For those of you who are not on Twitter, I've decided to include my #ChronicMom tweets here so you can take a peek into 48 hours in the life of a mom with a chronic illness!!
February 3, 2015:
6:43PM: Whatever happens tomorrow please don't let my honesty discourage you. Being a #ChronicMom IS hard but also awesome!
February 4, 2015:
6:25AM: Baby crying & I hurt too much to even move. Hubby changes him & brings him to snuggle. Mornings can be hard. Baby smiles help.
6:37AM: Hubby walks our dog before work so the poor love can get some exercise. It's too much for me most days. And today it's snowing.
7:03AM: 2yo's up. His cough is worse. Sweetly asks me to carry him downstairs. I somehow manage his 30lb. Then go back up for 20lb 6mo.
7:10AM: Feeding sick 2yo = more challenge than usual. I put protein powder in his sippy so I don't end up with a hangry toddler.
7:19AM: 2yo barfed all over couch. I'm cleaning him, cleaning couch. Haven't eaten anything so no pain meds yet. Going to be a long day.
7:40AM: Baby crying. I gobble a granola bar while heating his bottle so I can take a pain pill. Prescription almost gone = problem.
7:47AM: 2yo who just barfed milk now crying since I won't give him more milk. Heaven help me it's not even 9am.
8:00AM: Trying to put baby down for a nap. 2yo comes up to scream for milk. Now they're both screaming. I'm the one who needs a nap!!
8:12AM: Baby asleep. 2yo watching Daniel Tiger. I finally get to eat some breakfast and email my rheumy for pain med refill.
8:28AM: "When something seems bad, turn it around, and find something good!" Thanks for the reminder Daniel Tiger!!
8:39AM: Crockpot = THE BEST. Prep meals when up for it, grab from freezer when not. It's a rough morning but dinner will be ready!
8:48AM: Changing a poopy diaper with sore hands/wrists/fingers can be really challenging - especially with a wiggler!
8:58AM: iPad for 2yo + crinkle book for 6mo = shower for mama! Hot water helps my pain & being lean makes me feel more human
9:04AM: Between managing my health & raising 2 babies I literally can't remember the last time I had a haircut. Into a ponytail again!
9:25AM: Granny is here!! Reinforcements! I am so so lucky that my mom lives nearby!
9:43AM: Baby is rolling all around the floor & trying to crawl. Soon I'll have 2 on the go and then I'll really be in trouble!
10:09AM: I decide the barfing resulted from cough meds on empty stomach. I give in to incessant whining and give 2yo milk. Pray for me!
10:21AM: Pancakes = great for hiding nutrients: kale/chard, protein powder, coconut oil. I make a big batch to heat up all week.
10:25AM: Put lid on bottle to mix formula. Can't get it off again. Baby screaming. Yay for jar openers!
10:37AM: Good news: dr approved refill. Bad news: new law requires me to pickup & hand deliver paper script. I have 2 kids. It's snowing.
10:58AM: Sometimes I think 75% of motherhood is laundry. Hurts my hands to move the wet and fold the dry, but it's gotta get done!
11:05AM: 2yo has a fever. I take immunosuppressants. How to care for him without exposing my compromised immune system? It's no easy task.
11:08AM: Four loads of laundry to fold and my hands are killing me. Time to try some prescription anti inflammatory meds.
11:29AM: Both kids are miraculously napping at the same time!! I'm getting off my feet for a bit!
12:24AM: Baby's up. He chews a teether and coos while I eat my lunch of vegetable soup. It makes me happy. ~;o)
1:21PM: Hate needing pain meds just to function. After pharmacy battle I hope the Orencia actually arrives today - and I hope it works.
2:44PM: 2yo up from nap. 100 buckles later everyone is loaded in the car to run errands. Exhausted & we haven't left the house yet.
3:25PM: Drive 10+ miles to drs office. Load up double stroller. Haul kids thru snow to pick up a piece of paper.
3:55PM: I love bulk cooking! Made 6 meatloafs Sun & just took one to a mom w/ a 9 day old baby. All mamas deserve support!!
