SimonMed called me this morning to reschedule my barium enema appointment because their imaging machine was not working. Thankfully, they called before I started taking laxatives for the prep. They wanted to reschedule for the end of this week, but with work, the charity event, and Taylor coming into town, I rescheduled it for Monday, July 31st instead.
A huge sense of relief came over me after I rescheduled my appointment. I could breathe a little deeper...until anxiety hit me again. My nerves are on edge. I have that weighted feeling in my chest and gut that won't go away. I think it's fear. I'm afraid my self diagnosis is correct. I'm terrified the solution is going to require surgery. I'm worried surgery/recovery is going to interfere with my running schedule. I just can't shake the feeling that I'm going to have to say goodbye to the good(ish) days far sooner than I had hoped. I am mentally preparing for the worst and it's freaking me out.
I've started rationalizing the idea that I could postpone surgery, if surgery is required, until January after all of my races. This would also give more time to reach my out of pocket max and I get five more sick PTO days at work at the beginning of the year. So far, my doctors don't seem to be in any hurry to figure this shit out. If they can take their sweet time in figuring out what's going on, it must not be that serious. By the time I get "answers", it's going to be mid August. I know it's naïve to think I am actually going to get answers. With chronic illness, most of the time I think the doctors are guessing just as much as I am.
Monday, July 24, 2017
Sunday, July 23, 2017
I Will Keep Going
The week I have ahead of me is daunting. Despite my intentions not to, I am stressing about my upcoming week. My sisters listen to a podcast and one of many phrases it's known for is "This is terrible. Keep going." Although I'm taking it out of the podcast's context, I am using the phrase as my motto for the week. There's no point in lying to myself about how shitty this week is likely to be. It's going to be a terrible week, but I am determined to keep going. I am not in the mood to see the bright side of things this week.
On Monday, July 24th, I will begin the preparation for my Barium Enema. The prep consists of a clear liquid diet, drinking two 10oz bottles of magnesium citrate, and taking two ducolax tablets. I will be leaving work around 2PM to go home and start the magnesium citrate and ducolax part of the prep.
On Tuesday, July 25th, my friend, Lynn, is picking me up in the morning and taking me to my Barium Enema. I am still thankful for how amazingly caring my new running friends are. I couldn't have hand picked a better group of people. This is the day I am most stressed about. Even though I won't get the results of this test until August 11th, I'm nervous because this test should be able to provide answers as to why feces are in my urine and why gas is passing through my urethra. I'm not a doctor, but in my opinion I think it's a fistula causing a problem and the solution is going to require surgery. During the Barium Enema, I may experience a feeling of fullness, moderate to severe cramping, the urge for a bowel movement, and general discomfort. Yes, I'm awake for the procedure. Now, you can understand why I didn't want to lie to myself about this week being terrible. Hopefully, afterwards I'll feel okay to go to work because I have a lot to get done there.
I don't really know how I will feel during the days following the Barium Enema, but life hasn't really provided me the time to rest. I will be working my ass off at work to make up time so that I can save my sick time in case I need to use it for surgery. I was invited to a prestigious Water for People, Everyone Forever charity event after work on Thursday. Their Mission: "Water For People exists to promote the development of high-quality drinking water and sanitation services, accessible to all, and sustained by strong communities, businesses, and governments." It's a great networking opportunity that I couldn't turn down. Literally, I felt obligated to go. If it was any other week, I would be excited. However, since it's this week, I just hope I feel well enough to enjoy it and take advantage of it. The company I work for is well known for its work in water/wastewater, so we donated generously to the Water for People mission at the same sponsorship level as OUC. My company hand selects a limited number of attendees from our company to represent us at the charity event and network with other like minded individuals in our community.
Taylor is coming into town the same night as the charity event. I am just way too stressed this week, so I gave up on trying to buffer between my mom and her. I am not going to be home when she arrives. I know it's hard on her when my mom is openly rude and unhospitable, but I just don't have the energy to shelter her from my mom. I should be more excited about Taylor's visit, but the other events of this week along with my mom are stressing me out. Don't take it personally if my mom doesn't like you, I know I don't take it personally. In fact, I would say I've grown accustomed to my mom not liking me. My mom is also unpredictable, so maybe she'll have an uncharacteristically nice day. My words of advice: avoid conflict, ignore ignorance, kill her with kindness even if its fake. I get to hang with Taylor after work on Friday and after my run on Saturday! I'm going to try to be good company and enjoy our time together. Although, at the moment my head is elsewhere.
On Monday, July 31st, I have an office appointment with my gastro, which I have a feeling will be a pointless appointment. My perspective of my gastro is that he is only good to write prescriptions, not to provide answers or care. I look forward to being disappointed and frustrated after this appointment because healthcare sucks.
On Monday, July 24th, I will begin the preparation for my Barium Enema. The prep consists of a clear liquid diet, drinking two 10oz bottles of magnesium citrate, and taking two ducolax tablets. I will be leaving work around 2PM to go home and start the magnesium citrate and ducolax part of the prep.
