Living with (RA) Rheum Disease Is Already Multitasking
Where have you been girl?
As this post goes up, I’m in a chair with an IV getting my second Rituxan IV infusion. It’s hard to write about myself, but I really need to keep you informed about what’s going on. Couldn’t someone else report about it for me? None of my kids were willing to take the job.
The Rituxan infusion is part of a clinical trial. I’ve not been sure how much I can tell you yet. Anyway, it won’t be the same as a normal infusion this time. It does worry me, but I’ve made my decision.
That’s the same way I felt last week when I walked onto the stage at the ePatient Connections (ePatCon) conference. I’ve already decided to do this; now I’ve just got to do it. I’ve spoken before, even to a group that large. But not under bright lights with a microphone wire through my clothes. Or with video cameras. And certainly not about myself. It’s even harder to talk about yourself on a stage than to write about yourself in a blog. For me, anyway.
Speaking at the ePatCon conference was a great opportunity to reach outside our community to share the RA patient experience. I was so grateful for the opportunity. Hopefully many will see the video and it will reach even farther.
I’m already multitasking! I’m living with RA!
Traveling with RA as a companion is hard we know. And I learned last year on my first trip that it’s also very hard to be around healthy people all day who have no idea how sick or disabled you are. They can’t see anything so they don’t offer any assistance, ETC.
Another thing I learned back then was that I couldn’t blog -n- travel. Apparently, I have to travel and then blog. Traveling or speaking is so physically difficult that nothing else can be added. Meds, food, and rest are not negotiable. At the end of the day, the bed beckons – and not as a place to sit typing!
There is a lot of time and strength required to do things that everyone else takes for granted like getting dressed and walking up stairs or sitting with knees bent. I was pretty disappointed in myself at first. But I had to realize that living with RA, I’m already multitasking. When I get time, I’m going to make some t-shirts with that!
Keep up with my living with RA multitasking! Here’s how!
In my laptop, I’ve got several blogs that I half finished or almost finished over the last month. Projects had to be set aside in order to prepare and attend the ePatCon conference and then to recover. I’ve also had several health issues going on – don’t most of us? So, apparently I’m too busy to keep up with myself lately.
Someday, maybe I’ll get it together enough to do a blog or a newsletter in the midst of times like this, but until then there is a way to keep up with me at least somewhat. You can follow my posts on Twitter. Since there are only 140 characters allowed and I can do it from my phone, I can usually muster up what’s needed to make some kind of post – even if it’s just to post a photo of me meeting a famous author like ePatient Dave!
Recommended reading
- RA, Blogging, and Mary Poppins
- Traveling to a WEGO Health Panel for Health Activists
- Traveling with Chronic Illness/RA Part 2: 20 Helpful Tips
- Traveling with Chronic Illness / RA, part 1
This entry in particular struck a chord with me. What you wrote about traveling and being around healthy people all day………I hate that I can relate so much, but I can, and I respect your ability to say it! Thank you for speaking out- some of us are still learning how.
I think it’s because we are in the same boat.. I don’t feel comfortable saying it, but I hear from so many others that it’s propelling me to speak up. Thank you for commenting too.
Kelly you are one busy lady. I am not sure just how you do it, other than to believe in my heart that God gives you the needed strength to live with RA and all the multitasking that comes with this disease. You may not realize it, but you are such a great encourager for me. I am sure many others feel this way too. Please know that I am praying for you everyday. I strongly believe in the need for and the power of prayer. I also, believe that God is with you through all that you are doing to enlighten, encourage, empower and give hope to the RA community. I know He will certainly be with you in all you live through with RA. May God bless you today and everyday.
I know I only got to meet you for a moment Cammie – your posts are so inspiring to me – God brings us what we need to keep on. Thank you!
Oh my word! I’m so delighted I found you. Just your first paragraph made me feel like someone else really knows what it is like to live with RA. I’ll be here more often.
