Standing Up To Scleroderma: Introduction

Standing Up To Scleroderma: Introduction: Hello, my name is Kira and I was diagnosed with scleroderma four years ago.  I would like to spread the word about this disease.  I have the...

Cleaning My House, Physically and Mentally

2011 has been a crazy year for many of us who are Chronically Awesome, Spoonies, patients, caregivers, and really- all sentient beings in general.

This sentient being has taken this week (with the help of my brother) to just tear up my house, clean it and begin the year with a fresh start. All the garbage was set outside last night for pick up- mentally and physically. My mom will be back after a much needed stay with my sister. We will have a rotating schedule to keep her back and forth to enjoy both of her grandchildren and I get to spend time with her and have a little (okay let's be honest- a lot) of extra help around the house.

Change is good. 2012 for me is going to be about getting back to the basics and growing from there. I experienced spiritual and mental growth in 2011 and all roads are leading to making my life simpler and maybe giving myself more time to do what I love most; be with my son and write.

Enough about me. Is there anyone who would like to comment on changes made in 2011 or plans for change in 2012? Please share if changes you have made have worked for you or worked against you. I can't be the only person thinking about change and the new year this holiday season- could I?

How a Beauty School Drop-Out Became a Veteran- With a Twist of Thought

My dad and I had very little in common until I joined the military. He served as a Marine in Vietnam. I was in the Navy during Desert Storm. He was very surprised I had chosen to serve and to be very honest, so was I.

In 1990 I was 19 and working as a manicurist in Davis, California. My original plan was to work as a manicurist while attending beauty school to earn my Cosmetology License. I am forever grateful to my classmate Dianna. One day, I was doing a perm on my first human client. It took me two hours to put her in rollers, her clothes were soaking wet from our time at the shampoo bowl and Dianna kindly took over before I had the chance to give her a chemical burn. I still believe my subconscious had stepped in and decided to take matters into her own hands. I was not meant to do hair. That day I re-evaluated my goals. I eventually dropped out of beauty school and started taking academic classes. It was a better fit, but I still could not decide what I wanted to do with my life.

My social life wasn't so hot either. I got tired of doing nails and took a temp job for an insurance company. I was falling asleep at my desk because I was delivering pizza at night. I had just broken up with my boyfriend who was as hot as Bradley Cooper but had the personality of Jack Nicholson's character in "The Shinning". It was time to leave Davis. I grew up ten miles from the beach and wanted to do something near the ocean- get back to my roots. My first thought was Club Med or a cruise ship. My leads turned out to be dead ends. There was an age requirement of 26 at the time. My youth and inexperience were working against me. Then I thought, "Why not the military?".

First, I looked into the Army. Running with 80lb rucksack did not appeal to me. The Air Force would not guarantee me any specific job until I enlisted and one Marine in the family was enough. I finally chose the Navy. I was promised an automatic promotion (in writing) to E-4 upon completion of Radioman" A" School. They couldn't tell me where I was going, but I didn't care. The idea of being on a ship sounded like exactly what I needed. The ocean is one of the few places I find peace when I really need it. My direction had changed from a destination to a journey.

I can only speak about my reasons for joining the military. I served to challenge myself and get out of "Dodge". It might sound selfish but loving my country and wanting to serve it is implied when I signed on the dotted line. Doing it to better myself was my reward.
and my reward was greater than I had ever imagined. I learned a solid work eithic and learned how to be part of a team. This was by no means a perfect transition. It took some time, but I learned. I discovered that I was more capable than I had ever imagined. The biggest challenge of any task for me is the belief I can do it. Once I have faith in myself, I can accomplish anything. It could be why denial is such a great tool for me. If I can think I can, I do it. Just try and tell me I can't- it's practically a dare.