On Tuesday, July 25th, my friend, Lynn, is picking me up in the morning and taking me to my Barium Enema. I am still thankful for how amazingly caring my new running friends are. I couldn't have hand picked a better group of people. This is the day I am most stressed about. Even though I won't get the results of this test until August 11th, I'm nervous because this test should be able to provide answers as to why feces are in my urine and why gas is passing through my urethra. I'm not a doctor, but in my opinion I think it's a fistula causing a problem and the solution is going to require surgery. During the Barium Enema, I may experience a feeling of fullness, moderate to severe cramping, the urge for a bowel movement, and general discomfort. Yes, I'm awake for the procedure. Now, you can understand why I didn't want to lie to myself about this week being terrible. Hopefully, afterwards I'll feel okay to go to work because I have a lot to get done there.
I don't really know how I will feel during the days following the Barium Enema, but life hasn't really provided me the time to rest. I will be working my ass off at work to make up time so that I can save my sick time in case I need to use it for surgery. I was invited to a prestigious Water for People, Everyone Forever charity event after work on Thursday. Their Mission: "Water For People exists to promote the development of high-quality drinking water and sanitation services, accessible to all, and sustained by strong communities, businesses, and governments." It's a great networking opportunity that I couldn't turn down. Literally, I felt obligated to go. If it was any other week, I would be excited. However, since it's this week, I just hope I feel well enough to enjoy it and take advantage of it. The company I work for is well known for its work in water/wastewater, so we donated generously to the Water for People mission at the same sponsorship level as OUC. My company hand selects a limited number of attendees from our company to represent us at the charity event and network with other like minded individuals in our community.
Taylor is coming into town the same night as the charity event. I am just way too stressed this week, so I gave up on trying to buffer between my mom and her. I am not going to be home when she arrives. I know it's hard on her when my mom is openly rude and unhospitable, but I just don't have the energy to shelter her from my mom. I should be more excited about Taylor's visit, but the other events of this week along with my mom are stressing me out. Don't take it personally if my mom doesn't like you, I know I don't take it personally. In fact, I would say I've grown accustomed to my mom not liking me. My mom is also unpredictable, so maybe she'll have an uncharacteristically nice day. My words of advice: avoid conflict, ignore ignorance, kill her with kindness even if its fake. I get to hang with Taylor after work on Friday and after my run on Saturday! I'm going to try to be good company and enjoy our time together. Although, at the moment my head is elsewhere.
On Monday, July 31st, I have an office appointment with my gastro, which I have a feeling will be a pointless appointment. My perspective of my gastro is that he is only good to write prescriptions, not to provide answers or care. I look forward to being disappointed and frustrated after this appointment because healthcare sucks.
Thursday, July 20, 2017
Be Kind
Even though I have been through and continue to go through some pain in the ass shit, literally, I have taken a step back recently to count my blessings. People all around us are suffering and the truth is that we never really know what anyone is going through. When you're going through shit, don't you put on a brave face? Don't you post significantly more positive posts on social media than posts about real life struggles?
It's easy to be more absorbed in your own problems than in other people's issues. After all, you are the protagonist of your troubles. If you don't attend to your own conflicts in life, who will? Can anyone honestly understand what you're going through? This very notion should be the principle in which we empathize with others. Somehow the isolation of suffering is what can connect us to each other.
I'm sure you know the wish I would wish if I had one wish to wish: I wish the world would be freed from its suffering. Be kind; be the reason someone else believes there is good in this world.
It's easy to be more absorbed in your own problems than in other people's issues. After all, you are the protagonist of your troubles. If you don't attend to your own conflicts in life, who will? Can anyone honestly understand what you're going through? This very notion should be the principle in which we empathize with others. Somehow the isolation of suffering is what can connect us to each other.
I'm sure you know the wish I would wish if I had one wish to wish: I wish the world would be freed from its suffering. Be kind; be the reason someone else believes there is good in this world.
Tuesday, July 11, 2017
Health Care Sucks
Gastro:
My gastro is out of town for three weeks in July. I didn't really like my gastro before. Now, I'm just frustrated by how slow and unresponsive the office is. After I messaged my nurse about my symptoms, my appointment with my colorectal specialist, and requesting to schedule a colonoscopy, the scheduling department called me and made me schedule an office visit before they will schedule a colonoscopy. The first available office appointment was on Monday, July 31st. My gastro nurse never contacted me to check-up on me or to clarify my symptoms. From the office appointment, I guess I'll schedule a colonoscopy. Honestly, I don't even care about the colonoscopy anymore because I know that's not going to help with anything. In fact, I'm tempted to cancel the office appointment just so that I don't have to deal with their bullshit.
As a side note, I found out today from my Remicade nurse that Remicade will pay for tests twice a year to test my blood to measure how much medication is in my veins. This test usually costs around $2,700, so I've never done it. The test is beneficial because it would allow us to see if the reason for increased symptoms is because of a lower amount of medication in my system than what is recommended. If that's the case, we would raise the dose or decrease the infusion intervals. If I don't have any answers by my next infusion appointment, my nurse might order me to get the test.
