace from God. I was thinking this guy doesn't believe me...and then for 5 seconds Dr. Couch let his guard down and let a slight bit of emotion come through. "I can see it. I can see it in your eyes that you're tired, that you're in pain, that you're tired of being in pain, tired of hurting." For those 5 seconds I just wanted to fall to my knees and thank God. Here a man that studies and knows what pain is better than anyone else...could SEE...he COULD SEE! I wasn't crazy, I wasn't making it up, to all those people that said I wanted a high, to all those people that didn't believe me...it just allowed so much built up emotional pain release. Who cares if they didn't believe or know the truth...the man that knows it better than anyone KNEW and STILL DOES! THANK YOU LORD! THANK YOU FOR LETTING SOMEONE SEE MY INSIDE ON MY OUTSIDE! It's so hard having people tell you, oh you look so good. Yes I might, but oh the inside of me hurts so bad and feels so bad. (I am just bawling typing this, because its like a release of just so many emotions. Happy emotions, but bittersweet. I got help...for once I got help!)

Ok...calming down. So after this we went on to discuss treatment. We are stopping the Dilaudid and Darvocet. Here is what I will be on and what he gave me.

Fentanyl Patch 25 mg - He said that if by this weekend the 25 mg was not making the pain go away to go ahead and put another patch on making it 50 mg. Every 3 days I change the patch.

(copied from website - strong prescription pain medication for moderate to severe chronic pain that can provide long-lasting relief from persistent pain. Through its innovative patch technology, DURAGESIC® delivers fentanyl, an opioid pain medication, into the body slowly through the skin, where it works to relieve pain for up to 3 days (72 hours).DURAGESIC® is strong medicine for serious pain. The DURAGESIC® patch should only be used when other less potent medicines have not been effective and when pain needs to be controlled around the clock.)


Ultram 50 mg - 3-4 times a day

(copied this from a website for you all - Tramadol is a man-made (synthetic) analgesic (pain reliever). Its exact mechanism of action is unknown but similar morphine. Like morphine, tramadol binds to receptors in the brain (opioid receptors) that are important for transmitting the sensation of pain from throughout the body to.)

Zipsor 25 mg - can take up to 4 a day He really wanted this one because he said that it would be good for my Crohn's. You don't even have to digest. It is a gel and once it reaches the pH of your intestines...it bursts and is absorbed! How neat...but oh HOW EXPENSIVE!

(Also copied this - Zipsor liquid-filled capsules contain the nonsteroidal anti-inflammatory (NSAIDs) medicine diclofenac. This medicine works by reducing hormones that cause inflammation and pain in the body. Zipsor liquid-filled capsules are used to treat mild to moderate acute pain.)


Also. He is going to check with insurance first then set up an appointment. This is my 4th treatment for pain. They will take a needle and go in on both my left and right side of my lower lumbar and inject a medicine directly into the spinal nerves that control my abdomen. This medicine deadens the nerves and will give relief supposedly up to 2 months. If I like it...they can go in and deaden and burn the nerves.

Now. After he told me my four types of treatments. He said that the patch could be upped as we find what works. He then said if this system of treatment doesn't work...he said I don't tell most of my patients this, but after this THERE IS HOPE! I couldn't believe my ears. The next step after this IF this doesn't work...which I am very positive about it...we will go to a knew technology little bugger.

It is a pump planted under the skin. This pump releases medicine. What is special about it is that it is 1/100 of a dose you would take orally. This means that it is less toxic, less medicine, but more effective. See with morphine pumps they release the medicine directly into the bloodstream and it is given in full dosages. With this pump (it is called a CODMAN 3000) the catheter is placed in your intraspinal space. So that means it is directly going to your spinal which is fast relief and like I said less drug, but more effective. I'm going to copy and paste so you can read more. Anyways...he gave us a DVD and a pamphlet. He just said he wanted us to go ahead and be prepared and researched on it in case he wants to change to that therapy later. He said he has high hopes of this if our routine we have set up now doesn't seem to be controlling.

He then went on to talk about my abdoment pain and talked about pancreatic cancer patients and how they have the abdomen pain. So pretty much that is how he is treating me. Since I'm not showing wonderful signs of improvement with the Crohn's, we are going to make sure I am comfortable.

Here is what I copied about the CODMAN 3000 pump...you can research it if you like! :

Because life shouldn’t require batteries.
The CODMAN® 3000 drug pump is a proven implantable drug delivery system for the delivery of medications to treat chronic pain, severe spasticity, and cancers of the liver. This elegantly simple device features an inexhaustible power supply, and does not require the frequent replacement surgeries associated with battery-powered pumps.

