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Monday, February 28, 2011

Emotions Overflowing Into Words

Lord, I love You! I need You! You are my Rock, my True Love, my Best Friend, and as Greg's song says ...even though it does hurt, You still are God! I thank you for that Lord! Help me relay everything that is making me cry, everything that is making me hurt (physically emotionally) into this post to release all that is needed. Help me to lay it down at Your feet fully, Lord! Satan is continuing to try and get me down, through all ways, through all circumstances, through all people...and Lord you know I'm not going to let Him win! he comes from every angle...I know You have prepared me for this, and I know you have given me the knowledge Lord to keep searching for the answers...Lord keep giving me the strength and keep speaking to me clearly so that I know to keep going strong...so that I can continue to stomp satans darts!

Prayer Request - Please keep The Horsley/Johnson family in your prayers! Mrs. Lisa, Brittney, and Jenny are all very dear to me. Mrs. Lisa is another momma to me and Brittney and Jenny are very very close friends! Mrs. Lisa lost her love while Brittney and Jenny lost their daddy! Mr. Tommie was a precious soul! Keep them in your prayers! Also, keep the Chancey/Wilson family in your prayers! Mrs. Debra passed away and it has been hard on the family losing such an amazing woman!

Crying. I'm trying to get in touch with my heart...I'm truly not crying because I'm sad. I'm crying because I'm mad. I'm not mad at God. I'm mad I guess at certain circumstances, but in all truth it can all be directed at the lowest thing -satan-

I didn't post of the last days and last procedures at MUSC, just because I guess I didn't want to. It was too much and just who knows.

I'm going to talk about some of it just because I want, and it will help relay some of the frustration I feel. It will also relay the many blocks satan is trying to place to stop/discourage me.

So with the colonoscopy, I didn't do well with the prep. I got a pretty good bit down, and after was very sick. I got nauseated to where I couldn't drink anymore. I used the bathroom til clear enough. I finally started vomiting and continued a few times throughout the rest of the latter part of the day. Had trouble sleeping. The morning of the procedure, I fell in the shower...I thought I was going to pass out...I told mom...that's when I pretty much just fell from standing to sitting in shower. I then started throwing up. I immediately was confused when I noticed it was pure bile and immediately just put my head down in the shower. Then I notice *sorry this is horrid terrible but its my blog* as I'm vomiting, I'm also using the bathroom *number two...yes* ....so I'm literally profusing from both ends...which is not a good thing. After finally finishing and getting cleaned up again I get ready and we head to MUSC. Not much to say about all of that except I was in a lot of pain before and after.

Frustration - the fact that there wasn't much care in the fact of profusing out both ends and trying to get to the bottom of hmm...that's not right? why would that happen? most people in there were doing ok. I had to be wheeled in, in a wheelchair I was so weak and sick. When the same incident happened back in march a year ago...that's when all the worst happened and when I ended up in the hospital for 5 days, followed by surgery for my port, followed by immediate infusion treatment therapy. uhhh...so a little confusing and frustrating because I am like ummm no sense...I'm just voicing out here....

So since I've been home...I've tried to act normal, do normal...*not that I'm going out, having fun and partying up...because I'd pass out in two seconds* *just mean trying to do a little more as I can...trying in all to get stamina up a little more and just pushing myself a little more everyday every time*

As far as how I've felt - well as soon as I got back I had a treatment...so of course I'm very tired/weak/etc. after treatment. I thought maybe that I was just going to be all better *maybe my cold/sweats weird phenomenon things that NO ONE CAN FIGURE OUT AND FIX would just disappear/ that the nausea would just go away/ in all maybe just like a magician I would be ALL BETTER! We didn't get that many answers so I mean ya know...who knows...maybe I would just be better...haha

Well I can't account for all the days, (they have for sure been ups and downs)  but yesterday evening til late last night - terrible migraine and terrible nausea. Today, just pure nausea and very weak. Uncle Mickey actually called and was worried that I was on a medicine that was making me messed up because I sounded messed up...when I get so nauseated/weak/sick it makes my voice sound so soft to the point I sound like I'm just going to fall out. It honestly makes me more sick to speak.

So I'm going to get scatter brained on ya now and talk about the VIAL ONE!

With all of this...it's as I say...frustrating because not really that many extra answers to my health. and to be honest...the doctors are all throwing their hands up because I'm like the patients on the show MEDICAL MYSTERIES! Somethings wrongs, signs and symptoms are there, but they don't know and I'm too much of a liability, so just give up and push me off! So...

