And it starts! Supplies finally arrived.

Supplies came FINALLY!! I will do a full update and info blog tomorrow about how everything is done. I wanted to do my dressing change video but it’s too late and I was over my initial 24hrs!!! It will need done in 7 days. So not this last time I was on homecare but the time before when we still lived in the city and I had my final fuck this moment, I taught David (my husband) how to do it when it needed fixed! I allow him to do it for numerous reasons:

  1. As stated above, my experience with home nurses and their inability to properly change and place a new dressing is beyond my patience level at this point in my life. Too many horror stories or needing to redo it immediately after because they don’t listen than I care to count.
  2. He has been tattooing for over 25yrs. He’s blood born pathogen certified and because of that he understands the IMPORTANCE of needing things to be and remain sterile.
  3. I haven’t found anything this man cannot do! Having had so my picc lines, I could do it myself if it truly came down to it. So I knew explaining things step by step through the entire process he could handle it and I trust him with my life.

I now have a fresh clean dressing and I can start my meds at 11pm. Yes I am still in pain but I am managing it, sorta. See everyone tomorrow morning for a full update. 💜

Late blog ….shit happens!

Happy Friday, I normally would be dropping a new blog right now. But today I have been coughing so much I pulled a muscle. So I’m laid up in bed thriving in pain. Send help and cough syrup!!! Possibly snacks too if I could sit up long enough to enjoy them! Ugh! But, this is our reality as chronically ill people. We never know what the day will bring. I had all kinds of plans when I got home at 5pm today. Finish recording my blog and finish up med organization during it. Then can some more things out of my garden. That idea went over as well as baptizing a cat! So here I am telling you that I will be late again. Consistency is one thing all Cystic Fibrosis patients strive for and sometimes we nail it. Other times we slam a wall at 100mph (figuratively speaking). Happy Friday and I hope you have a great weekend. New blog coming soon I promise.

Preview to Supplies Organization Blog

Guess who was supposed to get this excerpt dropped last night? Raises hand Unfortunately I do not have a legitimate reason this time, only that time simply slipped away from me. It happens I’m only human, and consistency is a huge goal. The only thing I’m consistent at right now is being a mom and wife. I can’t say it’s because of laziness. I can say it’s because I am a busy working mom/wife with a chronic illness and life happens. And sometimes it’s because of spontaneous decisions to enjoy some fun with friends. I’d rather have that excuse any day of the week over laziness or a hospital stay.

Anyway, this week we are gonna talk about medication organization. I wanted to drop a small taste about why it’s important, how to become more consistent with it and I’ll be doing this blog with a video. It’s very easy for an adult CF patients meds to get in total disarray for many reasons. Especially if we are busy or not feeling good. At some point all of us have gone through a non compliance phase and when you are busy like myself it’s easy to forget something once or twice a week. Nobody and I mean nobody is 100% compliant 365 days a year. I will address this in another blog. Because of this, over time we develop a stockpile which adds to the mountain of supplies we already have. It’s important for our own sanity, the sanity of the people we live with and to keep track of our supplies to keep things as organized as possible. Right now once a month I seriously revamp my medication, go through everything and rotate based on expiration. I will show you all of this in my vlog. I will also have tips to keep it as organized as humanly possible in between. I’m finding right before refills are due is working for me.
Catch me Friday, the 23rd when we dig deeper into this topic.

What Medicare for all REALLY means

If this isn’t a hot topic, then I don’t know what is and I’m pretty sure I’ll ruffle some feathers! But, let me start by saying that I want all of my Democratic friends who are for this to read and understand carefully everything that I am about to say.  I’m 36 years old and I have spent 33 of that inside doctors offices, hospitals, emergency rooms, urgent care facilities, specialists offices, and more.  Healthcare and health insurance are two different things but they go hand in hand in making sure we get the care we need and deserve.  In this country you can walk into an emergency room and get care with or without health insurance no matter who you are.  If you have been told you can’t, then you have been told a big fat lie!  There has been several times over the course of that 33 years that I have lost or did not have my health insurance.  As someone with a life threatening illness that’s a big deal.  But I was never denied care, and the bills I racked up were eventually taken care of through special programs or retro actively paid once I got it back. 

