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

What It Means To Be My Caretaker

"I dont really do that much."

This is what my sister, Sarah, said to me when i was trying to explain to someone how much work she does to help me out and keep me healthy. I couldnt help but just nod and kind of stare at her because i didnt quite know how to tell her that in all of her 28 years shes never been more wrong than she was in that moment.

See last year in the beginning of August my lung collapsed while out at dinner with some friends. She knew what was wrong immediately and insisted we go to the ER when my stubborn self didnt wanna go. Of course we went because shes very persuasive and im glad we did. By the time we got there i was barely breathing and in lots of pain, she stayed in the room and by my side the whole time till they kicked her out because they needed to put a chest tube in. What we didnt know in that moment was that i wouldnt walk out of the hospital until almost Thanksgiving. 

After the first week i was sent to a different hospital to be put on the transplant list as they didnt think that my lungs were good enough to heal this on their own. As i signed all the papers to be put on the list she was handed a paper as well, she was agreeing to be my caregiver through the transplant process and help me afterwards. She was agreeing to drive me to appointments and help make sure my med schedule stayed on track. She was agreeing to help keep my bedroom and living room clean and to help with meals and errands till i was healed. She left her research position and put school on hold and it began.

She next few months she came by a few times a week and took my dirty clothes and brought me new ones, changed my pillow cases because im a diva and insist on having my own pillows and cases in the hospital, she threw me a big party in my hospital room for my 25th! Decorations app trays and all!! She came and slept over and had movie nights with me, she brought the kids to hang out and took walks outside with me. She brought me home cooked food and we ordered pizzas when the hospital food became too much. I wouldnt have been able to handle those 3 months as well as i did without her. 

I was lucky enough to receive an experimental surgery and be fitted with a device that allowed the chest tubes to be removed and i could finally go home, and she didnt skip a beat. I couldnt lift more than a gallon of milk and i was very tired all the time. Getting worn out super easily keeping up with everyday tasks became a chore and a half but she was right there. Laundry was done and meals were made and our home, like usual, was kept super clean. That alone makes a huge difference in my health. To not have dust and germs in my home keeps my lungs clear and my crappy immune system happy.

Today my health is back to normal, my lungs are inflated and i was able to work hard enough that im currently not active on the transplant list (to the surprise of everyone!). She still will make me meals when im not feeling good or pick things up from the store for me. She keeps the house super clean which is a chore in itself. When i have a hard day or my symptoms become too much she listens to me and i can see it in her face that shes genuinely sorry i have to go through this. All of this is more than she had to take on, let alone the fact i live with her and her family. Living alone got too hard for me years ago and i truly believe I would not be as healthy as i am had i never moved in with them. 

All of this plus the million other things she does is what she considers as "not much". However to me its everything. Being my caretaker isnt an easy job. Right now things are good, im healthy as ill ever be and i can babysit and take care of myself for the most part, but i will get sick again. I will be active on that list again, ill need her a lot more than i do right now again. The real kicker here is that im not worried even slightly, because i know for a fact shell be there and that im in the best hands i could ever be in. My sister is more than my caretaker, shes my best friend and i couldnt imagine life without her. Sick life sucks, but with the right people, its also a wonderful life. 

The Other Side of Your Support System

"Support system : a network of people who provide an individual with practical or emotional support." 

It sounds so serious at times, it sounds almost intimidating to me, and while i like the idea of it, the idea of a group of people in my life who together make up a system of constant love, support, and encouragement i also know that for people living with challenges like, but not limited to mine, this system can be very complicated. I'm not saying that the average healthy person doesn't have social problems but adding in chronic illness, constant hospitalizations, and stress through the roof doesn't necessarily help. Going into transplant one of the things they asked me about on my very first appointment was who do you have that you can lean on for support? Who do you have in your life that you can talk to, vent to, who can help you in hard times? My list went on and on. I had everyone. I listed my sister who's been my absolute rock for years and still is. Shes the only person i can honestly say i have absolutely zero doubts about leaving me in any way shape or form and who would run through a brick wall if she needed to. Shes strong as hell and shes a constant source of love and support. I listed my parents, who despite our rocky pasts and admittedly rocky present can be counted on for a certain level of support and help. I listed all of my friends and i listed my boyfriend because despite the hundreds of outs i gave him he swore it was worth it. I was confident in my list of people i was confident that this would be hard but that my support system wasn't something i had to worry about. Turns out i did. Here's the complicated part, the last 3 months I've gotten an out pouring of support online from different people, communities, companies, you name it all on my side wishing me well letting me know they're in my corner that they're behind me in my fight 100% and reading the love pouring in from all over the world melts my heart. To know that complete strangers care enough about me to to take time out of their days to send me a message or send me a package or a letter to brighten my day blows my mind!! Yet at the same time the people who i see on a regular basis are here feeling the stress and its overwhelming for them. I always thought of the people around me as the true heroes here, because while this is my life and i have to live it they have a chance to walk away from it and they never did, but lately a few have taken that walk. So while i have this online community rooting for me every day my personal support system was crumbling fast. The world keeps moving my friends have lives, they're 25 their finding their dream jobs, getting married, having children, going out on weekends, living it up like they should be and its not always ideal to sit in a hospital room. My boyfriend is an amazing man, I've never met anyone so caring and loving and constantly there for me no matter the situation but after 3 months stress builds, and he has his own well being and life to worry about and i cant be there to be a part of it and that puts a lot of strain on us as a couple. I  was caught up in my own version of what my support system was and what it meant that i forgot that the people in it are feeling this pressure too. I became too reliant on them. I lost my own sense of strength and i forgot the girl who walked into clinic head held high knowing i was gonna kick ass and come out a healthier person, able to travel, and live, and breathe like everyone else. Your support system can only be as strong as you let it, if you lose support for yourself they will feel it. its okay to lean on people and to need them but they cant be your only source of good. This process took it out of me, but I'm hanging in there. It took losing the people i leaned on the most to realize how much I'm capable of leaning on myself and since then I've been happier and healthier. Find the balance between asking for help and support and relying on the people around you for everything. Don't underestimate your own strength and will power, don't get to the place where your sitting in a room waiting for those people to come back because you just cant be you without them. Recognize that you need to support them too, take a little walk in they're shoes, understand the stress that this puts on them, and your rock solid support will stay diamond strong. 

People love you, let them when you need it, realize you can love yourself just as much though. <3