Fiercely Independent Pam

Blog

  • 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!

  • 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.