I started bootcamp in July of 1990. Then, Iraq invaded Kuwait and ruined what was supposed to be my Christmas in France. I spent the first half of my Naval career in Deck Division on a Destroyer Tender class ship, The USS Yellowstone. It was the only type of ship they were letting females on at the time. I learned to do maintenance on small boats and a lot of paint scraping, sanding and painting (the joy of rust prevention). It was dirty and hard work but how could I complain when I was outside all day? My "office" view changed often. Sometimes, it was the mountains of Crete, a blanket of blue with nothing but dolphins swimming nearby or a great view of the stars as the screw kicked up phospherescent kelp in the nightime sea.

The second half of my Naval career was spent inside a communications office with no windows on the USS Acadia. I used to look for things outside our "shack" that needed to be painted. I did enjoy working with teletypes, but they were phased out and replaced by quiet computers. To this day, I still bang the hell out of the keys on my laptop. As my time grew short in the Navy, I made my plans for college. After receiving an honorable discharge, I headed to Viterbo College in La Crosse, Wisconsin to earn a nursing degree. Shortly after school started, I was diagnosed with Scleroderma. My symptoms were relatively mild and I resided in a state of denial. It was a very confusing time for me, but I was managing. Then, it got cold.

The cold made my symptoms of Scleroderma worse. It was November and I was homesick. One morning, my dad called. He was the very first person to wish me a Happy Veteran's Day. I was over 2000 miles away, but I could feel the warmth and love through the phone. It was an unexpected right of passage and admission to an exclusive club. I could feel how proud he was through the phone.

That phone call from my dad was but one of many gifts and curses of being a veteran. At one time, Veteran's were percieved as escapees from the Island of Misfit Toys- which they are not. Veteran's are a group of men and women who were put in harm's way by many who have never served. Veterans volunteered to do what was asked of them by their country and lived to tell about it. I belong to this group of men and women who have done things I can only imagine. I often have to remind myself I did a thing or two to be in a group of such amazing people.

Being a veteran has also changed my perspective of the spirit of the United States and what it means to me to be a patriot. Growing up, I believed the flag was represented the spirit of the United States. Something almist worshipped. Don't get me wrong, I follow proper flag protocol and everytime I see it folded and handed to a loved one, I cry. It's a symbol of patriotism, but i do not have to wave one to proove I love my country.

After coming home to the States from 15 different countries, I have my own ideas about what it means to be a patriot.* The spirit of the United States is in the hearts of it's citizens; not a beautfully crafted piece of cloth; a red, white and blue bumper sticker or a plastic flag hanging out of the window of a car doing 80 mph. Patriotism is not cheering while sending a Service Member into harm's way based on hype or anything other than fact. It's patriotic to make damn sure if sending anyone into harm's way is the last possible resort. Being a patriot is supporting families of Service Members not with magnets and bumper stickers, but by making sure their loved ones have the equipment they need to do their job so they come home safely to their families. Patriotism is not turning away, but looking at and seeing the true cost of war.

As a veteran, I also belong to a proud group of people in my family. I do not say tradition, because I think no one should feel obligated to serve just because someone in their family has. On the Vasquez side, I joined my father, grandfather and great grandfather. On the Curiale side, I joined my mom's brother, my grandfather and my cousin Frank, who like many Veterans, his life was taken far too soon. Frank passed away in 2010 from complications due to Agent Orange. Like many Vietnam Veterans, he was denied the care he needed until it was too late. I visit the Veteran's hospital as a patient often. I see young men and women young enough to be my children with very visible injuries and invisible ones that are tucked away deep inside. Their pain, suffering and premature death is the true cost of war.

This Veteran's Day during the celebrations, parades and department store sales, take a moment to remember Veterans as people. Not symbols but people who took an oath to stand in harm's way for their country and do what was ordered by many who have never been in harm's way. Take one moment and think of Veterans who came back psycholgically and physically maimed. Think of the Service Members who never got the chance to be Veterans, brought home to their families in flag drapped coffins. Take a moment and think of the sacrifice of a minority of the citizens of this country. Is there a better day to think than Veteran's Day? Yes, every day there is a Service Member far from home in harm's way. Stop waving your flag for just a minute and think.

