Please, excuse my arrogance. I often wonder how awesome I would be if I didn't have a chronic disease. Positive self thoughts have not been coming easily to me lately, but yesterday I feel like I had a break though. I crossed the finish line of the Space Coast Half Marathon yesterday! It was also my third year in row of crossing the Space Coast finish line, so I qualified as a Milky Way Challenge finisher and received another super cool medal. If you've ran any kind of distance, you know it takes as much mental strength as it does physical strength. It took me 3 hours and 42 minutes, which was exactly a 17 minute per mile pace. I can't even be upset that it was my worst half marathon I've ever completed time wise.
Kim and I did 10 and 30 intervals with the 3 hour and 30 minute pacer, where we ran for 10 seconds and walked for 30 seconds at a time, until mile 9. I know the intervals seem ridiculously easy, but after 9 miles I couldn't keep up. My legs were on fire, my back hurt, my feet were screaming at me, and my arms were in discomfort, too. Yes, it took me 9 miles to hit "the wall." I was expecting to hit the wall much sooner, but I think keeping a slow and steady pace from the start helped to lengthen the distance to the wall. Kim told me, "You can do it. You're doing great." My reply was, "I know." The truth is walking those last four miles seemed killer, but I didn't once think about quitting. After all I know pain and the pain I experienced on the course was minor compared to the pain I had after the MRI. I knew I just had to keep putting one foot in front of the other.
Once we passed mile 12 I asked Kim if we could run a little to make it to the finish line under 3 hours and 45 minutes. She said, "What's the point? We're already sucking." I know my race wasn't pretty, but ouch. We didn't run until we saw the finish line in sight, but we did pick up our walking pace for the last mile. I'm thankful Kim sacrificed her race to stay with me because I don't think I would have done as well without her. After the race, I apologized for sucking. Even though I was elated that I finished and somehow in my twisted head I felt like a badass for crossing that finish line!
Kim was my support while others told me, "You have no business doing that race." La de da, whatever... I needed to cross that finish line! Strangely, I feel like it gave me a positive boost to my mentality. Although I'm still doing the post half marathon shuffle, once the soreness has gone away I think I may try to start running again. After all, running is a great anti-depressant.
Side note: I'm still constipated, but my belly hasn't started hurting yet.
Monday, November 30, 2015
Saturday, November 28, 2015
Falling Baby Dolls
I walked 2.5 miles with my Team Challenge peeps this morning for the Turkey Trot. We kept a 17 minute pace, which felt like a super fast walk to me. Kim even went with me to "evaluate" if I should be doing the half marathon tomorrow. I was surprised how well I felt. I didn't struggle to breathe and my legs felt stronger than I expected. Kim and my Team Challenge peeps agree that I should at least walk the half marathon tomorrow since there is a 7 hour time limit for the course. This makes me happy because after picking up my race packet yesterday, the pre-race excitement is running through my veins.
Of course, there's a catch. I'm constipated. I haven't pooped since Wednesday. I took laxatives on Thursday and Friday, but I still haven't pooped. I won't be taking any laxatives today because I don't want them to start working during the race. I just hope my stomach feels okay tomorrow. Two weeks ago I was pooping about every hour and now I can't even poop. This disease makes no sense. My bowel habits are almost always on my mind.
In other news, I remembered the dream I had last night. As much as I sleep I rarely remember my dreams, so this is exciting for me. Tons of naked baby dolls were falling from the ceiling and whoever collected the most in a minute won. I never saw anyone else trying to collect the baby dolls in my dream though. It was just me running around picking up as many naked dolls as I could. It hurt when the falling dolls fell on my head, so I was trying to avoid the falling dolls in the process. It was the longest minute ever... Super strange.
Of course, there's a catch. I'm constipated. I haven't pooped since Wednesday. I took laxatives on Thursday and Friday, but I still haven't pooped. I won't be taking any laxatives today because I don't want them to start working during the race. I just hope my stomach feels okay tomorrow. Two weeks ago I was pooping about every hour and now I can't even poop. This disease makes no sense. My bowel habits are almost always on my mind.
In other news, I remembered the dream I had last night. As much as I sleep I rarely remember my dreams, so this is exciting for me. Tons of naked baby dolls were falling from the ceiling and whoever collected the most in a minute won. I never saw anyone else trying to collect the baby dolls in my dream though. It was just me running around picking up as many naked dolls as I could. It hurt when the falling dolls fell on my head, so I was trying to avoid the falling dolls in the process. It was the longest minute ever... Super strange.
Sunday, November 22, 2015
I'm a Prisoner
I like to write and I like to rhyme. Especially, when I'm going through hard times. It helps me cope. Normally, I wouldn't post something like this, but I think this can help others understand what I've been through in the past week. I titled it: I'm a Prisoner.
