Month: October 2022

Ahead of the Game

So, I have changed my profile picture on both Facebook and Twitter four times but I just want you all to know that I wanted to actually wear the shirts I bought at the last T-Shirt party I went to hosted by my Facebook friend Jennifer Lavender-Shott. And here are the shirts I bought back in July I think:

I saw this shirt the previous party so I had to get that especially when the new one just came out!!!


I am not my son, Sean, the only person I know who looks good in orange but this is a Halloween color so…


I wasn’t even wearing my Contacts or even my glasses when my Mom took this picture!

I was bummed when I received this shirt from Jennifer‘s party last year but this shirt is so comfortable that it didn’t really matter that I couldn’t read it but I still rocked it anyway! Now I can add these three new shirts to my three old shirts from my Facebook friends to my illegible one that is still so comfortable!!!

I still have MORE than two weeks of movie watching but I am ahead of the game that I have already broken in my new shirts!

***By the way, my Mom is an EXCELLENT photographer! She ALWAYS makes me laugh!!!

A Slow Recovery

So, I had a virtual appointment with my speech pathologist on Tuesday and I had a virtual appointment with a nutritionist. I thought I could have two virtual appointments in a row because I did not leave my house at all so I didn’t think it would be a problem. Well, I was wrong!

I never thought that it would be difficult to speak and having an hour long conversation is quite difficult. I actually just had a half hour video visit but it was still quite difficult!

I was tired Tuesday night for sure! But then I got ready for Wednesday. I was extremely nervous about this appointment! My ability to chew has been increasingly diminishing. I knew that I was not getting all of the nutrients I needed so I knew it was imperative to speak with a nutritionist.

My Mom recently told me that she thinks that Meira sees a lot of patients who are dealing with worse issues then with what I am dealing with. She told me that I must be one of her ‘shining stars’ or some thing. I agree with her! Meira told me that she is very nitpicking with me because I only need to see her once a month now to make sure that my speech is Chris for in clear! I am grateful that I only need to see her once a month but it is exhausting! And on top of that exhaustion is the fact that I used to speak with such ease.

I had my appointment with Sara the nutritionist and she sees all of my information through Henry Ford. She actually saw how much I have weighed for a while. And she noticed when my weight loss started probably in about 2018. We talked about things I can do. I am switching to a smoothie diet because I cannot chew any longer.

My mom asked me today if that ability will come back and I told her that it would not. So, it’s a slow recovery from my back to back virtual appointments but I have to gear up for next Wednesday and Thursday for my haircut and doctor’s appointment. With both of those appointments completed, I can’t stop hearing this song in my head because all of this is so heavy!:

Back to Back Virtual Appointments

So I just completed my second virtual appointment. I had a virtual appointment yesterday with my speech pathologist and today I am met with a nutritionist! I thought that I could have back to back virtual appointment with no problem because I am not leaving my house but… That was not the case and I am going to crash hard tonight! Maybe I will explain myself better tomorrow…

Exhausted.

I had a virtual appointment with my speech pathologist, Meira. It was good that I had an appointment because I am absolutely exhausted right now!!! As we talked, she let me know that right now, I am 100% intelligible. I explained to her how terribly exhausting it is and I am the person who used to have, “Talks too much” written in the comments on her report cards in grade school!!! She agreed that it is exhausting but that I am doing a good job. Now, I need to sit here and not speak for a while…

Rando Tune #30

I like waking up and clearing out my Facebook alerts and my emails as well as alerts on Twitter. I saw this one:

The song from Lit began playing in my head immediately and I was back in my senior year. I had seventh hour prep so I left school early because I had enough credits to graduate. I borrowed the CD from my friend, Dominic, and I played it on loop for probably a week!!!

I responded with this:

I love that I Got to listen to this song all day long!!!

“You Think that I have NEVER had My Bruises Pressed?!”

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!!!

#MyGirlL: Listless

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!

“Mine Too!”

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!

Concerned

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! !!