Fiercely Independent Pam

Tag: Don’t Let the Hard Days Win!

  • As The Puzzle Pieces Come Together!

    Things are starting to come together. I can stand without too much assistance from a walker or raised surface, I am transferring without the board at times, and I am able to get “on” my Zeen. All of these things are pointing to more independence and ability to do more tasks.

    I am truly hoping that when I attempt to use the toilet tomorrow, it is a success and I am able to stand up and off the toilet without too much fuss. More than two months with a bedpan is getting quite old for me. It is the last task for independence besides getting in an out of a car. This too needs to be mastered sooner than later, because I have appointments at MUSC that require car transportation.

    I wanted to say something that most didn’t agree with, mainly coming home from rehab unable to stand. I wasn’t really given the choice to stay, but I guess I could have pushed it, but I really felt that I wasn’t going to master the task in that environment. It might seem silly, but if everyone is not on board for the same goals, I don’t see it happening. I knew I could kick my own butt and do exercises that would help me eventually stand. I also knew that being home with my power wheelchair would be so much easier for transfers and such. I believe I made the right choice and glad that I did come home when I did.

    I am thankful for my caregivers who helped me out, especially in the beginning when I first came home. I wouldn’t have been able to do it without their support and creativity. Also, they provided a giant kick in the butt when I needed it most.

    Now, the list of tasks is getting smaller and I am feeling more successful. I know the toilet is going to be a challenge, but something oh so worth it! I look forward to the day that I don’t have to clean out a bedpan!

    Life with the Zeen continues to go well. I took it out for a longer walk this morning and thinking of going out again. I love the freedom of being able to use my legs and still have security from falls.

  • 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.