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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!



Friday, May 14, 2010

I thought Fridays were Happy Days

So...I didn't get to bed til 5 am...woke up at 9 am...only 4 hours of sleep. I finally just left a message of one of my primary care doctors to try to get something. Dr. Rider had given me ambien but it isn't doing to well and he said he really didn't know many more, because he doesn't deal with a lot of that. He had told me to contact my primary, but it has just been so crazy.

Very moment right now my head feels like someone smashed it against a brick wall. My stomach is just rumbling and I'm getting aggravated. My eyes are still really black...that will go away with time. Oh yes...disappointment this morning. I use to be the President of our Student Campus Ministries in College. Well our teacher that was our representative's daughter has come down with leukemia and it is to the point of no return almost. They had a bone marrow drive today to check for matches...my dad and mom were going and I was like I bet I can't...then I started thinking about it and I was like dang...who wouldn't want my immune system...leukemia is dealing with the white blood cells...and mine work amazing so maybe I should go and try. You already know my disease is autoimmune so my immune system is superman and is what is killing my body...ok...so I get excited and we go up there...I see Mr. and Mrs. Gaillard...then I read the sign...if you have an autoimmune disease you cannot participate. I got tears in my eyes. I wanted to actually feel like I could help someone and bam...couldn't...so everyone the most I can do for Jamie (their daughter) is ask you all to pray! and pray that someone that went today will be a perfect match!

Also...I have met a friend through blogging and her name is Kelly. I truly believe God brought us together because she too suffers with a chronic/severe diagnosed Crohn's Disease. She is in the hospital right now with an attack and I ask that you all lift her up in prayer...it is so nice to have someone who understands EXACTLY what you are going through. So in your spare time just lift her name up!!

So as of now this is my Friday...I am plopped on the couch with mr. miyagi waiting for the headache to subside. I had to run to the bathroom a second ago becuase I just got sick and started gagging again...didn't throw up but sure almost did...I have no clue what is going on...

I am going to see BOTH Dr. Rodriguez an Dr. Rider the 24th of this month. With Dr. Rodriguez we will discuss the Remicade and figure out what my routine needs to be and if the dosage needs to be raise...we have pretty much already figured out that I will need it sooner than most people...Dr. Rider was saying about every 6 weeks when most get it every 8...I'm thinking every 4...because that is when my body starts doing its crazies...so...that will be with Dr. Rodriguez. With Dr. Rider we will reassess my internal fissure and check it..make sure its not a fistula...see its size again...see if its healed no healed...all of that...if it is still there this time I'm pretty sure we are going to do the surgery so it doesn't matter to me really...whatever I have to do to get better I'm all for it!

Ok my sweet blogging friends...be blessed :) I love you all and thank you all!!!!

Thursday, May 13, 2010

Third Treatment

Ok, now how funny is this. Mrs. Rene had told me she was coming over. In my head I was thinking oh...it's time for my flush. Well she said we were waiting for the medicine. I WAS GETTING MY THIRD TREATMENT! I had told my mom yesterday "Mom...I can't tell the treatments are working, but it's like my body is ready for one." In the last post I was talking about how bad and crazy things have been getting...well along with those things the biggest sign is I get terrible headaches and can't sleep...it's like my body is ready. So again this morning I told my mom the same thing. So when I found out it was my third treatment...I was happy in the sense that my body would get what it wanted, but not happy in the sense because I know what the treatments do to me.

I had searched on youtube and mom and I had found a few videos of Remicade infusions...I was like hmm...I want to try this. I didn't actually film during the treatment because Mrs. Rene and I had too much to talk about, but I did film the prep and start of the treatment and after the treatment. IT IS AMAZING THE DIFFERENCE!!! Dad and I compared my eyes and after the treatment they are completely black and swollen...my face, under my chin, my neck...all is swollen. I'm teling you...this stuff is serious! I just wanted you all to have another true look into my little world! Not for my sympathy...heavens no...remember that this blog is my testimony for the One who loves me more than anyone ever could. This is for my Jesus...so that everyone can see that yes, trials may come, but He is the only way to get through them! He will bring you out of them...and if He doesn't right away...it is ok...the Bible says that on Earth we will be persecuted...this is not my heaven nor will it ever be. I will go to my perfect place when I am away from this earth. Sorry I got off on a sermon...just reminding you this story is dedicated to My Jesus...because He is the only reason I am still here as of right now. Too many close calls...so I guess you can say Allison Kelly is a miracle. -that really makes me smile...even in my physical pain and emotional strain right now...it makes me smile-

