Fiercely Independent Pam

Category: Health

  • 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!

  • Anxiously Waiting for Lots of Things!How Not to Go Crazy in the Meantime!

    Currently I am cooking on multiple burners- lots going on and all need my attention. I love being busy and have always found that I do better the busier I am. I am moving in lots of different directions and all are super exciting.

    Now that summertime is here, doctor’s appointments and medical stuff seems to be slowing down, which is always appreciated. I am dealing with some major GI issues and find myself having a hard time keeping food down. The GI doctor believes it may have something to do with my liver and has ordered numerous tests to look into this theory. Other than that, my appointments are finally slowing down.

    I have decided to apply for a job as a math tutor. I am not sure what will come of it and how long I will be able to keep it up, but money is tight and I need to do something. Plus there is an opportunity to get Medicaid faster if I have a job. I really need these benefits, especially the transportation allowances.

    Additionally, I am working up a business plan for Fiercely Independent Pam and have the wonderful guidance of someone who knows what she is doing. All of this is very exciting, even if I am in uncharted waters.

    Finally, Wednesday is my BIG day for my service dog. I will be welcoming a delegation from PAALS here in my community. They will be conducting a home visit/inspection as well as a community visit. The most exciting part is that they will be bringing a dog to help with these tasks. Having a dog visiting my apartment is a huge step forward in this process. I am super excited!

    So, how does my anxiety stay controlled through all of this? On a wing and a prayer! Quite literally!! I recently ordered a new bracelet that reads- “God’s Timing.” This will remind me that it is all in His name and timing, not my own. This also means believing that His timing is perfect and not to question it. My Bible in a Year podcast is helping a lot as well. It keeps me focused and is a great way to start the day each morning. I am working hard to bring the Rosary back into my prayer time as well.

    A small sticker or a service dog wearing a PAALS cape!

  • 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!