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. 🖥

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! 💩

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. 💦

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. 📈📉

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. 👏🏼

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. 💖

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

MS Journey update – 1 urologist test down and 1 to go..

My Cystoscopy appointment was today – remember the small camera similar to a catheter that is inserted through the urethra and into the bladder to inspect for any abnormalities?

When I finally went in with the nurse, she instructed me to undress from the waist down and put a cover over myself. Ok, it’s like a lady exam. She comes back in to clean my area and put numbing gel on. Next the camera goes in.. The Dr asked if I was nervous, uh yeah, I’ve never done anything like this. 😬 I kept thinking of the last song that randomly played on the radio right before I walked in – Eye of the Tiger! 🐯 I totally laughed but felt pumped and like I could handle this. It’s an uncomfortable feeling for sure and not a new life experience I’d like to have but he said all was looking healthy! 😀

The Office was soo busy today. I waited longer for the Dr than the actual test to be completed. I had to go potty 3 times within the hour or so I was there so I’m guessing I’ll have a full bladder for next weeks appointment. 💦

The warning of things to expect after – blood in urine, burning with urination and urgency to urinate. ⚠️

I had to go potty when I got home – Hello stingy uncomfortable peeing and some blood in it.  I thought it was the iodine wipe they used to disinfect my whoooha. I already have to pee every hour sometimes twice an hour so the thought of being in pain every time does not sound fun. Nope, it’s been blood with a holy hell burning sensations alllll day long and I’m ready for it to stop now. 😩

I’m not looking forward to the next test that could last up to an hour but I’m hoping it goes smoothly. I have to have a full bladder and urgent urge to urinate, and hope these same issues don’t occur as much after that test. 🤞🏻

An update on the continuous MS journey..

Welp, my Urologist appointment went well. The Dr seems so nice and funny. He thought he was meeting a dude name Clark because they forgot a comma between my first and last name. He went to shake my Lovey’s hand and he’s like nope this appointment is for her but nice to meet you! We talked about possible medications and I asked for an natural options. He said there is a natural remedy (something to do with a needle inserted into a nerve at your ankle that stimulates the sacral nerves in your low back to help improve or restore bladder functions) for after he gets the test results back on next steps. He really likes my neurologist and said I’ve got one of the best as he only specializes in MS. He asked a bunch of questions – how’s the flow and stream? Do you feel you empty your bladder? Now every time I pee I sit and evaluate it all! Whew, what fun this is.. Speaking of fun, I have 2 awesome sounding procedures scheduled in July. 😲

Cystoscopy – small camera similar to a catheter that is inserted through the urethra and into the bladder to inspect for any abnormalities. Things to expect after – blood in urine, burning with urination and urgent to urinate – Uhm that’s why I went so this sounds like a joy! 🙄

Urodynamic Testing (UDS) – testing the function for the bladder. Need to come with a FULL bladder (drink about 3 – 12 ounce glasses) as the first test is to test the flow. After that test bladder is emptied. The next test sounds so much more fun than the camera in my whoooha! Small catheters and sensors are used for the filling of the bladder phase – Cough and valsalva (What?! is this?) to detect any urinary leakage, bladder spasms and pressures. Once the bladder is full again and strong urge to go – empty bladder while the machine is recording urine flow, pressure of bladder and the urge. After that all the equipment used is removed. My worst fear is pissing all over the place or on the tech! Gosh, please don’t let the anxiety poops come on then too! 😬

MRI appointment was okay – it’s always fun trying to stay completely still with a jackhammer going off near my head for 45 minutes.

They pretty much lock you into a what I call the Hannibal Lecter mask, give you a call button, an IV for contrast in one arm then roll you into the machine. First test are just to get a start image. Then you lay there for several other longer tests (some are 4-11 minutes, while counting or focusing on your happy place listening to the beep, beeps and sounds of hammers. 🤕 🔨

At one point I felt my left hand go to sleep and kept thinking I hope I don’t need to squeeze this call button due to having to pee! The tech said I did well and was so super still. I said of course I was I didn’t want to have to repeat any of the tests. My neurologist Dr. should have results in about 3-5 days to see if I have any new lesions on my Brian or C spine.

To top this all off I not only have to have a camera, a catheter in my whoooha with all these tests; I’m due for my annual health and wellness appointment with my gynecologist office – my favorite nurse practitioner just moved back to Tennessee so I have a new person who is a Certified Nurse Midwife that I’ll be seeing. Talk about putting it ALL out there for complete strangers all in a 3 week timeframe. 😑

Note to self: Don’t worry about work, you have time off for a reason so you can schedule appointments on different days! 🤗

I’m hoping all these urologist tests provide a good look at my future plans for not running like a madwoman to the potty every hour sometimes twice an hour. 💖

New MS Medication Journey

I reviewed the Tecdidera website, poured over the information received from the nurse at my Neurologist office and some chatting with my always super sweet supportive MS warrior friend, Cat, about when I should take my pill – right after eating or waiting a bit to let food settle. I started my trial of Tecfidera.

