Interview Story: The Disease Doesn’t Control You.

Jill Paulsen, age 63, recalls a part of her life that has affected her everyday routine. “My first symptom occurred when I was 25… my wrists felt like they were broken. I couldn’t put my socks or shoes on. I couldn’t hold my 6-month-old baby.” At the time, Paulsen had no idea what was going on. Constant swelling pain surged through her body throughout the day, and finally she decided to see the doctor. After the tests were completed, they couldn’t pinpoint what her diagnosis was. Her doctor told her she had an “underlying arthritic condition”, and all that could be done at the time was a mild medication.

Almost 20 years passed with this reoccurring “condition”. Paulsen explains that there would be nothing wrong one day and the next day she would have trouble walking or doing anything with her hands. “My feet hurt a lot, mainly my ankles”, she added. In 1995, she finally got some answers. “I was 43 years old when I was finally diagnosed… that’s a long time to wait for an answer. Not knowing what was wrong with me made me think, is this in my head? Once I found out, there was relief knowing there was something”, says Paulsen after asking what it was like to not really know what her condition was for almost two decades.

The day she was diagnosed was the day she woke up and physically could not get out of bed. Her doctor ordered blood work and tests. The tests confirmed she had more than one autoimmune disease. She has a mixed connective tissue disorder, including Lupus, Rheumatoid Arthritis, and Sjogren’s disease. Sjogren’s is known as a dry-eye or dry-mouth disease, and mainly affects mucus membranes. Paulsen has a mild case of Lupus that only affects her joints. As for Rheumatoid Arthritis, this disease is the main source to her pain. Her symptoms with Rheumatoid Arthritis are severe, where her immune system attacks healthy joints and cells. It has affected her joints causing swelling and pain. The symptoms also jump from joint-to-joint, affecting multiple areas at once in some cases.

Her first assigned rheumatologist confirmed the positive results for her diagnosis, and had given stronger pain medication. Paulsen went almost 20 years taking Tylenol with this condition. Stronger medication helped immensely, yet Paulsen recalls that it did not help any flare-ups, swelling or redness. When her family insurance changed, she had to switch doctors. Her new rheumatologist decided that they had to approach it more aggressively, putting her on other medication and requiring her to live a more active lifestyle. “Being active helps, working through the pain and keeping myself busy makes this condition easier to work through”. Paulsen then adds, “pain kicks in when I’m not active. I focus on pain when I’m not working, and it feels worse”.

The downside to the strong medication is that it can affect other things, like the liver or kidneys. On the positive note, Paulsen replies, “I’m lucky. I’m lucky because every month when I go in for my IV infusion, I’m sitting right by someone going through chemo. This disease is something I can live with.” She states that no internal organs have been affected. “I rarely get sick, which amazes me,” says Paulsen. Since working with her new rheumatologist, she has joined a support group online.

When asked what she would tell someone who was diagnosed the same as her, she replied, “find out as much as you can about it, don’t shy away from it. You also must be comfortable with your physician. I’ve been lucky having good rheumatologists. Lastly, don’t feel like the disease controls you.” Paulsen has been living with her disease for over 20 years and is living a happy and healthy lifestyle, mainly including her trips to Florida to visit two of her kids and four of her six grandchildren.

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