Author: Jen Rios

I’m really not feeling well handling this osteoporosis stuff so I decided to watch something to keep my mind off of it. I’m feeling kind of nostalgic and my Mom recently bought this movie on Xfinity so I watched it today.:

I have seen this movie since it came out when I was a child. There’s something about the theme song in this movie that I absolutely love! It has always reminded me of my aunt Rita:

I always thought that my aunt Rita dressed like Diane Keaton (who is ALSO left-handed!!!) my aunt died when I was eight and she didn’t have kids. I remembered that I was at a friends house, and I was watching TV while they were in the shower, when he came downstairs and saw that I was watching this movie, he asked me if I was a middle-aged woman?!

Well, I am now, and I really like this movie!!!

I had my third virtual Speech Pathology appointment today. I have been tired after all three of those visits! Today, I asked Meira kind of exasperated as to why I was so tired, and she answered simply with, “Well, you HAVE been talking for 45 minutes!”

She did not break up with me, but she dismissed me again! She told me that I am speaking slower than before when she met me in October 2021, but I am still intelligible. She told me that I can text her whenever I want to for accountability and to get another referral when something changes.

I had texted her about me being diagnosed with osteoporosis the day I read it. I told her that “I have that now so…” and she just laughed and told me when I have changes in my speech. She told me about a woman on Instagram with ALS but I told her that I am not cool enough for Instagram! She wants me to watch the Super Bowl this weekend because she knows that I loved football since I have met her but I’m not so sure about that…

Well, today is Monday. My aunt Iris was able to transfer the information from MyChart to an email. I emailed the results to my naturopath. I see him on February 21.

Neda from my internist office, called my Mom’s phone because that is the phone number that I have in my MyChart. She is more reliable to speak over the phone than I am. Dr. Chamas gave me a referral for endocrinology. I made that appointment today. It’s in May.

It looks like I am collecting doctors now. I have had a Neurologist for the entire time that I’ve had MS. I saw a neural ophthalmologist when I was pregnant because I had optic neuritis then, but he told me that he couldn’t do anything because I was ‘super pregnant.’ I saw him again when Sean was 10 and I had an and I had a visual field test and then I saw him a couple years ago. My optometrist told me that he is retiring at my optometry appointment last July so this year when I see the neural ophthalmologist, it won’t be him.

My first neurologist and his nurse retired, and now my neural ophthalmologist in here I am, still sick. I think I have this whole Chronic Illness Care thing down. Not like I wanted it, but I can do it. My MS is getting serious now and I wonder how many doctors I will end up collecting when it’s all set and done?

I had my bone density scan yesterday. I was a little bit nervous because I haven’t had one before and I kind of thought it would be like the movie, Passengers, but it wasn’t. I got a notice from MyChart about the results on our way home. My Mom was headed to Meijer and she read me the findings in the parking lot because I can’t see my phone with my contacts on.

She read the results to me as I sat in the backseat of the van. Turns out, I have osteoporosis. Well, sh*t!

I had bouts of panic-crying like I had just broken up with someone! I didn’t like how I felt yesterday at all!!!

Before we left the house yesterday, I told my Mom that wheelchair users just get osteoporosis eventually. I remember when I watched that series Push Girls, one of the women had it! I told her that not thinking that I would have it as well! But I do. Well sh*t.

I remember that my hips were burning when I woke up on October 28, 2023. It’s the burning that I felt that woke me up. That is when I thought something was different in my body! But why wouldn’t it be?! I have had MS for 23 years, been a manual wheelchair user from 2006 to 2016 where I got fitted for a custom manual wheelchair and then in July 2018, I begin using a power chair. I am on my second power chair. I got it on December 14, 2023.

Today, I realized that I have felt this way before. 22 years ago. The Wednesday before Thanksgiving when Sean was still in NICU, a nice doctor, I can’t remember his name, but I can remember his face. He was a little bit older than me, but still young, and he had brown hair. He complemented Sean’s onesie that was way too big for him but I told him that I would be getting preemie clothes that weekend. He was telling me about the brain scan that Sean had as was customary for all premature babies.

He told me that there was some abnormality in it. That freaked me out!!! He said that it could be brain bleeds or a normal variant. Another doctor was going to review the scan the following Monday. I remember that being the longest of weekends, but EVERYTHING was back when Sean was in NICU!

Just like I had that long weekend 22 years ago, this weekend is equally as long because I have yet to hear from my PCP about the results, and I will be forwarding the results to my naturopath, but all this cannot happen until Monday.

I talked this over with my Mom yesterday, and we both decided that I am safe in my wheelchair and the fact that I am home bound helps a little bit. I had to do a little bit of online research (which I hate) but I didn’t know much about osteoporosis. I only did a little bit before I stopped myself and told myself to just wait until the doctors talk to me on Monday.

I had my ‘cry out’ yesterday after getting the news, so I don’t think I will cry anymore but I don’t like this! My Mom told me that I looked like I had been punched in the face after getting that news. That’s how it felt and it still feels a little bit. I will just have to wait until Monday for some answers.

This is NOT a daily occurrence, but it happens from time to time. Let me ‘splain ya:

My sleep schedule is completely off and I don’t wake up and get out of bed till about 2 o’clock in the afternoon. So 2 o’clock is my morning and I’m telling you that for purposes of this story:

For breakfast now, I drink a nutrition shake. I drink that shake after I have taken my morning vitamins on an empty stomach. My Mom will hand me a nutrition shake in my left hand and she is coming out of the kitchen because I am left-handed and that’s the closest one to her as she comes into the living room. I shake the nutrition shake with my left hand and use my right hand to twist off the cap.

That is except for THIS morning (which is really the afternoon) because my right hand could NOT twist the cap of a nutrition shake off the container. I switched hands that I was holding the container in and tried to twist the cap off with my left hand because that hand is stronger. It was not happening! I think it took me three or four times from each hand to try to get the shake open.

So, this morning, my hand strength was nonexistent. I am squeezing my therapy putty every day and it still feels like clay rather than Play-Doh. In about April or May it will feel like Play-Doh and then I will throw it out and get a new container of putty on June 18. This is a little bit concerning to me because my disease is progressing every day and I wonder when my abilities will be completely gone but I’m not there… yet.

Today, I had an appointment with my Speech Pathologist. Her goal today was to get me tired and it completely worked! About 17 minutes in, my eyes started to hurt. My speech slipped a few times as we spoke, but I was able to correct it.

I met her in October 2021 for my swallow test. I started seeing her after that. She told me that I am not unintelligible but she told me that it is tiresome now for me to speak. It really is! I am still trying to wrap my head around that!

She gave me homework. She told me that I need to have 2 30 minute conversations with someone and that it counts if I talk to my Mom. She also told me that conversation with Sean counts as well.

I called Sean today and he agreed to help me with my homework:

I got an ‘A’ today and that makes me feel good but I don’t like thinking about how difficult it is becoming to speak now…