IBD Awareness week ends tonight and here's my lousy attempt at telling you a few things that I wish more folks understood about me and Crohn's disease.
Tasks that seem easy to you may take all my energy to complete and/or leave me sore for days. I try hard to maintain normalcy, but sometimes I can't keep up. Examples: Showering, doing my hair, doing my makeup, looking alive/normal, doing laundry, cooking, washing dishes, and walking up stairs.
It's more than a physical disease. It fucks me up mentally, too. Don't be mad when I don't remember things, when I have a poor/dark/negative outlook, or when I have low self esteem. If I could flip a switch to change it, I would. I wouldn't choose to be this way.
Unless if I ask for it, I do not want your advice. If you give me unsolicited advice, please don't keep drowning me with your opinions. You're not helping. Say your peace and move on. I heard you the first time.
Breaking news: I have been considering finding a counselor. I promise, I'm not just doing this to find another couch to nap on. I've just been getting other people's opinions at this point before I start looking for one and figuring out if this is something I want to do. I don't think I'm coping as well as I used to with Crohn's. I've become too emotional and I feel weighted down by the burden of this disease. I have lost my ambition. I would love to learn to better cope with it. I feel no shame in considering seeking professional help. I have some supporters. I also have some that feel that me seeing a counselor indicates that our relationship is failing and I could use relationships in place of therapy by talking more openly about what's on my mind. That whole opening up thing...yeah, I'm not very good at that because of the fear of judgment and more opinions that I probably don't want to hear. So, what are your thoughts on this topic? Yay or nay? Positives and negatives? Should I keep considering it?
Monday, December 7, 2015
Sunday, December 6, 2015
Busy Week Ahead
After I stopped taking my iron supplements last week, I started taking multiple double doses of Senokot laxative tablets. It seemed like it took forever for it to work... it took at least 5 days. I finally had a bowel movement on Friday. I've had a few more since then, but I want more! I was constipated for almost a week and half, but because my belly was so empty prior to becoming constipated it didn't get too sore, thankfully. Once I feel like my bowels have become regular I'll start taking the iron again. Whatever regular means these days...
This week is going to be a super busy week. I'll likely be working overtime on Monday, Tuesday, and Wednesday because its accounting's close week for the month of November and because we have two payroll runs this week. My supervisor and I will be busting our butts in payroll during normal hours and staying late to help accounting for close. On Friday, I'm scheduled for a vacation day. On my day off, I'm going to go to Universal and IOA with Kelly. I'm just hoping that I feel well enough when the time comes and that I'll have the energy to last all day. I know I can push through a half marathon, but my will power is not the same when it comes to theme parks.
This week is going to be a super busy week. I'll likely be working overtime on Monday, Tuesday, and Wednesday because its accounting's close week for the month of November and because we have two payroll runs this week. My supervisor and I will be busting our butts in payroll during normal hours and staying late to help accounting for close. On Friday, I'm scheduled for a vacation day. On my day off, I'm going to go to Universal and IOA with Kelly. I'm just hoping that I feel well enough when the time comes and that I'll have the energy to last all day. I know I can push through a half marathon, but my will power is not the same when it comes to theme parks.
Monday, November 30, 2015
La De Da
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.
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.
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
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