chronicchristianity:

chronic illness makes bedtime infinitely more complicated.

chronicchristianity:

chronic illness makes bedtime infinitely more complicated.

chroniccisphobia:

If someone doesn’t “seem” disabled to you, maybe it’s because they’ve been forced to develop a huge and complex system of coping mechanisms in order to try and survive in an ableist world. It’s probably that.

spooniestrong:


thefrogman:

More anonymous doctors. 
I’ve been sick for over ten years. Do you think I haven’t tried literally everything to get better? I have electrocuted my brain. I have taken pills with horrific side effects. I have signed up for every experimental procedure I could find. They put magnets on my head. MAGNETS! I have tried “alternative” medicine. I sold my car and pretty much all my possessions to afford an osteopathic treatment guaranteed to make me better. I put myself in great medical debt for the slim chance that maybe something would help. I ate nothing but lettuce, rice cakes, and bland organic chicken for a year. I drank nothing but filtered water.
None of it helped.
Healthy people need to realize that sometimes people are sick and there is nothing they can do about it. Not everything can be fixed by avoiding processed foods and diet soda. And not every illness can be avoided if you treat your body like a temple. It is so frustrating that some healthy people think, “Well, if I had CFS I could do this and this and this and it wouldn’t be a problem.” Have you never experienced anything that is out of your control? 
You have no idea what I’ve been through. You haven’t taken the scariest sleep medication there is and had a panic attack because it made you feel like you were dying. You haven’t had to put a piece of rubber in your mouth to keep you from biting off your tongue while they force you to have convulsions with electricity. You haven’t spent everything you had for supplements, injections, and nasty powdered “mitochondria-boosting” drinks and had your hopes dashed because it did absolutely nothing. 
If I want to eat an occasional hamburger… if I want to have a diet soda from time to time, I’m going to have one. And it isn’t going to make me any better or worse. It’s just going to make me go “yum, that is tasty.” 
A few other points…
Antibiotics saved my life. I had an infection and went into septic shock. A hundred years ago I would be dead. 
You do just “catch” things. All the time. And sometimes you are born with things.  
Soda isn’t deadly. It may be a variable or contributing factor to health problems for some people, but calling it deadly is ridiculous. 
Please stop sending me diets. I know about all the diets.
I have by no means given up on getting better. I pay close attention to the research and try anything I think might help. 

I can’t say this enough: EVERYONE’S STRUGGLE IS DIFFERENT. What works for you, may not work for another. Diet changes may help some alleviate SOME symptoms, but it does not CURE the disease.

spooniestrong:

thefrogman:

More anonymous doctors. 

I’ve been sick for over ten years. Do you think I haven’t tried literally everything to get better? I have electrocuted my brain. I have taken pills with horrific side effects. I have signed up for every experimental procedure I could find. They put magnets on my head. MAGNETS! I have tried “alternative” medicine. I sold my car and pretty much all my possessions to afford an osteopathic treatment guaranteed to make me better. I put myself in great medical debt for the slim chance that maybe something would help. I ate nothing but lettuce, rice cakes, and bland organic chicken for a year. I drank nothing but filtered water.

None of it helped.

Healthy people need to realize that sometimes people are sick and there is nothing they can do about it. Not everything can be fixed by avoiding processed foods and diet soda. And not every illness can be avoided if you treat your body like a temple. It is so frustrating that some healthy people think, “Well, if I had CFS I could do this and this and this and it wouldn’t be a problem.” Have you never experienced anything that is out of your control? 

You have no idea what I’ve been through. You haven’t taken the scariest sleep medication there is and had a panic attack because it made you feel like you were dying. You haven’t had to put a piece of rubber in your mouth to keep you from biting off your tongue while they force you to have convulsions with electricity. You haven’t spent everything you had for supplements, injections, and nasty powdered “mitochondria-boosting” drinks and had your hopes dashed because it did absolutely nothing. 

If I want to eat an occasional hamburger… if I want to have a diet soda from time to time, I’m going to have one. And it isn’t going to make me any better or worse. It’s just going to make me go “yum, that is tasty.” 

A few other points…

  • Antibiotics saved my life. I had an infection and went into septic shock. A hundred years ago I would be dead. 
  • You do just “catch” things. All the time. And sometimes you are born with things.  
  • Soda isn’t deadly. It may be a variable or contributing factor to health problems for some people, but calling it deadly is ridiculous. 
  • Please stop sending me diets. I know about all the diets.
  • I have by no means given up on getting better. I pay close attention to the research and try anything I think might help. 

I can’t say this enough: EVERYONE’S STRUGGLE IS DIFFERENT. What works for you, may not work for another. Diet changes may help some alleviate SOME symptoms, but it does not CURE the disease.

How to Use as Much Toilet Paper as Possible

Warning: the following is nasty.

Have your period while not being able to use a pad or tampon.

Have a runny nose.

Do nose spray multiple times a day.

Have a chronic bladder infection.

Have massive amounts of diarrhea.

It also helps if you already have a pre-disposition for using too much that is so bad you have been made fun of for it by your family your entire life.

Oooooh and not only will I maybe lose a ton of weight but I should also see some reduction in the hyper-pigmentation due to my insulin resistance!

YAY

I’ve decided to stay at least mostly gluten free for a couple more moths to give metformin a while to make it kick in. But if I really want something I’m going to eat it, because it really doesn’t seem to be doing anything.

I took a two day break from rifampin in order to feel well enough to go to the doctor today, and I felt a lot better (for a little while) so I’ve got renewed hope that I’ll feel a lot better when I’m done with this treatment.

My new doctor is too cute. Doctors aren’t supposed to be that cute. Under. Any. Circumstances. But… I GOT METFORMIN so I’m currently preparing to lose all this mold weight. Yay!

My new doctor is too cute. Doctors aren’t supposed to be that cute. Under. Any. Circumstances. But… I GOT METFORMIN so I’m currently preparing to lose all this mold weight. Yay!

Since I’ve started this round of rifampin I’ve gotten like six new places with rash on them fun.

I love my doctors, they have saved my life and figured a lot out but with some things they are way too far the other direction.

Sorry for being a downer. I try to keep this blog accurate to what this is actually like for me, and sadly today that is like this. 

Maybe I’ll just listen to myself. I’ll stay gf for at least one more week go to this new doctor see if I’ll be put on metformin or something again.