Month: September 2018

After my last appointment with Dr. Moore, I now use a tens unit every day. This is NOT an easy thing for me to have on my knee but it seems to be the only thing that gives me a little reprieve from the pain I’ve been feeling in my knee for over two years now.

After the first day of using it, my Mom and I realized that I couldn’t have it on my knee without my compression sack on.  Because my leg will get really swollen.  So, we hook it up to my leg and then pull my compression sock over them.

This procedure adds 45 minutes to an hour for me to get ready in the morning. My Mom will pull my compression sock down put the electrodes on my knee. (Three in the front and one in the back of my knee) She then pulls my compression sock up over the pads and turns the system on because at this point, my leg has begun to swell because my compression sock is tight around my calf. With the stim. on, it eases the pain a little bit because I still have to put my pants on! 

I really hate to put this picture in because I have ugly knees  but it shows what I have to put on my knee every day and the fact that my knee is already beginning to swell by not having my compression sock on and pulled up. You can see my scar from ACL reconstruction and if you look really closely, you can see the scars from my meniscus repair on either side of that scar and the Tenex procedure I had done Scar is on the lower right just above the compression sock. It is still kind of red because I had that procedure in February.

So this is what my Mom and I do every day. Well, mostly my Mom!

I couldn’t figure out why I started getting headaches and I’ve had a headache every day since I started doing the tens unit. I have since learned that one “con” of using a tens unit is that you can experience headaches. If you are prone to migraines, it will be a migraine.   I don’t get migraines; my Mom and my brother do but it is because of the electric stimulation being surged into my body that causes the headache.

The tens unit has been the only thing that  has taken the pain away so I keep it  running on my knee until I begin to feel a headache at which time I turn it off and take some Tylenol. I don’t wear the tens unit when I go to bed.

Well, last night as I laid in my bed on my back watching YouTube videos, my right knee popped out. I gasped and rolled over onto my stomach until my knee popped back in. I think it’s crazy that this is still happening a year and a half after surgery  and more than two years after my injury!  Naturally, my knee hurt even more this morning so I kept the tens unit on until just a little while ago for which I had to turn it off because I was getting a headache… AGAIN.

Well, my knee felt really good with this stim on yesterday but what I was afraid of happened! As I had it on my leg for a while, I asked Sean to peel back the top of my sock to see if my leg was swollen. It was! He told me that,  “Your leg looks like a baseball bat!”   I called my Mom and she came over to fix it.

She had a REALLY hard time putting my sock back on my leg. Putting compression socks on isn’t an easy task but my Mom handles it quite nicely. However, because my leg was so swollen, it was very difficult to put the sock back on. I was nervous how my leg would feel throughout the night.

Well, my leg did not hurt while I slept but shortly after I awoke, when I was drinking my teas,  my knee began to hurt again. This time, my Mom put the pads on upside down so the cord was facing upward, she put my compression sock on my right leg  over the pads and she fed the wire up through my pants and out at my waist. Once I was situated in my motorized chair,  I was able to turn it on.

It feels nice but still leads me to have many questions.  What I was afraid of yesterday happened last night, my leg swelled up. I’m hoping with my Mom and me brainstorming, we will have fixed that problem but I guess time will tell.

When I used to work, I used to wash my hair every day. Now that my disease has progressed as far as it has, it is very difficult and   Uses up a lot of my energy to wash my hair every day. I now wash my hair every other day. It really doesn’t matter because I am pretty much homebound anyway but that is how it is. Sometimes, washing my hair takes way too much energy, more than I have, so I would just have dirty hair if I am not going to see anybody.

Sean and my Mom have witnessed me  like this. Today,  I washed my hair. It was kind of cold after my hair was washed  and still wet so my Mom suggested that I blow dry it. While working, I would wash my hair every day and blow dry it nicely so it had a finished look to it.  This past spring and summer, it was too warm to blow dry my hair so I just let it air dry. It’s actually better for my hair to let it air dry sometimes.

Because I was cold, today was the first day I have blowdryed my hair since last April I think. It felt strange as I ran my fingers through my hair as I was drying it. Yeah, I no longer use my round brush to style it because I’m not going anywhere.

