Fiercely Independent Pam

Category: Updates

  • Faith and a Four Legged Friend…

    Faith is believing that what is meant to happen, will happen. I believe in some things so much, that they are true. This is with people, events, and more. Faith can be as big as a warm embrace or as tiny as a single mustard seed and still work out. It’s knowing that certain things have happened, or even will happen. I am full of faith.

    I live my faith as a Catholic. I pray for Mary to intercede for me and clear the clutter in my mind and world. I utilize powerful tools like the Rosary and receiving Jesus in the Eucharist. These streghtn my faith and beliefs, as well as hopefully guiding others to a deeper faith.

    Faith is a funny thing, because on dark days or moment your faith in something or someone can falter causing you to lose faith. Losing faith is a scary thing. I have been through many dark times, where I questioned my faith and felt like I truly “lost it.” A rememdy I have found is my deep devotion to Mary, under the title of “Undoer of Knots.” The simple image of Mother Mary holding a ribbon (symbolic of our life) with both hands, with one side of the ribbon being riddled with knots and the other (after she took care of the ribbon) being smooth and beautiful strikes me every time. I ask Mary to undo the knots of my life and know that through her intercession to the Most Holy Trinity, my life will be smoother and more beautiful.

    I wanted to write about faith because of the events of yesterday. It was a big day! I traveled 2 1/2 hours each way inland to a special place. It was my interview for PAALS, the organization that I am hopefully going to receive my service dog from. It was my first time visiting their facility and I couldn’t be more impressed with what they accomplish.

    After a long and detailed interview, I was treated to interacting with a service dog in training, aptly named, Faith. She was warm, friendly, and full of good dog slobber and simply amazing! I forgot how much I loved kisses from a big slobbering dog! She quickly attended to the task at hand and helped me look good when fumbled through the cues. Then, she quickly and excitedly picked up a pill bottle I “dropped” as well as a tv remote. Both objects were placed directly in my hand. I could tell she loved working for working sake, but the praise of “YES!” and the treat didn’t hurt either! We then walked a short distance and she did great with my walker (despite having not worked with a walker before). She definitely earned a gold star from this teacher.

    It was not until I landed back in the car that the full impact of Faith’s name hit me… I immediately thought of a small decoration that sits in my bathroom featuring Woodstock planting a garden. It simply says, “Faith is for the things that take a while!” I believe this is exactly what this process is teaching me. When I applied to PAALS, I knew the process was going to be long but oh so worth it! I just need to have faith in the process and the end result.

    I won’t bore you with the nitty gritty details that I learned about the process, but there are several more steps to complete before I get to share my bed with a wet -nosed fabulous creature! There will be A LOT of fundraising opportunities and I will be asking for your help in this regard, but I’m not putting the cart before the horse!

    Oh and faith sometimes means rewarding yourself with something special. The trip inland included a stop at the famous Buc-ee’s. I saw these amazing pajamas and treated myself to them to commemorate the amazing day! If you have never stopped at Buc-ee’s before, be prepared to be overwhelmed!

    Christmas/ Dog PJ’s found and bought at Buc-ee’s
    Mary Undoer of Knots

  • Advent/Christmas Celebrations Sprinkled with More Doctor’s Appointments!

    Advent/Christmas Celebrations Sprinkled with More Doctor’s Appointments!

    The rush before the holidays used to be insane for me! When you lead a Catholic School, you literally have to celebrate everything in the month of December and the season of Advent. Saint days, concerts, surprise visits, Santa landing on the roof of the school, the Gingerbread man running off his tray… EVERYTHING! It’s so much fun, but exhausting. I miss it- A LOT! Now that I am living in senior housing, we have a lot of activities for the Christmas season. I am enjoying finding time to share talents with others. It also means a lot of doctor’s appointments in a short amount of time because offices are closed a lot during December for their own activities.

    So, I’ve been busy with appointments. BIG appointments. I feel like I am past the point of going to appointments to survive and now finding ways to thrive and prevent bad things from happening. Yesterday, I had my annual brain MRI for my V/P Shunt and to also take a peek at the pituitary tumor that lives in my brain. The MRI is less than comfortable since they have to not only stick you deep into the MRI machine, but also place a cage like thing over your face and head. It took about forty minutes inside the machine, and really the only thing I ever think of doing is praying.

