I'm back. It's amazing how I won't post for a while, due to everything being so much and everything being so overloading physically and emotionally, and then now it's I want to post due to some of those reasons.
I'm crying right now, and it's because of so many mixed emotions. Some of you might have seen that I posted about an appointment this past Saturday. It was my plan to blog about it, but I'm not sure if I don't want to just blog more of what I'm feeling right now. The appointment went greater than I could have ever expected. The doctor was the first female doctor I have seen and that was such a blessing. She was like a nurse...she listened to signs and symptoms and knew detail into the signs and symptoms with the relation to the Crohn's and Autoimmune, instead of just being like hmm...don't know.
I will give a short overview of appointment with Dr. Sharpe. My liver and spleen were enlarged along with many lymph nodes. She did see the troubles with my joints (on most of the exercises she had me do, they would continue to pop). My blood pressure was high due to pain (129/96) - crazy because my normal is 80/60. She also validated that blood work is not the tell all. Just because blood work is normal does not mean anything, along with the fact that my Remicade treatments do mask my blood panels. Agreed that there is a possibility that another autoimmune is working with the Crohn's, but also that all of this could be from the Crohn's. That would just be as we have been saying...an awful case with every sign and symptom of autoimmune diseases. She also was the first doctor to admit, that all the doctors I have seen are scared, because my case is so baffling and so severe. She also was the first to admit that when doctor's don't have an answer for everything or a why this does this for everything, that get frustrated and they don't like to admit they just don't know.
I don't want to go into detail what that specific appointment was about. There isn't much she can do for me since she is just a general practitioner, but I will keep in touch, because she seemed to know more than most of my specialist doctors when she was a general practitioner. Also, I want to keep in touch because she was a blessing for God. She made me even stronger in my beliefs of my health...I have been fighting at most times a one woman battle..and she validated everything I knew and more! So everything else was the doctors just doing/being as she said.
Now I want to get into more personal things, so stop reading if you don't want graphic please.
Along with the enlarged lymph nodes, the validated enlarged spleen and liver, the migraines, back pain, joint pain, no sleep...there has been more things that I have just overlooked. When I was just reading on the websites that I put the inserts in for the previous blog...I found things that I knew were associated but when I read it was like wow...so that really is due to the Crohn's....yet again validation that I never can get from my doctors....so now to explain.
Most of the people that I am closest with know that I have trouble eating because of the Crohn's. This disease is a digestive disease so I mean duh. When I eat, my appetite is suppressed awful. I have been having a lot of weight loss due to not absorbing and being malnourished. I'm not one to post weight but just to know how severe and critical my health is I will. In 9th grade when I played basketball in GA...I was at my healthiest...I was a solid muscle with not one jiggle, roll, flab...and even at my 5'4 stature I still was small...I just have a medium bone structure and muscular build....so being healthier than anything with a rock body...I weighed 132! hard to believe huh? Well...when the Crohn's was first found and I had the back to back colo-rectal surgeries...I had gotten to 107...which was pretty much anorexic for me. Not due because of the psych disorder anorexia but to the Crohn's related anorexia -where you lose due to not absorbing the nutrition/calories/vitamins because intestines and ulcerations and the suppressed appetite that the disease puts off. Also the disease will make you feel very nauseous to the point you can't eat or you will throw up...so I don't eat because if I throw up, I will lose even more nutrients. So....I don't know how I did it, but between 2009 and now I had somehow reached 118 and at the biggest weight A WOWING 123.......
NOW...before the app. I weighed with clothes on....IT WAS 110!!!!!!!!!! When got to doctors office...weighed me WITH CLOTHES ON.....108! With what I was wearing...I'm barely pushing a 105/106 range....that is awful for my build and structure.
I just called mom and asked her to pick me up the Pillsbury crescent rolls when she came home. I'm going to put myself on a carb/HEAVY BLAND diet...to try and get some weight but also to get SOME FOOD in my body. Right now I feel so bad and am scared to eat anything but bland because I'm having THAT much pain in my abdomen/I'm running fever/sweating cold/liver spleen enlarged of course/and just feel awful.
Got a little off...but also with eating, after I eat I do this weird cough that it's like I'm trying to cough to keep the food down. It's that it's difficult to swallow and then I cough to try to keep and get it down. Well on the website...it validated as I had believed and even talked to other Chronees who had same thing...that with Crohn's you can have difficulty swallowing the food and keeping down. It's actually embarrassing after eat. I cough to point EVERYONE notices. Sometimes I can do without, but usually not.
Next. Lately when I have been going to the bathroom, after having a BM, when I wipe there is a thick clear mucus from my rectum...it literally takes me 4 wipes to get my booty dry. Also with that, I get a discharge of like a light yellow slight brown. Well when reading it said that from the inflammation and infection of the intestines from disease that discharge and mucus would happen in severe cases. So that was something I kind of though/maybe thought didn't tell anyone because scared VALIDATED!!!
So I called mom to let her know dad made it to Chicago, and that is when I told her about my health today and about me just wanting to go strict bland right now because I knew I needed to...(you get smart about listening to your body and eating with Crohn's...so nobody can EVER tell me what to eat...it's almost like this disease becomes your baby inside...it tells you what not and what to)...so I asked her to pick up the bland things and got a little emotional just from so many things being validated!!!
After got off phone, that is when crying began and when I decided more needed to be written. I have continued searching to get all this figured out and I'm getting it figured out by myself. I just need the doctor who can say hey I knew that and treat it. That is the problem with autoimmune...it is so diverse and so individualized to each person. You have to remember that it is an AUTOIMMUNE disease....well everyone's immune system is different and diverse so think and look at it and that way.
I also was telling her about reading more into the back pains and joint pains and how they didn't have to have any other relation than the Crohn's. Most of my doctors have been digging into the back/joing/pelvies pain as associated to that other autoimmune or other disease. I knew that these came with Crohn's, but wasn't completely validated that the severity could be as they were with Crohn's. (as I have them). So yet again VALIDATION! It was like God was just putting my mind to peace through hidden things!
I'm not to sure that I won't print off all I have found and take it when I go to see big bad Rodriguez (gastroenterologist)...and be like I know you said it could be Crohn's with all this, but look...it can be this bad with this just due to the severity of my case!
:) uhhhhhhhhhhh (*sound made when much relief physically and emotionally*) My abdomen is actually hurting worse now, but I'm still happy just to have yet again been my own HEALTH PRIVATE INVESTIGATOR :)!
Please continue to pray for me...although I have one appointment down I still have 3 more this month and 1 just so far or next month. I need prayers more than you know because that's how my True Physician is able to continue my faith in this crazy journey! :) I know this had to be a little scattered, but anytime someone is trying to get health junk out in writing with different sources and add ins it's definitely going to be scattered! :)
I love you all! Please PRAY PRAY PRAY!!!!!
Monday, June 6, 2011
Pain
Right now I'm resting on the couch, and my abdomen is I wouldn't say killing me, but I would say killing me. As long as I've gone with pain...you start developing a tolerance/numbness to it. I think that is kind of sad, but also from my stand-point I think it can be good.
Also, with pain management that is a blessing from God and a much needed help!! The spinal blocks help with the intensity of my pain. Right now I would probably be heading to the hospital if it weren't for the pain management. I tell this because so many people ask..."Well if you are on pain management, you shouldn't have any pain? Right?!" Pain is one thing that no one will EVER fully understand, and it doesn't work that way. Pain is pain. You have it or you don't. What can be controlled however with pain is the intensity, the duration, and the frequency. With my patch...that helps keep my pain neutralized and then the block helps the intensity. So they work well together.
I also believe that it is one of those things, you cannot fully understand until you experience it. Even as a nurse (I had the Crohn's pains in my knees, hips, and in abdomen, but didn't know why/what related to)....I didn't understand pain. I knew I had experienced a lot of it since being a child...but didn't like I said "understand". I knew that when my patients had it, I immediately wanted to take care of it!! Well now I understand more than I ever thought I could. I try not to get aggravated when people don't understand...because I myself know I didn't.