What do we know:
*We know not cancer...YAY!
*We know that the Remicade is working - so that is good...with that we need to STRONGLY PRAY that the Remicade will last for as long as it can because it does wear off after time. We can raise it one higher dose and after that no more.
*We know my intestines aren't absorbing certain vitamins at times and we are fixing my Vitamin D right now with a 50,000 unit pill on Mondays for eight weeks.
*We know that the stricture that was above my stomach was fixed by the doctor pushing past it with the scope softly to fix the stricture and he was able to.

So we are left with not knowing:

*Why I am having these cold/debilitating/sweats still. Where they come from. They are terrible. All I can do is lie under about five blankets. When they happen I soak through my clothes. If happens when asleep my body soaks the bed, sheets, mattress. Right now today I didn't have to get blankets, but I would get chills up back, freeze, and just sweat through clothes. It's hard to pull down pants when use bathroom because they stick to me. It's hard to take showers, because I have to get it so hot to try to keep my homeostasis in balance. Then when I get out, I immediately start sweating and it's so hard to put on clothes because they stick to me. They are strange

*The persistent nausea that makes me not want to eat. Also, just this terrible queasiness in the stomach.

*The headaches and migraines here and there.

*The lymph nodes in neck just continuing to stay knotted up

*Weakness


We went to Dr. Comerford for a second opinion. Now for me, it was more than that. I told him about Dr. Rodriguez saying it was more...that there had to be another autoimmune working with the Crohn's...that they were feeding off of each other making one another worse...Dr. Rodriguez just never could get to the bottom of what it was. Well I had told Dr. Comerford and also asked him to LOOK! Look everywhere...not just intestines. I told him about the cold/sweats (NOT JUST SWEATS...please know it is a BIG DIFFERENCE)...I know enough from nursing to know it is like a vasovagal problem...so I told him to look in my head...to see if it was something crazy like a norepinephrine leak...I'm telling you...ANYTHING! I told him he could even cut my from top of abdomen to lower...just find whatever was causing all the crazy signs/symptoms along with everything else!

I commend him on his gastro skills...but no answers on all the things...so frustration. So why I'm writing this blog tonight...it's me fighting for myself honestly. I know God is with me...I know He is backing me up...but it's me that has to find what is going on...I'm trying to pray and put my knowledge together. My pain doctor had talked with me and he is looking up things. He knows that the signs and symptoms just alone the cold/sweats are odd and something to investigate. He is trying to research things and help figure out whether I need a endocrinologist or neurologist. Other than that though...honestly not much support! I'm trying just to act like everything is ok, because I feel that is what I have to do right now.

when it's your body not functioning right, and you want your quality back...you fight for it.

Well maybe some people don't. I guess some people could give up and just lie on the couch all day...but I want to fight. I want to figure out. I want to help find out what is this!? Is it something new?! Is it something we can fix?! Why can't we find it!? Why did it take so long to find Crohn's now find what is causing this?!

satan is using different things to come after me to try and stop me from pursuing this. The thing is , Christ made me who I am because He knew that I COULD TAKE UP HIS CROSS AND FOLLOW HIM! More than that, He knew that I would keep on til I got answers...til I found it all and got better...God has picked me to carry this, because just as Job...something great is going to come! I can't let My Heavenly Father down! It's just so hard, because everything around you is trying to stop you. I can't stop!

I'm  pumping myself up, because I am going to have to do this by myself! It's just hard!

I knew for 21 years something was wrong...and I was right! I fought for it to be found...and low and behold! Not only a chronic disease, but a severe case. I know there are still answers to be found...and I'm not going to give up! I just need to keep gearing up in my Heavenly Armor and continuing through all this!

I wrote on the support group about my crazy signs and symptoms. There are so many Crohn's sufferers who have so many crazy things that are continuing to fight. Some have found their other autoimmune messing them up. Some have found that the Crohn's indeed is actually messing up other digestive organs. (I'm trying to get doctors to help find these things) I just want people to read my words and realize what Crohn's is truly.

As I have said...I don't want this for my glory...I want this for everyone fighting, for everyone that has lost somebody to this disease, for all the loved ones -family/friends- watching someone fight it...it's real and it's bad!

Also, I write these words not only for the awareness of Crohn's, but for the awareness of how GREAT and MIGHTY Jesus Christ is! Yes it is real...yes it is bad. How do you get through something like that!? With HIM! He is the WAY, THE TRUTH, AND THE LIGHT! Let me tell you...I can't imagine facing this disease ONE DAY without my Saviour! He gives strength, He gives power, but most of all He gives NEVER-ENDING LOVE! I know He is the author of  all this...and I know He has a fairy-tale ending whether here or with Him. With Christ you have faith...faith that He will provide...sustain you...and keep you safe even through the roughest of times!