Thank you Sarah! Welcome.
Hi Kelly: Long time reader, but rarely do I write. I guess I am just too tired, busy, etc. Doesn’t mean you are not doing so much for me and I keep you in my prayers daily. As to your IV with rituxam. I just had my two IV’s in July. I am off MTX and only take prednisone daily (15 mg). Just wanted to let you know I was pretrified at getting the IV and all the things that could happen. It fairly smooth considering I am also a type 1 diabetic of 42 years. I know we are all different with different symptoms of this RA, but thought you would like to know I am relatively pain free for now and not due for my next two IV’s until Jan. 2012. Hang in there. You are in my thoughts and prayes. If you have any questions for me, please don’t hesitate to ask. Di Sullivan of PA
thank you Diane!! I hope it continues to go smoothly for you!
Kelly, thanks for the update. Just do the best you can, multitasking with RA is not an easy task! Pain, fatigue, fever make it so hard to keep up. You look happy in the photo of you and Dave, but I also recognize the look of pain in your face that RA is relentlessly there. Still, you do an awesome job, thanks!
You saw that right Ronda – pain at all times, but it was a very happy moment! …I was late. Had missed my plane due to the monster. I had texted Dave that I was on my way since his was the only phone number in the meeting that I had – – then I finally arrived! It was great to be included. It was an important meeting that day about the Digital Patients Bill of Rights. More on that later. 😀
Hi Kelly,
I haven’t been here in a while, but you guys are always in my thoughts and prayers. I too have been trying to come to terms of this different type of multitasking that I did not choose. I am many times disappointed in myself before I remember exactly what you just said, I am already multitasking just getting out of bed every morning with this desease. Remember that we are not just your fans or fellow bloggers we are also your extended family and we support you in your struggles as you continue to be our voice. Get tired (you don’t have a choice) rest (you must) but always Kelly come back fighting. We fight with you in our ways also.
Peace be with you.
This means so much to me Nicole!
Kelly, This is a terrific post. So “real” about life with illness. Thanks you, Elaine
Yes, I was a little worried, since I don’t tweet or have a Facebook any longer. They tend to be a time suck for me so I stick with email, Yahoo News and this blog for now that I am back in school. But I knew you would be back when you could. Praying for you with your treatment, that you receive the most benefit out of it. Take care.
Kelly, you inspire me each time I read your blog and FB posts. I too have RA and a young family and struggle with the multitasking each day. I consider myself a pace car in the race of life…slow down, put your feet up, ice, do a crossword, then start your engines and go a lap or 2.
Keep up the inspiring work you do.
Thank you Linda! vroom vroom!
Kelly, I so admire your spirit and courage. I know there are days when you must wonder if you can keep on doing this – or anything! I want you to know that you have helped me, personally, immensely. I go to your site when my day is rough…sometimes several times a day if necessary…just to feel like I”m not alone in this. When I see you “keep on keepin’ on” it gives me the little zing I need to keep going…no matter what! Thanks for all that you do.
It helps me to read about other people living with RA. This week I asked my work if I could reduce my work hours to 4 days per week (I work for a government agency in Australia). My immediate bosses have been great and very supportive. I guess the difficulty is that RA is not obvious to healthy people. It’s such a huge effort to get up and out of bed and off to work everyday. I make a real effort to be positive and helpful to the people I work with which can be really hard when I feel lousy. When I am at work, I work really hard and manage my time well, in fact, working is a great distraction for me. Whilst I’m pleased that my work hrs have been reduced on a “trial”, I am disappointed that I have had to endure patronising remarks from HR representatives of my Dept who ask about RA (and don’t really listen), but then suggest that I take up meditation or eat smaller, more regular meals to help. I was even asked when I’d be better and off the methotrexate and able to workfull time again. I struggled to explain my condition and just wanted to cry and scream at the same time. It is so hard living with RA but it is harder to come to work where no-one really understands or cares.