Author: Jen Rios

Recovering

Yesterday, I had my doctor’s appointment. We had a rough time getting ready to go but it was a great appointment! So now, I will spend my day recovering from yesterday‘s events. My sister-in-law texted me and her and my brother are going to buy my Mom and me dinner for my birthday! Who says that birthdays don’t last an entire month?!

#MyGirlL: My Barometer

So, my Mom took this picture of Leiafter their walk:

My Mom told me that the weather was beautiful outside and we laughed at Leia resting because it was so warm. But I told my Mom that I am STILL cold! Tomorrow, I have a doctor’s appointment so I will need to leave my house. If Leia is my barometer, maybe I need to change chapsticks…

48° is NOT Warm

So here is the deal, I finished my Vanilla Bean Chapstick The night before my birthday;

I was thinking about switching over to my Pomegranate chapstick because it will be after my birthday and spring is coming. But, the night before my birthday, it was 19°. So, on my birthday, I opened my other Vanilla Bean chapstick.

My Mom told me that today it is 48° outside and 48° is NOT warm for me. Even today, I still am wearing winter hats in my house and my thermostat is set at 73°. I blame that on a couple of things but my disease progression is not helping and the fact that my windows getting older isn’t helping either. I have a doctor’s appointment on March18 so maybe I will smell spring and will change over to pomegranate then but for now, it’s still cold so, Vanilla Bean it is.

I AM 40 Now, so…

I have known four years, almost a decade I think that anytime I get together with my family, I need a day to recover afterward. Well, now I am 40 so … it’s looking like I will need two days to recover because yeah, I still need a little more time to recover but I will leave you with these pics from my “2 Sacreds” celebrating with me:

i’ve just been trying to collect myself since celebrating and I have been listening to my U2 playlist on Apple Music on shuffle and I heard this one and it made me smile and remember going to a comedy show downtown on a double date:

So, all I have been doing for the past couple days is trying to recover from the excitement of all of the birthday wishes on Facebook and on Twitter. But, I am 40 now so… seems like it’s taking a little longer now.

A Nickname

I remember my Mom telling me once when I was young that she chose the name Jennifer because it was the most popular name the year I was born and she liked the fact that I could be called Jennifer, Jenny, and Jen.

I have been called all three of those names throughout my life and all very different situations! My family, calls me, ‘Jenny.’ If you knew me in either grade or high school, I was also known as, ‘Jenny.’ It wasn’t until college that I started introducing myself as ‘Jennifer’ because people were not understanding when I introduced myself as, ‘Jenny.’ My cousinT, Shannon, calls me ‘Jennifer.’ I received birthday wishes yesterday using all three of those names! It’s totally comfortable for me because that is how they knew me. I’m mostly, ‘Jen,’ now that I’m 40.

But there is one name, a nickname that I was given by one of my older brothers when I was 13. My brothers have always called me crazy and mean names but I didn’t really think about it when he called me this so I didn’t pay much attention. But, I did not think that this nickname would stick all the way to my 40th birthday celebration! But, it did. I am a 40-year-old woman who has been called this for the past 27 years and I guess I really don’t think anything about it which is kind of nuts!:

My “Birthday Eve”

From the moment I woke up, I was struggling to get ahead of my pain and discomfort! NOT The “Birthday Eve”that I wanted!!! It took my entire prayer time today to begin to overcome it. I put on my Apple Music playlist to try to relax a little more.

Well, it worked! I just clicked with what was playing last night and when this song started, I was back in my first apartment and we had just moved in! I was in the kitchen making dinner and checking on the wash that was just off of the kitchen.

On days like today, I like being able to escape to my memories because I can crystal clearly see myself walking around my first department! So it’s in these moments that I can escape to my memories to be able to handle the reality of what is happening right now. That, being my pain.

This song sparked my memory and I’ve been living in it for a while now!:

This is the last post of my 30s!!!

“Survival Mode”

I was talking with my Mom yesterday and I don’t remember but somehow I gave the answer of, ”That’s because I am in, “Survival Mode” now.” I think it was about me going somewhere. After I said that, tears started welling in my eyes.

The real weight of that statement hit me and because I have PBA, I cry a lot and there are many times that my Mom will ask me why am crying and I will answer, “I don’t know!”

I COMPLETELY knew WHY I was crying but I just let the tears flow and let my Mom believe that I had no control over them. It is extremely difficult to realize that so much in life I cannot partake in anymore. I did however, get a haircut yesterday!

I got the haircut and two eyebrows for my 40th birthday on Saturday and I’m excited about that! But, because I left the house yesterday, I have to recover today. The back of my sweatshirt is itching me but I can’t even attend to that! I may be in, “Survival Mode” now but I have standards!!!

#MyGirlL: Moral Support

As I have written extensively about the change in my sleeping position, there is also a change in my Mom helping me in and out of bed. It is quite involved, now!!! And with that added involvement, it has also added groans on my part! My Mom finally got me up and seated just as I turned my head toward the living room to see Leia trading toward us! Her little ears were at attention! My Momj heard her feet and said that if she could go hands, then she could be of assistance. I told her that she is here for moral support. I told my Mom that Leia is our therapy dog!

“Trapped in Myself”

I had a virtual doctor appointment today with my speech pathologist. She had to change our game plan because I was having a lot of difficulty speaking and I was not able to read from a children’s book. I was stressed out! It started last night and at the risk of having this blog post also being, “A downer,” here goes:

I was stressed out because as I had written before about a change in my sleeping position and the fact that I sleep like a vampire now. But what was most unsettling yesterday is the fact that I was wide awake . REM sleep hasn’t been a thing for me for at least a decade! My body cannot relax enough to allow sleep and I’m okay with that. It just really stunk yesterday that I was so awake and I thought of this video:

I remember seeing this video when I was a kid and I remember the guy laying on the bed and nodding his head to the music. Well, not really but I remember his head moving and I remember him talking during the video. Today, after my speech pathologist appointment, I watched the video again because it has been at least 30 years since I have seen it. It was just like I remembered it and I listened to the soldier talking. I watched the video three times. I cried all three times!!!

My situation was not caused by a landmine but it is similar. So much has been taken away from me already and I actually talked to God last night about how much worse it will get I really am trapped in myself now…