If you don't know Him...I'm coming to you with a heavy heart asking you to please accept Him! He is Everything you ever need. Life was not meant to be made perfect and easy...when you accept Him, it will still be hard and non-perfect...but the great thing about it is, YOU CAN GET THROUGH IT WITH HIM!

As I said before...He gives you the strength, support, love, and knowledge to keep going...He gives you peace that everything is going to be ok!  He promises that while on earth He NEVER will leave you NOR forsake you! What a promise! With Him You CAN do ALL things! I can also tell you the BEST THING!

When you DO ACCEPT HIM...know Earth - not perfect...but you live your life for Him while here...you tell others about Him...

and what He DOES PROMISE....that you have a PROMISED HOME IN HEAVEN WITH HIM! Heaven - perfect! If you don't know Him, Please ask him into your heart! Without Him, you have nothing, with Him you have EVERYTHING! If you need help...just write me!

Tuesday, February 8, 2011

Bitter/Sweet Day - January 20, 2011

I'm a few days late on writing this...my apologies. I have been so tired, weak, and sick. No excuse, because I don't want to get behind on these posts and how I feel.

Jan 20 - Day After my Consultation with Dr. Comerford and his fellow Josh. I wrote in the previous entry that Dr. Comerford and his staff had set the DexaScan and the MRI Procedures the next day which would be the 20th!

This morning I was not feeling well. Nauseated and very weak. The weakness/exhaustion is normal due to my Chronic Fatigue, but you have to understand I was extra Fatigued due to the previous day. We had an MUSC encounter from 5 - 6...something like that.

So not feeling well already. Again Mom, Dad, Grandma, Papa, and I loaded up in their van and headed for Charleston and MUSC. When we got their we registered at Ashley's Tower (the digestive building/part of MUSC - how nice that they have their own place dedicated to Digestive Diseases). So after registering we took the Hospital Trolley Bus over to the Rutledge Tower for my DexaScan. After registering in the Radiology part of Rutledge Tower, I filled out more papers as I had for two days. They called me back and I lied on the table for the Scan to begin. Most of you women have had a DexaScan. Whenever you go for your "female check up" women over age 40 I think it is, have a DexaScan to check for Osteoporosis. So...why would I have one...? Good question...the answer is the most Absolute Amazing Answer and Genius on the Doctors Behalf.

Our bones need what. Calcium and Vitamin D. As you know with Crohn's...one of the first problems is anorexia. Not anorexia caused by the patient not wanting to eat, but anorexia induced by the actual disease. The disease messes your digestive system up to the point food makes you sick leaving you not able to barely eat. With this problem comes malnourishment. Most of you that are close to me know of my hair thinning and falling out which is due to malnourishment. Weakness, fatigue, sunken eyes...so many things come with malnutrition. Well at MUSC the Doctors make Crohn's Patients have DexaScans as a rule.

Number 1 - Crohn's Patients have to take steroids at some point in time for their disease. I have taken oral Prednisone a pretty good bit of times but the times were not long term. I also have been put on an IV Solu Medrol drip...that was for around a week once when I was hospitalized! Steroids decrease Bone Density with Crohn's patient. So that is the first reason for a DexaScan.

Number 2 - With the malnutrition and Crohn's Induced Anorexia...I do not absorb Vitamins and Nutrients as I should. The hair falls due to the lack of Protein absorbed...plus my Crohn's is opposite from most. Protein is what is always low with me because instead with my Crohn's I cannot eat a lot of meat. As I said before what are two main components for Bone Health and Density...Vitamin D and of course Calcium. With Crohn's not only do you get malnutrition from not eating...but with our intestines ULCERATED/INFLAMED/AND BROKEN DOWN...the FOOD THAT WE EVEN DO EAT...THE GOOD PARTS OF IT (VITAMINS, NUTRIENTS, ETC) ARE NOT ABSORBED....with VITAMIN D AND CALCIUM GOING TO WASTE IN MY BODY...what happens...my BONE DENSITY DECREASES LEAVING MY BONES BRITTLE AND WEAK AND PRONE TO BREAKAGE.

