Category: A Bit Of Randomness

I  have been feeling pretty nostalgic these days! I remain in my home trying to get used to my new chair, (my knee STILL hurts by the way!)

But, I have a memory that for  probably the past12 or 13 years has completely warmed my heart!  My Mom will constantly remind me of it and make me laugh now that she knows the story.  My heart is warmed every time I think about it and I am very grateful to have had the experience!

It was just months after my diagnosis and I was at Farmer Jack’s for some reason. I don’t even remember why I was there! So here I am, walking around the grocery store, newly diagnosed with MS, and pregnant. Not even all of my family knew that I was pregnant yet! I don’t remember which aisle I was in but l I ran into my oldest brother. He knew I was pregnant. We stood in the aisle and talked because as a 19-year-old, unwed, college student, this news was pretty shocking!

As we were talking, pretty solemnly, because my life was REALLY about to change; his friend, Rich, walked up to us. I had known Rich for probably the last five years and he and my brother were pretty good friends.  He walked up to us and as he was almost to us,  when he smiled broadly at me and told me that he heard I was pregnant. When I nodded, he threw his hands into the air and with full, “Jazz hands” shook them and said loudly, “Congratulations!”

He was the ONLY person to say that to me! He is STILL the ONLY person to have said that to me when I was pregnant.   Now, 16 years later, I am very grateful to have had this experience. I looked at him when he did this and told him that he was the ONLY person to say that to me.  My brother and I just kind of chuckled with  the silent rise of your chest and shrug of your shoulders when you hear something like that.

I hold the memory  of this day dearly and very clearly in my heart and mind! I am so grateful that he told me this!

How life works out, Sean is the only child I have had and after a premature birth (8 weeks early) and a 31 day stay in NICU after he was born, I am grateful that SOMEONE was happy that I was pregnant!  I often think about the fact that I don’t know pure joy when finding out that I was pregnant.  There have proved to be many obstacles but Sean and I are alright, I think.

Thanks for letting me have that memory of pure joy with my pregnancy, Rich!  I LOVE that so much!

Last week, I woke up and checked alerts on my phone.   I get alerts from the Late, Late Show because it so funny! I saw this one and laughed out loud because, like Debra Messing, I too was dumb like this!

My situation was a little bit different and I have to clear it up. I was a signer on my Dad’s card when I was a Senior in high school. It was not $600, but I think $250 from a kid who has no means of paying it back is kindof a big deal! My Dad kind of thought so too!   Actually, it was my Mom who was making me pay my Dad back! My Dad did not cut up the card but he took it away and he did present me with the bill and a highlighter. He told me to highlight all of my charges so I could see the money I spent.

Once I saw this clip of Debra Messing on the Late, Late Show, I thought of that conversation and my Dad presenting me with the bill and a highlighter and my Mom kind of freaking out! I was sitting at the  dining room table in my brother Jimmy’s seat and my Dad was sitting in his seat. He was at the head of the table and I was to his right. His good friend, Mr. Kramer, was over and he sat at the table with us in my seat (which is to my dad’s left).

As he and my Dad were talking, I was looking at the bill  sweet as you please and highlighting all of my charges.   I might have been about halfway done reviewing the bill when Mr. Kramer  stopped talking to my Dad and looked at me and told me that, “It  might be easier if you highlight the charges that are NOT yours!” and then he laughed!

I worked two part-time jobs the summer before my freshman year at Western and I paid back all of the money that I charged. It was like $236 or something. I  told my Mom about the video clip and laughed about being so dumb!

I have not put Sean in a position to be that dumb, however. I Will not ever make him a signer on my credit card because I don’t have that kind of money! The kind of money that my Dad had, or so I thought  when I was a kid!

It’s August now and I miss my Dad so much! Coming up on 12 years  and I never thought that 12 years later that in a heartbeat it could seem like it was yesterday!   I tell my Mom that I cannot believe that I was that dumb to think I could get over it!

Reminds me of my Dad:

I can mindlessly play this in the middle of the night when I can’t sleep. I downloaded this app on my phone once Word Connect got more difficult.

There are 2500 levels to the game and I will BEAT the game! Eventually. It takes my brain a while sometimes to figure out the words so it’s those, “sometimes” when I need a break and I play solitaire.    Brain games are good when you have  MS.  The only thing with Solitaire on my phone is that yiu  can’t cheat!

Sean saw me playing it a while back  and he asked me why I was playing it. I told him that it reminds me of my Dad.   My answer made sense to him and he told me that he doesn’t know how to play. That’s insane!

Late last night, my feet felt like they were on fire! I have had that tingling and numbness, static feeling since just before I was diagnosed. That was 17 years ago. There has only been a of couple times in my memory when parts of my body feel like I am on fire though!

Once, during undergrad, before I really knew what was going on after diagnosis, during class, my feet were burning! I went outside in a T-shirt in the middle of the winter to try to make myself feel better. Also, when I got fired, my entire body was enolfed in flames! It was kind of like Gwenyth Paltrow in Iron Man three.   Then, it felt as if lava was surging through my veins.