FLEXTIP® Plus Intraspinal Catheter
The FLEXTIP® Plus catheter is used when the CODMAN 3000 drug pump is implanted for the delivery of medication to a patient’s intraspinal space, such as in the treatment of chronic pain or severe spasticity.

This durable catheter is differentiated from traditional silicone catheters by its innovative design, which includes a titanium-reinforced inner coil to resist kinking.

Key features include:
•19 Gauge catheter with outer polyurethane jacket
•Titanium-reinforced inner coil for maximum durability and kink-resistance
•Wide variety of anchors available



Also we are setting up MRI of spine just to make sure that the pain from my back is nothing but the Crohn's....just to make sure nothing else wrong besides that, since a lot of the joint pain is there. Now my joint pain includes my knees, hips (which pop out), back, neck....

After we finished there, mom and dad headed for home to fill prescriptions. Andrew and I went back to the hospital and stayed with Papa Bear and Mrs. Judy for a little while. Went to eat, got her something. Stayed again a little. Went to visit Mr. Walt (my bebop) and Mrs. Shirley. Got a phone call...the PRESCRIPTIONS WERE NOT SIGNED!!! I was so upset. We then figured that when Papa Bear was released they could go by and pick up rewritten prescriptions...they are listed on my papers (as future in laws) which means they are allowed access to all my records...access to if something happens. You know all that good stuff. so I was VERY thankful that I had listed them and that God had that aligned the way He did. See not just anyone can go and pick up prescriptions for you at a pain management...and truly you are supposed to have the pain patients drivers license. We had left a message however and the nurse said that if their name was on my paper that would suffice since it was their mistake! So they dropped my prescriptions to me at Gifts and Giggles and I placed the patch on at about 2 00 pm today.

Dr. Couch said it would take 10 - 12 hours to kick in so I had gone ahead and took 2 dilaudids this morning because I was hurting pretty bad. So I'm sitting at the store right now. I have a treatment tomorrow at the hospital. Mad about that because remember Dr. Rodriguez said he was raising chemo and cutting shorter...well got news that he isn't doing that and he never informed...ok calm down not getting into that! So I have a treatment tomorrow and we have about 60 soriety bags that have to be done and I didn't want Mrs. Becky having them all on her so I told her I would stay later tonight to get as much done since I will be out the rest of the week resting from the bittersweet treatment.

I love you all! Without your prayers yesterday, yesterday would not have gone as well as it did! Thank you for prayers for Papa Bear. He is safe at home right now and recovering every second! We are so thankful God watched over him and still continues to! Just yet again to all of you that sent up prayers...THANK YOU! I love you all! I am hoping that this is the start to ALLISON MARIE KELLY BEING PAIN FREE!!!!! I know it will take time for everything to build up in my system and for the pain to start truly being relieved but I am just so excited knowing that this is just the beginning!

Yet again I LOVE YOU ALL AND GOD BLESS!

Sunday, August 29, 2010

Prayer Please!

So I caught you up with the past appointment and test from Monday. Well Thursday mother and I had a female appointment. The appointment was not til 2:15 so we were going to work that morning until Mrs. Janice got in to relieve us. So the day called Thursday started out ok...and got BAD!

As you all know Crohn's is never the same...it can never make its mind up. People always ask..."isn't Crohn's where you go the bathroom A LOT?" To those people I would like to kindly punch them in the stomach and then sweetly smile. :)

I'm sorry that, that had to be violent, but right now it is taking everything I have right now to stay stable and not break down completely. I just took two dilaudid and am praying that I find amazing relief. The pain I feel in the right side of my abdomen and rectum is not a fun feeling.

Now let me explain what FIRST happened Thursday and then I will explain that it happened a SECOND TIME TODAY!!!

Now this will probably be one of my most graphic blog entries but this blog was created to post the reality of what this disease is and what it does to not only my body but to my emotions and to the relationships in my life. So if you are not prepared to read VERY GRAPHIC material then just stop here and know that I love you and COMPLETELY understand.

Well...first my appetite has been starting to go again. That means that I don't eat a lot...forget that I didn't eat and have to be reminded by someone TO EAT! With that being said I had posted a while back that when I go to the bathroom the only way I know now that I need to go is I will get a deep stabbing pain in my rectum. Well I felt this pain come on Thursday about 10am. Well I immediately go "UH OH" and run to the bathroom and from there is when I seriously saw my life flash. When I say I saw my life flash I am not joking...not even in the least bit.