I will be the first to admit the system is broken.  But it is not broken for the reasons you think.  First, as someone with a chronic illness the fact that I have to even fight with the government for help and lazy ass people who work the system don’t.  If you don’t think that is the case then you haven’t spent as much time in social services as I have.  The fact that I get punished by the government for doing the right thing is flat out fucked up! I lost my Medicaid for getting married.  Something that most with my chronic illness don’t get to do or even plan.  So because I want as much of a normal life as possible, they punish me because my husband barely makes over the limit.  And I have to work part time in order to qualify for the EID Medicaid program and there is an income limit on that between the two of us.  I still haven’t gotten it back.  It’s a continuous fight while racking up the 20% Medicare doesn’t cover.  We’ll touch more on that later.  When it got to the point that I needed to go on disability or die (something I had serious issues with) and it took 2 years of fighting, a lawyer and a federal judge to tell the government I WAS disabled, is a problem.  My first two denial letters actually said because I could move my hands, arms and legs that I can work!  Nevermind that I couldn’t breathe, it didn’t matter to the government. That is just a few examples among many.  It’s broken because of the sections the government runs not because the government doens’t run it! Let me say that louder for those in the back.  IT’S BROKEN BECAUSE OF WHAT THE GOVERNMENT TOUCHES, NOT BECAUSE THE GOVERNMENT DOENS’T RUN IT!! Everything that I have issues with in the healthcare system is because the government sticks their grimey fingers in it and have no idea what they are doing.  It’s my goal to get down to capital hill and help start REAL CHANGE to these programs.  Change that doesn’t punish someone like me or the elderly.  My grandparents cannot get extra help with food or anything because their Medicare check is over the limit, but a refugee families limit is 5x as much!!! What sense does that make!!!!??? It doesn’t and that is the problem.  

I will say that everyone has a right to healthcare, and you already have that basic human right if you are in the United States, legal or not.  Health insurance is not a basic human right.  I probably just pissed you off with that didn’t I? Let me explain.  Health insurance is a “good” as part of the pursuit in the journey to life, liberty and happiness, just like housing, food, a job and more.  A right is not something that is given to you and it is not something the government can take away, although they try.  So basically no one owes any normal person a job, food, housing or health insurance.  It’s up to us to seek and acquire it.  There are exceptions for the sick, elderly and disabled of course. I believe it is our job as humans and the governments job to help those in need if DONE RIGHT! I refer back to the system being broken.  

So, Medicare for all sounds great right?  Sure it does, unless you truly know the consequences of socialized or government run healthcare.  Obamacare is my first example! What a shitshow, it was designed to fail from the beginning.  Premiums, co-pays, deductibles have all gone UP and they have changed some things they used to cover since the government forced their lovely program down our throats.  You might say, well you’re on disability how do you know?  Well, first some specialty medications I am on now require a hell of a fight to cover or they don’t cover it al all anymore since Obamacare.  Also my husband has had health insurance and I pay attention to the cost of EVERYTHING! As someone with a chronic illness I have always paid attention to those details.  Do you want to know what my out of pocket expenses would be with no health insurance, well over $100,000 a month! That’s just medicine and supplies.  Not including doctors, hospitals or wherever else I need to go.  Trump couldn’t even afford that! Anyway since insurance companies are running under Obamacare now, annual deductibles have soared, costs coming out of Davids check every week for insurance have gone up, co-pays are through the roof and copay for meds have skyrocketed.  Oh, did I mention you get fined for not having insurance!! What the fuck is that??? And a lot of people dropped their coverage including small businesses because the fine was cheaper.  The government sticking their nose across ALL healthcare has hurt more people than it has helped.  Thank god Trump at least got rid of the fine.  

Do you want to know why they have gone up?  The simple most direct answer is no competition.  The free market in health insurance has always drove premiums, deductibles down because they know someone else can offer better coverage for less.  The free market in any situation has always drove costs down.  Now there is no free market, so costs have gone up because they have to cover more people and it’s not a CHOICE anymore.  This is one of the reasons Medicare for all will be horrible.  Imagine if you will the costs of everything now and not even everyone is covered, add millions more people to that. Do you know how they pay for that?  They raise taxes on everyone.  Nothing is free, NOTHING!  Higher taxes means lots of negative impact on families, the economy, jobs and more.  Costs go up for everything, small business suffers.  I can tell you right now Medicare for all will bankrupt this country!

What else will happen?  Oh you thought higher taxes was it? Oh no no no…..that is just the beginning.  Medicare only covers roughly 80% of costs.  And they don’t even cover everything! There is an entire list of necessary procedures, basic care, medications, supplies and more that they refuse to cover!  I know, I’ve been dealing with them since 2006.  And just because they are gonna give it to all doesn’t mean they will make the coverage better, in fact the exact opposite will happen.  My teeth look like I have smoked crack for 30 years because of side effects my medicine causes and they refuse to help me.  I am even considered a special case and they won’t, neither will Medicaid.  Why, because they don’t feel it’s necessary to cover those basic needs.  Do you know you can die from infected teeth! Yeah, they don’t care not one bit.  That is just one example that is an ongoing fight for coverage.  So, who pays for the other 20%?  Medicaid?? Ha ha ha, they will bankrupt Medicaid so fast if they even tried that.  Nope, you are responsible!  How do you rack up a shit ton more bills? By having to pay for 20% of things you never had to pay for before.  Sounds fun right?  If you think hospitals and doctors are gonna deal with not getting that 20% you are out of your mind.

