I still feel like an orphaned patient…

It’s been over 3 weeks since I requested my old office to send my records to the new office.

I know the new office has my records because I called them last week to confirm but I have to wait for the Dr to review and a scheduling coordinator to call me. They have 72 hours to get back to me but it’s been over a week and by my calculations that’s 120 hours – 5 long business days…

I don’t want to be pushy but my prescription for my medication is about to expire.. The old office was a little rude when I told them I’d be leaving them to follow my Dr who I have been with for Nine years so who knows if they put the request for an additional 30 days as a “courtesy”.

I still have not gotten a call back for an appointment at the new office so I called them. They have all my information but said they reviewed it and my Dr is not taking new patients. Uh excuse me, I’ve been his patient for nine, I repeat nine years. I was almost in tears with my fiancΓ© standing over me about to go off on her. Well ma’am you are new to this office. Obviously still feel like I was about to cry. I’ve never felt helpless with this disease or out of control minus when I was first experiencing symptoms.

A silver lining is I was able to order my prescription and it looks like it doesn’t expire for a year so that may be interesting next month for my refill if that is wrong.

I feel like an orphaned patient…

“Dear Valued Patient,

Thank you for being a patient. It is with mixed emotions that I write to inform you that, effective immediately, Dr H. has left our practice.”

My mixed emotions were off the charts…

I couldn’t believe it, tears streaming down my face and snotting into my loving fiancΓ©’s shirt.

What in the?! He’s my most favorite man on the planet! Wait, oh my god, who will take care of me? Its been almost 9 years with him, he knows everything from the beginning, I can’t start over from scratch!

Then my research brain kicked in and I googled his name. Thank you universe for the interwebs; he just moved to a new provider! Whew! The tears of joy flooded..

I had to request my records to be forwarded to them and I’m now awaiting for the scheduling assistant to call back to schedule an appointment with their office.

If you’re just starting out or in the middle of your treatments, I hope you find your most favorite neurologist and can hang on to them.

Much love to you all in these uncertain times.

PTNS a biofeedback update!

I completed My 12 weeks!!!

I have graduated to maintenance appointments which will be every 2 weeks for 6 weeks (so 3 months total) then we go to once a month. Some go for about a year then phase out. Some have resurfaced years later saying PTNS was working for me and start again.

I’m not sure if I’ll have to do this for the rest of my life or just phase out. I have the hope that my bladder has been at least reset in not having to go potty every single hour. I know it’s helped because some days I feel like a regular human and can sit through a two hour movie. Other days I do have to go once an hour for a few hours depending on the amount of liquids I have taken in.

I started trying to remember to go potty first thing when I wake up, walk around for 15 seconds or so and go potty again. I’ve been trying to do this mid day and right before bed too. Most nights I can sleep at least 4-6 hours before I have to get up.

Medical mambo jumbo:

Normal adult bladder capacity is 400-550 mL. A female bladder experiences a first desire to void at a volume of approximately 150 to 250 mL, a normal desire to void at 300 to 400 mL, and a strong desire to void at 400 to 600 mL.

Normal bladder function is passing urine every 3 or 4 hours but should be less than eight times a day and not more than once during the night.

Soo yeah like I said most days, I feel normal! Others in over the 8 times a day but at least less then before I started the PTNS biofeedback.

My mindset is on being better or at least improving my health and this is a good step for me. Now I can actually drink enough water and not be worried I’m going to pee my pants during a work meeting or a massage even!

Biofeedback update – Session 9!

I went in for my 9th appointment and the original lady nurse practitioner that I have had most times was assisting in surgery so I had a new guy that is also a nurse practitioner.

He poked my left leg and tried to stimulate the nerve, he struck out. So he went for the right leg, again he struck out. He had to have his counterpart come in and said “I’ve never had to do that!” The other sweet lady nurse practitioner came in and found the nerve right away. I felt bad for the guy but it happens!

So far I’m pleasantly surprised that I’ve seen improvements. Of course I have days that I still go every hour a few hours in a row but it’s not EVERY hour! I think it depends on how much liquid I have in the mornings but I still need to hydrate!

They both said this is the time I should see the biggest improvement and I’m stoked but mindful I may have a bladder flare up but still Yays!!

My Step-brother was a Mo-Fo but Cancer is worse.

It has been 2 weeks since we found out that my step-brother passed away from liver cancer, more likely Cirrhosis of the liver.

In reading the comments online from his peers, friends, some family – he was an angel of man, a funny guy, a great partner (he was a sheriff), a gentleman, a kind and loving soul.

He was a drinker and not the nicest person all the time. He was a real dick most of my memories of him with a few times of being a nice guy.

I haven’t talked to or seen my step-brother in about 13 years. My daddy hasn’t talked to him in over a year.

It was a turbulent relationship between us all, Daddy, my mom, step-siblings and their mother, really throughout the years with some years being better than others.

Standing in my kitchen watching my sweet daddy cry at my dinner table just broke my heart. I’m sure his emotions were all over the place. Stunned, grief, guilt, disbelief and finally acceptance.

Why didn’t my step-brother’s mother call to tell my daddy his one and only son passed away?

When we found out he had been sick and in the care of his biological sister, my daddy’s daughter, for over 2 months; why didn’t he call before he passed away? And why didn’t she call to tell him?

As more and more details emerged we found out that my step-brother didn’t want anyone from his father’s side of the family at his funeral. We have no idea if this is true as we know his mother is a manipulative creature.

My daddy and mom say they made peace in their hearts and minds with my step-brother. I truly hope my step-bother did too when he met his maker, whatever this maker may look like, him/her/a panda, now he has to listen.

I don’t care how much of an ass you are/were nobody deserves to have suffer or lose their loved one to that beast cancer.

May we all be at peace and meet again in the light of love.

It still breaks my heart for my parents though. It’s just not something I can fathom as I get older. People suck but most the time it’s their own issues not the people they are rude/mean too. We’re all just fighting our own internal battles and trying to survive life. Be kinder to all. πŸ’™

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.”


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’–

Biofeedback Update – Appointment 1..

I went in for my first Percutaneous tibial nerve stimulation (PTNS) appointment. It’s a needle that is inserted into the tibial nerve near your ankle that sends a mild impulse electrode current to stimulate the sacral nerves in low back. πŸ€”

I had sent my sisser this article from another place I found online that does the PTNS so she understood it better.


She was asking if it hurt and I said I don’t know but the animated girl on the site didn’t look like she was in any pain.

She said I should take picture like the girl so I did! πŸ˜‚

The nurse thought we were hilarious and totally made sure it looked good. I’m taking care of my issues and working on my mindset at the same time! πŸ’– πŸ‘πŸΌ

The nurse inserted the acupuncture like needle, hooked it up the stimulator, upped the numbers until I felt some sensation in my foot or ankle and set the time for 30 minutes. It felt like a little heartbeat was going off in my heel the whole time. ⚑️β™₯️

The Dr had said once a week for 6 weeks. The nurse said it may be once a week for 12 weeks and then possibly some maintenance visits after. Im fine with that as if it works and no pills that’s a win! πŸ‘πŸΌ

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’–