Yes I was telling myself “get up and get on” MOST of today! I realize how important it was over the weekend to rest. Yes, I might not have gotten as much homework done. And yes probably could have done more but you know I needed the sleep. BUT today…my body groaned when my alarm went off. In my mind I wanted to get up and do things…but every bone in my body was screaming against it! The good thing was…I did get up and I was able to make it to work!!! HORRAY
Tomorrow I have another orientation session, in my mind I”m going over a way to share more details about the Honors program. I want students to know the benefits of becoming academic involved. I also want these potential students to think long term! I want these students to realize that to really get somewhere you have to be prepared, organized, and more than anything else…FOCUSED.
I asked a question today on my FB page (www.facebook.com/STLRALF), it was what would you want people to know about your invisible disease. I got some AMAZING responses to the question. One of the ones that stood out to me was “that people understand I”M NOT CRAZY!” WOW! You know I felt that a lot, especially when I was first diagnosed. I remember when I went and got my red handicap sticker. I could see people looking at me like ‘WHAT You have fine…your not disabled.” People (most people) struggle to understand a disease that doesn’t have crutches or that doesn’t outwardly show. If you are in a wheelchair…people realize oh wait that person has _________ and they are a bit more understanding. But because our pain is inside and our fatigue is invisible to those on the outside, people sometimes probably go “she is crazy”, or “it is all in her head…she just wants attention.”
Well I can say…if I wanted attention I wouldn’t want it because I am in such pain or for a cold that puts me in the hospital for 2 weeks!! Paying off medical bills and paying outrageous private medical insurance costs…..yah definitely don’t want that as an outcome of my attention seeking. So NOT we are not seeking attention…we just want people to know that we are suffering. To understand that we have limitations, pain, fatigue, and foggy brains sometimes.
I’m hopeful that as we advocate more, as we talk more about Rheumatoid Arthritis….that more people will get what it means. The same for Fibromyalgia. These are both major health concerns..both debilitating…both extremely painful. Yet you can look so perfect on the outside…
So I will say it is my hope for those of us who blog and advocate for people to understand about Rheumatoid Arthritis, Lupus, and Fibromyalgia, that we raise awareness. That more and more people get a clearer (or better) understanding of our lives…and what we live through on a daily basis. I used to be scare to share what I struggled with because I did not want to seem less than “normal or perfect.” But you know I realized…advocating/sharing what life is like with these diseases…might be the key to bringing awareness to the world around me.
Rheumatoid Arthritis is a joint degenerative auto-immune disease that is debilitating. It is a systematic diseases meaning it attacks joints and organs, leaving the person struggling with pain, inflammation, and fatigue. Treatment (as the disease advances) includes auto-immune suppressant medication known as DMARDS. Many of the drugs in the DMARD family are chemo like medicine, I have been on three of these such medicines since my diagnosis in 2010. For others, their treatment is the biologic medicine either by injection or infusion. No you cannot always see someone’s pain…no you cannot always see their inflammation. BUT you know what….RA is NOT Oestoarthritis…it can be a disease a 2 year old child can have..or a disease a 21 year old can develop. It is not an old person’s disease..it can happen any time. I encourage you to advocate for yourself and for others.
Talking about our pain can be hard…I have experienced that myself. BUT it is through word of mouth, it is through communication that you can use a “get up and get on” day to change the way people think of our daily journey. At least that is a goal for myself!
Get up and Get on 🙂 Have a great night!