Fiercely Independent Pam

Category: Health

  • 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.

  • Setting a Goal and Striving to Meet It, and More!

    I am headed out this afternoon to the urologist to figure out next steps for my kidney stone. I am hoping the whole process of “blasting” the stone is fairly easy and able to be done soon. After all, the kidney stone is simply getting in the way of my PT and OT goals.

    In other news… I met my goal this morning with PT. I was able to stand while sitting in my armchair at a normal height. That means I didn’t use the lift function at all. It wasn’t the prettiest, but I did it! I also took a few strolls around my apartment with the walker and got a new weight measurement. All in all, I count that as a huge win.

    OT is coming by very soon and I am hoping we can start working on the goal of using the toilet. It would be a huge improvement if I was able to use the toilet instead of the bedpan. Having stood at a normal height, I think I am almost ready for the toilet.

    I am not a big fan of having PT and OT back to back since my body gets tired quickly, but I also don’t want to turn away services so I went with the back to back today. After all, I have goals to meet.

    Tomorrow during PT we are going to try the Zeen. I think the hardest part will be transferring into the Zeen and out of the Zeen. I think I am going to have to do a lot of thinking to come up with a plan to make it work. If I can get into the Zeen, it will go a long way to strengthening my legs. I would love to try to make it into the hallway. This is all lofty goals, but I have to put it out there to try to make it happen.

    The ultimate goal is to be able to use the Zeen and transfer with it when I go to MUSC on March 17th. I have an important eye appointment and need to figure out the Zeen, getting in and out of a car, and transferring from the Zeen to other chairs. It’s a big list of tasks, but I am determined and like to be fierce about deadlines like this.