EVERYONE Deserves the Health Care Dick Cheney & I Have.

..."Keep, ancient lands, your storied pomp!" cries she
With silent lips. "Give me your tired, your poor,
Your huddled masses yearning to breathe free,
The wretched refuse of your teeming shore."
Emma Lazarus

Based on the cheers I heard about letting the uninsured die during the Tea Party Debate, I wonder if they would have led a protest against Emma Lazarus' poem.

I mention Dick Cheney, because I saw that he was wearing his heart in his blazer due to the failure of his own heart. I have never liked the man. Yes, we have met. He wouldn't remember. It was briefly while I was in the Navy. It's no secret I'm not fond of him, but I would never wish his or anyone's death.

I also mention him because many die of heart failure every year. How many are given an opportunity to have a portable, external pump 24/7? We'll get back to that.

Let's talk about my health care. In 1996, I had to fight for Veteran's health benefits and won. I started in 1994 and I am one of the lucky ones. I wrote to my Representative in Washington and magically, I was 100% service connection disabled. (Thank you Representative of La Crosse, WI in 1996. I apologize for not remembering your name) When awarded my Veteran's benefits, I called the VA and asked if the TV show, 20/20 would be knocking at my door to do an expose or something. After the government shut down of 1995, it was crazy times. To explain my benefits, here's my latest post on Google Plus and Facebook.

"EVERYONE deserves the medical care I get. I will be at Rheumatolgy at the VA today to pick up my records for my Rheumatologist in LA. I remember every day how lucky I am. May everyone soon have socialized healthcare like me. I'm able to see the best specialists at UCLA because of Medicare. My specialists make recommendations to the VA, who actually sent me to UCLA because they didn't know what to do with me. At the VA all my medications are covered. I am one of the lucky ones. Because of The VA and Medicare, my diseases are stabilized after 16 years, I have a good prognosis. EVERYONE should have access to such great care. EVERYONE. I served so I could go to college and get out of "Dodge". The truth is, not everyone can serve, and their contributions are important. My uninsured friends are priceless. They deserve great care just as much as I do."

So, why do Dick Cheney and I have health care, when so many others don't? I feel as though we are the "storied pomp", in Emma Lazarus' poem, but we are not. Everyone deserves the health care we get. I am confident that if I have heart failure, I would fight my ass off to get a portable unit. Not because I can afford that, but because VA Hospitals are teaching hospitals. You get fresh minds mixed with the brilliant experience and knowledge of the residents. I have seen many cases and experienced first hand care where money is not a factor. I would be careless to not mention they do have a medication formulary, but I have found ways around that to get what I need- and I'm happy to share how if anyone needs it.

So why does Dick Cheney get a heart pump and I get infusions without having to try two other medications and have them fail before I get my beloved Remicade?

I could speculate and make jokes, but I honestly have no idea. I have felt massive amounts of guilt watching friends and family try to make it without insurance. We are Americans- we're supposed to be the good guys. I grew up believing we stand for and with others who can't do it on their own. If I were Karen, the manicurist, I would've died in child birth because I wouldn't have had my magic letter. That's right, a magic letter.

When I was pregnant in 2003-04, the VA did and still does not deliver babies. I received a letter in the mail that stated something like, "The VA will pay for all medical care related to the health of this veteran regarding her current condition." When my blood pressure had become so high that I began to see orange spots, my OB/GYN sent me to Mary Birch Hospital in San Diego. Seventy two hours later, after shots of steroids and my organs began to fail, my son was delivered by C-section.

There is too much to that story to include all the details in this entry, but two things stick out.

1. I shared a semi private room with a woman my age in the same condition. Both of us were given steroid injections. After my 1st painful injection, I asked the nurse to put it in my IV. The next round of shots came and it was done. No question asked. I told my roommate to ask for the same. She did. They told her her insurance wouldn't allow it. (record scratch stop) Yes, a woman who needed to be kept calm because her blood pressure was dangerously high, had to be put through frequent painful injections. Imagine sitting in comfort while listening to someone cry because they are in so much pain- that could have been avoided. Did I deserve better treatment? No. I had the equivalent of a blank check. What Karen needed, Karen got. Meanwhile, my equal in the room next to me had to suffer because some asshole paper pusher decided she didn't need to feel comfortable. She could endure that pain. Both of us had HELLP Syndrome.

2. Three years later, I was in an emergency room at a public hospital, not a VA hospital because my ex-husband and I had a business. I was in charge of picking insurance for our family and employees. I heard more than one doctor call it "Golden Insurance". It's what got me in the door at UCLA and medicare makes it possible for me to keep going back to UCLA.

