Clearing Up Some Misconceptions About Health Insurance

Hi, 

I was having a conversation with one of my followers about how people just don't seem to understand what it means to be chronically/terminally ill. People in my experiences are the most clueless when it comes to the healthcare topic and being able to keep a job while being chronically/terminally ill. 

I get a lot of: "Well just get a job." Or "Oh I'm sure you'll find health insurance." Which is completely false and an ignorant comment on their part. Here is what I posted and I wanted to share it with you all because I think those who are perfectly health don't really understand just how hard it is to get health insurance when you are chronically/terminally ill or have a pre-existing condition.  

" It amazes me too how very little people know about how being chronically and/or terminally ill can effect all aspects of your life. A lot of people see me smiling and laughing at school, and they figure I can do anything. But they don't see the side of me that takes 45 pills a day, sleep with oxygen at night and get out of breath when just walking up a flight of stairs. They don't get that some days are better than others when it comes to my illness and they don't realize just how expensive keeping me alive is.

They are used to going to the doctor once a year while I go every 3 months. They think getting sick means getting a cold and having a prescription for some allergy medication. They don't think about needing to get approval from a health insurance company or having to deal with being denied the medication because it is too expensive. They don't have to deal with trying to find health insurance when no one wants to insure you because you're too expensive. It's frustrating and sometimes, its disheartening. But I am committed to spreading awareness that way more people will realize, this isn't just some flu like thing that once I get better its gone. This is going to live with me my whole life.

 As of right now, I am on my state's medical insurance but once I turn 21, I will have to put on my dad's. My dad owns a small engineering firm and I worry that because of my health insurance costs, his insurance premiums will sky rocket and he will end up going bankrupt... all because of me. I hope that once I graduate from college with my Psychology degree I will be able to get a job working as a child psychologist with a hospital; that way I can get good health insurance.

But what happens when I get sick for weeks on end and can't make it to work? I can't afford to get fired from a job. I can't afford to miss work but I have no control over it. Because of my heart and lungs, when I get a simple cold it turns into something horrific that makes me miss weeks. My senior year I missed 70+ days of school. If I do that at my job, there is no way I'd be able to keep it which means, bye-bye insurance and I can't afford to not have that... I'd die."

It is easy to sit there and tell someone to get a job so they can get health insurance. But its different when you yourself have a chronic, pre-exisiting condition and/or terminal illness that no one wants to insure you for that reason. So please, before you tell someone to just "get a job to get health insurance" remember that we would if we could.

Hope and Love,

Becca

Good and Bad News

Hi Everyone,

So I have some good news and some bad news. I'll start with the bad news that way we can end on a happy note. =D 

Lately I have not been feeling very well. I am tired, coughing constantly, short of breath and just all around - not feeling at my best. We have gone to the doctor twice now and each time they said that my lungs sounded fine. We took an X-Ray and they said that looked good too. So I got an ECHO yesterday, just to make sure that the function of my heart is doing okay. The doctor who looked at it said nothing stood out as worrisome so that is nice, but it still doesn't give us any answers. I am on some steroids to help, but so far I still don't feel very good. I have missed several days of math class - so I have withdrawn from that class. However, I am still in my biology class, English and Psychology and I am doing well in all of those classes. 

Now for the good news. A few months ago, I heard on the radio an advertisement for a non-profit organization asking for speakers to talk to kids about their experiences with bullying. I heard back from the woman today and I had a phone interview just a few minutes ago. I talked to her about growing up with my congenital heart defect, being bullied and even just the snide remarks strangers make because they don't understand why someone who looks so healthy can't even walk up a flight of stairs. Nothing is for sure yet, but the woman I spoke to said she loved my story and that she would leave a note for her supervisor to contact me within the next two months or so. She said that at that time they may not have an opening for me to fill but they would make sure to keep me on file for when they needed another speaker. She also told me that if I were to get the position, I would have to go to training twice a week for about four to six weeks then after that I would give a speech once or twice a month; I would get paid for this including the time spent in training. I am so excited and I can't wait to hear back from the woman!!!

Hope and Love, 

Becca   

Oregon!!