*It's different for everyone and these are my feelings and opinions.* Cheers
Excerpts from this post were taken from Scleroderma, Sarcoidosis and Box Wine from the post dated 11/11/2010. Also written by Karen Vasquez
This post was originally published 11/11/2011. This was moved from my website.

Raynaud's and Viagra

*Please Note: Every highlighted mention of Raynaud's goes to different websites. Please visit each one if you have time.

A friend on Twitter asked how Viagra helps me. I'll start with how Viagra became part of my Raynaud's treatment. Please scroll to the last paragraph if you would like "The Short Answer". It's okay, I will never know.
In 2006, I was hospitalized because the blood flow to my left thumb had stopped due to the spasm caused by Raynauds. My thumb quickly become infected and because of my history of MRSA, I went to the ER. I saw my regular pulmonologist once I was admitted into the hospital. Not to brag but he did develop a treatment protocol based on my hospital stay. He put me on vasodialtor so strong I had to reside in the Cardiac unit at UCLA for constant monitoring. The medication opened every vessel in my body and there was a very high risk of an immediate drop in blood pressure and sudden death, thus the need for monitoring. This treatment allowed blood flow back into my thumb & with an additional treatment with two IV antibiotics, the infection cleared and the wound healed. I had dodged the gangrene bullet. One of many revelations of this hospital stay was that the digital sympathecotmy I had was no longer effective. This risk I took far too lightly in 1996 when I elected to have the surgery.
There were some hurdles to overcome regarding the treatment plan of Raynaud's as an outpatient. One good thing about being an inpatient is your doctor can try meds while in the hospital, outpatient formularity is another can of worms. Rovatio seemed like a great medication, but my pulmonologist could not make that happen at the time because it was only allowed for treatment of PAH or Pulmonary Arterial Hypertension, which thankfully, I do not have. So the next drug of choice was Viagra.
The insurance I had at the time answered that request with a resounding "Oh HELL no." Despite intial denial, my rheumatologist and pulmonologist worked together to show why this was the only option to prevent further hospitalization- or in other words, "The Viagra option will cost less than denial of medication." Let's face it, when it comes to private insurance, you don't need to prove the efficacy of a medication, you have to prove it will save MONEY, not the patient. {Side note: this is why I have elected to use my Veteran's benefits and Medicare. You would be surprised how much easier it is to get around formulary restrictions when your healthcare is "socialized" like the VA- but that's a whole other topic.}

So, that's how I intially got Viagra with private insurance to treat my severe Raynaud's, but how did I get the VA to dispense Viagra to a female?

Back in 2005, before my Sarcoidosis diagnosis, my rheumatologist at the VA had no idea how to treat my increasing symptoms of what he thought was only Scleroderma. Luckily, my ex-husband and I owned our own business and we had what some medical professionals called, "Golden Insurance". My rheumatologist at the VA referred me to his collegue at UCLA Medical center. ( Later, I learned there is a thing called Managed Care through the VA which allows an outside physician provided by your own expense, to make recommendations to your primary care physician at the VA. Again- a whole other topic}

Once the "golden insurance" agreed to dispense Viagra, things went smooth for a while.
When our company went under, I went back to the VA. By then I was on Remicade with methotrexate for Sarcoidosis and Scleroderma. Remicade is not the first option in the formulary for treatment of Sarcoidosis and Scleroderma. Had I not been on Remicade already, two other medications would have had to be tried and then have failed before Remicade would be considered an option by the VA's formulary. Here is how i got around it: In order to put me on the meds in their formuary, I would have to be entirely detoxed of Remicade. By doing so, risked a major flare based on my history. I call it the "If it ain't broke, don't fix it" rationale.

