Top-Secret
Clearance! That's right, folks... yooou have been granted top-secret clearance
to A Day in the Life of Rebecca. I have to tell you something... I honestly did
not want to write this. This is something that I try not to show people at all
(I don't want pity & I don't like to share the negative). Only my family
sees it. But, I'm feeling the need to be really transparent here. You can't
really understand what's going on, if I don't tell you, right?
This is really hard for me. You know me... I don't like to dwell on the negative or the difficult stuff. It's just the way God made me... but it's also a form of self-preservation. If I dwelt on the negative, it would beat me down, and I would be a very sad and despondent person. Who wants to live their life like that? Not me anyway! To me... MS is just a thing. It might make things stinky or more difficult, but whatever.
So, today...
Six days a week, I usually do The MS Gym with my buddy group via video conferencing, at 10:30, 12:30 & 2:30. I've learned that movement is medicine, so while there are some days it doesn't completely work out, I'm committed to this. In fact, I'm sure I would be bed-ridden right now, if it weren't for The MS Gym!
I was struggling. Spasticity was crazy. So, I decided to try something, specifically for spasticity in the toes, ankles & legs. I was very thankful our daughter was home, because I needed her to come help me get up twice, because my body was just not doing what I needed it to. At the 10:30 session with my buddy group, I'm sitting in my scooter, because it's more stable than my Wheelie Walker. I couldn't even pull my foot up onto my opposite leg to try & rub it out. Argh. Need Elodie's help a couple more times. The struggle is real today.
Around 11:15, I realize that I forgot to take my meds earlier, which also helps with spasticity. Thank goodness. It's not actually more progression. This is also good news, because I wasn't sure how I was going to take our daughter to her orthodontist appointment. That's why she's home today. I couldn't rely on being able to pick her up from school for the appointment, so we adapt. Anyhow, big day! She was getting her braces on, hubby had a meeting, so I had to be there.
Thankfully, our daughter knows how to load the scooter onto the lift & tighten it down. All I had to do was get into the driver's seat of our SUV. After 10 minutes (maybe it was 6 - it felt like forever), my daughter's help, some tears of frustration (me), & my daughter cheering me on saying, "You can do it Mommy! I believe in you!", I finally made it into the driver's seat. Thank goodness, lifting my leg two feet in the air uses different muscles than driving & I was then fine.
After we got back, a dear friend dropped by unexpectedly. I love when she does that! 😀 MS can affect your breathing & vocal chords. It does for me. I guess the day had been more stressful than I even realized, because I was very hoarse. This is new. As the stress went away, so did the hoarseness. Just the normal slur now. Talked about how I wish our kids didn't have to do so much for me. More tears. My ongoing prayer is that the Lord uses this for their good. My friend offered to help with a couple of fundraising things. That took a huge load off! She also prayed with me! What a blessing!
Hubby will probably help me into bed tonight... maybe even turn on the electric toothbrush, because sometimes that's just super hard.
Okay. That's it. I will probably never say anything about this stuff again. It's just life. It happens. It is what it is. But, you can see a little more of why I am trying to get this treatment. HSCT is it. There are no other options.
If you feel led to help make this happen (ThAnK-yOu!!):
▪︎ https://givetaxfree.org/campaigns/rebeccas-hsct-adventure/
▪︎ https://www.gofundme.com/f/rebecca039s-hsct-adv
This is really hard for me. You know me... I don't like to dwell on the negative or the difficult stuff. It's just the way God made me... but it's also a form of self-preservation. If I dwelt on the negative, it would beat me down, and I would be a very sad and despondent person. Who wants to live their life like that? Not me anyway! To me... MS is just a thing. It might make things stinky or more difficult, but whatever.
So, today...
Six days a week, I usually do The MS Gym with my buddy group via video conferencing, at 10:30, 12:30 & 2:30. I've learned that movement is medicine, so while there are some days it doesn't completely work out, I'm committed to this. In fact, I'm sure I would be bed-ridden right now, if it weren't for The MS Gym!
I was struggling. Spasticity was crazy. So, I decided to try something, specifically for spasticity in the toes, ankles & legs. I was very thankful our daughter was home, because I needed her to come help me get up twice, because my body was just not doing what I needed it to. At the 10:30 session with my buddy group, I'm sitting in my scooter, because it's more stable than my Wheelie Walker. I couldn't even pull my foot up onto my opposite leg to try & rub it out. Argh. Need Elodie's help a couple more times. The struggle is real today.
Around 11:15, I realize that I forgot to take my meds earlier, which also helps with spasticity. Thank goodness. It's not actually more progression. This is also good news, because I wasn't sure how I was going to take our daughter to her orthodontist appointment. That's why she's home today. I couldn't rely on being able to pick her up from school for the appointment, so we adapt. Anyhow, big day! She was getting her braces on, hubby had a meeting, so I had to be there.
Thankfully, our daughter knows how to load the scooter onto the lift & tighten it down. All I had to do was get into the driver's seat of our SUV. After 10 minutes (maybe it was 6 - it felt like forever), my daughter's help, some tears of frustration (me), & my daughter cheering me on saying, "You can do it Mommy! I believe in you!", I finally made it into the driver's seat. Thank goodness, lifting my leg two feet in the air uses different muscles than driving & I was then fine.
After we got back, a dear friend dropped by unexpectedly. I love when she does that! 😀 MS can affect your breathing & vocal chords. It does for me. I guess the day had been more stressful than I even realized, because I was very hoarse. This is new. As the stress went away, so did the hoarseness. Just the normal slur now. Talked about how I wish our kids didn't have to do so much for me. More tears. My ongoing prayer is that the Lord uses this for their good. My friend offered to help with a couple of fundraising things. That took a huge load off! She also prayed with me! What a blessing!
Hubby will probably help me into bed tonight... maybe even turn on the electric toothbrush, because sometimes that's just super hard.
Okay. That's it. I will probably never say anything about this stuff again. It's just life. It happens. It is what it is. But, you can see a little more of why I am trying to get this treatment. HSCT is it. There are no other options.
If you feel led to help make this happen (ThAnK-yOu!!):
▪︎ https://givetaxfree.org/campaigns/rebeccas-hsct-adventure/
▪︎ https://www.gofundme.com/f/rebecca039s-hsct-adv
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