Author: Jen Rios

When I woke up today, I thought about what I had to do and today is pillaging day. My Mom came into my room to get me out of bed, and I looked at her and said, “ I don’t know how this happened.”

I was speaking of the hum-drum daily tasks that are getting so much more difficult and I’m homebound now. We made another appointment yesterday for June. I wasn’t ready for this to happen. In March, April, and May, I have three appointments each month. These are BIG appointments that I’m having!

When I said that to my Mom this morning, she just answered, “Me neither.” I didn’t drop any pills today either and I did it in silence for the fourth time. I think that’s my new thing!!!

Today, when I woke up, I saw that I had a message that my ibuprofen prescription was refilled. I messaged the prescription in yesterday in MiChart and also messaged the specialist to change his orders for my CT because the urologist changed her order and I don’t want to go twice. That will cost me $90?!

I seriously do not know when my life changed like this but this is all there is now. I now have three doctor appointments in May as well. I had three in March, four in April, and three in May because the urologist moved up my CT scan and I am going for my visual field test that is overdue but my eyes are still my eyes! That visual field test is going to be bad (meaning that my vision will be quite bad) and I’m already gearing up for it now.

It seems like 24 years in is big time. I never thought it would be like this and I can’t believe that it is now. There’s nothing for me to do except to accept it and deal with it. I was told once that I’m not going to die from MS, the real challenge is that I have to live with it. It’s definitely getting challenging now!!!

My head is spinning!!! I saw the urologist today and I liked her a lot! She put in orders to move my CT scan to an earlier date. Now, my CT scan is May 13. I will call the other specialist who piggybacked on the CT scan for more scans to move his orders to May 13 as well. I don’t want to have the June appointment.

Do you see how my head is spinning, now?! So we were in the hallway from the urologist and my Mom called (because she is for real my caregiver no) and made the appointment for May. From there, since we were at the main hospital, I got blood work done there for my CT scan in May.

After we left the hospital, we stopped at the post office and got stamps to mail cards and I got my MMR booster because I’m not immune anymore from Meijer.

I know that I will crash tonight and I’m concerned that I will awake probably about five or six in the morning (like I did last month) and think that I have to go because we went somewhere today.

My brain is completely changing now and doctors appointment keep piling up! I told my Mom that I remember when I would just see my neurologist once a year for probably the first 15 years that I had MS. Now, 24 years in, I am still collecting doctors. My head is COMPLETELY spinning!!!

I have two appointments next week and one more the week after. Today, Dr. K. (that’s her name) told us that 23 pounds of weight loss in six months is a lot. I knew it was! I wonder what I will weigh on the 22nd?

Tonight is the eve of “Go Time” for April but I don’t even get paid until next week! Let me ’splain ya:

This appointment was made by my doctor in January. She made this appointment after my ultrasound found that I have a calculus in my bladder.

So, I have a bladder stone. I am hoping to get it addressed at the urologist tomorrow. And then after I go downtown to Henry Ford, I’m going over to Meijer to get a measles vaccine because I am no longer immune. I found that out from a blood test from my other doctor last month.

After this appointment, I have one more week to rest before go time again… with two appointments. And then one more appointment the following week. I really can’t wrap my head around how serious it is getting for me… This is all pretty scary!!!

So, I was just reading uplifting story about a young girl, her siblings, and her mom.

I was absolutely enjoying this read, and it was about an Easter offering at church. Her dad had just died and they were just scraping by but hearing the pastor say that, they decided to try to save money. The pastor shared with the congregation that they were going to give a special offering for Easter for a needy family.

I was loving reading the story because I could tell that the special Easter offering from the congregation was for her family. I read how it was raining on Easter morning and they did not have an umbrella so they were soaked and her sister’s foot got soaked because she had cardboard in them to patch the holes.

I read about how some kids were talking about other people’s attire and were all ‘judgy’ and stuff. I read that the priest was addressing the congregation and her mom gave each child $20 to give and she put in $10. They had saved $70 by scrimping. They decided to just get a 50 pound bag of potatoes to eat so they could save money for the family.

But then I started to cry a whole lot and so I put my phone down to blow my nose, and I lost the post!!!

I read the story on Facebook so I’m scouring Facebook to see if I can find it again. I’m sure I will, but it will take some time. I’m totally bummed that I didn’t get to read the entire story!!!

I think that I’m finally realizing how serious things are now. I have four appointments in April. Three doctors appointments.

I’m seeing the first doctor to address what they found in my ultrasound in January. Then I am seeing my dermatologist because I have skin tags on my neck and it hurts when I take my medical device off. And then the final doctor is because I have lost so much weight.

I will get a referral for nutrition services again, but I think it’s something different. I will get a CT scan in June so maybe we’ll have some answers. I pillaged in silence today and I dropped two wafers. That stinks! I did it at the tail end because I was tired. It was my last pill that I was putting into my pill box.