I am going to post some inserts from websites that discuss the pains that come with Crohn's Disease and where these pains are located.... most people just think abdomen and I post a lot about rectum/anus pain. Also, you have seen me post of joints/back, etc. but here is from websites to help educate more :)
*Back Pain*
"Crohn's can cause back pain. A portion of those suffering from Crohn's also develop sacroiliitis and inflammation of lower back joints as well as the sacroiliac joint, according to Digestive-disorders.
"When the joints become inflamed, joint stiffness and lower back pain results. This pain and stiffness can spread to the pelvis and buttocks. Arthritis may eventually occur because the inflammation that is present in the digestive tract due to Crohn's can spread into the other joints."
"However, if you are among the 15 percent that do have Crohn's-related arthritis in your spine that is causing back pain, inform your physician. He may have a recommendation for treating both the sacroiliitis as well as your inflamed gastrointestinal tract."
*Joint Pain*
"Although joint pain is most common in the ankles, elbows, knees and wrists, the inflammation resulting from Crohn's disease can evolve into several different types of arthritis affecting any area of the body."
"Migratory arthritis travels throughout the body and affects different joints at different times and is typically active when the digestive system is being compromised. Pain resulting from migratory arthritis can be experienced for days or even weeks and tends to abate with the recession of overactive autoimmune activity."
No need to copy and paste or describe about abdominal pain/rectal pain...I have told you so much and enough in previous posts! I think writing this helped...when I'm in pain I always try to turn it into something positive...and writing about it turns that physical and emotional feeling into something that I can see/something that others see...and that helps in a sense! Also, it takes your mind slightly off the worst of the pain!
So if anyone reads this, it was just a release of pain! Thank you for caring to take time to read! Love you all very much!
Also, with pain management that is a blessing from God and a much needed help!! The spinal blocks help with the intensity of my pain. Right now I would probably be heading to the hospital if it weren't for the pain management. I tell this because so many people ask..."Well if you are on pain management, you shouldn't have any pain? Right?!" Pain is one thing that no one will EVER fully understand, and it doesn't work that way. Pain is pain. You have it or you don't. What can be controlled however with pain is the intensity, the duration, and the frequency. With my patch...that helps keep my pain neutralized and then the block helps the intensity. So they work well together.
I also believe that it is one of those things, you cannot fully understand until you experience it. Even as a nurse (I had the Crohn's pains in my knees, hips, and in abdomen, but didn't know why/what related to)....I didn't understand pain. I knew I had experienced a lot of it since being a child...but didn't like I said "understand". I knew that when my patients had it, I immediately wanted to take care of it!! Well now I understand more than I ever thought I could. I try not to get aggravated when people don't understand...because I myself know I didn't.
I am going to post some inserts from websites that discuss the pains that come with Crohn's Disease and where these pains are located.... most people just think abdomen and I post a lot about rectum/anus pain. Also, you have seen me post of joints/back, etc. but here is from websites to help educate more :)
*Back Pain*
"Crohn's can cause back pain. A portion of those suffering from Crohn's also develop sacroiliitis and inflammation of lower back joints as well as the sacroiliac joint, according to Digestive-disorders.
"When the joints become inflamed, joint stiffness and lower back pain results. This pain and stiffness can spread to the pelvis and buttocks. Arthritis may eventually occur because the inflammation that is present in the digestive tract due to Crohn's can spread into the other joints."
"However, if you are among the 15 percent that do have Crohn's-related arthritis in your spine that is causing back pain, inform your physician. He may have a recommendation for treating both the sacroiliitis as well as your inflamed gastrointestinal tract."
*Joint Pain*
"Although joint pain is most common in the ankles, elbows, knees and wrists, the inflammation resulting from Crohn's disease can evolve into several different types of arthritis affecting any area of the body."
"Migratory arthritis travels throughout the body and affects different joints at different times and is typically active when the digestive system is being compromised. Pain resulting from migratory arthritis can be experienced for days or even weeks and tends to abate with the recession of overactive autoimmune activity."
No need to copy and paste or describe about abdominal pain/rectal pain...I have told you so much and enough in previous posts! I think writing this helped...when I'm in pain I always try to turn it into something positive...and writing about it turns that physical and emotional feeling into something that I can see/something that others see...and that helps in a sense! Also, it takes your mind slightly off the worst of the pain!
So if anyone reads this, it was just a release of pain! Thank you for caring to take time to read! Love you all very much!
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!
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!
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!
Wednesday, January 19, 2011
MUSC - The BIG Day
…ExhausteD…
The internet defines this adjective better than any way I could relay to you how I feel. So…what defines this word?
- Drained of energy or effectiveness; extremely tired; completely exhausted
- Depleted of energy, force, or strength
- Drained physically
"the day's events left her completely exhausted--her strength drained"
I literally am too exhausted to even type this. I felt that the internet could define the way I felt better than my brain could relay to you.
…HopefuL…
- Having or manifesting hope
- Bright: full or promise
The word and definition that describes how my heart feels! To describe today in every perfect detail would be impossible! All I can say is I know that God has perfectly planned and designed all of this to go according to HIS WILL!!
We just got home – 4:00 pm! Grandma, Papa, Mom, and Dad all went today! We started out at the hospital this morning at 7:45. We registered me as an in/out-patient and proceeded to meet with the man who we are hopeful will change my life! After much paper – work, I entered the room and talked to one of Dr. Comerford’s fellows. A fellow here is a med student that is precepting…pretty much finished but have to work under an experienced doctor before being able graduate. After talking with Josh (his fellow) I felt relieved just from him listening. Dr. Comerford came in after Josh and his presence (Dr. Comerford’s) was filled with such a spirit! He listened closely and was very receptive and empathetic to the entire situation/my case/the severity/EVERYTHING.
Dr. Comerford told my family and I; that Dr. Rodriguez truly had done everything in order as it should for my case. He also said that Dr. Rodriguez had done exactly as he would have from the beginning till his time that he couldn’t go further.
Dr. Comerford is the next step, so we ARE in the right place and with the RIGHT doctor! It was so nice because at one point he asked us what we wanted. He knows we have traveled so far with *me* who is so sick and he knows we ARE desperate and at the end of our rope with everything. He knew we were there for him…so he asked. “Are you wanting me to give you my opinion of what I think and what I feel you need to do? …or… Are you wanting me to evaluate and do as I feel to treat and help the situation?”
Just asking this question flooded my body with endorphins. Here is a man who is the best in the South and he is asking me “Are you ready?” – That is how I took it…no matter what I was getting help!
I AM GETTING HELP!!!!! I AM GETTING EMPATHETIC/COMPASSIONATE/CHRISTIAN HELP!
So how did we answer!? I shook my head up and down before he even finished the second question! I said “Yes sir, I want to stay. I’m here to get help. I already planned to stay, so if it takes a year I’m here!” I have never found myself so eager to do something that is so drastic. Let me explain on this:
(For most people receiving special treatment related to a chronic disease, they want to be nearest to the people they love. Not only because they want to, but because being around the people you love most is helpful in treatments and anything being done/performed. Having the people you love helps you have that security and emotional stableness you need…. Being hurt physically by the disease affects you emotionally just because the pain/sickness/change, so emotionally the love and bond from family helps…) so for me to say I will stay *knowing mom dad Andrew and add are away* is saying that I am READY to get my healing!!! That I understand this is my chance, and I want to take it even if it means it will be hard!
Dr. Comerford talked more and then he began talking about tests – what they do – how they do it – that he wanted to do them – so scheduling was next.
Here are the tests just that we know of today. I will tell what kind of test and what it will check for :
Dexa Scan – Tomorrow – there @ 10:15 – start 10:30 – Dexa Scan checks my bones. With Crohn’s, you WILL take steroids, you will take MANY steroids. Steroids are not good for the body because they break down the bones. He wants to check to see if there is any break down and to see if there is any damage from the steroids to my body.