Last night, the fire and extreme burning feeling was limited to my feet and bottom part of my shins  and calves. It was not comfortable at all! It was torturous!  Once I got in bed, my Mom began rubbing my feet. I still had my compression socks on but the rubbing made my feet feel better! However, my right knee hurt as my Mom rubbed my right foot. It felt like the bones were wobbly, rubbing, and bumping into each other as she rubbed. I told her that it hurt and she should stop.

She suggested that I put ice packs on my feet. Years ago, When I used to see Dr. Clark, (my NRT and chiropractor), his staff would give me a mini massage before I got adjusted. They would put a heating pad on my back to loosen me up before the doctor came in. I was able to purchase those heating pads. I have two of them. One is a square and the other one is for my neck so it’s a thin band.  They are similar to the gel packs they have at ATI to ice my knee. After my surgery, I put those ice packs in the freezer.

I put them both in so I could rotate them while I iced my knee.    My Mom went to grab them from the freezer and I was nervous that I wouldn’t be able to feel the cold. I can no longer feel my bathroom floor being cool  because I am not working out at Barwis. I don’t really have blood flow in my legs.

She brought them over and wrapped each pad around my foot. I could feel the cold! She wrapped her hands around the pad and squeezed. This really did help to put out some of the fire! She had them on my feet until my feet were just a little bit uncomfortably cold. Because I wasn’t in so much pain, I could  fall asleep. I haven’t had that fiery feeling in my feet for a long time! It kind of scares me until it goes away! Not that my feet feel normal by any means but at least they aren’t on fire right now.

So, I had to vote today.   It’s rare for me to get out of the house in this heat especially because I have to transfer to my manual chair to do so. Absentee ballots are not as fun and I would not get a sticker once I voted so I made my way to my local elementary school to cast my vote.

My Mom took me this time and I had a couple of the same woman checking me in from the last time. My precinct does not have a disabled voting booth so my Mom had to help me cast my vote.

As my Mom drove me back to my house, I had to celebrate with an iced chai tea latte and a green goddess salad  from Panera! Sean was cutting the grass so my Mom got out of the car to  give him some instructions and supervise.  I turned the radio on. I remember years ago that a former colleague told me that you know you’re old when you don’t to listen to new music. I settled on the 90s on nine station in the car.

This song was playing:

I don’t think that is what makes you old, I think it’s the fact that I no longer have the pipes to belt that song out with my, “chest voice,” and only can use my. “head voice.”  My cousinT, Shannon, explained the difference to me years ago when I was in high school and I had no problem belting things out then. I didn’t know that would change.

Since I was in the car by myself, I could belt this one out when it came on!:

I think Natalie‘s voice is more in my range then Mya’s.   I was younger when the 10,000 Maniacs song came out but listening to the radio before my Mom came back to get my wheelchair and me out made me realize that I’m pretty old!

I’ve had a thing for Bradley Cooper since Silver Linings Playbook.  I loved him in, Burnt (which I have seen 30 times)!  I cried my eyes out in, American Sniper!  I saw Aloha in a movie theater by myself and even tolerated his crazy hair in, American Hustle. It trips me out that he is the  voice of the raccoon in Guardians of the Galaxy!

I just saw the trailer for, A Star is Born:

At about 1:14 into it, I screamed! I really have a thing for Bradley Cooper!  Those eyes kill me!  I showed my Mom the trailer and she kind of laughed when I screamed. I showed Sean and he said that it looks, “ kind of like an OK movie.”   I told him that he could take  me to see it when it comes out! He kind of laughed.

My Mom asked me how old he was and I asked google and he is 43. I got excited because it’s completely acceptable for me to be with him because he’s 43 and I’m 36. My Mom asked me if he had any kids and I told her that I didn’t know. She also googled that and showed me a picture  and article that stated that he was practically married to his baby mama; and my heart broke! She laughed at my face!

Well, apparently I cannot compete with a Russian model and I have not experienced heartbreak for a long time. But seriously, my heart broke! She asked me why and I told her that it’s obvious now that he’s not waiting for me!

I STILL want to see that movie though! His eyes are killing me! I’m going to watch, Burnt again today I think!  It doesn’t really matter though, Bono is 58 and I still love him! Matthew Stafford is only 30 and married with twin girls and I still scream that I love him at the TV  every weekend during football season! I’m so excited for football season to start again!   Bradley Cooper is my most realistic crush though. He’s more in my age range. His eyes really do kill me!

 

I was an easy laugh even before PBA set in and made me laugh and cry without very much input from me.  My Mom however, does NOT laugh easily!   She is a hard laugh!  I constantly send her Memes and videos attempting to make her laugh. She just kind of smiles a little bit.

However, today she refused assistance to me for my personal care needs until I  doubled her salary!   She waited until I was in a compromising position to tell me this.  I laughed uncontrollably at this request which really wasn’t a request but rather a demand. As I was uncontrollably laughing, she laughed too!  Well, I obviously needed her assistance  at that point so I doubled her salary! After I did that, she decided to help me.