My body is my antagonist. It attacks, it fights, and
it causes pain. My body is always full of shit. It’s an ass, it lies; it’s a
ball and chain. I’m a prisoner; stay over there and love me. I’m a patient;
come over here and hug me. I’m not myself; don’t hate me. I am myself; please
love me. I’m lying here crying on the bathroom floor with lots of pain I’m
trying to ignore. I’m fed up with being fucked up. When it comes to health, I
don’t have much luck.
Energy
My energy is still lacking, but I think it is slowly improving. I have signed up for the Team Challenge virtual Turkey Trot to benefit the Crohn's & Colitis Foundation of America. I'll be meeting up with Team Challenge peeps Saturday morning after Thanksgiving to get our trot on. I know I'm in no shape to run, so I plan to mostly walk. I haven't exercised in months and my low iron and hemoglobin levels make exercising seem harder than it should be. I'm signed up for the Space Coast Half Marathon on Sunday after Thanksgiving. I told everyone I'm not doing the race. When I told them, it was what they wanted to hear and I also had no intention, at the time, to do the race.
Well, I'm starting to feel slightly better and I've started to consider doing the race. In fact, I'm doing the Turkey Trot with Team Challenge to test the waters to see if I think I could do Space Coast. I really want to do the race, but I don't know if my body is in agreement. My body tends to be my biggest antagonist. I've done half marathons before without training. This is a little different because I'm not quite as healthy as I usually am. I don't know if I should start the race without knowing I'll definitely finish, or if I should only start the race if I know for sure I'll finish. Shouldn't I try? Isn't it better to have tried and failed than to have never tried at all? If I decide to do the race, I know it won't be easy. I can't say for certain that I'm mentally strong enough to fight through the inevitable walls that I would hit. I feel like I need to taste the victory of the finish line even if it will likely be my worst half marathon to date. That sweet taste of victory might be enough to motivate me to make it across the finish line.
Well, I'm starting to feel slightly better and I've started to consider doing the race. In fact, I'm doing the Turkey Trot with Team Challenge to test the waters to see if I think I could do Space Coast. I really want to do the race, but I don't know if my body is in agreement. My body tends to be my biggest antagonist. I've done half marathons before without training. This is a little different because I'm not quite as healthy as I usually am. I don't know if I should start the race without knowing I'll definitely finish, or if I should only start the race if I know for sure I'll finish. Shouldn't I try? Isn't it better to have tried and failed than to have never tried at all? If I decide to do the race, I know it won't be easy. I can't say for certain that I'm mentally strong enough to fight through the inevitable walls that I would hit. I feel like I need to taste the victory of the finish line even if it will likely be my worst half marathon to date. That sweet taste of victory might be enough to motivate me to make it across the finish line.
Saturday, November 21, 2015
After the MRI...
After the MRI on Friday, November 13th, it didn't take long for me to start feeling negative side effects from the three bottles of barium I drank as prep. My stomach turned to knots of pain and I found myself rushing to the bathroom every hour or two. I desperately wanted to sleep, but it seemed just as I cried myself to sleep I would get another urgent urge to go to the bathroom again. The urges felt like I had to pee, and even though I peed every time I went I also pooped black diarrhea every time, too. This went on Friday, Saturday, and even Sunday. I did not rest well. I lost eight pounds. I'm sure I was dehydrated. In the middle of the night, when everyone was in bed, I found myself sleeping on the bathroom floor to make for a shorter trip the next time the urge struck. One night, my dad slept in my bed so that I could sleep in my parents' bed with my mom close to their bathroom. My groans from being in pain woke my mom up a few times in the middle of the night, but she was a trooper. I felt physically and mentally fucked up, yet I'm still convinced the MRI was better than a colonoscopy.
I messaged my doctor to let him know how horribly I had been doing since the MRI and he let me know that it was typical for the barium to worsen symptoms, but that it should only last for a few days. Well, that would have been nice to know before I went into the MRI. It also makes me question the results of the MRI. Did the barium cause for bad or worse results?
I almost called in sick to work, but I hated to waste a sick day. I want to save my sick days for hospital visits if it has to come to that. Thankfully, I started feeling better on Monday. Yes, I was still experiencing pain, but I was experiencing less trips to the bathroom. My doctor called right at 5pm as I was signing off my computer at work, so I answered it even though my supervisor Kim was right in the office next to me. I would have walked into the stair well for privacy, but I didn't want my phone to drop the call. My doc asked about how my visit with my colorectal went, so I told him, "It was too tight to do the sigmoidoscopy, so she just flexed it with her finger and I go back in three months." Geez, I can't imagine what my supervisor is thinking of this conversation. My doc then went on to give me my MRI results: There is swelling in my small bowel, a possible fistula, and I was constipated during the MRI. Obviously, this means there is active disease, which makes us question if the medication, Cimzia, is working. My doc gave me two options: bump the dose of Cimzia to every three weeks instead of every four or switch to Humira or Remicade. I decided that I want to be sure Cimzia is not working before I switch to a different biologic, so I chose to bump the dose. I'll get lab work done in a few months to see if my inflammation levels have gone down and that's how we are going to tell if Cimzia is still working or not.
