Month: January 2026

Scary.

I pillaged today. Yesterday, my head hurt; and it hurt in a differently than it has ever hurt in my life.

Today, while I was pillaging the left side of my jaw hurt quite badly. It happened a few times when I was changing the supplement I was distributing.

It just caused me to stop and put my hand on the side of my face. 25 years in, things are starting to happen. It’s all a bit scary. #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…

I HAVE TO Get an ‘A’

Well, today I woke up to Tamika calling my Mom and making an appointment for May 27 like I wanted. Now my first five months of the year our scheduled!

I did not write yesterday that my supplement came in the mail and my Mom got it off of the porch before she went out to lunch. I needed that for tomorrow when I pillage.

Today, I also called my insurance company today to check up on when my homeowners insurance is going to come out. It’s covered by my mortgage company. Things are more set than I realized. That’s good!

I spoke to a woman named Ashley from Georgia and I told her I was in Michigan. We talked about the weather and she exclaimed that it was going to be 18° this weekend!

I told her how to heat up quickly when she’s in the car. It has been something I have done all the time and I never realized that Sean took notice. He tells me that he tells that to everyone and it works! I told him to put his wrists right up to the vents in the car because that’s a pulse point and it will warm up your blood quickly.

The only reason I know that is because I am so sensitive to temperature changes so learning that he has helped me a whole bunch! Ashley said that she was grateful to get some ‘inside baseball’ from someone who knows something about the cold. I laughed!

My accomplished feeling continues today because I told my Mom yesterday that, “I have to get an ‘A’ in dealing with the life I have been dealt!”

I never imagined that my life would be 100% MS but it is now and I STILL have to get an ‘A.’

Accomplished.

First of all, I can’t believe that my life is like this now, but it is! Let me ‘Splain ya what I mean and why I feel so accomplished today!:

I have been meaning to write about this from an article I read a few weeks ago now about people with chronic illnesses who wake up and have the same exact day from the day before. That is me right now. I’ll write about that soon hopefully…

But, back to why I feel accomplished!:

My Mom got me out of bed this morning (and it was actually morning! It was like 10 o’clock) and I thought about what I needed to do today. I know I had to make a few phone calls.

After I drank my nutrition shake, I decided to call Dr. Bansal. I called the ophthalmology department at Henry Ford and asked to speak to someone about making an appointment. As it turns out, we just leave a message for her assistant, Tamika. I decided to leave my phone number because my Mom was going to lunch with my aunts today.

The next thing I did was message my dermatologist. I had written about the fact that it is so cold outside and the fact that it is so warm in my house. Makes the air in my house really dry! Dr. Harris told me about that one he gave me the new contacts I wear now.

I messaged her because my skin is so sensitive now, 25 years into this b*tch, (I didn’t say that, but I thought it) I explained that my Mom coats my face with Neosporin. She puts it on my cheeks, under my nose, and makes sure to get my septum a whole lot! I asked her if I should be applying something different.

She should message me back in a few days. After I thought about that, I called Dr. Bansal’s office back. It takes a couple days for them to call back and I decided to tell Chris, who I spoke to, that I should leave my Mom’s phone number instead of mine because I’m not really awake during the morning hours at all but I can’t really handle that either.

Do, he took that all down and that felt good that I called two different doctors today. My dermatologist will message me on MyChart and Tamika should call my Mom tomorrow or Monday. That phone call is for an appointment that you need to make for May 27. I have to call in February. As I was waiting, it asked if this was a single annual appointment. In fact, it is!

It was already 4 o’clock, and I had finished praying, but then that got me thinking that I checked MyChart and it says I owe more money than my payment plan agreement. It just was charging for one appointment, but I had two this month. I saw the podiatrist and then I virtually saw the pain clinic doctor. Both of those are specialties.

it was super easy to adjust my payment plan. I spoke to Janice today and she updated in my plan so I will owe money until January 2027 at this point. It was really nice exchanging nice cities with her about staying warm in this cold. That was the first person I talk to in the day.

There is another specialty doctor that’s going to bill me for this month and then next month I have an appointment with my Urologist.

I felt really accomplished today even though I haven’t done anything. I really can’t believe my life is like this now but I’m handling it so I guess I feel pretty accomplished!

