Chronically Skully

[chronicallyskully]

So I'm fuming.

I had been switched by my insurance company from Remicade to Avsola (Avsola was cheaper and I had no problem trying it out unless it made me feel bad, only then did the insurance company say it's ok to change back, fine, ok.)

So I got my first Avsola infusion 4 months ago (I think that's around April if I counted right) and it did ok during the infusion, but I went 2 extra weeks without an infusion when I'm supposed to get one every 4 weeks, so I felt crappy for a little while.

About two weeks after my first Avsola infusion, my mom and I took my 4 year old niece out to a petting zoo for some quality time. We were outside around 30-40 minutes. And during our walk through I started itching on my face and arms. Mom and I figured it was because the animals licked me and maybe I was having a reaction to it. I mean I got red, rashy places, it itched for hours and got worse the more I was in the sun. I scratched one place above my eye open. I took some benadryl, stayed out of the sun, got a shower and went to bed early. It took about a week for all the redness to fully go away.

After my second one I went outside and waited about 10 minutes in the sun while my mom took pictures of a church since she was making the directory for it.

I got in the car after only 10 minutes in the sun and that big rashy red splotchy itchy mess came back, again for hours. Benadryl, shade and bed early again. Another week to calm it down.

So mom and I decided I should stay in the house or shade as much as possible, order strong sunscreen and wear pants and my Jean jacket when I went outside. I did that and it seemed to take care of it, I could tell when the sunscreen was wearing off because I would start getting red and itchy.

I went to see the dermatologist about it and showed pictures and explained how it happened and that all of this started after starting the Avsola infusions (all my other medications were older had been taking them over a year, this was the only new medication and all this happened before I started trying cbd oil). He immediately tested me for Lupus and Drug-Induced Lupus (I also have joint pain, headaches and extreme fatigue that he had factored into his possible diagnosis).

A week later the test results came back negative for Lupus, but positive for drug-induced Lupus. So my dermatologist sent the notes from the visit AND the notes from the testing that showed I had drug-induced Lupus and that he believes the Avsola is responsible and thinks it should be changed back right away.

I get a message from my GI (the one who prescribed the Remicade) and said that the PA (she works under my original GI and helps handle my visits and medications) doesn't want believe that the Avsola is responsible for my dermatology issues.

THE AVSOLA WEBSITE SAYS STOP TREATMENT OF AVSOLA IF SYMPTOMS OF A LUPUS-LIKE SYNDROME DEVELOP.

I am absolutely mind blown that I have to fight my doctors to get them to understand it's making me feel sicker.

I don't know if I should laugh or cry...

(I know some people leave comments in my posts and I want to communicate so bad, but this blog has had some connectivity problems with post chatting and I absolutely don't know how to fix it. I'm more than happy to try the private chat stuff if you have any suggestions or helpful tips to get through this. I'm so exhausted, I'm just so tired of having to fight for myself y'know?)

I can post pictures if people are curious what the rash looks like

[chronicallyskully]

Does anyone else's doctor want to try to control your chronic pain with lyrica and effexor and think that's gonna do ya. Pop a tylenol when you feel really bad.

Like...when do I feel really good? I need some meds that actually take some pain away and I cant have advil because of crohns so...?

[chronicallyskully]

I have been sitting on the couch, after a bath, for 20 minutes. I just have to pick up 2 small containers and a pair of headphones and take them to my room. I can't though. My fibromyalgia has flared up in the bath and I've just been sitting here, trying to mentally push away the pain and gather the general energy it takes to even stand up and grab these things. They are not big and not heavy, but when you feel like your body a drill going through it, it does end up feeling like it weighs a ton.

Not to mention my thighs themselves lose the energy to walk and threaten to throw me down everytime I move. No one knows why and no one will tell me what I should be doing to figure out what's wrong, so there is that...

[chronicallyskully]

Has anyone felt really left out of everything because no one wants the responsibility of having you around?

[chronicallyskully]

When you are having a bad pain day and you are literally crying because your mashed potatoes from a TV dinner is lumpy, like it's the last straw. It's only 12 pm...

[chronicallyskully]

It's been a while since I updated with info, I've been a little busy and just didn't have the energy to be honest.

I just wanted to let all of Tumblr know that my mother may not be the dream mother people want a mother to be, but I would NEVER trade her for my father or anyone else. No one has advocated for me harder than my mother and has defended me when people talk behind my back about how I'm lazy or faking. She tells them exactly how it is, the sleepless nights, the crying and the constant pain. I'm so glad she is my mother and cares enough about me to do what she does.

[duskyanimations]

Dark Crystal is soo good, even tho it scared the shit out of me as a kid, and the new Netflix series is fantastic I live for this kind of stuff lol Here are a couple of OCs I’ve made, they have backstories and all that jazz so ya idk you might see more of them in the near future c:

[theworldofthedarkcrystal]

me pausing The Dark Crystal: Age of Resistance (2019)

[chronicallyskully]

My doctor has increased my gabapentin and told me that I shouldn't take my pain meds very rarely if at all. I don't get to have the good stuff like advil or aleve to fall back on. I only have tylenol and the best that has ever done is pull back a headache. My big girl pain meds I had done my best to keep it to once a day. Sometimes I didn't take it all day, sometimes I needed two, but I knew I had something that can give me some kind of relief. Now I just sit in bed and cry because of the pain while I wait for the higher dose of gabapentin to do its work. Between trying to keep up with doctors and my diabetes and crohns and trying to get my lawyer to contact me and get the hospital to call me for my infusion appointments...I just feel like I'm going crazy. I'm crying way too often to feel good and my poor mom doesn't know what to do to make me feel better.

