This Sucks!

I try my very best not to have days like today; but, in the past 17 years, it happens.  I try to not let it happen very often but…  there will be a day where I realize, “this sucks!”   It’s just an annoying feeling that will not go away! I try to busy myself by doing my dishes or something  but the tears just leak out of my eyes!

I can’t help but think about the extreme cruelty of all of this!   My body is fighting against itself EVERY DAY!!! It’s days like these where I think about what I really have lost in terms of my abilities and  I think about my true limitations. This just sucks!

I received a mug I  ordered a while ago yesterday in the mail and I opened it today:

It came in shirts and sweatshirts but I thought that I would use a mug more often. Here is a better picture of the prayer if you cannot make it out on my mug.:

I  find myself having difficulty remembering what my old self was like.  Regardless,  often I do wish all of this was a bad dream; A REALLY bad dream!  So today is difficult but what I think is tipping the scale and making it TOO much to handle is the extreme pain in my knee!!!

This just sucks!!! GRRR!!!…

Mirium & Tirzah

I was nervous to meet my new neurologist on Tuesday. As my Mom pushed me into the elevator on the first floor, we waited for the elevator to fill up to make my way up to the Neurology clinic on the 11th floor.   My Mom pushed me into the elevator all the way in to the left corner. I was facing the back wall and didn’t really turn my head to look around because my peripheral vision is not good.

As the elevator filled up, a woman with a walker came into the elevator and stood to my right. She looked at me and smiled. She immediately put hands on me and began praising God! I am a spiritual person and I did not mind this at all. As she was speaking over me all I could do was nod and say a quiet, “Amen.”

I will gladly take any prayers offered on my behalf because having MS is definitely NOT easy! The pain in my knee and circumstances surrounding It is not easy either.  I think her prayers over me before my appointment helped me to be more accepting of my situation. It made me so happy that my Mom and I laugh together at my limitations.  As I wrote my blog post on Tuesday, I had a feeling that my acceptance would be fleeting.  It was. It is!

My knee has really hurt today! It’s a constant ache with no immediate hope of getting any better. I suppose  in a way, I am grateful that I have MS because it does not hurt as much as it could because I can’t feel my legs fully.  Today, it hurt enough! I tried to concentrate on other things because I had dishes to wash and I had to make my garlic tea so focusing my attention on other things helped me not to think about the pain. My Mom came by this morning to help me as she does every day with my morning routine and to rub the numbing cream on my knee.

I have often told her that she is Mirium and I am Tirzah.  These references are from  Ben Hur.   A Charlton Heston movie that is a huge part of my childhood, especially around Easter! I didn’t even see it this past Easter which made me sad and I didn’t even get to mass on holy Thursday. I don’t like to go out in public very often if I don’t have to because my knee hurts and I don’t want to be around people who could hit/hurt it.

I only have left my house since my injury for physical therapy or doctor’s appointments.   As Sean’s sole legal guardian, I had to accompany him to the secretary of state to get his license. Other than that, I am home. The last time my Mom came over today was just a little while ago to rub the cream on my knee again. I reminded her that she is Mirium and I am Tirzah and she agreed.  The end of the movie is so wonderful for them and promising for me as Tirzah.

I’ve added some random clips if you have never seen the movie before. I would definitely recommend it!

This is an extremely long and old movie.

In this clip, both Mirium and Tirzah are lepers now.

At the end of the movie, after the crucifixion, they are cleansed.

This clip is better footage of the cleansing.

Aye Papá

I got a flat tire last night after coming home from my doctor  last night. My mom tried to put air in it but the rain started to pick up and I told her Sean would take care of it today.   I woke him up and sent him to Warholak tire to get it checked out.  I’ve told him stories about Warholak.

My Dad sent me there when I was 16 to get his tire fixed. I was a little intimidated by my surroundings being there but  eventually Paul I showed be in to get the car looked at. I don’t remember what was wrong with my Dad’s tire but I told him that my Dad said that he would know what to do. He asked me if I was a, “Rios.” I smiled broadly because that was the first time I had been asked that question.  I nodded and told him who my dad was.

He told me that I was a lot better looking than my Dad and to make sure to tell him that! I remember that I got a pen! The BEST pens in the world!   I called there this morning to see if it was a good day for Sean to bring my car in. They told me it was so I sent Sean.

It’s no secret that I have had a thing for Bradley Cooper for a long time! I finally was able to hook up my Netflix account to my TV at home. I have been watching Burnt nonstop!   I love that movie!

I’ve also been missing my dad a lot these days! With Sean getting his license, it compounded those feelings! I imagine my dad  being proud of Sean getting his license and taking care of my car today. I searched YouTube to find a video clip of the exact moment I thought of when Sean got his license but I couldn’t find it so I recorded it off of my TV.:

CLICK PICTURE TO VIEW MY BOOTLEG VIDEO.

