This week’s interview is a little different than the last three. I met Jeana Weiss in the process of starting this series, so we don’t know each other very well. But, I am honored to interview her today nonetheless, and inspired by her resilience. She is amazing, and does not let her chronic conditions get in the way of changing lives.
Jeana has multiple conditions, and told me it is hard to know which is impacting her in the course of her daily life. Here is how she describes each of her illnesses:
- Rheumatoid arthritis produces intense joint and spine pain. It affects my feet more than my hands, but the pain isn’t consistent – it changes. I receive methotrexate injections and I eat a gluten free diet to manage it, and both help.
- My lupus means the sun makes me ill. It also cause skin issues and irregular pain. I basically have to hibernate in the summer to get through.
- Sjogren’s syndrome affects my eyes the most by drying them out, but sometimes also dries my salivary glands too. Two years ago I was literally a few minutes from death from choking because I couldn’t swallow. I had to have my esophagus surgically stretched. I will have to have it done again this year.
If you are like me, you feel almost overwhelmed just by these diagnoses. If I could give you one piece of advice…don’t stop reading. We need to hear Jeana’s story, and others like hers.
If you are interested in learning more about these conditions, Jeana provided some great resources to learn more about rheumatoid arthritis, lupus, and Sjogren’s syndrome. I found the Sjogren’s one particularly insightful, because it includes a visual component.
She also recommended a book that looks absolutely incredible: Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend (Conquering the Confusions of Chronic Illness). I have not read this book, but honestly the title alone puts it near the top of my reading list. If anyone has read it please comment below with your thoughts on it.
I love my daughter Stephanie, but it has been a struggle. When she was 5, I was told to put her in an institution. At age 11, I was told she was dying and would be dead in a short time.
One year later, she was diagnosed properly with Fragile-X, the leading cause of genetic autism. She is now 35, living in a small group home and working 3 jobs. She will never be able to live on her own, but she is living.
I founded a nonprofit ministry for low income and homeless, and I am so proud of this. I also help start a soup kitchen 5 days a week at a church. Right after the diagnosis of Lupus, I was having depressions and pity parties. I found that serving those with so little it takes my mind off me.
I helped a family who lost their home, and their children were taken away as a result. There was no abuse, drugs or violence, but children’s services were so backed up there was no movement. This family did everything to get their children back, and still fell through the cracks. I was able to reunite this family within a week.
We still keep in touch. I was said to be “The Voice for the Voiceless” in a local newspaper article.
I have cut back on the outreach because of funding issues and health but I try to stay involved in the community. I am now working with a church and other agencies to open an emergency shelter for homeless families. I hope to submit a grant soon.
The loneliness and isolation. When I do not feel well enough to even do everyday things, it is so difficult to have a social life. I cannot make plans and promise to follow through. If I have a flare up or infection, I am not up to going out. Beyond that, most people have no clue how much energy it takes to “act normal”.
When I am sick, it is difficult to ask for help, especially when I cannot return the favor. So many people say, “Let me know if I can do anything.” I have learned chances are they really do not want to do anything. It is hard enough to ask for help, and it hurts even more when I am rejected or shined on.
I would like others to understand that I am not being irresponsible or undependable if I cannot make it to a function or meeting that I told you I would be at. My energy level is low. I am not being selfish. The truth is, in a typical day I probably have three or four hours maximum that I can function well.
I may look healthy but I am not. There is always inflammation in my body.
Sometimes I am told it is all in my head. Many people think I must be a hypochondriac. They cannot understand how anyone can have so many health issues, or even wondered if I was using them as an excuse. Honestly, I might have at one time but I don’t today.
There are many people who think I should just “suck it up.” I wish it were that easy. Most do not realize the daily struggle.
That is a tough one. I have been told that if I had enough faith I would be healed, I pray that time comes but I have to make the best of what I have.
I have connected with phrases you may have heard: “Make your mess a message” and “There is no testimony without a test”.
I make a concerted effort to try to make the best of it and help others.
I have stopped asking, “Why me?” Instead, I ask God to show me what I am supposed to learn.
If there is any way I can do it, especially if someone is depending on me, I do my best to get it done. I know I will pay for days after, but I weigh the risks. Fortunately, I have pain management.
Even with that, I am very careful as to the amount of medicine I take. If I take one pain pill and it does not help, I try alternative ways such as hot baths, heating pads or tens unit for muscle spasms. I never increase the dosage or take them too close together.
When I mentally do not have the capability which I call brain fog, I just have to shut down. I have learned to accept that as part of the conditions. I know if I try to work through it, everything will get worse and take longer.