On the videos it may be hard to hear everything and I apologize...just cut up your volume and listen listen. This is getting my port, prepping my port-making it sterile, accessing the port, flushing it with saline and heparin (blood thinner), and then getting the Remicade hooked and connected, and lastly connecting the Remicade to the IV Pump and programming it to do its job. This infusion treatment lasted about 3 hours all together. Again Mrs. Rene is my nurse. She wasn't even working today, but worked a half just to do my treatment. I tell her she is my angel from My Jesus :)! During the infusion you feel the Remicade going through...you can even smell and taste it almost. You first begin to feel the exhaustion -that was about 45 minutes in this time. Started swelling about 30 minutes in along with the throat so I chugged some Benadryl. About an hour into it the pains of the joints started to I took my Darvocet. I had forgotten to take the two before the treatment because ummm I was retarded and thought it was a flush...remember :) lol. Okay....so after treatment she flushes port again with saline...then with heparin...and discontinues it and covers it with gauze. Although it is a noncoring needle which means it seals up as the needle is pulled out...blood still can seep out with the discarding of the needle. So that is the process and here are the two videos.











I Don't Think May Likes Me

So my life has been just a little crazy lately. Last Wednesday I had gone to the store to help them for just a little. When I went to leave I ended up getting in a wreck. I was driving down Forest Avenue and a lady pretty much ran through a stop sign. There was nothing I could do so we t-boned. Thank the sweet Lord that I was in my mother's suburban because it saved my life. (1-Lady had suspended license for 13 years and 2-was uninsured). Well the wreck threw my Crohn's into a crazy. As you all know it is an autoimmune disease, but it is also an inflammatory disease. So the wreck set it OFF! I wasn't going to go in the ER, but one of my neighbors told me I needed to...he knew how bad my Crohn's was and was worried about my port and all.

So go to the ER. When we were sitting in there I said "Ok God...I know everything happens for a reason...I may not understand, but I love you God and I am not mad." I then thanked Him for keeping me safe. I won't get into all of the ER business because I won't be very nice about it all. Good part however is that I will say that I pretty much got anti-inflammatoried up (that is a made up word by me and I like it so there)-I got Decadron and Toradol- As of today my left knee and right ankle are still bruised and bothering me, but they are getting better. My tummy on the other hand has been as mean as can be. I don't know what it's like to have a flat stomach anymore. The last two weeks it has swollen to the size of 9 months pregnant...no lie...and will refuse to de-swell...yet again another made up word.

Haha - let's back track for two seconds. After the wreck I was in a pretty good state of shock. So mother and I are sitting in the room and I said "Well Mom, I MUST be doing something right as a Christian, because Satan is just after me!" We both started laughing and just nodded. -sweet Mommy daughter sad/upset/funny moment...priceless-

Ok...so a lot has been going on with my stomach. I'm talking about a wide range...I will name - swelling, burning, rolling, stabbing pains, throbbing pains, spasms to the point you can see them -it looks like a baby kicking-, sinking in on one side and swelling on other- EVERYTHING it can do...it is doing. So that is kind of just short case of all of that. Now for a little deeper we shall talk about a few days.

Saturday - Relay for Life. I woke up feeling TERRIBLE. I don't even think that word describes. I couldn't eat. My stomach would get nauseated at the word. My stomach was killing me and my family and I had to sing. Get up to the park and I'm still feeling terrible. Still couldn't get anything in my stomach. I kept gagging like I was going to throw up, but didn't have anything to come up. It was like dry heaves all day. I kept sipping on coke trying to settle. Finally I started feeling slightly better mid day and finally was able to put something in my stomach around 5. Not good day, but Relay for Life was amazing. We got to spend time with our friends the Revelators!