So I began to try to defecate. Yet again in my head I go "UH OH". Well with it being so long after a treatment I usually get very loose movements. I had been having loose movements so why would I take my Miralax. That would possibly leave me with slight incontinence. So I had not been taking it because there was no need. Well I felt the impaction and immediately got upset. I tried and tried pushing and could get nowhere. After attempting for about 10 minutes I began crying. By this time most of the impaction had moved to the second sphincter. See in your anal canal you have two sphincters. The one further up is involuntary...this means that you have no control and your sphincter naturally pushes it into the canal. The second sphincter is the one that we use to push and hold our movement in or push it out. Now that you know a little of that anatomy lets just say that my movement was passed the first sphincter but was too large and impacted to pass through the second. So I tried to not strain and hope that it would go back up to my intestines so that I could get off the pot pull up pants and leave the store to go get Miralax and chug chug chug.

Well I tried to stand and was still noticing that I could not stop straining. At that point I knew it was stuck and I was going to have to do as I did once before and do a digital fecal removal. (only way I know how to do this is because I AM STILL a nurse...just cant be a practicing nurse). So at this point I felt myself literally going in and out. I would be there one second and the next I would black out...so everytime I would come to I would realize I was crying...so finally I started screaming and crying for mom. She peaked in and she immediately knew...I said KY JELLY AND GLOVES FAST! She ran out and Mrs. Becky peaked in. Her face was shocked...door closed went out...came to and Mrs. Becky had a wet rag putting it to my face. She had said that I was so white you couldn't see my lips...I peaked up in the mirror and I was as white as the letters in this post. My veins were bright blue and bulged. After she closed I started talking to God. "God...I'm going in and out. Now I don't know what to do God...but I know I'm going in and out and I can't make it go back up. Now God...you can take me if it's your will, but Lord I can't strain anymore or do this much longer. I can't wait on God Mom...please help if if its your will to gather every strength and get this out." I started crying harder and literally drew up every strength I had knowing that I didn't have time to wait for mom to be back. I don't remember how but I passed what felt like twins. I am not exaggerating the least bit. After I passed I praised Him and cried. I broke out in a cold sweat and immediately felt the cutting deep pain. After sitting and trying to get my vagals and blood pressure calmed I composed myself and got my pants on and washed my hands. When mom made it back I let her know that I had passed it somehow someway. I started shaking and grabbed my jacket. Mrs. Becky and Mom were so good to me.


I'm going to stop at that. It was terrible...that's all I can say. So the female appointment went well. My doctor was so empathetic to everything that was going on. She gave another prescription of the ring and told me to make sure to keep it so that I didn't have a cycle. We still think I have endo and she doesn't want that to be not controlled since the Crohn's is not. She was so sweet. I even met a receptionist who has Celiac Disease. Her daughter also had been diagnosed but she was pretty sure she did not have that but indeed has Crohn's. We put together our signs and symptoms and it sounded dern close.



So TODAY - Slept in because my body needed sleep. Woke up and at 3:00. It hit again. Why I'm getting impacted I don't know. So after today I'm going back on Colace, Miralax and whatever else I want. Well today was BAD. I couldn't even draw up strength for this passing. So I prayed to God again. Well at home I have everything I need so yall...this is so embarrassing. But my nurse side came out and I gloved up got the KY and depacted what was literally about a foot and a half of impaction. I have taken pain medicine and know that more will follow very soon.

Just please pray for me. I seem to not be getting better, nor is anything working out it seems...I know it is strictly the devil and I am rebuking him loud and clear!

Also be in BIG prayers this Tuesday! Early that morning Papa Bear (my future father in law Andrew's Daddy) is having a heart cath and following that we are all going to meet my pain management doctor for the first time and get on a schedule to having a pain free life...or so we hope!

Pray that God sens me an empathetic pain management doctor who truly cares about my needs and my familys for my relief! Also be in prayer...I was supposed to set up my bacterial overgrowth test and I didn't because I WANT A BREAK! So I need prayer and have to do that and also prayer for my treament which is THIS WEEK! So much going on right now!

I love you all and thank you for everything you do! Prayers for my sweet friends

Jamie - as she is recovering from passing her kidney stones! and David - as he is nurses his wife to help

Kelly - as she battles her Crohn's! and also her little boy as he has to watch his mother endure this terrible disease!

Amy and Kyle - as they battle her Endo and IC and as they still seek God and His will for their hopes of a baby!

Mr. Walt my bebop - still fighting and recovering from the stroke! and also Mrs. Shirley and Lee and Mr. Walts children! For strength and peace and comfort!