Blood Work – Today – They accessed my MediPort and took the vials needed – I’m sure much much MORE blood will be taken while I’m staying here!
MRI – Tomorrow – there @ 2:00 – start 4:00 – He is doing this to check my digestive system. See if he will be able to tell anymore with this test….damage/breakdown
Colonoscopy – February 10th – 8:45 – All of you know what this procedure entails. This is the procedure that diagnoses Crohn’s!
Endoscopy – February 10th – follows with Colonoscopy – This procedure inserts scope through mouth to see into stomach and small intestine.
Follow – Up Consultation – February 24 – We will figure out what is next. Figure out what other measures need to be taken. Just listen to the doctor and get help pretty much!
After seeing the doctor we had to schedule all the appointments. Mom cried because she was sad that they would be leaving and me staying for the tests. They will come back up, but I’m staying to keep rest and not wear out going back and forth. Also in case they need any more quick tests like blood, etc. while I’m here. After we scheduled appointments, we had to do a pre-consultation for the colonscopy and endoscopy with the nurse.
We then moved from the digestive disease department to the Pre-Operative Department. They needed to access my MediPort and also they needed to have a Pre- consultation about the anesthesia part of the colonoscopy and endoscopy with My Family and I. So that took a long time. The nurse had to access my port twice. She missed it first time.
Everything was just nice and everyone was so empathetic and nice as well! I’ve never seen a hospital as big as this one! It’s absolutely beautiful! It’s big and spacey, it’s clean, it has character, the people are compassionate, everything is laid out so well….it’s just amazing!
So after Doctor was seen, after all the scheduling, after the pre-procedure consultation, blood work, anesthesia consultation, all that, we headed out and headed home!
It is bittersweet as with every big and important thing in life. I’m sad that I will be gone from all that I love so much! But then I am excited for all that is in store for my health and staying here! I know being away and concentrating on getting better and MUSC will be best for me. I can rest here and Grandma and Papa will take care of me. I am just indescribable right now. I’m looking so forward to all.
The Doctor had asked me…”What most do you want back?” I had already actually thought of this question before, so upon the question I was extremely overcome with emotions as I answered “I want to be able to eat again. To be able to enjoy the food I CAN have…to be able to taste good, to be able to actually WANT to eat…get the appetite back…be without nausea while eating. I needed my energy back. I need to be able to do my activities of daily living without feeling exhausted and overwhelmed.
I WANT MY LIFE BACK”
Like TODAY – Its 7:15 now writing this, and my eyes are closing as I’m typing. So there may be lots of errors because I’m so sleepy and exhausted writing all this out. If parts don’t make sense I’m sorry. I just felt led to write all this to the best I could to inform you all of everything. You all have stood by my side, prayed me through this, and encouraged me at all times…your love has meant more than you know and you deserve to be a part of each step taken! I love you all and can’t thank you enough!
As for phone calls. You are more than welcome to call. If I don’t answer just know that either I could be sick, sleeping, exhausted, at an appointment….my intentions to speak to you are there…it just not might be the exact time of the call. I promise if you leave a message I will get back to you eventually!
Thank you all so so much! I love you!
The internet defines this adjective better than any way I could relay to you how I feel. So…what defines this word?
- Drained of energy or effectiveness; extremely tired; completely exhausted
- Depleted of energy, force, or strength
- Drained physically
"the day's events left her completely exhausted--her strength drained"
I literally am too exhausted to even type this. I felt that the internet could define the way I felt better than my brain could relay to you.
…HopefuL…
- Having or manifesting hope
- Bright: full or promise
The word and definition that describes how my heart feels! To describe today in every perfect detail would be impossible! All I can say is I know that God has perfectly planned and designed all of this to go according to HIS WILL!!
We just got home – 4:00 pm! Grandma, Papa, Mom, and Dad all went today! We started out at the hospital this morning at 7:45. We registered me as an in/out-patient and proceeded to meet with the man who we are hopeful will change my life! After much paper – work, I entered the room and talked to one of Dr. Comerford’s fellows. A fellow here is a med student that is precepting…pretty much finished but have to work under an experienced doctor before being able graduate. After talking with Josh (his fellow) I felt relieved just from him listening. Dr. Comerford came in after Josh and his presence (Dr. Comerford’s) was filled with such a spirit! He listened closely and was very receptive and empathetic to the entire situation/my case/the severity/EVERYTHING.
Dr. Comerford told my family and I; that Dr. Rodriguez truly had done everything in order as it should for my case. He also said that Dr. Rodriguez had done exactly as he would have from the beginning till his time that he couldn’t go further.
Dr. Comerford is the next step, so we ARE in the right place and with the RIGHT doctor! It was so nice because at one point he asked us what we wanted. He knows we have traveled so far with *me* who is so sick and he knows we ARE desperate and at the end of our rope with everything. He knew we were there for him…so he asked. “Are you wanting me to give you my opinion of what I think and what I feel you need to do? …or… Are you wanting me to evaluate and do as I feel to treat and help the situation?”
Just asking this question flooded my body with endorphins. Here is a man who is the best in the South and he is asking me “Are you ready?” – That is how I took it…no matter what I was getting help!
I AM GETTING HELP!!!!! I AM GETTING EMPATHETIC/COMPASSIONATE/CHRISTIAN HELP!
So how did we answer!? I shook my head up and down before he even finished the second question! I said “Yes sir, I want to stay. I’m here to get help. I already planned to stay, so if it takes a year I’m here!” I have never found myself so eager to do something that is so drastic. Let me explain on this:
(For most people receiving special treatment related to a chronic disease, they want to be nearest to the people they love. Not only because they want to, but because being around the people you love most is helpful in treatments and anything being done/performed. Having the people you love helps you have that security and emotional stableness you need…. Being hurt physically by the disease affects you emotionally just because the pain/sickness/change, so emotionally the love and bond from family helps…) so for me to say I will stay *knowing mom dad Andrew and add are away* is saying that I am READY to get my healing!!! That I understand this is my chance, and I want to take it even if it means it will be hard!
Dr. Comerford talked more and then he began talking about tests – what they do – how they do it – that he wanted to do them – so scheduling was next.
Here are the tests just that we know of today. I will tell what kind of test and what it will check for :
Dexa Scan – Tomorrow – there @ 10:15 – start 10:30 – Dexa Scan checks my bones. With Crohn’s, you WILL take steroids, you will take MANY steroids. Steroids are not good for the body because they break down the bones. He wants to check to see if there is any break down and to see if there is any damage from the steroids to my body.
Blood Work – Today – They accessed my MediPort and took the vials needed – I’m sure much much MORE blood will be taken while I’m staying here!
MRI – Tomorrow – there @ 2:00 – start 4:00 – He is doing this to check my digestive system. See if he will be able to tell anymore with this test….damage/breakdown
Colonoscopy – February 10th – 8:45 – All of you know what this procedure entails. This is the procedure that diagnoses Crohn’s!
Endoscopy – February 10th – follows with Colonoscopy – This procedure inserts scope through mouth to see into stomach and small intestine.
Follow – Up Consultation – February 24 – We will figure out what is next. Figure out what other measures need to be taken. Just listen to the doctor and get help pretty much!
After seeing the doctor we had to schedule all the appointments. Mom cried because she was sad that they would be leaving and me staying for the tests. They will come back up, but I’m staying to keep rest and not wear out going back and forth. Also in case they need any more quick tests like blood, etc. while I’m here. After we scheduled appointments, we had to do a pre-consultation for the colonscopy and endoscopy with the nurse.
We then moved from the digestive disease department to the Pre-Operative Department. They needed to access my MediPort and also they needed to have a Pre- consultation about the anesthesia part of the colonoscopy and endoscopy with My Family and I. So that took a long time. The nurse had to access my port twice. She missed it first time.