I was crying during my drive home from work, which has been happening more often than I care to admit lately. I had my car read me my messages for the day and Brittany came to my rescue again to turn my day around. Her and her family got me a get well gift, so I called her to thank her and filled her in about the results. I don't know how she does it, but she should write a book on how to be a friend to someone with a chronic illness because she is an absolute beast at it. She rocks my world when it needs rocking. Thank you, Brittany, for being an angel disguised as my friend. I know we don't talk that much, but I hope you know your heart is amazing and I love you!
I made it to work for the rest of the week, but I have been unfathomably exhausted. I did my Cimzia injections on Thursday, November 19th. Throughout the week I experienced occasional stomach pain. Mainly after a BM, but sometimes the pain just hit like a Mack Truck. I've been going to the bathroom more often than I'd like, but I've had worse so I'm happy it's not worse. Sleep has been difficult because I'm either waking up to go to the bathroom every few hours or I'm awake because I can't sleep through the pain.
I was supposed to visit Taylor this weekend, but I cancelled on her to stay home and recover from the week I've had. I promise it wasn't to stay home to binge watch House of Cards on Netflix. Thankfully, she understands I'm not always a flake. She's been a great ear for me to vent to. I don't complain verbally, out loud, but she is one person that will listen and I won't feel guilty when I need to get it off my chest. I know I complain on this blog (even though I think I'm just explaining the facts of what I'm going through mostly), but I think that's different. The minute you don't want to read it you can close my page, but mentally it helps me to let it out sometimes. She encourages me to call her at 3am when I'm in pain and can't sleep. Thank you, Taylor, for always being there to listen about my crazy shit. Thanks for always checking in and sending me funny memes. My love for you runs deeper than the sewers. I love you, Stinkbrain!
I even had to turn down an offer to go to the Gator game. It was the right decision because I feel like the rest I got today did me well. I've only had pain once today and I've only been going to the bathroom about every three to four hours, so I'm super happy I seem to be on the right track. I have more to say, but I'll blog again tomorrow since this post is already long
I messaged my doctor to let him know how horribly I had been doing since the MRI and he let me know that it was typical for the barium to worsen symptoms, but that it should only last for a few days. Well, that would have been nice to know before I went into the MRI. It also makes me question the results of the MRI. Did the barium cause for bad or worse results?
I almost called in sick to work, but I hated to waste a sick day. I want to save my sick days for hospital visits if it has to come to that. Thankfully, I started feeling better on Monday. Yes, I was still experiencing pain, but I was experiencing less trips to the bathroom. My doctor called right at 5pm as I was signing off my computer at work, so I answered it even though my supervisor Kim was right in the office next to me. I would have walked into the stair well for privacy, but I didn't want my phone to drop the call. My doc asked about how my visit with my colorectal went, so I told him, "It was too tight to do the sigmoidoscopy, so she just flexed it with her finger and I go back in three months." Geez, I can't imagine what my supervisor is thinking of this conversation. My doc then went on to give me my MRI results: There is swelling in my small bowel, a possible fistula, and I was constipated during the MRI. Obviously, this means there is active disease, which makes us question if the medication, Cimzia, is working. My doc gave me two options: bump the dose of Cimzia to every three weeks instead of every four or switch to Humira or Remicade. I decided that I want to be sure Cimzia is not working before I switch to a different biologic, so I chose to bump the dose. I'll get lab work done in a few months to see if my inflammation levels have gone down and that's how we are going to tell if Cimzia is still working or not.
I was crying during my drive home from work, which has been happening more often than I care to admit lately. I had my car read me my messages for the day and Brittany came to my rescue again to turn my day around. Her and her family got me a get well gift, so I called her to thank her and filled her in about the results. I don't know how she does it, but she should write a book on how to be a friend to someone with a chronic illness because she is an absolute beast at it. She rocks my world when it needs rocking. Thank you, Brittany, for being an angel disguised as my friend. I know we don't talk that much, but I hope you know your heart is amazing and I love you!
I made it to work for the rest of the week, but I have been unfathomably exhausted. I did my Cimzia injections on Thursday, November 19th. Throughout the week I experienced occasional stomach pain. Mainly after a BM, but sometimes the pain just hit like a Mack Truck. I've been going to the bathroom more often than I'd like, but I've had worse so I'm happy it's not worse. Sleep has been difficult because I'm either waking up to go to the bathroom every few hours or I'm awake because I can't sleep through the pain.
