Fiercely Independent Pam

Category: Memories

  • 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.

  • Six Years Ago: My Adventure with Blood Clots Begins.

    I’ve said it before- I have a love/hate relationship with Facebook Memories. Today, it reminded me that six years ago, I was fighting a giant uphill medical mountain. Besides doing a round a plasmapheresis(at the time they believed I had MG- Myasthenia Gravis). It turned out the multiple blood clots were found in my lungs (PE’s).

    The nurse and doctor worked quickly with a heparin drip. Then the reality of things came into focus. I would be at risk for additional clots for the rest of my life and would need to take a blood thinner forever too. I was placed on Eliquis, which requires less work than Warfarin.

    It was a scary diagnosis and I couldn’t do anything but follow the doctor’s orders. I knew having blood clots, especially in my lungs, was bad, but I just wanted to know what then soultion was going to be. Sometimes it amazes me to think about what I have gone through and that I am still hopeful and open to the next medical adventure.

    The good news is that despite going through three rounds of plasmapheresis, doctors were able to dismiss the MG diagnosis and needed to look for other answers. I had a muscle biopsy to confirm that it was not MG. This didn’t help the blood clots, but was still very good news.

    The bad news was a couple weeks later, I developed other clots, this time it was a DVT in my right arm. Since I developed a clot while taking Eliquis, the doctors considered that a failure and placed me on Warfarin and with all the monitoring it required.

    I was happy to find out at least that I could do my own monitoring of my INR for being on Warfarin. I was given a little machine similar to a blood sugar machine that uses a sample of blood. I do this once a week and then the clinic calls me back and gives me instructions for taking the Warfarin for the week. This is a big difference than when my father was on Warfarin and had to go to the clinic every week for a blood draw. So far, (knock on wood) the Warfarin has done its job to prevent future clots.

    Memories give us strength. They remind us what we have been through. For some people finding out they had multiple clots in their lungs might of put them over the edge, but not me- I challenge myself to keep going and not let anything stop me!