Fiercely Independent Pam

Tag: Don’t Let the Hard Days Win!

  • Quickly Approaching 100 Posts!!

    Technically, this is my 100th post! I started this blog in April and took some time off due to medical stuff, but I’ve been committed to it for almost a year now. Honestly, I did not think I would enjoy it as much as I do. I’ve never considered myself a writer, but I am enjoying finding my voice through “Fiercely Independent Pam!!”

    I have shared things with you, my audience, that I never would have expected to, but feel very strongly that if it can help someone else on their own journey, then it is worth it. My journey continues to take all sorts of twists and turns, most I would have never anticipated. It is so important to note that none of my successes would have happened without the people I call my tribe! These are my friends and family both locally and from a distance. The visit, phone call, text, or FaceTime, makes all the difference in not feeling so alone.

    I need to also include some of my doctors, especially those from MUSC as part of my tribe. I have uncovered answers from medical mysteries that are decades old. Unfortunately, I have also had nightmare gaslighting experiences with other providers. It’s important to remember that both can happen, we need our tribe of family and friends to believe us.

    Looking forward, I have so much to be excited about. Continued care for my dysautonomia/POTS, losing a little more weight, getting a stronger handle on my blood sugar, and getting better at Mahjong, finding the right medication for my RA, starting my tutoring services again, and more!

    Most exciting of course, is the possibility of a service dog with PAALS. Three years ago, I told my brother Tim that long-term I wanted a service dog to assist me with mobility tasks, I think he thought I was crazy, but I told him it was going to happen. And here it is, closer than ever. I pray each night that I am gifted this opportunity (and it happens soon). I truly believe it will be life changing.

    Well there it is, my 100th post- I thank you for sticking with me and reading my posts. The best thing you can do to help me is to share my posts and social media pages. I will continue to create content as long as there are people to interact with!

  • IIH Is A Scary Disease That Always Raises Questions at the ER- Especially About the VP Shunt.

    I don’t always talk about specific health issues I have. Sometimes, when something is going wrong, like with my shunt, I write about it. Having the shunt is because of my IIH- This was discovered in Florida when my eyes started to be difficult and I was diagnosed with papilledema, which is dangerous, sometimes permanent optic nerve swelling. It is treated with eye drops that are similar to eye drops used for glaucoma. I’ve been using these eye drops for a couple of years now. The doctor believes that beyond treating the optic nerve swelling, it is good preventative treatment for glaucoma since I have such a strong family trend. I constantly live in fear that the optic nerve swelling will be permanent and I will lose vision.

    Recently, I also was diagnosed with Giant Cell Artemis, where I lost a lot of my peripheral vision and it still hasn’t come back, despite having the VP Shunt. I am on high dose steroids (dexamethasone) and I just got a new medication after the prior authorization. Hopefully, I can start cutting back on the steriods.

    IIH is a scary disease, where you never know what is going to happen and the ER is always concerned with the VP Shunt.

  • I Took the Zeen Out for a Spin and it Felt So Right!

    For the past couple of weeks, I have been trying to get strong enough to be able to stand up with my walker. I started this process in rehab and never quite finished. I was much more comfortable and motivated at home. All this work was for a very specific purpose- using the Zeen.

    Yesterday, I was able to stand with my arm lift chair at a “regular” height, which I counted as a major victory. It was also a sign that I was ready to try my Zeen. As a side note, I have been wanting a Zeen since I first saw them about a year ago. I tried to get insurance to cover the cost, but it wasn’t going to work. So I purchased my own Zeen. I was so excited on delivery day, but God had other plans for me and I landed in the hospital with sepsis.

    Fast forward to today. I was able to stand up in my arm chair an use my walker to get in position with the Zeen. I figured out the “controls” and in a short bit, I was navigating around my living room and kitchen. The carpet made things extra difficult but a few more times, my legs should be up to the challenge.

    I was so proud of myself for getting into the Zeen and navigating around. It was a goal In set for myself and it feels great having achieved it!