Month: November 2021

Part of THIS Club

I have had a lot of stuff in my head since Tuesday and it translates to me having more MS-y days. because I have not been feeling well all week! But today, Sean came over and my Mom went shopping. When she came home, she had me listen to a song and she told me that it was, “For you.” I was familiar with the song but I never listened to the words because I do not have a daughter. But hearing my Mom tell me that it was for me, make me cry as this song played and my Mom reminded me of a time that she saw it was, “So tender.”

It was right after my Abuela died and before my aunt died. Her mother and her sister. When we would drive around doing errands or something, I was only seven when my Abuela died and had just turned eight four days before my aunt Rita died. I was allowed to sit in the front seat back then (because I am so old) and I would ask my Mom as we got into the car, “Are you going to cry again?” And as we fastened in, she would start to cry.

I would just sit next to her silently and put my left hand in the crook of her right arm at her elbow. she would continue to cry and she would put her left hand on top of mine. I can clearly remember doing this more then we’re just gonna go to the 30 years ago. I think it’s sad that I am not part of the club because I do you not have a daughter but I really liked being part of the club here because I AM my mother’s daughter:

Banking my Voice

I first thought of this the moment I heard Meira say it. She told me that we were going to, “Bank my voice.” I was very familiar with what that is and why it is done. I just couldn’t believe that it’s really gotten that far for me! She told me that it may not be necessary but we should do it, “Just in case.”

That kind of struck me. Is it really like that for me?! I remember watching A Football Life about Steve Gleason. It was talking about when he was going to scale Machu Picchu with his wife, friend, and another person newly diagnosed with ALS. I think that Steve Gleason had already gotten the voice control apparatus on his wheelchair because he could no longer speak. I remember seeing the other guy who was going on the trip who was newly diagnosed and he could still speak but it sounded odd; it was the beginning of not being able to speak.

I also thought of Stephen Hawking and I remember seeing The Theory of Everything. The thing I think about most whenever I think of that movie is when he was addressing a college class. A girl in the front row dropped her pen. In the movie he sees the pen, gets up out of his wheelchair, and gets it. I think about doing that all of the time, especially now because I drop everything now.

I was thinking about both of these men as Meira handed me the list of things for me to read. I was completely reminded of myself with her organized white binders. I used to do that when I taught. I did give her a tip for future patients. I told her to print them larger because some of the difficulty I was having was because the print was too small for me to see.

I guess I have been thinking about this appointment since Tuesday and it is a little startling. That’s how it is now?! I can only handle thinking about these big changes in little bits. I thought about reading children’s books for my future grandkids on audio but I think the time for that seems to have passed. Some days I speak normally but it seems there is just a hint of, “NOT normal.” When my voice is, “NOT normal,” there are only a few people who I speak to. It is a very short list and only consists of three people. My Mom, Sean, and my best friend, Ami. All of them are patient as I struggle to form the words in and get them out of my mouth. It was gradual and I haven’t really thought about it. It’s been a long time that Sean would order takeout for us and my Mom would speak to doctor’s offices for me. I start my virtual appointments with Meira for speech pathology on December 7th and I wonder how that will go? I have 10 hour long appointments scheduled.

A Difficult Time

There are many things that I am still trying to digest from my speech pathology appointment last Tuesday. But thinking about things that went on that day not related to my appointment, I am having a really difficult time processing those events. I think I will just explain them here and maybe get more clarity as I write this blog post. I hope…

I learned a while ago that I need to schedule when I am going to leave my house. It takes a lot out of me to be, “Out in the world.” it has been a really long time since I have been, “Out in the world” and a few things have reminded me of how inaccessible the world is. I am having a difficult time processing this. Or better yet, I fear that I am no longer equipped to be out in the world…

To better process this, I need to think about when I was out in the world every day. What I am noticing as my disease progresses is that my eyes are really being affected. I thought about it and back when I used to teach, which was a long time ago, I used to teach with just one of my overhead lights on. What I learned after a while is that the fluorescent lights are a little much for my eyes to handle. Being in the classroom all day long, it was easier on my eyes to have just one overhead light on. That worked out because my first two classrooms had two light switches to control the lights. My last classroom, however, only had one but there were so many problems in that classroom with temperature control that I didn’t really think about my eyes hurting because I was freezing!

Anyway, after my appointment with the speech pathologist, because we had rented a van to accommodate my motorized wheelchair, I was going to make another stop while I was, “Out in the world.” I knew that making the day a, “2fer” going to be extremely difficult but I was going to push through! I had finally had money to purchase a new TV because mine is dying and I was also able to get an iPad because my eyesight it’s failing so it’s easier for me to work on an iPad opposed to my phone. Rather than just buying them online, I wanted to have a sales person at Best Buy explain the best option for a TV for me and I wanted to get my iPad programmed.