I was supposed to visit Taylor this weekend, but I cancelled on her to stay home and recover from the week I've had. I promise it wasn't to stay home to binge watch House of Cards on Netflix. Thankfully, she understands I'm not always a flake. She's been a great ear for me to vent to. I don't complain verbally, out loud, but she is one person that will listen and I won't feel guilty when I need to get it off my chest. I know I complain on this blog (even though I think I'm just explaining the facts of what I'm going through mostly), but I think that's different. The minute you don't want to read it you can close my page, but mentally it helps me to let it out sometimes. She encourages me to call her at 3am when I'm in pain and can't sleep. Thank you, Taylor, for always being there to listen about my crazy shit. Thanks for always checking in and sending me funny memes. My love for you runs deeper than the sewers. I love you, Stinkbrain!
I even had to turn down an offer to go to the Gator game. It was the right decision because I feel like the rest I got today did me well. I've only had pain once today and I've only been going to the bathroom about every three to four hours, so I'm super happy I seem to be on the right track. I have more to say, but I'll blog again tomorrow since this post is already long
Friday, November 20, 2015
The MRI
I know this post is super delayed, but I have been busy surviving.
Once I checked in at the imaging place on Friday morning, I had to drink three bottles of barium. It tasted like cold, chalky fake-grape liquid. Thankfully, it didn't make me gag and I was able to finish each bottle in the time limit I was given, 15 minutes for each bottle. By the time I was on my third bottle there were about 15 other people in the waiting room and I was the only one that had to drink the barium.
The nice MRI Tech, Lisa, called me back. On our walk to the room she said this is the most complicated MRI. She asked if I had anything metal on and I didn't, so I was able to wear my clothes. When we got to the room, she asked me to climb onto the table. She then had me lay down and slide to a certain point on the table. Lisa strapped some kind of foam thing with holes in it that was attached to the table over my abdomen. She tried for an IV in my right arm, but my vein collapsed. Thankfully, it didn't hurt or bruise. She was able to get the IV going in my left arm. Finally, she injected something that slowed my bowels down for 30 minutes. She let me know this injection is the reason we have to work fast through the breath holds and get started quickly. She gave me a "help-ball" to hold onto to squeeze if I needed anything. She left the room and my table began to slide into the MRI tube. Once in the tube I got a sudden urge to pee, so I squeezed the help-ball to tell Lisa. She was nice and came rushing in to unstrap me from the table, but told me to run and hurry because we are on a time crunch. I peed so much! Oh all the while I'm holding my IV up with one arm. How did all that liquid get inside me? I awkwardly washed my one hand and I went running back to the MRI room where Lisa quickly strapped me back in. Although I did peek a few times I was more comfortable keeping my eyes closed. The whole MRI was a series of breath holds. I would hear Lisa in my head phones, "Take a deep breath and hold your breath." Then a bunch of racket would go on for 30 seconds and I would hear Lisa say, "Breathe."
Toward the end with only three breath holds left I squeezed the help ball again because I really, really had to pee... again. Lisa told me through the head phones that we were almost done and there wasn't any time to let me out to pee. I wasn't even embarrassed when I peed myself a little during the next breath hold. I squeezed the help ball to tell Lisa and she told me it was okay. I mean it was kind of her fault because she didn't let me out after I warned her. After the MRI was over, she quickly came in the room to unstrap me from the table and to take out my IV. Lisa hinted that I might have some bladder issues going on. As soon as she said I was free to go I rushed to the bathroom. I peed and peed and just when I thought I was still peeing I realized I was also shitting very liquid diarrhea that sounded like peeing.
It's been a week since the MRI and I feel like I am still recovering from the MRI. This weekend, I'll blog about the after effects of that damn barium that I had to drink and the MRI results. You know the results aren't good when the doctor personally calls you to discuss them.
Once I checked in at the imaging place on Friday morning, I had to drink three bottles of barium. It tasted like cold, chalky fake-grape liquid. Thankfully, it didn't make me gag and I was able to finish each bottle in the time limit I was given, 15 minutes for each bottle. By the time I was on my third bottle there were about 15 other people in the waiting room and I was the only one that had to drink the barium.
