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’–

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˜‚

A week full of new to me MS information…

I had not seen my neurologist in over 3 years and decided I needed to check my over health with him due to the length of time not seeing him. I knew an MRI would be needed and other tests done.

So here goes the recap best I can remember it all.

06/10/2019: With my lovey by my side, My appointment – My neurologist was shocked I hadn’t been In for so long and wondering why his office didn’t call me to do a checkup or schedule sooner. The appointment consisted of a reflex text – little baby soft hammer o the knees, balance test – how much do you wobble back and forth with your eyes closed, strength test – put a leg up, hold on tight to chair while seated and fight him pushing down on leg, it was weaker than it had been on the last visit, a look in the eyes with a bright flashlight, a chat on how I’m doing mentally, physically – the urgent urge to pee frequently, sometimes I don’t make it, tighten of left knee, discussion of new meds to take – a lot of new approved pills, IV treatments, or stay on my Avonex that was a weekly injection (not my favorite Saturday night ritual- takes medication out of fridge at least 30 minutes before, take some alleve 1 hours before, numb injection spot with ice, prepare the needle, inject the shot that sometimes hurt due to not numb enough or hit a vein, take more alleve then wait up for an hour to make sure no odd reactions, or chose to try new medication in a pill form.

MRI appointment to be set, blood work needed, refer to Urologist and family Dr. provided. Vitals taken and then the nurse with the Information overload on new medication came in – dosage, things to look out for and be aware of.

06/12/2019: Urologist appointment set up for an 8am timeframe so that’ll be fun trying to get to the appointment and not pee until I get there. 😬 No smoothie for breakfast that day!

06/13/2019: MRI with and without contrast scheduled for the same day as my Urologist because why not get a full round of tests in a day. πŸ™„ Im hoping for a visit to where I don’t have to have them stop during the MRI because I have to pee. My new medication was scheduled for overnight delivery of the trail period.

06/14/2019: New prescription arrives early and I’ve been nervous and trying to be prepared to start tonight. The schedule is 1 pill lower dose for 2 weeks, then 1 pill higher dose two weeks then recommend full dose for the near future.

They have me starting 1 pill of 120mg once a day at dinner for two weeks. Then I do 1 pill of 240mg once a day at dinner for two weeks. After that I do 240mg twice daily with my breakfast and dinner.

It’s been weighing heavy on my mind due to some new possible side effects. Flushing – warming and redness of the skin (I can take baby aspirin at next dosage if it is bad) and GI symptoms – heartburn and having diarrhea does not sound fun.

Also I’ve been thinking about some of my other symptoms that I’ve always have had but paid closer attention to this past week. A little off balance walking because I’m a pro at tripping on flat surfaces, some tingling and numbness – like my arm was asleep but waking up with pins and needles. Were they signs that I was missing or just shrugged them off due to thinking they were possibly normal issues that could occur?

The tightness in my left knee is becoming more noticeable. I have noticed that I have a little bit more tingling in my left arm, my left hand aches a bit and feels weak when I wake up. But when it’s hot in this Arizona summer, things ache a little bit more and feel tighter.

I’m hoping for a smooth sailing weekend and month of no issues in this transition from Avonex to Tecfidera.

Life after loss..

It’s been a little over two weeks since my Aunt passed away and I still don’t have the right words.

She was in the hospital for a good two weeks after having a major stroke, she had swelling of her brain that had started to release on its own, she was transferred from a private room back to ICU because she developed pneumonia. She wasn’t able to eat or drink on her own. She didn’t want a breathing or feeding tube.

I’ve had a sympathy card sitting on my table since the day after she passed to send to her husband, my sweet Uncle, but I just don’t know what else to say or really how to convey my words for his loss and mine as well.

We were not super close, we would send Christmas and birthday cards each year. This past July she had sent me photos of my father when he was younger, he passed away almost 28 years ago, and it included a picture of all of them during a holiday that made me miss my dad and being closer to his side of the family. Now a huge piece of that is gone and I’ll never know her stories first hand. I think that’s the most sad part to me. I didn’t take more time to really know her, ask her about her childhood, or adulthood times with my daddy.

I feel sadness for the loss but I haven’t cried. I don’t know why. Maybe it’s because we just kept on going on with life. It keeps moving forward with out our lost loved one. We don’t truly take the time to crack open our hearts to allow the sadness to ebb in while sitting in our grief and let all of the happiness for times we will always remember in as well to say our goodbyes.

To all that have lost a love one recently or even a long time ago, I hope you sit with your pain and happiness feelings with love and gratitude to have had them in your lives if only for a short while.

Tonight, I vow to myself to take the time to feel this pain and write out the card even if it is to say I’m at a loss for words but I’m sending you so much love.

Auntie, until we meet again. I love you so, hope you are dancing and singing with your Momma and my Papa.