Fiercely Independent Pam

Category: Updates

  • Asthma… The Gift That Keeps Giving!

    It’s been a hot minute since I’ve struggled with my asthma/COPD. I used to have major trouble all the time, but with my IVIG treatments and leaving situations where there were triggers (mainly black mold), my lungs usually cooperate. I am on some heavy duty meds too.

    A few days ago, I started feeling pretty crappy and not really sure what was going on. Sometimes it’s like that and I have to wait and see what “pops up.” This time it was my breathing. Full on struggle bus. wheezing and super tight chest. I broke out my inhaler, nebulizer and even spent sometime on my non-invasive vent. None of which helped enough that I felt comfortable, so to the ER I went.

    To my surprise, they actually were fairly decent about aggressively treating me and hit me with all sorts of things including: breathing treatments, iv steroids, and magnesium. They did a chest x-ray and then a chest ct to rule out any blood clots. I was there for many hours and felt comfortable enough to go home around midnight. I was sent home with higher dose steroids and antibiotics.

    If you have never high dose steroids, you are lucky. They come with a slew of side effects. For example, it’s currently 3am and I am wide awake and wishing for an entire meal to eat. Similarly, I ate more today in a day than I have for 2-3 days. It’s not pretty. The insomnia and hyperactivity is rough too. Add on nebs every 4-6 hours and you are shaking and all over the place. I am not sure how this was ever normal for me, but I appreciate the break while it lasted. At one time, I would end up in the ER overnight, get some treatments and then go to work around 7am and work a full day.

    Now, there are decisions to make. Do I contact my pulmonologist? Do I need more meds. Do I need to go back to the ER if nebs every 4 hours aren’t cutting it. Will they admit me? When will I get sleep? How will this affect the rest of my health problems?

    It’s never easy to deal with chronic illness. There always seems to be something hanging around to take you down. My best advice is to handle it, get the answers to your questions, and fight like hell. It boils down to “Don’t let the hard days win!” My mantra for living. After all, I have survived 100% of my bad days!

  • 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!