Thursday, April 22, 2010

Finally My Breakdown Post

Ok my sweet blogger friends. Most of my stuff was from the past and I wrote it to catch everything up. If you don't know how to go to my first post scroll down the page and on the right side you will see blog first post and beginning of my story is called The Start of It All. as I was saying most posts are old so I didn't have a break down while writing them because they were in the past. I have told you that I wanted everything on this blog to be from the heart and be real so that you can see my struggles, see my pain, see how great My God is, but also see that I am human!

So today my friends....or this morning...I'm breaking down to you. Let me first say I know God loves me, I know He is seeing me through, but also I am human and I deserve every now and then to get here we go:

It hurts my heart because people look at me and go "Oh well you look great". When they say this I know that they are thinking *well I thought she was sick...she looks just fine to me*. Now in no way am I referring to those of you that are close and know everything and know what I deal with on a daily basis. I'm talking about people in the public who barely know you and just want to have something to talk about. Yes...I may look fine...but you don't know that my joints feel like they are about to burst...that I had just ran to the bathroom and had a painful bowel movement...that my chest feels like there is a knife through it from my treatments...that I have trouble sleeping every night from the pain...that I can't hardly breathe half the time from the heaviness on my chest which is still a side effect from the treatment. Point being....they do not have a clue.

I am on the verge of bawling as I write this. This is why I stand so strong for myself, my God, and for the others that suffer. People need to know. They have become oblivious to other things out there and don't try to learn and find out. I myself was that way. I even went through nursing school and when I read of Crohn's I was like *hmph* No biggy to me! I look back and go how dare you Allison...if you only would have known that your life would be changed just 2 months later!

Now for the other things on my heart. I know God called me into nursing. I have a passion for it...and I know that I'm good at it. I always have such a blessing with each of my patients and somehow the conversation always end up about my God and how wonderful He is.

Now for the part that kills me. My body cannot do it...right now I know it can't. As much joints would kill me. They kill me now and I barely move around. It just puts so much pressure to me, because never have I had to have people wait on me. Never have I had to have people provide for me. I have always been the nurturer and the one to take care of others and I feel like a bum. It also makes it harder because you know people don't understand. I still have my position at Grove Hill...but I'm sure some of the nurses talk about me. I know they have to be tired of waiting on me. My director of nursing is Karen Coleman and she has been a saint through this all. I know she is expecting me to come back though. I know I have my third treatment May 27 and I know I will be back to square one AGAIN! Dr. Rodriguez said we needed to wait to the 3rd treatment...after this there would be a bunch of blood work and evaluation questions...the 3rd treatment is when it would just BEGIN to show that it was helping if it's going to. As I said before there are 3 options...1-remission 2-outbreaks 3-no effect. I don't know why I'm putting so much pressure on myself because I'm not supposed to be feeling well even if the treatments are going to work. It takes time to build up in the system.

With that being said...I have signed up online and I am working on my Bachelors in Nursing. I know that I am going to have my Bachelors to have a higher up position that doesn't consist of me walking 24/7 and lifting and pulling and killing my body. I am eventually going to work on my Masters too. But as of now...I CANNOT DO THE if I went back...I would fall to the floor dead. No lie! My body would get taxed and give out with the treatment inside of me and the cream that I'm using to treat the dern fissure that we possibly might have to have that surgery on.

AHHH!! I am probably making no sense. I'm scared because I think about my future. I know all the doctors have told me I'm one of or the worst case they have seen. I know why do I put so much pressure on myself. I don't want to be the wife that is a burden to my husband! I know Andrew would provide for me and he wouldn't mind it, but to me...that kills me! It's not pride I's just it's a completely different life for me. As I said I have always worked...I have always provided as much as I possibly could for myself because I wanted to. Life change...HUGE! I don't know what to do...I'm praying to God desperately about it! The crazy thing is I don't feel Him pushing me to go back.

I ask Him "Lord...I know it was your will for nursing...I know you bless me and gave me the knowledge...I know you allowed me to use you in my work setting and heal others through this has happened Lord and I don't know how I am supposed to do it.." *He doesn't answer...He is waiting...I don't know if he wants me to humble and realize that he had nursing for my knowledge so I would understand everything that is going on...I don't know that maybe I might can be on a board for Crohn's because of my nursing like the CCFA board that I'm doing this walk for...I'm trying to figure it all out and I think He is wanting me to pray and seek Him deep deep because I'm not receiving an answer.

I feel like that was a part of my life and now He is wanting me to move on. I was able to use my nursing when I was in the hospital all those times...I saved my life about a billion because I caught nurses about to push the wrong thing or do the wrong thing and I would save the day and my life. Maybe He is wanting me to move on and realize that this is my life prosper from this disease and tell others more about Him and what He is doing in my life!