Love you all!

Tuesday, August 24, 2010

Prepare to Read!

So I told all of you this was coming. I'm sorry that I have to bunch so much up together, but between being in hospital, doctor visits, treatments, flush...whatever...I am pulled every which way! Ok...so the last time I told you of all the blood work they drew....here is update from that and everything else...

Wednesday August 18, 2010

Dr. Rodriguez calls. I had called prior to that and told Michelle that I still was not feeling well. Still hurting...stomach pains still bad,joint pains still bad, going to bathroom more, wanting to throw up food...yadda yadda. Well Dr. Rodriguez called later...maybe around like 4:30. So first is first. Rheumatoid and Scleroderma...EVERYTHING came back NEGATIVE! Now to most people they would say praise the Lord...not in my case! We were wanting to find something so we could treat it...something is not allowing my Crohn's to get better...or gosh we WANT to think that...I hope my case is just not this bad and to the point of almost untreatable!

Ok...so point is he calls and I get upset...so coninuing

I was like "Dr. Rodriguez...you mean to tell my my back pain, my knee pain...all of my joint pain...hip pop out...everything IS from the Crohn's?" *I had built it in my head finally that maybe it wasn't all the Crohn's* He answered back saying "I'm afraid at this point I have to say so." Well he could tell I got more upset and I told him "I just don't know anymore..." He came back and said "Well how do you think I feel Allison...I'm your doctor...I feel like I'm failing you as a doctor." I cried some and said "No Dr. Rodriguez! you are not and if anything it isn't just you I have a bunch of doctors on my case." I told him I just felt like giving up and he said "No...you have to keep hope." He then told me of two more tests that he wanted to try...

One - Lactose Intolerant Test

Two - Bacteria Overgrowth Test

Next day would be Thursday the 19th. Now this would be the day I should be getting my treatment with the double dose...that Thursday marked 6 weeks...but lovely insurance had not approved so I didn't get it...(nor have I this week)...so I guess it will be 8 STILL even though IT HAS BEEN ORDERED to 6 weeks 10 mg/kg. I also mentioned something about the treatment change on the phone to Dr. Rodriguez and he assured that he had sent the order in.

So Mrs. Rene called (Thursday) and said she was going to come see me at the store! I was hoping that she had got the order, but she didn't. So she came to the store and told me not the best news. (I love you Mrs. Rene) Well...I will try to make this short. In short words, my insurance who had complained in the first place that the treatments HAD TO BE AT HOME OR IN AN INFUSION CLINIC...are NOT paying the home health visit fee fully...so Mrs. Rene said that due to the not cooperating (which is how insurance is no matter what) I would have to come to the hospital to have my treatments. I immediately started bawling like a baby and she held me (thank you Mrs. Rene). The whole point of the treatments at home is to keep me comfortable, stress free, and just I don't know...it is better for a person physically, emotionally, mentally. So being upset, I told her I wanted to give up..and as always she told me I couldn't. I then told her I was quitting my treatments LOL! (I look back and laugh which I still say it now) and she gave me her look and said "Do you want to die"? I'm laughing typing this part but at the time I was sobbing like a 2 month old... so we talked and she held and prayed with me. Well she doesn't know the after math and I wasn't going to tell her but she will read this and whoop my butt at my treatment this coming up week :)....

After she left was another story...I had gotten SO UPSET...that my lovely disease went full force...I started dry heaving...I then calmed down. Well I walked back up front to the store where mom was and started talking about it again...about that time Andrew's dad walks through the door, Mrs. Candy, and Mrs. Joy were there and I LOST IT!!! I started bawling again and Mr. Bob came and hugged me and told me we were going to get through it. I then had worked myself up so much that I ran to the bathroom...from there I dry heaved until I ended up throwing up my guts...I thought I was ok...well Papa Bear (Mr. Bob -Andrew's Dad) didn't leave and was waiting on me to get out...he had a cold rag ready and was holding it to my face and holding my body to stop shaking.

Well it was close to closing up. Mom and I closed up...went to the house and I felt so terrible! I was nauseated to the point I didn't want to move. I was FREEZING!!!! but temperature wise was as hot as a furnace. I had to use the restroom so I scooted to there...after I looked in the mirror...I had red dots all over my face, neck, and chest...well I immediately got alarmed and showed mom. About this time the stabbing pains were becoming unnoticeable and I layed on the couch again. About 20 minutes into fighting I told mom we HAD TO GO TO THE ER! I knew I couldn't make it to Mobile so we just went to Jackson...if someone I don't like would have been in there I was ready to punch them and leave...but thank my HEAVENLY FATHER ABOVE WHO WATCHES OVER ME NO MATTER WHAT....DR. FAGBONGBE WAS THERE!!!!!!!!

