LIVING WITH LUPUS

Living with Lupus was easy at first. However, it progressively became harder as the years past. The last year and a half has been the worst its been.  I guess I should have started this blog a long time to be able to give others information so that they are aware of what is happening to people with this disease.

I have 3 grown children and one granddaughter. In the last year I have had to quit my job and apply for social security disability (that’s another LONG issue). My income has been cut by three quarters. My husband and I lost our home and are forced to move because of this disease. Although I type ugly truths about Lupus and what it does to people I am blessed to have a terrific support system around me.

NASCAR - Irwindale Speedway, CA

Early in my diagnosis I was still able to work, ride motorcycles, race NASCAR, camp, sew, play with my kids, support my childrens school, run a multi-million dollar business and all the things I enjoyed. Today (over a decade later) I find myself 90 percent in bed and unable to easily get around. Im in pain 100 percent of the time and unfortunately I find little to no relief.

Although I am having a hard time, there are break throughs  and things I do to get around the issues of mobility, medicines, therapies, insurance problems, help, support, etc.. This is why I write; to be able to give you all information, experiences and awareness of what is happening to me and what I face so that you aren’t blindsided like I was.

I am extremely empathetic to ALL people facing Lupus or any form thereof as well as their family, friends and support systems. It is VERY important to have some kind of support system whether its help, information, meds or whatever it is that gets you by.

When I say “I understand”, I REALLY do. Please feel free to email me at any time if you have questions or just need an ear. If I cant use my body at least I can use what’s left of my mind to help others.

Aloha