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.