My supplements are set to be picked up tomorrow. Check.
My alarms are set for tomorrow morning. Check.
My hair is washed. Check.
Why is my heart racing so much?!
Well it is. I’m not sure why still though. I embarked on these routines starting in 2021. I did not realize that I was homebound until I read about it in December 2023.
Everything is getting harder now.
Haircuts tomorrow and I’m getting my teeth cleaned for the third time this year on Tuesday. Maybe because it’s so cold outside…
My Mom called Zerbo’s today to make sure that they have all of my supplements to pick up on the 19th. They had everything. My Mom will pick them up on the 19th when we get our haircut.
We have fallen into this routine, organically, really, I think:
Probably about five or six months ago, my Mom spoke with the owner of Zerbo’s. Her name is Clara and she remembered me coming in there with Sean. She asked about me and how I am doing. My Mom told her that I see my naturopath in Flat Rock now and she told her the state of my MS. I am homebound now. They discussed that I could special order my supplements from Zerbo’s every month.
So this is what we do now:
On the first Monday of the month, my Mom will call Zerbo’s and either talk to Clara or leave her a message for which supplements I need. I then tell my Mom again just before coming in to get the supplements. Just to make sure they are there. My supplements are all there now and there’s something satisfying about that.
So, it seems that I am part of Clara‘s ‘special shelf’ (a shelf reserved for special orders) and I have been there for three months. So it seems that three’s a charm!
The weather is cold, and that is terrible but you have to take wins where you can get them, I suppose. I’m happy that my supplement schedule makes more sense to me now and the fact that I can just order them directly from the store. Such a relief!
Because now, I understand how important it is for me to have my supplements as my diseases progresses. My Mom has been telling me that for a while but now I have no choice but to listen. I feel terrible without them! I tell her that, “I can’t afford them.” But my Mom counters with, “You can’t afford NOT to have them.”
I needed to make my June appointment today. My Mom did it. She made my appointment for May as well. I think that my disease has progressed to me NOT being able to do that anymore.
At least right now.
But let me ’splain ya, this appointment:
The appointment that I needed to make was for a CT scan of my bladder. I cannot go to Fairlane where I went for my ultrasound. I have to go downtown. But this particular scan is only done in the morning. My appointment is downtown at 8 am.
It looks like, my Mom and I are pulling an all nighter. At 43! I will be 43 at the time of this appointment. I’m 42 right now. We are taking Sean with us just in case.
Seems these appointments are quite involved now. I can make my optometrist appointment for July and my neurologist appointment for August. My neurology appointment will be virtually.
My dance card is almost full for this year and it’s only February. In April, I have a dermatology appointment at 10:30 a.m. I said that appointment was going to be difficult but I think this one will take the cake! I think it was 12 when I pulled my first all nighter, looks like 31 years later I’m going to be doing the same thing?!!!!!
This happened today:
This is a little bit strange!
Let me ‘splain ya:
I had to start using this chapstick on January 20. Because I already used my ENTIRE Mint Cocoa tube! (and now it’s discontinued, so I’m not sure what I’m going to do) And here it is February 10 and I used the ENTIRE tube again! I’m surprised at how fast I am using the tube and I will order more chapstick when I get paid. “Go time” is next week.
A haircut and a teeth cleaning this month. This is the first time that I will have three teeth cleanings in one year. That feels weird! But teeth are important to me! And this disease is progressing… I am aware of my calculus in my bladder! That stinks! I hope to get an appointment in June to get it zapped.
This is the first time that I have not have the entire tube out. A ‘rice cake’ size piece of chapstick broke off right when I started using it. I am saying ‘rice cake,’ because that’s what it reminded me of! I wasn’t sure how that broke off, but it was weird when I tried to use the tube for a while after that. It had to get smooth again, and that took some time!
And then, the chapstick fell out of the tube. I had to just push it back in and I’m not sure how that’s going to go when I finish the tube. We will just have to wait and see. I’m sure it will be weird.
I figured out in December 2023 that I am technically homebound. I knew it before then but that’s just MS progressing. I am still trying to wrap my head around it!
But I think things have started to get serious now…
You know, when doctors want to call you on Sundays. I messaged her letting her know that she should call my Mom because I will be sleeping. I gave her the best times to call.
