It has been a while that i have spent time writing for all my Lupus Community and others who enjoy visiting my blog! My apologies but Life happened. Many great things happened, but at the same time I’m here at … Continue reading
For a few years now I thought I was having some sort of tremors or shaking of my head and then realized they were awake seizures…not too serious I thought! Have you ever had that? I just thought maybe I … Continue reading
Here is today’s Howse Foundation Lupus Support group with #theramu CEO Gary Lowe speaking about options we have for our pain…
“Tonight on @aspiretv!
THE FIRST EVER #LUPUS DOCUMENTARY BEING AIRED ON CABLE TV TONIGHT! 💜😲💜 PLEASE SHARE so that everyone can watch this film bought to you by @jperryfilms and learn more about this debilitating disease. @aspiretv
Our final episode of #ABFFIndependent is TONIGHT @ 9p/e hosted by @davidbannerlikespictures. Check out this sneak peek!
This Saturday is the Lupus Foundation of America walk in Los Angeles. It will be taking place at LA Live on September 24, 2016. I know I haven’t kept up with much of my blog but I’m planning on getting back to my writing. I need to let you all know about school, work and just life! There’s been new medical issues with me and diagnoses! I’ve been off my meds for 2 months and I’m trying to deal with all of it. Hope to see some of you this Saturday. Plus, I will be speaking about Lupus and myself at Immaculate Conception School in Downtown LA Friday morning!!! Hope to post pics and/or video. Hope you all have plenty of spoons my friends:)
I know this is an awkward topic, but imagine having the ugliest nails after being the type of girl who likes getting their nails manicured, having acrylic or gel and pretty colors all the time even if I was the one who had to do them myself. I can’t even have regular polish on my nails, my nails are chipping in the weirdest and most deformed forms. The bottom or nail beds are coming apart and it seems my nails are going to fall off. It is very noticeable it’s nothing I can hide from others and it’s very embarrassing and besides that every time I look at them I just cry. I cry because I can’t believe lupus is attacking my body once more, in a different form, yes I do have raynauds and they go hand in hand. My lupus flares so my raynauds go buzurks and my fingers start to hurt very badly and it’s extremely painful. I don’t know how many others go through this…I’m sure I’m not alone! Let me know your story and what have you done or what have your doctors recommended….
Just Ask The Cooperative!
Also, make lifestyle changes to reduce stress, which is believed to trigger lupus flares–making your condition worse. You may need to cut back on hours at work or get friends and family members to help ease the demands in your life. Try to be flexible. If you’re tired, rest. If you’re in pain, stop what you’re doing. Know your limits. Lupus is not an easy disease, but it can be managed, and you can continue to live a full life.
It has been very difficult lately to get stuff done. I have to completely pace myself and take things one step at a time. Definitely, day by day. No matter how much I rest I get it seems as if it is never enough. On Monday, all I can think about is getting through the week and it just seems to feel extremely long and like the days just drag when I’m at work. Last January, my doctor disabled me but I decided by August that I needed to go back to work. I went back in late November and now I feel as if I can’t go one another week. Do any of you feel this way? I wonder if I’m the only one with this issue.
I have gone to school to darn long to just give up. I feel like I would let down my kids and the rest of my family. Lupus and fibromyalgia alone are enough to make someone feel extremely and utterly unable to everyday tasks, so just imagine having 6 invisible and chronic illnesses. Don’t get me wrong that there are days I can actually get stuff done just that the next day I kinda pay for it. I went to Disneyland twice this month, so that’s great but keep in mind i did 4 rides the most and came home. I wish and pray that all my fellow spoonies are doing fantastic today, tomorrow and everyday!
Watch her videos! Love her.