Author: Jen Rios

I never would have thought that my life would be how it is now 24 years into this disease. But as the rain is coming down on my roof, how could I not?!

My life is so small now and I watch the same movies. I’m already gearing up for my April appointments!

It is the third appointment of the month that is going to be a doozy!!! I’m already thinking about what time I will have to wake up because my appointment is at 10:45 a.m. downtown!

So, I just realized that I have a doctor appointment next week?!

ALREADY?!!!!

I’m not even recovered from last week as of yet?!

I am not looking forward to my April appointments and they start next week! I have one next, two the following week, and one the week after that!

My Mom asked me again today about changing the appointments, and I told her that I can’t because these have to be done as soon as possible!

April 9 is urology and hopefully, she can address my calculus, because I am becoming increasingly aware of it as of late. I already have a CT scan scheduled for June and this other doctor, I saw last week, added to the scans. I will see my internist before I have the CT scan and I will let her know about the request for more scans.

This all seems so big to me right now! Tears come so easily now! I wasn’t prepared for that either!

My Mom commented a while back about why I am getting so many scans and I let her know that I am not healthy. It’s necessary that I get these scans.

And it’s a little scary to be honest and I wasn’t prepared for that either!!!

My Mom asked me why I made so many appointments in April and she asked me why I did not spread them out. Well, here’s the thing:

I did not plan anything!!! Actually, I was just planning on going to see my dermatologist and get a haircut. But, my January appointment showed a calculus in my bladder so therefore I am going to see a urologist on April 9. That was an appointment I had not planned for!

And then, at my internist appointment, I discovered that I have a lost 23 pounds in the past six months. That made me make an appointment for April 22 so now I have a total of four in April. The specialist I saw the following Tuesday added to the CT scan that I already have scheduled for June because of my weight loss.

I think that I am having a hard time with it! I’m quiet. I told my Mom that, “I’m sorry, I just can’t see past my April appointments.” This is starting to feel a bit overwhelming! I thought of this movie clip, but it’s not what I remembered seeing so long ago:

But I’m kind of feel like Kate Hudson at the end of the scene right now…

I remember when I was in high school, my friend and I had to hold hands for something we were on a field trip or something? I held her hand and I said, “Your hands are so small!” to which she laughed and said that she was thinking the same thing about mine! we put our hands together and found out that our hands are exactly the same size!!! We laughed about that together!!!

I have known forever that I have hands like my grandma. My Dad‘s mom. His sisters (my aunts) have small hands as well. I have, “Grandma hands.”

This is the phone that my Mom brought back:

I must tell you that having ‘Grandma hands,’ means that my hands are too small to take pictures with one hand. I learned that as I was trying to take pictures of my chapstick because it’s in a bag right now.

This is the picture I settled for:

I couldn’t get a good picture of the label, but I’m almost finished this now. Because I feel the uncomfortableness of the change of seasons, I think that I will switch over to Pomegranate when I am done with this tube even though I am not leaving my house until April 9. it’s sooner than last month, but I’ll talk about that in a bit.

Thinking about it now, I think I need a phone this size. It’s Best. It sucks that so many abilities at leaving me now!!! My head is seriously spinning right now because this month coming up, I will have four van rentals for three doctor appointments and I need a haircut.

So, I got a new phone on March 20. My Mom brought it home and was telling me about my new passwords to login and stuff, but then she told me there was no screen protector on it because they ran out of them.

When she told me that, I put my phone down on the table that holds my vitamins immediately and I told her that I will not use it until it has a screen protector because I do not trust my hands at all now! Since March 20, I have just been praying with it.

Sean came by last week and he was going to charge his phone on my charging pad because that’s how I charge my phone now because I cannot plug my phone in anymore because I can’t pull the plug out of the phone anymore.

He was surprised when he saw my phone and I told him to bring it over to put on the table with my vitamins on it. I told him that there was no screen protector and he told me that I am in ‘purgatory.’ I told him, absolutely! It will be that way until I get a screen protector on it.

I hadn’t even called him to tell him that I got a new phone because I did not trust my hands at all to control it without a projector on its screen!

Well, my Mom was able to this morning whilst I slept and she laughed that Sean referenced purgatory and I told her that I sent him to DC for school and we went to church every weekend. It’s normal for him.

Tonight is the eve before ‘go time.’ my Mom is picking up the van tomorrow night. I am seeing a new specialist on Tuesday. I’m not sure how I feel about that. My Mom opened all of my March orders today. It’s kind of a ho-hum day, but I am really diggin’ this Lenten silence!!!

I pillaged in silence today for the second time. I didn’t drop any pills… AGAIN!!! I think that will be a new thing, at least for Lent.

I am still focused because I have another doctor appointment on Tuesday. With a specialist. I never thought that life would be like this! I really am collecting doctors now for sure!!!

I’m still trying to make sense of my weight loss. I have been on nutrition shakes for two years. And I thought that was helping. Maybe not. I think I will ask my doctor to see a nutritionist again when I see her in April because I’m doing that now to re-check my weight.

It startles me. So very much!!!