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
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!