to the doctors who know it all and the patients who live it

After being admitted on Monday morning ive had the same issues i always have when im here. orders for things i dont need or use, medication mix ups, and the worst of the worst-bad allergy management. I was laying awake last night (half clawing my dressing off and half being super careful not to cause its the only one i have that i can semi tolerate) i started to think about why a certain person on my tx team isnt really doing much to help get me the relief that i need and i came up with this.

I like to use a comparison of students studying say, spanish, in high school or even college. the doctors and nurses are like those students. studying formal language and dos and donts of a culture they've never seen. they watch films of life in Spain that were made in 1992 with horrible patterned t-shirts and over excited kids giving thumbs up all the time. worksheets and text books tell them everything they need to know and that information is gold to them. then there's us, the patients. we're the students who take a summer abroad in Spain. we personally feel the weather, the energy of the country, the feel of local life. we pick up the day to day language and lingo and learn expressions. we live and breathe it and we place ourselves in the middle of it all and that type pf personal experience is more valuable than anything a classroom could ever teach.

tie this in to life with a chronic illness. my doctors have spent years and years studying the medical field and cystic fibrosis, they know a lot, I give them credit for that, but they've never been immersed in the day to day c.f. life. I'm the student abroad, I've lived this life since day 1 on this earth. I know the books and I know the definitions of my disease but most of my knowledge comes from experience. I know my body inside and out. I know what to expect from every medicine I take, which ones will give me what side effects and which ones I can't tolerate. I know when my body needs iv's and I know my allergies and I know what to do to fix them. I'm not a textbook I'm an individual with individual needs. all I need is an open mind to hear me out.

it's rare to find a doctor who also "studied abroad" and understands that people living with illness on a daily basis, not just c.f. but any chronic illness, probably knows just as much if not more than them about the disease in question. we know what we need. what our bodies need to get better. we know our highs and lows. 

i believe a big part of the issue is that doctors tend to get big heads. they have a professional degree so when someone comes walking in and telling them what needs to be done its almost a bit of an insult in way. theres a power struggle between the patients and the doctors over who is right and who is more qualified to make decisions and unfortunately the doctors win every time, because of said degrees. (which all spoonies should totally have cause were pretty damn qualified to know what is and isnt good for us haha)

my specific reason for this is due to over a year of pure frustration and pain from allergies to both adhesives and cleaning agents. by the end of any 2 week course of antibiotics my chest is red. covered in blisters and bleeding, looking almost like the skin of a new burn victim. the allergic reactions i get are slowly getting more intense the more i need ivs. over the course of 1 year we've established that a dose of benedryl doesn't cut it. my skin falls off to the point that I'm left with scars. my arms and chest covered in little dots from where my skin has burned away under the dressing meant to protect me. hydroxyzine helps but still my chest is still torn up. iv benedryl is the only time I've felt relief from the constant itching and burning and it's frustrating that my nurse practitioner refuses it to me every time, because she is the student in class. her textbook tells her that it's a don't. however the one experiencing this annoyance first hand is in a constant state of discomfort. i can understand that her books tell her it has addictive properties, and it makes sense to be cautious. i have a fear of addiction since ive seen how it ruins lives and the lives of loved ones around you through first hand experience. i am slightly confused why with any pain they feed me morphine and norco like its water yet this one is so far out of reach. (id take pain over itch any day, pain i can handle. a persistant throb is more tolerable than intense buringin that keeps me awake till all hours.)

I know many of my spoonie family has gone through similar situations. they feel ignored or uncared for, they are labeled drug seekers when they go into the ER. their symptoms are not taken seriously. it's an issue that people in the medical field need to be aware of. 

there are also always 2 sides to a story and on one hand i understand the uncertanty (especially in an er setting) where drug seekers do tend to be an issue, however if your patient tells you specific issues, or tells you they have a condition you should either get someone who knows more about it or do a little info searching on your own. we need to start being treated like people who matter, whos symptoms are very real and despite the risks sometimes we just need to take that chance for relief.

I cannot tolerate these allergies. something needs to be done if I'm to finish my courses of treatment. i need a team that is proactive. I need doctors who understand that each case is different. I need a team to look at me and my personal needs and treat them personally. c.f. never had 2 cases that are the same, and so we shouldn't be cared for the same. Theres no reason i should have to put up a fight everytime i need something. 

classes teach you a lot. books are filled with info. but talking to a person and understanding what they tell you is just as valuble. gold, some may say. sick of the tape and the wires and the tubing, hopefully breaking out soon and my next post can be about something amazing haha, ill hang in there!!