Hi everyone!!
Sorry I haven't written in a while. I have been really busy with my vacation in Oregon! Just a quick re-cap; I got to see my two uncles on my dad's side. Uncle Gary, his wife Lindy. And then we saw Uncle David and his wife Liz. It was a lot of fun to see them! I also saw my mom's cousin, Walt and his wife Weeze. The weather has been pretty nice so far. Yesterday we went to a small county fair which was fun and interesting to see the big difference between the fair here in a small town and a fair in Phoenix back home. We have made several trips to the Cheese Factory in Tillamook where I have gorged myself on my favorite ice-cream; Wild Mountain Blackberry. Yum!! We have seen several deer so far and we had a camp fire with the neighbors a few houses down from us.

The other day we went on a hike to a waterfall. The hike was only a mile but the trail was very windy and all down hill. Now we all know the saying ‘what goes down must come up.’ Same is true for when you walk down a hill, you must always walk back up it. Normally I prefer walking down hill than I do uphill because it is a lot easier and not as tiring. But on this hike I didn’t like either one too well. Normally when I am walking down it is on a flight of stairs, so I can pace myself and hold onto the railing. Well walking down a dirt path, there isn’t much to hold onto to help you slow down. So while I stumbled down the hill, my heart started to race because I was going so fast and couldn’t slow down to catch my breath. I actually started to feel light headed and stopped whenever there was a flat part of the trail before starting to walk down hill once more. I made it more than half way down the trail, but several of my family members who were already down the hill told my mom that the hill would be too steep for me to climb back up. So she and I sat for a while to let me catch my breath. When I had finally been able to start after “walking” down the hill, my legs were shaking so uncontrollably. My legs have only shook that badly one other time in my life and that was when I had finished a stress test in which I was on a treadmill, hooked up to machines, inside a hospital and they pushed me to see how far I could go before I had to stop. My legs shaking now scared me more than it did when I was in the hospital because, I was in the hospital. I knew that if anything happened, I would be safe. Here, out in the wilderness, not as safe. So after my legs calmed down we started the uphill trek towards our car. I must say, for the first time in my life I preferred going up hill as opposed to down hill because I could go slow, stop whenever I wanted to and my heart wasn’t racing. My heart works harder when I go up hill, which hurts and I don’t like it. Everyone now and then it’ll race when I walk up hill, depending on my speed. I made sure to go at a snail’s pace so it wouldn’t speed. We got to the car and I have never been more excited to see a flat surface before in my entire life. I am proud of what I did and how far I was able to go. But I will say, I never want to do it again. Ha-ha. On our way back up the hill I turn to my mom who was helping me up and I said: “So do you think we can tell Dr. Feinstein that I don’t need to do the stress test this year because I already did it today?” Even though my sides hurt from all the exercise and my heart was tired, I had enough energy to laugh. Sadly though, my mom doesn’t think my doctor will let me skip the stress test. Worth a shot though, right?
We got home after getting ice cream from Tillamook and I just laid down the whole night. I honestly never want to do another hike ever again in my life because of how uncomfortable it was, but I am glad that I did it; because it shows that I can do it. Having the energy to do that hike is something I am so thankful for. Our neighbor who went with us said: “Well you must be feeling good if you were up to trying that hike.” She is absolutely right. I am feeling good and I am so grateful for that.

Love,
Becca

Hope in the Hospital

Hi Everyone,

I went to visit two heart kids the other day at the hospital. My mom and I make an effort to go and visit the kids and their families whenever we can because we know how much it meant to us when people would come to comfort us when we were in the hospital. Both were little girls. I had met the other one before and last time I saw her she was full of energy; pulling at my necklace and jumping up and down in my lap. The day I went to visit her though she was extremely tired and she had been sleeping most of the day. It was just another reminder that one day you can be full of energy and then the next feel like you had nothing left in you; especially for heart kids when they are already so tired as it is. She celebrated her birthday on Monday and her mom got teary eyed when she said she had been hoping she wouldn’t have to celebrate another one in the hospital. I gave the mom a smile and told her, “She is young and won’t remember this birthday anyways. But what’s even more important is that she got to celebrate a birthday period.”  

