This post is about chronic conditions from my perspective. I know one person who was recently diagnosed with a chronic condition and another person who may soon be diagnosed with a chronic condition, so this topic seems really relevant to me. (One of them might read this, the other one will not read this unless I copy and paste this into an e-mail.) As you probably know I've been dealing with a chronic condition since I was 15 years old. Now, I understand I have a different condition from these two people and they have a different condition from each other; however, I think it's important to recognize possible similarities to be better equipped to support one another.
I remember the scariest thing I learned was the fact that there is no cure. I'm not trying to scare you, I'm just trying to be real to let others know about this aspect of a chronic diagnosis. There isn't a magical pill to fix this. Surgery will not make this permanently go away. Let that sink in for a second. I recently filled out FMLA paperwork and my condition was described by my healthcare professional as "lifelong". The prospect of having to manage this for a lifetime can be intimidating.
I want to reassure you that this diagnosis was not your fault. Even though the world wants you to keep your shit together, it's okay to fall apart sometimes. Cry, scream, curse if you must because it's far better to let it out than to hold it inside. You are strong regardless of the tears staining your cheeks. You may be pressured to hide the bad and ugly aspects. I encourage you to seek a family member, a friend, or even a counselor you can talk to without being judged and without being forced to hide what you're truly feeling. I think others mean well when they advise us to be positive. Would they really be positive in your shoes though? I give you permission to air out your negative feelings. In my experience, if suppressed, negative feelings can fester into depression even if you're faking positivity. You will encounter folks that believe dietary changes will be the solution to your problem, but I want to warn you not to get your hopes up. My ex-boyfriend's sister's goldfish had this same condition and cured it by XYZ. I'm saying be cautious. Ugly cry, write about it, and tell your story because heroes fight different battles. You're a hero and this is your battle! Don't give up, FIGHT!
Sunday, July 24, 2016
Wednesday, July 13, 2016
One Mile at a Time
Prior to this past Saturday, I was keeping up perfectly with my training schedule... and then Saturday's run happened. I was scheduled to run 12 miles, but I quit after a measly 9 miles. The run started unbelievably hot at 5am. It was 85 degrees at the start and that's without calculating in the humidity and feel like temperature. Unfortunately, the sad reality of training for a marathon during the middle of summer in Florida is that the only chance we have for cooler, bearable temperatures is if it rains. Not only was the weather miserable, but my body was also kind of miserable still recovering from the shitty week of stomach pain. During the run I started to experience some stomach pain around mile 4. I was able to run through the pain for the most part though. I think what did me in were the cramps in my legs around mile 8.5. I'm not sure if the cramps were from dehydration or what, but my body was pretty much screaming at me to STOP, so I quit! Anyways, I've got plenty of excuses and I feel like a huge wimp and slacker for deciding to throw in the towel at mile 9.
Now, I find myself behind on training. I'm bummed about it because I've been working so hard to stay on track and one run just completely put me off my target mileage. I'm scheduled to run 14 miles this Saturday, but I know realistically that's not going to happen. Technically, my longest run this season has been 10.5 miles, so 14 miles would be too big of a jump. My new goal for Saturday is to run 12 miles. I seem to be hitting the proverbial wall at mile 9 or 10. I have to dig deep and keep pushing myself in order to reach my goals.
Sometimes I forget that running is hard. Not only that, but it's easy to forget that training for a marathon is difficult, too. Yeah, okay, I should know better; however, I still catch myself thinking that crossing the finish line in November is guaranteed. In distance running, the miles demand respect. With less than four months away from race day, I need to embrace the doubt dancing around in my thoughts (that I've been ignoring) because I need that doubt to motivate me to keep training hard.