The nice MRI Tech, Lisa, called me back. On our walk to the room she said this is the most complicated MRI. She asked if I had anything metal on and I didn't, so I was able to wear my clothes. When we got to the room, she asked me to climb onto the table. She then had me lay down and slide to a certain point on the table. Lisa strapped some kind of foam thing with holes in it that was attached to the table over my abdomen. She tried for an IV in my right arm, but my vein collapsed. Thankfully, it didn't hurt or bruise. She was able to get the IV going in my left arm. Finally, she injected something that slowed my bowels down for 30 minutes. She let me know this injection is the reason we have to work fast through the breath holds and get started quickly. She gave me a "help-ball" to hold onto to squeeze if I needed anything. She left the room and my table began to slide into the MRI tube. Once in the tube I got a sudden urge to pee, so I squeezed the help-ball to tell Lisa. She was nice and came rushing in to unstrap me from the table, but told me to run and hurry because we are on a time crunch. I peed so much! Oh all the while I'm holding my IV up with one arm. How did all that liquid get inside me? I awkwardly washed my one hand and I went running back to the MRI room where Lisa quickly strapped me back in. Although I did peek a few times I was more comfortable keeping my eyes closed. The whole MRI was a series of breath holds. I would hear Lisa in my head phones, "Take a deep breath and hold your breath." Then a bunch of racket would go on for 30 seconds and I would hear Lisa say, "Breathe."
Toward the end with only three breath holds left I squeezed the help ball again because I really, really had to pee... again. Lisa told me through the head phones that we were almost done and there wasn't any time to let me out to pee. I wasn't even embarrassed when I peed myself a little during the next breath hold. I squeezed the help ball to tell Lisa and she told me it was okay. I mean it was kind of her fault because she didn't let me out after I warned her. After the MRI was over, she quickly came in the room to unstrap me from the table and to take out my IV. Lisa hinted that I might have some bladder issues going on. As soon as she said I was free to go I rushed to the bathroom. I peed and peed and just when I thought I was still peeing I realized I was also shitting very liquid diarrhea that sounded like peeing.
It's been a week since the MRI and I feel like I am still recovering from the MRI. This weekend, I'll blog about the after effects of that damn barium that I had to drink and the MRI results. You know the results aren't good when the doctor personally calls you to discuss them.
Thursday, November 12, 2015
Yay for Today
I woke up around 11pm with a killer cramp in foot/toe. The pain was unreal. Tears were streaming down my face as I hopped out of bed to see if anyone was still awake. I saw the light on and I called for my mom. She must have heard it in my voice because she came running and helped me to the couch to prop my foot up. She gave me a yoga band to try to stretch out the cramp. The pain went away and then the pain came back several times. My mom woke my dad to come give his advice because he sometimes gets leg cramps. When the pain went away one time, my dad started to massage my foot and the pain never came back at that moment. He also gave me a potassium supplement that he takes. Yay for parents!
The killer foot/toe pain woke me up again around 3am. I knew no one else would be awake, so I just stayed in bed, cried, cringed, and moaned with the on and off pain. I tried massaging my own foot when the pain went away and it didn't work. The pain came back. I finally decided to stand up on my cramping foot when the pain went away and somehow that did the trick. I then walked to the kitchen and ate a banana. I haven't had a foot/toe cramp since. Yay me!
I've only been to the bathroom 4 times today and my BMs were kind of formed. I skipped lunch today and I had more energy after work than I have had in a while. Ya'll, not only did I take a shower, but I also shaved my legs and I'm still awake. Side note: I did eat dinner. Yay for energy!
The biggest and best surprise of the day came when my long time friend, Brittany, sent me a message. It said, "We care about you." Attached were two photos letting me know that she and her family donated to the Crohn's & Colitis Foundation of America. This made me cry the happiest of tears and it even made me smile. It made me feel so loved and cared about, which is exactly what I needed today. Shout out, Britt! Thank you!!!! She even calmed my nerves and gave me good advice for the MRI. I'm just going to try to relax and nap. We all know I'm good at that. I can sleep anywhere. Yay for amazing friends!
The killer foot/toe pain woke me up again around 3am. I knew no one else would be awake, so I just stayed in bed, cried, cringed, and moaned with the on and off pain. I tried massaging my own foot when the pain went away and it didn't work. The pain came back. I finally decided to stand up on my cramping foot when the pain went away and somehow that did the trick. I then walked to the kitchen and ate a banana. I haven't had a foot/toe cramp since. Yay me!
I've only been to the bathroom 4 times today and my BMs were kind of formed. I skipped lunch today and I had more energy after work than I have had in a while. Ya'll, not only did I take a shower, but I also shaved my legs and I'm still awake. Side note: I did eat dinner. Yay for energy!
The biggest and best surprise of the day came when my long time friend, Brittany, sent me a message. It said, "We care about you." Attached were two photos letting me know that she and her family donated to the Crohn's & Colitis Foundation of America. This made me cry the happiest of tears and it even made me smile. It made me feel so loved and cared about, which is exactly what I needed today. Shout out, Britt! Thank you!!!! She even calmed my nerves and gave me good advice for the MRI. I'm just going to try to relax and nap. We all know I'm good at that. I can sleep anywhere. Yay for amazing friends!
