Standing your ground

[LeopardMom]

I really hope I'm not alone in this.

For the last 10 years I have suffered from recurring upper abdominal pain - the kind that wakes you up in the middle of the night, so bad you're crying in the fetal position - and (TMI) constant diarrhea. I mean, doesn't matter if its lettuce or steak, it takes 30 minutes -if I am lucky- before I better be close to a well established restroom. But I digress.

In November I passed out at work. I loved my job, but it was very physically demanding - all my jobs have been, I like to be active - I had been working extremely long hours and too many days in a row. I simply felt it was my fault because I wasn't taking the best care of myself. I scheduled an appointment with our local medical clinic (I live in a rural area) where I learned the following:

I had lost 55 pounds in 1 year - partially due to cutting out energy drinks and soda - I was down to a whopping 112 pounds.

My protein levels were really low - awkward, I know. Still never followed up on that.

I was dehydrated - Ok, note taken. Drink more water.

Lesions on my liver and kidney - also never followed up - I've just grown to assume that everyone has lesions on their organs at some point or another so if they aren't worried, I'm not worried, right?

And finally, a tumor on my left ovary.

So we remove the tumor(and the ovary). Still struggling with weight loss. I have ZERO appetite. Like none. I do get somewhat hungry after I get a good workout in, but any other time there is no desire for food.

For 10 years, I was told they thought I had a hiatal hernia so I chalked every painful episode, every bout of severe diarrhea, all of it, was because of a hernia. Then, they tell me there is no hernia.

I'm just now seeing a doctor who is patient and seems to understand that I just know there is something wrong with me. Unfortunately, that means I get the pleasure of doing a stool study.

Between mental health issues and this persistent mystery disease sometimes I feel like I am nothing but a burden to those around me. My husband, kids, and those around me are a terrific support system. They just don't understand the daily struggle I live with.

I guess thank you for reading my rant and please if you can help point me in a direction to get a backbone to taking charge of your own health let me know.

LeopardMom

[Susaberry]

I’m sorry you’re suffering. Please don’t accept no for an answer. Insist that they find the cause of your pain. If you think you have chronic pancreatitis, then demand an Endoscopic Ultrasound. It’s how I was diagnosed after two years of being told there was nothing wrong because my bloodwork didn’t show anything other than “fatty liver disease.” It wasn’t fatty liver disease. By the time I had the EUS, my pancreas was damaged to the point that it was scared by previous acute attacks. My pancreas was burning out, which is why when I had pain strong enough to go to the ER, my enzymes weren’t elevated. I don’t know where you live. I would go to the National Pancreas Foundation. There are hospitals throughout the country that have earned the Foundation’s Center of Excellence designation. If your doctor won’t refer you, call yourself to be seen. Healthcare is really bad now, so you need to be demanding.

[ChronicAndAble]

You are not alone in your suffering, confusion, pain or lack of clarity on the best way to understand what's happening with your body and mind.

Thank you for sharing your experience. It sounds draining to not have competent medical attention and care when you need it. I second what Susaberry has mentioned about visiting a hospital recognised by NPF if you're in the US.

You need someone (doctor, hospital and team) who listens to all your concerns and symptoms and connects the dots medically and works on an elimination strategy to offer you a proper diagnosis and treatment.

My amylase and lipase were never elevated beyond 5 or 10% of the normal standard levels even during my worst pancreatic attacks and hospitalisations.

I'm not in the US but the NPF resources have helped me understand the need for cultivating a support system I can rely on and helped me understand medical terminologies and given me resources to elevate my awareness about the condition and how different people experience different symptoms because pancreatitis can be a spectrum disease.

Mind and body have a very strong connection. When one suffers, the other invariably is affected. I would start with understanding behaviours that you have that are serving your wellbeing and those that aren't.

A course I did on Coursera really helped me understand that and helped me make incremental changes to my own behaviours.

See if this can get you started on your journey: coursera.org/learn/health-b...

Take a holistic approach towards your health- Mind+body+soul- Recognise what helps you breathe and feel better and more wholesome and, pursue those things, deliberately and diligently. One day at a time. The aim is progress, not perfection.

You are worthy of being loved, taken care of and respected just because you are here. So you deserve all the love you need right now- give it to yourself first. This is tough. I know. But if you need something, there is no need to feel guilty about it.

I'm happy you have your family to lean on. That is ok. It is a blessing. Welcome it, value it and use it while you build yourself a life that accommodates the struggles and illness you are dealing with.

Lots of warmth and hugs.

[Jesus5]

Dear Leopard Mom. Sorry to hear about your suffering. I am 63 old male from Croatia. Suffering with CP and EPI 12 years. I agree with Susaberry and ChronicAndAble advices. As your apetite, maybe you should try medical cannabis. It was life saver for me this 12 years. It don t work for every one, but it worth to try. You have very good article on Mission:Cure. Best wishies