Category: A Bit Of Randomness

I had just finished my dinner when my Mom was taking Leia out for a walk. We had already decided on the movie we were going to watch tonight, but I checked to see if Love and Other Drugs was available and it was. It was on Hulu.

I started the movie just as my Mom was leaving with Leia. She told me that she did not want to watch this movie and we decided on a different one. I told her that I was just going to watch it until she came back. I think I got about 20 minutes in before my Mom got back with Leia. She told me that we could just continue watching Love and Other Drugs.

I thought about it for a moment, and she went into the kitchen to heat up some more of her food. I started telling my Mom about the movie and the more I told about it, the more I realized that she should NOT watch it!

We watched this movie a few nights ago because we found it on Disney+. This movie reminds me of my aunt Rita! I am back at her house, having ‘tea on the veranda’ with her. That’s probably why I dig the Golden Girls because their wicker living room furniture was like the furniture in my aunt’s sunroom, which she called her ‘veranda!’

Watching this movie again took me right back there and I have known so many of these lines for all of my life!!!:

I watched the rest of Love and Other Drugs. A new and different scene spoke to me today. Even though it’s not MS, there are similarities. I tried capturing it on my TV by turning it up really loud and recording it but I can’t control my hands that much anymore. It’s like that now.

The scene that spoke to me today was when Jamie spent the night at Maggie’s house and he is leaving and she tries opening the pop tart foil wrapper but she can’t. I really appreciate how Anne Hathaway portrays the loss of hand control!

I have thought of other scenes from this movie as I try to open my Adkins peanut butter cup wrapper. I have one every night before I brush my teeth when I take my pain pill because I will sleep the night without my compression socks. You have to eat ibuprofen with food so….

I really paid attention to that specific scene this time around and I cried because I was by myself because my Mom is getting her hair done. I looked through YouTube to find the specific scene I was looking for but it’s not there. I saw this short and it got me thinking, she was diagnosed at 26. I was diagnosed at 18. Neither situation is fair and this short made me cry because this is my real life:

Love and Other Drugs is on Hulu. It’s also available for free on YouTube with commercials. I don’t own this movie yet.

I guess NOTHING has EVER been easy for me and it seems that things have not changed at all!!!

So let me ‘splain ya:

Yesterday, I received a letter from CMS. I did not recognize that company, and once I opened it and read it, it informed me that my wheelchair has been denied.

WHAT?!!!!

I tried to remain calm and waited for my mom to come back from her walk with Leia. When she came into the house, I just handed her the envelope, and I told her that I found out what CMS was. I told her that I was completely at a loss! something that I thought would be easy, just getting a new PowerChair, but it turns out that there is a whole lot of red tape involved!!!

My Mom took pictures of the letter and told me to email them to Diane. She is the occupational therapist who fit me for my wheelchair renewal in June. She had previously fit me for a custom manual chair in like 2015 and then she fit me for my first PowerChair in 2018.

Diane called my Mom today. My Mom came into the house and had her explain it so I could hear what was going on. Turns out, it’s just a little bump in the road. Diane completely understands what needs to happen and she did not get back to me right away because she was waiting for another person at National Seating and Mobility (NSM) to get back to her.

Brenda is the woman at NSM and she received the denial letter as well She started looking through my medical file and saw that Dr. Chamas had approved everything so Diane just needs to resubmit it as Dr. Chamus as my referring doctor.

In 2018, Dr. Cerghet was my doctor. She still is my doctor. But I am super Involved with Dr. Chamas now because I get a weight and bloodwork every six months with her office.

This letter was super shocking to me, but I love that Dan knows what to do! This is Diane to the rescue!

I was foolish to think that after 22 years, things would work like clockwork with having MS but that is NOT the case! It’s nothing but red tape! I am beyond frustrated, and I can’t even handle it on my own anymore! Talking on the phone is difficult for me so talking to my medical supply company is not an option for me. My Mom handles that because she is my caregiver.

We were specifically talking about the prescription and that I am going to that specific doctor on Friday to hopefully get that amended. The person we spoke to needs to send emails to other people in charge before my situation is rectified.

My Mom was on the phone for a while this afternoon, and this is NOT EVEN rectified. And this news just days after my chair was denied!!! It’s really a good thing that next week is “Go-Time” because that’s when I see the doctor two days after I get my haircut! Despite the red tape that I am sifting through right now, I feel that I am in a good place for my care but it just stinks that it’s not seamless. FAR FROM IT!!!