Wednesday, November 11, 2015
MRI Is Scheduled
I don't know how I've almost made it through this work week. I've already pooped 10 times today and the day isn't even over yet. Where is all this crap coming from? How can all of that shit be inside me? It's been mostly explosive diarrhea. My stomach has been sore. I get shortness of breath by just walking up stairs. I was shushed by my sister Kim when I was trying to tell her how I've been feeling. I've been harassed behind my back about my bathroom habits by my sister Leigha. Oh, and the last time I tried to have a conversation with my mom about me she seemed too busy on her phone and laptop to really listen and then later claimed that I walked out in the middle of our conversation. Yes, I did.
Then I see a FB post from a friend that says, "I'm quickly becoming extremely frustrated by this whole being sick thing. Enough is enough." I can't comment: Imagine if you had a chronic disease. This post should be mine. What have you been sick for a week? Sounds like a dream. Hey, to each their own.
I had every intention of going to the MRI by myself. I already had plans this Friday to go to Universal and IOA with Kelly. Since I scheduled my MRI for Friday morning Kelly will be taking me to the MRI. If I feel okay afterwards, we'll go and drink butter beer at Hogwarts. I have to arrive an hour before my appointment to drink 3 bottles of something. Yeah, I'm not looking forward to it, but it can't be worse than a colonoscopy prep, right? I told the scheduling lady that I'm not claustrophobic...we'll see if that's true. While I'm in the machine I'm sure it'll be like an out of body experience because there's no way I'd be brave enough to go in there. I'm trying not to be nervous about it because I think it's going to be a way better experience than a colonoscopy.
Then I see a FB post from a friend that says, "I'm quickly becoming extremely frustrated by this whole being sick thing. Enough is enough." I can't comment: Imagine if you had a chronic disease. This post should be mine. What have you been sick for a week? Sounds like a dream. Hey, to each their own.
I had every intention of going to the MRI by myself. I already had plans this Friday to go to Universal and IOA with Kelly. Since I scheduled my MRI for Friday morning Kelly will be taking me to the MRI. If I feel okay afterwards, we'll go and drink butter beer at Hogwarts. I have to arrive an hour before my appointment to drink 3 bottles of something. Yeah, I'm not looking forward to it, but it can't be worse than a colonoscopy prep, right? I told the scheduling lady that I'm not claustrophobic...we'll see if that's true. While I'm in the machine I'm sure it'll be like an out of body experience because there's no way I'd be brave enough to go in there. I'm trying not to be nervous about it because I think it's going to be a way better experience than a colonoscopy.
Sunday, November 8, 2015
My Stomach is on the Fritz
Since Friday evening I've slept for just about 24 hours. I was only up for a few hours yesterday. My first nap I took with three blankets on top of me and I didn't even break a sweat. At first I was freezing and then I was comfortable. My second nap wasn't planned. I started watching an episode of the Walking Dead and the next thing I know I was waking up three hours later.
I don't feel well. I could blame eating healthy. I could blame my period. I could blame the liquid multivitamin. I could blame the vitamin D. I could blame the vitamin C. I'm not blaming those things though. I am blaming the iron pills. I am taking iron for myself because I believe, in time, they will help me feel better. They better make me feel better because right now I feel like shit. My stomach has been on the fritz. It's been hurting. I can't trust farts. I've been having very explosive bowel movements. I've barely been able to get the bathroom fast enough. I'm experiencing down right nasty diarrhea. Some of my stool is black and some of it appears green... it's a side effect of the iron.
Can I just take one long nap and wake up feeling well?
I don't feel well. I could blame eating healthy. I could blame my period. I could blame the liquid multivitamin. I could blame the vitamin D. I could blame the vitamin C. I'm not blaming those things though. I am blaming the iron pills. I am taking iron for myself because I believe, in time, they will help me feel better. They better make me feel better because right now I feel like shit. My stomach has been on the fritz. It's been hurting. I can't trust farts. I've been having very explosive bowel movements. I've barely been able to get the bathroom fast enough. I'm experiencing down right nasty diarrhea. Some of my stool is black and some of it appears green... it's a side effect of the iron.
Can I just take one long nap and wake up feeling well?
Thursday, November 5, 2015
I'm the One That Doesn't Care
After reviewing my labs, my doctor thinks Crohn's may be active. He wants me to get an MRI or colonoscopy. The goal is to stop active inflammation before it leads to complications - strictures, abscess, fistulas. (Hey, I've had all of those before) I have opted for the MRI. Now, I just have to schedule it. Technically, I'm an adult; however, I had a tantrum in my room about my current health situation. I bawled my eyes out and pissed off some people. I don't mean to upset people. I felt so isolated and alone yesterday. Does anyone really get it?
