Christina's Healthful Journey through Lupus

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.