Yesterday - Woke up...went into store to do a few monograms. About 9:30 I ran out of the office into the bathroom and threw up. Number one I hadn't had anything to eat...so it was nothing but acid and came out in foam. I am so not joking. I threw up two more times and it had green this time so I knew I was to the bottom of my stomach and it was bile. I was so thankful that unlike the other time I didn't throw up stool. Well after that mom tried to get me to eat, but I couldn't. I felt terrible. I just started crying and Mrs. Janice came in and hugged me. So about an hour later I run as fast as I can to the bathroom again, but this time I had to do the other. Ok...so completely emptied out and still don't feel well enough to eat. Around 12:30 Andrew came to get me and we went somewhere to eat lunch...I attempted and was able to get a little down. Went back to the store to monogram a few more things. My throat started swelling up. I was like oh no...so I grabbed the Benadryl and took two. Well it was to the point I was having trouble breathing so Andrew and I rushed home. When we got home I was headed to get the liquid Benadryl to take some more, but I ran to the bathroom and started gagging again. I wasn't able to get hardly anything up except acid again. I stayed in there for a little while then Andrew got me to take some more Benadryl. Didn't get much sleep at all.


Will post today's actual blog in another post...just catching everyone up!

Monday, May 3, 2010

Oops...Catch Up

Ok...so I know it's been a little while, but oh goodness have I been busy raising and promoting our team the Purple Hearts for our "Take Steps, Be Heard for Crohn's and Colitis"! I am so thankful that God bless my life with the event. It has truly helped me emotionally in the sense that I know I am telling my story to others (which is glorifying my Awesome and Mighty God) and also I am promoting awareness for not only Colitis, but the disease that I suffer from daily...Crohn's Disease! Another reason I have not been on is...I truly have not been feeling well at all! So here is the update of everything plus my doctor's appointment with Dr. Rider (the check up on the internal fissure).

April 29, 2010 was my check up appointment with Dr. Rider. My sweet Andrew drove me down to Mobile and went with me to my appointment. Well I will make this short. He asked how I had been doing...told him my rectum was still bleeding with bowel movements and still having some pain. As far as the Disease all together I had been feeling terrible and was getting NO SLEEP! That is not his job to control my Crohn's but he is so kind he always makes sure to ask. Well he then took me to the exam room and Andrew stayed behind. Yet again I feel the pain as the evil pediatric anascope is inserted up my rectum...yet again warm feeling and I know it's the light! Ok...so now for the result...INTERNAL FISSURE STILL THERE!!! HOWEVER! We are going to wait 4 more weeks before we do a surgery! He said the the fissure has shortened JUST A TID BIT! not much...he said that even though it was hardly a great change at least it was a change. He said that he just hated to do the surgery and inflict more trauma on the area. With all the surgeries in the past I think he is just trying to give me time. He did go to say that in 4 weeks if still there we would go ahead. He explained the procedure again. He could tell I wasn't feeling well at all and was trying to lift my spirits. He said "HEY...AT LEAST YOU ARE 500% BETTER!" I knew physically the way I was feeling I wasn't, but I knew he was referring to my rectum and anus. He always is so positive no matter what. Let me remind you...He is the precious doctor that was like...on a scale of 0-10 your Crohn's Disease's treatability is a 3! which was great! He later apologized and we laughed with me saying it was a 10 and him agreeing that it was a "bad case"! He then patted me on the back and tried to give me a smile.

He also checked my blood clots and said that indeed I had phlebitis. Phlebitis is just a simple term for inflammation of the veins. It causes them to have terrible pain and harden. He told me that I could go back to my one time a day baby aspirin...but right now I think my anemia is back so I will pass. Oh yes...like two days ago...I was taking a shower...the shampoo bottle dropped on the shower floor...IT DID NOT HIT ME WHEN IT FELL...it hit the shower floor then slowly rolled and rolled against my leg...NO LIE...my leg swole up...skin broke and it bled for about 10 minutes while I was in shower...talk about crazy! Yeah...so you can tell I'm weak and fragile...and anemic. So no aspirin for me.

