Author: Jen Rios

Yesterday, I was telling my Mom about making my appointments for January and for February. I have to go to the hospital in January for my bone density scan, but my Mom asked why I can’t see the endocrinologist virtually?

When she asked me that, I thought, DUH?! I realized that I was homebound in December 2023. Why am I going to leave the house in February if I don’t have to?! I guess after 24 years, I still think I’m LESS disabled than I am!

After I drank my nutrition shake, I called endocrinology and spoke to Chantelle. I told her that I had made an appointment the day before and I want to change it to virtual if that’s possible because I’m homebound and it will be cold in February! She made that change in ‘two shakes’ ! I was pleasantly surprised!

I felt kind of like Flora today and made it pink!!!

I found these clips today on YouTube. I remember seeing this movie so many times when I was a kid!!!

https://youtu.be/9B1wRt7fmCk?feature=shared

Check it. After I drank my morning shake, I called radiology for my bone density scan. I needed to make that appointment for January. The exact date that I was looking for was available and I took the last appointment of the day. That’s what I do now.

I next called endocrinology and the woman I spoke with said that I already had an appointment so I just decided to keep that one. Endocrinology called my mom and we made an appointment together last week, but then the woman told us that we need to make a bone density scan appointment first. She told us that she canceled the appointment. Lucky for me that she did not!

Because I was looking for appointments four and five months from now, I was able to get exactly what I needed! My 2026 schedule is taking shape and I have January and February semi secured. I will find out in November when I get my teeth cleaned when my next March appointment will be. In October, when I see my interest, I will know my May 2026 appointment.

I never thought this would be my ENTIRE life, but it is. I find solace in the fact that it makes sense to me. I can do this. I actually was thinking about texting my Speech Pathologist because I made those two appointments with such ease and I recently listened to audio recording that I made for myself and for her just after the Rams won the Super Bowl my speech was so rough back then!!! It was almost painful to hear!!!

I think that I need to ’splain ya some things. This weather transition is really difficult for me in addition to dealing with this disease progression that I was not ready for at all! But it’s happening!

I speak in a monotone voice now which I really don’t like. Yesterday, when I left the house, I looked at myself in a little mirror I have by my chapstick boxes. I haven’t looked at myself in months.

Couple things: I can’t believe my hair is this short!!! It’s necessary though. Also, I could not smile even when I was trying to force myself to do it. I think this has just hurt for too long.

I was not ready for this disease progression but it was happening all along. I just can’t believe I got here! It feels so fast! So, I’m having a hard time and I told my Mom yesterday, in a moment of despair, “There are parts of me that are dead.”

She was quite upset about this statement, and I just said, in a monotone voice, “I will never sing again.”

That statement upset ME! I remember that I wrote about the fact that I no longer can sing because I don’t have the strength to get the air into my lungs anymore. You should hear me blow my nose because that’s difficult too!

I have watched that The Voice video twice and bawled my eyes out both times! I think I will watch it a third time before I go to sleep tonight. It’s kind of cathartic crying I think. I think I cried watching that because to see the singers sing with the ease and it sounded so wonderful and the fact that I won’t do that anymore was a little bit sad for me.

I had my appointment with my naturopath today. I went in wanting to talk to him about three things and not in this order:

• I have gastritis.

•I want something to work on my eyes because both my neural ophthalmologist and my optometrist say that my eyes are stable.

•My bones. They ache.

I told him how I got Derma Trophin from the natural food store and I have taken two pills a day for a total of 150 pills. I also told him that I took the Prilosec they offered me and said I would be fine in two months, but he checked my body and he wants me to have six pills a day for two weeks and then three pills a day until I see him again. I’m not seeing him again until December because I have four appointments in October and three appointments in November.

I was able to get two of the supplements that I needed in addition to more of the Derma Trophin.

He checked my body and that’s all that I needed right now. He told me twice with a smile that, “You’re beating the system!” I smiled back behind my mask and I guess that I am with his help!!! I have been seeing him since 2011. I’m not sure why I feel so ‘meh’ today after the appointment but I do.

So, check this out: I called endocrinology because I knew that I was ready for another bone density scan, but my MyChart is so congested with all my appointments that I couldn’t see my last endocrinology appointment, which was in 2024.

This is all a thing because my bones have started hurting. That’s a little bit concerning. Actually, it’s A LOT concerning!!! I think that ‘aching’ is a better term. Neither one are good, but I’m seeing Dr. Clark tomorrow to talk about it,

I think that I called them on Friday and the woman I spoke to told me that they would call me back in the next one to two business days. I always leave my Mom’s phone number now because I cannot speak to a stranger. My brain gets jumbled up!

Well, they called my Mom today just as I was finishing ordering a disabled remote control because I cannot see it at all anymore. Unfortunately!!! I already got an email that it was shipped and it will be here on Wednesday. That kind of makes me sad I think. But it’s necessary now.

So, I’m hanging up with Xfinity just as my Mom finished with endocrinology and I told her that they will be calling her in 10 minutes to update my Xfinity account. John flagged my account and he saw that my Mom is also on my account because she talks for me sometimes.

I really cannot believe all of these transactions took place in a matter of minutes today. My Mom told me to, “Know that it was all [my] business?!” I told her that, “I know and my head is spinning!!! It really is! But I am talking about appointments that need to be made for February.

I need to make a bone density scan appointment BEFORE I make an endocrinology appointment. I have to see them but the woman I saw two years ago is no longer with Henry Ford.

I will make those phone calls on Wednesday or Thursday. This is all so much!!!