Author: Jen Rios

Sacral Off-loader

I have been dealing with my latest significant disease progression since I woke up in pain on October 28. I immediately thought to ‘ask the experts’ and pose the question in one of my MS groups.

When I did not receive an immediate answer, I started racking my brain and it was then that I remembered that Jen, the nurse practitioner gave us wedges while I was being seen at the infectious disease clinic when I had my pressure sores. I remember telling her that I didn’t need them, but she very calmly and knowingly said, “You will.”

I looked through my MyChart and noted that I saw her on July 11, 2022. Well, and October 28, 2023 I needed them. Now I sleep with a sacral off-loader:


My Mom and I call it the ‘ninja turtle’ because that’s what it looks like. When my Mom helps me into bed, she puts a wedge under my right hip. When she gets up with Leia in the morning, she moves the wedge from my right hip to my left.

She will put the wedge under my right hip while I am awake, because that is my twice broken, surgically repaired knee. We have to be careful there! I am asleep when she puts the right side in. I don’t wake up; but when I wake up for the day, my hips do not hurt.

I originally thought that my hips would be made to feel better after seeing Dr. Clark but my nutrition is fine, now waiting to talk to the orthopedist. My appointment is for January 3. I’m really not looking forward to that. It’s in the back of my mind but historically, this time of year is pretty heavy with medical diagnoses…

*Oh, don’t mind my windows because I need new ones and it’s cold outside! 😂😂😂😂😂

“As Needed”

I have NOT written about our Cider mill experience, nor have I spoken about the red tape I am experiencing! The red tape, I am STILL experiencing it, and the Cider mill excursion, my Mom STILL to send me the pictures so I will just speak about my last naturopath appointment.

I was very concerned about my hips, and he adjusted me with that little tapping machine and checked my nutrition and he said, “Your nutrition looks good! I just need to see you as needed.” I loved hearing that and he told me to keep my orthopedist appointment.

I loved hearing that my nutrition was okay and I am comfortable with all of my supplements now! I am a little bit concerned about my orthopedist appointment in January, but I won’t think about that right now. I will just take the wins when I get them and this is a small one because I do not need to see Dr. Clark until I have a problem…

My Second Christmas Commercial 2023

So, this is ‘recovery weekend,’ and I have no more doctors appointments scheduled for this year! I must say that I am quite exhausted, but I am happy that this year’s appointments were successfully scheduled and they have already the first quarter of 2024 scheduled

I watched a new Hallmark movie, it was set in Scotland, and I liked it. I saw my second Christmas commercial during it:

I have seen this commercial before this year, but I never paid attention to it. I think I paid attention because I am so Exhausted, so I just let myself be entertained. I thought that was a really cute commercial but of course it made me think of the original song:

I Pillaged to today like I do every Saturday:


I thought that things would be easier, or at least that I would know what to expect 22 years in. I thought that I would feel like I was driving in cruise control… I must tell you that it definitely does NOT feel that way, but Pillaging kind of feels that way and I think that’s helping me feel as best as I can…???

NOT Handicapped Accessible!!!

‘Go Time” he’s finished this month and I have no more doctors appointment for this year!!! I already have appointments lined up for January, February, and March.

I had posted in September when I saw my internist. I asked her about and irregularity, and she said about my mammogram, it should be “Sooner rather than later.” The earliest I could make it. The appointment was for today. This was supposed to be only my second mammogram, but I am 41 and I have already had three?!!!! The biggest thing for me is, this is NOT handicapped assessable:

My Mom is the best caregiver in the world and ‘teamwork makes the dream work!’ but this was extremely difficult!! I cried. The tech thought I was laughing, but I was crying. I don’t need to leave my house again until December 20th.

Let me ‘Splain ya!

I was deleting pictures in my phone and I saw a screenshot I took when I woke up. But I have to explain that there is a method to my madness! So, yesterday I cried at that short about Travis Kelce’s reaction to Taylor Swift, changing the lyrics to her song. First of all, I don’t even know that song, I’ve never heard it other than that short I watched, but I posted that because I saw this quote on the Skimm this morning:

So, I had to explain myself because I’m really not a Swiftie… I don’t think…

NOT a Swiftie but…

I am completely intrigued by the Taylor Swift/Travis Kelce romance thing! I have never been a Swiftie per se, but I enjoy her music on the radio. My feed has been flooded with information about her so I am randomly watching things that I never would have thought that I would so I would know a lot of trivia about her. I didn’t know that she is 5’11 and Travis Kelce is 6’5.

I saw this photo not too long ago, and I could NEVER be a Swiftie just because that is way too many albums and I can’t even use mugs to drink out of anymore!

Sadly, I cannot be a football fan that I have been previously but hearing Travis Kelce talk about Taylor Swift at the news conference kind of didn’t sit well with me because that’s NOT the place to talk about that. That’s the place to talk about football!

So now, with all of that being said, I saw a short of her, changing the lyrics to her “Karma” song, and I saw his reaction and I’m NOT embarrassed AT ALL to say that I cried but I cried everything now so…

My Reins

I can’t help but to think about a 23 year old memory, at least it will be 23 years old next month. I was admitted to the hospital and I was just about to be diagnosed. The doctor came for her evening round before my Mom got to the hospital. I was just laying in the hospital bed talking to my boyfriend who was visiting me. She came in in a tizzy!

I can still clearly remember her coming in and being so upset because, “ I wasn’t even here! Did you ask [this], [this], and [this]?” I remember that I just looked at her and said, “Yes. AND I asked [this], [this] and [that].” My answer seemed to appease her, and she just said, “Oh.”

I have credited my ability to handle my business in speaking with doctors from way back to me being a Girl Scout! I had to call all of my Mom’s friends to get cookies sold! She just recently told me that she had called him all before I called them. Thanks Judy King! You were my very first sale!

I am thinking about that now because after almost 23 years of handling my business while having MS, I am starting to slow down. Wednesday starts ‘go time’ this month and I will text my Mom pertinent information on Tuesday night.

I can’t think of a better person to hand over my reins to. I just never thought that it would get this bad! For example, this morning, when I sat up in bed, I could not even speak my text to my Mom because the muscles in my mouth did not work at all. Instead, I texted her, “Just sat up.” and it took me a long time to get those words typed!

Eh.

I can’t believe that I will pillage tomorrow! The days are all running together, and this is startling me a little bit I awoke to left hip pain. My best friend texted me this:

Ami and I worked together at dfcu financial credit union in 2001, just after I had Sean. I met her at the copier, she introduced herself, and I was not very cordial. I was irritated about what I cannot remember now. She made Sean’s first three Halloween costumes!

MS is REALLY getting real for me now…