All of you know that I worked very very closely with him...I cannot count how many babies we delivered together and how many patients we took care of together. He was always the one to lift me up and understand my situation. He always had the compassion and was the one who helped push for my mediport! God bless that man!

Well mom registered me and saw that he was on call...well when she came through the door she said look and I turned and it was him...I immediately start bawling again and he motioned for me to come and he just hugged me and said he would get to me. Well I have Crohn's and when it comes to triage I come last...so we waited a good while. Well we get back to the room and I was dying in pain...didn't let anyone know I was there because didn't want to stay or plan on staying so waste of time.

My nurse was absolutely precious and so sensitive to my disease. Her daughter as well suffers with an autoimmune disease and knows all the baggage carried with them. We had to access port twice because the half inch wasn't getting it this time...that made me sad because Mrs. Rene and I always brag on my port and now it is just being a handful...I will get her to fix it up though (right Mrs. Rene :)?). So I won't go into all the details of what was said or happened...Dr. Fagbongbe just told me I was going to have to start controlling my emotions. I have explained Crohn's being an INFLAMMATORY DISEASE! That means one upset and its like lighting a huge firework. Oh and the red dots...I had petechiae. That is when your capillaries literally hemmorahage due to extreme strain (like throwing up which I did and hard crying which I also did). I'm shaking typing this because it is getting so aggravated recalling all of this to memory that its just making it sick. I told him about the week and all the bad news, and the insurance crap and just told him I was trying to control my emotions but I had so much bad news prior. Well he was so sweet and helped me...

He gave me a 1000 ml banana bag (lots of vitamins in fluid), phenergan through drip, pepcid push, zofran push, and demerol push! About 20 minutes in I felt the demerol kick and my pain eased pretty well! I of course was highly sedated just because, but the pain wasn't dulled all the way!

So he came in later and asked what I wanted to do! Kelly you know how I am...I said GO HOME!!!!!! (girl you know how it is in hospitals...no fun!)I then said something about load up demerol and he just laughed and said I had already had 75....what you all don't understand is that Crohn's pain is a haunting pain...that is why you are supposed to stay and not leave...once the effect wears off...the pain is back. So I just toughed on my one dose and left and came home around 1 am. Well 3 am back up with pain and nausea. Took some pills and back to bed. Went to work the next morning because I AM INSANE! LOL!

Weekend went by...my house, Drew's house...he takes such good care of me...Sunday night he comes over to spend the night because MONDAY = 4 HOUR TEST DAY!!!!

So Andrew and I wake up yesterday morning at 5 AM!!!! My test began at 8...go to the hospital to the room and I get to drink the NASTY NASTY STUFF CALLED PURE LACTOSE SUGAR!!!!! Imagine Pedialyte mixed with Chlorine water mixed with salt water and sugar....oh gosh...nauseated just typing it. Well most of you know I couldn't eat drink after 12 prior and couldn't eat drink brush teeth no pills all that day til the 4 hours were completed. Well I was nauseated and hurting already so I was like how in the heck will I get this down.

My sweet little Andrew was sitting beside me cheering me on. I told Michelle..."I'm gonna throw it up" She didn't like that and said we would have to start ALL OVER! Well somehow I chugged that crap down and it started coming up...Andrew was cheering me and I kept gagging...finally I convinced my stomach to keep it...

So every hour we had to come back and blow in a bag to check if the hydrogen would go up...NEVER DID!!!!! I told all of you that we can trace back my crohn's disease to 3 years old. I would know if I was lactose intolerant or not by now so I knew the test would come negative.

At this time though...if you drew blood and told me I was an alien I would say Hallelujah just because we found something!!!!!! Smurf, Smiegel...I don't care...just help me with something to help the crohn's.

Well...11 go across to Dr. Rider. Spent forever in there...got upset because I had to talk to a STUPID RESIDENT! He kept asking about my butt pain and I was like "SIR...MY BUTT PAIN AND ANUS PAIN IS NOT THAT BAD...IT IS NUMB COMPARED TO MY STOMACH PAIN!!!" I don't know how many times I had to say that before he got the dumb point. Well when Rider finally came in...I was already mad talking to Mr. Russian Resident. I told Rider that I was tired of explaining my horrid disease to everyone! LOL I was on one y'all! LOL! I'm telling you...after being pushed here and there you get gutsy! :) Well Dr. Rider prescribed me my dilaudid after being there forever and a day and I blew in my bag (poor andrew had to run back to the hospital to get the bag to blow in because I was stuck at riders...he is so good to me) so we leave Rider and take the bag back to Rodriguez's office...NEGATIVE AGAIN!!!!