I know my heart is heavy from the treatments and that is why I'm having chest pain, headaches, trouble breathings...but spiritually and physically my heart is heavy! I feel like I am letting so many people down! I feel like a failure in life right now!

I know I'm not and I know later on today I will go Oh my goodness Allison what were you saying...but right now I told you I would be completely honest and this is how I feel! I am hurting so bad not only physically but emotionally.

I want my life to be His will and I want to please Him. I know I will let people down BUT I DON'T WANT TO LET MY FATHER DOWN! I want Him to be proud of me...and it scares me so bad that I might possibly not be in His will at any point in my life!

So there is my heart...out on the table! I love you all and thank you for what you mean to me! I love you all!

My Nursing Grad Picture

The Love of My Life

Me with My Mom and Dad

Best Friend since 9! Adriana

Monday, April 19, 2010

Oh Tummy Why Do You Persist To Keep Me From Sleeping

My sweet friends it is 4 am in the morning. I cannot sleep. My tummy went from stabbing pains, to nauseous, to now just feeling like something is inside of it rolling around. These feelings are sometimes so hard to explain! It feels terrible! I started getting a headache. Sweet Andrew is staying over tonight. He set me up on the recliner so my chest wouldn't hurt from sleeping in the bed. He is playing his video game. He is used to staying up, but I believe he is staying up because he is worried about me. I feel so bad because I lose my temper with him so easily. It's not that I mean's just so hard at times for me and it's so hard for others to understand everything that I'm feeling physically. It's also so hard for me to convey to those I love how much I need them right now.

These treatments are so hard on my body physically. We have been wiping everything down with Clorox today because Addison came home with a cold today. As you all know my immune system is gone with these treatments. As I have said before so so similar to chemo only difference is I don't lose my hair. My hair has however thinned and has thin thin patches from the Crohn's itself.

Pulling my strength and happiness 1-from my Lord and Savior! Nothing describes it better than a song I used to lead at worship when I was the singer of the youth praise band. The song was entitled "Jesus Lover of My Soul" goes to follow with "...Jesus I will never let You go...You've taken me from the miry clay...set my feet upon the rock and now I know. I love you...I need you...though my world will fall I'll never let You go. My Savior, My Precious Friend, I will follow you until the very end." It repeats itself over and over again. 2-from my family 3-from my sweetheart 4-from you my sweet dear friends and 5-this Take Steps event!

Although Crohn's is no fun I have gained a passion for it! I guess that is with anybody. When you go through something in life that is a hardship you learn to trust in Christ more. You gain strength and determination to battle the obstacle...and with each day you fight you gain a passion for the cause. I'm finished. I did however finally get to take a picture of what my tummy should and does look like before it blows up. How funny is this...I took this picture...walked into the den and as soon as I sat down it started hurting and started swelling. This is just a picture to show you the difference. It's so funny because I can't wear shirts that are snug because they will be fine and 5 seconds later I have a belly popping out!

Don't look if you don't want to see my belly...I however think it's fascinating and I told you...this is Allison's story and she wants you to know everything...the truth about this disease....

This is what my abdomen should look like and is
before the Crohn's does its attack job...
no bathing suits for me anymore...because...
tada....look down

I posted these the other day, but
I didn't have a picture to compare to...
Now I finally was able to get one
Something to key in know with Crohn's
it's a lot of can actually
see the veins bulged in the abdomen...they call
this adjective "vascular"

Another abdomen's unreal
My mom had to help rub out some bad
parts in my tummy today to try to help me
and she couldn't believe that my stomach
was actually spasming against her as she rubbed
I mean it when it says it has a mind of it's own

Sunday, April 18, 2010

I am ONE Voice, but TOGETHER we WILL be heard!

As you all know God has been burdening my heart not only for Him, but for the plans He has for me and this disease. Also you all know that I keep saying that He wants me to tell my story...that He wants to use me...and I truly feel it will be is a strong way! It excites me! Well...I had been doing research and I was wanting in a few years to get up some big rally thing for Crohn's like Relay for Life is for cancer. I feel that others do not understand my disease and do not know what I suffer on a daily basis. With that being said I have EXCITING news:

I researched and found out that indeed the US has an organization for my disease. It is the Crohn's and Colitis Foundation of America! I even went to the extent to find that there is a get together to support this disease and condition! When I saw that the state of Alabama was hosting the walk in Birmingham I immediately started crying. I found that I could make a team and that we together could walk for all of us that are struggling! Just not the diagnosed people our suffering! Our families and friends suffer to. It is hard to see someone you love go through these things. You want to help and when something like this is created it will not only help the victim of the disease/condition, but it will also help the family and friends. Together they are being one in a mission to help and find the cure!

