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Last night, when I was getting ready for bed, before I transferred in, I felt cold pricks on the backs of both shoulders. I have a tank top on when I transfer to my bed and then I put my T-shirt back on once I’m in bed. So, I completely felt the cold. It’s been a year since I felt those cold pricks! I forgot, but I was totally reminded yesterday. My ribs have not started to shake yet but it’s getting colder now and I’m a little bit nervous…

So, about those seven questionnaires…

When I logged into MyChart to confirm my virtual appointment, there was questionnaires I had to fill out. I always have to fill about two or three of them. The same questions every year. It’s old hat. But this year, it was different.

The questions that they were asking were new to me. For the first time, I had no qualms answering them honestly. And a few of the answers are, “I cannot do that.” It was not hard for me to be honest in answering this questions after having this disease for 25 years because my life has definitely changed now that I am homebound. I have a new mindset. Oh, it hurts all the time and there’s nothing I can do about this! I just have to endure it.

When I confirmed my appointment for Wednesday, I told my Mom about the seven questionnaires that I had to answer and I told her the questions they asked. I told her it shocked me and I wasn’t ready for those kind of pointed questions, but I have had this disease for 25 years so they know the progression and they know where I pretty much am now.

But, what further shocked me was the fact that my mom has been answering those questions regarding me for years now. She answers the questionnaire that we get every three years from NelNet.

That’s the company who held my student loans. When my loans were discharged because I am physically disabled and on Disability, they send a questionnaire every three years to ask if I am still disabled. My mom takes care of that because,OF COURSE I am still disabled!

Put these questions they asked things like if I lost my train of thought. There were responses there were five I could choose from. No, rarely, somewhat, often, and every day. I answered somewhat to as much as I could, but it also asked if I dress myself, and I could honestly answer with much difficulty! Because at this point, I still can do that, but I think that’s going away pretty soon. my mom helps me with that. She has been helping me for a while, she just helps a little bit more now because of the progression of this disease.

I think it’s funny how when I was first diagnosed, I thought they would fix me. But now after being in the system for 25 years, and seeing all of the loss of my abilities, they can’t and I have to do this myself! So that’s what I do, that’s why I am on supplements because they make me feel better. Dr. Chamas give me a referral for acupuncture and Reiki because I’ve had both of those and they do help me feel better.A cure is BOT coming. I just have to endure this. Sometimes that gets rough for me and I cry. I was kind of there yesterday, but it is what it is. I hatesaying that statement, but it’s true.

I still not OK with this. I guess I’m happy that I don’t have to worry about it so much because I still have weight to lose, but I think this is a new trend. I am getting sicker. When it becomes a problem, I will consult a dietitian again I guess.

I have had a few donuts since I’ve gotten weighed though and Thanksgiving and Christmas is coming so… I don’t get weighed again until March.

I tried finding an old post that I could repost that I could put a song in. Sheryl Crow. no one said it would be easy is completely in my head and I wanted to share it again, but because this weird AI stuff on my blog, I can’t! But just know that is playing in my head right now!!! Hopefully, I will find the post tomorrow because the song was still be there.

I see my Primary care doctor tomorrow. that’s it for the month of September. I have had my heat on for two days and I think I’m going to wear my winter coat when I leave the house tomorrow.

Last night, I was completely reminded how much neuropathy sucks! It seriously ain’t no joke. Yesterday, when my Mom put my shoes on to get ready to go to bed, it hurt the outside of my right heel. When I was laying in bed to go to sleep, it was NOT any better!

When I am in the house, and not leaving, I do not wear shoes anymore when I sit in my chair. My mom rigs my legs so my heels are not touching anything. Ever since the pressure sores of ‘22, from April to November. That was rough! It looked really rough, but I can tell you that I don’t think I felt it as much as it hurt for real. Thank God!!!

