Would you participate in an IBD research study? This might be silly, but I’ve always felt like I’m not sick enough to participate. Even though I was in the hospital for about 5 days earlier this year. Since I do not have a severe case, I don’t want a scientist to waste time on little ole me . . . or maybe it’s fear realizing I have a DISEASE and doctors don’t know what the hell is going on?!?!? . . I think it’s the latter lol
If I was to participate in a study, there are two that I found of great interest, 23andme and Celest Study who reached out to me and I decided to share with you all. Both seem easy/convenient and looking for people with IBD. Has anyone ever tried one of the studies? More information on both below.
I love this 23andme video, a true look into the life of an IBDer.
Men and women age 18-75 years old who have moderately to severely active Crohn’s disease, and who have inadequately responded to or are intolerant to anti-TNF therapy, are invited to see if they may qualify for the Celest Study. The purpose of this medical research study is to evaluate the safety and effectiveness of an investigational oral medication. Each individual will be evaluated to determine his or her eligibility.The Celest Study is currently enrolling patients with moderately to severely active Crohn’s disease. Check out www.celeststudy.com/TummyWoes for more information.
Saw my primary physician (pp) yesterday and when I got on the scale I gasped. I am officially 20 pounds heavier than what I was a year ago . . . fascinating. . . crazy thing is that I can still fit my jeans, it’s a good thing they’re stretch jeans. It’s also nice that my big clothes fit again and a belt is no longer needed . . . sighs. In the past 2 weeks I have gained 6.5 pounds, crazy right?!? I have either been an eating machine or hold intense water weight. . . I’m sick of it. Would like to eat well and not be big as an elephant. However, with the colonoscopy next month, I’ll probably lose those 6.5 pounds, so that’s something to look forward to . . the little joys in my life!!
My hip and lower back are starting to ache again. I told my PP about it and stated it’s probably because I’m completely out of shape, but she took it a little too seriously and immediately gave me a referral for physical therapy. . . “bitch please!” was the look I gave her. How dumb is it to walk into physical therapy pain-free. The pain is not like the hip injury I had a year ago when it was painful to walk, It’s just aches here and there. When I got home I trashed the referral, because the one thing I’ve learned this year is that Health Care is a freaking business! Most of you are probably thinking, “Well duh!” lol but I have truly seen the game and tricks doctors play from my many doctor visits this year. It’s like going to a car dealership where there is a problem everywhere! I was actually at the dealership today and the one repair that I’ve putting off might have to be replaced sooner than later.
I was so proud of myself earlier today, finally paying of medical expenses and reducing my credit card debt, it was such a feeling of relief. I went to the car dealership this morning for regular maintenance and they tell me this needs to be done, blah blah . . . a total cost of $1400 . . . bitch please! I walked out only paying around $250 the bare minerals. But the repair that cost the most needs to be replaced like yesterday. It sucks my commute to work is horrid and I have to drive my car (which might not be the safest now). I plan to go to Jiffy Lube right after work tomorrow, so I will no longer be paranoid but unfortunately hike up the credit card debt again. My little Corolla just hit 90K and all hell is breaking loose. . . it sucks because this was supposed to be the year I would start saving for a new car. That all changed when I was diagnosed with IBD plus a hospital stay. I’m pretty sure I’ve paid at least $3K (thank god for health insurance) this year in medical expenses, but I can’t complain. It would’ve been a lot worst with multiple hospital stays and even surgery(s) . I guess this year has been easy as a crohnie . . .
So is this my life now? Always worrying about money which causes stress, which causes a flare up, which could lead to a hospital stay and expensive medical procedures? Is this the routine of my life? I just realized prior to Halloween, I don’t recall the last time i did something social, like a party or just being around a lot of people, it’s embarrassing to say in the last year of my 20’s . . . but this year has REALLY sucked! And now with my car woes. . . it just keeps pouring . . .
I’m really tired . . .