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 after 8 years.

I first started noticing strange symptoms in May of 2011…

I was walking up stairs at work and tripped, I chalked it up to not lifting my foot high enough.

I was then walking along and tripped on a flat surface, I chalked it up to flimsy no support slip on shoes.

I dropped a plastic cup I was holding in my left hand, I chalked it up having an injury in that wrist from years ago and it was just weak.

I had numbness and tingles in my legs, I chalked it up to maybe I pinched a nerve.

I figured I should go see my general practitioner and have her check all the items I had been experiencing. She said she didn’t know for sure but said it could be MS and was referring me to the Mayo Clinic for tests.

I had no idea what Multiple Sclerosis (MS) was and some days I still don’t understand it. The Mayo Clinic definition is:

“Multiple sclerosis (MS) is a potentially disabling disease of the brain and spinal cord (central nervous system).

In MS, the immune system attacks the protective sheath (myelin) that covers nerve fibers and causes communication problems between your brain and the rest of your body. Eventually, the disease can cause permanent damage or deterioration of the nerves.”

https://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/symptoms-causes/syc-20350269

That timeframe was such a blur. I had more symptoms that occurred, the numbness and tingling moved up to the core of my body and arms. I had and still have some balance issues. I know I did bloodwork, was referred to a neurologist and had an MRI done.

I was officially diagnosed with Multiple Sclerosis on August 31, 2011.

I still have times where I have numbness and tingling in my left leg and sometimes hands. My balance issues are still there when I’m tired which is often, I’ll start to lose my balance or walk into a wall.

I have bladder issues and have been doing biofeedback – Percutaneous tibial nerve stimulation (PTNS). I haven’t seen any changes as of yet but the nurse did say it could take up to 6 sessions before seeing improvements. I’m hoping that I will see some soon so I don’t have to pee every hour.

I’m hopeful that I will see some changes soon as we have a big trip planned in October to visit New York, Paris, London and family in North Carolina.

August always felt like a bummer month with things happening but someone told me recently August is enlightening. πŸ’–

Random thoughts about life..

As I sit here letting my mind wander, it starts to think of the past years, what’s happened to me, the trials and tribulations I’ve been though, the past relationships I’ve been in and the one I’m currently in with my lovey and who I am today.

I’m incredibly happy with the woman I have become. It hasn’t been easy but life is not all rainbows and unicorns.

I’m so in love at this time in my life but I wouldn’t be who I am today with out all of the mucky junk and happier times.

If I would of stayed where I was 10 years ago, I’d have been married for 14 years and with the same person for 20 years! Wow, that seems like so long to me. I don’t know if we would of made it past the things that broke us a part or if we’d have the 2 kids, 2 dogs, 2 kitties and over 7 acres of property to raise our family that we had dreamed on having. We may have had the perfect life or we may have been putting up a front to appear we had it all. I really don’t know because when we started out we were just babies and still had so much more to learn. I do look back and remember the love we had for one another. I will always love the man he was to me even after the hurt we caused one another. I’m happy to know he is loved and cared for by his lady.

My dreams have shifted so much due to the things that have happened to me. I moved to a new State to start fresh. I lost my beloved little kitty, Behr, within a few months of my fresh start. I was diagnosed in summer with MS that same year. I made new friends and lost some as well. I’ve been to a bunch of concerts and on Lovely trips. I made so many mistakes with letting my heart go after the wrong ones. I found love again that was truly a person I am meant to be with and we’re building a life together.

We’ve always wanted a place of our own to call ours. We’ve owned our little home now for over 4 years that we’ve made together with our 2 little furbabies. We absolutely love animals and would adopt them all if We had some acres up north or in Montana, maybe some day we will. We talk about where we want to go in the future with our lives and we talk about babies, the Human kind and adopting more with fur. We don’t know what the universe has in store for us. We have travel trips planned and our life that we want to achieve. We know ups and downs will happen but we are stronger together and we’re looking forward to the best times of our life together. πŸ’–

Mammogram and ultrasound update…

I went in to have my annual wellness exam last month. During the breast exam, she found a lump in my right breast close to the center of my chest. πŸ₯Ί

I was already due for a mammogram this year but this was a bilateral diagnostic exam. The pancake maker was uncomfortable for sure. πŸ₯ž 😣

I then had an ultrasound to check for any abnormalities. I had to wait for a Dr. to come in to do another ultrasound and speak to me about the results. ⏰

She said she didn’t see anything on the mammogram or the ultrasound. All is healthy just need to go back next year. 😌

Again, please do your own exams often and get checked once a year to make sure you’re in good health. 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.

The Annual Women’s Wellness exam that I dreaded to have…

First off, I go every year to get my exam. It’s always not an appointment to look forward to. I mean how fun is it to sit there half neeked getting poked and prodded in your lady bits and whoohaa. Especially since this was a new Certified Nurse Midwife I was meeting. My favorite Nurse Practitioner who I’ve seen for about 8 years decided to retire in Tennessee! I don’t blame her, Tennessee is beautiful and wanting to be closer to grand babies totally wins! πŸ‘ΆπŸ»

This appointment was frustrating to me, I got there early, checked in and gave them my sample. I waited a little while for the nurse to call me back to get all my vitals – BP 120/80! Woot, woot! I then waited almost 30 minutes sitting there undressed except my sock with the gown turned to be open towards the front and paper covering my whoohaa before she came in. I was there a full hour before I was even seen! πŸ™„

We chatted a bit, told her about my MS, that I wanted to get my vitamins, minerals and hormones checked. I also wanted to see if they were causing my menstrual migraines or if maybe a lower dosage for birth control pills would be recommended. We decided on just continuing on my regular pills but skipping my periods to see how I did. πŸ€”

Next was to check of my breathing, thyroid gland and then the breast exam was next.. She found a lump in my right breast close to the center of my chest. My heart sank a little.. She made me feel it and I said I don’t think I’ve felt that before. πŸ₯Ί

I was already due for a mammogram but now it’s supposed to be a diagnostic with ultrasound one that had already been set up for next month. She was explaining it could be the lymph node system as it does run near your breasts into your armpits. I feel kinda numb but hopefully it’s nothing. Please, please do your own exams often and get checked once a year to make sure you’re in good health. πŸ’–

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˜‚