Fiercely Independent Pam

Tag: Invisible diseases

  • Chronic Illness and Missing Out on the Good Things!

    Chronic Illness and Missing Out on the Good Things!

    So, my medical issues caught up with my social life, again… Chronic illness means that sometimes, often, you miss out on great things.

    Today is my niece’s high school graduation party. The one she planned herself and I am so proud of the young adult she is becoming. She has her mind focused, Jesus in her heart, and BIG plans for the future. She is one of the big reasons I live here, I want to be part of their lives and watch them grow.

    Over the last week, I was hospitalized for six days. I’m dealing with some major GI issues and still on a pretty restrictive diet. That coupled with the heat/humidity is a recipe for disaster and the last thing I would want to do is take attention away from her on the big day by needing medical attention. All of this to say, I will be staying home and not attending.

    Being a grown-up means making decisions that are in your best interest as well as the best interest of those you care about. Its not about what is the most fun or doing what you want all the time and that tends to be one of the hardest pills to swallow with chronic illness. I can deal with the procedures, doctor appointments, medicine’s side effects, and more, but missing out on the BIG things is just so hard.

    I know that my niece and the rest of the family understands- they are great about it, but it doesn’t make my disappointment any easier. I will find another way to celebrate my niece (in air-conditioning)and life will move along. I will eventually just chalk this up to my life right now and realize that making the right choice is always the better choice.

    I hate sounding so “down” and I really am not. I just think it’s important to point out that everything isn’t always sunshine and rainbows! Chronic illness is a hard thing to battle every moment. You are juggling so many different things and every day, or even every hour is different. You just never know what is going to happen. So, my fellow chronic illness fighters- keep the faith and good fight. For my family and friends- thank you for your understanding and knowing its not about what I want to do.

  • Home Again and it Feels So Good!

    Success! I’ve been home for almost 48 hours, which these days is a record for me! I am absolutely exhausted but getting back into a routine and good sleep are helping. The true test will be tomorrow when I resume my technology offerings here in my community.

    I find routine the number one thing I can do to stay healthy and on track. I try to get to bed around the same time each night, an early 9ish and get up around 6:30 or so. Sometimes I need to go back to bed in the morning and restart again, but I try to stay out of my bed during the day.

    One of the greatest purchases I have made for the purpose of good sleep habits at home is my light/fan fixture. It’s an enclosed ceiling fan and led light combination. I have several light modes such as night, casual, reading, and work. In the morning I usually set it for work, which is quite bright, during the day if I need it on, I set it for casual. While getting ready for bed, I set it on night, which helps a lot.

    Other things that help set the mood include blue blocking readers (I use during the day as well as getting ready for bed). Trying to stay off my phone(this one is hard) and using audio books or meditations to listen to that help me fall asleep. I’ve been doing better about not waking up in the middle of the night and being so awake that I try to get things done. Usually, I am able to simply go to the bathroom and hop back in bed.

    Being home means that I am able to complete tasks and errands like grocery shopping, prescription pick up, and just grabbing a snack or drink. It’s a sense of independence and freedom that you never feel in the hospital. I long for independence and being restricted means I get more frustrated easier. How do you deal with frustration? What works for you to stay calm and collected the whole time you are hospitalized?

  • Finally, Good News- Shunt Updates…

    Well, previously I posted about my shunt/IIH/high pressure symptoms and issues. I had to wait a week to get the lumbar puncture (LP) done because of being on blood thinners and dealing with the weekend. Interventional radiology (IR) performed the LP on Tuesday and the opening pressure was indeed high. I knew it was! Also, they found high levels of protein in the spinal fluid (CSF).

    My local neurosurgeon was in this morning and developed a plan. The shunt is going to be readjusted to a lower setting so it drains more and go back on diamox (ick!). I need to follow up with ophthalmology asap and setup a new ct and appointment with neurosurgery.

    Not sure what is happening about the high protein levels, but it might just be an incidental finding, although I’ve had it before. I am just beyond ecstatic that the shunt doesn’t have to be replaced at this time. I really couldn’t wrap my head around another surgery at this point and/or the impact it would have on my hairstyle!

    Now I just wait… for neurosurgery to readjust my shunt, which can be done bedside with a cool magnet thingy, and for the final word on discharge. I am so looking forward to being home and in my community. I have more follow up appointments than I’d like, but that okay by mean if it means I can sleep in my own bed and do my “thing.”

    My bed at home, waiting for me!