A Few Personal Words About The #AHCA

2017-04-23 17.10.22

The bill known as #AHCA Trumpdeath, gives tax cuts to wealthy. Why do they even attach anything to a healthcare bill that is not about healthcare?

I had three strokes, my last one at age 47. I have been trying to get back to “normal” for over six years now. I still can not use my left arm or hand much. I have been trying too hard. I am now in so much pain in my left shoulder, I cry out several times per day. Enough about me…I hope to live many more years, now that my high blood pressure was finally brought under control.

Here is someone elses story, copied from facebook, one of millions of stories. In 2015, I was diagnosed with stage IV colon cancer at 26. I am a Baltimore native and I moved home, abandoning the dream job I had been offered in Los Angeles, so that I could receive medical care at Johns Hopkins and be close to my family, on whom I had to lean emotionally and financially.

As a recent law school graduate, I understood the role the SCOTUS decision on the ACA played in my care, as I was still covered under my parents’ insurance for the surgery that saved my life by removing the tumor that was obstructing my colon. I also understood that without that coverage and guaranteed issue, I would not be able to get a new policy when that one expired the following year when I was halfway through my chemotherapy. So the ACA actually saved my life and livelihood TWICE in one year.

After the election, I felt a personal obligation to defend the ACA, or at least its essential provisions. I realized that the same coverage might not be there for the next recent graduate to be diagnosed (70,000 young adults are diagnosed with cancer every year) and that didn’t seem right to me, so I started sharing my story with whoever would listen.

In December, after 6 months of being cancer-free, my cancer returned, this time in my lungs and lymph nodes. Because everything was still small, we didn’t have to treat right away, so I knew I had to use that time to fight harder, both for my family and the families of my fellow survivors and patients, to make sure no one had to suffer financially, as well as emotionally and physically, through cancer. Since then, my family and I have been out protesting, rallying, and sharing our story over and over and over. We joined organizations like the American Cancer Society Cancer Action Network to voice our opposition to the AHCA in solidarity with the cancer community. I told my story, face to face, to nearly every representative Maryland has on Capitol Hill. And yesterday, shortly after the vote, Congressman Cummings told my story on the House floor, expressing the sorrow he felt for me and those in my position watching Republicans celebrate their victory.

I am telling you all this not to ask for your pity or your praise, but to tell you that despite the disappointment I felt yesterday, I am more inspired than ever to fight. Fighting is what cancer patients do best and we know that it comes in rounds. We won the first round, but the AHCA came back more aggressive, so it’s time to gather up our strength and do the work. I don’t know exactly when I will have to scale back on my efforts focus on my treatment, but imagine this fight will be far from over when that happens, so I am calling on you to fight on my behalf.

I’m asking you to join with organizations like the AMA, AARP, American Cancer Society, and the American Hospital Association to oppose this reprehensible bill. Demand town halls and meetings from your reps who voted for it. Organize demonstrations in front of their local offices during the recess. Start calling your Senators today. Speak at town halls and protests. If you know someone who relies on community rating or Medicaid for their care, urge them to tell their story or tell it for them if they can’t. Tell my story if you want.

Looks Like I am Screwed Again

Just a brief moment in time

I got a letter in the mail, about 7-8 pages long. I read through the whole thing and came to the conclusion, I am shit out of luck again. I love when it says see section so and so, I read three times over and section so and so is not there. Back to square one calling to see what kind of health insurance, if it will cover my therapy and meds, and how much it will cost me. I can see it now, last time they would not give me any answers until my start date. So much for being proactive. Hopefully, it won’t cost my life. That means when I call and get an ignorant witch, like I have in the past and have no more answers when I hang up then when I started my blood pressure is going to go through the roof. I wish health insurance was like gold coins, I would buy me the biggest bazooka and steal it, then give it away to people who need it. Dumb -asses standing in my way would get blown away. I am the type of person that would not hurt a fly, just to give you an indication of how pissed off this makes me.

The sad part is, why don’t they just make it simple to understand. Like one or two pages of direct information. If this means they are going to send me more catalog size booklets of provider listings in triplicate, and they can’t figure out that is unnecessary costs then they deserve to go bankrupt. Streamlined, computerized information makes it into every sector except healthcare. Common sense is what is missing all around.  I guess that is one thing the United States does not import from China. What are we really paying by lacking common sense in healthcare? It will be a sad day when the increasingly obese middle class population has heath care problems of the same or worse magnitude as me. Excuse me, I am going to take my self prescribed dose of Fukitol.