Viagra was a bit of a challenge, but my rheumatologist at the VA was able to explain that Viagra significantly improved my circulation. More studies had circulated about the success of Viagra to treat Raynaud's present day, but back in '07- not so much. I still get plenty of weird looks when I pick up my script at the pharmacy, but I use the opportunity to enlighten the community that Viagra is not just "boner" medicine. Honestly, it's rediculous. It's considered a recreational drug by the VA. Truth is, if people were not so uptight and realized that a healthy sex life is a part of a healthy lifestyle, there would be nuch less miserey in this country. (Again- a whole other topic to cover!)
Now to answer the question of my twitter firend. How has Viagra benefitted my management of Raynaud's symptoms?
First of all, this is what works for me. Talk to your doctor about how you manage your Viagra.
I am prescribed 25mg of Viagra 4 times a day. On days I exercise, I do not feel I require all four doses, however there may be parts of my body I can't see such as my esophagus or internal organs experiencing Raynaud's symproms. I do not skip doses. I made that mistake with Nexium and now I have a scar tissue lined esophagus with no peristatlic movement. Yep," hot-dog down a hallway" style as chewed bits of food go down my throat.

Viagra helps a great deal, but it is not a cure all. It will not work if I do not make extra efforts of prevention. Again, Viagra helps manage Raynaud's. I just can't stress that enough.
In the morning when I get out of bed, especially in fall, winter or when staying places that have air-conditioning; Raynaud's starts first thing in the morning. I keep Viagra by my bed, set my alarm and take it before I am have to get out of bed. I take my 1st Viagra of the day and crawl back under my covers. I think it allows the vessles to dialate so that when I get out of bed, the ice cold feeling does not set in as soon as I step onto the cold floor. A great thing to do would be to get up immediatly and start moving but that can backfire sometimes if the medication hasn't had time to start working.
Once the meds have been in my system long enough, it makes it so much easier to get ready in the morning. A shower can sometimes make my hands feel like hamburger, but the Viagra helps prevent that. Once I am dressed, Viagra is not the only thing that helps me manage my Raynaud's.
Viagra is short acting, there are preventative steps to prevent a Raynaud's attack between doses. Here are mine:

1. Dress in layers. No matter what the temperature is, I always have three layers of thin clothing on my torso. My style is undershirt (long sleeved or tank top), overshirt (my "top or blouse"), jacket (zip up hoodie, blazer or heavy jacket)
2. NO Caffiene. Okay, I break this rule every morning because when my Niphedpine and Viagra Kick in together it keeps away my headaches. (This is my excuse, there are many others, but this one is mine!) Tea is a great alternative, but rememeber there is caffeene in decafinnated tea and there's always the variable of how sensitive I am to caffeene based on the weather, my stress levels or way the wind is blowing. Moderation is the key here. A small amount of something is ok for me, but it may not be for you. Use your melon.
3. When I feel a Raynaud's attack coming on, I get warm. Here are some evasive actions I have taken in weird places:
-If at a Day Spa- get in the Sauna
-Restroom hand dryer. I do love this one.
-Get in a warm car.
-If I'm with someone, I ask to borrow their jacket or any extra clothing to get around my torso, covering my hands is not enough. I will ask them to put their hands around mine. (A little awkward during a first date)
-If I am alone, I am not kidding-I pull my arms inside my shirt and stick my hands in my armpits. I know, ewww- but it works.
- I keep air activated hand warmers handy. I never apply it directly to skin experiencing the blood loss. I put the heated warmer or hot towel on my wrists. It warms the blood traveling to the constricted vessels and seems to help the spasm relax.
-VERY IMPORTANT- I never, ever apply something hot directly to blood deficient skin. It can cause a burn that could blister.
-Warm Water. I do not personally like this method. It works for some, but I have limited temperature sensing ability- especially in my fingers. Water can go from tempid to hot quickly before I can feel it. If you use this methid, be very careful.
-Exercise. This is the best thing that has helped me with Raynaud's, depression and pain management. I started easy woth simple breathing exercises, moved on to gentle yoga, walking, Zumba and my newest thing is spinning. It is hard to stay on a steady exercise schedule. Nothing fouls me up faster than a hospital stay or flare up. (A whole other topic)
-Don't give up. Just don't The pain of tissue death or eschemia caused by Raynaud's is excruciating. Healing is just as painful. It's hard not to be overwhelmed by the pain. Do your best to hang in there. Cry, scream, cuss but by all means never throw silverware! (found that one out the hard way) Don't be afraid to ask for pain meds. Find a calm and tactful way to describe the pain. I can't emphasize enough on the calm part. Snapping usually sets me back at least an hour while waiting for meds in the hospital.
I hear this a lot: "You don't need anything stronger."
My dream reply is, "Okay, go outside, look for the roughest asphalt you can find or break some glass, press your knuckles into it and scrape up and down as long as you can stand it. Then come in and if you let me pour lemon juice on your knuckes. Then I will take you at your word that I don't need stronger pain meds." I would not recommend this approach, but wouldn't it be great to actually SAY it?!!
Well that was my long answer to a short question from my friend, @MsUnProfessional on Twitter. Thank you for asking. The short answer is Viagra helps manage Raynaud's, prevent attacks and requires the patient to be proactive to be truely effective.

