Well, things have been busy lately. I applied to go to D.C. for the American College of Rheumatology but I wasn't chosen this year. They wanted to try to get people from different areas of the country this time. Two of my friends were chosen though! I want to wish Marianne and Pete the best of luck when they go. Have a good time and have your voice heard! Enjoy D.C. too, it's a pretty city!
It's almost a good thing I didn't get picked to go this year as other things have come up that I am working on now. I'm working with Arthritis Introspective (there's a link to the website on the right side of my blog) on our online auction. It is to raise funds for our annual Gathering and for scholarships to help with travel expenses for people to attend. The auction is taking up most of my time each day. Sending and answering emails, writing letters, phone calls, writing and mailing letters, and following up with possible donors. Next week will be spent hitting the streets and visiting local businesses and asking for donations. We have a Facebook page about the auction. We'll eventually have a preview page of the items up for auction. AI Facebook Auction Page
I'm also looking for professionals and people to speak at our sessions for the Gathering. I'm having dinner with one person on Monday to speak about details. I need to follow up with two other people also. There is a lot to this but I'm excited and happy to be doing something worthwhile and rewarding. I truly hope this year's Gathering will be one of the best! Join our Facebook page and consider coming to the Gathering!! 5th Annual Arthritis Introspective Gathering
I also submitted videos to a website that was looking for people with RA that advocate and use social media to spread awareness and their personal issues with Rheumatoid Arthritis. So I worked on those last weekend. They are adding new videos as they edit and complete them. I'm hoping to see mine on their website soon! I'll let everyone know if/when they are posted!
During all of this I had my Actemra infusion on Thursday. On Friday, I felt absolutely horrible. It was as if I was hit with a sudden flare. I could barely bend my left knee, which if you've had that, it is extremely painful and makes it difficult to go to the bathroom! LOL! Also my hands were swollen, painful and difficult to bend them. It's still bad now, along with extreme fatigue. I may end up in bed all day today...
This disease is so unpredictable and it pisses me off. I can't seem to get it under control. I know there are many others that have it much worse than I do. I feel for them. I have personally been in a lot more pain than I am right now also. I just don't know why there isn't something out there that can control our disease so that we can get our lives back. I want to work again, but it's not possible. I could not be a reliable or dependable employee. I have a good day, then a bad day. I have fatigue. I never know when a joint is going to flare and cause pain. I can't stand for long periods of time. I can't sit for long periods of time either. I can't do a lot of walking, lifting, use my hands, etc. The work I'm doing with Arthritis Introspective, I do at home when I'm able. I can take breaks, and/or a nap when I have to do so. I can take a day off if my pain level is that bad. What other job would allow that? None that I know of. It upsets me that I can't get out there and make some money, gain back my self-worth, not looked at by others as lazy or a loser...
I really hope that one day things can change. I do look forward to working with other non-profits that will focus on awareness, advocacy, and helping others with RA.
So that's it for now. It's time for the weekend to start. I hope everyone has a good one!
I'm also looking for professionals and people to speak at our sessions for the Gathering. I'm having dinner with one person on Monday to speak about details. I need to follow up with two other people also. There is a lot to this but I'm excited and happy to be doing something worthwhile and rewarding. I truly hope this year's Gathering will be one of the best! Join our Facebook page and consider coming to the Gathering!! 5th Annual Arthritis Introspective Gathering
I also submitted videos to a website that was looking for people with RA that advocate and use social media to spread awareness and their personal issues with Rheumatoid Arthritis. So I worked on those last weekend. They are adding new videos as they edit and complete them. I'm hoping to see mine on their website soon! I'll let everyone know if/when they are posted!
During all of this I had my Actemra infusion on Thursday. On Friday, I felt absolutely horrible. It was as if I was hit with a sudden flare. I could barely bend my left knee, which if you've had that, it is extremely painful and makes it difficult to go to the bathroom! LOL! Also my hands were swollen, painful and difficult to bend them. It's still bad now, along with extreme fatigue. I may end up in bed all day today...
This disease is so unpredictable and it pisses me off. I can't seem to get it under control. I know there are many others that have it much worse than I do. I feel for them. I have personally been in a lot more pain than I am right now also. I just don't know why there isn't something out there that can control our disease so that we can get our lives back. I want to work again, but it's not possible. I could not be a reliable or dependable employee. I have a good day, then a bad day. I have fatigue. I never know when a joint is going to flare and cause pain. I can't stand for long periods of time. I can't sit for long periods of time either. I can't do a lot of walking, lifting, use my hands, etc. The work I'm doing with Arthritis Introspective, I do at home when I'm able. I can take breaks, and/or a nap when I have to do so. I can take a day off if my pain level is that bad. What other job would allow that? None that I know of. It upsets me that I can't get out there and make some money, gain back my self-worth, not looked at by others as lazy or a loser...
I really hope that one day things can change. I do look forward to working with other non-profits that will focus on awareness, advocacy, and helping others with RA.
So that's it for now. It's time for the weekend to start. I hope everyone has a good one!
The last large paragraph you wrote was like you were taking the words right out of my mouth. The unpredictable nature of this disease is probably one of the absolute worst parts for me. I try to keep a positive outlook but sometimes it can be extremely difficult. Although this is my first comment on your blog (I think anyway)I can see a lot of commonalities between us as far as RA goes. I know how frustrating it can be to feel like you can't live your life to the extent that you want to. I don't know if this comment will make you feel any better or if it will even make any sense since I'm pretty tired right now. I just wanted to let you know that you aren't alone and that I am very inspired and grateful for the things that you do to help others with RA.
ReplyDeleteHey there, RA Journeys. I don't think we've met yet. I used to be heavily involved with AJAO conferences. Deserae and I have discussed this already, but I think it's worth mentioning: My girlfriend Shelly and I both have had RA for most of our lives, combined total years of the disease=75+, and we've come up with a presentation on disability and sexuality. Des suggested y'all may be interested. Shelly and I are going to get to the gathering this year, but please remind the board that we're interested in speaking, and keep me in the loop. rbhern (at) gmail (dot) com. Or I think we know each other on Facebook, don't we?
ReplyDeleteTake care,
Robert Hernandez
PS If you're serious about wanting to work again, talk to me. I work from home on my own schedule, on various projects, and I'd be glad to share them with you and help you pass the tests, if needed. You have good Internet, right?
Thanks Robert.
ReplyDeleteI'll have to speak with the person doing the scheduling and find out the exact topics we are looking for... I can let you know when I find out!
My computer is okay, but I really need a new one soon. It would be great to work from home and be able to make enough to live on comfortably.
Thanks for the help,
Michelle
Tiff, thanks for commenting. I think so many of us go through these same feelings. That is why I blog about them. It helps to know we're not alone. It is difficult not being able to do the many things that we used to enjoy or just want to achieve.
ReplyDeleteIf we can each help one person with this disease, we've done a good thing!