In the ER, the nurse assigned to me, shared her own experience with HELLP Syndrome. She had the exact symptoms I had, without the happy ending. Her insurance required her husband to drive her an extra hour after going completely blind because of her blood pressure while she was pregnant. The ER they were assigned was not equipped to handle her condition. She lost her baby. She continues to work as a nurse to keep her family insured. She has to, to stay alive. She needs heart medication and frequent treatment by a cardiologist. I couldn't say it, but all I could think was how unfair it was. Life is not supposed to be fair, but no one should be denied the care they need because of money. NO ONE. She lost her baby at 32 weeks and was in the ground, while my son- also born at 32 weeks, was at home getting ready to go camping.

So, I ask again, are Dick Cheney and I of more value than those two women above? Are we worth more than my friend Chelle? Are we worth more than Steph and Jennifer, Chelle mentions in the video below? No. But if I were Karen; the manicurist and he Dick; the retired electrician we would be both be dead.

Make time to watch Chelle's video.
Thank you.

Where Were You When You Found Nirvana?

For the duration of my short life of 40 years, my biggest greatest love has always been music. I played guitar (poorly). I was a listener. My high school sweetheart was a musician. Music has and still does soothe me in my most stressful of times. When I was pregnant, Voodoo Child (slight Return) by Jimi Hendrix would actually stop my heartburn. There is no memory I can recall without music.

In 1992, my ship was in port in Bahrain. I hated my job. I was locked indoors for 12 hours a day inside a communication "shack" on the ship. A big change from my last ship where I was in "Deck" Divison. Sure, it was long hours of chipping paint, sanding, priming and painting again- Which explains my hate of rust, but I digress. I was outdoors all day. My job was to work on a small boat mounted on a big ship floating in the middle of the ocean. Being in the shack all day made me wish for those days outside, chipping paint.

While our ship was in port in Bahrain, I would go on base to the pool. I'd swim laps, spend an hour in the gym, shower and head to the only club on base. It wasn't terrible. I had weird hours and worked nights frequently, leaving some days free to get my outdoor fix. I found my routine.

One day at the club, I was standing in line to order my usual shrimp, fries and Miller Lite combo. I was coming off of a night watch so I was there at lunchtime. No Jump! Jump! Jump! seeping in from the outside, just like lunchtime at the local pub. Suddenly, I heard this wonderful sound coming from the TV over the bar across the room. It not very loud, so I had to leave my place in line and cross the room. The sound was gritty, it was raw, I could feel it and it was fucking beautiful.

I just stood at the bar and watched. I only remember scattered parts of the black and white video, but do I remember just sitting there, listening in awe. At the end of the video, I went to the store and bough the CD. I don't remember if I even ate that day.

Today, millions of people will say Nirvana changed their life. Nirvana re-opened my mind to the world of music for me. I had grown so tired of the new music that was coming out that all I would listen to is David Bowie, Jimi Hendrix and "old" Metallica. I could finally join the 90's because the heavens opened up, a chorus of angels sang and it was Nirvana.

Today, I'm going to watch the Nirvana special with my 7 year old son on MTV. I will tell him about the bands, the clothes and the days when MTV used to play music. Of course he will ask about the smoking and if we ever really showered. Maybe he will finally understand the blue flannel shirt I wear while I'm writing. I bought it in 1993 for $5.00. It still looks good on me. I call it my thinking flannel. My little piece of Nirvana that when worn, brings out my teen spirit.

It's strange only because when I was his age, my dad made me sit down and watch a documentary about Jimi Hendrix. Some families have religion. We have music and today, I'm going to share Nirvana with my son. Here we are now, entertain us.

A Moment Off Topic

For those of you who follow me on Twitter, this afternoon and tonight you may have read tweets and retweets regarding the execution of Troy Davis. I am usually not shy about expressing my opinions or political leanings, but I do know the topic of the death penalty can be a deal breaker for many.

Thank you for continuing to follow and read my blog whether we agree or not. Here is not the place to defend my position. I just really wanted to thank those who hung in there while I expressed my position.

Gratefully,

Karen Vasquez

PS: If you do want to know my position, there will be a post about it- Just not here. This is where we unite to raise awareness and help one another. Many Thanks.

Sex, Scleroderma, Sarcoidosis and Chocolate Donuts.

This has nothing to do with age. Since my diagnosis of Scleroderma in 1994 and Sarcoidosis diagnosis in 2007, I have been hiding out. My body started changing all over. My flexibility disappeared overnight. I used to think I was constantly cycling through the 5 Stages of grief, but I have a new hypothesis: I think I may be a 40 year old teenager.

That's right, I think I am a teenager. Not the cool 19 year old kind either. I'm talking the 13 year old flat-chested-Are-You-There-God?-It's-Me-Margret (Judy Blume) type, except I have boobs.