Next...as for the the sleeping...he asked if I had some sleeping pills from back in December when I was having all the trouble with sleeping from the hospitals. I told him I did but the Ambien made me LITERALLY CRAZY! He said of course it does its a hypnotic...he then told me I needed to call my primary doctor and get on something, but in the mean time take the Ambien. With getting no sleep my disease gets more angry and I don't get any better...actually worse. So that night of the 29th...came home...Andrew convinced me to take the Ambien but told me to GO DIRECTLY TO BED...DON'T CALL ANYONE...DON'T CALL HIM! Well I did the first part...I got in bed and took it...well whoops I called him! I started seeing the fan light flash...and I thought I was at a disco party LOL! I don't remember much after but he said I started talking to people and over the phone he said Allison who are you talking to and I said MY FRIENDS! He said I would just laugh and starting talking crazy so he just hung up! WRONG THING TO DO! I couldn't remember his number knocked over the phone...I do remember this...knocked over a drink and somehow managed to call back...HE DIDN'T ANSWER! lol...Ambien was making me CRAZY MORE! So...forgot this part...I figured he was playing his PS3 online so I called my dear friends Martha and Ryan at 1 am! I was slurring my words Martha said...Ryan was laughing at me and I was like...Ask Ryan if Andrew is online and tell him to call me...she got him to check and he wasn't....ok...so that is the story. Everyone told me the next day of my insane-self! I felt terrible! Ryan and Martha found it amusing...Andrew just said he was scared lol! Needless to say I didn't take it the next night just because! Well I didn't get HARDLY ANY SLEEP!

Saturday we had a little yard sale...rain messed that up but we did raise $50! Praise God! Aunt Dana, Adriana, and Aunt Ang raised %430.00! How Awesome is God! They said half were just donations! They are awesome team members! All of that went to our team! Praise God! So Saturday and Sunday I took Ambien...I was a good girl and hid my phone and went to sleep...it helped a little...not much so I will just have to see Dr. Scoot sooner or later! I'm just trying to prevent going in a sick doctors office with my sweet little lowered immune system from the treatments!

I think I have a port flush and check this Thursday! Whoop Whoop! Next treatment = Third Treatment is May 27 I think! June 1 - last day to turn in money for our team to count towards "Grand Marshall's"! June 5 - Take Steps!!!!! We found a hotel like 4 miles from park and it has indoor pool! I can't wait...I have been so embarrassed to go to a public pool where everyone is because my stomach swelling and my port so it will be nice to sneak in a pool with not a lot of people!!!!

Tonight I got sad. I couldn't really eat today. My family was fixing supper...the smell made me nauseous! I felt so mean. I knew they thought I was, but I can't eat when certain things when my tummy tells me not to. I know most of you don't understand...but with this disease it's like your stomach is your brain. It will literally let you know what you are in the mood for and not. If you eat something it tells you its not in the mood for you will be SORRY! I started crying and apologized trying to explain and they were so sweet...they kept telling me they would make anything, but my tummy was being so rude!!!! See with my Crohn's its not that I have a list of what I CAN EAT OR CAN'T EAT! I can eat salads, nuts, seeds...anything I want literally! BUTTTTT AT CERTAIN TIMES...MY TUMMY WILL SAY NO! It's not that I have to watch what I eat...I just have to listen to my tummy and then I watch what I eat. I can't explain it! It will either give me a certain taste in my mouth or a certain smell! Like I said before...I tell my story because with my Crohn's I'M A RARITY! I think in Mobile...I have probably been diagnosed as one of the top worst cases! No lie! They always tell me I'm just a bad and rare case!!!

As for other things...I'm finding out who my true friends are and who aren't. Lessons you don't want to learn, but you thank God for opening your eyes even though you don't want them to be!



Click on the picture to be taken to my page to donate to our team Purple Hearts for the event "Take Steps, Be Heard for Crohn's and Colitis"