What’s Has Been Happening Lately

Why I Haven’t Posted Lately

I know I really haven’t written anything in a few weeks but I just have been doing worse with my fatigue. At my apartment at school I can barely take care of myself at this point and it feels like it keeps getting harder and harder to do stuff. I can probably do about one big thing a day. A big thing would be like going to Target, or going to Costco or lunch….obviously not big for the normal human being.

IVIG Round #2

I have been home for about two weeks because I just received my 2nd month dose of IVIG. I am thinking about writing an IVIG explanation post so that people can understand how brutal the treatment can be, and the horrible side effects it comes with. Luckily this time I just felt like death the day after the last dose and then just had headaches for a couple of days. My doctor made me stay an extra week because he was worried I was going to have the horrible migraine vomiting episode I did last month.

I honestly haven’t seen much of a difference with IVIG so far. I really wish I did and I was really banking on getting into remission with IVIG. I know I have 2 more trial months of it and then we will reevaluate. My doctor was even shocked I didn’t get a boost from it, he really thought it was going to work wonders for me. In a week and a half, I get to go see the Crohn’s doctor and both my other doctors really want to know what he has to say about my case. I’m thinking he may change my diagnosis from Autoimmune Enteropathy to Crohn’s but I guess we will see.

Weight Gain Update

Okay, so I finally kept my food diary good enough to show my doctor that there is a problem with my weight. I’ve gained 60 lbs. in the past year-year and a half and I am very confused. This has really really been bothering me and I have been pleading with my doctor to do something about it. Well, in his words “Something is really really wrong, you shouldn’t be gaining 60 lbs. with what you’re eating.” Basically I barely make myself food besides cereal and pea milk and veggie noodles in the freezer because like I said I am on a limited functioning level. I literally eat the SAME thing every freaking day. Sure I am hungry but it’s not like I am out there eating cheeseburgers and fries everyday. He’s said that the weight gain is part of my mysterious disease and maybe my body is making extra steroids. I am hoping it will stop at some point because I am the heaviest I’ve ever been and it scares me. It’s honestly the last thing I should be worrying about but I am really hard on myself and I at least want to look good even if I can’t feel good. I am going to probably start going to a nutritionist when I get a car (I am currently car-less, but I have a new one coming in the next few weeks!). I’ll also keep working out with my trainer and try to get back on track after the holidays. I will literally be traveling back and forth the next few weeks so I really won’t be on routine for a while.

Thanks for keeping up with my hectic non-hectic life!!!!

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5 thoughts on “What’s Has Been Happening Lately

  1. Hi Sydney, so sorry you haven’t been doing well, really hope you turn a corner soon, it must be so difficult, but just keep going. I’m sure the weight issue will resolve itself, maybe confuse you’re body by changing what you eat??? I’m no expert but it worked for me. You seem like a fighter to me, keeping my fingers crossed for you feeling better very soon xx

    1. Hi!! Thanks so much. No unfortunately no matter what I eat it’s not changing. My doctor said it’s my illness and he’s not exactly sure why it’s happening. I appreciate the advice though!

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