I just want it known that I pay my mother.$0  for assisting me.. So double that is $0!   I really like laughing WITH my Mom!!!

I’m slowly figuring out which position is most comfortable for me In my new chair. What works out for me is that my feet are like this, my knee hurts a little less.

From the second I wake up and get into my chair, I  adjust my feet to look like this.

The above pictures I took in the morning when I got into my chair. Over time, because I have NOT been to Barwis and have not had Adam, Nick, or Michael stretch my ankles, my feet end up looking like this:

My feet to get inverted and I have a supinated foot over time.

I am 100% certain that this is happening because I have NOT been to Barwis Methods in just about two years. I never understood why Nick or Michael did this but now I do! It was to  combat my feet doing this.

It makes me sad that both my feet do this, my right or “poop foot” does it just a bit more!

I never thought I would be grateful to have a motorized chair but I am! I can adjust the height of my feet to accommodate my leg spasms and knee pain. I still experience knee pain by the way! I don’t sleep for the night in my chair so when I am in my bed, my knee hurts, it popped out a few nights ago and hurt extraordinarily the next day!

It frustrates me so much that my feet are doing this and I am saddened by all the strength I have lost not being at Barwis.   Alas, my knee still hurts so I can’t imagine anyone manipulating  my right leg to help with my strength,

My knee popped out last night as I was getting ready for bed.   It was a stunning realization to recognize that the pain of my injury still lingers, very close to two years later!  It was a huge bummer for me because it came just after a bunch of my friends and former colleagues came over to see me and to hang out. I had such a great night to end with my Mon (who came by just after they left and  to help me get into bed) having to manipulate my ankle until my knee popped back into place. It hurts so badly!

Once I was in bed, I laid on my back as my left knee throbbed . I wondered how I was going to get to sleep. I rolled over to my left so that I was on my stomach as my knee still throbbed.   As much as  I miss Barwis so much that it hurts and I feel that many of my  physical gains that I got there are leaving me, as I laid there on my stomach, I realized that I still had  this thing! Michael used to challenge me to lay on my stomach for 10 minutes before I fell asleep.

I used to be a stomach sleeper before I got pregnant. Being pregnant, you can’t sleep on your stomach so I became a back sleeper. As Sean got older, I still slept on my back because I was losing control over the muscles in my body so I laid flat on my back and would not move throughout the night, if my arms were crossed over my chest, I would have been a vampire!

With all the stretching that Jesse, Adam, Nick,  Mike, and Michael did, my muscles were loosening up and all the strengthening they helped me with, I was able to control my muscles a little bit more.   Because I sit in a chair all day, Michael would tell me to stretch out my adductors (or was it aBductors?)  Adam used to tell me the difference all the time but I can’t quite remember it now.

But being seated in wheelchair these muscles are constricted because I’m sitting so laying on my stomach would stretch them out. It was really painful  at first and took a lot of time to build up to me being comfortable laying on my stomach again. Well, I still am in a chair all day but I can lay on my stomach throughout the night.  In fact, now, I sleep on my stomach for most,  if not all, of the night.

As I was trying to drift off to sleep with my eyes closed and my knee still throbbing, I thought about all my trainers at Barwis and Michael challenging me to lay on my stomach and how long it took for me to get comfortable  to sleep on my stomach for the whole night again.   I was a bit sad knowing that a lot of it is lost but not all of it. I really can’t wait to get back to Barwis but I also can’t imagine my knee NOT hurting; so until then, I will have the fondest memories of working with all of my trainers at Barwis!

Having had MS for  almost 18 years, There are MANY things that I miss!   I don’t want to talk about the obvious things like walking and driving but rather, focus on things that people don’t realize I can no longer do.

I miss writing.

Sean started school yesterday and I had to sign the syllabi from each teacher for his classes.   My signature does NOT look like it used to!

I am saved by ‘dictation to text’ capabilities in my phone so I can still “write” blog posts.   But, it’s the physical act of writing that I can no longer do. I cannot hold a pen.

My Mother or my son will sign for me when I use my credit or debit card in public.   They write the checks out for me and I just sign my name by repeating my name  to myself a number of times before I begin writing it.

I didn’t have a problem taking notes in college or even writing when I taught. I think it’s sad that if I hadn’t injured my knee, I would still be writing more easily than I did last night to sign my name seven times. It didn’t look very good at all but anyone can tell my signature by the unique way I write my, “J’s”

I used to love my writing! In high school, I started writing, “Obscenely large” (that’s how I explained it people).  Retrospectively, it’s probably because I was losing control of my fine motor skills  even back then. I wrote even bigger when I graded papers!

My Mom will forget that I can’t control my hands well by telling me to write myself notes. Yeah, not so much! She tells me that my hands look functional but alas, I have learned that looks can be deceiving when your body has MS and nobody can tell!