#merryspoonmas

December Spoonie Challenge Day 19 "Awareness collage" Included a bunch, but there's so much more. #JustASpoonful #MerrySpoonmas #SpoonieLivingAp #SpoonieStrong

#JustASpoonful #MerrySpoonmas #DoctorShoutOut

December Spoonie Challenge day 15 "Throwback to a healthier time" Even though I was born a spoonie and have ALWAYS been "sick" or "weaker" there was a time I had a pretty normal life. In high school I greatly enjoyed colorguard! And my job was my life! #JustASpoonful #MerrySpoonmas #Throwback #colorguard #CNA

December Spoonie Challenge Day 14 Warrior Wednesday. Welp I guess what makes me a warrior is that I wasn't supposed to make it to 2 yrs old and I'm 27. I'm also 100% paced which means I'm dependent on my pacemaker. #JustASpoonful #MerrySpoonmas #WarriorWednesday #CHD #Pacemaker

December Spoonie Challenge day 12 "Hospital Selfie" These range from appointment selfies, to surgical procedures, to ICU admissions. Never a dull moment. Thankfully it's been qute awhile since I was admitted! #JustASpoonful #MerrySpoonmas #Hospital

December Spoonie Challenge Day 10. "What's one symptom you wish you could get rid of?" There's a few. The constant exhaustion is high up on my list. The social anxiety is a big one. The brain fog is annoying. But most of all, I wish I could get rid of the pain. People don't understand what it's like to live with pain. It's not "oh I've got a bad back too" or "I have an old shoulder injury that acts up sometimes". It's not "everyone has aches and pains" or "we all experience discomfort". People think you're lying to get meds. But the truth is, we try desperately to get OFF meds. I personally have such a massive fear of being looked at poorly because I occasionally took narcotics that I stopped. Some days I'm very proud of myself, others I don't know what's wrong with me for attempting this. But EVERY DAY I'm in pain. Sometimes it's tolerable with a handful of advil. Others I am curled up in a sobbing ball, nearly screaming in pain. There are times I've thought about going to the ER. But all they'd do is judge me and then give me the meds I'm trying to stay away from. But why? I was never addicted, in fact I never even took it at it's prescribed dose, I held back. I have no family history of addiction. But what I do have is people assuming I want to get high. The media acting like there's no such thing as chronic pain. Family and friends assuming that the pain should be getting better with physical therapy. It doesn't. There's no magic cure out there. The best we can do is manage, and sometimes we can't do that. If you know someone who suffers with chronic pain, please understand that it's not a short term illness that will get better. We are trying our hardest to get through each day as it comes. #JustASpoonful #MerrySpoonmas #ChronicPain

December Spoonie Challenge day 8: Meds. This is a pic of my empties over about a 6 month period. I'm trying to see how much I go through. This includes some supplements as well as meds from when I get sick. My daily meds are: Ritalin, Cymbalta, Gabapentin x2 Cardiazem, Robaxin, turmeric x2, magnesium, fish oil & a multivitamin. As needed: Ativan, Robaxin, Cardiazem, Percocet & Xopenex. #JustASpoonful #MerrySpoonmas #Medication

December Spoonie Challenge day 6. "Flare essentials?" Good timing because I'm currently in a severe flare. These are the things I need within reach. - My snuggling pillow (black) - My RX pillow (Ducks) - My Duck - water bottle - back, shoulder, neck & wrist braces - KT tape - advil, tylenol, benadryl (for sleeping), robaxin (muscle relaxer), lidocaine cream (for pain), magnesium spray (for pain), and if I give in..percocet. - ice pack & heating pad #JustASpoonful #MerrySpoonmas #FlareEssentials