The transition will be:

120mg at dinner for 2 weeks.

240mg at dinner for 2 weeks.

After this month; I’ll be ready to take the 240mg twice a day for the normal dosage if all goes well.

06/14/2019 – Night 1 – at 7:10pm – my first 120mg pill of Tecfidera went down the hatch.

At 9:40 pm, as we were getting ready for bed, the flushing and warming of my face, neck, chest and ears started but it’s not too bad so far. It seems to be calming down after about 20-25 minutes. 😊

For no reason at all I was awake at 4:30am and couldn’t get back to sleep. I realized I was so focused on taking the pill and making sure I was okay I forgot to take out my contacts. 😮 I ended up wearing my glasses a little longer that morning to give my eyes a break. 👓

6/15/2019 – Night 2 – at about 7:40pm – Took a 120mg pill of Tecfidera. I don’t know if any flushing occurred because I was asleep pretty quickly after our day of shopping – Costco for gas, Petsmart for Kitty food, over an hour at Home Depot getting a grill for my lovey and other items, we grabbed some lunch then headed back out to Sprouts, after relaxing for a bit we hit up Wal-Mart. This is the most stores I’ve been to in one day for some time now. I’m usually pooped out after 1 or 2 especially in the Arizona summers. 🔥 🌞

I woke up again around 4:30 or 4:45am but the reason was to go potty. Of course, I was up for the day after that. It is Father’s Day so I worked on gathering pictures of my daddy and I to post a lovely message to him. 💙

I ended up feeling really good, it’s usually hit and miss on how I feel the day after my shot. We drove an hour and a half to surprise my parents. Little did we know they were not home, they were already out and about on some errands. I saw my mom had posted the exact Starbucks they were at so we hurried up over to it and surprised them in the parking lot. Ok, we scared a little pee out of them by Lovey jumping in front of theIt still parked car waving his hands and me opening their back door. 😂

I woke up at 2:40am because I had to go potty. After that my brain would not shut off. Random thoughts, hmm I wonder what will happen on that show we were watching the other day. Oh I have a few more hours to sleep at least. I wonder why the sky is blue kinda stuff but none of it mattered. I kept telling my brain to shhh and go back to sleeps. 😴

06/16/2019 – Night 3 – at 7:20pm – took a 120mg pill of Tecfidera. No flushing unless it happened while I was already asleep but then again I feel like I would know due to the warming of my skin.

Finally a decent night of sleep. I’m blaming the full moon on all the restless sleeps. Moon 🌝 😬

6/17/2019 – Night 4 – at 7:25pm – took a 120mg pill of Tecfidera. Again, no flushing that I know of.

Another decent night of sleep. 👏🏼

06/18/2019 – Night 5 – at 7:30pm took a 120mg pill of Tecfidera. Yet another night of not flushing!

The best night of sleep so far, very close to normal hours and minutes that I usually get.

I’m happy that things are going so well! I haven’t had any GI symptoms – I take a peppermint beadlet from Doterra right after my Tecfidera dose as it’s supposed to help with heartburn or upset stomach. I haven’t had to rush to the potty either for the other end. 💩

Note to self: just because you feel great and super hero-y doesn’t mean you should go for a walk in 104° heat even if you were just trying to thaw out from your freezer locker of an office. As I sit here with my lower half of my body throbbing and feeling tingling I’m remind to slow it down and maybe walk inside the office next time. 🥵 🦵 🔥

06/19/2019: Night 6 at – 7:30pm took a 120mg pill of Tecfidera. Still no flushing and another good night of solid sleep. 👏🏼😊

06/20/2019: Night 7 – at 7:40pm took a 120mg pill of Tecfidera. I had dinner a little early and was a little panicked because I was afraid I waited too long after dinner to take my pill. It seemed all was okay with no tummy issues and still no flushing. Another good night of sleep, I feel refreshed and was awake a little bit for the alarm went off this morning. I still had some numbness and tingling in my left hand but my left knee doesn’t feel as much tightness as it has in the past.

