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

Moments.

Heres a question for you, when is the line crossed between bad days and depression? At what point do you realize that maybe you arent moody? Maybe its clinical. Most importantly how can you fix it?

My week this week hasnt been spent sitting bed looking longingly out the window, and i havent once had my dog whine at me with his leash in his mouth waiting to go for a walk like the drug commercials depict. I dont take a pill and suddenly im playing with the kids and playing fetch at the park it doesnt work that way. I smile i laugh im me in every way from a bystanders point of view. Internally i feel nothing, i feel the world spinning away from me, i feel my friends creating a gap that slowly enlarges with each fake laugh i try to force out when were together. 

CF kills my lungs, it destroys my pancreas, my kidneys are shot and my liver is hanging on for dear life (although my days of parties and bar hopping probably had a bigger impact on that than CF ever could). I cant blame CF for this recent mental unbalance and constant need for reassurance directly but i suspect it played a part. 

'

loving a Mississippi river view on a beautiful morning!

I have brief moments like driving through to Iowa for a wedding and passing fields of wild flowers that seemed to stretch for miles. Old farm houses that took me into daydreams of coffee on the expansive front porch bright and early. I passed river trails and nature preserves and was immediately engulfed in the pure contentedness i feel when walking through endless trees feeling like the only one in the world at the time. Listening to only the sounds of birds and the occasional crackling of sticks from something i must have startled. 

I have moments when i see my little sisters (which is too far and few between for my liking) and the laughter becomes genuine. Spending weekends being totally comfortable with who i am because while we dont see each other often i feel a comfort in being in their presence. I feel like they accept me and all of my quirks. "I like you because your so weird." said Jenny a few weeks ago, and i felt that i am weird, im different from most, i dont have the views and opinions of most and my hobbies and interests are not considered normal, yet this was the greatest compliment ive ever Enjoying a received

I have moments where one person can make me feel like a celebrity in my own little way. I have a best friends Grandma who was so genuinely excited to meet me it melted my heart right out of my chest. Enjoying a glass of wine and a conversation with her lifted me up in a way i havent felt in some time and i truly hope that i see her again. 

These moments are the ones that keep me on he ground. When my mind races so fast it could propel me straight into the atmosphere. Its going to be work. I need to be proactive and put myself out there, i need to surround myself with these seemingly small yet grand plans that lift me up. Pills help, im not saying theyre worthless but its up to me in the end. I know im strong, i know i have potential, and i know that when motivation strikes im unstoppable in every way. My last few weeks have been a roller coaster, but im never one to turn down a ride. I will beat this, i will persevere, and i will win. 

I guarantee this.