Author: Jen Rios

We are in the process of changing Leah’s food. Today it is 50% old food and 50% new food. She needed a Novel diet so we’ll see how this works. She is still coming down off of the Roids she was on but at least she is not scratching anymore! My poor girl!:

My Mon noticed this a couple days ago but last night is the day I recounted a story to her from my memory banks so I figured that I would tell it again here even though I KNOW I have shared it but it must have been seven years ago by now!

I got my blood drawn after my dermatology appointment last Friday. I remember that I had a conversation with the tech because she had hair like Eve the rapper. We laughed about that. She had an hombre of bright red on her hair. I recounted that I would play a certain song when me and my girlfriends would pull up to a party and we both laughed because we knew what we were talking about.

My Mom noticed right away that I had a large bruise on my arm but I did that think to talk about it until today. This is what my bruise looks like right now:

The bruise has lessened in severity because I take a supplement called Rutin that helps with bruising daily.

last night when my Mom and I were getting ready to get me into my bed, I reminded her about the time she ran me into the door knob of my bathroom so I got a huge purple/black bruise on my left upper arm. It really hurt!

Then, I told her about my Barwis story with Phil. It was back when I was training with Adam at Barwis. Back then, I called him, “Phil” because that’s what I thought his name was and then it just stuck even when I found out his name was Adam. We were at the Kaiser machine and he was sitting on a stool facing me as I sat in my wheelchair. My arm was hurting and in passing I pulled my sleeve up to show him my bruise.

I told him about my mom running me into the door knob and how much it hurt and then he said, “Wait, let me see that again” to which I responded with an emphatic ’No’ and then I added, “You think that I have never had my bruise pressed before?! I have four older brothers!!!”

I remember that we both laughed when I told him that! Man, growing up with those four older brothers REALLY was difficult!!!

Leia has been itching like crazy! The vet suggested that we bathe her twice a week. Even with all of those baths, she still was scratching like crazy! And she began to smell a little bit! When my mom called the vet, she put her back on some steroids so #MyGirlL is just listless these past few days:

We couldn’t figure out what was going on so my Mom spoke with someone at Chewy and her dog had the same problem so my Mom decided to change Leia’s food! My mom spoke with the vet and talked about the food change and she agreed that a, “Novel diet” is what Leia should try.

This is the food we are going to try but the best thing about it is that it is $60 less than her prescription food that she has been eating for the past year!

I went to see the dermatologist on Friday and I had my first ever academic conversation and it startled me! It both startled and pleased to me!

I have written before about wearing my Michigan sweatshirt downtown to my MRIs. I was downtown at the New Center One location to have a follow up with my dermatologist who was following my pressure sores. My sores are closed but still so tender! She had me ask my PCP for a referral to the wound care clinic regarding future sores which is a possibility for me now.

It all started when she opened the door after she knocked. I called to her to come in and as she walked in she saw me sitting in my wheelchair in my Michigan sweatshirt. She said, “That’s my alma mater!” To which I responded by smiling and placing both of my hands on the letters of my sweatshirt and I said, “Mine too!”

She even had a follow up question as she came in. She asked if I have a masters degree which I responded smiling again, ”I do.” She thought that my Mom has done an excellent job with my feet and they are healing beautifully! She told me to have my PCP refer me to the wound care clinic which I did today but I was not able to leave a message so I will call again tomorrow.

Because I am 40 now, I am starting to get skin tags on my neck. That is problematic because I wear a medical device around my neck and it gets caught on the skin tags and it hurts. I have been wearing it for a couple years now. We had a mishap when I was alone so my mom called to get me a medical device that day. I mentioned that to my new PCP and she told me to tell my dermatologist that I was seeing in a week. That was my appointment on Friday!

Dr. Rambatla told me that because it is hurting me because of my medical device around my neck, she is able to remove them. Otherwise, it would be considered cosmetic! I thought that was a little crazy but was glad she was going to take them off. And she came toward me with her tweezers and scissors she asked me what my masters degree is in.

I really haven’t talked about my degrees very much. Everyone who I worked with knew what my degrees were so I didn’t have to talk about it but I appreciated being able to say that to a complete stranger. A complete stranger who is now a kindred spirit because we are fellow alumns!

I think it was last March madness where Sean and I were talking and he said that it must be nice that I always have a team to root for! I smiled and kind of laughed and sad, “It is!” I Thought of that after my appointment. I have such a long road with doctors and MS I’d like to escape that fact for a minute to think about college. My Mom and I were speaking and somehow we talked about the fact that I have a 20 year old son which very much amazed her! I have told you that I look a lot younger in medical situations!

So, on Saturday night, well actually, Sunday morning at 2:35 AM, my blog web hosting expired! When that happens, all of the data in my blog will possibly be lost!

I started my blog on November 11, 2013. That’s almost 9 years of writing ! That’s a lot! I started my blog to let Parker know how I was doing at Barwis. I added music in one thread. Now, after my last knee surgery, I am no longer working out at Barwis and my thoughts of walking pretty much gone which is sad.

My blog now is a way for me to keep my sanity because I no longer work and I live in my memories so I love to write them out. Actually, dictate them because I never could type!

The biggest concern I have is how long it had taken me to recover from ONE doctor appointment! I have been having my ’2 fees’ since June but I added a second doctor appointment and maybe that’s too much; it took the entire weekend to recover and Sunday, I just had my first double feature of the Hocus Pocus movies so I could just sit and be entertained.

With my disease progressing, this really has me concerned! !!

Today, I had to leave my house pretty early in the day. I made this appointment in July so I needed to keep it. After just having not very good sleep, I rubbed the sleep out of my eyes to get them to stop burning as I took my vitamins, drank my water and my shake. Protein shakes always need chasers!!!

I was up and sitting in my chair by 730. I haven’t awakened that early in years! But yesterday, my Mom called Medicare to see if my ‘medical nutrition therapy‘ appointment would be covered and when we found out that it would be covered, I called them this morning! I was able to make a virtual appointment for October 12.

when we got to my dermatology appointment, Dr. Rambatlah commented on my sweatshirt. She said that was her alma mater. I smiled and I said that it was mine too and she asked me if I had a masters degree and it sounds good to answer that in the affirmative!

After my appointment where I found out that the skin on my heels looks beautiful but may possibly remain pink like they are now.

My AMon is in Meijer right now to pick up my prescription from last week and she’s getting groceries. So I am sitting here thinking and all I can say is that I killed it!

Nutritionist appointment: check, dermatology appointment: check, blood work done :

check, picking up my prescription for my pain pills because my feet still hurt terribly!: Check! I most likely will pass out in the car until my Mom gets back because I need to regain some strength for tonight because I don’t want to poop out for the Hocus Pocus 2 Premier!

I have my return appointment to the dermatologist who has been treating my pressure sores. They are still there! Although both of them are closed, they are still so tender! I am reminded of the excerpt in Fhe Hunger Games and I am reminded of the description of the raw new skin and how much it hurt to the touch! It’s the same thing!

I was only able to get an appointment at 11:15 in the morning tomorrow. That is the day that Hocus Pocus 2 comes out on Disney+! Sean is going to come over to watch it with me and my Mom so I am so excited because my, “2 Sacreds” are going to see this movie with me!!!

So, I have to leave the house early tomorrow to go to the doctor and then the new Hocus Pocus is coming out I am trying to control myself so I do not poop out! Wish me luck!!!