Tiny Part of My History

This post started as a reply to a comment, since it was getting so long I decided to write as my daily post. It gets tough to come up with topics, especially if I don’t know which way I want my blog to go.

old school-when you walked barefoot seven miles in a blizzard

About the picture of the cook stove in yesterday’s blog…..I wish that was my stove, but it was in a Museum…..it was blocked off, so I could not even get close to open the doors.  I have looked at them online, but I don’t even have a place to put one now…..I have moved in with my mother, temporarily, while my house is going through foreclosure. I am just starting to be able to maneuver a vacuum.  I mostly get my own breakfast and lunch, and I can cook now that I take steps without my cane, freeing my right hand  to carry stuff.  When my son is done with his school year, next summer, I plan on getting an apartment for a few years.  Meanwhile, I hope my left arm recovers enough so I can do almost anything.  I need to do this, even if it means learning new adaptive measures.

During March 2011 I was  on a mini-vacation, in North Carolina ,when I had my stroke.  I was sleeping at the hotel in Chapel Hill, I woke up in the middle of the night with what I call an anxiety or panic attack. I woke up my boyfriend and told him I thought I was dying.  I could not calm down. Once he had me calmer, I noticed my left arm was a little bit numb.  I thought I must have been sleeping on it, I always sleep on one side or another.  I got up and walked to the bathroom, at that time I was walking normal.  I decided to take a bath, so I would be ready for early the next morning, we were to take off to visit Myrtle Beach.  When I tried to get out of the tub I noticed it seemed harder to move.  I really did not think anything was wrong at this point, I thought I was tired. We had walked all over the previous day, and I spent the rest of the day working out in the hotel gym, swimming, and in the hot tub. I got dressed. While walking to go back to sleep my knee kept giving out.  I also noticed my arm felt number, even though I could still move it. This worried me only slightly, but never had I suspected a stroke.  I also thought it could not be a heart attack, since I had no pain.  I had read that heart attacks are different in women, I told my boyfriend something was wrong with me.  He called 911 right away, he was what I thought overly cautious.  By the time the paramedics came, I was convinced something was wrong, my arm was still numb, and my knee kept giving out. They insisted on taking me out on a stretcher, I thought I could walk down to the ambulance.  That was how clueless I was at the time.  Once they took my blood pressure, and said it was 280, I knew something was seriously wrong. I don’t remember what the bottom number was.  I still did not think it was a stroke until I could not move my left arm or leg at all. The paralysis arrived about the same time as I arrived to the hospital.

I felt very fortunate that the closest hospital was Duke University.  They had teams of doctors, some experts, some learning. They took a CAT scan right away, my brain was not bleeding at all.  The next day, they did a MRI. My main arteries where not clogged.  I had an ischemic stoke, not caused by a clot or bleed.  After more tests, they concluded that it was caused by a combination of high blood pressure, high triglycerides and something else I can’t remember now.  It caused one small capillary in my brain to collapse, or shut off.  The one, smaller than a pea size, part of my brain that died controlled the nerves and muscles in my left side.  They said some of the area around the “event” as they call it can recover, some parts eventually “rewire”, and a part is dead and not coming back.  Every stroke is different, every person recovers different, so they gave no predictions of what my final outcome will be.

I was in the hospital for a week, and most of the time that first day, I did not realize I could have died. When I talked to my employer, I actually said I don’t know when I am coming back, the doctors would not give me a return date.  In my mind, at the time, it would be a week or two.  The nurse finally spelled it out for me.  I would not be going back anytime soon, and it would be a long hard road just to get close to normal.

The original purpose of this post was to answer a reader’s comment.  I decided to use it as a post, and hopefully a warning to everyone that reads it, take your health seriously.  I was not on any meds at the time this happened.  I knew my blood pressure ran high.  My previous doctor said it was nothing they could not handle when it was in the 130-140 range.  I should have been put on meds then.  I had taken my pressure myself and got readings in the 180’s.  The doctor should have listened to me.  I finally changed my insurance at work, and called a new doctor.  Ironically, my first appointment with the new doctor was the week after my stroke.  Sadly, it was because it had to be booked so far in advance.  If you don’t think healthcare in the USA sucks, you are naive. Too little too late, too bad so sad for me. I won’t even go into my health insurance horror stories.  I have had to fight with the few doctors (that accepted my insurance and new patients) available since then to get my appointments sooner.  I still think waiting a few weeks is too long, but is better than waiting over a month like the doctor I never made it too. Everyone should believe in themselves, make the appointments, even if you have to argue with office staff. Take your meds, change your lifestyle, only if you want to live.

More points I think only a survivor can get across is the symptoms can vary slightly from one article you read to the next.  Some articles or campaigns make it sound like you have to have all the symptoms. You do not have them all.  I never had a headache, not even a slight one.  My stroke could have been deadly or more serious if I had not arrived at the hospital in time to drastically bring my blood pressure down. I did not feel that severely sick.  I also did not smoke or drink, which increases the chances of having a stroke.

To answer the question about what meds I am on now.

baby aspirin- this is good for anyone that can stomach it
Lopressor- metroprolol  50 mg twice a day
Amlodipine besylate 10 mg
Hydrochlorothiazide 25 mg
Lipitor currently….depending on insurance I was on Crestor (allergic to it)or Simvastatin, they also have other statins they change around depending on your health insurance (that just does not sit right with me)