The other little girl I went to visit was a little ball of fire! If she didn’t have the IV in her hand at first glance you would never have known she was sick; until you took a closer look at her and saw her blue lips and fingertips. This little was running all over the place, not giving a care in the world that her IV was pulling at her. We sat down on her bed while my mom and her mom talked quietly and the little girl started to put stickers all over my face as we laughed and played with her SpongeBob doll. A nurse came in and took her temperature and then asked to check her oxygen with the small pulse-ox. She started to cry and say she didn’t want it. (The pulse-ox is just a small piece of tape with a light on it that is able to see the percentage of air you have in your lungs; it doesn’t hurt or anything.) As the little girl cried and said she didn’t want it, I couldn’t help but blame her. While she very well knew it wouldn’t hurt, she still didn’t want it. She didn’t want anything more on her body. She didn’t want anything more done to her. She just wanted to sit on the bed, eat her Doritos and play with her toys like any other normal little girl should be doing. But instead she is cooped up in a hospital room with an IV stuck in her arm and having people poke and prod at her at all of the day and night. I placed my hand on the little girl’s lap and asked her if she would put it on if I did. She said yes and told me she wanted me to wear it first, so I did. She clapped when the machine said my oxygen was at 94% and then she gladly helped the nurse wrap the equipment onto her tiny finger with a big smile on her face. This little girl’s oxygen was at 77% but she had just as much excitement and energy as any other little girl I have ever seen. Once the nurse left the little girl crawled into my lap and told me, “We both have funny hearts.” I held back tears and gave her a peck on the top of her head and said “Yes we do.” When it was time for my mom and I to leave the little girl turned to her mom and repeated with tears in her eyes how she wanted to go too. She kept begging her mom to let her go home. I know the feeling all too well. . . While I know that the hospital is the best place for me when I am sick, I never want to be in there. I never enjoy being in there as a patient. I remember in 6^th grade I would cry to my mom and I would beg her to take me home. I remember telling her “Mom, I’ll even eat that horrible meat you cook if you just get me out of here!” I realize now though that my mom and dad hated me being in there just as much as I did. But I got out of the hospital and I have been able to live these past four years of my life like any other regular teenage girl. Gone to prom, went on Spring Break with my best friends and graduated from high school. I have no doubt in my mind that the two little girls I visited the other day will do the same.

Love and Hope,

Becca

You Can't Even Imagine

Hi Everyone, 

I was going through some of my old poems that I have written throughout the years today. I found a poem that I wrote this year for my creative writing class. The assignment was to write a poem about something that other people in the class would have no knowledge of. The teacher told us to write about something that other people may not be able to imagine themselves doing or going through. The topic I chose, was being terminally ill. Here is the poem: 

You Can't Even Imagine 

You can’t even begin to imagine

What it feels like

To know you are dying

You can’t even begin to imagine

What it feels like

To look at your parents

Knowing you may never see them again

Or how it feels to look around a room bursting with loneliness

And know that this place

This frightening place

Maybe the last thing you see before you die

You can’t even imagine

The horrifying embarrassment of having to ask your mom to help you to the bathroom

At age thirteen your strength is too fragile for you to even undo your own hospital gown

It feels as if you are back at age two

With your mom guiding you onto the freezing porcelain toilet then back down

Your dignity is stolen away from you because of your own body 

You can’t even imagine

Looking at yourself in the bathroom mirror

And seeing yourself for what might be the last time

The last time you see yourself and all you can see is your sunken eyes of sickness

The paper white complexion of a malicious infection eating its way through your body

Slowly swimming through your fragile veins and into your blood stream

You can’t even imagine

The sadness that consumes not only your mind

But every inch of your trembling body

When you see for the first time in weeks

Just how sick you truly are

You can’t even begin to imagine

The terror

Of having your life placed into the hands of someone else

You can’t even begin to imagine

The fear that overwhelms you when the mask is placed over your face

The plastic smell of medicine consumes your lungs

And you plead “please don’t let me die.”

