Fiercely Independent Pam

Tag: A/V Fistula

Here We Go Again: If Only My Body Behaved Itself!

So, this week was already filled with surgery, appointments, infusions, then I landed in the ER followed by an admission to the hospital! All in the exciting life and times of my body.

Bright and early Monday morning, I was down at my home away from home, MUSC for a fistula gram. All went well, I got a good nap thanks to anesthesia and the fistula was “ballooned out” and back in working order. I may need follow up work on it, but for now its already looking better.

All was going ok, but Tuesday brought a slew of issues later in the day. I was just feeling “off” I hate when I say that because I know it’s not really helpful. I often say things like “Something just isn’t right.” Nine out of ten times, something pops later on and it all makes sense. My vision was funky in my left eye and I had a top 10% headache. By 8 o’clock at night, I knew I better go get checked out. So to the ER I went!

Then of course I heard the bad news that I was assigned a “hall bed”- the worse place to be with a tough headache and light sensitivity, but in the end is was worth it because the doctors admitted me right away and I landed in a room upstairs with little fanfare.

Things went well, the neurologist was in bright and early and made some medication changes to see if they would help. I also was finally able to get some relief from the headaches. I did however start to notice that my blood pressure was quickly creeping up to a place I wasn’t comfortable with. When I asked the nurse, she dismissed it as anxiety- multiple times. I hate that! When I am anxious, I am aware and will say that I’m anxious, but when I am not and my blood pressure is increasing, please help me! So, by midnight, my blood pressure was in the 200/100’s and they finally treated it!

Why can healthcare providers decide that they know what is going on more than a patient? I trust providers, but I also need them to trust me and my experiences. Either way I am just glad I made it home today, and despite needing to make follow up appointments, I can get back to living my life again!

A picture of my awesome raised flower bed!

May 7, 2026
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.

May 1, 2026
Holding it All Together- Not So Pretty, But Getting the Job Done!

Have you ever had that kinda morning? The one that makes you think you should just run back under the covers? That was me this morning! So much happened, I’m not quite sure I will remember it all!

Yesterday, my power wheelchair began randomly shutting off and jerking me forward in the process. I thought it was the connections and put new tape on the this morning to keep them together better. Then I charged the wheelchair. When I removed the charger and turned it back on, I got nada! No power at all. Meaning I didn’t have use of the most useful item in my apartment! I managed to finish my morning routine with my walker. I also made a phone call to the wheelchair company to have them call me as soon as possible!

Next on the list was that my deposit that was supposed to come through to my bank account did not. Another phone call and figured out I added an extra digit to my account number by mistake! Could take up to a week to work out! Great!

The shining spot of the morning was physical therapy where I made it 2 laps (1/2 mile) around the building in my Zeen and felt great! I created a new goal- 1 mile (4 laps) by my birthday (May 19th). This will be a HUGE accomplishment!

Then the hits kept coming… I went to lunch using my walker and transferred to a regular chair. That went ok, but I had to stop several times walking back to my apartment because I was lightheaded and dizzy. Also, the wheelchair repair guy is booked for the remainder of the day and unable to get to my wheelchair until tomorrow afternoon.

Tomorrow I was scheduled to have my fistula looked at through a special procedure in the OR at MUSC in Charleston. I say was because I found out that I got bumped until next week, but I guess that is still better than going there and then getting bumped! Now I’m scheduled for a 6:30am arrival! Ugh!

So, here is where I stand: deposit coming in tomorrow, wheelchair repair tomorrow (hopefully this will not wipe out my deposit), fistula procedure next Thursday, thinking I am going to challenge myself and take my Zeen to dinner.

Days like this is a sign to give yourself some grace. Not wallowing in self-pity, but recognizing that you are holding on with tape (and hopefully a prayer or two). I will proceed gently with myself and laugh through the unplanned moments. This is what we are called to do!

April 22, 2026