For more information:

The First Year-Scleroderma: An essential guide for the newly diagnosed. (nook)
By Karen Gottesman & Daniel Furst
Google Books

Sildenafil in Treatment of Raynaud's (2005)

What's With The Turtle?

Scleroderma, Sarcoidosis and Box Wine is going through changes. I have been working with a great Web Developer (be sure to type "turtle" in the box) and now have my own website. It's called, TheMightyTurtle.com Why Turtle, you ask?

1. It's a whole lot easier to spell and remember.

2. Thousands of Ridley Turtles lay their eggs at the same time. When millions of eggs hatch, their numbers overwhelm their predators which makes them more likely to survive. When you look at each autoimmune disease, our numbers are small. If you combine the number of people worldwide with autoimmune diseases the numbers are overwhelming. We are all in this together, and together we are stronger.

3. Sea turtles are beautiful, majestic and one of my favorite animals.

I do want to be clear about one thing: We are NOT turtles. We are many things from many different places. We already have Spoonies, The Chronically Awesome and many other great communities. The Mighty Turtle a part of those communities that already exist and looks forward to joining more. The Mighty Turtle is a member of the team.

You can always link to my new site from here, or you can follow it directly. I would eventually like to make the complete transition to the new site, but I am in no hurry.

So there it is. If you have an opinion, don't be shy and tell me what you think.
Thank you for reading,

Karen

Pssst.... Check This Out...

Hi everyone. Thank you for continuing to read my blog. I will soon have an address change. So far only friends and family have seen this. Please remember, this is a work in progress. I look forward to your feedback- please be gentle, but please more than anything- be honest. When I do a new post, I will go all social network crazy, but before I do, I want to share this with those who have been following my blog. Without you, my family and friends I would not have the inspiration to grow this. Please read the article that was published elsewhere and got Mary Bono Mack to block me on Twitter. If she represents your district, be sure to tell her hi. Also, ask her if she'll ever have an office in California.

The Mighty Turtle: Tales of Scleroderma, Sarcoidosis and Box Wine.

Thank you.

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.

Observations and Musings as a Guest of "Hotel" Veteran's Hospital

If you follow me on Twitter or Face Book,you already know I was admitted as an inpatient to the Veteran's Hospital near me. It's where I get my prescriptions filled, tests done and meet with 1/2 of my treatment team.