So when I walk in I hand the bag and was flamed up...Michelle asked what was wrong and I told her. She said that she was going to call Dr. Rod and tell him results. I started crying and asked her "What are we going to do?" and asked if there was anymore tests besides the bacterial overgrowth left...she just shrugged and said "I really don't know Allison...I think he is trying to pull straws right now with you..but at least he isn't giving up." I came back and said I am...

So she called me after we left saying Rodriguez wanted appointment for the Overgrowth test so PLEASE EVERYONE PLEASE PRAY FOR THIS ONE!!!! WE NEED A POSITIVE! CRAZY PRAYER REQUEST BUT WE NEED SOMETHING! It would definitely be feasible with the abdominal swelling and nausea...and so on.

After this I was down and just talked to Andrew. I called Jamie and vented to her as well! (thank you Jamie :) I love you). Andrew asked what would make me happy and I told him "Owl Earrings" Well we went to the mall and by goodness we found me some owl earrings and I was a happy little girl. We got a pretzel, walked around, and just spent fun couple time together! He made me laugh and got my mind off everything!

Well after that we headed to Mobile Infimary...I got to see Mr. Walt (my bebop)! He really couldn't say much but I talked to him and told him I loved him. We then went to the waiting room and stayed with Mrs. Shirley for a few hours and prayed with her.

After - movie that stressed me out LOL nail biter - and dinner...(you don't want to know this but I told Andrew I was eating the most buttered up thing so I would wipe my tummy clean of the lactose junk - well lets just say it worked :) ) Dear goodness you all...I am getting way too personal! HAH! Ok...this is fun though!

After dinner we went by Michael's and bought my future little niece some letters and the paint so I could paint her signet to match her bedding. After that we headed back to Mobile Infirmary to visit Mr. Gary! (Brianna's daddy - Momma Pickards hubby)! Andrew and I didn't have time when we went to see Mr. Walt so we just made another trip. We got to spend a good few hours with him and catch up on him. He was so sweet and even asked about me. I got teary with him...I'm just a little emotion ball right now. Andrew and I had the privilege to pray for him and then we left to give him so rest! Then my tired tired angel and my crazy emotional EXHAUSTED self headed to Jackson. I told him that I had enjoyed our day so much!

See...the day did SUCK! but after getting to pray with Mrs. Shirley and be there for her and Mr. Walt and visit Mr. Gary and fellowship and pray with him...God had already turned my day from yucky to BLESSING! God is so good! So a big thank you to everyone who contributed to the day change. I mean it still didn't change the fact of my bad news, but just getting to be with other Christians going through hard times just helps you fight harder.

When Andrew and I were praying with Mr. Gary I just let God have with it...and he gave me words to pray about Satan attacking all of us believers...and how he was bringing the tribulations and trials through illness and sickness...we rebuked Satan and his evil plans to destroy our health and lives...we told God that we knew He WAS AND IS GREATER! and has plans no matter what!

So...today - chronic fatigue...super tired after writing this, but you all deserve to know because you all are part that keeps me going whether you know it or not. Your prayers, your reading of these words to know specifics to pray, your words of encouragement, your friendships, your love, your compassion, your honesty...I could go on and on! Just know that each of you reading this are a huge part of my fight and I need you more than you know!!!!

I love you all and please please be praying that when we set up this test it will come back positive! This test will be 3 hours and with this I cannot leave so I will have to stay in the clinic at the hospital for the full 3 hours! Also...my first visit to see the pain management doctor is coming this Monday! I had a BUTTLOAD of paper work to fill out, but I am excited because I know the doctor will be able to help me with pain that is never ceasing it seems!

I know this was confusing and I'm sorry...Just so much! over so much time!

Saturday, August 14, 2010

Friday the 13th and I'm at the Doctor...WHAT!?

Friday the 13th...the day of my appointment with Dr. Rodriguez. As always the love of my life drives me to Mobile for my appointment. Now before this I knew that I would be going to have lots of blood work. Dr. Rodriguez and I had talked on the phone after my last hospital stay about possibilities of other autoimmune disease. What a lot of people don't know is that autoimmune diseases sometimes decide they want to pile together. So if you are diagnosed with one you should always be checked for others.