STILL trying to get the rheumatologist to make an appointment with me that I have had a referral for since MARCH. It's too much stuff going on at once and I'm hoping i can just keep it together until things start calming down and coming into place.

[chronicallyskully]

Onto my next project while we wait to get some more yarn for my other project. Doing my best to learn...the..brick stitch? I think that's what they called it. My grandfather gets cold easy and my mom thought it would be nice to make him a blanket and by any luck I will have it done by oh...Christmas. This one takes a lot more concentration than the cats blanket.

I like it though. I can't express enough how good a distraction this is. Under my heated blanket with some lemon water and watching Game Grumps/Alaskan Bush People to have something fun to listen to while you work. Really great on keeping my mood tolerable.

[chronicallyskully]

I got my sensor training today and I'm finally hooked up to everything I need to get better. Now for infusions and hopefully be better in no time 😊

[chronicallyskully]

Infusions?

To anyone who has had infusions for their Crohns Disease, has it helped? No one I know has had them that i know of and my GI thinks it's going to make a big difference. She wants to go to infusions since my body seems to be fighting the humira injections. My doctor says this will be a lot more effective, but if anyone has an experience with this I would love to know how its helped.

[chronicallyskully]

I don't know if I am the only one who feels like this, but when I'm asking for refills on my prescription pain meds I am terrified they will tell me I can't have them anymore. Until my pain is managed or they find out why I'm in the pain I am in, the little bit of relief the meds give me is all I have.

I mean, look at all the people in the world who need pain meds and can't get them because of insurance or allergies (I'm pretty sure there are acetaminophen allergies out there or at least sensitivies). There are doctors out there who WILL NOT prescribe them because they either are not allowed or they don't because they don't believe you need them.

Plus the fact that your pcp's office is understaffed and your doctor is spread thin and sometimes is out of the office for days at a time and when you message his nurse for a refill you have to wait a few days and have one pill left to hold you.

Everyone also is so afraid of you becoming a feral pill addict. It doesn't happen to everyone and just because I take no more than 2 pills a day does not mean I'm addicted. Trying to convince family otherwise is like wrestling with wolves. Exhausting and hard to win.

[chronicallyskully]

I've been getting worse in my pain. I'm still not sure how or what is supposed to help. I'm on 3 different meds that's supposed to help, but they aren't doing much. Anyway, to keep me from focusing on my pain I have been working on my knitting and crocheting. I've been trying to work on a little bit of a bigger project, a baby blanket. Well...cat blanket should be more accurate it's for my fur children to sleep with. I'm practicing for making an actual baby blanket for my beautiful nieces. ❤

I'm telling you having something you can lay down and work on to make yourself feel productive, even if you can't get out of the bed that day because of body pain, really helps. You have to work your hand muscles up to doing it for longer periods of time, but it has really kept me from putting more focus on my pain.

If you don't have carpal tunnel or something that bothers your hands too bad (I've been there before and I reccomend compression gloves. I used to have bad joint pain in my hands before I lost a lot of weight and they helped my drawing) I suggest doing something crafty. Anything from drawing, to writing, keeping a journal or getting into planners (you can also craft stuff for your planner to keep stuff organized. I'm thinking of buying a nice one and doing some crafty deco).

I personally do a lot of drawing, writing cards and gaming. I've messed around with other stuff (usually stuff that takes me getting out of bed and that stuff I do on my good days. Soap making, polymer clay charms, watercolor bookmarks) and crocheting and knitting have been the best two things for me. I love love LOVE drawing, but my body usually gets sore and achy from leaning down.

[chronicallyskully]

Skully's chronic pain fact #01

You do not have to do ANY activity to have the absolute life energy drained from your body. Heck, you can be exhausted just waking up. Go back to sleep, store your spoons and try again later. (If you can)

[chronicallyskully]

Why is it so hard?

Why is it so hard to convince someone you are in legit pain or sick or both? Just because I'm doing alright one day DOES NOT mean I'm going to be ok the next or even in the next few minutes!

Why is it so hard for doctors to listen to their patients and go through the testing? JUST IN CASE! Example, when I was 17 I ended up seriously ill with some unknown problem (something similar to pneumonia, but not exactly, they never figured it out) and was in the hospital for 4 days. Two weeks later I was still weak and losing breath. Went back to the dr. They said "we are going to test for mono, I dont think she has it, but it's worth a shot." Comes back 20 minutes later, "well, turns out she has mono"

I know what my body is telling me and it should be obvious by the way you are digging into my body and I'm yelling in pain in reaction to it, that im not faking, these tears are real and you need to get into my head a little of you really want to help me.

[chronicallyskully]

I’ve realized that having chronic pain does not go well with a period. I started going on the pill again since I haven’t taken any antibiotics for a while. I either didn’t start taking the pill soon enough or starting the pill triggered a friggin period. Second once this month, give me a friggin break! My period flares up all the pain in my body, plus giving me constant headaches and mood swings my anxiety meds cant keep in check. I can barely walk I’m in so much pain. I’m going to start keeping a chronic pain period package under my sink so I have all the things I need when I start. 

Also, if someone in my family tells me to “use a heating pad” to take care of my cramps I’m ripping their heads off. I tell them every time that heat makes it WORSE! It’s like finding a feral cat in the street and going “Hey, what would happen if we shot it with a super soaker” and said cat starts chasing that person. 

I neep a nap...