I noticed this yesterday as I applied my chapstick, but today it’s confirmed! I am more than halfway through my tube of chapstick! I know that because when I open the chapstick to apply some, a lot of wax is sticking out, so then I have to roll the plunger down so I can comfortably put chapstick on.

This is my last Cucumber Mint chapstick, and that signifies that I will switch to Pomegranate before October 1 which is Pumpkin Spice!:

This will be a complicated changing of the guard. I will use that little bit of Pomegranate before I open a new package because my current Fall flavors are almost gone:

But this year, I also have one more salted caramel. I do not like that flavor at all but when I bought the package of my Winter flavors, it had that instead of ginger spice, which is more of a winter flavor. I bought a bunch of those because those are special to me because they remind me of my Abuela.

I ordered all of these fall flavors a couple years ago but I haven’t used them yet. This package is my perfect fall flavor package!!! It’s Pomegranate, Chai, Pumpkin Spice, and Vanilla Maple.

So, once I open the new fall flavor package, I am going to put it in my Spring flavors container the new, unused Fall flavors until the old ones are used up which will be before Thanksgiving! I will have to buy another pack of Cucumber Mint, so that I am prepared for next Spring.

Next week is “Go-Time.” we are getting our haircut on Wednesday and then I am going to see a new specialist for a tuneup on Friday. I have had MS long enough so that I’m not nervous to meet new doctors. I am really glad that he is not 25. I saw his picture there was gray hair at his temples. I like that he is seasoned.

Tomorrow begins go time for me for August. We will get our haircut and my eyebrows waxed and I am seeing a specialist on Friday. I want to explain why this ‘change’ is complicated’:

As I posted yesterday, this is my last tube of Cucumber Mint for the Spring:

Now, I am leaving the house tomorrow, so I am NOT going to take my bag o’ chapstick with me. So I have decided to make the executive decision to use the Strawberry Sorbet that I bought a couple years ago to try. I don’t love it but I don’t dislike it so much as to not use it. Last year, I just used it on Saturdays but I forgot to use it this past Saturday because of what was going on with my Cucumber Mint.

So this is what my Spring/Summer flavors look like right now. But here’s where the complication begins, after I finish my Cucumber Mint chapstick which is in a bag right now, I will finish the Pomegranate, and then I will put all of my Fall flavors in there, until my other pack of my leftover Fall flavors from last fall is gone. Then I will switch it back and will buy more Cucumber Mint for next Spring.

I know that there is no reason to pay this much attention to the type of Chapstick you are using but, it keeps my mind busy, and it wasn’t until I became homebound that I can use and tire tubes of Chapstick. That kind of makes me feel a little bit accomplished!!! I’m trying to look at the bright side of things…?

Somehow, this rain is killing me even more than it normally does! I am trying to decide which songs I want to post, but I feel too terrible to Think about it any further. Have a doctor’s appointment tomorrow….

I had that appointment with the specialist today. A few days ago, I was a little bit nervous, but then I wasn’t.

I explained to my Mom a few months ago that all of these doctors appointments are nothing more than to get them to sign the ‘permission slips’ that I tell them to sign. I definitely do NOT want to sound or be haughty or anything about this but I have had MS long enough to tell them what I need.

This doctor told me that the last time I was seen in this clinic, was in 2013. I told him what I needed and he put the request in the computer. We had to wait almost 2 hours to see him and I told my Mom that’s about right because I came to this clinic in 2001 (it’s the same specialty but I don’t think it was the same office) and I had to wait two hours then and when that doctor came in, he did not sit in the doctor’s stool, but sat in the chair next to me. I will never forget him looking at me and telling me that, “MS sucks!”

I remember being surprised, first off, that he sat in the chair next to me, and then for him to say that to me. I that was the first time I heard those words from a doctor and I think I may have looked at him almost teary-eyed, and said, “Yeah.” that was way back in 2001, I didn’t even know what to expect back then but I already knew that it started sucking!!!

Now, for the rest of the year, I just have two doctors appointments in September and then I am done with doctors for this year. I think it was in 2022 when I got my pressure sores on my heels that I understood how this is going to work with me having MS for this long and the fact that now I need multiple doctors in different specialties to handle me.

I was telling my Mom today, that two of the last three doctors we saw, told us, “If it ain’t broke, don’t fix it.” I had to call the specialist after getting the referral off MyChart from my internist. I have been handling this for 21 years, but it turns out that probably in mid June that it to be ‘broken’ so that’s why I went to the doctor today. He signed off on everything and now I’m good to go!