So we arrive at 1. They take my blood pressure and it is 128/78...which is high for me because my normal is 80/60. I was in pain and very nauseated at the arrival. In the waiting room I placed my head in Andrew's lap.


so first is first. I told you my blood pressure. Well Michelle checked my pulse and when she went to she noticed my hands were very clamy. Now get this I was super cold but my feet and hands were sweating. This happens a lot and I never knew why. After she is finished, Dr. Rodriguez walks through the door...he shook Andrew's hand and came straight to me and gave me a hug. I hugged him back because there was so much bottled up. I love Dr. Rodriguez and what he does for me, but as you all know I get frustrated with him.

He always starts with asking me what is going on. I immediately got emotional and told him see...my face had already inflamed and was red and I was like just wait my chest will break into hives...at that moment Andrew said "it already is". So I explained the never ceasing nausea and pain. How it hurts when I have a bowel movement. How it feels that someone is sticking a knife up my booty and how one morning I couldn't breathe because everytime I took a breathe I couldn't because my stomach would spasm. (so pretty much I was hurting in my stomach to breathe). He listened and seemed concerned...this time I wanted to make sure my point was heard...now for those of you that know me I am sorry for this next part. I hope you don't think any less of me but I was so upset and in so much pain it came out...

he looked at me and I started bawling and said "Dr. Rodriguez I FEEL LIKE SHIT!" I started crying harder and was like "You know how much I love Jesus and you heard me...I fell like s-h-i-t!" I could tell that he could see it was hurting for me to say it in those words and for me to be in the emotional and physical pain I was in. I then continued "I was praying and talking to God on the way up here asking Him to give me the words to tell you HOW BAD IT IS! Dr. Rodriguez I am nauseated to the point I CANNOT MOVE OR SPEAK!" I cried and tried to gain a little composure and started again "I don't know how to make you understand...I'm not like all these other Crohn's patients...I'm not just nauseated Dr. Rodriguez...I couldn't talk to my mother the other day because I knew I would throw up just from talking!"

You all it gets to the point that I have crawled to bed...not talked to people...just layed on the floor...it's like a robot who just shuts down...

So we started talking about signs and symptoms of the Crohn's and when they get worse...I told him right at 4 weeks was when everything would start getting worse

At 4 weeks my body begins rejecting and needing the Remicade...after I eat my body wants to throw up anything I have eaten so I have to spit some and then fan myself to keep the food down...every week after gets worse until I get to like the week of treatment and the throwing up begins...

So we talk about Remicade...he started serious...he said he was afraid that possibly I was building an antibody against the Remicade. I just looked shocked "I thought you said I could only build it if I quit taking it and thats why I was on it for life" He came back "I know...we all did but now there are articles saying that in some of the autoimmune cases it is showing building antibodies sometimes just against it for no reason". Well that was bad news one....

Bad news two...there is no way I can have Remicade every 4 weeks...no way you can have those infusions that often. Medically not permitted and definitely not by insurance...part good news - he is ordering for the Remicade to be 10mg/kg instead of 5mg/kg...so that will be double the dose...instead of 3 vials...I will get 6 vials. Also instead of getting treatments every 8 weeks...we are working for every 6 weeks...now only problem with this is sometimes insurance wants to step in and say no. So what he has to do is get enough evidence to fight and say SHE HAS TO HAVE IT. Dr. Rodriguez will get it and I have faith in him just because if I don't get it raised...I WILL build antibodies and yall these treatments are my LAST OPTION!!!!! WE NEED THIS!

So next is next. "I have been mad at you Dr. Rodriguez" Him- *he smiled* "I know this you told me already." I laughed and couldn't help not being mad. I then asked him what the heck was I supposed to do about my severe pain since he doesn't prescribe narcotics...I told him I was like "Dr. Rod if I didn't have Dr. Rider giving me the dilaudids...I would be dying...I said what would you do..." He then went into the same thing as Rider and was setting up talking to one of his fellow doctor friends who is a pain management doctor. He was going to send my case in and get an appointment set up with him...

So after this...this is where it gets serious. So he tells me of this new test that is out for people with Crohns...I don't even know how to spell it...but it is called the Premethius Test.... :(

Premethius Test = my prognosis (who knew crohn's patients had dang prognosis's...well I do)

So it will show what will happen to me in 20 years...the rate at which the disease will worsen...the rate at which it will attack my body...the damage it will do...when the Remicade will quit working...when and if we will have the dreaded surgery...and just well you know...

After he explained I just sighed and said "Dr. Rodriguez...why do we want to know...we know it's not good...

he wouldn't even look at me....that part hurt more than anything because he knows as I do that even putting in faith and even believing medically it's not bright...

