crohnsbae

[crohnsbae]

[crohnsbae]

Does anyone know where I can buy a port access kit online?

My nurse gave me the go ahead to start flushing it at home, but I can't find anything online.

[crohnsbae]

Me to anyone who has asked me how I’ve felt this week: 

[crohnsbae]

So my referral for Shands came through today, but I almost feel like it'd be a wasted trip. From what I've read, Entyvio is supposed to be the best thing out for IBD right now, but my parents keep reminding me about Sterlara. At this point, I feel like I'm just bouncing around from treatment to treatment. I'm afraid I'll get the answer that this is as good as it gets, but I plan to call on Monday and make an appointment anyway.

[crohnsbae]

Spent the better part of my day in a Benadryl coma and it wasn’t until I asked whoever was talking to shut up that I realized I had fallen asleep watching The Golden Girls, so I hope that gives you a little insight into my life. Also, my port didn’t work today. Go figure. Who even knows at this point. 

[crohnsbae]

Ignore my face, but I had another infusion today. Here’s to hoping it kicks in soon! 

[crohnsbae]

My referral for Shands, a hospital that’s the best in the state for GI related illnesses, came through today. It’s located in Gainesville, about three hours from where I live, so it’s more than likely going to turn into an overnight trip, but hopefully this will mean better answers coming soon. 

[crohnsbae]

When you forget that you had a doctors appointment because the office forgot to give you the reminder call.

[crohnsbae]

I haven’t posted in a while. After being diagnosed with Fibromyalgia, my symptoms stemming from that, going back into a severe depressive state and trying to deal with my Crohn’s symptoms at the same time has made life kind of....shitty as of late. No new info to add. Just trying to not give into all of my self-destructive tendencies. 

[crohnsbae]

Chronic illness and ‘feel better’

Thing is, when it comes to a chronic illness, physical OR mental, there isn’t a ‘feel better’ or ‘get well soon’. Sometimes that isn’t an option, and there will never be a ‘better’. 

So instead say:

“I hope your symptoms will become more manageable” “I know your having trouble with x and I’m here for you if you need it” “If you need help I’m here” “I can try to offer advice or comfort, or would you like some space?” “I’m sorry today was hard.” “Would you like to talk about it, or do you want to get your mind off of it?” Or simply: “I don’t know what to say, but I want to let you know that I care about you.”

Please, add what you’d like to hear

[crohnsbae]

Today I’ve just kind of...

[crohnsbae]

Thinking of live-blogging or filming my infusion this friday. It sounds good in theory, but it would probably weird out my nurse lol. 

[crohnsbae]

And the illnesses keep piling up.

After the initial first appointment and labs and more labs, my rheumatologist diagnosed me with Fibromyalgia today. It didn’t come as a surprise because my last G.I. hinted that it could be that after I initially told him about my symptoms, but once the brain fog started really setting in, I kind of knew it would be that. She started me on cymbalta, but other than that, I expected to feel more relieved, I guess? I wasn’t prepared to be diagnosed with yet another thing, but here I am. Collecting illnesses and conditions. 

[crohnsbae]

TBH this sums up my day, plus a Chewing Gum marathon.

PS: I’m still thinking about that grilled chicken sandwich.

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@mmemagpie I’ve tried it once, but it’s not something I’ve actively pursued as it was just passed where I live (FL) and there’s a long waiting list once you submit your info, but it’s something I’m definitely looking into. It’s a better form of pain management than the treatment I’m currently on. Thank you! 

I went to see my G.I. earlier this week and he’s referring me to a different specialist in Gainesville for a second opinion. I never expected for it to be this difficult to find one specific treatment that would work well for me. Remicade felt like the miracle drug and it worked for about seven years for me. But now? I’m half-torn between knowing that everyone is different and worrying that maybe this is as good as it gets for me, and the last two weeks have been anything but good. I guess I’ll see soon what the next step is, though. 

Also: Happy Easter, everyone. 

[crohnsbae]

Making a joke about my chronic illness with a stranger or new friend: *deadpan delivery about my impending death*

Other person: Oh my god. I'm sorry you have to deal with this.

Me: lmao I'm jk. Everything is fine.

Also me: *everything is not fine, but your sympathy makes me want to die*

[crohnsbae]

Six different IV's and a blown vein later, my monthly blood work is finally done. Do I get to be lazy for the rest of the day now? Also, my Snapchat is drunk-uncle, if anyone wants to add this weirdo.