Blog

  • Medical Appointments: Keeping Them Organized and Finding Ways to Get There!

    I average 5-12 medical appointments a week. This includes home health nursing, tele-healths, traditional appointments with specialists, and therapy appointments. It’s a big time commitment to attend all of these appointments as well as keeping them all organized.

    To stay organized, I use the calendar on the phone/computer as well as a google docs file that includes any appointments outside of my apartment. The file contains the date/time, provider’s name, address, phone number, as well as a place for transportation notes. I find this file so necessary, as sometimes I need to print or send a copy of upcoming appointments to various providers. I have even started to color code some items on the sheet. The bonus of having it as a google doc is that I am able to share it with various people (family) and they can see any changes or updates.

    Transportation is the biggest issue for me to get to appointments. I try to make local appointments on Tuesday or Thursday when the bus is available through my community for appointments. MUSC appointments require the most resources as I need to coordinate them with either my niece, private transportation company, or using UBER. All are expensive options. All of this also requires me to determine what mobility device I am going to use. If I wake up to go to MUSC with my rollator and feel terrible, I am stuck and can’t switch to my power wheelchair. It’s a lot of thoughts.

    Transportation is a huge hindrance to many people’s access to heath care. If you can’t leave your house, you are significantly limited to the type of health care or quality of health care you receive. Likewise, when you are limited by milage or transportation routes, you become limited.

    I am eager to see my Medicaid application be approved and provide needed support for transportation as well as other things. This process for application was very extensive and difficult. I am hopeful that the results will be worth it!

  • Holding it All Together- Not So Pretty, But Getting the Job Done!

    Have you ever had that kinda morning? The one that makes you think you should just run back under the covers? That was me this morning! So much happened, I’m not quite sure I will remember it all!

    Yesterday, my power wheelchair began randomly shutting off and jerking me forward in the process. I thought it was the connections and put new tape on the this morning to keep them together better. Then I charged the wheelchair. When I removed the charger and turned it back on, I got nada! No power at all. Meaning I didn’t have use of the most useful item in my apartment! I managed to finish my morning routine with my walker. I also made a phone call to the wheelchair company to have them call me as soon as possible!

    Next on the list was that my deposit that was supposed to come through to my bank account did not. Another phone call and figured out I added an extra digit to my account number by mistake! Could take up to a week to work out! Great!

    The shining spot of the morning was physical therapy where I made it 2 laps (1/2 mile) around the building in my Zeen and felt great! I created a new goal- 1 mile (4 laps) by my birthday (May 19th). This will be a HUGE accomplishment!

    Then the hits kept coming… I went to lunch using my walker and transferred to a regular chair. That went ok, but I had to stop several times walking back to my apartment because I was lightheaded and dizzy. Also, the wheelchair repair guy is booked for the remainder of the day and unable to get to my wheelchair until tomorrow afternoon.

    Tomorrow I was scheduled to have my fistula looked at through a special procedure in the OR at MUSC in Charleston. I say was because I found out that I got bumped until next week, but I guess that is still better than going there and then getting bumped! Now I’m scheduled for a 6:30am arrival! Ugh!

    So, here is where I stand: deposit coming in tomorrow, wheelchair repair tomorrow (hopefully this will not wipe out my deposit), fistula procedure next Thursday, thinking I am going to challenge myself and take my Zeen to dinner.

    Days like this is a sign to give yourself some grace. Not wallowing in self-pity, but recognizing that you are holding on with tape (and hopefully a prayer or two). I will proceed gently with myself and laugh through the unplanned moments. This is what we are called to do!

    A goose riding a scooter with duct tape- it reads "keeping it together with tape and denial"
  • Some Setbacks, but Mostly Progress…

    It’s amazing how fast we can take advantage of things. Three weeks ago I was barely able to stand or walk and now I get up like nothing happened. I don’t want to forget all the hard work I put in to get where I am now, but it’s amazing how fast you do forget how hard it was.

    Besides my recent fall, I’ve been doing super well and exercising on a regular basis. The fall left me severely bruised (especially on my bottom) so I am taking a break from the Zeen for a couple of days.

    Today I am headed to the rheumatologist for a check-in. He is another great doctor on my team, it helps that I taught his kids and always enjoyed talking with him.

    Yesterday, I spent some time repotting some plants and loved being able to do that. My life as a plant mom is awesome, I really enjoy seeing my plants grow. I have a few more to repot but that will come in time too.

    As I look back at all I’ve accomplished in the past month, I am so proud of myself and grateful for the support of my readers, friends, and family. Hopefully things will even out for a while and I will be able to accomplish even more!