Fiercely Independent Pam

Category: Accessibility

  • 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!!!

  • 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.

  • Infection Invaders: Trying to Stay Together In Light of Many Different Infections!

    So, I’ve been a little trapped here at the hospital. Faced with a large kidney stone, Picc line infection, as well as a pretty bad UTI, I’ve haven’t been feeling the best. I will need several weeks of IV antibiotics at home and hopefully home tomorrow after a new picc line and clear cultures.

    I really hoped to avoid the chaos of all of this, mostly the IV antibiotics because they are both expensive over time and require a lot of attention. Hopefully they will come in the form of the “squeeze ball” and not a pump. Either way in creates a lot of medical trash and organization in dealing with various infections.

    Next, is to figure out how to keep practicing getting up and using my strength to make sure I am still able to get up and down from the toilet and such. This was the final straw why I ended up coming to the hospital, I was unable to get off the toilet and needed lift assistance, well this, and the major infections.

    Finally, I have to figure out what is next with the kidney stone. Apparently, I will have to have it “blasted” to get rid of it, but I was told that shouldn’t be a big deal.

    My biggest focus right now is getting up and being strong enough to get home, as I am feeling the need to get home and organized- I ordered a bunch of stuff, including my Zeen, and want to try it all out!

    Looking through the week, I am excited to have lunch with a friend and then an awesome facial scheduled for my niece’s birthday at the end of the week. I tried to cancel everything else going on in order to organize myself.