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!

Unsaid Resentment & CF

📌Please, understand this blog doesn't come from a dark place. I'm extreamly happy and so greatful to my health change and still being here, breathing. The people in my life are an absolute blessing. I'd be lost without their love!!!📍

With that said, lets get deep....I can't help but feel like maybe, if the beach wasn't my saving grace and I didn't make it, that I'd be less of a burden to everyone around.

This disease is hell on me in so many different ways. It's also hell on Tyson, my parents, siblings, and friends.

I started to see how complicated being connected to me was, many years ago, but it wasn't until tonight that it hit me! People seem to act as if I'm an obligation and not someone they are excited to have around anymore.

For my friends it became hard to stay in touch. Hard to make plans. Even harder to invite me to weddings and special events. Which in turn broke my heart in so many ways. I knew why and understand you can't plan anything with me. It becomes to be a waste of time.

Two friends came down to the beach on separate occasions and I was so excited to see them and make plans. I either forget about the plans all together, what a great friend I am. Or I, yet again, end up hospitalized. Who wants to visit someone on their vacation in the hospital? I sure as hell wouldn't.

This makes for a stressful friendship. A friendship they wouldn't have if they were just to say screw it and cut all ties with me. Which a lot of my friends have and I don't blame them. If they don't take that route it's just a constant back and forth attempt to get together. Therefore, I'm a bigger headache than I need to be for them.

I've always been such a burden on my family from the moment I was born, even if they never voice it to me or see me as as one. Shit, if not for me and having CF, my parents could have had more than one child together. Instead I screwed that up. How is that fair to a newly wed couple? I basically, forced them to forget whatever plans they had on a bigger family and make me the center of everything, because I was sick.

Which, that just makes my older sister and brother (both from different marriages) very thrilled. A "special" kid needs more attention. Needs more love. Needs this and that and they both got put on back burners. I know a part of them wishes they had a healthy normal sister and not the one they have. I know they've both wished they didn't have a younger sister, because I came in sick, so I "had" to get what I wanted.

With the fear of loosing a child being hell on my parents I was treated differently than they were. I'm pretty sure if I wanted a unicorn, my father would have figured out how to find one. My sister and brother wanted something they had to figure out how to get it themselves, as teaching tools for them.

I'm not helping to ease my parents stress and fear either. By moving eight hours away from them they live in constant fear of that terrifying phone call. Adding extra stress when I'm in the hospital and they can't be here.

I know my mom has prayed for a healthy child and not me, probably a lot of times. I know my dad wanted a daughter that could race, ride, go fishing and do all of the things I wanted to do like a normal tomboy. He didn't want, me. The sick girl who could only half ass anything and was stuck in the hospital every year on my his birthday. I'm sure he thought a few of those years, "damn why can't she be normal, I'm sick of these pathetic hospital partys." Yet, he always smiled and laughed at the drinks I'd put in the sink filled with ice and the streamers I hang from my hospital room ceiling. My mom never said anything about her worries and just gave so much support and love.

I know it kills them inside.

Then we get to my husband. The man that's love for me is easily seen in his eyes and through his speech. That love has slowly turned to the obligation of taking care of his dying wife at 29 and not the ability to simply love me anymore. 

These are the times he should be coaching his sons football team and taking his daughter to ballet. Nope, sorry not if he wants to love ME. That will never happen for us. And it's my fault. I have taken that chance away from him. I know he hates me for it. He will never say it, but he does.

Somewhere between love and health issues we've gotten to resentment. I can see it in his eyes. I can hear it in voice. It's actually there with every action done glossed over in love. I've become more like the worst paying job he has ever had than the love of his life. Well, I guess I'm both now. 

The fact that my death is possible at any given time. I can't get up and be a normal wife any longer. He is left to take care of MY dog. I know he has wished I didn't have her, because I mean I can't walk her, can't really play with her, half the time I can't even feed and water her. I'm sure she's even thought about running away herself. Tyson is now basically expected to cook, clean, work, work odd jobs to make up for me not working, go grocrey shoppong on his own, do our laundry, pack and unpack our apartment every time we move, bathe the dog, clean up after the dog, shower me, clean up after me, and wash my hair. He has practically become a caregiver and not a husband to his wife. He doesn't even get any perks for all of this anymore. Nothing other than my singing his praises. I know he has thought, probably on a daily basis, "Fuck this, I'm leaving". I wouldn't blame him either.

Now, part of me wishes I didn't make it when we moved. For him. To let him have his life back. Maybe he'll find someone who can give him everything I can't. Not be stressed to the max and maybe have someone who can pitch in. Not me, the wife that can barley walk to the car. The wife that washes a single dish and needs 20 minutes to recuperate. I've caught him starting to look at me less like he finds me to still be "the most beautiful girl in the room" and more like he sees the ugly sick woman I see in the mirror right now. Someone who needs his constant care sitting in front of him each day.

Resentment is the only word that describes how I feel, all of these people feel towards me. 

Perhaps, it's my resentment for the disease and not theirs. 

Resentment for stopping our family from growing. Resentment for being isolated, over spoiled, and being the center of attention. Resentment for making everyday a worrisome one. Resentment for never being there when I say I will be or for even befriending me at all. Resentment for taking his life and stopping it at a stand still.

As much as I know the man loves me. My parents wouldn't trade me for anything and love me more than life. I know my friends who have stayed my friends have done so for a reason, why I don't know, honestly. I think my brother and sister are proud of me. I know for 100% they would be there if I ever needed them, and would claim me if asked. (Maybe, not sure about that part.) 

That still doesn't make me feel like any less of the burden, obligation, and resentment in their lives. I just wish I could change that part of this disease.

Not smiling as much today, yet still smiling,

  Sandi