They are the other factor in this equation. Probably the most important factor.  You may think healthcare is shit in this country, and I will admit it’s not perfect.    But it is far superior to anyone else in the world especially those with socialized medicine or government run healthcare.  Let me explain what will happen if Medicare for All takes over.  Lets start with the basics.  What does private insurance pay your doctors and hospitals versus Medicare or Medicaid?  Don’t know?  Medicare pays them only 80% IF that and Medicaid pays less.  Private insurance pays 100 – 145% of a policy holders medical costs.  Hospitals, especially rely on this funding to help them operate on a daily basis.  This allows you right now to walk in and get the care you are receiving right now and expecting.  It’s that not able to deny you thing we talked about earlier.  Now switch on Medicare for All.  They lose an exceptional amount of funding to operate and the trickle down effects from that are astronomical.  Doctors quit because they are not getting paid enough or at all, hospitals can end up closing and more.  Lines become longer, wait time is through the roof, life lost because of that wait time or refusal of care because they just can’t hold anyone else!  Let’s say you need an operation because you tore your ACL.  Your surgery gets scheduled or done rather quickly now right?  Now imagine waiting 6 months to more than 2 years.  Someone dies because they need a heart operation and they have to wait.  This is already happening in other countries that have the same kind of programs.  Your quality of life is shot to shit!  Think about that long and hard, let that sink in.  And that is just for basic normal every day care.  Now add in the chronically ill like me.  Imagine what happens to us when we can’t get into an ER during a dire emergency, we are sick and can’t get into the doctors on normal time.  You wait 10x longer for transplants and die waiting.  People already die waiting on transplants, just amplify that by a lot if this takes hold.  The chronically ill, sick and disabled become obsolete.  Let’s talk life saving medication! This one is a big deal.  Every country around the world has CF patients waiting for the life saving medications we have in this country.  You want to know why they don’t have them?  GOVERNMENT FUNDED HEALTHCARE REFUSES TO PAY FOR IT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I run a support group for Cystic Fibrosis patients, their families and more.  I talk to many people around the world on a daily basis.  There are constant posts in my group bitching about what they don’t have, about needing medication desperately.  I get private messages on Facebook and Instagram from people in the UK, Moscow, Chile, Australia, and more begging me to mail them Symdeko, Cayston, Tobramycin, Enzymes because they cannot get it.  Do you know what will happen to OUR coverage if the government starts paying for everyone.  It stops covering life saving medications.  Let me guess you are gonna throw drug costs into this right?  Yeah, drug costs are a problem but not just for us, for everyone and that is another thing that needs worked on.  But even if costs go down, the cost for covering drugs for 350 million plus are still going to be astronomical and it won’t matter if it was $1,000 or $300,000.  The government is still going to start refusing to pay for it.  They already do it now, just imagine when they have to do it for all.  

Take it from someone that has been the government system since I was 3.  This is a bad idea and it is going to be the nail in the coffin, not just for people like me but for everyone is this country, our world renowned hospitals, doctors and more.  I speak from first hand experience in dealing with government funded programs that are already broken, that they refuse to fix in the correct manner or all together.  If they can’t get those right they sure as fuck are not going to get this right, by a long shot.  So I ask you again, to think long and hard about supporting anyone who wants this or in fact ANY VERSION of this they are spewing out!  Any version of this is a bad.  Think about the elderly, the sick, the chronically ill, the disabled in your family.  Think about yourself, what if something happens to you?  Do you want to wait or get turned away from healthcare, because you will. 

My Compliance Struggle

This past 18 months has been one of my worst struggles for treatment compliance in a very long time.  The last time I went this off the rails was many years ago when I was in full rebellion.  It was 2003 and I was hospitalized for the first time in my life! Street drugs and fuck my meds was the motto.  Boy did I pay dearly.  It sucked to realize I had gone 21 years of my life without being in the hospital and I managed to screw that record up because I was pissed off at life. I longed for the freedom to not have to worry about medication alarms, breathing treatments and a feeding tube schedule.  At that time it was 5 cans a night for 8hrs a night.  I was on about 16 different pills and 4 nebulizer meds.  As I have gotten older that treatment schedule has gotten more intense and I have added 7 more medications, more airway clearance techniques and my feeding tube schedule has changed to benefit me better.  Our job as CF patients is to stay alive and its’s like working 3 full time jobs.  It may seem easy but 23 medications, that include 5 nebulizers, airway clearance and supplemental nutrition isn’t as simple as some may think.  Then you have to add in taking in as many calories as necessary to maintain/gain weight if you are pancreatic insufficient (which I am).  Oh, and lets not forget doctors appointments and god forbid home IV meds or hospital stays.  It’s a lot and at times overwhelming.  