Now enough babbling! We have come up with our team name...."Purple Hearts"...purple is the color of Crohn's and we also wanted something that was passionate, that could be Christ oriented...well hearts show love and desire and God is LOVE! My mother Jamee and my father Phil came up with it...well we all kind of figured it out together. Now...for Jamie...I told her that our second name or our co-name would be "Rally for Alli" was too cute, but we are a team and "rally for alli" is just about we together are the "Purple Hearts" in gathering to support the "Rally for Alli"! Whoop!!! now your part!

Your part is to help us spread the word. Tell everyone...take them to my facebook page so they can donate...take them to here (my blog) so they can donate! These donations go directly to research and funding to find the cure for in my behalf...CROHN'S!!!

Click here to go to the home page of "Take Steps, Be Heard for Crohn's and Colitis" below is the link I need you to click yo help me!!! Also, below that is a little about what my team will be doing...this is from the CCFA's personal page for myself.

Help me reach my goal

This summer, I will be walking in the Take Steps for Crohn's & Colitis Walk. Take Steps is CCFA's national evening walk and celebration and the nation's largest event dedicated to finding cures for digestive diseases. It is a casual 2-3 mile stroll to raise money for crucial research, bringing us closer to a future free from Crohn's disease and ulcerative colitis. Over 1.4 million American adults and children are affected by these digestive diseases. While many suffer in silence, Take Steps brings together this community in a fun and energetic atmosphere, encouraging them to make noise and be heard.

Your donation will help support local patient programs, as well as important research projects. This cause is very important to me and I appreciate your help as we fight for a cure! In addition to donating, you can join me at the event. There will be food, music and kid's activities. The more money we raise, the closer we will be to making life more manageable for patients who live with these diseases every day.

Please join me or donate to my efforts to support CCFA in finding a cure!

With clicking that link you can make a donation easily. All you have to do is support Allison and it will take you through a security safe payment page!

This is not only going to help me, but will help the other 1.4 million that suffer and also along with our families and friends that suffer for us!

We have these uhhh...umm...bushes...forgot the names and my parents were freaking out when they woke up this morning because they had gone from the pink to the purple...they were like alli you have to take a picture for everyone. I was like uhh...I feel like poo I look like poo...nada! They were still excited so mom helped me get dressed and told me what to wear and she escorted down to the back yard to the big ole bush! Note: These pictures are for you my team-mates and for you my friends...because Crohn's color is purple...and mommy and daddy said I needed to do this for you all! haha! I didn't last long outside, as you know Remicade is very similar to chemo and my immune system is shot. I started having all sorts of itching, breathing what not, so I was like mom last picture and ran inside and washed off my face and rested! Twas a fun short little photo-shoot! Thanks mommy!

This if for you Purple Hearts!!
Get ready - June 5, 2010

This is again for you from Andrew and I!
Love yall!

Shot 1

Shot 2

Mom coordinated this one...she said she uh...
wanted me some strange word in the flowers...
I think engulfed...ok so I'm engulfed! haha

My 2nd Engulfed picture lol!

Friday, April 16, 2010

My Second Treatment

April 15, 2010

Well yesterday was my second infusion treatment of Remicade. It felt like my first treatment because everything was much different. As I have been telling you all Dr. Rodriguez had set it up for Home Health to come out. He felt that it was too much on me to drive the long way to Mobile back and forth to receive this powerful drug. He wanted me to be able to be as relaxed and comfortable.

The treatment was supposed to be that morning, but the company who was supplying the pump and my Remicade became overwhelmed that morning. Mrs. Rene called and asked if 2:00 pm would be fine? I was fine with that because 1- I had no sleep the night before. This week has been terrible for me physically. My body has been doing everything wrong that it possibly can. Crohns was winning physically this week...not mentally or emotionally...but 100% physically. 2- I wanted Mrs. Rene to do my treatment so if I had to wait later in the day that was absolutely fine.

Well Mrs. Rene got here about 1:45. We had time to hug and chat a little. Andrew finally got to meet her personally. He has heard so much about her from me. Well we decided to go ahead and fill out some papers while we were waiting for Mrs. Julie to bring the rest of the supplies. Mrs. Julie arrives around 2:45...I fill out more papers and she shows me the pump. I'm a nurse I know all about pumps, IVs...all of that! This pump was so NEATO! I will tell you all about it. 1- It was tiny compared to the ones we have at the hospital! 2-It was portable so if I needed to go to the bathroom or anything like that I could take it with me 3-It had a little fanny pack bag that it fit in so that if I needed to walk around it could go in there and tie around my waist. 3-It had a specifically set flow rate so if the pump shut off it would automatically set back to that rate when it cut back on. I forgot to take a picture of the pump, but I did take a picture of the bag. I promise next time to take a picture of the pump because it is so cute.

