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I Had a Dream

Last night, I dreamt that I was entered into an NCAA swim race against three other swimmers. Having broken both shoulders, I cannot swim freestyle (crawl) as the other three were, but was swimming the slower breaststroke. When I took second place, I was so happy I cried.

I think this dream is very symbolic of taking pride and joy in what we are still able to do.

#fractures #Exercise #Disability #adapting #Joy


frustration with hearing loss #HearingLoss #frustrations

today it hit me again. .... I am so SICK of pretending to hear someone and saying the word what! I had to do it both with my mom and with my one housemate and staff. I'm just getting tired of it. I dunno why, but my hearing seems to worsen in least temporarily. I don't want to go back to audiology/ent until my yearly appt in Sept. i just want to try to adapt. I'm even trying to get a meditation CD so i can turn it up louder as my phone volume is starting to not be enough. yet in my trying to adapt, I'm getting more and more frustrated since it doesn't seem to be happening as fast as I'd like or the hearing keeps getting worse or both. I can't afford hearing aids and because of that am waiting until the docs insist (I have mild/moderate hearing loss)...heck, I could barely afford my glasses! ah well....ty for reading my vent....I just had to get it out to a community that understands. #HardOfHearing #Vent #adapting


Update #52SmallThings

So, I set goals back in January to get out of my wheelchair this year and get rid of my picc line. It's only April, so I still have two thirds of a year left to do that. My current situation is that any time I stand on my legs I get pain in my shin that feels like my bone is bursting. X-rays haven't shown anything yet, but my doctor fears it might be a stress fracture forming. So I'm having to listen to my body, even if that means using the wheelchair 24/7. As for getting rid of the picc line. It's going to be a long process. My body has depended on fluids, electrolytes, medicines coming through a vein for the past four years. Now I have to slowly wean from those things because my body has to relearn getting nourishment from the things I eat and drink. A home health nurse draws my blood every other week. We base my treatment each week on how i feel and what my labs show.

I tried reconnecting with my community. It didn't go so well. One family showed up for my family game night. Although I was disappointed that more people didn't come, I made the most of the time I had with those who did come. I also started my craft group back up. Three people showed up for it. We did enjoy being together working on a crochet project together.

Things might not be going the way I want them to go, but I'm a warrior and I refuse to give up or back down. I'll just try again and if it doesn't work out, I'll make changes or try something different. I've learned that alternatives always exist.

#52SmallThings #Update #Reconnecting #NeverGiveUp #chronicillnesswarrior #adapting

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Maintaining a sense of normalcy with chronic illness

this post is inspired by @haley-quinn

A few years ago, my perception of a normal day would consist of getting up, going to school, going to sports practices, and spending time with my friends and family.
Now, my definition of normal has changed, and that’s okay. A normal day for me still consists of all of those things, because I am lucky enough to still be able to do most of the things that I was able to do before being diagnosed with a chronic illness, but now my days are so much more. Now my days consist of taking medication, going to doctors appointments, going to get bloodwork done, naps (lots of naps), practicing yoga and mindfulness as a way to cope with chaos, going to therapy, paying attention to the way my body feels, convincing myself to slow down when necessary, trying to build my support system and learning to rely on them when necessary.
My days are so much more complicated than they used to be, but that’s okay. I learned quickly that it felt like I was living in chaos if I wasn’t able to maintain at least some sense of normalcy in my day to day life. So I take the things that I love to do, like making art, being with my pets, spending time with my friends, playing sports, etc. and I enjoy them to the absolute fullest extent every time I get to experience them. I fill myself with so much joy when doing the things I love, and this makes doing the hard things a bit more bearable. When my days are filled with doing the hard things I remind myself how much I really do enjoy my life, and this moment will pass. Life is filled with doing less than desirable things so I figure that it’s best to enjoy the good things a little extra.
It’s okay to change your definition of what is normal if you have to, because your normal can always adapt. Just know that more than anything, you should fill your life with as many wonderful things as you can, even if you are no longer able to do the things you may have once been able to do. Find the things you love that you can do, and soak up every minute of doing them. Hold so much joy from doing those things that it just propels you through all of the bad days.
Lastly, do take time to acknowledge your bad days, because they are important too, but learn to do the things you love despite what misfortune may have been caste upon you. 🌟🦋💓

#ChronicIllness #coping #AutoimmuneDisease #autoimmune #normal #Joy #Waiting #adapting



I started the week really motivated and really having a good clear out but as the week went on things got complicated as I was finding things tough with a few triggering events. I think this has taught me that for me, if I have a day where I'm really motivated then I should/can just get on with more than just the one thing planned for he day depending on the task. That would work for decluttering but I guess not for the ones where I am trying to do something everyday such as stretch when I wake up or spend atleast 10min a day working on mindfulness.
#52SmallThings #Thoughts #adapting