4:40PM: Drove to pharmacy. People are getting off work and parking is crowded. I use my handicap placard. It always makes me feel guilty.
4:42PM: Load up double stroller. Haul kids thru snow to hand-deliver paper. 30 mins. I'll have to come back tomorrow. This system sucks.
4:57PM: Finally home. Dinner smells awesome. Don't think I could survive without my crockpot.
5:01PM: The Orencia arrived! Took Enbrel yesterday so I can't start until next week but at least I have it now!!
5:03PM: 2yo: What's in the box mommy?
Me: Mommy's medicine
2yo: You have a lot of medicine
Me: Yeah, buddy, I sure do
6:18PM: Dinner done. Kitchen clean. Hubby makes me an Epsom salt bath and I get a gloriious 30 min to myself!
6:58PM: After my solo soak my sons get in the tub with me. Bubbles and giggles, splashes and smiles. often my favorite part of the day!
7:14PM: Every day when I give my baby his last bottle I miss breastfeeding him. But without RA meds I wouldn't even be able to hold him.
7:31PM: Hubby rubbing icy hot on my leg to try to relieve the intense pain in my left ankle. He's the best.
February 5, 2015:
6:22AM: One benefit of not breastfeeding: hubby can do 3am feedings so I can take meds to help me sleep through the pain.
6:30AM: 6mo weighs 21lb. He's so smiley in the mornings - but lifting him hurts so much I want to cry. I hope the new meds help soon
6:56AM: Woke with a headache. Usually means (TMI) I'm getting my period. Because what I really need is a few more reasons to feel yucky!
7:19AM: First baby didn't crawl till he was 11mo. Second baby looks determined to do it today!! I think I'm in trouble!
7:37AM: Had to cancel regular playdate due to 2yo's cough/fever. Now face w/ figuring out how to entertain them all morning on my own.
7:46AM: Things I want my sons to learn from having a mom with RA: http://rheumatoidarthritis.net/living/things-i-want-my-sons-to-learn/
9:56AM: Baby napping. Sick 2yo watching excessive amounts of Daniel Tiger. Mommy working but hands hurt so typing/mousing is hard
12:09PM: 2yo napping. Baby up. It's like whack-a-mole around here. Everyone gets a nap but me!!
12:31PM: Granny comes to watch the boys so I can swim. I don't feel like going (pain/headache) but I know how lucky I am so I go anyways
1:18PM: I swim 30 laps & tread water for 5min. Nothing like my water polo days (when I LIVED in the pool) but it's something!
1:29PM: Feeling spoiled to pick up my pain meds w/out my double stroller entourage. Only took 3 trips & 2 days to get my refill haha
2:11PM: Problem w/ exercise: now I'm exhausted & on my own w/ two kids until hubby gets home. Deep breaths (& likely more Daniel Tiger)
2:23PM: No matter what kind of mom you are, you will at some point find yourself literally up to your elbows in poop.
2:51PM: Babywearing: a useful took for calming a fussy baby with less strain on your hands/wrists
2:53PM: At least he stopped crying!
3:38PM: Nutrition trick: green cubes! Steam, puree, and freeze chard/kale/greens. 30min work = easy nutrition!
3:39PM: I add green cubes to EVERYTHING! Sauces, soups, ground meat, pancakes, muffins...nutrients for my whole family!
4:37PM: 2yo makes Lego tower. 6mo spits up on it. Mommy pries it apart to clean nooks & crannies w/ sore fingers ::sigh::
5:25PM: Made delicious taco salad for dinner. Sadly it doesn't go too well with jaw pain.
6:40PM: Getting the kiddos to bed so I can take part in a conference call with Seth's 50 State Network http://www.ghlf.org/seths-50-state-network/
8:05PM: Share your story!! You might be able to influence healthcare legislation! (COSenate passed SB71 today!)
8:09PM: If you are a #ChronicMom (or want to become one) reach out to us!! It's a hard job but you don't have to do it alone! Thanks for following!