My default personality is a bright and bubbly person who sees the world in rose-colored glasses with rhinestone accents.
So spending much of my time physically unwell and emotionally low clashes with who I prefer to be.
I like being healthy and happy. I thrive as a healthy and happy person.
Being sick and sad just sucks.
Secondary Infections
Earlier this year, I shared my long saga of battling a staph infection and a yeast infection. Both appeared almost simultaneously, and the antibiotics to defeat the staph infection greatly worsened my yeast infection. More than 5 months later, I still have lingering eczema under my breasts from where the yeast infection started.
Regular bras irritate my skin further. I primarily layer tank tops to go braless, or wear sports bras, or wear my one bra with a too-big band on the loosest hook. What bras I can wear limit what clothing I can wear, leaving me with a closet full of cute clothes that I can’t wear right now.
And that’s just my problem from the side effects of my Crohn’s medications.
Fatigue, Pain, Vomiting, and Diarrhea
I’ve spent the last few months exhausted. If I don’t set an alarm, and Dan doesn’t wake me up, my body sleeps 11-12 hours on a regular basis. Then I’m still tired throughout the day.
Dan has started helping wake me up when he leaves for work around 6:30am. Sometimes I manage to get up. Other times I fall back asleep until my alarm goes off at 7:45am. Either way, I’m tired and groggy when I wake up. My energy remains low most of the day. But since I still feel that tired sleeping 11-12 hours at night, I might as well wake up earlier and get more done.
I’m enjoying a brief respite right now since I just had my Remicade infusion a week and a half ago. I sleep 8-9 hours each night. While I still wake up a little groggy, I feel pretty good throughout the day.
While fatigue is my most constant Crohn’s companion, pain, vomiting, and diarrhea like to visit me as well. Luckily I haven’t experienced any pain or vomiting in several weeks, but my bowels empty themselves with joyful abandon a few times per week.
Hopeful Changes on the Horizon
My MRE from a few weeks ago indicated that my Crohn’s is still active. Yesterday I had a follow-up appointment with my gastroenterologist.
Without trying to explain the medical details, I’m at risk for a serious condition which would require surgery to treat. I accepted all of my doctor’s recommendations without hesitation, a course of treatment that he describes as aggressive.
My gastroenterologist increased all of my meds. He doubled my dose of the oral medication I take daily. He also increased my Remicade dosage, which I will now get every 6 weeks instead of every 8 weeks.
Honestly, even though I expected this news rationally, I emotionally was not prepared to hear all of this. I cried a lot yesterday. Like the entire drive back home after leaving my appointment. And then intermittently throughout the day.
All I wanted to do was call my mom.
Grief
I might not cry all the time, but I still miss my mom every single day. It still hurts so much to know that she’s gone. In some ways, I’m still in denial. How is it possible that I’ve lived over a year of my life without my mother?
I’m only 29 years old. Even with all my health problems, I feel confident about surviving another 40 years or so. But I feel so heartbroken and overwhelmed that I have to live that long without my mom.
And yet I’m still thankful
I’m in a really shitty season of life. There’s just not another way to describe it.
But Dan is giving me time to heal. Dan’s job supports both of us comfortably. I have time to sleep and to exercise and to call my insurance company and to argue with hospital billing and to go to doctor’s appointments.
It’s hard for me not earning money for our household. It’s not easy to depend financially on someone else, not when I spent so many years living independently.
But taking this time to focus on my health will be better for the Flong family in the long run. Dan and I want to have a kid one day, which can’t happen while my Crohn’s flares. As in, I literally discuss the safety of pregnancy with my gastroenterologist each time I see him, and he continues to tell me, kindly, that I need to stay on my birth control while my Crohn’s is this bad.
My future child will be at less risk for premature birth, low weight, and birth defects if I can get into remission before I get pregnant. I will be a better spouse and parent if I manage my Crohn’s well. Now is the time to improve my health, while I’m still young, while I’m still childless.
So I am sick, and I am sad, and I am sad at being sick, but I am still thankful for the privilege of being able to heal. Not everyone is so financially blessed. Not everyone has such supportive family networks who understand chronic illness and grief.