Everything was just nice and everyone was so empathetic and nice as well! I’ve never seen a hospital as big as this one! It’s absolutely beautiful! It’s big and spacey, it’s clean, it has character, the people are compassionate, everything is laid out so well….it’s just amazing!
So after Doctor was seen, after all the scheduling, after the pre-procedure consultation, blood work, anesthesia consultation, all that, we headed out and headed home!
It is bittersweet as with every big and important thing in life. I’m sad that I will be gone from all that I love so much! But then I am excited for all that is in store for my health and staying here! I know being away and concentrating on getting better and MUSC will be best for me. I can rest here and Grandma and Papa will take care of me. I am just indescribable right now. I’m looking so forward to all.
The Doctor had asked me…”What most do you want back?” I had already actually thought of this question before, so upon the question I was extremely overcome with emotions as I answered “I want to be able to eat again. To be able to enjoy the food I CAN have…to be able to taste good, to be able to actually WANT to eat…get the appetite back…be without nausea while eating. I needed my energy back. I need to be able to do my activities of daily living without feeling exhausted and overwhelmed.
I WANT MY LIFE BACK”
Like TODAY – Its 7:15 now writing this, and my eyes are closing as I’m typing. So there may be lots of errors because I’m so sleepy and exhausted writing all this out. If parts don’t make sense I’m sorry. I just felt led to write all this to the best I could to inform you all of everything. You all have stood by my side, prayed me through this, and encouraged me at all times…your love has meant more than you know and you deserve to be a part of each step taken! I love you all and can’t thank you enough!
As for phone calls. You are more than welcome to call. If I don’t answer just know that either I could be sick, sleeping, exhausted, at an appointment….my intentions to speak to you are there…it just not might be the exact time of the call. I promise if you leave a message I will get back to you eventually!
Thank you all so so much! I love you!
Sunday, September 12, 2010
Yet Again, WHERE IS MY DOCTOR!?!?!
Ok....so I have been telling most of you that I have been trying to get a hold of Dr. Rodriguez and he has yet to return my call!
September 2, 2010 - Treatment Day. I had written and told some of you that my chemo (Remicade) was going to be changed from the 5mg/kg dosage to the 10mg/kg dosage. The time was going to be decreased from every 8 weeks to every 6 weeks. Well on treatment day Mrs. Rene let me know that she had finally got a hold of Amity (Dr. Rodriguez's chemo nurse) and she had stated that the order for the Remicade was no longer in effect. I don't know how it was worded...but the point is the Remicade wasn't changing and was still 5mg/kg and every 8 weeks.
I was mad. Why? Dr. Rodriguez had told me that he had already sent in the order. He also said that he was ordering it 1- because he was scared I was building antibodies (raising dosage would change amount that body was used to so if antibodies were building it would be a change and would throw that off from happening anytime soon. 2- I'm not getting better so we needed to raise to the chemo so hopefully I would begin to feel better...I'm not going to say remission, because we are nowhere close to that....we just want me to feel better.
Ok so first problem - chemo not changed.
Mrs. Rene then informs me that the Cura-Scripts (whatever its called) did not send my chemo. (With this stupid company evidently you have to answer when they call the few days before and say yes to sending the order. Well that is ridiculous because if a doctor gave an order and it is approved by insurance...you HAVE to do what the doctor says...you don't call the patient asking are you ready. That is crazy. Whatever doctor says...goes!)
Now let me explain this. Originally Blue Cross Blue Shield (BCBS) had sent an order to Vital Care (the IV company Mrs. Julie is with) to be my Remicade supplier. They pre-mixed my chemo, brought it to the house, provided the pump that enabled me to walk around, provided the huber needle for my mediport, provided us with the heparin and normal saline (already drawn up as well), and always brought me a sweet little goody bag. Well they supplied me for a whole three treatments. After the third treatment BCBS also sent an order to this stupid place called Cura-Scripts or something like that. Well this company sent the vials of powdered Remicade and that was ALL! Mrs. Rene would have to mix on site, would have to mix with the bag of saline, had to supply the huber needle for my port, had to supply my heparin and my saline flushes, we had to HANG MY BAG OF FLUIDS WITH THE REMICADE FROM A HANGER ON A NAIL! It was just ridiculous. This company was just a prescription supplier. I didn't need a prescription of Remicade I NEEDED A TREATMENT OF REMICADE!
So anyways...BCBS never stopped the order to both places. So Mrs. Julie's company had a Remicade from the time both orders got sent. Well that company just stopped the order even though they had the order because they knew the other company was sending and they would be out money.
Well when they didn't send my chemo on the 2nd...luckily Mrs. Rene was able to get a hold of Mrs. Julie's company who still had that Remicade from that previous time. Well they saved my life because they were able to get a hold of it. All of us were just going to tell BCBS in sweet terms "Get over it" (but in worse words).
Ok...so that was the second problem.
So today which is 1 week and 3 days after treatment. I feel like a train hit me but in a worse way. I am swollen everywhere and I have called the Emergency on call doctor at Rodriguez's office. My throat was closing as well as everything else swelling so I just took some benadryl. If it gets worse he told me to go to the ER. Well we are waiting on him to call back....
We don't know what is happening right now, but we are very scared. I as a nurse am thinking one of two things:
Either I am on so many medicines that my kidneys are failing (all the swelling, plus the fact that I'm having trouble urinating...I'm having urinary retention. I have to push down like I'm having a bowel movement to be able to push the urine out)
or Either it is that I built antibodies to the 5mg/kg and I am having a bad reaction. If this is the case I will not be able to take chemo anymore and I don't have an option left because with me the chemo and upping the dosage was my last option of treatment...if this is case then I will just be put on more pills that don't work and eventually it will just take surgeries to fix problems that get worse.
So you all see where I'm at right now. I am fine...just needing answers, because whatever is happening doesn't seem too wonderful right now. I'm swelling all over for a reason. It hurts to move and it hurts terribly to get up and walk. My feet feel like they are about to pop when I walk on them....
As a nurse I know that while symptoms are worse I need a way to prove so I felt smart because I took pictures. Now you will see pictures where I push my finger to my skin and then the next picture is where I removed my finger. This shows the pitting edema. (fluid and swelling of the skin and what the depth of this swelling is/pretty much how bad) (I don't feel like explaining it all...you just will know when you see) When you press normal skin it goes straight back to what it looked like before you pressed it...Well my skin is living an indention for a little while...
What I'm feeling right now : Well I just feel bad. I feel tired. My fingers are killing me, especially at the joints. My wrists, my face (canker sores in mouth), the bottom of my feet on the pads, my knees, my hips, my legs...do you get the point...EVERYWHERE! and that is with my pain medication...its crazy
No more talking...these pictures say it all! (Also..the pictures of the pills are JUST what I had to take THIS MORNING...not all the pills for the day!)
I'm ok... I love you all...don't think I'm upset...I just don't feel very well writing this and I love you all and just wanted to keep you all up to date with me...just don't feel good! I love y'all and pray that the doctor calls soon!
September 2, 2010 - Treatment Day. I had written and told some of you that my chemo (Remicade) was going to be changed from the 5mg/kg dosage to the 10mg/kg dosage. The time was going to be decreased from every 8 weeks to every 6 weeks. Well on treatment day Mrs. Rene let me know that she had finally got a hold of Amity (Dr. Rodriguez's chemo nurse) and she had stated that the order for the Remicade was no longer in effect. I don't know how it was worded...but the point is the Remicade wasn't changing and was still 5mg/kg and every 8 weeks.
I was mad. Why? Dr. Rodriguez had told me that he had already sent in the order. He also said that he was ordering it 1- because he was scared I was building antibodies (raising dosage would change amount that body was used to so if antibodies were building it would be a change and would throw that off from happening anytime soon. 2- I'm not getting better so we needed to raise to the chemo so hopefully I would begin to feel better...I'm not going to say remission, because we are nowhere close to that....we just want me to feel better.
