Biofeedback update & Speciality pharmacy issues…

I completed my 6th biofeedback appointment and still am trying to determine if I see any changes in my bladder function. πŸ’¦

I actually have a running list of times I have gone potty the last two days. πŸ˜‚

It seems I still go every hour but I’ve gone 2 hours without having to go a few times! πŸ‘πŸΌ

I’m hoping to see some changes soon especially before our vacation planned next month. 🀞🏻

Now on to my issues with CVS.. This the the 3rd of 4th time I’ve had an issue with them getting my specialty medication to me. πŸ™„

I placed my order online LAST Friday to be shipped and here on Tuesday as I would be out of medication for my evening dose. I tracked it, it said scheduled for 9/10. Welp it was about 5:30pm and still no updates. It showed that the package was incorrectly sorted which may cause a delay and would not be here until 9/12. πŸ€” Uhm no, now I’m out of medication and had to call and speak with an escalations manager. This always frustrates me as they are so nice and all I wanna do is yell at the UPS person that they have on the line “do you not understand the urgency?!” as they are never helpful. 😀

The manager had to cancel the other order as the package was still in CA and sent out a new one. I just don’t understand why CVS does not send items through UPS overnight or why they do not just send Golden State Overnight like how my account is listed to do so since UPS has messed up in the past.

I’ve tracked the package and at least it’s in my state! 😊

I know it’s only a day without and my insurance pays for the entire amount minus my little Co-pay. What if it was a medication I needed to save my life? I can’t imagine how people would feel if they didn’t have their life saving medications. And how do people that can’t pay for their medication on occasion have to choose between groceries or medication do this daily? πŸ˜”

I am lucky to live where I do live and have the medical care that I do have. πŸ’–

MS journey continues – Urodynamics Study (UDS) test results.

Bladder is all normal and healthy in regards to age and anatomy.

During the filling of the bladder; I had spasms in my bladder, tricking my body into thinking I had to go hence the frequency.

I had a spasm at 120 ml another at 150 ml. Once the amount was at 225 ml, the urgency increased and I needed to really go potty.

After I emptied my bladder, I had about 150 ml leftover that was needed to be removed. The average female bladder holds around 400 ml so mine is a wee bit off.

The Treatment plan is to eliminate first thing in morning, walk around 15-20 seconds, go potty again. Throughout the day try again to go potty, walk around 15-20 seconds, go potty again. Repeat before bed.

The other option is to go on the hour every 2 hours during day which may be a task for me since I still go every hour and sometimes twice an hour.

The plan we set was Biofeedback – Percutaneous tibial nerve stimulation (PTNS): a needle is inserted into the tibial nerve near my ankle that sends mild impulse electrode current to stimulate the sacral nerves in low back to help improve or restore bladder functions. He said once a week for 6 weeks but some sites said for 12 weeks. I mean whatever works that’s not a pill. The first visit will be in August.

If the biofeedback doesn’t work then possibly Botox into the bladder or medication. We always ask about natural therapies as I don’t want to be lugging around a pill box so hopefully this biofeedback option works.

MS Journey update -2nd urologist test done..

Let’s just start off with, it was an awkward appointment for sure.

This was for the Urodynamic Testing (UDS) – testing the function for the bladder. I was supposed to come with a FULL bladder (drink about 3 – 12 ounce glasses). I got there early, already had to pee and knew I could not hold it. 😩

After about 20-25 minutes the technician called me back and took me to the exam room. I had to undress from the waist down. She told me all that was going to happen. She stepped out and on her way she asked me to sit in this weird chair and pee into a bucket to test the flow. 😳

The setup…

The chair is then raised up so she can insert a catheter in my whoohaa (to fill the bladder) and in my butt to measure the rectum pressure when you pee. Also, sensors are taped to your leg and butt. I never knew your butt controlled the bladder pressure. 😐

Oh and she strapped this power pack to my leg that goes to the catheters to measure stuff so it’s recording on the computer next to the chair. πŸ–₯

She started to fill my bladder with water. I had to tell her when I felt the urge, when I was looking for a bathroom and when I’d be knocking on the door to tell people to get out of the bathroom so I could go. I also had to cough in between filling and push like I was trying to have a bowel movement to see if I had leakage. Thank gosh I didn’t pooo everywhere! πŸ’©

I guess I have bladder spasms that trick me to think I have to go, they subside some and then I feel like I really have to go. I think she said she gave me 400ccs but I really don’t remember. I think the average bladder can hold 13-20 fluid oz. πŸ’¦

She unhooked the sensors and took out the butt catheter and unstuck the sensors from my leg and but. I then had to empty my bladder by peeing into the bucket again to measure how much I released. I am not sure how much I peed out as some missed the bucket. 😬

She came back in and had to empty my bladder with this syringe thing and records what was left over in my bladder. πŸ“ˆπŸ“‰

She gave me this AZO cranberry caplets to help with possibly burning with peeing today. She said to drink lots of water to flush kidneys and bladder. So far, I’ve had minimal pain and only a little blood which is to be expected. 🚽

All in all the appointment was uncomfortable but pretty quick. I get results next week and grateful that we should have plan on moving forward. πŸ‘πŸΌ

I’m full of gratitude for my support system that I have in my life whether they are just here for me by posting positive thoughts or with me personally day to day.

I thank my lovey who was at work but texting before telling me I’d be okay and after saying now a plan can be set up. πŸ’–

My sissy who lightened the catheter in my butt tracking the pressure used by jokingly saying you’re butthole has a record now! πŸ˜‚