That whole process took about three hours. It was not until I had difficulty exiting the van on the ramp and then seeing my door opened to get back inside and there were halos around the lights on my chandelier. It all made sense to me after I saw that! After I was able to get back into my house, I immediately took my contacts out and placed my hands over my eyes for probably close to 30 minutes to let my eyes calm down. You see, now, when I go out in public, and pretty much all the time when I’m in my house, I have to wear glasses in addition to my contacts. Let me explain this new development:

When all of this started happening with my eyes probably a little over a year ago, I clearly heard in my head the first doctor who told me I had MS. ”Look, you have MS, you are going to go blind, and then you are going to die.” My Mom and I recounted that story to the last three doctors I have seen this month. None of them can believe that that is how a scared, 18 old girl was told that she had MS. When we told the podiatrist about that, he looked at my Mom and asked, “That wasn’t in this hospital, was it?!” My Mom nodded and said, “The very same one.”So, five years ago, when I still taught, I could just turn off one of the overhead lights well I thought and there were some days where I would teach wearing my sunglasses. My bosses at the time did not mind and they understood because they knew of my MS diagnosis before I started working there.

Yes, there are a whole lot of fluorescent lights on in Best Buy! I cannot wear sunglasses while shopping because I need to wear glasses with a prism over my right eye in addition to wearing my contacts now. So, for the three hours that we were in Best Buy, I just had my glasses and NOT my sunglasses on. When I came home, I realized what was going on with my eyes once I saw halos around the soft lights in my chandelier. I remember when LED lights first came out and they were cheaper do use in your house but they hurt my eyes so I can’t use them.

We made follow-up appointments with the speech pathologist virtual so I can remain in my house to have them and now that I have an iPad, that will be easier. But all of this is difficult for me to process! I told my Mom as she washed my hair that, “My body is shutting down.” She told me that hers is too and that everyone is but I don’t think she understood how hard this is for me! I’m just having a difficult time…

Handsome Plumbers

I had some plumbing done at my house today. A team of two handsome plumbers did it. I haveALWAYS have had handsome plumbers do work in my house though! A while ago, another plumber was also handsome but today the first handsome plumber I had in my house to do work on my shower when I first bought my house came back and he had a helper. I think the helper was kind of good looking! In fact, I know he is! I know because he is my son and he has the same genes as me and The other two plumbers (two of my brothers!)

My oldest brother had talked with my Mom to do the work in my house and they came by today! I will say that it was really cool to watch my son work and speak a different language (plumbing) with my brother the whole time they were here! I think my maternal pride kicked in or something! My house was their final job for the day so Sean stayed back and visited with me and my Mom for a while!

The work he did was in the kitchen sink so I really haven’t been affected by that. And the other odds and ends fix was the vent to my dryer. My Mom and I have been old-school rocking it for the entire pandemic like pioneers and hanging our clothes to dry. There are clothes in the dryer now that will not be need to be hung to dry and my Mom washed the dishes really quickly today! So I guess it feels like everything is coming up (Jenny Rios) right now!

#MyGirlL: Getting Colder

Last night, I had difficulty transferring in the hallway because my right hip joint gave out and I kind of gasped. But, wouldn’t you know it that #MyGirlL bolted to the doorway of Sean‘s room to offer her help!

This girl is SO sweet and it IS getting colder so, she NEEDS A coat! I ordered one for her yesterday. Sean makes fun of me but I’m so excited for her coat and pictures will come once I receive it!!! I ordered it from doggiediva.com and I am so excited!:

Dysarthria

So, I had my appointment for speech pathology yesterday. It was a good appointment and there are a lot of things I still need to unpack from all the information she gave me! The most striking thing was that she seemed like she was like me when I taught. She had all of her documents in sheet sleeves in a binder. She had them all organized and ready to pull out to use whatever one I needed. She had a list of words for me to read from. She recorded my voice on her phone. I have read the list of the first 30 words before she told me that I could stop. It was like the test I used to give my reading kids in the beginning of the year!

After I read the words, she help me read about 10 sentences and lastly, she had me read a paragraph. One thing I noticed about these tests and I told her was that the words needed to be printed larger because I was having difficulty seeing them. My MS call has greatly affected my eyes recently. After we did those things, she had to leave the room to get A release form for me to sign and she told me she was going to record me just talking with her for about three minutes. I was completely comfortable with that. I like this woman! She reminds me of a friend I had a nice cool. I was comfortable.

Before she left to get the form, she told me to think about something to talk about for about three minutes. I told her about when I told my Mom that I was pregnant. It was a story that I have told for 20 years and I am comfortable telling it. After we were finished speaking, she turned off her recorder and told me that it may not look like she was evaluating me but she was. She told me that there are six levels of dysarthria. She added that she is seeing two of those levels in me. She had explained to me as I read the list of words, the sentences, and the paragraph that she may have to, “Bank my voice.” She explained about the possibility of needing my voice recorded if my disease progresses to where I cannot speak. Even today, that kind of startles me. I have so much more to say about yesterday but I feel like it’s too much for me to write about just yet…

MY, “MS Brain”

Yesterday, I received a text notification about a doctor appointment that was coming up. I had to completely forgotten about it and I was relieved I was there in time. Well, enter MY “MS Brain”: my appointment is tomorrow and I was so frustrated absolutely because it takes so much work take it out of the house!

I have always been really good about being on time for appointments and stuff but it seems going on 21 years in, that my brain is getting muddled! That kind of bothers me. I didn’t think that things and loss of ability could still bother me but they do… 😒😒😒