Author: Jen Rios

Mick Fleetwood

Last week, I dropped my mouthguard halfway through pillaging. I have to wear my mouthguard as I distribute my pills because I grind my teeth. I’ve been wearing a mouthguard since 2011 when I sleep.

I thought for a moment because my Mom was sleeping and it was just us two in the house. I still had four pills to distribute. I thought for a moment and decided that I would put my pills in my pill box like Mick Fleetwood:

That’s right, I distributed those pills with my mouth gaping open! I got it done and today, my mouthguard almost fell off of the table as I was drinking my shake between pills. I need that nutrition as I am concentrating so hard on the pill distribution.

Sean was here, but I did NOT drop my mouthguard. I have always dug people’s drumming faces and I think this one was kind of funny. It helped me pillage without grinding my teeth though.

I got my mouthguard in 2011 when I was seeing my MRT (muscle release technique) therapist. I called him my ‘rub-er,’ but he did not like that. I remember going into Parker‘s room and telling him that I have never been in a fight, but if I was, this is what I’ve feel like because I feel like I have been punched in my face! My mouth, especially!

He rubbed my face and I made an appointment a TMJ at my dentist. He was not retired then. I had to pay for it myself! I should have worn my mouthguard after I got my braces off and then I would have had one!

“The Jennifers are in College?!”

I came across this email tonight:

I wanted to see what it said because I wondered if my name was popular when I was born and it made me think of Dr. DeGregorio when he asked my class that had five Jennifer‘s in it of like 25 people maybe. The Jennifer’s are in college?!

Sure enough:

I read a paragraph after seeing that have of the entire decade was Jennifer:

“Stare at a Memory”

I was listening to my Gavin DeGraw playlist a while ago. It was still August I think. That first album reminds me of our first apartment. I had just gotten that CD and I listened to it often! I can still SEE my first apartment. I remember that I was more able about it than and I didn’t think I would get to where I am now EVER!!! Back then, I thought I would live a full life and get married and have a couple more kids. That didn’t happen and I’ve mourned that so long ago, but I do live in my memories and I have been for a while:

Continuation

Today was a continuation of handling my sh*t. I received a message at 7:12 this morning from Dr. Chamas’ office. I was able to get all the things I wanted done. After I made my mammogram appointment, I called my dentist to schedule my January appointment:

I can’t believe I’m already scheduling 2027 and it’s only the beginning of September?!

I think I can schedule my state ID renewal in October? I will look into that. It is a lot of strange that it’s a continuation of #HMS but I’m so grateful that I can STILL do that. I remember when my mind went blank when I was paying my bills right after I got paid. I stopped doing everything and then I had to break up how I pay my monthly bills so I can keep it straight in my head. I am so painfully aware that MS is a neurological disorder. I feel that now 25 years and nine months in…

Yesterday, I told my Mom that I am getting a little stir crazy and that concerns me a bit. Dentist on the 15th. Get weighed on the 22nd.

STILL #HMS.

Today, after I stretched my hands and arms and drank my breakfast and lunch, I called Dr. Clerk’s office and ordered my September supplements. Then I called Henry Ford billing because I have a new charge. It’s a $300 charge. That was my endocystoscopy that I had in August.

I did feel accomplished after I did all of that. I also messaged Dr. Chamas’ office to get a referral for my mammogram for November and I requested a flu shot for my appointment on the 22nd.

I really can’t believe this is my life now but it is. MS 100% of the time. I can’t believe it is so hot still!!!

This prolonged heat is affecting me. Yesterday, I woke up and it felt as if I had a vice on my head. I took one of my 500 mg of Tylenol yesterday morning. I take them in the night to help my knee to feel better when I sleep. I no longer can take the ibuprofen 800 because it gave me gastritis. It was eating my stomach lining. It DEFINITELY took away the pain though. I will get an endoscopy when I have to get another colonoscopy. That’s not for a few years. 2032?

I have always said that I, ‘HMS.’ I think that I have been saying that since was about 13. It stands for Handle My Sh*T. I added the hashtag a few years ago and I only text that to my Mom and to Sean.

I’m trying not to swear so much now. It feels good that I still can do this. I can still handle my sh*t. I think that it’s too bad that it’s ALL Medical and ALL expensive!!!

