Insurance and CF

All my life I've been a costly female and I don't mean, because I like diamonds and sushi. Since the day I was born my life has been racking up bills, insurance and Medicaid. Big Pharma has pretty much owned me!

🤖My parents really had no say in the matter if they wanted to see me live and thrive with Cystic Fibrosis.

Luckily, I didn't start getting extreamly sick until I was older, but that didn't make anything any more or less expensive. With this I have to explain, I've only paid out of pocket no more than a $20.00 co-pay each month for my personal medications and maybe $10 for hospital visits. Of, course that changes depending on who our President is and what they think is best for Americans, when having no idea what it's like living the way I do.

☝Which, personally makes me feel they shouldn't have a say at all. Then, I rethink that! Because, without the government having a hand in my health and my health insurance, I would have never made it this far!! I keep seeing things about "I can only get generic meds." Or "You voted for Trump, if you lose your coverage it's your fault."

Generic meds are no better or no worse than the brand name meds. Want to know a secret? They are both made by the same pharmaceutical companies. They contain the SAME ingredients and most of the time it's the doctor who prescribes it that way. Just giving the pharmaceutical companies more money. Period!

💊As long as you are able to get your meds why are you complaining? You should be rejoicing that you only paid $4.20 instead of $20.36 for a 30 day supply of ONE med, when you take over 20 meds a day.

No, those are not real figures, I picked random ass amounts. These, however are real figures.

In ONE hospital stay from July 30th to Aug. 17th my insurance (Medicaid aka Government paid insurance) was charged, $80,154.00 for 18 days! Now, understand that's roughly $4,455.00, A DAY!

For the THREE times I've been hospitalized since moving to SC, Medicaid has paid $190,367.00 and leaving me to pay $80.00 out of pocket. Thank you, Medicaid for helping me live without making me live under a bridge, bankrupt.

☡And NO its not, because of the ACA or Obama. It's been like this for 30 years!

I am not one for numbers and I hate even typing all of them it hurts my head. However, please understand WHY I am sharing this information.

I am terminally ill! I live day to day in fear of what tomorrow may bring. One day I'm good and have all the energy in the world and the next I can be in the ICU fighting for my life. Cystic Fibrosis isn't an easy disease. It isn't something that makes any sense and will stop you on dime for no reason. I am, because of my severity with CF considered permanently disabled and unable to work!

Not all people with CF are like I am. Many are still able to work while managing their disease.

If not for the government paying for my stay and my generic medication, that I'm so thankful for, what do you suggest I do in order to pay this unbelievably large bill? Instead of insulting me via social media?

🕒.............anything yet?🕞..............No?🕤 You got nothing? Me either, which is why I am thankful for whatever plan they have. Anything is better than, nothing.

No matter what this president, the last one, or the next one does, I will still be sick! I will still be faced with these bills and I will still need ANY type of health care they decide on giving me and will be thankful for it!

💸Because, the Kardashian's money, I do not have and honestly if we add up ALL of my hospitalizations from day one plus 30 years later, even the Kardashian's or Trump's personal money couldn't afford it.

Things we can do to attempt to change the costs and not add to the blindness media shares.

1. Be thankful for the breath you breathe and whatever medications your insurance will pay for.

2. Address the Members of Congress on your behalf and the behalf of your disease concerning healthcare.

3. Educate yourself on the current policy and the possible changing of Healthcare and what it truly means for YOU. (DO NOT JUMP ON THE INTERNET BAN WAGON BELIEVING EVERYTHING YOU SEE ON FACEBOOK, including my blogs. I'm not in the "know, know" 100%)

4. Contact your diseases foundation(s) and see what if anything you can do to help your medical worrying. For Cystic Fibrosis, you can find what they are doing to help those with CF at, CFF

5. Finally, don't panic! Don't be mad at anyone who thinks differently than you. And DON'T blame someone who is afraid of losing their medical coverage on who they voted for. That's just hateful and asinine. 

As someone with a terminal/chronic/debilitating disease, just be thankful for today!

Always, Always Smile,
   Sandi
To follow my journey and see if I lose my coverage 🙊 like me on Facebook!

Update!!

This was a status update until I noticed it was forever and a day long! So, here is my medical "update " or should I say my medical cluster @$*!

Ahhh setting up a new everything and finding the right doctors has been torture the past few weeks! I feel like Hospice should have helped me set everything back up when they discharged me, instead of just never seeing or talking to me about anything at all.I feel like the entire hospice care system as I was seen by two different ones just dropped the ball with me all together. 

I have yet to speak to, Amedisys Hospice about them discharging me with the actual company. I was informed when I was discharged from Fairmont Regional Hospital by thier social worker that, Amedisys Hospice was not going to pick me back up as a patient.

Due to me not being, "Hospice minded". Which she explained to me just meant that I was still wanting to receive IV antibiotics to maintain my health at this level, instead of just letting my CF progress and worsen. I called hospice after that conversation and was ignored several times. I have still yet to be told by them that I'm no longer a Hospice patient.

♡Keep in mind my health has NOT changed from when the CF team first put me in Hospice Care. I have been able to maintain my level of health only, because of me wanting and getting IV antibiotics when I felt a flair coming on. My goal wasn't to die, I don't think that is anyone's goal! I am sick of being sick and so tired of being tired, however I'm 28 years old! I'm not ready to hang out with my Grandpa just yet! So, yes I'm still fighting to live!

The first issue that came from this BS is having to fix my insurance after being terrified when I was told I no longer had ANY type of insurance. Luckily, it was fixed last Wednesday, five days ago, but not without leaving me medication-less for two weeks.

♡I tried to get an appointment with the doctor that had me as a hospice patient, because he is a PCP in my home town as well as a hospice doctor. I figured it would be so much easier for him to be my actual PCP knowing everything I am going through and that my health is still just as bad as it was 3 month ago. They were setting up an appointment date for me with him and then couldn't be any more rude after I said I was discharged from hospice. With a very quick and snappy reply, "Oh never mind I thought you were still with him in hospice, no he doesn't have any room for a new patient!" Really? Really, no room? Ok!

WV had it as if my primary insurance was still with Amedisys Hospice and WV medicaid was secondary, so they wouldn't pay for anything until Hospice discharged me in writing! Of course the Hospice company was giving me a hard time with not returning phone calls and being unbelievably rude, complicated, and unprofessional when I did get ahold of them. Thankfully the insurance part is now fixed and is under control.

I now need to get an all new PCP, Pain, and GI doctor. I have to re-establish care with the Pulmonary doctors up at WVU Hospital or decide if I want to go to another hospital that specializes in CF near me like John Hopkins or UPMC. I just hate the drive and the fact that I'm rarely visited as is when I'm hospitalized now and WVU hospital is only a 30 minute drive away. Both of those choices are two hours away from home talk about being alone.

♡I have so much on my plate and so little know how when it comes to figuring any of this out. Needless to say tears of frustration is all I've know this past week. I will get through it and get it right, I just hope it's sooner than later.

BUT, I am feeling ok right now and WILL be home for Thanksgiving!!! At this point that is all that matters to me!! I do have a LONG day of running around and making phone calls tomorrow! It seems like I have the world set against me, but this girl will be with her family AT HOME eating yard bird, on a table and not in a hospital bed for the first time in 3 years this Thursday! That is all I need to keep me going at the moment!!

☆♡My entire family have all decided they never want hospice around them when it's their time. I'm not sure what it was or why I was treated or should I say mistreated by the hospice system, but it HAS to be a better experience with other people. Maybe I'm just a terrible patient or something I'm not sure. Maybe it was my age, my looks, my positive personality, my laughter, and smiles. Maybe it was CF and they were confused with it. I'm not sure what it was, but I pray, and I don't pray, that I'm the ONLY person that's ever been treated like this!!!!♡☆

Confused beyond confused,
   Sandi

For more information on my terrible not so fun roller coaster ride with Cystic Fibrosis follow me on Facebook!