Now that medication has stabilized both diseases. Health wise, I feel like the worst is over. The hurricane that was once my health has passed or I'm at least in eye of the storm. I'm living well with my invisible diseases. They are invisible unless you look closely at my hands. My elbows don't extend but my hips are starting to loosen up with the help of Anusara Yoga and Zumba. Here's another thing that's really freaking me out- it turns out I like sex.(Please note: this may or may not be a side effect of breaking up with my ex-husband and then boyfriend. A correlation? I'll have to research that one)

Autoimmune diseases can make it impossible to enjoy sex because it affects you ALL over. Well, now I like sex. As is the problem for all teenagers I too rarely get the opportunity.
Then there's another problem. Making friends. I'm learning to do that as well. When I meet someone I am just so happy to be interacting with an adult, I'll talk their ear off or overwhelm them. I was given some great advice by two good friends and as soon I figure this all out, I'll let you know. It's a work in progress. You know, I may never figure it "all" out, but I'm sure I will find some sort of middle ground.

Long story short: The last 20 years I have been hiding out, depressed and avoiding social contact because I was afraid to reach out to others while it was happening. I can't regret it because that would just make me more depressed. I have to look at it, identify it, accept it and move on. I also have 20 years of experiences to share that would curl even the straightest of hair. Sharing has been helpful for me. I hope it helps others too.
I feel like I am on the other side. This is me: I have a port-o-cath in my chest, every eight weeks I get infusions to keep me ahead of the game. If I stop exercising, there is a cost- usually an infection resulting in a hospital stay. I just experienced setting proper boundaries and I feel great about it because my house is mine again. This is my life. Friendships will come and go. The ones that remain are those that accept me with my faults as well as me learning how to be a good friend in return. As far as sex goes, oh, I'll get some- but it won't be with just anyone.

So that's it. That's my life today. Tomorrow I may freak out about a grey hair, but I'll worry about that when I see one.

Today, it's off to the dentist. Scleroderma affects teeth and gums as well. I get my teeth cleaned every 4 months thanks to that socialist organization, The Veteran's Administration. Plus I have some records of test results to pick up to bring to my specailists at UCLA, whom I am able to see thanks to that ponzi-scheme called Medicare.
Tomorrow, who knows? Maybe some sex and chocolate donuts(the Hostess kind you get at the gas station.
Now off to my Chronically Awesome Day- hope you have one as well!

Some great reading:
"Sexuality and Scleroderma" by Elaine Furst RA, MA, BSN
"Scleroderma and Dental Health" by Philip Naunert DDS
And I just can't get enough of Parry Gripp:
Best Burrito

My Wake Up Call

Today I get to hang out with my son who came home this morning singing this song that made coffee come out of my nose. Thank you Parry Grip!

Make sure you have swallowed your coffee before playing.

The Best Burrito

Have a great day!

30 things You Don't Know About My Invisible Illness

Hi everyone. I've posted answers to 30 questions about my invisible illnesses, Scleroderma and Sarcoidosis in the notes section of my FB page. Here is the link:Scleroderma, Sarcoidosis and Box Wine on FB

By the way, did you know that this week is Invisible Illness Week? No, I don't mean Snufaluffagus has the flu- it's about illnesses and disabilities that are not obvious such as trouble breathing and a whole mess of conditions you never heard of or could pronounce without help.

Thank you for reading.

Wound Care Could be Sexy. You Be The Judge

This has to do with wound care so if you are reading this over breakfast or any other meal, I suggest you finish that first before reading if you are squeamish.

It's great to be home after 4 days in the hospital for IV antibiotic treatment for cellulitis in my right foot. I was lucky enough to get to spend this evening with my son even though it was his time to be with his dad. So why am I up at 4:34am?

I just happened to get up and realized I needed a dressing change for a wound that I have had on my right hand for more than 2 months that is taking forever to heal. I had been wearing a band aid to protect it during the day and leaving it bare at night. There has really been no change over last few months until 2 days ago.

For those of you managing wound care for Raynaud's, you know this type all too well. The ulcer or pressure ulcer, like mine from repeated injury dries out, leaving not a dried blood scab, but white dead skin. Mine usually end up catching on something and start to come up and although the dried skin was basically a white scab when this happened healthy tissue would come off with it, leaving a crater the width and depth of a pencil eraser.

My usual treatment for this was Neosporin, gauze and paper tape to protect the newly exposed wound on the rim of the crater. For me, these never bleed. I am taking Viagra 4 times a day and nifedepine to maintain the blood flow to my fingers and toes, but it's not enough to supply blood flow to newly exposed tissue, which eventually dries out and falls off as the tissue begins to grow back. These craters, take months to regrow tissue to close the crater. With my conractured hands, I bump into things- usually right on the sore, prolonging the healing process.

