A ton has happened since my last life update. Some good, some bad but overall I am doing well. Check out what’s been happening below.
Mom’s gallbladder and hernia surgery
Last October my mom had surgery to repair a hiatal hernia and have her gallbladder removed. The surgery went well and she was home after a day or two. Her recovery was intense because she had to slowly reintroduce solid foods. She was on a clear liquid, then liquid, then soft food diet before being able to return to her regular diet. She was a trooper though. The frustrating part of her recovery is that she’s still learning what she can and can’t eat without issues. This is normal, but definitely tricky. In the long run though it’s for the best that she had this done: the hernia was causing so many other issues and those have mostly resolved.
Lake living
Once my mom was feeling better she and I headed back to our lake house in Camden. We are loving it! Sadly I can’t use the enclosed patio in the winter but that’s okay. We have been having fun going to various community events and shopping for things to decorate / organize. Our neighborhood seems to really want to be a “community” which is fun. They organize community breakfasts and have events like music bingo, and a cornhole tournament. I skipped the cornhole but my parents went and Dad got first place! I’ve also been to the library and a few different restaurants. My parents want to join the local senior center’s fitness center and I want to check out some of the events they hold. Even though it’s labeled as a “senior center” it sounds like they have services that I could benefit from as an adult with disabilities. We’ll see.
I’m excited for us to be able to put our paddle boat and pontoon boats in the water. I hope to be able to go on lots of paddle boat rides with my mom – we love using that time to hangout and talk. It will also be amazing to be able to the enclosed patio again. Our cats love it too; they can see the water and hear the birds and feel the breeze. We call it the “catio” because of this. The catio is a great space for me because I can also see the water but it’s more temperature regulated and no bugs! My favorite thing to do is work on a craft – usually diamond dot painting.
Medicaid coverage issues
At the beginning of February my Medicaid coverage was changed from the Healthy Michigan plan to the Plan First Family Planning plan. This plan doesn’t cover the home and community based services that I need. It also doesn’t cover most of my medications and I’m not sure about appointment copays. Therefore I’ve had to request an appeal, go before an administrative law judge (via Zoom), fill out forms, and provide other pieces of documentation. It’s a frustratingly long process. In the meantime, my new wheelchair delivery was delayed and paychecks for my caregiving hours has been delayed among other things. The “good” news is that the administrative law judge ruled that MDHHS has to re-evaluate my case and determine eligibility for Medicaid coverage through any of the many different programs it runs. For example this could be the Healthy Michigan plan or Freedom to Work. These are the two I’d likely qualify for but we’ll see. I just want coverage that meets my needs.
New wheelchair
Due to confusion surrounding my Medicaid coverage, delivery of my new wheelchair was delayed. I think it was ready sometime in February but I didn’t actually get it until today. It will take a few weeks to get used to the new seating functions and cushions but I’m hopeful this will be a great chair! It seems like there is more flexibility in the seating functions. I’m excited to have anterior tilt – my last chair didn’t have this! I also got a tray this time around which is nice. I hope it will work out well for snacks, reading, or just a little extra support while watching tv in my chair.
My overall health
In general I’ve stayed healthy this winter. This makes me happy, especially considering I’ve been trying to go out and about more frequently. My main health concerns have been seasonal allergy / sinus issues and pain management. Despite being on 3 prescription medications, over the counter NSAIDs / pain relievers and trigger point injections every 3 months or so my pain is usually at a 3 – 4 out of 10 on the pain scale. Sometimes it can get as high as 6 out of 10. I also struggle with fatigue. Some days I have “lots” of energy and other days I need to sleep most of the day. It’s honestly pretty frustrating and annoying. Even on the good days I’m usually in bed by 8 or 8:30pm. My body just gets worn out and I’m more comfortable laying down on my ventilator. I’ve tried staying up while on the mask but I usually fall asleep. It’s okay though; it’s the only way my body can truly rest. The ironic thing is I usually wake up a few times throughout the night so I end up scrolling on my phone for 15-20 minutes at a time while using the mask. Despite these frequent wake-ups during the night I do “okay” during the day. So it is what it is I guess. I’m also dealing with some stomach issues like bloating and distention that we’re working through. I have some things to try and a referral has been placed for a gastroenterology consult. We’ll see…
Summing it all up
So, all in all, it’s been a hectic fall / winter / early spring. But in general I am stable and happy which is all I can really ask for. 🙂