It seems as though every damn time I have issues related to Crohn's that my mom blames me. Whether that blame is direct or indirect is beside the point. It's my fault because I don't do anything she says to "help" prevent things like this from happening. In my twisted head, when I hear her go off on tangents about what all I should be doing, all I think is that she doesn't get it. She doesn't care. It's not my fault. Chill out. It was brought to my attention that if she didn't care, she wouldn't be trying to "help". And I was told to never say mom doesn't care again. It's a tough pill to swallow, but I see that I was wrong. The truth is my mom cares... almost too much, but perhaps I need that. The truth is that I'm the one that doesn't care.
I'm skeptical eating better will help. I'm skeptical taking probiotics will help. I'm skeptical taking vitamin D will help. I am making changes anyway. I will start eating better. I will start taking probiotics. I will start taking vitamin D. I will do it for "them". I will do it to keep them quiet. If you have a cure, tell me and I'll add it to the list. I'll do it for you. Maybe one day I'll do it for me, but for now I think it's just going to be a waste of my time and money.
It's hard to take advice from someone who said, "inflammation is a sign of healing." I couldn't help, but laugh out loud when I heard that. Crohn's is the immune system attacking itself, which causes chronic inflammation in the GI tract. I don't believe the inflammation is a sign that I'm chronically "healing". That makes no sense!
I am suffocated by those who care and yet I feel alone because I don't think they get it. Heck, maybe I'm the one that doesn't get it.
It seems as though every damn time I have issues related to Crohn's that my mom blames me. Whether that blame is direct or indirect is beside the point. It's my fault because I don't do anything she says to "help" prevent things like this from happening. In my twisted head, when I hear her go off on tangents about what all I should be doing, all I think is that she doesn't get it. She doesn't care. It's not my fault. Chill out. It was brought to my attention that if she didn't care, she wouldn't be trying to "help". And I was told to never say mom doesn't care again. It's a tough pill to swallow, but I see that I was wrong. The truth is my mom cares... almost too much, but perhaps I need that. The truth is that I'm the one that doesn't care.
I'm skeptical eating better will help. I'm skeptical taking probiotics will help. I'm skeptical taking vitamin D will help. I am making changes anyway. I will start eating better. I will start taking probiotics. I will start taking vitamin D. I will do it for "them". I will do it to keep them quiet. If you have a cure, tell me and I'll add it to the list. I'll do it for you. Maybe one day I'll do it for me, but for now I think it's just going to be a waste of my time and money.
It's hard to take advice from someone who said, "inflammation is a sign of healing." I couldn't help, but laugh out loud when I heard that. Crohn's is the immune system attacking itself, which causes chronic inflammation in the GI tract. I don't believe the inflammation is a sign that I'm chronically "healing". That makes no sense!
I am suffocated by those who care and yet I feel alone because I don't think they get it. Heck, maybe I'm the one that doesn't get it.
Tuesday, November 3, 2015
Lab Results 10.30.15
I got my lab results back. Now, I just have to wait to hear back from my doctor about how much iron I should be taking and whether I should be doing anything else.
Test Name Value Reference Range
Iron, Serum 18 35 - 155 ug/DL
Iron Saturation 5 15 - 55 %
Hemoglobin 9.2 11.1 - 15.9 g/DL
C - Reactive Protein 11.7 0.0 - 4.9 mg/L
I highlighted what I think are the most important values that were out of range on my results. Yes, I read my own lab results. I needed some help from Kim and Google on some of them though.
As expected my iron and hemoglobin levels are nowhere near where they should be. I'm not sure how worried I should be about this because I know my levels have been this low before.
The C-Reactive Protein test is interesting because it measures general levels of inflammation in my body. Crohn's must be hard at work inflaming everything. I'm surprised I'm not having more issues.
Test Name Value Reference Range
Iron, Serum 18 35 - 155 ug/DL
Iron Saturation 5 15 - 55 %
Hemoglobin 9.2 11.1 - 15.9 g/DL
C - Reactive Protein 11.7 0.0 - 4.9 mg/L
I highlighted what I think are the most important values that were out of range on my results. Yes, I read my own lab results. I needed some help from Kim and Google on some of them though.
As expected my iron and hemoglobin levels are nowhere near where they should be. I'm not sure how worried I should be about this because I know my levels have been this low before.
The C-Reactive Protein test is interesting because it measures general levels of inflammation in my body. Crohn's must be hard at work inflaming everything. I'm surprised I'm not having more issues.
