Tiffany Johnson

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Thirteen years ago I was finally diagnosed with Crohn’s Disease after three surgeries, false diagnoses, a lot of pain and missed work. When I didn’t heal from the last surgery, it was the surgeon who said, “It’s Crohn’s Disease.” Steroids and oral medications didn’t help much. I had been exhibiting symptoms for about nine years before I was finally diagnosed, and by then the inflammation from the Crohn’s had spread.

I was the mother of three children, trying to keep house and hold a job as a paraprofessional educator working with special needs kids in the schools. At one point I was dragging myself to school and hadn’t been able to eat anything for a few weeks because nothing would stay down. I was in and out of the hospital frequently, and fought that because I needed to get to work. I went to our family doctor and he told me that I wasn’t going to make it if I didn’t slow down. He gave me a number to call for assistance from the County, and after an evaluation by a public health nurse, I received a budget that I could use to do whatever made my life work a little better. I hired PCA’s (personal care assistants) and I did start feeling better – less stressed.

I managed that for a couple of years with another company before I finally followed through on a recommendation to call Orion Associates. In the first couple of years with the other company, I used some of the funds to make my house more accessible. But as I started spending more on PCA’s, I grew anxious to get away from having to use a PCA agency. They provided oversight of their employees, but we had to set up appointments for the supervisors to come into the home and it wasn’t always when I was feeling good. The supervisor would also suggest ways for the PCA to provide service to me, and it wasn’t always a service that I needed.

Orion gave me more freedom to manage my PCA’s. We set up a time to meet in person to talk about their services, but I was feeling terrible at the time, so I appreciated that we could meet by phone. They arranged a meeting with the county waivers official, who determined my allocation for the year, and I was able to work with my contact at Orion to set my budget. From the beginning of my work with Orion Associates, I had more flexibility to hire friends or family members to be my PCAs. Orion takes care of the paperwork, including filing taxes, that goes with having employees. I received a packet on how to be an employer, and what numbers to call if I had an issue. But most importantly, I now work one-to-one with my employees to determine what needs to be done on any given day.

Today, thanks to the extra help that I get, I feel better more often and don’t usually have to depend on getting my food through an IV. Now that my three oldest children are at or approaching adulthood, we talk about how difficult those earlier years were for them. Despite the fact that they were small children, they felt responsible for taking care of me. Now that I have help, they can pursue their lives and activities and just be kids. That is the way it should be.

Thirteen years ago my family doctor told me that there was a 1 in 500 chance that one of my children would be diagnosed with Crohn’s, too. My oldest daughter, who was seven when I was diagnosed, was diagnosed with it recently herself. I’m grateful that she’s far healthier overall than I ever was. This is in part because diagnoses happen more quickly, slowing the progression of the disease, and there are now more effective medicines that can be given intravenously. When her little sister was born last year, I was told that the odds of a child inheriting Crohn’s Disease were now 1 in 20. I am, of course, very hopeful that the understanding and treatment of this disease will make it something that can be prevented, or at least more manageable.

Crohn’s is not a disability that you can necessarily see. If I’m having trouble digesting things I am stuck in the house. If I go out, I’m having a better day than usual.

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