I told my Mom that my hair felt funny on my fingers as if there was a film on it and maybe all the shampoo was not rinsed out. She told me to watch it again tomorrow because I have an appointment with Dr. Moore. I can’t remember the exact context of what she said but she told me that I have, “Greaseball hair!”

I threw my head back and laughed hysterically! Maybe that is why I used to wash my hair every day? Now that physical exertion takes it’s toll out on me  so much, I just let my hair sit another day. Tomorrow, I will be out in public so I guess it won’t hurt to wash the again. I just have to gear up to get it washed tomorrow too.

I continued laughing so much so then my Mom started to laugh as well.  I absolutely love it when we can laugh! It makes me think of the quote about having 1 million things to cry about but choosing to laugh. That’s me because having MS and my knee hurting so much it is very difficult but I love to laugh any chance I get, especially with my Mom!   I don’t even care if it’s at my expense with my, “Greaseball hair.”   We laughed most of the morning and afternoon today!

I was quiet yesterday and I fell asleep many times in my wheelchair yesterday. I thought I would a pivotal post that would give me hope for the future but, I woke up in the middle of last night with my knee hurting. It felt strange and I couldn’t figure it out.   That is, until I rolled over  onto my stomach and I felt and heard a crack of it popping back into place amidst the dark and silence.

Needless to say, when I awoke for the day, my knee was hurting quite badly…STILL!   When my knee was first injured, I used to say things that would start off with the words, “When  my knee is better…”  and I’d finish the phrase with things like, “I’ll  go back to Barwis.”  (that phrase being the most important!)

But the thing is, it’s been over two years since that day of my knee being injured and I can’t see it getting any better. It just s so much! It kind of makes me feel helpless because my day starts and ends with excruciating pain in my right knee. It’s gone on for two years!

I wanted to write something yesterday but, I just couldn’t. With my knee popping out in the early hours of this morning while my bedroom was still dark the pain continues today.   That phrase, “When  my knee is better…” seems like it will never happen. I see Dr. Moore again on Tuesday.

I’ve talked with people who have told me that meniscus repair surgery should make it all better. Then I add, “But, sprinkle in a little MS…”  they respond with, “Oh!”

 After two weeks, my speech has finally returned. I cannot say how terrified I was to not be able to speak that time. I could form the thoughts in my head but I could not get them to come out of my mouth audibly.  Because I am alone for a large part of the day, it felt as if my tongue was swelling inside my mouth for many of those days. I am so beyond grateful to be able to speak again.

 For those two weeks, I  often word think about  and wonder if this was how it was going to be with my speech. I thought of the book and movie, The Fault in the Stars where Hazel talks about Gus’s “Last good day.”  He did not know it would be the last good day before he died. I am not dying immediately but I can’t remember my, “Lst good day” of walking without crutches, not being a wheelchair, driving, and the list goes on and on.

It was sobering to think about my speech not being normal again. It was scary. I  could not remember the last thing I talked about. My speech is slurred sometimes, but I can get my thoughts out  almost as  quickly as I think then. My thoughts get mixed up sometimes but I’ve figured out that if I remain silent for a moment and shake my head, at this point,  they come back.

I don’t know when my, “Last good day”  will be and that’s a little bit scary. But for now, I continue living with my, “slightly modified” way of doing things;  but they STILL get done. Oh yeah, and…  with my speech still slightly slurred, my knee popped out again and the next day it over-extended backward upon transferring. It was a completely new pain that I have not felt in the past two years that I have been feeling pain.  I made another appointment with Dr. Moore coming up to see what’s going on.  Needless to say, that was another, “Bad Day”  like before.  It had a soundtrack as well.

I saw this commercial twice when I was watching football yesterday:

I wasn’t really watching the TV when it came on but both times when the woman said, “Play ‘She’s a Rainbow,’”  I thought of one of my favorite songs and NOT the Rolling Stones!:

This song came out during my first years of teaching when I still attended comedy shows and bars and the line about a beauty going out with idiots seemed fitting to me. Now, because that all seems like a lifetime ago, the line that I really like now is that, “it’s not a hill it’s a mountain when you start to climb.”

I am on a 17 year, “climb” with MS  with no end in sight and right now, it doesn’t seem like a hill, it’s more of a mountain and the summit is not visible at all!

But I dig anything that reminds me of my ultimate, favorite band, u2!