  

The clip is of the restaurant re-launch and Bradley Cooper isn’t even in it but the maître d’ is. I watch this movie over and over and it keeps me company in this bad weather and with the pain in my knee.

4.3.18 Acceptance

I had an appointment with my new neurologist today. My former neurologist, who has been my doctor for 15 years, is retiring. He stopped in to see me as I waited for my new doctor. I wished him well and told him that I will miss his handshakes because he has the warmest handshake I have ever experienced!  He has a warm smile to go along with it too!  He is really tall,  bald,  and has glasses.

My new doctor’s resident came in to evaluate me before she came in as I was speaking to my former neurologist’s nurse. She will be my new neurologist nurse as well.   I have had routine check ups with a neurologist for the past 17 years and I am aware of all the tests they ask me to complete. They test my arm strength, my leg strength, and my vision, among other things.

It pretty much has become routine to do these things and my former neurologist is aware of how I fare with them.  I had never seen this new resident before and he sat at the computer and asked me a bunch of questions for which I immediately knew all of the answers and was not shocked or embarrassed by some of them  or my answers. My Mom was in the exam room with me and told me to slow down because I was rattling all of the facts of my disease too quicklyfor him as he typed.

My mom watched as he was testing my vision and had me follow his finger from side to side. My eyes shake the further to the side I look. He kept asking me if I got double vision which I did not. My arm strength it’s not so bad which I am grateful for and I have not had noticeable  differences in my cognition either and I am grateful for that as well!

I remembered that my brother reminded my son of something my Dad used to teach us about accepting pain and discomfort. My brother told my son to let the pain pass through his body and not to resist it. He told him this when my son was wrestling when he was about eight and hearing him say this, I remembered my Dad saying that  to us as well.

It’s been 17 years and I find myself being more comfortable with the acceptance of this disease. It’s raining and my knee hurts so badly but I have to accept this pain because it’s not going anywhere just like I accept my limitations with this disease. My new doctor came in and she  started doing some of the same tests on me as the resident did.

I was seated in my wheelchair with my leg rests off and my feet on the floor. She told me to not let her pull my feet up and to resist a number of times. She put her hand on my calf and lifted up as if I was not resisting it at all. I looked across the room at my mom and we both started to laugh! I felt better that I finally have reached an acceptance point with everything that is going on!

This acceptance does not make it OK or even easy to handle but there is no use in resisting it. I told her that I thought I would be a success story and that MS would not  limit me. That is NOT the case! I appreciated that she told me, “Not yet!”  Which goes along with the feeling that I have had that a cure is so close, I can taste it!

The way this disease has affected my abilities is horrible and the constant pain in my knee is horrible as well.  I appreciate that at this moment, I feel a wave of acceptance of all this turmoil in this horrible weather.  I am, by no means, saying that tomorrow will not be a tougher day but for right now,  at this moment, it’s easier for me to have this feeling of acceptance of it all.   It probably is fleeting but I had to acknowledge this feeling as my knee and my body hurt so badly. I am trying to let the pain pass through my body.

As For My Knee…

I met with Dr. Moore last Friday  to discuss my most recent MRI. Another surgery is not needed at this point. Please pray for me and offer good vibes so I will be able to endure this pain…  even with the current remedies in place, it is a constant, dull, and gnawing ache that I feel in the back teeth of my lower jaw  I’m not sure how I will be able to live with this pain too. I suppose there is no other choice. Please pray for me!

April 2018 Faves

So, I’m in the time warp right now.  It’s 2007 and I am living in my two bedroom apartment with my son. I would live there for two more years and buy my house in June of 2009.   I’m not sure what caused me to remember this album or even which song I remembered first but  this album was my soundtrack as I filled my crockpot and did my dishes pretty much every day. Here are some songs that I completely forgot about until the music started and I sang all the words! These songs shed light on the fact that my life was so much different in 2007. I was still able to walk with Canadian crutches and the, “Steady feet, don’t fail me now” line really got to me because it was then that I realized my feet were not being so steady and we’re on the verge of failing.

Here are the songs I dig.  Some didn’t get much, if any, radio play:

Poetry Slam

I can’t sleep. Typical.  I have been falling asleep lately to my Dad’s  Play list on Apple Music. I fall sleep to that music often.  Sometimes I cry sometimes I smile to myself. Tonight, as I heard this song:

I didn’t cry as I put his songs on shuffle and remained wide awake in my bed in my dark room.  I’ve been thinking about him a lot lately! Especially today because I would like him to be here for Seanie’s milestone of passing his road test  and would like to hear what he thinks of his glasses.  I miss him!!!