Colorectal Specialist:
My specialist isn't the one that performs the barium enema, so I have to go to an outpatient center. The outpatient center couldn't get me in until Tuesday, July 25th. I believe the results of the barium enema will provide answers. Who am I kidding? There are never any clear answers when dealing with Crohn's disease. It should at least provide better answers than a colonoscopy would. I also scheduled a follow-up appointment with my colorectal specialist on Friday, August 11th to get the results of the barium enema.
Best case scenario, I am a month away from getting answers.
My gastro is out of town for three weeks in July. I didn't really like my gastro before. Now, I'm just frustrated by how slow and unresponsive the office is. After I messaged my nurse about my symptoms, my appointment with my colorectal specialist, and requesting to schedule a colonoscopy, the scheduling department called me and made me schedule an office visit before they will schedule a colonoscopy. The first available office appointment was on Monday, July 31st. My gastro nurse never contacted me to check-up on me or to clarify my symptoms. From the office appointment, I guess I'll schedule a colonoscopy. Honestly, I don't even care about the colonoscopy anymore because I know that's not going to help with anything. In fact, I'm tempted to cancel the office appointment just so that I don't have to deal with their bullshit.
As a side note, I found out today from my Remicade nurse that Remicade will pay for tests twice a year to test my blood to measure how much medication is in my veins. This test usually costs around $2,700, so I've never done it. The test is beneficial because it would allow us to see if the reason for increased symptoms is because of a lower amount of medication in my system than what is recommended. If that's the case, we would raise the dose or decrease the infusion intervals. If I don't have any answers by my next infusion appointment, my nurse might order me to get the test.
Colorectal Specialist:
My specialist isn't the one that performs the barium enema, so I have to go to an outpatient center. The outpatient center couldn't get me in until Tuesday, July 25th. I believe the results of the barium enema will provide answers. Who am I kidding? There are never any clear answers when dealing with Crohn's disease. It should at least provide better answers than a colonoscopy would. I also scheduled a follow-up appointment with my colorectal specialist on Friday, August 11th to get the results of the barium enema.
Best case scenario, I am a month away from getting answers.
Sunday, July 2, 2017
Crohn's is Back!
I have not been looking forward to writing this post. I kept postponing it in the hopes symptoms would cease. Crohn's is back! There we go, I said it. While my doctors never said I was in remission, I was doing extremely well and it certainly felt like Crohn's was in remission. For the past few weeks, I've been experiencing blood and mucus in my stool along with going to the bathroom more frequently. Occasional pain, but thankfully the pain has been manageable. Fatigue is showing its ugly head. Tiredness is haunting me. Running is hard.
The scariest part for me are the new symptoms I am also experiencing. I've been passing fecal matter in my urine and passing gas through my urethra. SOMETHING IS NOT RIGHT!!! What if the good days are over? I am going to be astonished if this does not require surgery.
I saw my colorectal specialist on Friday. Although I didn't get any answers, we did make a plan. I'm going to be scheduling a colonoscopy with my gastro so that we can take a better look at the active disease and then use the findings to discuss and re-evaluate medication options. I'm also going to be scheduling a barium enema with my colorectal specialist where we will use the contrast in the barium to see the structure of my large intestine on x-rays where we're looking for abnormalities like fistulas leading into my urethra.
A lot of my running friends have science backgrounds, so it's nice to get input from them. I have been very open about Crohn's with my new friends, which is liberating and terrifying at the same time. My friends, new and old, have been amazingly supportive and understanding. I am beyond grateful for the people in my life that care about me and motivate me to seek answers. A newer friend offered to go with me to appointments and I think I'm going to take her up on it once I schedule my colonoscopy and barium enema. Someone thought I had lost 15 lbs. in the past two weeks. Even though I haven't been weighing myself regularly, I think I've only lost 5 - 7 lbs. and I don't think it's that obvious I have lost weight.
I'll keep you posted...
The scariest part for me are the new symptoms I am also experiencing. I've been passing fecal matter in my urine and passing gas through my urethra. SOMETHING IS NOT RIGHT!!! What if the good days are over? I am going to be astonished if this does not require surgery.
I saw my colorectal specialist on Friday. Although I didn't get any answers, we did make a plan. I'm going to be scheduling a colonoscopy with my gastro so that we can take a better look at the active disease and then use the findings to discuss and re-evaluate medication options. I'm also going to be scheduling a barium enema with my colorectal specialist where we will use the contrast in the barium to see the structure of my large intestine on x-rays where we're looking for abnormalities like fistulas leading into my urethra.
A lot of my running friends have science backgrounds, so it's nice to get input from them. I have been very open about Crohn's with my new friends, which is liberating and terrifying at the same time. My friends, new and old, have been amazingly supportive and understanding. I am beyond grateful for the people in my life that care about me and motivate me to seek answers. A newer friend offered to go with me to appointments and I think I'm going to take her up on it once I schedule my colonoscopy and barium enema. Someone thought I had lost 15 lbs. in the past two weeks. Even though I haven't been weighing myself regularly, I think I've only lost 5 - 7 lbs. and I don't think it's that obvious I have lost weight.
I'll keep you posted...
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