I’ve completed the last loading dose of my newest bio similar infusion drug, Inflectra. I know most of my family and friends are waiting to know….do I feel better. That is a tricky question to answer. I met with my rheumatologist and had to have an answer to that very question. My answer:
Not what most people who care about me want me to say. Most everyone wants me to say, “Yes, I feel amazing.” Thing is, when I saw I feel good (on a good day) people freak out a bit the next day when I don’t feel well. So like many people living with chronic illness, that question is often uncomfortable to answer. As a patient advocate, I am very aware that many people respond well to this drug, while others do not. That is the catch 22 of autoimmune diseases. Not everyone reacts the same way to treatment.
Thus far, I’ve seen some positive results. I can walk to my work all day AND walk my dog (around the block) when I get home. For months, I could only take her up and down my street which is not what she needs. I can also walk up my stairs at night (I’ve been crawling up for months). So I am seeing progress.
Unfortunately, I am also experiencing a lot of stress which is causing my disease to flare. My mom fell and broke her pelvis and ribs and after a brief stay in an acute rehab center, she is in a skilled nursing home receiving therapy. She had been doing well, but she was diagnosed with pneumonia which adds stress to her body.
I had been traveling back and forth between my home and hers (approximately 2 hours away) to try to get her home ready to return. Unfortunately, my body decided now is the time for me to experience plantar fasciitis for the first time. Which makes walking just a bit more difficult and sleeping very painful. The past few weeks, I’ve been at her home trying to ready it for her return.
My body is tired, my head is spinning, and my heart is sad. As my therapists reminds me, my mom is being cared for, so my job is to take care of her daughter. When mom first entered a nursing home, we were told she would be there for around 100 days. at the most, 60 was most likely due to the extent of her injuries. Medicare; however, decided she was to be released on her 41st day.
Is my mom making progress? Yes.
Is she independent enough to return home to live alone
So now, the home improvements I thought I had time to complete in two months, have to be completed in less than 2 weeks. First up? Painting the bathroom. We need to make it more handicapped accessible. It hasn’t be painted in a long time and really needed some freshening up. I originally planned to hire someone….but there is no time. Today, I struggled, but accomplished painting the walls.
Tomorrow I will do the trim. To say that my body is in serious pain is an understatement, but I did it. I’m hopeful I can rest enough to finish the molding tomorrow. I’m praying I don’t have to do another coat on the walls. Again, time will tell…
So coming full circle, is my new medication working?
Did I do a good job? My cat Milo seems impressed.
I think you are doing a wonderful job. So yeah maybe, ask me tomorrow about yesterday and you will know how I am doing today.
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Hope you are doing well!!