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Dear Kelly,
Once again you have written an article that seems like it’s been written for me and published when I need it most! I don’t know how you do this but I most certainly do appreciate it.
Yesterday I began updating and polishing my skills in the hopes of starting a freelance career (web programming). I have to do this and I have to succeed, there’s really no other choice as I am in desperate need of money, my social security doesn’t come close to making Humira affordable for me; I’ve run the gamut and failed with all the biologics that Medicare does pay for.
My long term goal is to move to a more hospitable climate. I realize that is going to take a lot of work, time and risk so I’m trying to break it into bite-sized pieces with a reward for each piece. I don’t have a support-network of people so I think physical rewards are the best I can do. The first step is the most difficult so the first reward is significant – bluetooth speakers so I can have music in the bedroom where I work from bed with my laptop!
Thank you Kelly, this article is a great help to me and I’ll be re-reading it when I get discouraged!
thank you Martha. I pray you can move closer to your goal this year!
Once again, THANK YOU KELLY! You always seem to hit the nail square on the head, especially when I need some assurance that I/We can get through this. May God Bless you and keep you and Roo safe and well loved.
thank you Darlene. I think it’s because we are walking / struggling down the same road in many ways. I had to think about this post about 3 weeks and finally forced myself to write it out.
Wow, Kelly, what a great post. We just finished up ladies Bible study at my house and I sat down to read email when I saw this post. My word for 2016 is “Shalom”. I will seek it and persure it! God bless you!
thank you Kathryn. What a great store you have!
Hi,
You’re right Kelly. I’ve been a warrior all my life. A misunderstood teen, a US Marine RECON. Always I’ve had a moral compas to guide me. A warrior picks his battles when he can, fights to win and accomplishes his missions. When a fight is brought to you you knuckle down and resist.
RA is the most vicious adversary I’ve ever faced and it’s changed me a lot. I spend more energy avoiding conflicts and stressful stuations now than say ten years ago. But one shouldn’t equate this with a lack of conviction or fortitude. Yes, you need to let the flair so pass before you can move on. And for an Apha Male it’s quite difficult to admit that there’s a disease that can bring you down so effectively.
My perspective has been modified by RA. I’m more thankful for small victories than I was in the past. Like having a completely symptom free week in August. Heaven, I fished, I worked on my woodworking. Slept through the nights! Awesome man. To most this may not sound like all that much to celibate. But as it turns out it was the high point of 2015 and I thank The Lord I was given the break.
To all my RAW friends out there I hope 2016 will be the year that RA/RD are no longer a mystery and a cure is found. Until then I plan to fight the battles I can win, resist the ones I can’t to the dest of my abilities, and to rejoice in the small victories.
God Bless,
-Roger
thank you for taking time to type that Roger. I know it will encourage many.
I love what Roger said about how RA has made him focus on celebrating small victories. I have the same outlook, in fact I started a blog in 2011 called Mom’s Small Victories for that very reason, to celebrate my small victories in life with RA. It’s been an uphill battle but I’m finally at a place where I’ve accepted my new normal and am thriving with it (thanks in large part to finding the right mix of meds). RA is one of the hardest battles I’ve fought but I’m just warrior enough to pull through. Great post, thanks for inspiring so many of us to take charge of our health, both physical and mental.
Thank you, Kelly! I have sero negative inflammatory polyarthritis (???) And hubby has RD. Your blog is a great source of info and encouragement. Bless you!
thank you it’s so good to meet you. keep in touch.
First, I think I’ve only posted one other time here. But I do read through often. Thank you, Kelly, for keeping it going in spite of everything you’re going through – you’re amazing and I truly don’t know how you do it.
I came here for some support today. I got released from the hospital 2 days ago after being admitted through the ER for a pulmonary embolism. I initially had some upper abdominal pain the day after I took my enbrel. It had happened back in November and went away after about 2 days, so I was hoping that would be the case again. Nope. Pain steadily worsened over 3 days and by Jan 4, it hurt when I took a deep breath.
I won’t bore you with all the details, but suffice it to say, I am overwhelmed and freaked out. Any of those days, I could’ve not woken up. Also, and many of you may not under stand, but the drug I have to take now, I had to immediately wean my youngest, which has been heart-breaking for both of us. I am, however, very greatful to be alive. Unfortunately, I feel like I got run over by a truck. This is unlike any fatigue from the RD I’ve ever, ever experienced. So, I’m wondering if any of you out there have experienced this, and if so, how in the world do you cope with this sick, sick feeling? It’s like the RD fatigue didn’t double, it got exponentially HUGE. And I am drowning. And yes, I do have an appt with a therapist in a couple weeks, but I just thought you-all might have some insight. Thank you so much if you made it that far.
Jen
I hope you can get an answer soon Jen. I can only give ideas from what I know about – just 2 cents worth. I’ll type them in case even if they don’t apply to you, maybe another reader.
One, you could check into whether it’s a side effect of a new med or a drug interaction.
2, for me the only thing that intense is fatigue from low thyroid (puts RD fatigue to shame). I’ve had thyroid dz most of my life.
