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!
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