Today was second day that I wore my -8 contacts. My vision is getting a little wonkier and it’s starting to make me nervous. I remember, I knew a young woman who wore contacts in a -10 prescription so I’m not nervous about that but I am a little bit nervous about my dry eye disease… I cannot believe that I still hear that HORRIBLE doctor who told me that I had MS In such a HORRIBLE way!!! I was seriously just a kid. I hate that I have that memory, but it is seared into my brain forever. It really sucks that it’s true!!!

NOT the Wake Up Call that I Wanted

I think it was a couple weeks ago, where my feet ached whole bunch as I was sitting in my chair. That ache has not gone away since. I think that my neuropathy is getting pretty bad.

I first experienced this in the summer. My feet were freezing and I couldn’t understand why. It felt like my feet were an ice cold water to my shins as I tried to sleep. It was terrible and I had my Mom cover my feet because they could not get warm. Or at least, that’s what I thought.

I remember that my friend Suzie told me recently that her late father told her that neuropathy is a pain he could not get used to. My Dad had neuropathy, but he never talked about it. I remember my Mom using my Dad socks in between his toes before she helped him put his shoes on.

I don’t remember the last time I put my shoes on myself. And I never thought that neuropathy would be a part of my life, but it is. It hurts and there’s nothing I can do about it. Actually, my Mom uses a massage gun that brother got me) at night before I fall asleep.

She rubs it on the soles of my feet and recently, I fall asleep while she’s doing it. I don’t stay asleep, but I sleep while she’s doing it because I am relaxed. ‘Sleep don’t come easy’ for me and of course, I thought of this song:

It’s just another part that always hurts. It does. It always hurts. I noticed that a couple weeks ago and it hasn’t gotten better and I don’t think that it will. My nerves are just getting more damaged by the day.

I think a little bit before the summer when my feet were in ice, I felt pinpricks in my big toes. That’s what it would wake me up. I don’t wear my compression socks at night, so that’s why they feel like needles in my toes. Not the wake up call that I wanted, but it’s the one that I get 25 years in… #MSsucks… 😒😒😒…

Managing My MS

I pillaged today and I did not drop any pills. I haven’t done that in a long time because I think that I put my pills in my pillbox a lot slower than I used to. It takes a little bit over an hour. I think I am going to see Dr. Clark in April next year.

The first quarter of the year is scheduled, or rather, reserved because I have to get my teeth cleaned in January, I need to get my state ID renewed In February, and I need to see my internist to get weighed in March. I thought that I would have an April appointment scheduled, but I got word that I don’t have to see that doctor until August.

I never thought this would be my ENTIRE life, managing my MS. But it is. I hope that I can do this for a long time, putting My supplements in my box. While I did it this week. I will call on Wednesday to order my supplements for September.

A Little Bit More Mourning

I seriously have the same exact day now that I am homebound. Today was the same as yesterday, but yesterday, I was more accepting and today it’s a little bit more mourning. I did see this video that popped up on my phone yesterday:

I am pillaging tomorrow, so my day is a little bit different, but I’m not leaving the house until September 15 for a dentist appointment.

I Didn’t See That One Coming

I’m still right in the middle of vacillating between acceptance and mourning my current situation. I think this will be a constant battle for me, but I think today I am leaning towards accepting it more than mourning it. This will change, probably a little bit today as well.

My daily routine is the same every day. I wake up and pray as I drink two shakes (Breakfast and lunch) because this heat is STILL unbearable. I drink my first after taking my morning vitamins I listen to an audio rosary. Then I stretch my hands (with my therapy putty) and then I stretch my arms to a third rosary and then take my lunch vitamins. I continue my daily prayers off of the Hallow app and then I can begin my routine to get ready for the day with my Mom‘s help.

I watched Voicemails for Isabelle and I realized that the song that is playing when her mom tells her that Isabelle has died is the same song from that Guinness commercial!!!

I searched my blog for that commercial to repost. I didn’t find a couple, but I watched that commercial on YouTube and I cried! This was back when I thought that I could be physically able to live my life in my manual wheelchair. Things didn’t work out like that! I am a Power chair now and I have been since July 2018. I didn’t see that one coming, but I guess I kind of did.

Here is the song: