im back baby and ive got some views on the pain killer game

So my absence is hopefully ending now, its been a rough few months total but im on the mend and feeling better than i have in a long time!! Whatd you miss?? now a whole lot to be honest, lots of doctors appointments and the usual CF life. Some bigger ones are that im being evaluated to get gerd surgery to fix my acid reflux and also getting my wisdom teeth pulled, so those are some fun procedures to look forward too that hopefully will go smoothly as ill be knocked totally out for the whole lot! smooth sailing. i also seem to have a lot of swelling in my sinuses and were gonna start on some steroids (a higher dose..joy) and see if that helps, if not were considering another surgery to clear out those top sinuses again. but till then more debrievements and just trying to keep things clear!!

on the fun front ive gotten out a few times and had some nights in just having dinner and sleepovers with friends, watching movies and what not. i have to say the fact that i was able to attend the bridesmaid brunch for my best friend and daisy that you all know as katie was probably the highlight though! she got engaged recently to her boyfriend jim and the wedding is set for next september!! weve all been waiting for this one i think!! it was phenomenal and delicious and i had too many mimosas so it was a perfect afternoon! it was nice to get out with some girls and chat and eat, it was at alittle french place called nellcote and i had lobster hash which is now my new favorite benedict in the city! she made us beautiful bridesmaid packages with a personalized bottle of champagne and 2 bracelets which are gorgeous and well all wear them at the wedding )which im now under pressure to not loose!!!)

also i got out to the pumpkin farm with jake which i was so upset i had to miss last year it was great to make up for it, also the weather could NOT have been better for us!! i went a little crazy feeding the animals and petting the giraffes but i held it together pretty well haha. he has a few of my favorite pics on his phone so i cant post them right now but i fed a little kangeroo and a girafee and it made my life pretty much complete!! i got a few small pumpkins and love the little fall look it brought to my living room!

ive been feeling like myself more and more i cut my hair a bit and redyed the mermaid magic into it!! i feel way more like myself!! i odnt know why growing it out was ever even an option, not having colored hair just felt weird to me!! im having more and more days where i feel up to getting dressed and ready and doing my hair and makeup and making cute outfits (with the clothes i fit into....thanks water weight) and all in all id say im doing well. last i heard im still second on the transplant list so were still waiting on those lungs. im still using 2 liters, 3 with activity, and also i started cpap overnight and have been sleeping better than ever. all in all things are good and i appreciate all the love i got during my break as i didnt have the energy to keep up on posts.

on to my post : painkillers. this is a touchy topic for some, as the chronic illness community experiences such vast differences in levels of pain and needs for medicines to control it its a wide topic. I originally got going with this a few weeks back when i started needing more pain management myself and then tonight i watched the latest episode of John Oliver and it was on, you got it, opioid addiction. Some of the things i totally agreed with and were spot on but he did have a few misconceptions and annoyances to say the least.

starting with my own deal, i began having severe chest pains from the amount of coughing i was doing a few weeks back (these meds can cause some serious brain fog so please excuse my timeslines) and i was put on a 72 hour fentanyl patch, hydrocodone for breakthrough pain, and then a cough syrup with codeine to control the cough long enough to let the muscles and organs relax and hopefully help stop some of the pain at the source. its been very successful im still using the patches and the hydros but im done with the cough syrup as i know how important it is to be able to cough the junk up out of my lungs and i cannot cough effectively when i take that one.

ive been weary of pain meds for as far as i can remember because of addiction in my family (to other things) and i didnt want my life to become like theirs where they are dependant on a substance, but i was also sat down with and talked to about how controlling the pain is important to live a life not only in comfort but to be able to exercise or cough hard like i need to i need to be pain free for the most effectiveness. if that makes sense...i really hope it does haha. when my lung collapsed i was on high doses of morphine, fentanyl, and dilauded, and oxy, and everything else in the book for 3 months and i did develop a slight physical addiction and needed to withdrawl from that which was very difficult and now makes me even more weary of taking these kinds of meds.

using pain killers is a personal choice, some people have a high tolerance and really like to hold out, some have chronic pain and its a big deal for them to go without pain meds and its important to them that they use them as little as possible. others have a small tolerance and what may be a 4 on the pain scale to me could be more like a 6 or above to them. its all different per person.

John Olivers segment was more warning on addiction than anything else and how opioid use leads to addiction of other drugs (he was specifically using heroin as his example) and it is true that these medicines are highly addictive and can be considered gateway drugs and even when used as needed and in situations where its totally called for it can lead to a problem. this brings me to trouble getting prescription pain medicines.

drug seekers are out there no doubt but the general population are legitimate patients seeking real comfort. its hard in an er setting to get such comfort because thats where the drug seekers go as a last attempt. it can be hard to look at the doctor and tell thim about a pain that he cannot see but is all too real and get what you need from him or her. ive had my share of doctors send me home on tylenol when the next day my transplant doctor had me rushed back in and put on a pain management regimen because she understands whats happening with my body and that i have a real need for relief.

the pain scale can be a big problem in diagnosing real pain because people dont understand how to properly read and use it correctly, im including a link at the end of my post about the pain scale and proper usage for anyone whos interested but again keep in mind that your idea of a 7 or 8 may not be the same as someone elses. ive always had trouble with pain and ill continue to have trouble with it, not just with the feeling of pain but the availability to get medicines or relief due to addiction concerns and people who abuse the system. im just happy that for right now its controlled and im getting the care i really need and its helping me get my life back on track!!!

it all boils down to the individual patient and the need for the med vs the risk of the addiction and also the doctors ability to deal with the addiction should it form. i was weened off properly and all was well.....it takes a team and a lot of understanding.


pain scale ratings

CF Life is Hard, But Not Just for the Patients, Welcome to the Support Role.

"I didnt mind waiting, sleeping in a chair isnt that bad, its watching you in that much pain that hurt me the most." - Shawn after spending 8 hours with me in the ER and then another 45 mins in my room once i was admitted and settled in.

Saturday night i felt good. Despite my port not working i had gotten a midline placed so i could still stay at home and not miss any of my plans or classes and i was very grateful for my medical team for giving me that option.

A little past 1am while out celebrating my beautiful smart perfect little sister, Hannah, my arm, which was already sore since placement, was in a great deal of pain and very obviously swollen and red. At that point i knew something was very wrong but i did my dose of ivs and headed into the er, driven by my friend Shawn who has been so amazing since we reconnected (taking me to almost every appointment i have, holding my hand when im nervous, scared, and in pain, and always making time to stay with me in the hospital so im not alone). Once there we sat waiting for 7 hours total until they decided i needed the line out and they were gonna put in a peripheral iv to give me my antibiotics and work on fixing the damage to my arm and getting me a new port.

It was very painful and if i fully extend it i get shooting pains all down the arm and my hand goes numb and i get pins and needles, which leads the team to believe ive gotten severe nerve damage from the meds going into the midline and instead of staying in my vein, leaking into the muscle in my arm. So Sunday morning i started morphine to control it, and was admitted.

Next step was to get my port replaced as that seems to be the only option especially through transplant ill need lots of ivs and blood draws. They bumped me in to surgery in the IR on Tuesday (being a holiday weekend made the wait a little longer) and while under twilight sedation i got my shiny new port.
7 hours
The site is still painful and since ive essentially lost function in my right arm, having a new port on the left side doesnt help me get even the smallest tasks done. So heres my tie in.

Shawn, Nick, Katlin, Jake, Sarah, and countless online friends have stepped up their game. the second they knew what i was going through my phone blew up with messages and texts and my facebook was filled with well wishes and prayers that i heal soon and the pain is only short term. These people are all working their butts off to help me continue as normal of a life as possible. I tend to think at times that because its happening to me they cant possibly understand, and perhaps they dont. What they do instead is ask questions, they learn how im feeling and they take the time to listen to my doctors and nurses and do what they can whenever they can to help me when im in need.

Bringing food and coffee to the hospital, helping me run errands and pick up prescriptions,even helping me to clean up and take care of my dog is showing support and love unlike any other. I have a huge support system who goes through CF just as much as i do. They may be able to breathe but the hurt and stress that comes with watching me struggle so hard, the joy they feel from seeing me succeed, and the pain they feel when the tears begin to fall down my cheeks is all to real for them,

CF is not always personal, it takes a village. Im forever thankful for mine and i cant imagine the feelings some people go through who dont have that sort of support and love in their lives.

There is a small flip side however. There will always be friends who dont understand how much effort i put into my day to day life and will still get angry if i dont see them or talk to them much and i suppose i understand that too. My life is a never ending green light of go go go between plans workouts school and everything in between. Ive recently cut out some very negative presences in my life and ive noticed my stress begin to ease.

The ones left sleeping in hospital chairs holding my hand for 7 hours are truly selfless, the ones who wake up and leave on a moments notice to get me to an appointment or a school seminar because i cant drive, the ones who keep the house clean as can be and dust free for my fragile lungs, the ones who spend countless hours checking in on me and making sure im doing as good as can be and are always there with an offer to do anything at all the make my life easier. Its people who know i need help and send me goodie bags with anything they can think of to make me as comfortable and happy as possible.

Friends and family also aside theres my nurses. Nurses who go out of their way to page doctors over and over to get what you need, the nurses who literally tuck you in at night, the nurses who take their lunch break to watch a little bit of tv with you when your feeling lonely. They crack a joke just to see you smile for even a second and are always on your side.

Support systems are the glue that hold me together. I could never do this on my own. I could never go to a party downtown and end up in severe pain 3 hours later all alone. I encourage you to reflect on your support systems. note the people who are always there for you. The ones who whole heartedly understand, and try their best to if they dont. Surround yourself with positivity and your life, while maybe shorter than most, will also be more fulfilling.

CF caused me hell these past few days but i dont think im the hero. They are. They always will be. The ones who have my back through thick and thin and the ones who love me unconditionally. Thanks to them i was out of the hospital and back in class (dont worry i got a ride, there was no Norco driving for me!!!) in no time. Ive said it before and ill say it again, nothing in this world is going to stop be from achieving my goals!!


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