You can't feel "that" bad

I have so many thoughts and constantly wondering how to put into words what those are without writing a novel. So many people misuse the medical system that those of us who truly do need help we are made to feel as though what our complaints are cannot be "that bad". Have you felt what I do?

Can you do what I can and cannot? Does your body choose for you what you can do for the day?

I replay and second guess any and all medical issues and feeling that I have, "Am I really not in the pain that I feel? Do people really make up these type of symptoms? How come they can fake them so well they get the treatment I need but yet I cannot get that treatment because it's not real? Or not bad enough?

I have been referred to a colon/rectal surgeon (awesome) for a consult for a complete Colectomy (where they remove the entire large colon and intestine). I did my research on the surgeon I was referred to which she has great reviews and many 5 stars which is a win in my books so why not go see her with my hopes up high? I am finally meeting someone who seems to deal with a lot of people who have some (if not many) of the same issues I do, I even wrote down questions, which is something I rarely do.

My appointment was at 11:30, I make sure I have everything I need including all the things she's requested from my doctors along with my "symptom" paper.. I always hate feeling those out. As I walk into the hospital I am already prepared to not go back until at least 30 minutes after my scheduled appointment, but that was not the case this day, I actually went back right at 11:30!! Sweet that means I'll be done quick and then can go about my day. As I was walking with the MA she looks at me and says, "I didn't see in your chart that you were expecting, congratulations", dumbfounded and seriously pissed I shot back with "um. not pregnant and now you can visibly see why I am here, if you actually read my file you would see that I am unable to bare children" I normally do not mind people assuming I am pregnant, however, those in the medical field should know better. The MA didn't really know what to say at this point, and why would she? She just told a pt congrats on my big belly full of nothing but inflammation and pain. As she did my vitals while trying to idly chit chat she get's to my pulse and says, "That's a bit high, are you okay?" HuH?? Where did they find this girl?? NO I AM NOT OKAY THAT'S WHY I AM HERE!! She finished her basic questions then informed me my doctor would be in soon.. 30 minutes later she showed her face. I am not happy nor friendly at this point. Introductions were said and she asks, "So what brings you hear, I read some of your chart but want to hear from you why you think you are here." Well doc (insert Jim Carrey's voice), I look as though I am 5 months pregnant and my body is not moving anything as it should. I cannot eat like I want, I am always hungry, I hurt, I throw up once a day depending on what I eat, I feel like a rock is in my stomach, I cannot drink thick fluids, I am extremely limited in daily activates, I still work and even that is a chore, I feel like everything I take in just wants to come right back out, my heart is in constant panic mode and my mind is working in double time with no end coming soon.. (now, Let's say it again in instant replay because you know that's exactly what is going to happen)

 

She responds with; let's look at your tests together and I will tell you why I cannot help you (yes at this point I started crying) she pulls up my CT and it clearly shows my guts do nothing as they should. It shows my very tiny stomach and all of my bi-passes. The contrast goes threw very quickly only stalling at certain places. You can see my diseases in full swing and my body doing exactly nothing. She said, "I cannot help you, your entire GI tract has stopped and therefore by me taking out your large colon and intestine it would not fix the problem only mask some of the swelling. I've done my research I know their are things she can do.. She then asks me to lay down and she wants to see my belly.. I pull my shirt up her words "Wow you are very distended and very firm" DUH!! Have you met my doctor captain obvious?! After her exam I am told, "I need to call a couple people from your team and then I will be right back.. So there I am again, alone left pissed up and upset and just crying.. Why can't I be helped? Why are so many people afraid to take me on? I am complex and complicated but I know someone somewhere I can be helped..

 

She knocks as I clean up my face, she comes in and says, "I am waiting to be called back I will call you today. Do you understand why I do not believe I can help you?" Nope I don't but who cares.. As I walk out my mind racing, tears trying hard to run down my face, the looks of concern from people I was with. A text to Bryan "Please do not call me, we will talk later, I am struggling to keep this poker face stone cold" The people who were with me knew to not ask, to just let me put my mind in a place it goes to find my own cure and my own happy place. Dr. G called me at 2:45 left a message saying, "I have talked to your team and we have come up with some options, please give me a call back so we can talk" I called her at 2:55.. NOTHING from her, I have called her every day since, her MA told me that she knows she's gotten the message because she talked to her about me. She also told me that Dr. G didn't make any notes so she cant even read to me what her plan is.. WTH?!? Doctors whine and complain about malpractice and patients with no patience well, maybe for one be in our shoes! I am so tired of being told I should go to the er, I'm un-helpable, I am complicated, reduce your stress, take your meds, keep calling until she finally calls you back or answers..

 

Baffled yet again, I am back at ground zero with nowhere to turn, no one to trust, no help just left with me managing myself. I have met someone who is helping me, she gives me so much advice and we compare things we've gone through, the things she has been through and surgeries she's had and doctors she has, as well as how to find medical help for the bills I continuously receive. She understands because she is dealing with some of the exact same things I am. I lost an amazing friend to Crohn's disease 5 years ago in September, her and I had a lot of talks and she understood.. You want people to understand but then never wish the pain upon them (except the doctors you want them to feel it and maybe then they'll help). You never turn to the internet, you'll be told you have cancer or are going to die.. It's almost comical what you hear when you're the "sick person". I have to work while being sick, that is a full time job all in itself. I still have 4 kids I need to take care of as well. I would never ask my kids to do something I myself am not willing to do. I push my body's limit to the extreme at times. Their is no way on this earth to NOT stress.. I try to not think of the pain, when I hurt to that level of "ER or home" I call my mom or my sister.. They know I'm to upset and hurt to much to talk so they talk and I can focus on them and their words instead of the horrible pain I am in and all I am screaming is we can make it home, just breath, its just one bad day.. One bad day that happens every single day.. It's like ground hog day (the movie) I wake up at the same time, with the same feelings and it never changes.. What changes is the things that happen during the day.. triggers.. pain.. issues.. is something new going to set me off this time.. I know many times I should go to the ER but why? I have meds at home, every doctor I run into tells me they can do nothing..

 

This roller coaster I am on is seriously annoying and I wish I could get off this messed up ride and enjoy life and be able to participate like I used to.. Sadly that will never happen. I do what I can then my body limits me and I pay for being with my children.. Its a win and a loss at the same time.. Deep breathing and shaking my head is very normal at this point. I wish this was an update instead of a rant, it seems all doctors leave me is reasons to rant and not reasons to celebrate.