Dimensional Skully

I'm always telling my mom that my pain changes and I can't get her to understand why. For a while, it made me feel like I was making it up. Mom has noticed that every year, I have a different pain issue. Last year, it was nerve pain, and while I still have a lot of issues with nerve pain, it's managed better with meds and topical ointments. This year is the year for unknown joint pain. No one can figure out why my joints hurt so badly, and my blood work shows no signs of rheumatoid arthritis. My rheumatologist has said if it's not rheumatoid arthritis then she can't help me. I think I might have a hyper mobility issue, but she cant/wont do anything to help me find out about it. I've just been trying to keep it calm with pain foams and ointments, but I like to draw and read, and it's so hard to hold a pencil sometimes, not to mention holding a physical book.

Don't get me wrong, I love the girls, but I want to talk about more than who fell and broke an arm and the next colonoscopy. Plus the fact the only things we read is historical fiction. It's a miracle I got them to try a twisted tales book and then I have book I started called The Memory Collectors and they seemed interested in that. Only problem is I can't find it ANYWHERE.

As well as others in my family because they see me not using my cane all the time. The thing is I have so much joint pain anymore it hurts to hold onto the cane to help me walk, so if I'm home or in someone else's house where there is ample places to sit down if needed, I'm not using it. It upsets my great aunt because she has seen me cry in pain and she has been on the phone with mom while hearing me cry as my mom rubbed pain cream on my back.

Sometimes I imagine what people would say if they could physically see the issues. If they could see redness from the pain I feel inside, the could see the bone spurs stabbing and the degenerative disc disease. The havoc on my colon from crohns and the pain in my uterus from an unknown reason. The migraines I get and the burning nerve pain that spreads across my legs and back. Would they even apologize? Would they even feel bad? I can almost hear the condescending tone now.

I personally don't care what they think or say, I know what's wrong with me (chromic pain wise at least). I feel bad for the people on my side who want to defend me, but can't tell the others how it feels because they don't completely know. It sucks there are people out there so bent on making people with chronic pain feel so guilty about something we can't control, just because they don't believe in it. I had one family member hug me recently and they did it too rough and I hissed and said "gently please" and they responded "I barely touched you, I thought you were getting better?" "No, just management. This won't get better, ever" and it blew their minds that there isn't something that will help. Then their husband asked me "is it contagious?" Umm...no? Who makes these people? Those are the people who need to be followed and randomly punched through the day and as the pain subsides from that punch, BAM, ANOTHER ONE. ALL...DAY.

A couple things new. I was diagnosed with small fiber neuropathy in both legs. It's been inconclusive in my arms. Of course my neurologist said I could benefit from a certain infusion, but once I was diagnosed he said I shouldn't do it after all and that it's just pain management for the rest of my life. He has me on a kind of triptaline to help with the nerve pain, but it disappointed me to hear him have hope I can have help with this nerve pain and then rip the rug out from under me the next time I saw him.

My grandfather passed (I had moved in two years ago to help with his home dialysis and to help my grandmother with as much as I physically could) so my grandmother and I have been doing a couple things together that he wouldn't let her do while he was alive and it's so adorable to see her personality come back to life now that she is able to rest and enjoy her life. (She loves him and always will, but he was mean as a snake at the end and belittled and demeaned her until the end and really wore her down)

We have been watching WWE together, and she has been really getting back into it. Mom said when she used to watch it in the 80s, she would get excited and hit whoever was next to her when something exciting happened. She now wants to advocate for everyone fighting fair, it's adorable.

I finally got my insurance company to change me from Avsola to Remicade!! You guys have no idea how happy I am right now! I'm 10 seconds from tears and shaking. I've been fighting for over a year to get it changed back.

I don't know if anyone else takes Avsola for Crohn's Disease, but I found it gave me a lot of medical issues. While my Crohn's went into remission, I had things like skin problems, drug induced lupus, headaches, sun sensitivity, increased weakness and fatigue. Even with all those issues the insurance company would not switch back to Remicade.

When I started the Avsola I was the only one in the treatment center who had it and I believe only one other person takes it now. A couple treatments in I could tell the difference in effectiveness and how my body responds to it. While the blood work was fine, I knew something was off. I started getting whelps on my skin after being exposed to sunlight, rashes started popping up on my legs and migraines that was starting to convince me I would just rather have the Crohn's back. My Dermatologist tested me for all kinds of things and drug induced Lupus came back positive. It was low-tieter, but still positive. That was why I was feeling so bad even after the treatments. When I was taking Remicade I had boosted energy, my pain levels would go down for about a week and I wouldn't fatigue so fast. Once I was switched I wasn't the only person to notice I was not benefiting from the Avsola.

I finally saw my original GI that diagnosed me and she wrote a note along with my pain doctor, that it was making me feel so much worse and they needed to switch me back to Remicade.

I'm hoping whoever it goes to they enjoy it.

If I had the money I would absolutely get an exterminator here and spray for all the dumb bugs that find their way into the basement. (My grandad made this house, but things were different 52 years ago and half the doors don't fit right on the frame. Which gives me literal nightmares even before I moved in here)

I don't want to be complaining about living here when it helps my grandparents, but I'm too afraid to sleep now and now will have to go on a bug hunt when my mom goes to work. If I don't see it, it's still alive. I may have sprayed it with heavy duty bug spray, but my cat couldn't find it after it fell behind my bed.

#1. Pictures of baby who smile so big you see their gums. The less teeth the better. Baby gums make me smile so big.

#2. Animals who "speak" for attention. Something about them knowing that they need to make a little noise for some pets make me smile.

#3. When my nieces pick flowers for just me. No one else. They always look for a pretty flower to give me when I babysit and they want me to have the prettiest ones for me to put in my hair.

#4. Seeing my mom giddy over anything I'm interested in. It's hard to get her into something, so when I got her hooked on Supernatural and Arrow and Marvel movies, it made me feel good that she and I like some of the same things (she really is the opposite of me most of the time)

#5. When my grandmother comes to the basement and my cat runs over to see her. Ronin loves his Nanner and she loves petting him. She is kind of scared of him because he is big, but she has been getting more and more comfortable petting him and it makes the both of them so happy to see each other.

I was not prepared for waking up every two hours in the night in pain and then when 6:30 am hits being in so much pain from unpacking and moving furniture I’m bawling (Which I really shouldn’t be doing, but we have no help getting this together).

My mother, who while has been great for getting me to the doctors and making sure I get the care I need, still doesn’t understand that chronic pain is chronic and it doesn’t go away after a couple hours of sleep. While yes, I did get some sleep, it does not make a dent in all the movement I’ve built up to. I’m shaking by the end of the day.

So I should mention (especially to the people who know me) I had to move to my grandparents basement with my mother, so my mother and I could help them with their housework and medical needs. They are both having surgeries soon and then they both are having mobility issues and memory issues. My grandfather is on home dialysis and my grandmother is having memory issues. So we are trying to make sure to get things set up so things are easier for them and this way if something happens we are already here to take care of it.