Ok so first problem - chemo not changed.
Mrs. Rene then informs me that the Cura-Scripts (whatever its called) did not send my chemo. (With this stupid company evidently you have to answer when they call the few days before and say yes to sending the order. Well that is ridiculous because if a doctor gave an order and it is approved by insurance...you HAVE to do what the doctor says...you don't call the patient asking are you ready. That is crazy. Whatever doctor says...goes!)
Now let me explain this. Originally Blue Cross Blue Shield (BCBS) had sent an order to Vital Care (the IV company Mrs. Julie is with) to be my Remicade supplier. They pre-mixed my chemo, brought it to the house, provided the pump that enabled me to walk around, provided the huber needle for my mediport, provided us with the heparin and normal saline (already drawn up as well), and always brought me a sweet little goody bag. Well they supplied me for a whole three treatments. After the third treatment BCBS also sent an order to this stupid place called Cura-Scripts or something like that. Well this company sent the vials of powdered Remicade and that was ALL! Mrs. Rene would have to mix on site, would have to mix with the bag of saline, had to supply the huber needle for my port, had to supply my heparin and my saline flushes, we had to HANG MY BAG OF FLUIDS WITH THE REMICADE FROM A HANGER ON A NAIL! It was just ridiculous. This company was just a prescription supplier. I didn't need a prescription of Remicade I NEEDED A TREATMENT OF REMICADE!
So anyways...BCBS never stopped the order to both places. So Mrs. Julie's company had a Remicade from the time both orders got sent. Well that company just stopped the order even though they had the order because they knew the other company was sending and they would be out money.
Well when they didn't send my chemo on the 2nd...luckily Mrs. Rene was able to get a hold of Mrs. Julie's company who still had that Remicade from that previous time. Well they saved my life because they were able to get a hold of it. All of us were just going to tell BCBS in sweet terms "Get over it" (but in worse words).
Ok...so that was the second problem.
So today which is 1 week and 3 days after treatment. I feel like a train hit me but in a worse way. I am swollen everywhere and I have called the Emergency on call doctor at Rodriguez's office. My throat was closing as well as everything else swelling so I just took some benadryl. If it gets worse he told me to go to the ER. Well we are waiting on him to call back....
We don't know what is happening right now, but we are very scared. I as a nurse am thinking one of two things:
Either I am on so many medicines that my kidneys are failing (all the swelling, plus the fact that I'm having trouble urinating...I'm having urinary retention. I have to push down like I'm having a bowel movement to be able to push the urine out)
or Either it is that I built antibodies to the 5mg/kg and I am having a bad reaction. If this is the case I will not be able to take chemo anymore and I don't have an option left because with me the chemo and upping the dosage was my last option of treatment...if this is case then I will just be put on more pills that don't work and eventually it will just take surgeries to fix problems that get worse.
So you all see where I'm at right now. I am fine...just needing answers, because whatever is happening doesn't seem too wonderful right now. I'm swelling all over for a reason. It hurts to move and it hurts terribly to get up and walk. My feet feel like they are about to pop when I walk on them....
As a nurse I know that while symptoms are worse I need a way to prove so I felt smart because I took pictures. Now you will see pictures where I push my finger to my skin and then the next picture is where I removed my finger. This shows the pitting edema. (fluid and swelling of the skin and what the depth of this swelling is/pretty much how bad) (I don't feel like explaining it all...you just will know when you see) When you press normal skin it goes straight back to what it looked like before you pressed it...Well my skin is living an indention for a little while...
What I'm feeling right now : Well I just feel bad. I feel tired. My fingers are killing me, especially at the joints. My wrists, my face (canker sores in mouth), the bottom of my feet on the pads, my knees, my hips, my legs...do you get the point...EVERYWHERE! and that is with my pain medication...its crazy
No more talking...these pictures say it all! (Also..the pictures of the pills are JUST what I had to take THIS MORNING...not all the pills for the day!)
I'm ok... I love you all...don't think I'm upset...I just don't feel very well writing this and I love you all and just wanted to keep you all up to date with me...just don't feel good! I love y'all and pray that the doctor calls soon!
Wednesday, September 1, 2010
Hopefully Just the Start of Me Becoming Pain Free
So yesterday as you all know was a very LONG and EXHAUSTING day.
First off, Dad, Andrew, and I got up very early that morning to head to Mobile. Papa Bear is what I call Andrew's dad for future reference. Papa Bear was having a heart cath and had to be at Mobile Inifmary at 8 AM. We arrive and meet Mrs. Judy in the admission waiting room. After Papa Bear finishes his papers we go to the cardiac floor. His male nurse whose name was David was a very nice man. I was very pleased with the people taking care of him. It was probably around 10 30 when he got taken back. They told us that we should receive a call in the room 30 minutes after them taking him back. They would let us know if anything was found or if the procedure was finished.
Thirty minutes later I answer the phone. We were notified that they had found a blockage. We all had know that would happen so we were not alarmed...just praying for safety. I asked the percentage but at the time he said the doctor was not sure, but they would be placing a stent. They said give about another hour, so we all took that opportunity to go to the cafe below and eat. Dad, Mrs. Judy, Andrew, and I ate and then headed back up. It was about 12 at that time and we knew that we needed to soon be heading across the street to the Physicians Pain for my appointment. Papa Bear comes back. We later found that it was a 75-85% blockage...it took 3 stents for that one blockage! Now if you have never seen Andrew's dad...he is a BIG man. We have heard so many stories about his strength...my nickname for him is Rambo! :) Well we gave him hugs and called mom. She was already on Springhill so Dad, Andrew, and I left the hospital and met her at the Physician's Pain building.
When I walked in I looked around and honestly just wanted to cry. I had already been feeling bad that morning, but hadn't told anyone. My stomach was already probably to the size of 6 mo. pregnant when we arrived.
So as I'm looking around, I see one woman who can't keep her eyes open. I see a man who looks like he was on drugs. I see another man and woman who look like they are out of it and my eyes just got wide. Andrew noticed and asked what was wrong....I just told him to look around.
In my head I was going *Lord, I am only 21 years old. Lord I suffer with pain and I need help, but oh Lord you see these people. Most are elder and most of them look completely out of it* The appointment time was set at 1.
Finally we get called back and they let everyone go back with me. I was already flared on my chest and face so I was blood red. I was running a temperature and my blood pressure (all of you should know the norm by now lol 80/60) was 130/92. I knew I was in pain, but it was like I was blocking it out from being so nervous. When she asked my pain scale, I told her a "4" LOL! Oh goodness...there was no way it could have been a "4" my adrenaline was just easing it to make me have no clue the true intensity! *Makes me laugh out loud :)*
Ok. so we go back...wait more. A man walks in. I was assuming it was Dr. Couch, but it was not. His name was Justin. He is the nurse practioner who works with Dr. Couch. He assesses and goes through the papers and gets an overall report so he can sum everything up for the Doctor. He was very kind and empathetic. (previous to this I had to fill out a big pack of papers telling what kind of pain, had to color where the pain was on body graph, describe the intensity, the type, the duration....etc etc...you get the point).So he was looking through my chart asking questions. It was even kind of cute because he mentioned he and Dr. Rodriguez worked out together and he would more than likely see him the next day (which is today)...yet again thoughts *OH LORD...more doctors to talk about me LOL* As I said he was very empathetic and very kind. He checked my abdomen...by that time it was swollen to a 9 mo. prego belly. You could tell he was amazed. He checked my joints and I explained about them. I explained my history of how we could trace back problems to 3 and that we were literally trying to make up for all those years untreated. I showed him my fat fluid filled knees. Just everything yall....I could draw this out for eternity...so I will stop at that.
Then we started talking in depth pain. I told him what I had taken. He asked about pain everday and I told him yes. I told him that I had become numb to so many types of pain. I also explained to him that when I was in pain and took my dilaudid...I would not shut up talking...reason being it's that I'm so relieved and happy because I didn't really realize how much pain my body was truly was in. I got a little emotional...the parents threw in some things and Andrew listened and took everything in.
