Category: A Bit Of Randomness

Today was miserable! I told my Mom that I want it to be 90° all the time now! Because this 50° is terrible!!! I spent the entire day uncomfortable!!!

if it was 90° outside right now all the time, I would be comfortable because my air is finally fixed! But I know this is the horrible ‘change of season,’ but it seems to be dragging on because for myappointment next Tuesday I still have to wear a hat?!

The heat is on right now. This is really doing terrible things to my body and feels awful!!!

I called today and made my optometry appointment for July and my mammogram appointment for November. I only have one more appointment to make. We should have made my six month appointment right after my last appointment with my internist but now I will have to wait until July to make it.

My Mom called Creative Mobility, and we secured those new dates and reviewed the May dates that are coming. I have my Visual Field Test on Tuesday. I don’t think I like that this is my life now, but it is…

I haven’t had a Visual Field Test at Henry Ford for a while because my insurance changed when I was working at CCA. I had a Visual Field Test at Fairlane when I was about six months pregnant, in college, and still on my Dad‘s insurance.

I learned that I had Optic Neuritis in my right eye, even though I thought MS was dormant when you’re pregnant? I am going for my Visual Field Test downtown this time. I had two separate Visual Field Tests in Lincoln Park. I think at Henry Ford, it is a little bit better and I will find out on Tuesday. I DO know that the results of this test will be bad. I have warned my Mom because I know what I see after 24 years in, it’s going to be bad.

So, I checked this coming week’s weather report. I wanted to see what it was going to be like on Tuesday:

Yikes!!! I have my Spring/Summer chapstick all ready to go, but I am still rocking my Pomegranate because it is STILL way too cold! Will be wearing my winter coat out on Tuesday.

The heat is on in my house right now and I am wearing a hat! I would like to wear my Cucumber Mint chapstick soon!!! It’s already May?!

A Facebook friend, posted this, and I’ve thought about it a lot today… We both have MS.

I don’t think that I am pissed about it and I don’t think I have ever been pissed about it. It’s unfortunate for sure and not how I wanted my life to turn out but I’m handling it. There is no other way.

I think that’s all that can be said about this mother b*tch of a disease. I was told that I am not dying because of this diagnosis, but I have to live with it and that is proving to be so difficult!!!:

I think that I have reluctantly accepted this because there is no other way.

It has been miserable all day long! I woke up and got out of bed, and my quads and my butt muscles were spasming so much that all I could do was just kind of grunt, “Oh!” Oh, this rain ain’t no joke!!!

After I was up a while and had my prayers done, my arms, and hands stretched, the spasming started to lessen.

The rain continued as I ate dinner and the spasming was in my thighs now. So, my legs have been hurting all day long! I see that it’s not going to rain tomorrow, so I hope that makes me feel better but at this point, it’s NOT much ‘better’ anyway.

Today during our routine, my Mom told me that she was, “Tired, and grouchy too-” I cut her off immediately and told her that I am not grouchy! She told me that I was ‘short.’ by that, she means that I am terse. If that’s the impression that I’m giving off…?

She was transferring me and I said, “Chronic illness is…” and then I started to cry. I don’t think I even finished that statement. I don’t even know if I knew what I was going to finish it with. Difficult maybe?

But, I can’t think about that too much because my Mom is getting the van tomorrow night for my vision test on Wednesday. I never thought that my life would be like this, but regretfully it is.

My Mom picked up the van, my alarms are set for tomorrow, and I will twilight sleep tonight.

I have my Visual Field Test tomorrow. It has been a long time since I had one of those! I was supposed to get it last year, but the doctor changed it to be in Troy at 2 o’clock. I live in Dearborn. That is not happening. We are going tomorrow at 2 o’clock downtown.

I think that I am nervous. I already know that it’s going to show not good stuff. I just don’t want to see how bad I see. I will tomorrow though.

I had my neural ophthalmologist appointment today. I had to expected for my Visual Field Teat to be terrible because I know what I can and cannot see. I can no longer have my Mom or Sean stand behind me to my right. My brain cannot make sense of that!

I have always said that my right side is my ‘poop side’ because I discovered that I have osteoporosis in my hip in 2024, I tore my ACL in 2000, and then I tore my meniscus in 2017. All on my right side!!! it’s totally my ‘poop side’!!!

I was lpso nervous for this Visual Field Test! The last time I took one, Sean was seven. I was very nervous that I wasn’t going to see all of the blinking lights. A nurse named Ashley helped us and administered the test. She told me that I was doing a beautiful job. She had red hair!

After my Visual Field Test, I had an appointment with my neural ophthalmologist. First, a nurse came and gave me a battery of tests and then after that, I think she was a resident. She did a bunch of tests as well!

Finally, my doctor came in and they did tests together on my eyes:

My doctor, who is the replacement for Dr. Skarf who retired, told me that my eyes had stayed the same. I couldn’t believe that?! I see so much worse! I see my optometrist in July and I will ask him about the battery of tests, the nurse, the resident, and she completed.

I thought that my checkup was going to be terrible because it had been so long had that test administered to me. She wants me to see her again in two years.

There is evidence of disease progression however. My Mom had to push and hold my back up so I could put my face into the box. I told my Mom what it was like looking in there. It’s like staring at Willy Wonka and the Chocolate Factory when they are with Mike TV and he gets sucked into the television. Everyone is wearing white in the room and the room itself is white. I stare into that little box that is white and that’s what it makes me think of.

I used to be able to take this on my own without someone holding my back, but it’s been almost 25 years now…?

I have been thinking about my last neurologist. He retired in 2016 and he had the best and warmest handshake because his hands were so big compared to mine! He always reminded me of Lex Luthor:

I remember the first time I saw him, he got his little handheldlight and got all up in my face! I remember the first time, I kind of laughed like, is he for real?!

I was telling my Mom that after I just saw my new neural ophthalmologist. I told her that I was caught off guard by Dr. Elias getting all up in my face and I kind of chuckled a little bit. Then I told her that he did it 16 more times. She was confused by that statement and she asked why he did it 16 times. I told her that he was my neurologist until 2016.

My Mom took pictures of my appointment with my new doctor:

I did not chuckle when she got all up in my face because I didn’t have to ask myself if she was for real because she was and that’s how it is now. I’ve been having these exams for a long time!

I pillaged in silence again today. That really helps me to concentrate and keeps my mind clear. This weather is completely killing me! I am looking at my appointment for Tuesday morning. It is for a CT scan and it is at 8 o’clock in the morning.

I’ve looked at the directions and I think I am NOT going to go to sleep. I will just hang out in my chair and then my Mom will get up at about three in the morning to get me ready to leave the house by 7. Sean will meet us because my appointment is at 7:45 downtown in case he has to transfer me.

I am a little bit concerned about my chapstick? It’s supposed to be warm that day, but I’m leaving the house super early so I think I can continue wearing my Pomegranate. My Spring/Summer chapstick is all ready and it has been since March but it has not been warm enough for me to wear it yet. This weather is crazy!

This is the earliest appointment I have had to date. I went to the dermatologist at 10:45 in the morning. We made it. I hope that we will make this one as well! I have never had a CT scan before.