stardustinmyhands

[stardustinmyhands]

[stardustinmyhands]

[stardustinmyhands]

12/31/24

This yr wasn’t a bad year. I was in the hospital once for low sodium levels.

I met my boyfriend who I’m madly in love with.

Yesterday my wife bought me a heated blanket; king sized.

I love it. I have it on my bed and it’s underneath me. Keeps me perfectly toasty. I can’t wait to take it to my boyfriend’s home. He keeps his bedroom at 60°. So this will feel amazing at his place.

My boyfriend’s ex and daughter are visiting, they are staying with him. They don’t leave till after his birthday which is Saturday. I don’t get a new yrs kiss from him or get to spend his birthday with him. I’m bummed about that. I’m excited to see him again.

Health wise I’m no better or worse. I have my days. Right now my left hip is hurting, but my heated blankie helps with the pain.

Right now I’m writing in my journal and watching Lady Gaga on YouTube.

Have a happy and safe new yrs everyone. B

[stardustinmyhands]

12/30/24

Update I didn’t get Covid. I didn’t get sick and tested negative today for Covid.

Damn

I was with my dad and I he and my 2nd mom tested positive for COVID.

Masking up tomorrow for sure when I go to work.

[stardustinmyhands]

Damn

I was with my dad and I he and my 2nd mom tested positive for COVID.

Masking up tomorrow for sure when I go to work.

[stardustinmyhands]

Fuck this one hits home.

[stardustinmyhands]

Cleaning and listening to Christmas music.

It took me forever to get started this morning.

Last week I feel run down and out of it completely. My IVIG helped that as it usually does.

I worked 3 days (Friday, Saturday and Sunday.) in a row, 8 hr days.

I’m off work now till Saturday now.

I don’t get to see my boyfriend for like 3 weeks. I didn’t see him last week either. It’s cause his daughter and his ex are staying with him. He doesn’t want me to get to get mixed up with ex drama. They are also staying with him too. So I’m glad he gets to see his daughter, but I will sure miss him. I’m not looking forward to not seeing for that long, but I can’t do anything. Children come first.

[stardustinmyhands]

I feel so left out today and disoriented. It sucks.

[stardustinmyhands]

I feel out of it and down today.

I don’t know why.

[stardustinmyhands]

I just got a call from the OBGYN

I DONT HAVE LICHEN SCLEROSUS

It was a bad yeast infection. Which they already treated.

My pap was normal too.

[stardustinmyhands]

wtf?

[stardustinmyhands]

12/10/24

So my doctor gave me difulican and my girly itching has stopped. So do I have lichen sclerosus? I haven’t gotten results back from my doctor. So I honestly don’t know. Either way I’m glad the itching has stopped and the bleeding from tearing. I still have the steroid ointment though.

I also got put on metformin and I’m trying to eat less sugar stuff. But I just can’t give up the bread. I will be honest.

Today I have a spasm in my left ribs. It’s not fun.

Late last week me and my girlfriend had a massive fight (we are ok now). I broke my favorite Lady Gaga necklace. I had two walk outs (I’m a self checkout out cashier).

I was also denied disability for the fourth time in a row.

That’s been my past six days.

Saturday to get me out of the house and get my mind of things my boyfriend took me to zoo lights. Then we went to IHOP for food.

I had been up 22 hrs that day. I got up at 2:30. Went to work from 6am to 2pm. Came home did some dishes and laundry. Took a shower then went out with my boyfriend.

After IHOP we went right back to his place and feel asleep. I spent all day Sunday at his place.

Yesterday I went to see my immunologist. I show up early cause I took an insurance taxi and they tell me they didn’t receive my referral. If they don’t get it before the appointment I will have to cancel. This is for my ivig. So I frantically called my dr, they gave me a 15 min grace period. They got it like 2 minutes before the 15 mins wad over. So I had my appointment. He also ordered me medicine for my svn machine cause I needed it a few months ago after I was exposed to smoke. And they ordered me a nasal spray for my sneezing.