No one is perfect, and if you say you are compliant 100% of the time, you lie.  It’s that simple.  You may go through phases where you are on point and for a few months at a time.  But, everyone misses something every now and then.  Life happens, we run out the door on a busy morning, make plans last second and bolt without packing everything.  I can think of a million reasons why someone could miss a treatment.  For me, the latest reason has just been every day life as a mom, wife and a disability patient trying to work part time.  In the last 18 months I have bought a home, got married, my dad had a heart attack that required open heart surgery, I have been on homecare IV meds and even though my daughter (not biological for context) has been around 3 years I jumped into full time mom mode since we moved to Westminster.  My husband opened a business that I am trying to help him get off the ground and I am working part time on top of everything else.   Let that sink in for a minute.  Think about what your life is like if you are a working parent, then add 3 more full time jobs in the mix if you had my treatment schedule.  Your head just exploded right?  Yeah mine too!  Balance is key in these situations and I flat out suck at it right now.  I think overwhelmed would be an understatement.  That is why my compliance is all out of whack.  I don’t get everything in, and some times nothing at all.  My feeding tube is actually the one thing I can say that I don’t miss.  And even with that my weight is struggling.  I promise it’s not on purpose.  I am naturally high strung as you can imagine and sometimes I just go full HOT MESS EXPRESS on a busy day and forget things.  I’ll jump up in the morning to get Rhiannon ready for school and realize half way through the day I forgot morning meds or forgot to eat, or something.  And sometimes in the evening after dinner, all the running of errands or cheer/tumbling (oh did I forget to mention I’m a sports mom!), and settling in for the night I am just flat out exhausted.  So I hook my feeds, and in a moment of just wanting to relax for 5 minutes I pass out, no meds. FACEPALM MOMENT!!  It’s very easy to skip or miss something out of sheer mistake because you have 900 things to do a day on top of treatments.

This is why balance is key!  The most important thing when going through any struggle is to recognize the problem.  And I recognize that I have a compliance problem not only because I just know but because my lung function and weight are suffering!  I have CF clinic on the 17th and I am terrified to know what my lung function numbers are going to be.  I know my weight is down to 94, FML! I have not been this low in a long time.  But my weight stems more from a 2017 blockage & horrible hospital stay, lack of appetite and general issues with CF than compliance because my feeds are done.  But I also know that in order to gain weight my feed schedule may have to change.  Which will just add another challenge to the mix.  The second most important thing to do in this type of struggle is to tell your team of doctors and be 100% honest.  I talked about this policy a few years ago and I cannot stress enough the importance of honesty.  This is a hard lesson I have learned through my own mistakes, years of bullshitting my way through clinic and rebellion phase.  They will not be able to give you a proper plan to get back on track or to get better if you do not give them all the details of your current struggle.  Or, even your current symptoms for something that isn’t compliance related at all!  This honesty policy goes across the board to be able to have as many years under your belt as possible fighting this disease and to ultimately win the war.  

I know that we all like to think we have it all together, that we can handle it all.  Lord knows I act like I’m superwoman.  The truth is there may be someone who does on this planet and that’s great! Chances are they are not a mom, dad, wife, husband or chronically ill patient or a wife/mom who is chronically ill (which is me).  Most of the time I pretend that I can breathe, that I’m not in severe pain and that I got it all worked out.  I’ve gotten really good at hiding it, even from my husband on days where I need to get things done.  But if there was ever a time that I need to get balance and to get back on track, it’s now! I am no good at any job, being a wife/parent/fur mom, or running my household if I am not as healthy as I possibly can be as a 36 year old CF patient who wasn’t supposed to see the age of 10.  So as of tonight as soon as I land home from a much needed vacation and break, I’m putting myself on notice!  Monday’s clinic visit will be full of stress, honesty and putting a plan in place to get me back to my full potential.  

So, if you are a fellow CF’er or a chronically ill patient and you are reading this, please know I hear you and see you!  In my support group and on social media it may seem like I have it together but I don’t.  You are not alone in this struggle.  The time to act is now to find balance again.  I will be here for you however possible, for encouragement and accountability.  I can share my experiences from the past and present, what has worked for me before.  How I (in the words of Gary John Bishop) unfucked myself.  By the way if you have not read Unfuck Yourself by Gary John Bishop please grab that book today and read it!  I am almost done and it’s been a complete reset for my brain. Don’t hesitate to reach out to me.  We are in this fight together!