Well I stayed in the recliner, because that is how most infusions are taking. It does not feel good to lay down completely because it puts a lot of pressure and fluid on the chest and it doesn't feel good to sit up perfectly straight. Recliner = perfect. So Mrs. Rene accessed my port! She did a great job! :) She then flushed it and connected my Remicade. Mrs. Julie showed me how to set the pump and they left. Mrs. Rene started the Remicade. As soon as she hit the button I felt light headed. I'm telling you...this stuff is strong. After the light-headedness I could smell and taste it. It's amazing how fast you can feel it running through your body. So it took my body a little while to calm down from the rush of everything. I told Mrs. Rene about what you feel with the Remicade and how it goes from one side effect to another. Well I started to feel my throat close up a little so I knew I needed to take another Benadryl. You are supposed to time that Benadryl and pain medicine (mine being Darvocet) 30 minutes EXACT before your treatment. Well since Mrs. Julie was running a little late it wasn't EXACT. Andrew gave me my Benadryl and I felt it stop swelling and stay at the size it was in about 5 minutes.

Mrs. Rene and I just had sweet fellowship together. We talked about everything, but everything always led to the most amazing person in our lives...CHRIST! Like I said...we had such a sweet time of fellowship. How precious is that. She is working...I am having a treatment, but we could just have such a sweet time together! As I told you in my previous post Mrs. Rene and I have always had such a special friendship...yes 20 years age difference, but we are so much alike it isn't even funny. That shows you how awesome God is at His job. He brings people together that need one another so that His strength can come in the form of that friendship. I cried, she cried...but it was tears of thanking Him for literally EVERYTHING!

About after 30 minutes into the treatment I could feel the exhaustion hitting, but it was so nice to have Mrs. Rene talk to me because it helped me to keep my strength.
After 2 1/2 hours the treatment finished! We were both excited for me, but at the same time I was sad because I didn't want our little "church service" to end. There was a little bit of the Remicade left so we programmed it to run in. After that Mrs. Rene flushed my port with 2 10cc syringes. She is such a great nurse and she knew was so precise in everything. Instead of just doing a slow flush she pushed it hard. Reason being it starts a swirl of the fluid through the port which makes all the Remicade that is left in the port flush through. I started laughing because it took my breathe and made me dizzy again. It really makes you fee like you are going to pass out. I told her what it did and she laughed to. I have never been high in my life...never tried a drug, but if I had to guess what "high" feels like, it would be! I wouldn't like it very much! After the flush, she also flushed my port with Heparin. As I explained before that is to keep the blood thin so that it does not clot in my port. That is something you never ever want to happen. Can lead to lots of problems.

When she removed the port I could not believe it. Compared to them removing it in Mobile it was a major difference. I remember explaining to you all that it was like them playing tug of war with my chest and it made me want to pass out. Well I mean it still makes you feel the pass out, but it did not hurt, and the pressure was not even compared. I couldn't believe the comparison. I was like Mrs. did so good! Well to me it was wonderful! That was only my second time and her way felt so much better than the way they removed it in Mobile. She said that she just stabilized it well. Then she said it wasn't me it was God. We both smiled! We had talked about that during my treatment...about how God had called both of us into nursing and that everything we did good it wasn't because of us, but because of HIM! It bled some and we just held a gauze up to it.

We gave our hugs and goodbyes and Andrew took our picture! We hugged again...her hugs are the BEST! We told each other we loved each other and I just thanked her over again! Andrew let her out and she headed home. I looked down and I have a pretty tub for my home now is my treatment tub! It has all sorts of stuff that involves my port in it. Well Andrew tucked me in on the couch and I knocked out. I woke up and had a little trouble breathing so I sat up. As I said before the Remicade puts a lot of pressure and fluid in your upper body. I would have freaked out but it is just part of the side effects. I took another Benadryl for the swelling, itching...and everything else. I also took another Darvocet for the pain I was starting to feel through my body.

Knocked out again. I slept in the recliner because I knew it wouldn't be a good idea to sleep in the bed. I was so thankful because I actually got to sleep in til about 10 this morning. I didn't go to bed til almost 2, but still that is good sleep compared to what I have had lately!

Overall...I'd like to thank God for in spite of everything He is still blessing me beyond what I deserve. I would like to thank Mrs. Rene for allowing God to use her and for wanting to be my nurse. She had actually told the lady that was going to do my treatment that I was her baby and she was going to do it...that meant more to me than she will ever know. Thank you to Andrew...bless his heart...he didn't want to leave our side! He takes such good care of me and doesn't even complain about it. My mom and dad for checking in on me while they were at work, and helping me when they came home. Next to my sweet Amy. We talked that morning and it blessed my heart. She is a true best friend and our friendship foundation is based on our first love, Christ. During my treatment she texted me to make sure everything was going ok, and later that night was still checking on me. How sweet that everything she is going through she is checking up on me. I love all of you and wouldn't know what to do without each of you in my life.