My nausea is still around, but not so bad on my reglan. I have plenty of 8 mg zofran, for now.

The dragon at the top is from zoo lights.

[stardustinmyhands]

Friendly reminder that chronic and invisible illnesses are not magically cured by exercise, changing your diet, “clean living” or suddenly becoming vegetarian or vegan.

Believe it or not, but most disabled people cannot afford to overhaul their diet and swap to completely organic, vegan foods. Some disabled people are in too much pain or too exhausted to exercise. What may work for you may not work for others.

Chronic illnesses are lifelong. And in many cases, terminal. They cannot be cured, they can only be suppressed. So don’t berate and dictate to disabled and chronically ill people about how they should go about "curing" themselves.

[stardustinmyhands]

12/5/24

Some days I don’t admit how sick I am.

Other days it’s so obvious.

I’m at IVIG infusion today, watching Lady Gaga and doing a word search. Snacking on bbq chips.

I see my immunologist on Monday. He will order my infusions for another year. I’m gonna ask for Zofran via my port, I get prednisone via my port which I’m glad for. It calms my tummy, even more today.

I took a shower and put my steroid cream yesterday. That cream is amazing, stops my girly itching and pain in its tracks.

I’m wearing a long sleeve today to hide the cut I gave myself.

Some days at infusion I wish I was just home in my bed.

[stardustinmyhands]

I understand the CEO of UnitedHealth was shot but has he considered losing weight? Because that would help resolve those symptoms.

[stardustinmyhands]

12/1/24

I don’t feel good today, physically or emotionally

My anxiety is not helping.

I’m in a lot of pain. I’m nervous about something, but I hope it’s just my anxiety taking over. And I hope my anxiety is wrong, I’m just over reacting.

I’m having nausea today, but I don’t know what’s causing that. It could be the metformin I just started back on. (He started me on 500 mg twice a day).

I’m in bad pain right now. I took an atarax, tramadol, and a gabapentin (and my girlfriend just gave me a magnesium pill). I also used 3% nsaid gel on my hip and knees.

My boyfriend got sick, and I wasn’t able to see him. I’m really disappointed about that. I haven’t seen (well I saw him on thanksgiving, but we didn’t get alone time, so that really didn’t count to me) him in now what will be 3 weeks cause we worked like 14 days straight. Me and my girlfriend didn’t get sick with whatever he’s sick with. I’m thankful for that.

Tomorrow I see my pain doctor. On the 9th I see my immunologist to order more IVIG infusions for the year. It seems I only feel ok the days following my infusions. I’m not ready to go to once a week yet, that would mean I’m getting worse. I don’t want to face that yet.

I was feeling so much itching from my lichen disorder, luckily my ob gave me strong steroid ointment. It works very well. I was itchy and slightly bleeding. This disorder sucks, it’s uncomfortable and it itches. My blood sugar is bad right now. That can make it worse. So once I work on getting my sugar down that will help hopefully.

I just don’t feel good today, and anxiety is taking over my head. I’m not sick but I don’t feel good. I will put it that way.

I’m watching the Lady Gaga Chromatica Ball, or her on YouTube. She’s one of my coping mechanisms. I love Lady Gaga, and could watch her all day, everyday.

I want my anxiety to go away, but I know I have no control over what I want to happen to make it better. (I’m not gonna talk about what’s giving me anxiety, I’m just not ready to yet).

[stardustinmyhands]

I have to admit I’m still coming to terms with my new diagnosis. I thought it would be an infection, like a yeast infection. But knowing I may have to deal with this itching for life is frustrating. My doctor prescribed me a very strong steroid ointment.

I also got put back on metformin, cause I at to much junk. So I’m diabetic again. 😔

I don’t feel good about it, but I can make it better.

I’m still waiting for my lab results from the OBGYN to come back.