Now for those of you reading...don't think that my faith is not strong...believe me...it is or I wouldn't be writing this 8 months later not crying but feeling stronger and more ready to fight harder. God and I have talked and He has shown me that He wants me to carry this burden and put my trust in faith in HIM so that others can see that HE IS THE ONLY WAY!!! yes it is a burden but HE CARRIED THE BURDEN OF THE CROSS!

Back to story....I forgot to talk about clamy...he brought it up and I rubbed my sweaty hand on him lol...he was like oh my...and then I was like FEEL MY FEET...he was so silly and jumped back and made an icky face! :) That is why I love him. So he felt and they were ice cold and sweaty. (clamy)...he then had me do a test...forgot the name I know bad nurse allison...I flexed my hands down and put my wrists together...he told me to tell him when I felt something...I asked what...he said anything..I was like "I know what you are doing" (but actually had forgot)

After a minute I said "ow..my wrists are burning" he nodded and told me to keep doing it...few more seconds "my fingers are numb and tingling" few more minutes....he told me to stop and flipped my hands over...fingertips were purple...Raynauds Phenomenon....

I told him hey I KNOW WHAT THAT IS! I then said you look at me...He laughed and did and I said I know what you think I have Mr. because I have medical books too...he laughed again and said what? and I said the dang lupus...he said no mam! I got very excited he didn't think I had that...(ps my chest is still in thousands of hives) so I said...be honest come on what do you think I have...

so now we are thinking along with Crohn's...Rheumatoid Arthritis and Scleroderma...both chronic autoimmune diseases as well. Now all of you know I have complained of hip, back, knee...just all the joint pain. Well joint pain is associated in bad cases of Crohn's but with mine being so widespread it makes sense. You will have to look both up but I have every sign and symptom of both. They also both run with Crohn's very easily.

So...I asked why it was so important to know...he said well you need to treat everything...if everything gets treated then it might possibly relieve one of the others and help treat them. He gave me an example:

"Allison what if we had rheumatoid diagnosed but not Crohn's...we would be treating joint pain and swelling and be missing a vital disease that would be worsening the rheumatoid and worsening the Crohn's..."

That made plenty sense...so we ran probably like 8 blood work tests...lets just say my arm was hurting from blood being drawn.

He then layed me back and palpated my intestines...I kept spasming against him and he was like quit moving...I laughed and said I can't help it...its my body...he just laughed because he knows with Crohn's your body contracts with the intestinal spasms...

He told me that along with raising the chemo and shortening the time in between doses...he was ALSO PUTTING ME BACK ON THE IMMUNOSUPPRESIVE PILL! I will have no immune system lol which is good though because that is what is killing my body.

Also...I told him about the contract I had signed to get my bachelors in nursing and told him they said I could cancel it since my medical condition was not well I just had to have a written letter and documentation of my diagnosis and prognosis...I was afraid he was going to go back and be like you weren't supposed to quit nursing and then I was going to freak...

I felt like a weight had been lifted...he was upset that I was in a contract with it...he didn't like that due to stress factors that can trigger me and he knows that nursing was out for my health so he was like "you just let me know when I need to send, where, and what all I need to say and we are GETTING YOU OUT!" I felt like he was my hero right then!!

Also...he wants to do the promethius only on me and one other girl...with our cases being not so wonderful he is doing us first as the little test piggies...he said it has been proven very accurate but it costs 600 dollars...he wants to make sure insurance is going to cover...because I mean heck with this disease everything is already expensive...

So...I wrote this without crying once and I am very proud of myself for that. I guess that means I am starting to deal with that diagnosis and all that bitter-sweet information...

So now I'm asking for prayers...to be honest we are banking and hoping that I do have the Rheumatoid and Scleroderma just because that could be a possibility nothing is getting better because there are more diseases that are all just feeding off one another.

So please pray that whatever needs to be found is...don't pray for it not be there...just pray that GOD'S WILL, WILL BE DONE!!!!! I want HIS WILL! (whatever it may be)

I love you all and apologize for the length and for the rawness and for the one bad language part but I want you all to know everything uncut and true! I love you all very much!

Please also be in prayer for my sweet friend Kelly in Georgia...she had been in the hospital with her Crohn's for over a month...I haven't been able to contact her much and be there for her as much as I would like because I myself have been a mess! Just pray for her and God's will for her life.

I LOVE YOU ALL!

Friday, July 9, 2010

Catch Up of My Life in the TERRIBLE past TWO WEEKS

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

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 :)

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!

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!