Fiercely Independent Pam

Tag: service dog

  • Is It Really Already May?

    I have been trying to get to MUSC for my AV Fistula because it’s looking and feeling kinda funky. There is a bulge that has never been there before and its “thrill” has gotten much more powerful. It was scheduled 2 weeks ago and got bumped off the OR schedule. Then I was scheduled for this past Thursday, and the surgeon wasn’t available, now I am scheduled for Monday morning. The procedure has to be done in the OR, but no cutting is taking place(supposedly). I am not feeling the best about this and not confident in a good outcome. Just my gut feeling.

    Then, there is the issue of the giant cell arteritis diagnosis- I have had symptoms since December when I was evaluated in the hospital but they decided to not do a biopsy because I was younger than the average age. When I saw my rheumatologist, he had the biopsy scheduled for the next day. The biopsy was negative, but my rheumatologist doesn’t trust the findings because so much time passed before having it done and during that time, I was on high dose decadron. So, I started infusion treatments and continued to take steroids. I still have the odd headaches around that area, so I am now going for an angiogram CT this week.

    Also up this week, but I might reschedule, is an appointment with the vestibular ENT at MUSC. He, besides being the genius who found my canal dehiscence and performed my craniotomy, is treating me for some intense ear pain caused by nerve issues. He is a wonderful doctor and always tells me straight on what is going on and what I need to do!

    For the most part, I am feeling pretty good these days. I feel that my strength has returned to my “normal” but I am still struggling with my balance. When I am able to hold on to something while walking, I am fine, but unassisted, I walk like I am drunk. My Zeen has been amazing and today I managed to walk a mile with it. Now I would like to build to walking the mile without breaks. Yesterday, I rode the NuStep bike for 25 minutes and gradually adding more time.

    My blood pressure is running super low again these days. I have gone back on medication to bring my blood pressure up to just above normal so that when it drops as I stand, it is still high enough to support me. I am struggling to maintain this after a large meal, since the blood pools more in my stomach for digestion. I have for multiple reasons, try to avoid heavy or larger meals as much as I can.

    Despite gaining and losing the same 5 pounds for the last month, I am closing in on the 100 pound mark of weight loss. I am very proud of myself for accomplishing this and hope it truly benefits my health. My biggest frustration is realizing I don’t have a lot of clothing to wear and that I have to go through my drawers and closets to remove bigger sizes.

    In non-health news, I continue to keep myself busy here in the community. I create and distribute a monthly newsletter that includes previews of upcoming events, tips/tricks, pictures of previous events, and more! The residents seem to really enjoy receiving it each month. I am still offering technology help. I absolutely love doing this and have helped residents do everything from make their first phone call with a cell phone to learning how to play their favorite game on their tablet. I get paid in all sorts of ways including M&M’s!

    Things are progressing well on the service dog front as well. The biggest update to share is that the next 2 steps will take place on June 10th. Folks from the client applicant committee of PAALS will be visiting me to see my apartment and the facility as a whole. The other step is considered a community assessment and for that I get to interact with one of the wonderful dogs in training at the grocery store! Both parts of this visit will be exciting! Hopefully, all will go well and I can officially become a client. This would then start my fundraising process to cover the expenses of Team Training. The process is long and requires patience, but I am beyond happy giving the time knowing that something amazing will come from it.

    May is a great month- always busy, always wonderful! I get to celebrate my birthday again and the weather never disappoints. With a prayer, some hard work, and patience, I will see the fruits of my labor and trust.

  • 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!

  • The Hard Work Begins Today: A First Day of Inpatient Rehab!

    So it begins.. I arrived at inpatient rehab yesterday after a few delays mostly because of the weather (crazy snow storm!) I ended up paying for transportation and it was a good decision since I am still having problems standing up and transferring.

    I was beyond welcomed by the staff here for rehab and they have been wonderful! I am confident that I forgot a few things, but hopefully I can have some help from my family. I am super excited to start working hard- I will receive at least 3 hours of pt/ot each day, which is exactly what I need. Right now I am finishing my Bible in a Year Podcast, which is nice to be able to stay up on.

    I am looking forward to unpacking my stuff and setting up for rehab, as I packed up pretty decently including lots of pants and t-shirts, but missing catheters and a watch charger! All in good time! For my first night I am wearing my special Buckee’s pjs that I picked up when I was there for my interview. It was a fun nod to what I have accomplished already.

    I think I have said this before, but wanted to update people about the progress of the service dog. In addition to the service dog, I am continuing with rehab. The next steps is to have a site visit here at my apartment and they will also be bringing a dog to help me demonstrate some skills, hopefully at the grocery store. This should be taking place after the committee meets- around late March/ Early April. I am thankful that they are willing to come here. From there, the next steps would be to be accepted as a formal client and begin fundraising for team training and similar. Then begins the “Fun” part!- Something special PAALS calls “Speed Dating” where we make sure the right connection is made between a dog and the “handler.” Eventually, team training will take place, but this is a far way off. All of this is super exciting!

    In the meantime, I will be working hard at standing and completing rehab goals. I am not sure exactly what it means to finish my antibiotics and future doctor’s appointments, but I moved as many appointments as possible. Time to track down what I am missing!