Sunday, November 1, 2015
Visits with My Gastro and Colorectal Specialist
My gastroenterologist visit on Thursday went well. I weighed in at 148lbs, which made me super happy! I've come a long way since December/January. The doc quizzed me about my bowel movements, which I had no real complaints about. I'm been pooping without pain, I typically have been going about 4 times a day, and the stool has been formed. He then asked about my stricture. The thing about my stricture is that the only reasons I know I have it are because my stool is super thin and because they tell me it's something we need to keep an eye on. In my experience, I have learned that I cannot accurately tell you "how my stricture is doing" because I do not put my finger or anything else up my ass to see how tight the stricture is and I'm not good at observing my stool getting thinner over time. I only feel it when my colon and rectal specialist uses her finger to loosen the stricture. Anyways, I told my gastro that I didn't think the stricture had gotten any worse. He said I looked healthy, but went on to say, "Since you have a history of severe Crohn's disease we need to make sure you are seeing Dr. M. regularly." Dr. M. is my colon and rectal specialist. My gastro only looks at my ass if I have a colonoscopy, so he sends me to Dr. M. for regular ass observation. I really only use my gastro to get prescriptions even though Dr. M. has given me prescriptions in the past. I talked with my gastro about my lack of energy and possible depression and he ordered me to get some lab work done to see if I'm anemic. He thinks that's most likely wants causing the lack of energy and even plays a role in leading to depression. I'll likely have to start taking iron pills or get an iron infusion to help with the anemia.
My colon and rectal specialist visit on Friday was pretty much a visit from Hell. Again, I weighed in at 148lbs. It had been a year since my last visit and I'm supposed to be going every 3 months. Every visit the doc loosens my stricture with her finger and sure it's uncomfortable, but I would never have described it as painful before. Well, this time I was in so much pain as she was loosening it that I had to have her stop. Then I had decide if she was going to try again or if I wanted anesthesia. Of course, I wanted anesthesia, but that's expensive so I held my breath and told her to try again. The pain I felt can't be put into words. My mom was in the room and it almost brought her to tears for her to see me in so much pain. My doc was able to loosen it, but she said that she wasn't going to use the scope because that would likely hurt and certainly make me sore the next day. She lectured me about seeing her every 3 months because my rectum is in "bad shape." That scares me. In the back of mind, I know I'll likely be pooping in a bag at some point in my life and as much as I joke about it I really don't want that to happen. Hopefully, when I go back in 3 months, my rectum will be big enough for the scope so we can see what the disease is doing.
If I was a good patient, I would research the heck out Crohn's and strictures, but I can't bring myself to do it. The few times I have tried to find information I soon stopped because I don't want those other patients' stories to be my future. My Crohn's isn't that bad, right? I'm sure that makes me an idiot because that also means that I'm solely in the hands of my doctors with no real opinion on what to do about my condition of my own. Perhaps I should care more, but I don't... I can't. That absolutely makes me a guinea pig because I just do whatever my doctors tell me to do most of the time. I had a friend ask me if "they are blowing [...the stricture] up with a balloon?" I might get around to looking up what that means one day, but at the moment I'm content not knowing. I'm in chronic denial.
My colon and rectal specialist visit on Friday was pretty much a visit from Hell. Again, I weighed in at 148lbs. It had been a year since my last visit and I'm supposed to be going every 3 months. Every visit the doc loosens my stricture with her finger and sure it's uncomfortable, but I would never have described it as painful before. Well, this time I was in so much pain as she was loosening it that I had to have her stop. Then I had decide if she was going to try again or if I wanted anesthesia. Of course, I wanted anesthesia, but that's expensive so I held my breath and told her to try again. The pain I felt can't be put into words. My mom was in the room and it almost brought her to tears for her to see me in so much pain. My doc was able to loosen it, but she said that she wasn't going to use the scope because that would likely hurt and certainly make me sore the next day. She lectured me about seeing her every 3 months because my rectum is in "bad shape." That scares me. In the back of mind, I know I'll likely be pooping in a bag at some point in my life and as much as I joke about it I really don't want that to happen. Hopefully, when I go back in 3 months, my rectum will be big enough for the scope so we can see what the disease is doing.
If I was a good patient, I would research the heck out Crohn's and strictures, but I can't bring myself to do it. The few times I have tried to find information I soon stopped because I don't want those other patients' stories to be my future. My Crohn's isn't that bad, right? I'm sure that makes me an idiot because that also means that I'm solely in the hands of my doctors with no real opinion on what to do about my condition of my own. Perhaps I should care more, but I don't... I can't. That absolutely makes me a guinea pig because I just do whatever my doctors tell me to do most of the time. I had a friend ask me if "they are blowing [...the stricture] up with a balloon?" I might get around to looking up what that means one day, but at the moment I'm content not knowing. I'm in chronic denial.
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