Pictures below - night before treatment, day of treatment, and today (day after treatment) :)

Day of treatment! This was like 4:00 am!'
I did not sleep at all because my Crohns was
not allowing that to happen. My stomach was swollen
up again, and ever got bigger later.

Mrs. Rene and Me after my treatment!

This is the little fanny pack thing
that I can carry pump around in. I didn't
carry it anywhere, because you just don't
feel like it.

Today. Day after treatment with my angel!

us again

Wednesday, April 14, 2010

Boom Boom Pow

So I know you have been keeping up with me the last few days! No sympathy needed just telling truth, I have felt terrible every single day this week. I posted the picture of the other night of my stomach swelling. Evidently my Crohns is just mad or aggravated or something. I truly think it is the Crohns trying to adapt or get used to the Remicade. Like I have told you before Remicade is a very complex drug. It is very similar to chemo...only difference being my hair won't fall out. Actually I have even read where cancer patients take Remicade. My tum-tum has continued swelling everyday leaving me miserable. Tonight when I went to go talk to my mom I was showing her my stomach. Well when I lifted my shirt it was bulged on the right side and indented on the left. Well when she looked it was crazy, but it swapped and did like a roll then it was bulged on the left side and indented on the right side.

I have also continued to get nauseated along with the pain and cramping in my stomach...the cramps/pains are unbearable. I even do this thing now to where it's as though I have no control of my body. My intestines will start cramping and it causes my body to contract and I actually have body spasms. We were laying on the couch today and I asked Andrew just to rub his hand lightly over my tummy. I was trying to find anything to make it feel better. Well I just immediately started having spasms and jerking and flinching. Andrew used to just look at me, but he has even gotten used to them.

I have my second treatment tomorrow. I'm trying to prepare myself mentally for it because I know it's going to be another recovery all over again. That's ok though...I know I have to get my body to accumulate to this drug and if it takes time I have plenty of that. To be honest's really just not that much fun. Well some of you already know, but from now on Home Health will be coming to my home to give me my infusion treatments. Dr. Rodriguez and Amity contacted Jackson Home Health and a company somewhere around Mobile that would supply the Remicade.

Now for my time of praise to my one and only Jesus! First off Remicade is expensive. I cried when I found out I had to get on Remicade just because of the cost. Each treatment not including the supplies is $2,500 dollars. Now that is $2,500 every two months. Well our insurance deductible is almost reached because of surgeries and doctor visits all this year. Well I get a phone call today from the Remicade company. Before this mom and I had figured that maybe we would be paying about $400 out of our pocket every two months for the Remicade...that was just a guesstimate. Well on the phone the lady said that she had talked to the insurance and they were going to pay everything except 15%. Well we knew that and that's what we had figured. After she said that she followed with...well you all only have $500 left and your deductible is fully reached...pause...after that insurance is going to cover 100 PERCENT! THAT MEANS INSURANCE WILL PAY FOR EVERYTHING! Do you realize how many people have to pay for Remicade. Well one it scared me because it let me know my condition was very serious...but I didn't care. GOD HAD BLESSED ME....AGAIN! He always blesses me...He never stops blessing me!

I couldn't believe it when she told me...I had to repeat it like six times...she must have thought I was literally dumb...because it was repeated SIX TIMES! again...JESUS BLESSES ME AGAIN IN THE SAME DAY! I call Home Health. I talk to the lady in the office and told her that the Theresa lady who was supposed to be coming to do my infusion Friday had not got in touch with me. Now I don't know a Theresa. I do however know a Mrs. Rene. I remember telling my mom "I wish Mrs. Rene could give me my treatment." Well I had already been told that Theresa would be. Well on the phone the lady said that Mrs. Rene would be calling me about the treatment. I remember being a little dumbfounded like "WhaHUH?"

Well Mrs. Rene contacted me later and she told me that she had talked to Amity. Mrs. Rene was wanting to give me my infusions and she was taking off Friday. Amity had told her that it would be ok to do the infusion either Thursday, Friday, or Saturday. Mrs. Rene told me that she could Thursday. I was so excited...GOD BLESSED ME AGAIN! I told her that I had been hoping that all along. Mrs. Rene is a woman of God. She had helped on the surgery when I was 18...(I'm going to tell that in the special question answer post I'm preparing for you all). Other than that Mrs. Rene and I have always had such a special bond and such a sweet friendship founded on Christ. So to have someone that loves first God and second me...why wouldn't I want her to give me my treatment! All I have to say is I may feel terrible, but I am so happy. I am so happy that even through the storm My God Loves me SO MUCH to Bless Me in NUMEROUS WAYS!

