Michael- that’s helpful info since my brother in law is going through the same thing. He would never agree to the machine, either.
This morning was a running first for me. I started volunteering with Back on My Feet about 4 months ago and run with them on their 5:45am Friday morning runs. (If you’re not familiar with Back on My Feet, they are an organization that provides services to the homeless including a running program. The idea is to help restore confidence, strength and self-esteem so that individuals are better equipped to move toward jobs and homes. We are partnered with two homeless shelters in the city and our members join BOMF through the programs at the shelters). Many of the people who enter the program start out as walkers and then transition to running. We had a lady join in February who is legally blind. After a month of walking, she wanted to start running this week. I volunteered to be her guide for the Friday runs and this morning was my first time as a guide for a blind runner. I was kind of nervous about it, but it went really well. Since she is just starting, it was a run/walk interval so that helped as we figured it all out. The first and last half mile of the run are on the sidewalks of the busy city streets with lots of obstacles and challenges (parking meters to look out for, lampposts, curb cuts, etc). When we get to the trail there are fewer obstacles and that is easier. But overall it went really well and I’m happy to be doing it. She has a goal of running a 5K this year and I have no doubt that she’ll be ready for it before long.
Michael - so glad that you found an easy way to resolve the sleep apnea issue!
C3Baker- that is awesome and I’m really proud of you for doing that and serving others that way.
Kudos, C3Baker.
That is totally cook C3 and kudos to you for sharing your time and talent. Really, really nice.
Michael, I’m glad you got the test and all that 
C3, that’s awesome. I used to work for the library for the blind and my boss was completely blind. I learned to be a leader and it was a very strange, but rewarding, experience. It makes you realize how many things we take for granted.
I am still having some side effects from the Orencia treatment. Headache, extreme fatigue, achey, and then last night I added heart palpitations to the list. The PA called me this morning and they’re worried about the heart palpitations so now I’m waiting to hear from the doctor. (The rest of the symptoms they said are pretty typical but only happen- generally- the first few treatments).
That’s really wonderful, C3B! What a great way to give back.
Good solution, Michael.
romani–thinking of you through your trials. Hope the pain subsides.
I ran outside for 5 miles yesterday. Today is a walking day. We’re having a gathering for our alma mater soon, and housecleaning with dreaded traditional spring-cleaning tasks such as window washing have commenced. I wish fitbit gave more credit for these domestic duties, lol.
Romani- hang in there. One step at a time. Tell those doctors they better get you straightened out or all your friends from CC will be after them!
Haha thanks guys.
Rheum said he doesn’t think my heart palpitations are related to the meds and to contact my PCP. PCP is concerned that my heart rate is so high and doesn’t think it’s related to my other symptoms. So it’s off to urgent care I go to make sure there’s no infection or heart issues going on.
Part of me feels like a hypochondriac but I guess better safe than sorry. I am still so new to all of this that I don’t know what is “normal,” what’s related to my meds, and what’s something that I should be worrying about.
My mom is here taking care of me this weekend because both of the boys have out-of-town things to do. She’s even more of a worrier than I am so I wouldn’t be able to get away with just letting these things go lol.
Thanks, everyone. Believe me, I am getting more out of this volunteer experience than I am giving.
sabaray - good luck with your 10 Miler tomorrow!
Hoping that @deb922 has been having a great vacation with as little feet problems as possible!
Haha @abasket! I’m having a very nice time. Taking shorter slow walks on the beach and we’ve done some sight seeing. It’s been fun but low key. Florida had been warm and no rain so the weather been great.
Romani, thinking of you.
Hang in there romani. It will take time to reach an equilibrium where you feel like you and your disease have a détente in place. In the meantime, this is all very new to you and you are doing the right thing by being cautious and proactive.
Romani, I am rooting for you, too. As Michael says, it usually takes time for a positive effect to become noticeable. So fingers crossed that your body will start reacting to the treatment in a positive way. Absolutely - there is no harm in checking with a doc if something does not feel right.
Deb, so glad you are having a good time despite the injury!
I’m still in urgent care 3.5 hours later lol. They’ve run an ekg, xrays, etc. Waiting on results.
So bored. So very, very bored haha
Heart’s fine but an infection somewhere so they’ll treat me for that. They think most of the symptoms are related to the infusion treatments.
They also said Lupus is weird and anything and everything may or may not be related to that lol.
Ah well.
Do you feel stressed out because of the uncertainty? Stress can wreak havoc with hearts and BP. Been there, done that… Glad the heart is ok.
Barely made my 10,000 steps, but I did it!!! I want to go back on vacation.
@C3Baker - that is super cool. I have seen blind runners running with an assistant in a couple races I’ve done & Ive wondered how difficult it is to be a guide. There is so much to be aware of - uneven terrain, curb cuts, sign posts, other pedestrians. Kudos to both the runner and the guide! That sounds like a terrific organization too - running for the homeless. Running is the most effective thing I’ve ever done to build confidence & self-esteem.