In 1996, I was hospitalized for a gangrenous thumb on my right hand. To say it was painful was an understatement. Everyone's experience is different, but for me, the only thing that hurts worse than tissue dying, is when the tissue begins to grow back after drastic and risky meds or procedures to get blood flow to the tissue. Because of my gangrenous thumb, I still have a tiny nail bed on that thumb that has gradually become smaller over the last 15 years. In 1996, I was admitted into the VA Hospital in Madison, Wisconsin. The nurses were wonderful. They worked very hard to come up with a dressing that would help protect the wound and bring me some relief At this time, not only did I have a gangrenous thumb, I had open wounds or ulcers on eight knuckles, which were all infected. It felt like I had rubbed my knuckles on asphalt and poured lemon juice on them. One nurse tried a creme called Silvadene. The active ingredient was silver. The feeling of relief was indescribable after she applied it. My fingers felt sore, but the exposed tissue felt relief almost instantly.

The nurses working on me dressed my wounds with gauze and stockinette. I spent some time in the hospital until the wounds healed. Silvadene had never been used to treat skin ulcers from Raynaud's by anyone in that hospital. During my stay, it was used regularly. They were unable to send me home with any because it was for inpatient use only. Through the years, when I had infected ulcers I would ask for Sivadene at different treatment facilities and no one had it. I did not see anything like it until 2006.

In 2006, I had a severe attack of Raynaud's. I had been to the VA hospital near me, and my Rheumatologist there sent me to another rheumatologist at UCLA Medical center. I came to one of his clinics without an appointment. He could not see me because of his caseload and he asked me to go to the ER, so I did. I also see a pulmonologist at the VA and he was called to the ER after several doctors saw me and had no idea how to treat my condition effectively. The infection part was easy, antibiotics- but they needed to get blood flow to my fingers effectively. Viagra was still new and was just beginning to be used to treat pulmonary arterial hypertension (follow the link to learn more). My pulmonologist took an aggressive approach to get blood to my starved cells furthest from my heart. He prescribed medication that would dilate the blood vessels in my entire body so much so I needed to be monitored 24/7 on a heart monitor. I was admitted to the Geffen Cardiac Wing of UCLA medical center where I resided for 11 days.

Shortly after my admission, my fingers began to heal, but the infection in my knuckles seemed to spread all over my body. Infected ulcers started popping up on all of my knuckles, elbows and even the bridge of my nose. Infectious disease specialists were called in and they were baffled. Countless swabs and cultures were taken. Because I had been to so many countries while in the Navy, the team of doctors wanted to rule everything out. Tubes of blood were drawn every 12 hours. After a few days, I'm not even sure how many, a diagnosis was finally revealed. I had MRSA (follow the link to learn more). After years of countless infections and rounds of antibiotics, a diagnosis- finally! I was given rounds of antibiotics to treat it. The pus had stopped flowing from my knuckles. It was a beautiful thing.

While recovering and being given rounds of antibiotics while my blood vessels were being held open with medication that required me to be attached to a heart monitor around the clock, a wound nurse paid me a visit. I'm not sure if she was the first, but she was definitely the best. Instead of gauze, she used PolyMem Silver. It's a little thicker than regular gauze and has a sponge-like look and feel to it. She cut it to fit each open sore I had and secured it with a hypoallergenic surgical tape called Medipore. In addition, she gave me a bunch of sheets and tape to change the dressing on my own while in the hospital. It was for inpatient use only, and she left the dressings with me so I could change them myself while in the hospital. By the time I was ready to go home, I still had a bunch left over. I had to be monitored by a home health care nurse for a few weeks to make sure my blood pressure stayed within a normal range because I was on such a large dose of vasodilaters for such a long time and I still needed IV antibiotics. It was a very long recovery, but it was one of my best recoveries because now me and my doctors knew what to look for when diagnosing infected ulcerations.

If you have been keeping up with me on Twitter or Facebook, you know I was released from the hospital after a MRSA flare up. While there, I asked to see a wound care specialist. I wanted to see if i could get some silver gauze. She came in to see me. I described my previous experience with silver dressing. I could not remember the name of it, but she knew exactly what I was talking about. She left and came back with sheets of PolyMem Silver and a giant roll of Medipore. I almost fell over from surprise. I had been asking for it in outpatient clinics for years and no one knew what the hell IW was talking about or they had no idea how to get it. Low and behold there it was in front of me. I am wearing my PolyMem silver gauze under medipore right now over an ulcer I have had for at least 2 months. The tissue beneath the dressing is healing properly. No puss, no fuss.

Thanks for taking the tome to read about my experience. If you found this helpful, please share. This can be used for infections not related to Scleroderma. If you are having trouble with wound care, there are wound specialists out their. The secret is, knowing to ask to see one.