Chin up - toughen it out, but with balance!
I am new at posting here, but been lurking for a while.
Just figured I'd share some of my story. I'm 28, most likely had RA since I was 13-14, but didn't get diagnosed until I moved to the states 2 years ago. I've used methotrexate and humira with no effect. I'm now currently 2 months in on Orencia. Fingers crossed it will work, no noticeable side effects so that's always a good start Also had a pulmonary embolism in November.
Now back to what I wanted to share: toughen it out, chin up - not always the wisest thing in the world, so remember balance is key.
Some back story: I'm from a home were the motto is "grit your teeth, chin up and toughen it out!" Also: "unless you are bed bound, no excuse!" My mom has RA, and with what I've learned these 2 years of how serious this disease actually is and how it is treated over here I have been questioning "is how mom's treated the norm in my country, or does she just have a crapppy doctor?" And most importantly "how the heck does she manage?" She is being treated with just fysio, ibuprofen and cortisone injections when it gets really bad.
So, in November, I had a 2 day road trip to Vegas from Los Angeles, followed by 3 days of pushing 10 hours of work to make up for the days missed... then my shoulder started to ache more than it usually does on Thursday. Naturally I blame it on RA and over extending myself this week. After one day of running the poor heat pack non-stop I cave and take one of my Norco's.
The next day the pain is worse. So I'm channeling my childhood mantras "pain is just an illusion" and "you're stronger than this". I continue with heat pack, and actually for once follow the every 4-6 hours as needed of my scrip. We are now at Saturday, and I'm mentioning to my husband that my shoulder is really acting up. He offers stretching help and massage...
On Sunday I wake up in pain, it is getting at excruciating levels, I discuss with hubby if we should go to a doctor, as it is a Sunday we figure the best option, only place that could really do much is the ER... So I foolishly decide "I can handle this, I can though it out". Later in the evening I am wondering if that was the best decision after all, as I am feeling a little tight chested. I am now also getting concerned if this really is just the RA.
On Monday I am feeling beyond terrible. We end up at the ER as I am now wheezing when breathing, sounding short of breath and talking feels like someone is stabbing me in the back under the shoulder blade. And laying down, forget about it!
At the ER they do EKG, blood pressure, draw blood and chest X-Ray. All come back clean, can see some inflammation on the wall of my right lung. I get sent home with oxy and ibuprofen 800 mg cocktail, conclusion is that I have unknown pleurisy and that's the root of what felt like shoulder pain. Follow-up with my primary doc on Wednesday.
Wednesday comes and the oxy and ibuprofen 800 mg mix given on Monday is at this point barely taking the worst spike off. I'm having serious trouble breathing. After 2 hours with my doc, she is convinced this is neither just due to RA and it is something more than pleurisy. Back to the ER I go. After hours of more blood tests beeing clean, EKG not saying much, but O2 dropping and racing pulse, they finally do a CT.
Hello there, pulmonary embolism, how did you get there and be so good at hiding... They were actually a little bit excited in addition to concerned, as all the blood work they had done were clean on clotting factors.
I spent 5 days at the hospital, are still on blood thinners and recovering. I scored 100% on my O2 saturation for the first time since the clot last week so it is going the right direction, just slow. They believe the clot is due to increased risk with RA and birth control.
After the PE my RA decided to go into over drive. I'm getting exhausted, and I'm exhausted of being exhausted! How I wish Orencia will work, and work soon. But I do my best to find little positive things to focus on. I also read here, and figured perhaps it could help to share a little in a place where people will understand. I'm tired of the judgemental facial expressions from explaining my shortness of breath from a flight of stairs, as they are basically questioning how someone so young could have arthritis and also PE without it being self inflicted.
What I've learned is that identifying pain when you are in chronic pain is difficult! Is this just RA? Or is this something else? I've also learned that although my upbringing of toughen it out can be handy when you have a disease like this, it could also be potentially life threatening. I've also taken from this, that it is better with one doctor visit or ER visit too many than too few.
But I still do believe that it is good to toughen it out sometimes, as it can be helpful. Like with working, keeping active even on the bad days etc. But balance is key. It is a though thing to balance, what is normal pain? Because, if you ask most people, being in pain isn't normal. How much should I push myself in terms of work and exercise on bad days?
These days I strive for minimum managing 30 hours of work per week, and minimum a walk per day (doesn't have to be long - to the mailbox and back is acceptable) and some light stretching, more on good days. As I know part of why I healed as quick as I did, is because I do have that "toughen it out" stubbornness in me.
So chin up, grit your teeth and toughen it out, but with balance, and do check with a doctor if pain increases more than the usual as it could be something else. And if you see someone walking stairs and heave for their breath at the top, it could be something else than them letting themselves get terribly out of shape.
Ps. Apologize for any grammatical errors there might be, English is my second language.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?