Well after waiting little bit longer, had to urinate in cup. Dr. Couch walks in. Now before this...I had heard so many rumors about pain management doctors...everybody had talked it up so negative. What they forget is that I am a nurse and I know what types of doctors have what types of personalities and why they have to have them.
Pain doctors are not meant to be emotional and sympathetic to you. They deal with pain...something that is not understood by anyone unless you have had extensive training such as they have. Something that if treated certain ways can change a person, can make a person addictive, can make a person sluggish, can make a person mean...pain can cause so many things, but yet pain treatment can also cause so many things....with this the doctor has to have a cut/dry personality to make sure no emotional attachment is made. It is like a strict business...I hope I'm explaining it in a way you all can understand. It's not that they don't care...if they didn't they wouldn't have chosen that type of medical branch. They just know that they are in control of you in so many ways with taking on treating your pain needs.
So when he walks through the door like I said...very straight forward personality. No time for talk...listen listen explain. Asked what I used when in hospitals. He saw on papers where I had, had an adverse reaction with Morphine. I told him I took Demerol. Immediately his eyes darted and he then went on to explain how Demerol is not good if used routinely. I have not used it routinely...mine has just been a hospital and ER management. He went on to explain that I am very lucky, because with chronic pain, Demerol can do bag things. He said that they can cause seizures, but not the type where you fall on the floor and bite your tongue...he said it was the type where you fall on the floor and die. My parents and I had a wake up call to this. He then also told us that Demerol was invented by Hitler and his scientists. It was made to give to their soldiers for battle. It made them feel invincible. I nodded my head. See everyone knew I got ill on Demerol. It did make me mean, but in all honesty, it was like so much relief from a pain I thought would never go...that when people talked I got ill because I was so relieved I did not want to be bothered. So that was an interesting fact and story.
More listen listen and then looks straight at me "Is this interferring with the quality of your life?" *straight to the point* I was shocked....I told him "It says it on the papers" (see when I filled them out it came to a part where it asked what all parts it interferred on...almost everything was a 9 or 10...the pain is taking away Allison) I then started crying after I said that and said "YES! I'm tired of hurting...I'm in pain all the time" Mom then got a little emotional and said "I don't have the same Allison I had 9 months ago" That stabbed my heart when she said that. It hurt so deep. I know I'm not the same and that hurts because I will never be able to go back and change, I will never be able to say I'm Crohn's free. I will in heaven, but not here.
So after this, this is when I just felt so much peace from God. I was thinking this guy doesn't believe me...and then for 5 seconds Dr. Couch let his guard down and let a slight bit of emotion come through. "I can see it. I can see it in your eyes that you're tired, that you're in pain, that you're tired of being in pain, tired of hurting." For those 5 seconds I just wanted to fall to my knees and thank God. Here a man that studies and knows what pain is better than anyone else...could SEE...he COULD SEE! I wasn't crazy, I wasn't making it up, to all those people that said I wanted a high, to all those people that didn't believe me...it just allowed so much built up emotional pain release. Who cares if they didn't believe or know the truth...the man that knows it better than anyone KNEW and STILL DOES! THANK YOU LORD! THANK YOU FOR LETTING SOMEONE SEE MY INSIDE ON MY OUTSIDE! It's so hard having people tell you, oh you look so good. Yes I might, but oh the inside of me hurts so bad and feels so bad. (I am just bawling typing this, because its like a release of just so many emotions. Happy emotions, but bittersweet. I got help...for once I got help!)
Ok...calming down. So after this we went on to discuss treatment. We are stopping the Dilaudid and Darvocet. Here is what I will be on and what he gave me.
Fentanyl Patch 25 mg - He said that if by this weekend the 25 mg was not making the pain go away to go ahead and put another patch on making it 50 mg. Every 3 days I change the patch.
(copied from website - strong prescription pain medication for moderate to severe chronic pain that can provide long-lasting relief from persistent pain. Through its innovative patch technology, DURAGESIC® delivers fentanyl, an opioid pain medication, into the body slowly through the skin, where it works to relieve pain for up to 3 days (72 hours).DURAGESIC® is strong medicine for serious pain. The DURAGESIC® patch should only be used when other less potent medicines have not been effective and when pain needs to be controlled around the clock.)
Ultram 50 mg - 3-4 times a day
(copied this from a website for you all - Tramadol is a man-made (synthetic) analgesic (pain reliever). Its exact mechanism of action is unknown but similar morphine. Like morphine, tramadol binds to receptors in the brain (opioid receptors) that are important for transmitting the sensation of pain from throughout the body to.)
Zipsor 25 mg - can take up to 4 a day He really wanted this one because he said that it would be good for my Crohn's. You don't even have to digest. It is a gel and once it reaches the pH of your intestines...it bursts and is absorbed! How neat...but oh HOW EXPENSIVE!
(Also copied this - Zipsor liquid-filled capsules contain the nonsteroidal anti-inflammatory (NSAIDs) medicine diclofenac. This medicine works by reducing hormones that cause inflammation and pain in the body. Zipsor liquid-filled capsules are used to treat mild to moderate acute pain.)
Also. He is going to check with insurance first then set up an appointment. This is my 4th treatment for pain. They will take a needle and go in on both my left and right side of my lower lumbar and inject a medicine directly into the spinal nerves that control my abdomen. This medicine deadens the nerves and will give relief supposedly up to 2 months. If I like it...they can go in and deaden and burn the nerves.
Now. After he told me my four types of treatments. He said that the patch could be upped as we find what works. He then said if this system of treatment doesn't work...he said I don't tell most of my patients this, but after this THERE IS HOPE! I couldn't believe my ears. The next step after this IF this doesn't work...which I am very positive about it...we will go to a knew technology little bugger.
It is a pump planted under the skin. This pump releases medicine. What is special about it is that it is 1/100 of a dose you would take orally. This means that it is less toxic, less medicine, but more effective. See with morphine pumps they release the medicine directly into the bloodstream and it is given in full dosages. With this pump (it is called a CODMAN 3000) the catheter is placed in your intraspinal space. So that means it is directly going to your spinal which is fast relief and like I said less drug, but more effective. I'm going to copy and paste so you can read more. Anyways...he gave us a DVD and a pamphlet. He just said he wanted us to go ahead and be prepared and researched on it in case he wants to change to that therapy later. He said he has high hopes of this if our routine we have set up now doesn't seem to be controlling.
He then went on to talk about my abdoment pain and talked about pancreatic cancer patients and how they have the abdomen pain. So pretty much that is how he is treating me. Since I'm not showing wonderful signs of improvement with the Crohn's, we are going to make sure I am comfortable.
Here is what I copied about the CODMAN 3000 pump...you can research it if you like! :
Because life shouldn’t require batteries.
The CODMAN® 3000 drug pump is a proven implantable drug delivery system for the delivery of medications to treat chronic pain, severe spasticity, and cancers of the liver. This elegantly simple device features an inexhaustible power supply, and does not require the frequent replacement surgeries associated with battery-powered pumps.
FLEXTIP® Plus Intraspinal Catheter
The FLEXTIP® Plus catheter is used when the CODMAN 3000 drug pump is implanted for the delivery of medication to a patient’s intraspinal space, such as in the treatment of chronic pain or severe spasticity.
This durable catheter is differentiated from traditional silicone catheters by its innovative design, which includes a titanium-reinforced inner coil to resist kinking.
Key features include:
•19 Gauge catheter with outer polyurethane jacket
•Titanium-reinforced inner coil for maximum durability and kink-resistance
•Wide variety of anchors available
Also we are setting up MRI of spine just to make sure that the pain from my back is nothing but the Crohn's....just to make sure nothing else wrong besides that, since a lot of the joint pain is there. Now my joint pain includes my knees, hips (which pop out), back, neck....