Moving forward
Next week will mark two years of monthly goal-setting. I plan to announce a change to how I set my goals because I need to start thinking big picture and long-term. This will affect what I do online as a writer and social media influencer. No, I’m not quitting Belle Brita, but I do need to refocus how I spend my time online.
Right now, I am grateful for the gift of time that Dan’s job provides me. I just need to be a better steward of that gift.
As always, I’m linking up with Charlene for Thankful Thursday!
What are you thankful for this month?
I’m so sorry that your health is causing so many troubles these days–I really hope your body will cooperate with treatment and hopefully get into remission soon so that you’ll have relief. As you know I’ve been learning a bit recently about the combo of physical ‘illness’ + pain + traumatic doctor’s appointments plus grief on top of it all and man…it’s a killer. I’m so thankful for my normal health and don’t take it for granted. Chronic illness is an extremely tough battle to have to face.
It’s just everything all at once is almost too much to bear. I just feel weary.
I have a good track record of responding to medication, so I really hope all the increased meds will do it for me.
Thank you for your kindness. <3
I’m sorry that you are having to deal with so much crap lately. It can be so challenging to deal with chronic illness on top of everything else the world throws at us on a regular basis. I am glad that you have such a supportive network behind you, because that is so valuable.
Thanks, Sara. Now is just a particularly low moment in a nonstop period of rough years. I am very grateful for my friends and family who love and support me. <3
Wow! I’m a recent follower, so this is my first time hearing of a lot of the things you’ve been going through. Girl, that’s a lot. I’m glad you have a support network, though! I hope things start looking upward soon. <3
Welcome to my blog! I love all things pink and sparkly, but I’m not afraid to admit my life is a lot harder than my style and decor. If you haven’t already, check out the Start Here tab on my toolbar, which introduces the main topics of my blog, including grief and Crohn’s.
I will definitely have to check that out! Thanks! <3
It’s so great that you can be thankful during this time. And it’s so great that you are able to take time to take care of yourself.
Yeah, I know not everyone with a chronic illness can actually take this much time to work on it. I’m very fortunate.
Youre an inspiration, Brita. I’m sorry to hear your health is not at its peak. I’ll keep you in my thoughts and send some positive juju. xx
I am so sorry for all that you are having to face right now. I know how chronic illness can wear on a person, having watched it wear on my mother. And I cannot imagine the pain of losing your mother. Your strength and positivity are inspiring.
I feel you. I’ve been dealing with some minor health issues lately, and thanks to the fatigue, I feel like I’ve been sleepwalking through life all year and having bad months instead of bad days. It’s great that I can take the time to focus on health and career development, but it’s also frustrating to not be more of an active partner. My condition’s been in remission for a while, just been dealing with the aftermath of a flare-up due to allergies. But even so, I’ve been warned about the increase in pregnancy risks if it’s not under control at that time – which is oddly stressful/surreal, even for someone with no intention or desire to reproduce in the near future. Because while these sort of risks are a fact of life, this gives it a sense of almost fault instead of just biological chance. So all my sympathy. Hoping the new treatment helps you <3
Boooo (and not in a Halloween sense). I’m sorry you’re dealing with all of this. You have every right to be upset and sad and still grieving. What a sucky season you’re in; I hope the end is near so you can go back to living a healthy life.
and while I hate giving out “advice”….have you tried a nursing tank top? They have a little extra support for the girls, but it’s still very much a tank top, and they’re really, really comfy. Just a thought if you’re running out of options. H&M has them for cheap, and you can sometimes find cartwheel deals for them at Target.
Thank you, friend. I really appreciate you taking the time to comfort me, as I know you’re also grieving right now.
Funny enough, another friend asked me if I had tried nursing sleep bras! I just ordered a set of four camis with shelf bras from Amazon as a stop-gap until I can go shopping on Tuesday. Granted, my tanks arrive Monday… But $20 for a 4-pack is a small investment! Plus even if they don’t really work as bra replacements, I need to replace all my tanks anyway. I’m going to my favorite bra store on Tuesday, and I will see what Target has!
It’s a beautiful quality to be able to be honest about feeling shitty, yet not denying all the things you’re grateful for. Many would say they contradict each other, but I think being honest about BOTH is beautiful and human.
I’m sorry you’re dealing with this Brita! Chronic illness is no joke, and you’re a tough cookie that will get through this.