I am trying to treat this like when the doctor told me that Sean may have had ‘brain bleeds,’ or just a normal variant on his MRI in NICU. He told me that the Wednesday before Thanksgiving, and I had to freak out until the following Monday!
Everything was normal for Sean and I’m hoping that it’s the same for me. I told my Mom that if I need anything medical for this year, to let my doctor know that I have June, August, and December available; otherwise it will have to be next year.
I have doctors appointments all of the other months for this year so far. I’m trying not to freak out! This doctor told me that I have had MS for so long that is just pushing me into perimenopause. I have known for many years that after having MS for so long, it would start affecting my other organs and stuff…
Yesterday was difficult. Every day seems to be difficult now! I had a realization yesterday at how small my life is now and there is nothing that I can do about it. I don’t think that I liked it very much… #MSsucks!!! 😒😒😒…
When I woke up this morning, my Mom told me that I had curly hair and she snapped a picture:
I have wanted curly hair for my entire life! I have it now at 42, fat lotta good that does me! The woman who cuts my hair asked me last March I think who I got the curly hair from. My hair started to curl then. My Dad had curly hair and my oldest brother and my youngest brother. My second oldest brother has wavy hair, but my brother Jimmy and me just had straight hair.
I looked at my hair and I thought of “Lambert the sheepish Lion” It was a short that we used to watch on the Disney Channel when we were kids. I think I may have to look at Disney+ to see if it’s there.
Aafter I got into my living room, I pulled the comb through my hair and made my hair a puffball just in time to put my hat on. I’m totally not used to having curly hair!
Having had MS for 24 years means that I am used to routine at this point and I am used to brands changing. Every time a brand changes of something that I use on a daily basis, that’s really hard for me to get used to! I have had to get used to so many changes regarding brands of things I use every day!
But this next one, kind of hurts! Let me ‘splain ya:
I remember that Sean and I were getting our teeth cleaned just after my 30th birthday. My cleaning was just about finished and my hygienist was my flossing my teeth. I was so surprised at how much my gums were bleeding! I asked my hygienist about it, and she asked me how old I was. I told her that I had just turned 30 and she nodded with a smile. She told me I would have to floss my teeth twice a day for the rest of my life!
Judy had been my hygienist many years at that point, and she was Sean’s for a while as well. She has since retired. Sean would call her his ‘tooth fairy.’ Somehow I remember leaving the dentist and going to Target to buy floss picks. That sounds familiar!
I have been using them for the last 12 years! I actually buy four packs of 75 in December for the following year, so that I can change them out each time I change my toothbrush head (Jan, Apr, Jul, Oct – same as my water bill) I buy the refill bags to fill them up between bag changes. I got my order in December. Well, it looks like it was a time for a brand change:
it says in the upper left-hand corner that is new clean-tech floss. That’s code-word for plastic and it feels disgusting between my teeth! I wasn’t sure what I was going to do but I did have some otherwise floss picks in the bags of 150 so I’m using that now.
This is what they used to look like:
Now, enter my Mom, Mary Rios to problems solve! While I was sleeping, she went to, not one, not two, but three different stores to buy up all the close out merchandise of the old floss pics that I use:
She showed this bag to me just after I drank my shake, wow! I think I have a year supply of floss picks! She even commissioned the other members of ‘the three little ones’ in my family to see if they can find some as well!
I am not sure what kind of floss picks I will use once all of the ones I have are gone, but my Mom is going to call there to complain on my behalf tomorrow! Maybe they will change it back?
I just realized how actually small my life is now. Tiny really. I do the same thing every day. My Mom asked me when we are leaving the house again and I told her February 19. Really? This realization of this fact is making my head spin…
I experienced a new sensation last night, and I thought of, and heard this song in my head as it was going on, this song reminds me of my brother, Steve. I was five when this song came out:
But this new sensation started in the late evening. I actually told my Mom that it feels like the ending scene of Willow!:
The new sensation feels like when Bavmorda has the wand and lightning strikes it!
It did not feel good at all! It hurt more on my left cheek than my right cheek But it was acute, but it kind of lasted for a while. I breathed, and I prayed, and I think I drifted off probably at 5:56 this morning…
I don’t know how often that is going to happen but I have had this neurologic disorder for 24 years now so…