In my Back Pocket

So, I saw my podiatrist on January 20 and he told me that I was not having a problem with my toes at that point and he said just to see him on an ‘as needed basis’

I started feeling neuropathic pain on my right heel and it made me nervous! I messaged him about something topical that I can use for neuropathy pain. I sent that message on the weekend after I saw him. He responded Monday before I had awakened.

He told me that I may have been experiencing some problems due to my MS and I should speak to my neurologist and ask about getting a Lumbar Radiculopathy L5-S1.

Whatever that means. It got me thinking I talked with my Mom about it as well. I have decided that I think I will just keep that information in my back pocket for the time being.

I messaged him on Monday night to ask if my bone density scan that I had on January 22 would cover that image he was looking for. He responded today and told me that it did not.

It’s not hurting that badly… yet. But I think it’s good to know that I have a doctor who responds quickly in my back pocket for when I need something. I’m most likely will need something down the road and that’s so scary for me!!! #ItSucksToSuck!!! #MSsucks!!! 😒😒😒…

Lucky 13 OR Get This?! OR I am THAT SICK Now

So, I had appointment with a podiatrist because my toes were having a problem. My Mom did NOT want them to turn in to sores. I made the appointment because even after I changed my shoes, my big toes were still hurting!

Me seeing a podiatrist, makes the 13th doctor that I have seen. Lucky 13! I told my Mom that I am THAT sick. She disagreed, but then I asked her, “How many people do you know who see an endocrinologist? Because I’m seeing one next month.”

I am seeing the endocrinologist virtually so I don’t have to pay for a van rental. I know the appointment isn’t going to be much so I can just do it virtually. I am a ‘rule follower’ and I had my bone density scan done and we’re going to talk about that on February 19.

But, seeing this podiatrist, he was running so late and I did not like that at all! I remember a urologist made me wait over an hour, almost 2 I think. That one wasn’t that long but he told me I should just see him ‘as needed.’

We were at the doctors office late because he was running late. There was a traffic jam in the hallway as I was coming out of the exam room. A woman with a walker was trying to leave her exam room as I was in the hallway, so I just moved myself to the front desk and I just waited by the side as my Mom got ‘combobulated’ (that is still a word from Sean, I think he was five?) in my exam room.

There was no one in the waiting room so I struck up a conversation with the receptionist about this freezing cold! I told her that I am homebound and I only leave my house for doctor appointments and I had to have a doctor appointment today?! We both talked about how cold it was, but I was happy that I got it done in spite of this temperature:

I messaged my new podiatrist over the weekend for some type of topical cream for neuropathic pain. My right heel is starting to feel weird.

So, get this, he told me I should talk to my neurologist about a ‘Lumbar radiculopathy L5-S1’ whatever that means?! I messaged him back and asked him if that information could be gotten from my recent bone density scan or if I need to make another appointment? I sent him that message after 5 o’clock so maybe he’ll message me tomorrow because I have a podiatrist because I am that sick now.

This is a lot for me to deal with to say the least?!!!! #ItSucksToSuck!!! #MSsucksAfterTwentyFiveYears!!! 😒😒😒…

Hangin’ In

I thought to change the title page of my blog to ‘Hangin’ In’ because that’s pretty much what I do now. It pains me to say it, but, I absolutely am spinning my wheels at this point.

I started my blog in November 2013, with disease progression and everything, I can’t even remember how to change it!?! I was going to change the picture that had me in my manual wheelchair back when I was still working:

Screenshot

That’s not me anymore. I am homebound now and I just exist between doctor appointments. I have been saying that a bunch and I’m trying to get used to it. Just like it is easy for me to say, “Eating is no longer easy or enjoyable” now. Here’s the picture I should change it to:

I changed the Bio on my title page on January 10. I took this picture on January 1. My Christmas tree was still up! I tried to smile a little bit, but I think that it’s gone now for the most part.

#ItSucksToSuck!!! #MSsucksAfterTwentyFiveYears!!! 😒😒😒…

Grieving

I saw this meme on Facebook today and the fact that I’m recovering from a 3-fer and this weather is absolutely horrible and all of the snow is just awful; it got me thinking about how much I have grieved in the past 25 years. I am still grieving and today it’s more than a little bit hard!!!