Author: Jen Rios

This morning, as my Mom was getting me out of bed, as soon as I used the remote to make my bed completely flat, my body started jerking and I started to grunt because it hurt so much so that my eyes began to tear.

Waking up and getting out of bed is becoming definitely more difficult! It seems as if I am tearing up almost on a daily basis. My Mom gets me into my chair, I push the joystick all way back while it is stillin the seated position so that I can get back into my chair to be properly sitting in it.

Once I get all the way back into my chair, I move it downward a little bit and fasten my pelvis stabilizer. Once I do that, I put my chair even further forward so that I am leaning forward so my sweatshirt will fall down my back.

This morning, as I was sitting up in my chair after getting my sweatshirt down my back it takes a minute for me to engage my core to sit up and I can’t do it all the time but I did today. Just as I sat up in my chair with my sweatshirt on, and my pelvis stabilizer fastened, I looked at my Mom, wide eyed and exclaimed, “That was INTENSE!!! Because it really was… This is getting concerning… #MSsucks!!!

This happened today, so I only have one last bag-o- chapstick!:

It’s Salted Caramel. That’s not my favorite! I finished my Chai ‘bag-o-chapstick’ today and unsealed the tube in my box so now I can go back to using my box:

This happened on Halloween:

That was my Vanilla Maple, chapstick. So now I am left with only two bags-of-chapstick left.

I have a bit of Chai and Salted Caramel. Salted Caramel is my VERY LEAST favorite, and I only have a little bit of a tube and one full tube before I never have to use it again, because I don’t like it!

I’m not feeling well, but I am so happy that my Beeb is 22 now and I was able to make an orthopedist appointment for January to discuss the pain, I am feeling in my hips, which is quite concerning for me!!!

Today is Halloween and it is the last day for me to watch Hocus Pocus. I have not been able to enjoy it this year at all and I will explain it in November. Because my Mom came in today from blowing the leaves, and she told me that Ray called her from National Seating and Mobility and my wheelchair was approved yesterday.

I cried when my Mom told me that! We have been having nothing but trouble since August 31! But I have a movie to watch now, I think three is a charm and I may get a new wheelchair by Christmas…:

And this picture is proof ofhow badly my hips are feeling! That’s the biggest smile I can give right now! I put in a message to my internist to speak With an orthopedist, but there might be a specific one I need to talk to just like for the other specialties, there is an MS doctor.

A friend from high school, but made this sweatshirt, so I had to rock it today! And for future Hocus Pocus viewings!:

Who knew that my short hair was so wavy?! I sure didn’t!!!

I clearly remember going to the infectious disease clinic at Henry Ford downtown. I somehow felt like I was in the 15th century or something. But we spoke with Jen the nurse practitioner, and she is the one who treated me for my pressure sores on my heels. Those stores lasted in my feet from April till November. I think we saw her in June and July.

I ended up seeing her twice in clinic and the second time we saw her, she gave me two wedges and a transfer sheet. Well, it was called something like that. My Mom and I called it, My “Ninja Turtle” because it is green with brown padding, so it looks like a ninja turtle!

My Mom told her that we do not need that yet, but she just calmly said, “You will,” and urged us to take it. I used it last night! I never would have thought that it would get this bad for me with this disease, but two months[to the day] shy of my 23rd anniversary,

This is where I am. I am grossly reclined in my chair to keep my hips from hurting. I’ve definitely dealt with a lot of pain these past 22 years of having MS but this pain is so new and so different today that it has me seriously scared right now…

I awakened this morning with both of my hips hurting tremendously! I told my Mom that I had to get out of bed because I’m still going to be in the same position. She reminded me that I can recline in it. Well, I did, and my hips still hurt! There are tears in my eyes. I my Mom will call Diane the occupational therapist who fit me for my wheelchair. (that is a big huge mess by the way, I should have gotten a new chair in July). I asked the experts in my MS group:

I’m still waiting to get replies in my MS group, but this new development really has me concerned!!!