I consider myself a very self motivated person. Most of you know that I didn't tell my mom when I entered the NYC Marathon lottery because I didn't think she would approve of my decision to do it and I didn't want to hear her bitch about my bad life choices. Well, when I told her I won the lottery into the race, she left me feeling judged and underestimated. Ever since my DNF (did not finish) at the Disney Marathon in 2013, in her eyes my running ability is tainted because of Crohn's even though I finished the Dopey Challenge strong the following year in 2014. Earlier this week my mom complimented me on how hard I've been training and offered to buy me a Garmin watch to help track my stats. She verbally recognized that this race is a big deal and also offered to buy a picture package if they offer one for professional course race pictures because she knows how much this race means to me. I'm overwhelmed and shocked by her sudden support. In fact, it made me cry. You know, no pressure or anything, but I really don't want to fuck up crossing the finish line. Strangely enough, I want to make her proud. Here's to getting back on track one mile at a time.
Now, I find myself behind on training. I'm bummed about it because I've been working so hard to stay on track and one run just completely put me off my target mileage. I'm scheduled to run 14 miles this Saturday, but I know realistically that's not going to happen. Technically, my longest run this season has been 10.5 miles, so 14 miles would be too big of a jump. My new goal for Saturday is to run 12 miles. I seem to be hitting the proverbial wall at mile 9 or 10. I have to dig deep and keep pushing myself in order to reach my goals.
Sometimes I forget that running is hard. Not only that, but it's easy to forget that training for a marathon is difficult, too. Yeah, okay, I should know better; however, I still catch myself thinking that crossing the finish line in November is guaranteed. In distance running, the miles demand respect. With less than four months away from race day, I need to embrace the doubt dancing around in my thoughts (that I've been ignoring) because I need that doubt to motivate me to keep training hard.
I consider myself a very self motivated person. Most of you know that I didn't tell my mom when I entered the NYC Marathon lottery because I didn't think she would approve of my decision to do it and I didn't want to hear her bitch about my bad life choices. Well, when I told her I won the lottery into the race, she left me feeling judged and underestimated. Ever since my DNF (did not finish) at the Disney Marathon in 2013, in her eyes my running ability is tainted because of Crohn's even though I finished the Dopey Challenge strong the following year in 2014. Earlier this week my mom complimented me on how hard I've been training and offered to buy me a Garmin watch to help track my stats. She verbally recognized that this race is a big deal and also offered to buy a picture package if they offer one for professional course race pictures because she knows how much this race means to me. I'm overwhelmed and shocked by her sudden support. In fact, it made me cry. You know, no pressure or anything, but I really don't want to fuck up crossing the finish line. Strangely enough, I want to make her proud. Here's to getting back on track one mile at a time.
Sunday, July 10, 2016
"Been in Pain Like Me" - Halsey
The last few weeks have been the worst I've felt health wise since starting Remicade. First constipation, and then stomach pain. Wednesday was the most wicked stomach pain I've had in recent memory. It was on and off throughout the day. I felt the pain hit me and then briefly subside only to return with what seemed like a stronger punch to the gut. At times, I had to remind myself to breathe. I know Kim could tell I was in discomfort at the Halsey concert, but I tried not to let it ruin the experience. It was kind of appropriate, really, being able to scream the lyrics with Halsey. Those same lyrics that helped me through other hard days like Wednesday. Halsey opened the show with her song 'Gasoline', so the first two lines couldn't have been more fitting: "Are you insane like me / Been in pain like me".
I'm definitely not a tough critic. I thought Halsey put on one hell of a great show, but it wasn't just her that made the show awesome. The arena was nearly sold out. The fans knew every fucking word to every fucking song. We, the fans, energized the arena by singing along with Halsey loud and proud. I've been to quite a few concerts, so believe me when I say that I've never felt the power of an audience like this before. I loved it when Halsey let the audience take the lead to a chorus while she took it all in with a smile and proceeded to sing back up vocals to us. She lived up to her badass image. She threw the word "fuck" in whenever she felt like it, which made the crowd scream in approval. She also used her powerful voice to create new and exciting riffs. After one song, she got a little choked up on raw emotion as she admitted that she had never played to a crowd this big before. She's a relatively new artist, but she didn't let any inexperience show. She owned the stage! It was a great escape from reality.