After we finished there, mom and dad headed for home to fill prescriptions. Andrew and I went back to the hospital and stayed with Papa Bear and Mrs. Judy for a little while. Went to eat, got her something. Stayed again a little. Went to visit Mr. Walt (my bebop) and Mrs. Shirley. Got a phone call...the PRESCRIPTIONS WERE NOT SIGNED!!! I was so upset. We then figured that when Papa Bear was released they could go by and pick up rewritten prescriptions...they are listed on my papers (as future in laws) which means they are allowed access to all my records...access to if something happens. You know all that good stuff. so I was VERY thankful that I had listed them and that God had that aligned the way He did. See not just anyone can go and pick up prescriptions for you at a pain management...and truly you are supposed to have the pain patients drivers license. We had left a message however and the nurse said that if their name was on my paper that would suffice since it was their mistake! So they dropped my prescriptions to me at Gifts and Giggles and I placed the patch on at about 2 00 pm today.
Dr. Couch said it would take 10 - 12 hours to kick in so I had gone ahead and took 2 dilaudids this morning because I was hurting pretty bad. So I'm sitting at the store right now. I have a treatment tomorrow at the hospital. Mad about that because remember Dr. Rodriguez said he was raising chemo and cutting shorter...well got news that he isn't doing that and he never informed...ok calm down not getting into that! So I have a treatment tomorrow and we have about 60 soriety bags that have to be done and I didn't want Mrs. Becky having them all on her so I told her I would stay later tonight to get as much done since I will be out the rest of the week resting from the bittersweet treatment.
I love you all! Without your prayers yesterday, yesterday would not have gone as well as it did! Thank you for prayers for Papa Bear. He is safe at home right now and recovering every second! We are so thankful God watched over him and still continues to! Just yet again to all of you that sent up prayers...THANK YOU! I love you all! I am hoping that this is the start to ALLISON MARIE KELLY BEING PAIN FREE!!!!! I know it will take time for everything to build up in my system and for the pain to start truly being relieved but I am just so excited knowing that this is just the beginning!
Yet again I LOVE YOU ALL AND GOD BLESS!
First off, Dad, Andrew, and I got up very early that morning to head to Mobile. Papa Bear is what I call Andrew's dad for future reference. Papa Bear was having a heart cath and had to be at Mobile Inifmary at 8 AM. We arrive and meet Mrs. Judy in the admission waiting room. After Papa Bear finishes his papers we go to the cardiac floor. His male nurse whose name was David was a very nice man. I was very pleased with the people taking care of him. It was probably around 10 30 when he got taken back. They told us that we should receive a call in the room 30 minutes after them taking him back. They would let us know if anything was found or if the procedure was finished.
Thirty minutes later I answer the phone. We were notified that they had found a blockage. We all had know that would happen so we were not alarmed...just praying for safety. I asked the percentage but at the time he said the doctor was not sure, but they would be placing a stent. They said give about another hour, so we all took that opportunity to go to the cafe below and eat. Dad, Mrs. Judy, Andrew, and I ate and then headed back up. It was about 12 at that time and we knew that we needed to soon be heading across the street to the Physicians Pain for my appointment. Papa Bear comes back. We later found that it was a 75-85% blockage...it took 3 stents for that one blockage! Now if you have never seen Andrew's dad...he is a BIG man. We have heard so many stories about his strength...my nickname for him is Rambo! :) Well we gave him hugs and called mom. She was already on Springhill so Dad, Andrew, and I left the hospital and met her at the Physician's Pain building.
When I walked in I looked around and honestly just wanted to cry. I had already been feeling bad that morning, but hadn't told anyone. My stomach was already probably to the size of 6 mo. pregnant when we arrived.
So as I'm looking around, I see one woman who can't keep her eyes open. I see a man who looks like he was on drugs. I see another man and woman who look like they are out of it and my eyes just got wide. Andrew noticed and asked what was wrong....I just told him to look around.
In my head I was going *Lord, I am only 21 years old. Lord I suffer with pain and I need help, but oh Lord you see these people. Most are elder and most of them look completely out of it* The appointment time was set at 1.
Finally we get called back and they let everyone go back with me. I was already flared on my chest and face so I was blood red. I was running a temperature and my blood pressure (all of you should know the norm by now lol 80/60) was 130/92. I knew I was in pain, but it was like I was blocking it out from being so nervous. When she asked my pain scale, I told her a "4" LOL! Oh goodness...there was no way it could have been a "4" my adrenaline was just easing it to make me have no clue the true intensity! *Makes me laugh out loud :)*
Ok. so we go back...wait more. A man walks in. I was assuming it was Dr. Couch, but it was not. His name was Justin. He is the nurse practioner who works with Dr. Couch. He assesses and goes through the papers and gets an overall report so he can sum everything up for the Doctor. He was very kind and empathetic. (previous to this I had to fill out a big pack of papers telling what kind of pain, had to color where the pain was on body graph, describe the intensity, the type, the duration....etc etc...you get the point).So he was looking through my chart asking questions. It was even kind of cute because he mentioned he and Dr. Rodriguez worked out together and he would more than likely see him the next day (which is today)...yet again thoughts *OH LORD...more doctors to talk about me LOL* As I said he was very empathetic and very kind. He checked my abdomen...by that time it was swollen to a 9 mo. prego belly. You could tell he was amazed. He checked my joints and I explained about them. I explained my history of how we could trace back problems to 3 and that we were literally trying to make up for all those years untreated. I showed him my fat fluid filled knees. Just everything yall....I could draw this out for eternity...so I will stop at that.
Then we started talking in depth pain. I told him what I had taken. He asked about pain everday and I told him yes. I told him that I had become numb to so many types of pain. I also explained to him that when I was in pain and took my dilaudid...I would not shut up talking...reason being it's that I'm so relieved and happy because I didn't really realize how much pain my body was truly was in. I got a little emotional...the parents threw in some things and Andrew listened and took everything in.
Well after waiting little bit longer, had to urinate in cup. Dr. Couch walks in. Now before this...I had heard so many rumors about pain management doctors...everybody had talked it up so negative. What they forget is that I am a nurse and I know what types of doctors have what types of personalities and why they have to have them.
Pain doctors are not meant to be emotional and sympathetic to you. They deal with pain...something that is not understood by anyone unless you have had extensive training such as they have. Something that if treated certain ways can change a person, can make a person addictive, can make a person sluggish, can make a person mean...pain can cause so many things, but yet pain treatment can also cause so many things....with this the doctor has to have a cut/dry personality to make sure no emotional attachment is made. It is like a strict business...I hope I'm explaining it in a way you all can understand. It's not that they don't care...if they didn't they wouldn't have chosen that type of medical branch. They just know that they are in control of you in so many ways with taking on treating your pain needs.
So when he walks through the door like I said...very straight forward personality. No time for talk...listen listen explain. Asked what I used when in hospitals. He saw on papers where I had, had an adverse reaction with Morphine. I told him I took Demerol. Immediately his eyes darted and he then went on to explain how Demerol is not good if used routinely. I have not used it routinely...mine has just been a hospital and ER management. He went on to explain that I am very lucky, because with chronic pain, Demerol can do bag things. He said that they can cause seizures, but not the type where you fall on the floor and bite your tongue...he said it was the type where you fall on the floor and die. My parents and I had a wake up call to this. He then also told us that Demerol was invented by Hitler and his scientists. It was made to give to their soldiers for battle. It made them feel invincible. I nodded my head. See everyone knew I got ill on Demerol. It did make me mean, but in all honesty, it was like so much relief from a pain I thought would never go...that when people talked I got ill because I was so relieved I did not want to be bothered. So that was an interesting fact and story.
