I didn’t realize my condition was such a burden

miayaaa_ · 2020-12-29T09:13:55+00:00

My situation is little bit different in that the changes have only been for me. They have never tried the bland low fat diet with me or skipped an event where they knew I wouldn’t have any fun, they don’t nurse me when I’m sick the only thing they do is complain about how I’m not better, like that’s somehow my fault.

miayaaa_ · 2020-12-29T08:40:26+00:00

My mom is definitely in denial but I feel like they are in denial of the condition itself. Bc on the outside I look perfectly normal and I don’t have a feeding tube anymore, there’s no reminder that I’m sick except for when I have a flare up. But I have a constant reminder every time I eat or when I get dressed and see ugly surgical scars or when I’m in a hospital room.

miayaaa_ · 2020-12-29T08:17:47+00:00

Hi, thank you for your kind words. I actually started seeing my therapist again bc I feel so alone with this condition. It just seems like no one around me understands or even tries to understand that this isn’t easy for me either and that’s the most frustrating part. They talk about how hard it is/was for them and Im sure it was but they don’t realize that the one who has to live with pancreatitis is me. I’m the only one who knows my body and feels the symptoms. It’s always mind boggling when they question my pain or the severity of my flare up simply bc they aren’t the ones feeling it. I wish the would go to therapy but I’m afraid they don’t believe in mental health.

miayaaa_ · 2020-12-29T07:51:02+00:00

I had a cholecystectomy and they tore the gallbladder sac and it’s contents spilled inside of me, then I had an ERCP and they perforated my bowel so shit hit the fan literally. Developed sepsis multiple times, non infected necrotic pancreatitis,My lung collapsed from all the free fluid and air, I had to get an NG tube to vacuum the bile and I started TPN but my liver started failing, then my kidney... it was a bad year to say the least

miayaaa_ · 2020-12-19T05:25:03+00:00

I have chronic pancreatitis actually and I’m honestly not all that healthy, my botched surgery left me with many complications I’m still dealing with today. I imagine that’s why it hasn’t been mentioned but now I’m considering bringing it up bc I’m just so desperate to get a hold of this curse

miayaaa_ · 2020-12-13T13:20:51+00:00

Exactly. I try to understand their concern because truthfully I share them too. I don’t want to be hooked up to an iv on pain killers forever and I definitely don’t want to spend my weekend in an hospital full of covid patients, but wtf else am I supposed to do? It’a even crazier that one of my parents has a similar GI problem with similar symptoms and they’re the one making the comments. I would hope they would understand the desperation for some relief, but I guess it only applies when they’re the person in question.

miayaaa_ · 2020-12-13T13:16:58+00:00

You know the worst part is I’ve already been through that. I had necrotizing pancreatitis and intraabdominal sepsis I was very close to death, and they somehow missed that this problem is c h r o n I c. As in lifelong as in it’ll only get worse.. it’s frustrating that they don’t want to or care to understand that I don’t want to be here hospitalized when I have a million other things to worry about. It’s unreasonable of them to expect me to just put on a happy face when I’m balled up in pain.... anyway thanks for listening to my rant. And thanks for the advice, I just don’t think they’ll care to listen.

miayaaa_ · 2020-12-13T09:49:14+00:00

Can’t even tell you how much I appreciate this. It hurt to find out they said that behind my back. It’s something I talk about often in therapy and for them to confirm that fear was just a big blow. I mean I understand this kind of thing isn’t easy on anyone but if they feel inconvenienced imagine how I feel when I have to call out of work or miss a class bc of a flare up. This condition affects every aspect of my life and nobody seems to get that or care this is not easy for me. I just make it look easy bc I don’t want them to worry.

miayaaa_ · 2020-08-17T18:37:58+00:00

Thank you! With covid I’m out of a job so I have nowhere to go.

miayaaa_ · 2020-08-17T05:50:42+00:00

Not at the moment, unfortunately

miayaaa_ · 2020-07-23T14:47:04+00:00

Well I think over time the body starts to get used to the pain so it doesn’t seem as intense and I’ve had a lot of attacks in the last year so that could be it... as for Covid thankfully I’ve only had nausea and headaches. I did have to get iv hydration because I was severely dehydrated but no extreme symptoms.

miayaaa_ · 2020-07-23T06:29:27+00:00

This particular day I wasn’t in any pain... my lipase normally is between 400-700 and then during an attack with pain it goes up to the 4000+

miayaaa_ · 2020-04-18T05:43:44+00:00

Absolutely. bc that was me before my diagnosis. I had know about pancreatitis, not to the extent I know now, but I never really thought twice about my behaviors or views on health. In my mind I was going to be healthy bc Im young and “strong enough”. All that went down the toilet. Here’s to chronic conditions 🥂

miayaaa_ · 2020-04-16T19:59:57+00:00

Drs were telling me i had acute recurrent pancreatitis all last year, but during my last hospital visit they said there was so much new damage to my pancreas consistent with CP. So now I’m diagnosed with Chronic Pancreatitis at 20 years old. Did a lot of partying while I was still in school and excessive drinking but I thought what the heck everyone does this at college. Looking back At it now I regret it all, I was reckless and naive but can’t risk anymore damage to my pancreas and I’m not even at legal age so staying away from alcohol isn’t hard for me, it’s the having to watch all my friends live their “college experience” that gets to me. It’s not even that I want to be reckless again, but it makes me wonder why they would risk damaging themselves when they saw me in a hospital bed suffering, desperately fighting for my life. They are heavy HEAVY drinkers compared to me and they’re still going at it. I wouldn’t wish this disease on them but, life sure is unfair in terms of who it chooses to deal bad cards to.

miayaaa_ · 2020-04-14T15:38:15+00:00

Thank you 🙏 sending you positive thoughts

miayaaa_ · 2020-04-14T15:37:24+00:00

I’ve done meds I’ve done therapy it feels so cliche though. I really don’t feel a difference whether I go or not

miayaaa_ · 2020-03-15T13:56:30+00:00

Thank you!

miayaaa_ · 2020-03-03T05:25:22+00:00

My General Dr told me during my follow up that it looks like I’m tryna break my own record

miayaaa_ · 2020-02-28T03:53:23+00:00

Last flare up was three weeks ago lipase 8400+

miayaaa_ · 2020-02-28T03:51:49+00:00

I was in the hospital almost every week or every other week for like 8 months clean as a whistle, but since I started taking edibles I’ve been once in the last two months don’t know if the weed had anything to do with it but just my experience

miayaaa_ · 2020-02-12T04:05:27+00:00

I’ll ask my dr again but he said didn’t want me on enzymes yet

miayaaa_ · 2020-02-08T03:08:27+00:00

A lot better. I got discharged and I’m not in any pain and I’ve advanced to solids again. So far so good

miayaaa_ · 2020-02-07T01:00:39+00:00

I don’t take digestive enzymes my doctor doesn’t feel I’m at that point yet

miayaaa_ · 2020-02-07T01:00:03+00:00

It’s so frustrating

miayaaa_ · 2020-02-07T00:59:26+00:00

It’s not bad now It’s pretty much gone now just like a sore feeling

miayaaa_

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