I really think my body is getting used to this new routine. I’m hoping for continued success for this transition. I know I feel better and look forward to more freedom of not having to worry about my shot schedule. It may have only been once a week but it was becoming to feel like a burden. Saturday evening would roll around and I had a whole routine I needed to follow. Take a dose of Aleve at least an hour before to help with the side affects of flu like symptoms, take the shot out of the refrigerator at least 30 minutes before, set up your supplies, double check to make sure switching off of injection areas, ice the are for at least 20 minutes, inject the needle into the leg muscle, try not to hit a vein because then it’s a bit of a gusher and will be paint the next day, clean up and put the needle into the sharps container. We couldn’t really go out on a Saturday night and depending on how I felt the next day it was hard to set plans for a Sunday. Some weekends it was a breeze, others I would have a headache for days after, feel extremely fatigued and not be able to do anything. 🤕 💤

I’m not saying it was the medication but it feels good to not have than worry. If course, things might change once I have my period and may have a headache during that time frame but I’m looking forward to less days of worrying if I will or will not want to do my shot. Plus taking pills on extended vacation will be so much easier since airport security won’t have to take kit the ice packs to make sure they are still frozen and question me as to what Meds I’m taking and what they are for. 🙄

I’m thankful for the new studies, medications that have come out and mostly my support system that I have around me. I’m not my diagnosis, I am just me. I hope others take the time to re-evaluate how they are feeling and be your own advocate by take actions to ensure you are living your best life with the cards we’ve all been dealt. 💖

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. 🙄 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.

My secret disease…

I’m going on my 8th summer of having MS and live in one of the hottest cities of the US because 8 months out of the year is glorious! The summers are freaking brutal.

I don’t tell a lot of people I have MS, I don’t want pity, I don’t want the worry that I’m not performing up to standards of others. I don’t want the second guessing of my abilities at work and really I’m just scared I won’t be looked at as who I’ve been in the past to some people. I do want to be understood though but still keep the knowledge of my disease to the ones who matter most to me.

I’m independent and don’t need help but appreciate it so much when it’s offered. I’m lucky to have a partner that understands mostly of what is happening.

I wish people knew about my invisible symptoms that you don’t have to see to believe…

When I say it’s too hot, I can’t be outside for too long, it means it’s too hot for me and I need to be mindful of my time outdoors.

I can walk fine and then all of a sudden trip on a flat surface.

I can go to 5 different stores in one day with no problems and then the next day I can’t even move off the couch from fatigue.

I try to work out at least 5 days a week and some days I rock while others I’m just getting through a workout.

I have numbness and tingling at times in my hands, throbbing in my left knee and it feels like a vise grip is tighten around my knee.

I try to drink enough liquids but not too much as somedays, really everyday, I have to use the restroom hourly, sometimes twice an hour. If you see my rushing to the restroom, please don’t make fun of my “small bladder” or tell me you need to get that checked out. I know what’s wrong with me and don’t need you to advise me of how to take care of me.

I still want to be invited to places even if sometimes I have to cancel at the last minute because I know I won’t be of any joy to you or have fun myself.

The headaches are intense and suck all the life out of you.

I have vision problems if I stare at a computer or phone too long and need to take breaks often.

I am a frigging Warrior!

#MyInvisibleMS

#WorldMSDay

Thank you auto-immune disease for ruining my Saturday night…

I had the best intentions to set out on a an hour and a half trip down to southern Arizona to watch the sunset as we were driving and to see my friends band play.  We have a diabetic cat so we have to give him insulin twice a day so that was already planned for and we would have plenty of time to make it to the show. I could tell my emotions were starting to creep in. I wanted to go, I truly did as I miss my friends in the band a lot, I haven’t seen my them in over a year and three years had gone by before that but I also felt like I didn’t want to go. I thought of the drive, where the bathroom stops would be, the feeling of wanting to be spontaneous and surprise the band, the thoughts of what could we have for dinner, could I change my injection of my weekly medication to Sunday and still function at work on Monday. I felt tired too even though I only went grocery shopping and did one load of laundry. The time was ticking away and I was getting hungry but didn’t know what I wanted – well I did – I wanted nachos but didn’t want to go out or make them. I wanted peanut butter cookies too. My boyfriend offered to take me to dinner instead of us going to see my friends or to make nachos here at home, he found a quick peanut butter cookie recipe as well. But really nothing was making me feel any better and I just wanted to cry. The sudden emotions, mood changes and fatigue are truly the most annoying thing to me. We didn’t end up going anywhere, we watched some shows, I didn’t get my nachos but I can say the care my boyfriend put in to try and make me happy with the delicious cookies did make me feel a little better. I had to sleep off some of the emotions but still do feel bad I didn’t make it to see my friends. Still working on changing my mindset daily but I know that I have to take each day as they come and try my best to enjoy the times I do make it to other events.

Also we made homemade nachos for lunch on Sunday and they were delicious! 🤤