Category: Updates

  • Rough Times Ahead! Working Oh So Hard At Building Strength!

    So, things aren’t going as smooth as I thought they would. I am definitely on the struggle bus for strength and ability to transfer. I’ve gotten stuck in more places than I chose to share but I cannot say enough good things about the fire department (lift/assist). They have been wonderful in getting me out of unique situations. It is a combination of not enough strength and complete fear of falling and being on the ground. I started with PT yesterday and just need to keep building strength so that I can stand on my own. Once I can stand, all will be fine. In the meantime I am using the transfer board as needed.

    On top of all of this, I am dealing with a crazy amount of thrush in my mouth mostly from the steroids. It’s quite painful and limits how much I want to eat or drink. I have medication, so I am hoping that makes a big difference today.

    I also am almost caught up with my Bible in a Year Podcast- I fell behind while I was in the hospital and it’s a lot to catch back up, but this is happening too! I got so much out of the Rosary in a Year, that I thought I would try the Bible in a Year!

    Then, once I have gained enough strength to stand, I am looking forward to trying out my new Zeen. It has the ability to move me from sit to stand, so that is a good thing and I can even get some exercises done on it.

    I also have a lot of organizing to do and unpacking of some shopping adventures- looking forward to seeing what I was able to get. The biggest adventure for today is to not get stuck anywhere(especially on the toilet) and not end up falling on the floor.

    I GOT THIS!!!

  • Home and Almost Reset! Just Missing a Whole Lot of Strength- But My Heart Is Ready!

    Well I made it home! All safe in my little corner of the world. I even had a wonderful lunch catching up with an old friend, who will hopefully help me find some tutoring gigs too! Even managed to open some packages and get a little organized. Needed the help of lift and assist from the fire department, and they were more than wonderful!

    I was NOT prepared for how weak I actually am now that In am home. I really can’t stand on my own, and terrified of falling. So, it’s back to my “roots” using an old fashioned sliding board to transfer out of bed and into my wheelchair or arm chair. I need to get stronger, but for now, this is going to have to be how it is to be done.

    A huge thanks to my caregiver who with our thoughts together managed a small little shower last night and it made all the difference. I am so bruised up that I hope I heal well.

    Thank goodness I can self catherize anywhere because I really can’t get on or off the toilet right now- TMI sorry-

    It doesn’t help that we are supposed to get a winter storm of sorts, but I guess being stuck in my apartment isn’t the end of the world at all since I am not in the hospital anymore. Unfortunately, I had to cancel facials with my niece because I am not up to it, but I will make it up to her for sure and it will feel even better knowing I did it on my own.

    Today, begins appointments- nurse for resumption of care and hopefully the ENT as well. I ordered an Instacart order and looking forward to some new things to drink. Hopefully, I will also be able to get some organization done too. I also have a newsletter floating out there somewhere too!

    So, I move forward, carefully and intently. Looking forward to working with PT/OT again and being able to transfer without the board and being more independent again. I too will rise again, I have been down before and know what needs to happen. My biggest issue right now is to stay off the floor and in my bed or chair. I have enough new “toys” to play with to keep me busy and not exploring and going places I shouldn’t be going down.

    Other than being just so happy to be home, I am sore- especially where they put my shiny new picc line- its more tunneled than I expected, but it got me home and its able to be used for the necessary IV antibiotics that I need each day to get rid of these major infections- all at the tune of over $3000. No one ever said that chronic illness is cheap!

  • It’s Beyond Time to Get Home and Reset…

    So, I finally got a new picc line– a little different than imagined, but it’s in and I am able to get my IV antibiotics through it as well as my IVIG infusions. I am so thankful for the team in IR this morning that “just made it happen.” Then I got back to my room and my breakfast was waiting for me! All good signs of things to come.

    If I haven’t said it before, chronic illness is expensive. My 3 weeks of IV antibiotics is going to run over $3000 and that’s with excellent insurance. Told them that I was just going to have to make small payments towards that expense.

    My first priority in getting home today is having an amazing lunch with an old friend who we have been playing phone tag for a long time. It will be great to catch up with her. My apartment is going to be a little bit of a mess as I organize my new mobility devices, like my ZEEN. I am hoping the Zeen is really the change I require to gain some strength and independence.

    Tonight will be about showering and organizing a little with one of my caregivers. Hopefully, after a shower tonight and moving around today, I will gain some more strength. I won’t lie, I am very nervous about getting “stuck” on the toilet due to low strength, but it will be what it will be!

    Then it’s back to my regular schedule- newsletter this weekend after taking my niece for facials for her birthday! I have a lot going on at times, and other times, nothing but crickets!

    I have a ton of follow up appointments, and eager to find out what is next for this giant kidney stone. Apparently it needs to get “blasted.”

    All of this will pass as well and then it’s back to getting ready to welcome my service dog. I am hoping the committee meets soon and I am able to schedule a community visit. I really want to see some progress in bringing this game changer to life. My 25 year reunion is in October of 2026 and I am eager to travel back to Baltimore with my new service dog and flying for the first time in 5+ years. BIG things are happening!

    Also on the agenda, is getting back into tutoring- specifically dyslexia tutoring. I have always enjoyed tutoring 1-1 with students. I use the Wilson Reading System and have a lot of materials. Please reach out to me if you have any leads in this direction.