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Join us for an interview with Christina and discover how she has been able to manage through her journey with Lupus. This is Christina’s Healthful StoryTM. Please note that the video may only play in landscape mode on a mobile phone.

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If you’d like to share your own Healthful JourneyTM, you can upload video here or e-mail contact@healthfulheroes.com to arrange a live half-hour interview.

>>>> Please consider supporting our Healthful MissionTM to share individual health journeys to inform, empower, and inspire by clicking here. <<<<

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Navigate Christina’s Journey:

My name is Christina. I am 32 years old living in Las Vegas. I have a 12-year-old son with Down Syndrome. I was diagnosed with Lupus two years ago. It took them 7 years to diagnose me.
 
In 2013, I had really bad stomach pains. I couldn’t eat. I couldn’t sit up. I couldn’t sleep. I couldn’t lift anything. I went to the ER. Christina’s gallbladder was leaking bile and so she had her gallbladder removed.
 
With pancreatitis, it happens because of binge drinking or cholesterol. Lipase helps regulate digestion. If it is elevated, it eats up your organs. It took a week to get my gallbladder removed. It was Thanksgiving of 2013. Thanksgiving dinner was beef broth and graham crackers that year. 01:35 There were two years where my stomach wasn’t in a lot of pain. In 2016, I was getting pancreatitis a couple times a month. My joints would swell up. I couldn’t walk easily. It would progressively get worse and worse from there. The stomach pain was a 9 out of 10.
 
The body pain was a 7. The two combined was too much to handle at times. At the ER, they wouldn’t prescribe pain killers. They would think I was drug-seeking. I take care of dementia and Alzheimer’s patients.
 
I would have to bring in my dad or male friend into appointments for me to be taken seriously. I had these problems as a kid. These pains were passed off as growing pains. Normal growing pains are legs, back, and shoulders. Not wrists and ankles. You doubt yourself and wonder if you are doing this for attention. The inflammation marker would come back normal, however the antibody test would always come back high.
 
So after 7 tests, the GI doctor told me to see your regular physician. My PCP indicated it was an immune disorder. The GI doctor told me I would have pancreatitis for life and I’d just have to deal with it.
 
I thought maybe there is no actual reason – maybe it is all in my head. Having my son to take care of, I can’t just live in pain all the time. You have to listen to your body when you can’t power through anymore. That’s when you really have to listen.
 
The rheumatologist said that I didn’t have lupus because the inflammation marker wasn’t high. My inflammation marker was not high. How do you explain a doctor specializing in lupus, that they are not empathetic to the journey? I will have said in my appointment that I don’t think you are listening. Certain vegetables may trigger a flare up.
 
Your whole body starts to be in pain. I can’t eat onions anymore. I can’t eat eggplant. They said that is because of pancreatitis. You want your doctor to care and it doesn’t feel like they do.
 
So you finally got the lupus diagnosis. I was told that you have to change your diet, lifestyle, and job. That’s what the doctor told me. I am allergic to a lot of different medications. The normal treatment for lupus are steroids and ibuprofen, however I couldn’t take those.
 
I went with an alternative treatment called plaquenil. You may never be able to run a marathon. I now see the benefits of the plaquenil.
 
It does help. It is a little harder on the body than the NSAIDs. It is a little harder on your stomach. I will try anything safe that will work to get some kind of relief to feel like a human being again. I missed working. It was a really tough eight months without treatment. I managed through the pandemic over Zoom. I tried to do a lot of self-care.
 
I tried to get a good routine going. I would try to talk to anyone who would listen. Coffee helps with headaches – it works for me every time. I am lucky to have a really good support system that will constantly remind me to take a step back. I wasn’t really willing to admit that I needed help. I had  to remind myself to take a break. You have to be very honest and open with your village so that they can help you. If we are open and we share, we might get some information that will help.

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*Betsy's Healthful Journey™ through Stage IV Cholangiocarcinoma

*Betsy's Healthful Journey™ with Cholangiocarcinoma

Join us for an interview with Betsy and discover how he has been able to manage through her journey after diagnosis with Stage IV cholangiocarcinoma. This is Betsy’s Healthful Story™. Please note that the video may only play in landscape mode on a mobile phone.

Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

aneurysm
 
6:51 I was like the only patient in that wing of the hospital but I was pretty calm and they did a brain CT scan and they came back to me and they said we found something and those are the words I’ll never forget hearing we found something,,, some kind of mass… they decided to set me up with a neurosurgeon and send me home
8:33 It felt a lot like I pulled a muscle or something in my lower back like – by chronic do you mean constant it was just always always there… So a few weeks of consistent not severe but concerning back pain

Diagnosis

9:47 So I wouldn’t say the weight loss was unintentional but yeah it was certainly enough that a lot of people noticed and commented on it and you know some even you know thought it was too much weight but I was happy. I felt confident I felt like I looked good you know this was yeah how much weight had you lost over what period of time maybe 25 or 30 pounds over six months so not a huge amount

"The rug's been pulled out from under you and this has happened and what else is going to happen and you you're almost looking over your shoulder and I hadn't worked for a while and I felt like I had been in that cycle and getting back out there transitioning to working and not being all about appointments I gotta get here and do this"
Betsy

Medicine moving Quickly, Chemo the First Choice

Brain metastasis and FOLFOX Chemo
Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

Navigate Betsy’s Journey with Stage IV Cholangiocarcinoma

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Our mission is simple: to respectfully and accurately chronicle indivdiuals journeys through illness to inform, empower, and inspire each of us on our journeys to better health. Our voices, together, can make a difference for each of us, and for each other. Thank you.

Our mission is simple: to respectfully and accurately chronicle indivdiuals journeys through illness to inform, empower, and inspire each of us on our journeys to better health. Our voices, together, can make a difference for each of us, and for each other. Thank you.

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