So...I completed the Bone Density on my Spine, Hips, and Legs. Well as a nurse I am always curious and will look at things and see if I can see differences or figure things out. I noticed on the hips and legs a lighter or brighter spot compared to the rest of my bone. It was unusual looking...All the bone was one color and then certain spots that were bright throughout. After the scan I asked the tech what that was and what she could tell. I knew that she shouldn't tell due to my past in the medical field but she was so empathetic towards my sickness and the suffering I was going through at such a young age that she open up a little. She told me at 22 they can judge my Bone Density not only as an Adult Scan but also as a Pediatric Scan. She said that at 22 it is an Adult but they will still compare...at an Adult level she said that even though she is not a Doctor she can see where the Density can be judged slightly on the low test. PRAISE THE LORD SOMETHING WAS FOUND! I have had how many tests and procedures in Alabama and NOTHING! My doctor had never even THOUGHT OF THE TESTS THEY WERE DOING AND THEY ARE FINDING THINGS!!!

Praise be to MY LORD AND CREATOR...THE GOD WHO CREATED MY BONES THAT ARE LOW IN DENSITY, THE GOD WHO CREATED MY BODY THAT IS ILL, THE GOD THAT IS BLESSING ME WITH DOCTORS WHO ARE FINDING THESE THINGS BROUGHT ON BY THE SIN OF THE WORLD! MY GOD IS AN AWESOME AND WONDERFUL GOD! I PRAISE YOU LORD FOR THE FIRST FINDING OF THE FIRST TEST/PROCEDURE THAT WAS DONE! THANK YOU LORD FOR THE FINDINGS...MAY THEY CONTINUE TO TEST AND FIND SO THAT YOU MAY SHOW ME THE ANSWERS AND WAYS YOU HAVE FOR ME! I WILL GO THE DISTANCE DEAR LORD...FOR YOU BECAUSE MY BODY IS YOURS AND I AM FEARFULLY AND WONDERFULLY MADE!!!!


Now that this was done we caught the little trolley back to Ashley Tower. I was not allowed to eat 4 hours before my MRI Procedures so when we arrived we went to the Cafeteria to grab a little something. I was also told not to eat a lot...that it must be something in small quantity and light. I told her that was no problem since I wasn't to caring towards food. So everyone got there food and I just nibbled on a few things.

We had to be at the Radiology Department for Digestive Diseases at 2 to begin the Prep for the Procedures during the MRI. When I arrived more paper work and my first nurse came and got me. I changed into my gown and then went to the Pre-Procedure Room. The nurse was so kind and caring towards my situation. I was already feeling very sick so she set me in the chair and placed warm blankets on me. They were getting everything ready to access my port.


My port was accessed and then the fun part. I had to begin the prep phase...drinking so much within so much time. They sedated me with pills to help the process. When I drink preps they always irritate my Crohn's and make my abdomen swell to the point of almost perforating. I could feel I was getting more sick with each sip, my stomach fuller with each sip, and my eyes drooping with each passing second. I asked my mom to get my phone to take pictures and she was like "No, Alli it will be ok..." I wanted it so people could see what is endured...I can't tell all the time, write all the time what is going on...and I want to try to let all of you in as much as I can. When mom saw me part way through drinking the prep and how sick I was...she got a very sad look and said "I'll be right back" She then returned with the camera and did something that is one of the hardest things to do as a parent. Take pictures of your child (crying/sick/distraught/and looking like death. I was so proud of her for her strength and loving me enough to help me with sharing my journey.

My abdomen finally swelled to popping/perforating size and I started crying. The nurse assessed and saw that no more could go and that my Crohn's was already reacting. They then took me in and I lied *ON MY SWOLLEN, HARD, AND SICK BELLY*...that was an awful feeling. The medicine helped calm me, but I was so sick and uncomfortable. About an hour and a half later they came in and pushed some IV dye through my mediport. After about I guess another hour they took me back to recovery. They flushed and pushed heparin through my port. The doctor then came in and talked to me. He told me that in the terminal ileum of my intestines (the part not able to be seen with the endoscopy or the colonoscopy) was some damage. (Inflammations/Erosion). He said that it wasn't terrible, but it was there. He said that he would get in touch with Dr. Comerford and they would decide after all procedures what to do. Whether surgery, different treatment options, and so on.

Yet not big news to the doctors...WONDERFUL news to my ear. Dr. Rodriguez whom I love so much had never done the MRI to find Crohn's problems. I know Dr. Rodriguez did everything that he could....its just there is more and I knew it. When he said I was in remission it crushed me. I knew I was getting worse, that my strength/energy was gone, that the pain was still just as bad, that my eyes are zombie-like....just small answers were giving me the little bits of peace I needed.

Mom then helped me get dressed and all I can say is I was sick the whole ride home.

Sorry this is posted so late! I'm so terribly sick and have been and it's been so hard to post and keep updated...so this is catching you up from that procedure day!

I love you all and please please pray that they will find something...you can even pray for something not good....because they are the best and I have Christ and this all will be fixed...we just need to find the problem!

Much love!