Fiercely Independent Pam

Blog

  • Welcome June… I’ve Been Waiting For You; Good Things Ahead!

    So, it’s finally June. Not that I wanted to rush my birthday month, but there is a lot going on for me in June. Medical appointments, progress on the service dog front, exciting visitors, and hopefully some time at the beach!

    Tomorrow is my first adventure for June. I am headed south to Charleston for an important appointment at MUSC. I will be receiving Botox injections in my bladder to help combat the symptoms I’ve been having. If all goes well, I will continue to get this every couple of months. While I am not looking forward to the procedure itself, I am looking forward to its results. I have heard good things from other’s that have gone down this path. Plus a road trip with my niece is always a fun adventure! I’m looking forward to catching up with her and all of her happenings.

    Next, is BIG! June 10th is a HUGE next step forward with PAALS and the process of getting a service dog. I will welcome the PAALS team (with dog in tow) to my community and apartment. They will be discovering what I need to do to get my space ready for a wet nosed, lovable, smart dog. The team and I will also be doing a community visit; we will be exploring my local grocery store while I interact with the service dog in training that will becoming to visit. After these visits, I am hoping to get my official client letter from PAALS, which will allow me to begin my fundraising and planning. Please send extra good thoughts and prayers my way for this event!

    By mid June, I will be looking forward to welcoming my dear friend and her fiancé. I am excited to spend time with both of them and hopefully get some incredible beach time in. Our only plans are to enjoy each other’s company, get tan, and enjoy the ocean breeze! There is nothing better than being able to simply pickup where you last saw a good friend(in this case its been over 5 years) and enjoy each other’s company.

    Today, in honor of all this coming, I am wearing a new t-shirt that I found- Not only is it featuring the Fraggles from Fraggle Rock, it reads- Powered by Positivity! I absolutely love it!

    There will be more doctor appointments, warm days, and exciting adventures but these are definitely the highlights I am looking forward to!

  • 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!

  • POTS and Dysautonomia: My Daily Buddies and How I Stay Upright!

    I’ve been toying around with this topic for quite some time. POTS/dysautonomia is something I live with on a daily, almost minute to minute basis. It is probably my most debilitating chronic illness I have. The symptoms seem to always be shifting and changing. I have done a lot of research and was intrigued to find out that the symptoms I’ve had since early teenage years that were always blamed on Mitral Valve Prolapse Syndrome, turned out to be dysautonomia issues.

    Looking back, it all started in middle school when I would have issues breathing and often felt faint and/or passed out. I was barely able to participate in gym classes and other exercise was not possible. I was told it was anxiety or all in my head. It was especially bad on hot, humid days. When I look back, I realize all of those symptoms are still with me, but even more pronounced.

    One of my newest symptoms is the switch from always sweating to try to regulate my body temperature to not being able to sweat almost at all. This presents a whole new slew of needs and I find that I overheat more often than ever before, which was a lot to begin with. So, I use fans, cooling pads, and some great things like Dr. Chilly Rings and Chilly Cheeks.

    I have found the best solution is to try to stay as active as possible. Regular exercise, even a short walk makes a difference and allows the symptoms to be much better. There are times that nothing but bed rest works and during these times I have to protect myself from passing out and getting injured.

    Mobility aids are a huge part of my life as they keep me safe from passing out. I use a combination of mobility aids including a large rehab style power wheelchair, rollator, as well as my favorite right now-my Zeen. Often I get asked why I have so many devices, and my usual answer is that my needs change on a regular almost hourly basis. Additionally, not every device is right for the job or needs. I cannot take my large power wheelchair in a car or airplane and I usually need more support than just my rollator. My Zeen is slowly finding its way into rotation, even when I leave my community.

    Other things that I do to help mitigate symptoms is to stay hydrated and add salt to almost everything. The salt keeps my blood pressure high enough that when I stand, it doesn’t bottom out causing me to pass out. I have tried a lot of different products, but my favorite is Buoy Drops. They can be added to almost any drinks; sometimes they change the taste, but they do work. I also take medications to keep my heart rate lower than it naturally runs (I have a rapid heart rate)and sometimes take other medications that raise my blood pressure as well.

    In addition to medications, salt, and mobility devices, I depend on compression products to help prevent blood pooling. I have decided that if I have to wear compression socks, I’m going to make the most of it, so I wear great socks, mostly from Crazy Compression, but I wear others as well. It’s become a little bit of an obsession and I love finding fun pairs. I try to post pics of new socks as much as possible. I also wear Jelliebend compression sleeves for my abdomen, which has the added benefit of helping my hip pain. These are not your usual uncomfortable abdominal binders but a wonderful material that is friendly to people with sensitivities to seems and such.

    There is nothing scarier than having a racing heart, passing out, or not knowing what is going to happen next. It is a constant battle of “Is this symptom new and needs to be addressed or is it something I just have to learn to deal with.” It has been said that POTS/Dysautonomia has the impact on your health in a very similar was congestive heart failure does. Meaning that it becomes a very large part of your world.

    I have learned to make the best of my diagnosis and take the lessons it teaches me to heart. Sometimes that means slowing down, sometimes it means sucking it up and getting out there to exercise, and other times it means to simply Let God do his thing. I am not sure what will be next in this adventure, but I am ready and I know the next steps will include a wonderful four legged service dog to help.

    For now… I will remain positive, but continue to take the time my body needs to keep going strong…

    a back view of my power wheelchair- is decorated with various stickers of places I've traveled, characters I love, and more