Fiercely Independent Pam

Author: Pamela

  • Hop on The Struggle Bus…

    I’m having a “moment” just frustrating not much more. Between my new lumbar fracture and beautiful back brace to wear, budget concerns, and not feeling my best, I want nothing more than to stay positive, but sometimes it’s a hard thing to do. I did decide to come outside and chill out with my plants and flowers on my patio.

    Have you ever felt just so overwhelmed that you’re not sure what to do? I have found that doing nothing is the worst thing, so I always try to find some sunlight and nature to ground me. I am so fortunate to have a wonderful patio that allows me to reconnect with nature.

    I know today’s struggle bus is brought on from a great night last night. I went to our local minor league baseball game for my nephew’s birthday party. Watching the game, the bat dog, and my family enjoying each other was great. Climbing stairs, being out late, and eating junk, not as great. I am taking it easy today and resting when my body says so. With much luck I will be back to myself in the morning.

    Besides grounding myself with nature, I have found that there is always something good to be thankful for. Today, I am thankful for my new wheelchair cushion. It’s pretty fancy and with any luck will stop me from having any new pressure sores. The best part is that it was actually covered by Medicare so I didn’t have to cut into my already tight budget.

    I am thinking of launching something new, and that is also taking up energy in my mind. More details on that to come… for now, trying to stay positive and grounded to what really matters!

  • Here We Go Again: If Only My Body Behaved Itself!

    So, this week was already filled with surgery, appointments, infusions, then I landed in the ER followed by an admission to the hospital! All in the exciting life and times of my body.

    Bright and early Monday morning, I was down at my home away from home, MUSC for a fistula gram. All went well, I got a good nap thanks to anesthesia and the fistula was “ballooned out” and back in working order. I may need follow up work on it, but for now its already looking better.

    All was going ok, but Tuesday brought a slew of issues later in the day. I was just feeling “off” I hate when I say that because I know it’s not really helpful. I often say things like “Something just isn’t right.” Nine out of ten times, something pops later on and it all makes sense. My vision was funky in my left eye and I had a top 10% headache. By 8 o’clock at night, I knew I better go get checked out. So to the ER I went!

    Then of course I heard the bad news that I was assigned a “hall bed”- the worse place to be with a tough headache and light sensitivity, but in the end is was worth it because the doctors admitted me right away and I landed in a room upstairs with little fanfare.

    Things went well, the neurologist was in bright and early and made some medication changes to see if they would help. I also was finally able to get some relief from the headaches. I did however start to notice that my blood pressure was quickly creeping up to a place I wasn’t comfortable with. When I asked the nurse, she dismissed it as anxiety- multiple times. I hate that! When I am anxious, I am aware and will say that I’m anxious, but when I am not and my blood pressure is increasing, please help me! So, by midnight, my blood pressure was in the 200/100’s and they finally treated it!

    Why can healthcare providers decide that they know what is going on more than a patient? I trust providers, but I also need them to trust me and my experiences. Either way I am just glad I made it home today, and despite needing to make follow up appointments, I can get back to living my life again!

    A picture of my raised flower bed with a bright red amaryllis blooming and other plants.
    A picture of my awesome raised flower bed!

  • Is It Really Already May?

    I have been trying to get to MUSC for my AV Fistula because it’s looking and feeling kinda funky. There is a bulge that has never been there before and its “thrill” has gotten much more powerful. It was scheduled 2 weeks ago and got bumped off the OR schedule. Then I was scheduled for this past Thursday, and the surgeon wasn’t available, now I am scheduled for Monday morning. The procedure has to be done in the OR, but no cutting is taking place(supposedly). I am not feeling the best about this and not confident in a good outcome. Just my gut feeling.

    Then, there is the issue of the giant cell arteritis diagnosis- I have had symptoms since December when I was evaluated in the hospital but they decided to not do a biopsy because I was younger than the average age. When I saw my rheumatologist, he had the biopsy scheduled for the next day. The biopsy was negative, but my rheumatologist doesn’t trust the findings because so much time passed before having it done and during that time, I was on high dose decadron. So, I started infusion treatments and continued to take steroids. I still have the odd headaches around that area, so I am now going for an angiogram CT this week.

    Also up this week, but I might reschedule, is an appointment with the vestibular ENT at MUSC. He, besides being the genius who found my canal dehiscence and performed my craniotomy, is treating me for some intense ear pain caused by nerve issues. He is a wonderful doctor and always tells me straight on what is going on and what I need to do!

    For the most part, I am feeling pretty good these days. I feel that my strength has returned to my “normal” but I am still struggling with my balance. When I am able to hold on to something while walking, I am fine, but unassisted, I walk like I am drunk. My Zeen has been amazing and today I managed to walk a mile with it. Now I would like to build to walking the mile without breaks. Yesterday, I rode the NuStep bike for 25 minutes and gradually adding more time.

    My blood pressure is running super low again these days. I have gone back on medication to bring my blood pressure up to just above normal so that when it drops as I stand, it is still high enough to support me. I am struggling to maintain this after a large meal, since the blood pools more in my stomach for digestion. I have for multiple reasons, try to avoid heavy or larger meals as much as I can.

    Despite gaining and losing the same 5 pounds for the last month, I am closing in on the 100 pound mark of weight loss. I am very proud of myself for accomplishing this and hope it truly benefits my health. My biggest frustration is realizing I don’t have a lot of clothing to wear and that I have to go through my drawers and closets to remove bigger sizes.

    In non-health news, I continue to keep myself busy here in the community. I create and distribute a monthly newsletter that includes previews of upcoming events, tips/tricks, pictures of previous events, and more! The residents seem to really enjoy receiving it each month. I am still offering technology help. I absolutely love doing this and have helped residents do everything from make their first phone call with a cell phone to learning how to play their favorite game on their tablet. I get paid in all sorts of ways including M&M’s!

    Things are progressing well on the service dog front as well. The biggest update to share is that the next 2 steps will take place on June 10th. Folks from the client applicant committee of PAALS will be visiting me to see my apartment and the facility as a whole. The other step is considered a community assessment and for that I get to interact with one of the wonderful dogs in training at the grocery store! Both parts of this visit will be exciting! Hopefully, all will go well and I can officially become a client. This would then start my fundraising process to cover the expenses of Team Training. The process is long and requires patience, but I am beyond happy giving the time knowing that something amazing will come from it.

    May is a great month- always busy, always wonderful! I get to celebrate my birthday again and the weather never disappoints. With a prayer, some hard work, and patience, I will see the fruits of my labor and trust.