My treatment team consists of an internist, rheumatologist and podiatrist here at the VA. The leaders of my treatment team are a rheumatologist that specializes in Scleroderma and a pulmonologist, both at UCLA medical Center who oversee my treatment and to whom I take my most acute and baffling symptoms. How do I have such a well rounded group? I could say I am one of the lucky ones, which I know I am, but I fought tooth and nail to get here. I blog about my experiences of the last 20 years of symptoms because I believe we all should be as lucky as I am when it comes to healthcare.

I am a 100% Service Connected Veteran. What does that mean? The short answer is I developed symptoms of a condition as a result of my service in the military. After that, there is no short answer.

My VA benefits are based on my health condition, not rank or time in service. The symptoms of Scleroderma were documented while on active duty. Thanks to food poisoning from a Long John Silver's take out meal, a physician at North Island Naval Air Station in San Diego observed my hands turning blue. After months of reporting my blue hands in 1993, I was no longer considered a sick bay commando, crazy or an hysterical female. It was noted in my records, tests were done at Balboa Naval Hospital with all results coming back negative. I was told to stop taking birth control pills and cut down on my caffeine intake. (At the time I did not drink coffee). Twenty years later, I still have yet to find any correlation between birth control and Raynaud's, but that's a whole other post. After my four year hitch, I moved to La Crosse, Wisconsin. The nearest VA Hospital was in Madison, 3 hours away. In October of 1994 I was diagnosed with Scleroderma based on my blood tests and one good look at my nail beds. After submitting my paperwork three times with guidance from a Veteran's Service Officer and a letter to my Wisconsin Representative, I was finally given a 100% Service Connected rating. It means I am never turned away at any VA. All medical conditions the VA does not treat directly such as pregnancy, are paid for by the VA to the doctor and hospital of my choice. Because of the VA, my son and I are still alive because I was able choose to go to the best hospital when HELLP Syndrome struck in my third trimester (which is also another post).

I am able to see the doctors at UCLA because I am have Medicare and Social Security which I began paying into when I was 15. In 2005, my rheumatologist here at the VA had run out of treatment ideas. My disease was starting to progress quickly and he referred me to a colleague at UCLA. In 2007, after years of shortness of breath being written off as just another symptom of Scleroderma, I paid a visit to UCLA ER after receiving a radiology report that recommended, "Check for Lymphoma" My pulmonolgist immediately ordered a PET scan, which tested positive in my thoracic lymph nodes. They were enlarged, which explained the difficulty breathing. A biopsy was done and behold, my Sarcoidosis diagnosis. I was immediatly given Remicade. Had I been diagnosed at the VA, I would have been forced to go the formulary route. That involved trying and the failure of three other medications before I would be given the Remicade. It turned out Remicade keeps both my Scleroderma and Sarcoidosis from getting worse and after years of trial and error, I have a good prognosis and treatment plan that is working.


For those of you applying for service connected ratings, it is not an easy path. No one should have to fight for medical care- ex-military or not. Unfortunately, it's a journey we must take. For those of you fighting; don't give up. You must be your own advocate because you are the best person for the job. Submit and resubmit requests for disability ratings. In a profit driven healthcare stem, getting the proper care has become a war with many battles. Veteran's healthcare is socialized healthcare. It works. Unfortunately,profit driven companies are gaining from the sufferings of human beings. To them, it's not about what's best for the patient. It's about how to move product. I say companies because medical practitioners and staff should make a more than fair wage. These people put in mind bending hours of study and work that is always evolving, hence the term, "Medical Practice". Companies that pay dividends to shareholders- success is measured by their bottom line, not the success of treatment. That too is also a whole other post.

Tonight, I am writing from my hospital bed at the VA and the point of this post was originally to talk about the bond between Veterans. I feel an explanation of how I am able to get such great care is important. Not just for this post, but for anyone trying to get medical coverage through the VA or any other means. This has become a more detailed post than anticipated. I have many observations and I look forward to sharing with you during my stay and after I return home.

Thank you for reading and thank you in advance if you decide to share this post.