    Yesterday afternoon, I also had a Telehealth with the Dysautonomia specialist at MUSC (AKA “The Wizard”) He was his kind, understanding, knowledgeable self. We talked about the skin biopsy I did in October, which was very positive at all three sites for small fiber neuropathy. Still trying to learn what all that means. We discussed the need for me to pick up the cardio rehab program again and the frustrations of trying to get the Zeen approved. We changed a few medications to help prevent my blood pressure from bottoming out. He invited me to reach out if I needed anything but scheduled a follw up for spring time.

    Today, I made the trek down to MUSC for two different appointments, with the first starting at 8:30am, so it was an early morning. My first appointment was with an infectious disease doctor who specializes in risk assessments for future surgery. In my case, I was referred to her by an orthopedic surgeon for possible total hip replacement surgery. She had some grim thoughts about complications with the surgery, stating that while the average risk of infection for someone is around 1-1.5%, my risk was near 10%. She had some ideas to mitigate the risk some including nutritional support, blood work, and nasal swabbing all before the surgery. It’s a scary proposition and I have no idea where I land with it all.

    The second doctor’s appointment was my annual appointment with a neurosurgeon about my VP Shunt and IIH. She checked the shunt settings (they didn’t move during the MRI)and also reviewed the MRI. The shunt is doing its job a draining extra spinal fluid away from the brain. We discussed that my recent weight loss and use of a GLP both help reduce the pressure. The next step is my annual torture at the eye center to determine if the optic nerve continues to be affected by the pressure. My hope is that I receive an “all clear” and can stop taking the diamox medication that I hate taking. I have another appointment with a different neurosurgeon soon to review the results of the MRI in regards to the pituitary tumor- which spoilers alert- is growing and secreting hormones at twice the rate it did last year, but that’s a conversation for another day!

    So there it is, a weird brain, high infection risk, and blood pressures that won’t behave. I am beyond a hot mess- and just so complicated. I am so fortunate to have MUSC in my life and their expertise and caring nature fit my needs. It’s just a shame that they are over two hours away and require a small mortgage payment to get there and back.

    Advent is here! We are all counting down the days until we get to meet our Lord in swaddling clothes lying in a manger. It’s exciting enough, I do not need this level of craziness from the medical world.

  • IVIG, Home Health, and Trying to Control Timing!

    Today is my twice a month IVIG infusion. IVIG is used for many different reasons; I use it for my immune system (or lack there of). I have been doing IVIG for about three and a half years. Before this, I used to do my IGG via subq which didn’t involve using a central line or needing a nurse to monitor. Click here for a previous post that explains my Primary Immunodeficiency and treatment plan. All of this involves special planning and timing.

    Today again, I have a substitute nurse, actually I have two nurses because one is shadowing the other. It’s always interesting because nurses have their own ways of doing things. Nothing is wrong or right, just different. I also spent a good part of the morning working and practicing using my fistula.

    Timing is aways something on my mind. I want to keep moving forward, but it is essential that I remember that I do not control time, I have been waiting to use the fistula and get rid of my PICC line for over a full year. Today was another day of being reminded that I do not control time. The plan shifted some, but is still moving forward. I practiced sticking a fake arm and using good technique to secure and then remove the needle. I think I am still on track to have the PICC line pulled around Christmas, which is a BIG deal because it means I can finally break free from using Home Health services.

    Right now, because I have a PICC line and require nursing services from Home Health, I am limited in regard to other things. For example, since I use Home Heath, I am required to use them for PT/OT services, which tend to be not as robust as outpatient services. I also can’t order my urinary catheters through “normal” means because Home Health has to order them. This limits the type of catheters I can use and try. I am eager to stop using Home Health so that I can access other services.

    It’s easy to get frustrated with the timing of things. I want things to work out NOW! I am tired of waiting! Beyond getting rid of Home Heath, getting rid of the PICC line also means being able to shower without a cover on my arm and being able to swim if I want to. I have purchased stickers for my glucose monitor for various holidays that I’m not using because they would be hidden under my PICC sleeve. It might seems like I am whining right now but really I know timing is not in my control. Eventually the PICC line will come out and eventually I’ll meet these goals.