Now for my update of pictures...this is very ugly of my tummy but as I said...I'm telling my story and I shall hold nothing I want you to look at my face my arms...I'm not a big girl...that tummy is not in proportion LOL at all!!!

Gotta love the indent the POOCH!

My oh well face :)

Haha...I told Andrew to take this picture because
I wanted to make the monster face because I felt like
I had a monster in my belly! haha! He was like huh?!

Me and My Sweetie who doesn't know to look!

Andrew made his heart around my port...haha!
We thought it was funny!

Tuesday, April 13, 2010

I weigh 115 and I look Pregnant...Thanks Crohns!

April 12, 2010

Day started ok. Didn't feel the greatest, but didn't feel the worst. Brianna had said that she was going to come over so I was excited about that. Andrew was already over. We just relaxed. I didn't have the energy to do anything really, so I just scrunched my hair and let it go its natural which is curly...then I threw it up in a ribbon! :)

Well later that day Brianna came over. Mom was tired from work so we decided we would fix supper for her. We had decided on what I call Barbie Teacups :)! Mrs. Krista used to make them for Candace and I all the time when we were little. So Brianna, Andrew, and I went to the kitchen to let mom relax. Just so you know which you already do because I say it all the time, but I had the most amazing best friends and most amazing man.

They were helping me cook since they know my strength is not the greatest right now. Well Bri and I started browning the meat and Andrew decided to take a photoshoot...haha! I told him to take some pictures not a pictures that can be put together to make a literal movie...haha! Well we got everything finished and put some fries on and had supper together. It was yummo. After that Brianna and I talked for a good while. We always talk about things in we feel about them...what we feel like God is leading us today. It's so nice to have Christian friends that you can always take everything back to Christ and His plans and His desires for your life. Our wants and our needs need to be in line with His.

So after Brianna left Andrew and I just rested on the couch. I told him I wasn't feeling that great. My joints started aching...especially my spine and shoulders. He tried to help rub it out, but it didn't work. When he started to leave I still was feeling terrible and my stomach was starting to swell really bad. I started feeling nauseous and to the point of just laying down and giving out. I finally went to bed.

Now this is all in the same day...wish I would have had a picture of my stomach from earlier that day...but I do have the pictures with Bri and you can see that I'm not swollen almost just skinny looking...and them boom...STOMACH HUGE!

Not Ready! haha!

Still not ready! hah!

Well Ready, but I'm silly!

She was making me laugh! :)

Cooking! Cooking! MMMM!

Now are you I cropped a picture so you could see what I went from to what I went to...


After! This is a little blurry you can even
see the veins bulge slightly!

Another shot...this is what my tummy does.
It's really not fun, and doesn't feel good
at all! Little peak now into my world.


April 8, 2010

Ok. So time for a refresh. Everybody remembers Dr. Rider. He is my per-rectal doctor and he is also my surgeon when it comes to those issues. Well ever since December I have told you good and bad days. Well one thing that I have continuously had problems with is still my anus.

I knew the fistula was healed. I knew that the knot was gone, but every time I have a bowel movement it still hurt -feels like razor blades- and I bleed with my bowel movements. After my bowel movements I'm in terrible pain so I will have to take some Darvocets or sit in a hot bath. Well finally when I went for that Remicade treatment I had asked Dr. Rodriguez to look at it, but I was exhausted and we all forgot to remind him.

Well I thought about it and I knew that the best and smartest thing to do would be to make an appointment with Dr. Rider since he specializes in that specific area. Well we made the appointment and on the 8th Mom, Andrew, and I went to see him. Well when he walked through the door you could tell he was like Oh no. Now let me back track for a second. Back in December I had begged Dr. Rider to be my doctor for my Crohns...well he got a shocked looked then laughed and said "he** no". Now don't think he is was actually really funny. Also in December he had told me that on a scale from 0-10 I was a 3 on the scale as far as treatability. So he was saying I could be pretty much treated pretty now back to the day...when he walked in he gave me the face and I said well on a scale of 0-10 I'm a 10...and I laughed. He sat in his chair and just did his little face and said "Well...I'm sorry...I got to give it to have a really bad case". So I told him everything that was going...caught him up about the first Remicade. He was happy to know I was finally on the Remicade. So next...he needed to examine.

Well let me just tell y'all. I'm now finally comfortable with laying on a table and getting examined, but that is now. It is very demeaning when you have to lay up on a table and people have to look at and up your booty. It's just an embarrassing situation. However, Dr. Rider has such a nice bed side manner and is so respectful. Well he spreads my cheeks and he said "Huh?" Well I'm turned the other way and I said "Uh Oh...what?!" He was like well..."It's are saying you are having problems, but your external fissures are completely gone...and also where your fistula was, the skin looks so healthy." This brought more concerns. I asked him "Well why am I hurting and bleeding" (I had just had a bowel movement before he came and I had bled and hurt with it) He told the nurse to grab a pediatric scope.