I ended up going to the emergency room and they thought that I had Mersa. I thought for sure that I would be admitted, but I was wearing my compression socks and when my Mom pulled my socks off before the doctor came in, the scabs came off, so my sore looked okay. The doctor wanted to give my Mom an honorary wound care award, but she just wanted my sores gone like I did. I think I went to the ER in July and they weren’t gone until November.

I’m lucky that they have since healed and it does not look like anything happened to my feet but I have to keep my heels raised because if they rest on anything, my heels hurt. It was especially difficult when my wheelchair was broken last July? because I had to wear my shoes all day long! My mom was very concerned, but I told her that my heels are stressed, but they’re not going to turn into sores again.

It just really stinks that this neuropathy is killing my feet and there is nothing I can do about it. My Mom covers my feet at night with a blanket because they get cold. I told her about how my feet felt last night and she wondered what she could do. I told her that she can’t do anything and it just sucks to suck! I eventually got to sleep. I wonder what will be like tonight?

I’m so excited for the fall weather, but I’m not sure that my body can handle it anymore. That stinks because it’s only September and cold is a thing now. I remember I told Sarah that it felt like my feet were dipped into ice cold water up to my shins one night in the summer. I wonder what it’s going to be like in the fall and the winter?! I’m sure the outside of my right heel is not going to feel very good.

So think that Fall is finally here!!! It will be in the high 60s all week until Saturday but then next week will be in the low 70s. But I’m leaving the house Tuesday so I think that I may smell Fall but it doesn’t matter because I’ve already switched over to my Pomegranate chapstick.

I just got accepted into the Autumn Vibes Facebook group and I’m kind of excited! Red fall trees are my favorite And I think that’s why I like the fire bushes that I’ve seen. I hope to get them for myself one day. I’ve always hated the bushes in front of my house, but I don’t have money to change them out. Yet.

I like that the weather is changing because I have been hearing The Fray a lot on Apple Music that plays after my chosen playlist ends. I may have owned a CD from them because I remember a lot of these songs and I was still working and I was in our second apartment

I remembering my Fall candles and my Halloween candle holders. That’s where I have been for the past few days. What am I supposed to do with these memories?! I can clearly see our second apartment. It was so much easier to keep clean! But that may have to do with my physical abilities or rather my lack thereof now.

I think that these songs sound the same, but it’s a slice of my past:

I was playing Word Connect as my Mom went to lay down. I was just trying to decompress because it’s difficult to pillage sometimes and I dropped three pills, it was a mess.

She came home and everything was rectified. As I was playing my game, the song came on:

This song came out my first semester at Western. Back when I could still walk to class. Back when MTV still showed videos and I would watch it all the time. MTV played in the rec center back when I could still work out so I heard the song there too.

What am I supposed to do with memories like this?! It hurts a little bit because I can clearly see all of these memories. But that’s just what they are. Just memories. I can’t do that anymore. I can’t do anything anymore. But seriously, what am I supposed to do with memories like this?! I kind of think that I would like to forget them, but I know that’s not possible. I just remember them and regret.

I watched about 3/4 of some skiing movie on the Hallmark Channel. I did that because October kiss was coming next. I only dozed a little bit while watching it. I would really like that movie however, the kiss they share at the end is horrible! After watching the movie, you would think it would be cute because I think the movie is cute but, the kiss is not.

My Mom gave me eye drops so I watched another movie, this weather is weird, but I watched Stepmom. I cried. I’m really having a difficult time controlling my emotions.

I like that I am checking off my Fall movies before October 1 because then that is Hocus Pocus. I’m so excited!!!

It’s cold y’all!:

I made another executive decision. I changed over to Pomegranate, even though it’s supposed to be warm tomorrow:

Even if I do not finish this tube by October 1, I’m going over to Pumpkin Spice. Pomegranate was the first flavor they had so I used it in the middle of winter so I don’t think it’s going to be bad tomorrow even if it’s warm. I will be cold in the dentist office.

The humidity today made existence difficult.