More listen listen and then looks straight at me "Is this interferring with the quality of your life?" *straight to the point* I was shocked....I told him "It says it on the papers" (see when I filled them out it came to a part where it asked what all parts it interferred on...almost everything was a 9 or 10...the pain is taking away Allison) I then started crying after I said that and said "YES! I'm tired of hurting...I'm in pain all the time" Mom then got a little emotional and said "I don't have the same Allison I had 9 months ago" That stabbed my heart when she said that. It hurt so deep. I know I'm not the same and that hurts because I will never be able to go back and change, I will never be able to say I'm Crohn's free. I will in heaven, but not here.
So after this, this is when I just felt so much peace from God. I was thinking this guy doesn't believe me...and then for 5 seconds Dr. Couch let his guard down and let a slight bit of emotion come through. "I can see it. I can see it in your eyes that you're tired, that you're in pain, that you're tired of being in pain, tired of hurting." For those 5 seconds I just wanted to fall to my knees and thank God. Here a man that studies and knows what pain is better than anyone else...could SEE...he COULD SEE! I wasn't crazy, I wasn't making it up, to all those people that said I wanted a high, to all those people that didn't believe me...it just allowed so much built up emotional pain release. Who cares if they didn't believe or know the truth...the man that knows it better than anyone KNEW and STILL DOES! THANK YOU LORD! THANK YOU FOR LETTING SOMEONE SEE MY INSIDE ON MY OUTSIDE! It's so hard having people tell you, oh you look so good. Yes I might, but oh the inside of me hurts so bad and feels so bad. (I am just bawling typing this, because its like a release of just so many emotions. Happy emotions, but bittersweet. I got help...for once I got help!)
Ok...calming down. So after this we went on to discuss treatment. We are stopping the Dilaudid and Darvocet. Here is what I will be on and what he gave me.
Fentanyl Patch 25 mg - He said that if by this weekend the 25 mg was not making the pain go away to go ahead and put another patch on making it 50 mg. Every 3 days I change the patch.
(copied from website - strong prescription pain medication for moderate to severe chronic pain that can provide long-lasting relief from persistent pain. Through its innovative patch technology, DURAGESIC® delivers fentanyl, an opioid pain medication, into the body slowly through the skin, where it works to relieve pain for up to 3 days (72 hours).DURAGESIC® is strong medicine for serious pain. The DURAGESIC® patch should only be used when other less potent medicines have not been effective and when pain needs to be controlled around the clock.)
Ultram 50 mg - 3-4 times a day
(copied this from a website for you all - Tramadol is a man-made (synthetic) analgesic (pain reliever). Its exact mechanism of action is unknown but similar morphine. Like morphine, tramadol binds to receptors in the brain (opioid receptors) that are important for transmitting the sensation of pain from throughout the body to.)
Zipsor 25 mg - can take up to 4 a day He really wanted this one because he said that it would be good for my Crohn's. You don't even have to digest. It is a gel and once it reaches the pH of your intestines...it bursts and is absorbed! How neat...but oh HOW EXPENSIVE!
(Also copied this - Zipsor liquid-filled capsules contain the nonsteroidal anti-inflammatory (NSAIDs) medicine diclofenac. This medicine works by reducing hormones that cause inflammation and pain in the body. Zipsor liquid-filled capsules are used to treat mild to moderate acute pain.)
Also. He is going to check with insurance first then set up an appointment. This is my 4th treatment for pain. They will take a needle and go in on both my left and right side of my lower lumbar and inject a medicine directly into the spinal nerves that control my abdomen. This medicine deadens the nerves and will give relief supposedly up to 2 months. If I like it...they can go in and deaden and burn the nerves.
Now. After he told me my four types of treatments. He said that the patch could be upped as we find what works. He then said if this system of treatment doesn't work...he said I don't tell most of my patients this, but after this THERE IS HOPE! I couldn't believe my ears. The next step after this IF this doesn't work...which I am very positive about it...we will go to a knew technology little bugger.
It is a pump planted under the skin. This pump releases medicine. What is special about it is that it is 1/100 of a dose you would take orally. This means that it is less toxic, less medicine, but more effective. See with morphine pumps they release the medicine directly into the bloodstream and it is given in full dosages. With this pump (it is called a CODMAN 3000) the catheter is placed in your intraspinal space. So that means it is directly going to your spinal which is fast relief and like I said less drug, but more effective. I'm going to copy and paste so you can read more. Anyways...he gave us a DVD and a pamphlet. He just said he wanted us to go ahead and be prepared and researched on it in case he wants to change to that therapy later. He said he has high hopes of this if our routine we have set up now doesn't seem to be controlling.
He then went on to talk about my abdoment pain and talked about pancreatic cancer patients and how they have the abdomen pain. So pretty much that is how he is treating me. Since I'm not showing wonderful signs of improvement with the Crohn's, we are going to make sure I am comfortable.
Here is what I copied about the CODMAN 3000 pump...you can research it if you like! :
Because life shouldn’t require batteries.
The CODMAN® 3000 drug pump is a proven implantable drug delivery system for the delivery of medications to treat chronic pain, severe spasticity, and cancers of the liver. This elegantly simple device features an inexhaustible power supply, and does not require the frequent replacement surgeries associated with battery-powered pumps.
FLEXTIP® Plus Intraspinal Catheter
The FLEXTIP® Plus catheter is used when the CODMAN 3000 drug pump is implanted for the delivery of medication to a patient’s intraspinal space, such as in the treatment of chronic pain or severe spasticity.
This durable catheter is differentiated from traditional silicone catheters by its innovative design, which includes a titanium-reinforced inner coil to resist kinking.
Key features include:
•19 Gauge catheter with outer polyurethane jacket
•Titanium-reinforced inner coil for maximum durability and kink-resistance
•Wide variety of anchors available
Also we are setting up MRI of spine just to make sure that the pain from my back is nothing but the Crohn's....just to make sure nothing else wrong besides that, since a lot of the joint pain is there. Now my joint pain includes my knees, hips (which pop out), back, neck....
After we finished there, mom and dad headed for home to fill prescriptions. Andrew and I went back to the hospital and stayed with Papa Bear and Mrs. Judy for a little while. Went to eat, got her something. Stayed again a little. Went to visit Mr. Walt (my bebop) and Mrs. Shirley. Got a phone call...the PRESCRIPTIONS WERE NOT SIGNED!!! I was so upset. We then figured that when Papa Bear was released they could go by and pick up rewritten prescriptions...they are listed on my papers (as future in laws) which means they are allowed access to all my records...access to if something happens. You know all that good stuff. so I was VERY thankful that I had listed them and that God had that aligned the way He did. See not just anyone can go and pick up prescriptions for you at a pain management...and truly you are supposed to have the pain patients drivers license. We had left a message however and the nurse said that if their name was on my paper that would suffice since it was their mistake! So they dropped my prescriptions to me at Gifts and Giggles and I placed the patch on at about 2 00 pm today.
Dr. Couch said it would take 10 - 12 hours to kick in so I had gone ahead and took 2 dilaudids this morning because I was hurting pretty bad. So I'm sitting at the store right now. I have a treatment tomorrow at the hospital. Mad about that because remember Dr. Rodriguez said he was raising chemo and cutting shorter...well got news that he isn't doing that and he never informed...ok calm down not getting into that! So I have a treatment tomorrow and we have about 60 soriety bags that have to be done and I didn't want Mrs. Becky having them all on her so I told her I would stay later tonight to get as much done since I will be out the rest of the week resting from the bittersweet treatment.
I love you all! Without your prayers yesterday, yesterday would not have gone as well as it did! Thank you for prayers for Papa Bear. He is safe at home right now and recovering every second! We are so thankful God watched over him and still continues to! Just yet again to all of you that sent up prayers...THANK YOU! I love you all! I am hoping that this is the start to ALLISON MARIE KELLY BEING PAIN FREE!!!!! I know it will take time for everything to build up in my system and for the pain to start truly being relieved but I am just so excited knowing that this is just the beginning!
Yet again I LOVE YOU ALL AND GOD BLESS!
Subscribe to:
Posts (Atom)