"Well...that's what we are about to find out." He got the scope and I started getting nervous. I have never had a scope stuck up me while I was awake...only during the surgeries while I was completely out...before the fissures you could see with your eyes by spreading my cheeks apart. Well he put the gel on it and inserted it...I'm talking about PAIN! I started breathing hard and humming with my breath trying to ease the pain. I finally felt something warm and I knew he had it up there and the light was on. He examined and finally said "huh"...again I'm like "What?" He said " do have a fissure...but like I suspected it's internal." He pulled the scope out and told me to get dressed and he would be back to talk to me.

So we go back to another room. He walked in. He told me that 1-good news because the external fissures were gone which meant something had worked at one time or another 2-now that I had an internal fissure we were going to have to deal with it. He told me there was 2 nonsurgical ways and 2 surgical ways. With my case of Crohns there would be only 1 nonsurgical and 2 surgical. So only one way to try to treat it first. It was the Cardizem cream. It is a blood pressure pill that is crushed and made into a cream. Problem with me is that my blood pressure runs low and I can only use a thin coat and sometimes it gives me that blood pressure bottom which makes me feel terrible. I have to apply 4 times a day.

Next...he told me that he would see me in 3 weeks. If it wasn't cleared by then then we would set up for surgery. The first surgical try would be putting a scope in and give botox shots around the fissure and in it... this would then relax the area and muscles around, which would hopefully help give it time to heal. We didn't discuss the second surgical procedure if that didn't work.

He then asked about pain medicine. He showed me that my fissure was about 2 inches long. He said its not terribly long, but long enough to cause terrible pain, so he refilled my darvocet and gave another refill. He also talked to me to try to encourage me. He talked to me about my Remicade and I told him I was just trying to stay level headed about everything. He asked me what I meant. I told him I didn't want to be super excited because I had with everything and they didn't work. Second, I didn't want to think they weren't going to work because I wanted them and thought they really might. He said he understood because none of the treatments before had worked.

He also had told me that he had wanted me on the Remicade in the beginning and that people were going to have to get over the fear of giving it to young people with the risk of lymphoma. He said that they haven't had one yet, but it eventually would happen. He said if I was the one...that I was the was inevitable, but to hold back the treatment because of the risk was depriving someone of treatment that may put them in remission.

I understood where he was coming from, but it's not like I waited that long...I got diagnosed in December and ended up getting Remicade in April because nothing worked. 4 big deal. Now for someone else that waited years...I might can see that.

So we left and stopped by waffle house got us some food!

Now before you continue to scroll down I told you to be aware. That this was my story and I was going to tell and show I got a picture from Adams...which is a medical website. It just an image created on computer to show what a fissure is. It is much worse in reality.

This is a picture of both internal and external.
With external you can see them on the outside, but they also
run into the inside of your anus. With the internal you can't
see as easily in this picture but it looks just like the external
just further up and harder to treat. Just as painful. With Crohns
fissures are located in places opposite from normal people with fissures.
If you have excruciating pain and bleeding with bowel movements
you may have a fissure. You can get them from many things including
constipation however I just get them and in harder places to treat.

This is a picture of ulcers which line and are all
in my intestines and also a picture of a fistula. Fistulas
can tunnel any which way they desire and can't get as large
as they want if untreated. Mine was very long and tunneled from
my rectum all the way out into my cheek and up towards my female parts.

Another picture of a fissure and fistula. Now
a fistula is a fissure that has gone untreated (possibly
not known about) and gets infected and starts infecting more
and tunneling. Now in this picture that fissure is very short...
like I said mine is about two inches and up further into my rectum.
So every time bowel passes it just rubs it and it hurts terribly

Sweet Day!

April 7 - My Mommy's Birthday! Jamee Kelly turned 62 years old...I say that proudly
because she #1 is absolutely beautiful and amazing and #2 does not look
her age!

So that morning Becky and Janice were going to surprise her. Becky had her come into that work that morning. Well Becky's sister Tammy came and turned the house upside down cleaning and did an amazing job. So she left and I kept it picked up till mom would see it later on. At lunch Janice came by and made something and put it in the crock-pot so it would be ready for supper. She just told me to watch it and stir and all that good stuff.

Well before mom got home I had pulled the chicken off the bone in the crockpot...had it stirred and ready. Heated the green beans up...and put the rolls that they had also got in the oven. Also! I had been working on a cake! I decided to do my first four layer cake! :) I made two strawberry layers and two vanilla layers. Andrew had come and brought me the vanilla frosting and we were excited. We had already given her her birthday present gift early. Andrew and I had bought her a pressure washer. She has been wanting one forever.