I'm definitely not a tough critic. I thought Halsey put on one hell of a great show, but it wasn't just her that made the show awesome. The arena was nearly sold out. The fans knew every fucking word to every fucking song. We, the fans, energized the arena by singing along with Halsey loud and proud. I've been to quite a few concerts, so believe me when I say that I've never felt the power of an audience like this before. I loved it when Halsey let the audience take the lead to a chorus while she took it all in with a smile and proceeded to sing back up vocals to us. She lived up to her badass image. She threw the word "fuck" in whenever she felt like it, which made the crowd scream in approval. She also used her powerful voice to create new and exciting riffs. After one song, she got a little choked up on raw emotion as she admitted that she had never played to a crowd this big before. She's a relatively new artist, but she didn't let any inexperience show. She owned the stage! It was a great escape from reality.
Tuesday, July 5, 2016
"These are the Badlands"
I'm totally pumped to see Halsey tomorrow night at the CFE Arena! Kim got me tickets for my birthday and I'm pretty excited about seeing her live. I clung to her Badlands album late last year into early this year as I was battling my own "badlands" during some shitty months of depression and Crohn's disease. Strangely enough I first liked her music because I related to her lyrics. I felt understood.
Waking up facing the same disease day in and day out allowed me to relate to the line in 'Gasoline' by Halsey that says, "You can't wake up, this is not a dream". I couldn't just snap out of it and get back to the reality I so desperately desired. The pain and lack of happiness had me living the line in 'Hold Me Down' by Halsey that says, "They [demons] fight me, vigorous and angry, watch them pounce". It seemed unrelenting. If I could have controlled it, I would have. Honestly, I felt helpless. All I could do was hold on while it took its toll on me. I found a much needed sense of hope in the line "I'm meaner than my demons" in the song 'Control' by Halsey. At times, Crohn's disease and/or depression made me feel isolated and I related to the lines in Halsey's song 'Empty Gold' that says, "I, I must confess / How hard I tried to breathe / Through the trees of loneliness". Right about the time I was overcoming depression, I started to catch myself thinking who am I without that weight? I don't know who I'm supposed to be. The line in Halsey's song 'Haunting' explains my crazy feelings well: "I'm begging you to keep haunting me" because I wasn't sure who I was without it. There's no doubt I lost a bit of myself during that period in my life. It was difficult to find the person I was prior to that struggle, but I think I have found myself again.
Now, I like Halsey's music because I appreciate the depth of her lyrics. Not only can she hit the notes (how would I know? I'm tone deaf), but she is very artistic in her delivery, sound, and beat. I like that she doesn't shy away from dark feelings. Life isn't all sunshine and roses and I can appreciate anyone willing to verbalize that.
"These are the Badlands": https://youtu.be/DWCOW7TaGQE
Waking up facing the same disease day in and day out allowed me to relate to the line in 'Gasoline' by Halsey that says, "You can't wake up, this is not a dream". I couldn't just snap out of it and get back to the reality I so desperately desired. The pain and lack of happiness had me living the line in 'Hold Me Down' by Halsey that says, "They [demons] fight me, vigorous and angry, watch them pounce". It seemed unrelenting. If I could have controlled it, I would have. Honestly, I felt helpless. All I could do was hold on while it took its toll on me. I found a much needed sense of hope in the line "I'm meaner than my demons" in the song 'Control' by Halsey. At times, Crohn's disease and/or depression made me feel isolated and I related to the lines in Halsey's song 'Empty Gold' that says, "I, I must confess / How hard I tried to breathe / Through the trees of loneliness". Right about the time I was overcoming depression, I started to catch myself thinking who am I without that weight? I don't know who I'm supposed to be. The line in Halsey's song 'Haunting' explains my crazy feelings well: "I'm begging you to keep haunting me" because I wasn't sure who I was without it. There's no doubt I lost a bit of myself during that period in my life. It was difficult to find the person I was prior to that struggle, but I think I have found myself again.
