Fiercely Independent Pam

Tag: PAALS

  • A Busy Week of Ups and Downs and LOTS of Appointments!

    Spoiler alert- LOTS going on! This week was full of twists, turns, and appointments. Some good news, some complications, and of course a lot of smiles!

    Monday brought me to my second home, MUSC, for an appointment with a spinal specialist to determine what, if anything, can be done for my back and neck. It also served as a follow up on my L1 compression fracture. The doctor was excellent and had some ideas for all of my issues. He recommended a kyphoplasty for the fracture since, while it is still stable, it’s not healing well. If it is going to happen, it will be done at the main hospital by interventional radiology, but a consultation is necessary.

    Monday also brought an unexpected ER visit upon the guidance of my home health nurse. The hematoma that I ended up with at my last hospital visit was looking bad and angry. The ER wasn’t super helpful but I managed to get an antibiotic as well as a referral for wound care.

    Tuesday was a day of appointments at home. I had PT, OT and an appointment with my medical advocate. I also had a GREAT conversation with PAALS about next steps in regards of “my” service/assistance dog. I am ecstatic to see what the future holds for this area of my life!

    Wednesday was a self-care day! I had my hair cut and colored by my favorite stylist, Amanda. I shared her a smile from Seeds of Happiness with her and she was super excited to share it with her son! I also made a TON of phone calls trying to catch up with scheduling new appointments and follow ups.

    Thursday was a tough day, I really struggled to get up and shower, needing to sleep for two hours afterwards. I had an appointment in the afternoon with the nurse practitioner at my pulmonologist’s office. The appointment was intended to be a follow up for the nodule that was discovered on my lung and the follow up CT scan. The nodule couldn’t been seen because the scan showed pneumonia. I was put on an additional antibiotic (my third), nebs, and Musinex. The bright spot of the day was getting to see my nephew when my sister in law drove me home.

    Friday afternoon was my long-awaited wound care appointment. I didn’t know what to expect and what would happen moving forward. I had a 1pm appointment and was taken right back. The nurse who started the process was amazing! She took my complicated medical history, examined my wound, and set me up for the doctor. Then, the doctor decided that the wound needed a full debridement. This process was probably one of the most painful experiences I have had despite the use of lidocaine. It was miserable, but necessary. He also recommended the use of a wound vac (to be started at my appointment next week). I will visit the wound care clinic weekly for the foreseeable future and then home health will touch base weekly as well.

    Unfortunately, this week made me cancel a lot of plans because of not feeling well. I hate that sometimes it comes across as flaky. I hate even more that I miss out on good things. I used to say that at some point this will pass, but I’m not thinking that will happen. Until then, I will keep smiling, hoping, and praying!

    Me and Amanda sharing a Seeds of Happiness smile!

  • Paying the Price of a Fun Time: How Chronic Illness Always Wins!

    Chronic illness’ worst feature is that it ALWAYS shows up! Somedays you think you have outsmarted it and you got away with something, but payback stinks! I had a super busy and rewarding week. Besides my awesome PAALS visit, I had doctor’s appointments, tech classes, and some family/friends time. Now I am “paying” for it! I hate this.

    For the last 2 1/2-3 weeks I’ve been dealing with some nasty GI issues. I am not quite sure what is going on, but having trouble keeping food down after I eat, regardless of what I eat and dealing with some major abdominal pain. So far we know my platelets are low and my liver enzymes are super high and increasing. Additionally, my spleen is also enlarged. CT hasn’t shown any blockages or anything surgical, which is good since all my major disposable organs are gone!

    I have been working with an awesome, old school type GI doctor who has ordered a huge outpatient workup, but scheduling these tests in a timely manner has been difficult. Yesterday, I drew a line in the sand and decided something had to give. The pain was making me miserable.

    So, I am back at the hospital, trying to find some answers while they help manage the pain and nausea. I would be lying if if didn’t admit that I am nervous that this might go the direction I was going in several years ago, when I ended up with a PEG tube for feeding. That continues to be one of the hardest medical journeys I have taken. I just keep reminding myself that this is most likely something different and that is not the path we are on.

    I am thankful they admitted me this time. I need some answers and some relief. For now, I am resting and trying to get a hold of this stupid pain.

    I’ll be in touch with updates!

  • Wet Noses In My Apartment: A Visit From PAALS- We are Getting Closer!

    Today was a BIG day! I moved forward two steps in my process to attain/befriend a service dog through PAALS. I continue to be SO impressed with PAALS and all they seek to accomplish. I waited a long time for this day to come and I am so excited to share my wonderful experience. My day didn’t start out that great, as I really struggled this morning to get going. My body is dragging and I know that is because of my recent GI issues but boy, did it take a lot to get going.

    Once I got myself ready, dressed, and took another nap, I headed over to the Food Lion grocery store that I usually shop at and met up with 2 great ladies from PAALS and a beautiful, kind, and sweet dog named Monahota. She was AMAZING! We traveled around the store where she (and I) were able to learn about using my power wheelchair, hands free leash, and giving cues. She was a quick learner and made me look good despite fumbling with the right words, or forgetting to pass her treats on the side and not in front of me. She seemed proud of her abilities and confident, which I loved! It’s important to note that Monahota was brought today for her skills, and while she could potentially be my eventual dog, a process exists to select the best dog for my needs.

    I shared some of my concerns/ troubles at the grocery store (mainly the stupid refrigerator doors that make my trips extra hard) and we brainstormed some ideas to make have a dog support my goals. Monahota was also eager to show me how she likes to pick up objects and be helpful. From the grocery store we walked back to my community and even crossed the major street, she continued to shine!

    Once we were all back in the community, we walked past the dining room full of residents who were eager to see Monahota and she was very aware that everyone was “checking her out!” We then went to my apartment where she was amazingly well behaved and stay in a “down” position for the most part of the visit. My little apartment fared well, but I need to find some space for a large crate. Good thing I have help coming!

    Pictures were taken of my apartment to help with training and to give the committee a better idea of where a dog would be living. The entire time we were moving about the apartment, dear Monahota, stayed in her down position and didn’t make a peep. That is going to take some time to get used to.

    After some time, the delegation from PAALS left and began their travels back to Columbia! The next steps include the committee meeting, fundraising, speed dating to find the best pairing, and then some intensive training. Patience is going to continue to be the name of the game as this process is going to continue to take time. I recently made a bracelet that simply reads, “God’s Timing” and that is exactly what it is all about!

    I am confident that things will work out as they are supposed to and when they are supposed to, but in the meantime, please feel free to say a few prayers that I can keep the faith in this time of waiting. I also know that Monahota is going to live an amazing life transforming a person’s whole being!

    Stay tuned for the next chapter!