What are your conditions?
- endometriosis, fibromyalgia, probable crohns w/ excruciating joint pain.
What is the longest you have gone without showering?
- 4 days
When was your last ‘good’ day?
- don’t remember honestly
Worst day in your ‘sick’ life?
-any day when my pain is off the charts and I’m alone
Who is your favorite doctor/ specalist and why?
- GI doctor, because he believes In me.
How many miles to your nearest hospital?
- 5 miles
- 7 days
-24 hour observation
Best thing about being chronically ill?
Wost thing about being chronically ill?
-dealing with it alone/never getting better
Number of diagnosis?
- two firm diagnosis’
How many medications a day?
-7 or 8
Worst hospital experience?
This one ER is really shitty, such a clusterfuck.
Best hospital experience?
- my night nurse knew I wanted a bagel after surgery, and everything was closed, so when she got off in the morning she went and bought. Me and my mom bagels.
How supportive are your family and friends?
-The friends I have left are usually supportive
Are you still able to work/ go to school?
- I go to school
How long have you been ill?
- almost 3 years
Biggest fear relating to health?
- being called crazy/no one believing me.
Are you undiagnosed at all?
- yes. GI pain, high sed rate, joint pain, partial dislocations
Worst doctor you have seen and why?
- a rheumatologist who, after I had gained the weight from lupron depo, he told me I was fat and lazy and told me that I must be trying to kill myself
My ankle is giving out on me this morning.
And i’m still having palpitations
and my ribs are killing me. Bleh.
I have really bad heart palpitations :(
Leave it to me to be in so much pain that i mess up the dates and have to do my prep AGAIN tomorrow. FUCK.
Tomorrow is my pill camera capsule test. Time for uh, test prep. Gatorade plus a whole bottle of miralax. No explanation needed. 😔 Kill me.
The longer people leave me to deal with this on my own, friends especially, the more withdrawn from you i will become. If you have more important things in your life, believe me i know it. See the thing with me is, what little friends i have left, they’re very important, they save me from myself, my thoughts most days, but not every day. They distract me, but only when they want to. I have bad days. I have bad moods. I’m sick, but i’m human. You all go day in, day out, trying to be happy and successful and find love, and i spend every day trying to survive. Do you get it? It’s not easy. I try to laugh as much as i can every day, but that still doesn’t make the pain magically go away. So i’m sorry if some day’s i’m not happy, i’m sorry if i push you away. But damn, you’re suppose to push back. I need that. I need you. But that’s the difference between us. None of you need me.
I feel like i’ve been hit by a truck.
I feel so broken.
Everything aches and throbs and
no one can see.
& no one is here caring.
My abdominal pain is so bad tonight. So So bad.
Who wants to come take care of me?
So sick of doing this alone ffs.
So i went to my GI doctor earlier today because things have just not been good, i was suppost to see him in july but i decided not to wait because last time he was upset that i let myself suffer for so long. Plus i got some bloodwork back that said i have a high SED rate, and with all my joint pain and me having to get a cane and all my abdominal pain and stuff, he thinks i may have crohns. And it all fits. I had a negative colonoscopy but that was almost 2 years ago and everything has gotten so much worse since then. My most recent endoscopy showed a lot of inflammation, even though it was negative about six months back. So he’s going to do a barium followthrough and a pill camera thing. Grrr. More tests, but hell i’ll do anything to find some answers.
I’ve been frustrated, to say the least, the last few days. Instead of staying frustrated, i took it out on my punching bag for an hour in 100 degree heat. I’m quite glad that my gloves are protective, because if they werent i surely would have broken a finger or a wrist. I’m real sore now, but hey its better than being frustrated, and in pain, Eh?
I made an appointment to see my gastro doctor tomorrow, my abdominal pain is so bad and i keep getting waves and waves of nausea. It could still be from withdrawing from gabapentin but i don’t know. Bleh.
I’m going to watch some castle and try to not think too much the rest of the night. Hopefully the pain lets me sleep soon. :s
God i cannot understand how i am so fucking insignificant to everyone in my damn life. Especially the few friends i actually have. One hasn’t talked to me in god almost a month now? Ones pregnant and being very self centered and acting like being pregnant is the most horrible thing/sickness in the world and everyone should feel sorry she has morning sickness, and the rest are too damn busy with their jobs or their significant others/on again off agains/fuck buddies whatever. I must be a fucking horrible human being and they must all feel fucking sorry for me. Pity friends i guess. I swear. I thought i was a pretty cool person, but i must talk about my pain too much or something? They don’t understand, that they are one of my only escapes, distracting me is one of the only ways to get my mind off the pain, and when they are all damn too busy to talk to me for days, weeks, months? its torture. My pain tortures me. My mind tortures me. There aren’t many ways to escape. Im so sick of feeling trapped. And fucking alone. And now i just look like a pathetic loser with no friends. So….awesome.
I think one of the hardest things about being chronically ill is the emotional factor. Normal people my age usually have body image issues, but when you throw in your body trying to destroy itself, it’s hard to be positive about your body at all. Along the lines of the emotional factor, is the friendship factor. Sadly, we don’t get to keep a lot of “friends”, because they get tired of hearing the same thing over and over, cancelling plans, and us not being coherent enough to have a good conversation. So i don’t know, maybe it’s just me, but i try like hell to hold on to the people i call friends. But even those people have actual lives, actual friends, actual responsibilities. So when none of your few friends are there to distract you, your mind wanders, its entrapped in constant pain and somewhere along the way you feel like you did something to deserve it, and you beat yourself up because your body wont cooperate, you become your own worst enemy. Then you push the few people away that care and then your running(metaphorically of course, since we can barely walk) in a vicious circle. No able bodied person can get it, understand it, fathom it. Not until their sitting in their dark room crying and praying for the pain to stop, even if it’s just long enough for us to catch our breath. We just want a break, mentally or physically, i’ll take either. Because chronic illness/pain coupled with negative emotions is damaging. I feel so damn much that i don’t feel anymore.
I’m eating yogurt for the first time in a year and a half. Hopefully it doesnt make me sick as hell again.
My everything fucking hurts