As I heard this song,  Oddly enough, I thought my African-American literature class during undergrad.   Our assignment was to perform a poetry slam to something written by an African-American poet. My professor gave the class a lot of freedom in deciding which poet’s  work we would use.   It had to be an African-American poet and we only had to check in with Dr. Pollard, my professor,  to get approval before we could perform our poetry slam.  I chose this song to recite:

I thought it was strange that I was nervous before it was my turn but this song meant a lot to me! Sean was about 1 1/2  at the time and I really had to fight back tears as I spoke the lyrics to the song in front of the class. I remember one guy was kindof a jerk said something about not liking the sentiment of my performance but I didn’t care because I got through it without crying and got a good grade.  I chose this song for Sean.   I still think the words at the beginning of this song ring true for him and me.   Back then, I placed more importance on getting married but I haven’t yet so I don’t know about the end of the song but for Seanie, this song still makes me cry.

*License*

Sean had his road test this morning. I could not accompany him because 1.  It was raining and 2. I  would not be able to get into the backseat of the car. I wrote a note for my mom to serve as my proxy to accompany him and the evaluator on his road test.  He called me at 11:27 AM and told me that he passed. Of course I had to scream and be excited for him!  When he and my mom got home, he loaded me up into his car and we drove to Secretary of State  to get his license.

He signed in and we were in the line to check all of his documents when the announcement was made that they were having computer problems. We decided to leave and get something to eat. My mom called me a little while later and told me that it was a statewide problem with the computers so I told Sean we would get his license tomorrow.

I told him that we could eat wherever he wanted and he wanted to go to Tubby’s drive thru.   After he placed the order, I’m not even sure what we are talking about but he raised his fist and smiled and said, “License”  and started to laugh. He said just like the dad in Phineas and Ferb. ( A show from his childhood).

I vaguely remembered the reference about some guided tour in a museum but I laughed  and bumped the side of his fist with the side of mine.  I don’t think that he thought I would latch onto that as much as I did but I said that the rest of the day until his eye appointment.

He needs glasses. Not glasses like I have classes which I’ve had since I was a child and is a -6.5 in both eyes.   He does not need to wear them all of the time but  it is a very slight prescription to, “sharpen it up a bit” when looking at the board at school or a computer screen or driving. Here is what he chose:

  

I texted my mom and my brothers this picture and added the words, “It’s Daddy!”  He chose them on his own and when he looked at me with his choice, I am mediately thought of my Dad!

😍

My morning routine for some months now is to wake up and get out of bed while Sean is getting ready for school. Before I put my contacts in, I turn the TV on to Good Morning Football. I could feel myself dragging this morning, not as much as yesterday because it wasn’t raining but dragging nonetheless.

They were talking to coaches and general managers at the annual meeting and Peter was in Florida interviewing them. I sat in my kitchen listening to my TV as I slowly drank my ginger water (I drink this for health reasons as well as my garlic tea). I’m not even sure which general manager they were talking to when he told Peter that Kay Adams is their favorite.   I picked up my phone and tweeted the show:

I finished my ginger tea and rolled over to my refrigerator  to get my protein shake. I drink my breakfast as well. I shook my shake and rolled it into my shirt so I could wheel myself to the living room to watch the show.  I plugged my phone in to charge at the plug by the door and put my phone on the end table.

During the next commercial break, I wheeled over to my phone to check and see if I turned the ringer on after putting it on the “do not disturb” mode at night while I sleep.  I could tell it was going to be a LONG day!!!

But then, I look at my phone, and Kay Adams replied to my tweet!!!:

Even though I could feel myself dragging and was barely awake, I screamed! I love that show so much! I am made to feel special every time they interact with me, whether it is Will Selva or Kyle Brant liking my tweets, Kyle mentioning my tweet on the show,  or Nate Burleson following me back on Twitter.  Kay has liked and replied to my tweets before but, NEVER WITH HEART EYES!!!

I didn’t feel well and my knee hurt  through the night and continue to hurt in the morning so I knew it’s going to be a rough day but that reply made me feel SO special!

Simple Pleasures man 😍!!!

ALMOST Forgotten Tune #17

Do you ever hear the first bars of a song that makes you pause and let out a deep breath  that you didn’t know you were holding and as the lyrics begin, you’re flooded with 1 million memories? Well, that’s this  song for me! I don’t even care that it shows my age but I haven’t heard it in so long and makes me think about how I thought my life would turn out and how differently it is now. It’s a good tune! ☺☺☺

I will have to fact check my blog to see if I’ve already posted this song but it was really cool to hear today.