So when she got home she was all excited she new the house was clean and I took her through each room. I then showed her the food they had done and told her about the entire sneak behind. At that time Andrew and I had the cake in the refrigerator hidden! Well of course she had to call Becky and Janice because she was all excited. After that we had the dinner and it was excellent! Well dad when to play his music and mom ran to check her facebook. So andrew and I get the cake.

Daddy and all of us sang to her and she blew out her candles. We were so excited to eat it and thats when the fun began! :) We had a great day with her and I'm so blessed God gave her another year! :)


The cake that I made for mom!

Mom blowing out her candles!

This is Mr. Miyagi! He is our sweet puppy!
He was sad because it was not his birthday but
he got some cake! :)

Me and Mommy with her cake!

Andrew and Mommy! He is her little boy :)

Sunday, April 11, 2010

My Journey Continues

April 2010

My port was put in on the 30th of March. My first infusion of Remicade would begin the 2nd! Mom, Dad, Andrew, and I made our ever so common journey to Mobile early that morning. The treatment was supposed to begin at 9:00 am. We knew we would have paper work and all of that stuff so we got there a little early.

We get to the hospital and we run into problems. They had booked me in the lab...we knew that part. The part we didn't know was that insurance would not cover the Remicade treatment at all if I had it done in the lab or in the hospital. The only way they would cover the treatment was if it was in Dr. Rodriguez's office or done at my house by Home Health. Well this caused problems. They had told us there was no way to do it in the office that morning because two other infusions were going. So we were at a stand still. Well about this time it was like 11...I had been back and forth to the bathroom. I was impacted due to everything in the past month and I was bleeding with my bowel movements. It was so painful. It feels like razor blades are cutting you as you use the bathroom. Well I was back and forth to the bathroom the entire time while my parents were back and forth trying to get something fixed.

Meanwhile mom comes back. She had talked to the infusion nurse and she had said that after lunch to come back and something would hopefully be worked out! So we went to lunch. We came back and went to the office. Dr. Rodriguez had talked to the nurses and felt bad. The infusion nurse was going to give me my treatment. They had worked it out to accommodate me. So I finally began my infusion at 2:00 pm. The OR nurses came up to access my port because the infusion nurse hadn't had a Crohns patient with one and hadn't had a patient with a port in a while. The nurse accessed my port and I was pretty upset because I wanted somebody in there with me my first time because I was scared. They told me that they could come in once they accessed it. It didn't hurt. I was so surprised.

So she Dad, Mom, and Andrew came in the room and the nurse started my test dose of Remicade. After 30 minutes she reassessed me. I handled it fine. So she began the true treatment. With my size I took three vials of Remicade. Every 30 minutes she would come in and ask me how I felt. Every time that I would say fine she would up the flow rate. I started off with 60 ml/hr and ended up at 150 ml/hr. She said that was really good. She said that other patients would state that it felt like an elephant was on their chest. We figured maybe it was because I had a port and the other patients didn't. With the port having such a large vein/artery maybe it would disperse faster than just settling through a tiny narrow path.

30 minutes in - I started feeling really tired
1 hours in - I started feeling exhausted
2 hours in - I started swelling some and still exhausted
3 hours in - I still was swelled still exhausted but ready for it to be over I could
start to feel the joints stiffening but just mostly the exhaustion
3 1/2 hours in - OVER!!!! YAY!

Now when the treatment was over...they disconnected the fluids. She flushed my port with saline and then followed with 10000 units of heparin. This helps the blood to flow and prevent blood clots. Now for the worst part. Ok...remember I said the needle going in it didn't hurt. Well it hurt like heck coming was so much pressure. Like I had told you earlier it is a non-coring when it comes out it seals as it comes was ahhhh!!!

We went home after that and everybody just rested from this exhausting/crazy day!!

When I say the day I am counting the day of the surgery since I posted it as day one.

Day 2 after surgery!

Up close and personal

Day 2 after my angel helped me change the dressing

3rd day after surgery

1st Treatment! 4th day after surgery
This is my Ahh Eww Face! :)

I found it amusing to make crazy faces!
Especially at the funky thing in my port!
I felt like an alien connected up to all this junk!

Ok...this is my sweet ready face!
I'm ready...bring it on!

1 hour in!

2 hour in! Look how dark my eyelids got!
It looked like I had been punched or eyeshadow...haha!

3 1/2 hours! OVER!

Sweet Amity my treatment nurse!
Look how big my cheeks and arms are...
you know what I mean compared to normal.
This Remicade stuff is harsh!

Same day as infusion. Later that night.
I told him I was an evil troll so we took
a mean face picture :)!

5th day after surgery

Easter 6th day after surgery

Up close

Hope and Nathan had come down for Easter.
Since I was still stuck at home from treatment,
they came to see me and we had our Easter goody swap!