And 3, you didn’t change a steroid dose suddenly did you? Because that can cause adrenal problems that are like what you describe.
btw I had to wean Roo when I was finally diagnosed. They said no more nursing no more babies. It was a hard time. I’m sorry.
Thank you Kelly. I am hypothyroid as well, so I’ll make sure to ask at my follow up appt if they could please check that. A simple solution would be heavenly. My pred dose hasn’t changed dramatically; I went up to 10mg to help “get thru” the week of Christmas and am back at 7. Again, thanks for responding. And yes, the sudden loss of those nursing hormones is not helping things.
I love this article. I was diagnosed with RA, Fibromyalga and Raynauds 3 years ago and have struggled everyday. The one thing that I have found that helps me is to write in a “grateful” journal everyday. It is so easy to give into the pain and get depressed. It just a little reminder everyday of the things I have to be grateful for.
On days that I feel really bad I tell myself its time to “embrace the suck” and make my self get up and get moving. What ever you can do that helps you “fight like a warrior” than that is what you need to do. They key is figuring out what that is.
No matter how silly it sounds find that one thing that will help you… I love to turn on the music and hula hoop it is easy on my joints and it makes me smile.
omygosh Angela. “Embrace the suck” That’s one of my sayings. I come from a military family (far & wide) & I use that one a lot.
You know a Marine wrote a book with that title right?
http://www.amazon.com/gp/product/B00M0P196W/ref=as_li_tl?ie=UTF8&camp=1789&creative=390957&creativeASIN=B00M0P196W&linkCode=as2&tag=rheumarthrwar-20&linkId=O6N6AI427KJLZ6VI
Thanks so much I will have to check that book out 🙂
Dear Roger – My husband is an honorably discharged Marine. I read your reply to him. He says you are being a Marine – you are Improvising, Adapting and Overcoming on a daily (and sometime minute-to-minute) basis! He is biased, of course, but he says “he is almost as brave as you are, Honey.” Knowing Himself, you have just been the recipient of his highest regard.
You have been added to our prayer lists.
God Bless!
Elizabeth Riggs
We’ve all been ill, but I will hope to get back to you to “chat” as soon as energy etc improve…..I have a question, though….I have a photo that I have been wanting to send to you, but I need an address to use….haven ‘t had a chance to get updates on what’s happening in your situation…..sure hope all is better…..our thoughts are still with you! E-mail me an address I can use, and I will either e-mail the photo or snail mail. Hugs! Vi
Hang in there everybody. Don’t let it beat you. I have had ra 14 years and worked a full time job the whole time except when I had wrist fusion and a blood infection from lowered immunity from biologics. I reached remission but have degenerated spine and wrists. I had a wife and children counting on me and could not quit. I am still angry about the anthrax shot that caused or aggravated my RA. I am retired from the military and a eighty percent disabled vet so I actually could afford to lay around the shack but I am encouraging you and I to keep going and do not let this disease stop you from living your life. Be hard headed and get pissed off and keep going! Use your willpower to overcome and pray to GOD to help you do the things you have to do.
Dear Kelly,
Thank you for providing us with a venue that is so informative along with being personal and current. So many blogs let the bloggers take over and it ends up being mostly negative.
I’ve been recently confirmed with RA and a probable overlap of Lupus. Of course we all have had this condition for many months and for some, years. Diagnosis is, ironically, a relief. I am fortunate to have an appointment with Dr. Daniel Wallace in Los Angeles next week for a 2nd opinion and/or transfer or treatment. My mother died with RA, my sister died of MDS, (myelo dysplasia syndrome) and my daughter had ITP as a child. She is now in forced remission via a splenectomy at age 12 She is a healthy 28 year old.
My issue today is that over the years I have helped so many friends, family and neighbors with support for their health issues and otherwise with meals and errands and well wishes. Now it’s my turn and I feel pretty isolated as my disease is more associated with the elderly and does not show itself to the naked eye. There are no meals on my front porch, no cards in my mailbox. Is this common for this condition or is the methotrexate (20mg self injected weekly) and Rayos (5mg at bedtime but weaning off, currently at 2mg nightly) making me ridiculously sensitive? It’s such a fine line between talking about it all the time and becoming the patient socially, or not saying anything at all and feeling somewhat neglected. I actually hate both scenarios. I welcome anyone who has been through this and how they dealt with it.
Thank You for such a uplifting article! It was something I neede to read at this time. It helps me to remind myself not to let my RA control me !! I have been having a lot of flare ups some which are almost debilitating. I have always been strong but lately I’ve been not . As I read the words I thought why am I letting myself be weak ? I thank you for reminding me that I am a Warrior against this disease !!!! Bless you
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Thank you so much, Kelly! Your support means the world to me. I love your strength and your hard work in bringing us more awareness and understanding of this relentless disease. I feel like I’ve lost my life and am so sad and helpless. Your words bring me a sense of community and that there are people who understand our inexplicable fight, a fight that has taken every ounce of my energy. I have been left alone, as many others have, as their family and friends go along with their lives. I’ve been disabled now for 6 years and I feel that days just slip away without me. I have hope and faith in God that He will touch all of us and bring us back to life.