You know that you are no longer in control of your life

You can’t even imagine

What it feels like

To know you may never wake up

From not only surgery

But also from this all too real nightmare 

In the class that I took we did peer editing. A boy who read my poem wrote me this: "I think you over used 'You Can't Even Imagine.' When I told my mom this she told me that his comments only proved my point even further of not being able to imagine what it was like to be chronically and terminally ill. Before you make a judgment on someone else, please try to picture what it would be like to be them. Maybe if we all walked a mile in each other's shoes, this world would be a much more understanding place. 

Love,

Becca 

Future???

Hi Everyone,

The 'What is my future going to be like?' is a question that has been coming to my mind lately. Partially because now that I am 18 years old and just a few months away from graduating high school; people have been asking me about my plans for college and the rest of my life. It's a scary thought, for any young adult; having to think of their future and making decisions about it. But for me, as a chronically ill teen it seems even tougher.

What will I do about insurance? What about if I have to go on my parent's insurance and their premiums sky rocket? Will they have to sell their home? Will we have to move out of state just to get better insurance? Will my mom have to get a job? What will happen to my dad's small business?

What will I do about covering for a heart-lung transplant? In the state of Arizona, once you turn 21, the goverment will not pay for the transplant. A lot of people just ask 'Why not get it now?' the answer is, my quality of life is too good. People have the misconception that if you need a transplant, you should get it right away. They also believe it fixes everything. It doesn't. Transplants are tricky things. Here are some things you should know about heart-lung transplants:

• You don't want to get it until you ABSOLOUTELY have to! (this goes for all transplants.)

The reason you wait as long as possble are:

• According to my transplant doctor in 2007 - 2008, less than 50% of patients are alive in 5 years after reciving a heart-lung transplant. - I want to wait until 5 years is EXTRA time to my life. Right now, 5 years is NOT extra time because I am doing so well. I have a life, when I stop having a life because of my heart and lungs is a time when we talk about transplants. The doctors said that they go off numbers but also how I as a patient feel. An example they gave me:
• My pressures (in my lungs; not high blood pressure.) could be 100, but my quality of life could be WONDERFUL, so despite the large numbers; the transplant would not be needed. But if my pressures were 80, but my quality of life was horrible, then we would start talking about transplants. It comes down to quality of life, not just numbers and science.

• Another reason is medically technologoy. The longer I wait, the more research is done into transplants. With more research comes better medicines, better medicines means less chances of infections and rejections; meaning my chances of living past the 5 year mark becomes better.

But the main reason to wait is really quality of life. My life is too good to chance it with a transplant that would cut my life down to less than 5 years when at this point in my life, there is no time limit!

Some other concerns with my life as I become older:
What will I do about having money while being a full time student? I know that I would not be able to work and go to school without jeopardizing my health. Heck, going to high school and being a full time pateint is tough for me to do!

What about if I get sick and have to drop out of college? Will that happen to me? If so, can I pick up in college where I left off? Or will I have to repeat?

Will I ever find a place that will hire me even though of my pre-existing condition? I know being a nurse at a hospital should have good health insurance. But usually that hospital only lets you go to certain other hospitals (if not itself), and what if those hospitals aren't the ones that are best for me and what I need done?

For the longest time (actually, all my life.) I depended on my mom and dad, as do most kids living with a Chronic Illness. For the longest time I only got scared when I went into the hospital. But now as I grow older, I become scared about more than that. I am starting to share the burden of the insurance issue as the major problem.

But also just trying to figure out my health. Right now my Thyroid is going crazy, and my pottasium is really low. I am exhausted 24/7, going to school has started to become a problem for me. I sleep almost all day on the weekends and even then I am still sluggish and tired. We are hoping it's just because of the Thyroid and once I get some medicine it will help. Keep your fingers crossed for me!

If any of you who are reading this are doctors to pediatrics or young adults, please take this to heart. We have a lot going on in our lives. We are trying to live a normal life while we have the burden of our health and sadly, sometimes insurance problems on our shoulders. Meanwhile we worry about grades, finding a college, trying to decide if we can work while we go to school and also trying to have a "normal" life. Life as a Chornically Ill Teen and Young Adult is not what people think it is. It is a sad, miraculous, triumphant, dis-heartening and frightning life that we live... please try to be understanding.

Love and Hope,
Becca