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

It’s MS Awareness Week but really it’s MS Awareness Month…

You may already know what MS is or have heard of due to the celebrities that have been in the news recently. If you didn’t know what MS was, here is a link to help understand it a little better – https://patient.info/health/multiple-sclerosis-leaflet. Trust me; just like when searching WebMD for certain symptoms when you feel a cold coming, you can get lost in a rabbit hole of searches. 

I feel like I can’t “celebrate” the new strides being made or help bring awareness to a disease that only a handful of people know I have.

I feel like I’m hiding some of myself away as I don’t want certain people to know due to my fears of the unknown.

How would this affect my career?

Will they say I’m no longer needed due to they don’t know how my disease could progress?

Will I have to get a job with more stress and make less money?

Will my friends finally understand that I still want to be invited to events but may not always show up?

Will people change the way they see and treat me?

Will they give me that sad look of pity?

What if I want to have a baby but now I’m too old and won’t be able to keep up due to my symptoms?

Can I go off my prescription for a pregnancy?

Will my symptoms worsen after pregnancy?

Ughhh Stupid fears and mind spinning out of control what if scenarios…

I was diagnosed 7 1/2 years ago and the people that do know are so supportive and loving towards me. I’m sure they have their thoughts and maybe worries of what will happen. They also don’t know the day to day struggles that I have. Most symptoms are minimal. I do have some tingling and numbness at times. I sometimes get wicked headaches and have serious fatigue. I have to ensure I use the restroom right before I leave anywhere. I also need to know where every possible stop for use of a restroom is just incase that sudden urge of the less talked about symptoms of having to pee and not being able to hold it a second longer moment appears. I appreciate the comments of trying to reassure me – like “you’re getting older or I have to pee a lot too.” I don’t think they understand the serious panic one feels over the fact that not only could they pee themselves or even worse poop their pants in public but those events have happened already. I even cringed at typing that last sentence for fear of some unknown person reading it and feeling sorry for me. 😒

How about the welcome to MS Awareness Week I received yesterday. Saturday’s are my medication days, all went well then sometime in the night, I woke up with a headache. I couldn’t do much but try and sleep. When I finally got myself out of bed and to the couch, I was in and out, with ice packs on my head and only getting up to got potty or throw up. I slept for about 15 hours from Saturday night till about 6 pm last night and then slept the whole night. So far I have some lingering pain but seems to be better than yesterday for sure. People really don’t realize the hidden symptoms and it’s really hard to explain them. How do you explain MS headache and MS fatigue to someone who had no idea how it feels to try and stay awake but all you can do is sleep? I’ve tried to pin point the headache – hormones, food intake (salt, allergies, etc.) or just symptoms of this beast I live with daily.

I’ve recently tested out the “let’s tell someone new that I have MS” due to her being my massage therapist. I saw her face change into “oh no, what do I say? Oh dang. She has an incurable disease..” then the sadness came into her voice. Thankfully, I feel like I’m one that can portray that I’m all good and handle this with ease. Plus I was made to lay face down to start the massage.. Honestly, my heart sank at the thought that she was pitying me or was thinking back to her schooling and possibly realizing that my body is causing it’s own deterioration and I may end up with less and less functions as time goes on.

I mean science is making strides with stem cell research (https://www.vox.com/2019/1/15/18182095/ms-multiple-sclerosis-stem-cell-transplant) along with the set backs that twice and many people now need solutions and a cure (https://www.nationalmssociety.org/About-the-Society/MS-Prevalence)

I really do try to look at the bright side of things but some days it’s harder than others. When those days occur, I listen to uplifting podcasts like EmpoweHER by Kacia Fitzgerald. This one really helped today with feeling normal and that my emotions were relevant. 💖 https://itunes.apple.com/us/podcast/empowerher/id1444456380?mt=2&i=1000431016433

I hope you have compassion for the next person you meet and at least a little understanding that everyone we meet is fighting their own battles. I know I will try to remember that as well.

So here I am saying, if only to a few of you, I have MS, I need a cure and I will donate to help find one. I hope you’ll join me.

https://www.nationalmssociety.org/Donate

Mixed Emotions

That feeling that people are talking about you after you offer what you know about a matter that you heard them chatting about but probably are not but still that instinct is there.

Did you want to feel included and knowledgeable in this matter that you heard people discussing? Or did you just pipe in because you knew the information and thought I have that answer? After you spoke you went back to your own task but heard the whispers of laughter.

Maybe they were and maybe they were not. But your body flushed with embarrassment, now you feel like shrinking back and not wanting to add in your two cents into other conversations.

Most times I stay quiet even though I know the information as I feel like if I chime in then they’ll expect me to do the work. Trust me that has happened in the past where I know other people can do the leg work themselves but act like they can’t find the answers.

Then I feel like if I don’t chime in with the answers I’m not being helpful to my team.

I always try to give the benefit of the doubt and hope they appreciated the information and weren’t talking about me. In the end, they now have a better understanding of something and if they chose to use it then great. If they don’t, its not my issue.

I trust that the universe will always set you in your rightful path in life. I just have to remember that from time to time.

💖

The Elephant in the room..

Let me start off by saying, I feel terribly sad for the families that lost a loved one and the sweet souls that will have to live with this night of terror their whole lives.

I’m not a gun owner nor do I ever want a gun in my home. I’ve lost my father and many people who have taken their own lives with a gun. I do not care if you own a gun or don’t own one. If you are trained and know how to handle a gun that is a bonus. If you don’t know anything about them and own a gun, please take some classes at your local gun range. It’s not just for safety but for others around you as well.

Thoughts and Prayers are all well intended but these will not bring back loved ones lost or bring the terrified injured ones any relief.

Policy and Change is what people have been saying we need.

How do we enact changes? Do we call our state representatives? Do we start a petition? Do we donate to the many groups striving for gun law change? I’m truly not sure anymore because it doesn’t seem that our law makers care one bit since this the the 307 mass shooting of the year..

We need more detailed background checks, passing gun safety classes when applying for gun ownership, be more vigilant on re-checking approved applicants, this process should be like when you have to renew your drivers license. You can’t drive a car without passing a test to obtain a license. It may be bothersome for some but if individuals want a gun then checks and balances should be in place in order to have one.

Also, we need to treat our veterans better as if these people have these issues, which are in no means a valid excuse, then we as a society need to find them the help they need.

We say check in with your friends to make sure they are doing okay with handling the traumas that are arising or just daily life may be getting them down. Our veterans need welfare checks too but our government doesn’t seem to know how to handle their care.

I don’t know how to watch the news and not cry every night when it’s always terrible nor do I have the answers to fix these issues. I don’t want to continue to see these stories and one it’s just numbness felt.

I do know this cannot become our normal. We need to break the pattern. I vow to do more research on how to make a change and hope you’ll join me in doing so.

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.