Now, I like Halsey's music because I appreciate the depth of her lyrics. Not only can she hit the notes (how would I know? I'm tone deaf), but she is very artistic in her delivery, sound, and beat. I like that she doesn't shy away from dark feelings. Life isn't all sunshine and roses and I can appreciate anyone willing to verbalize that.
"These are the Badlands": https://youtu.be/DWCOW7TaGQE
Monday, July 4, 2016
Communication Skills Or Lack Thereof
I admit that I am not the best communicator. I attribute this weakness to my upbringing and also to the society in which we live in. When I was growing up, most revelations of my thoughts and/or feelings were promptly suppressed by my parents. Now that I look back I recognize how unhealthy this was for my communication development. Being scolded when I expressed myself forced me to stop such expressions. If they weren't pleasant feeling, I better not give voice to them. For most of my life, I have been out of touch with my true thoughts and feelings. I'm still learning that feeing angry, depressed, or confused are just as valid as feeling open, happy, and good. Although I can more easily accept unpleasant feelings, I still struggle to find an audience that will listen appropriately.
A big part of communication is the act of listening. In recent years, I have improved my listening skills greatly. I'm guilty of giving unrequested advice when I should have just listened with compassion to show my understanding instead. It's probably no surprise that I'm actually on the receiving end of the unrequested advice more often than I care to admit. When I express to others that I'm struggling with Crohn's or having a bad day, they tend to jump right in with their unsolicited two cents even though what I need is "sympathetic listening". It's simple really... I just need to know I'm understood.
My parents are probably the worst communicators I know. My dad just does not communicate and mom's communication methods are ineffective and unhealthy to say the least. I'm preparing to have a difficult conversation with my mom about her communication skills. She will likely get pissed off no matter what I say, but someone has to bring her ineffective, unhealthy ways of communicating to her attention. I know this falls under unrequested advice, but I feel like if she listens sympathetically to what I have to say it will help everyone in the end. I intend to be gentle and not accusing while I offer suggestions of ways she can change her tone, delivery, and advise her to make requests, not demands when she needs a ride to run an errand since she isn't driving.
A big part of communication is the act of listening. In recent years, I have improved my listening skills greatly. I'm guilty of giving unrequested advice when I should have just listened with compassion to show my understanding instead. It's probably no surprise that I'm actually on the receiving end of the unrequested advice more often than I care to admit. When I express to others that I'm struggling with Crohn's or having a bad day, they tend to jump right in with their unsolicited two cents even though what I need is "sympathetic listening". It's simple really... I just need to know I'm understood.
My parents are probably the worst communicators I know. My dad just does not communicate and mom's communication methods are ineffective and unhealthy to say the least. I'm preparing to have a difficult conversation with my mom about her communication skills. She will likely get pissed off no matter what I say, but someone has to bring her ineffective, unhealthy ways of communicating to her attention. I know this falls under unrequested advice, but I feel like if she listens sympathetically to what I have to say it will help everyone in the end. I intend to be gentle and not accusing while I offer suggestions of ways she can change her tone, delivery, and advise her to make requests, not demands when she needs a ride to run an errand since she isn't driving.
After 9 Days Without Incident...
After 9 days without incident, I finally pooped today! What a huge relief! I was beginning to skip meals because the pressure in my stomach was too uncomfortable. Thankfully, with the long weekend I felt confident intentionally over dosing on laxatives because I would be at home in case of an "emergency". Desperate times call for desperate measures.
In other news, I've been having knee pain in my left knee. At first I noticed it after a few runs in the past weeks below my kneecap, but during my Saturday run I felt the pain during and after my run. According to WebMD, it's jumper's knee. That's a little weird considering I've been running, not jumping. However, I did use to experience this back in high school when I played basketball.
In other news, I've been having knee pain in my left knee. At first I noticed it after a few runs in the past weeks below my kneecap, but during my Saturday run I felt the pain during and after my run. According to WebMD, it's jumper's knee. That's a little weird considering I've been running, not jumping. However, I did use to experience this back in high school when I played basketball.
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