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?

 Why Turtle, you ask?

1. It's a whole lot easier to spell and remember than any greek named chronic illness.

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 cool.  The technical term is, "Totes Adorbs"

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.

Change You Can Believe Will Make You Pound Your Own Head Into A Table

Part I

Some things appear to be a good idea, for example; switching to decaf, using generic antiperspirant and buying the cheaper brand of dog food. Seems harmless enough. Then one day you're face to face with a pyramid of empty Red Bull cans, your cubicle smells like B.O. and your dog is crapping in your house. Let's face it; change isn't always a good idea.

Before my son's spring break last school year, my ex-husband called to tell me he thought our severely ADHD son should no longer be on medication and that we should, in his words, "take him off because of the side affects". Granted, his medication, like all medications has side effects. I too wish my child did not need medication to navigate through his busy day, but my ex-husband's idea gave me a very bad feeling. What he said was, "we should take him off his meds.", but I heard "Let’s each take a wire hanger, put 'em into them there slots in the wall and see what happens."

When my son was almost 4, his pediatrician had him evaluated by the school district for autism. It turns out,because I do not have a Master's in Psychology, but merely a Bachelor's it gave me just enough education to drive me insane thinking every little thing was a symptom of Autism. Because of his preterm birth, my son Jake and I had frequent visits to his pediatrician. While sitting in waiting rooms with my active guy, I saw others his age playing with their parents rather than attempting to dismantle the chair I was sitting in, as Jake would do. I brought toys, snacks and books, but nothing worked. We even had a special place to wait in his pediatrician’s office. Waiting with less stimuli made waiting rooms easier (for the other patients and their parents). Because of our frequent visits, sometimes more than once a week, Jake’s pediatrician saw this behavior and started preparing us for an ADHD diagnosis. She told us that he was young for medication, but it may be something we'd have to consider in the near future if he did not grow out of it. She eventually ordered an evaluation to rule out Autism. California has great programs for kids with special needs and the earlier the evaluation, the better. The school district psychologists agreed he had severe ADHD, not Autism. I was not surprised. ADHD runs in my family and because Jake was 2 months premature, it increased his chances of having it.

After Jake’s evaluation and diagnosis at age 3, I did everything I could to avoid medication. I tried every recommended behavior modification technique my pediatrician had in her arsenal. She had shared her son had ADHD and sympathized with our want to keep him off medication. Despite my efforts, I failed terribly. I say I failed because I was the one who implemented every suggestion while trying to work while my ex-husband worked longer hours. I was constantly picking him up early or having to go calm him down at pre-school during tantrums. After Jake was kicked out of his third preschool, there was one last preschool in town without a waiting list or large child to teacher ratio. It was a brand new school that had only been open a few weeks. I stopped by and spoke with the director. I was very upfront about Jake's behavior at his previous schools. She and her staff were very willing to work with our family to help Jake. They had a low ratio of four to one for Jake's age group and because it was a new facility, they did not yet have a large student population.

At his new pre-school, everyone worked hard with us to help Jake. The teachers on their break or even the director herself would come into his class at naptime and lay down with Jake until he would calm down enough to go to sleep. This allowed the teachers and aids to work undisrupted with the rest of the class. It was a short lived success. The meltdowns continued and he was starting to be a danger to other children because his tantrums were so out of control. These tantrums were not your run of the mill kicking and screaming. Although this was over four years ago, I can still see this look he would get during these fits. It was like he was looking at me, but he struggled to see me. I'll never know exactly what he felt, but when I looked at him while trying to calm him down, it was like looking at someone scrambling to hang onto the edge of a cliff, doing everything he could not to fall into the abyss. Because of the contractures of my hands, I had trouble holding onto him to keep him from hurting himself. In mid-tantrum as a last resort I would "wrestle him" to the ground and wrap him in a blanket. The weight of my body and the blanket would comfort him enough to calm down. This was too much for him to take. Keeping him off of medication now felt inhumane to me, so we finally broke own and got a prescription.

Success did not happen overnight. It took a while to get him up to the right dose. Eventually, this great kid and part time lost soul became a great kid who could adapt well to his environment. He started making friends at pre-school and napping instead of getting sent to the director's office or having to be picked up early from pre-school because of a meltdown. After the dust settled, the director of the school pulled me into her office. She knew how hard it was for me to go through with the decision to put Jake on medication, but she was expressed to me her relief as well. I will never forget her words, "I was in with him at naptime and he was calm for the first time. It was as if his mind had finally let go and allowed his body to relax." There were some tears and some hugging. I finally calmed down enough to leave her office. It wasn't the solution to our problems with ADHD; the medication was a tool to help his brain function properly.

Four years later, I expressed my concern about how bad an idea I thought taking Jake off his medication. (Wow that was a polite way to put it.) Jake was doing great in school. I did notice on non-school days, he needed some time to himself. He has separation anxiety issues left over from the divorce, but nothing that will not go away with time. I call it his peaking hour. I keep a 500 piece puzzle handy on the dinning room table and he'll wander over to it and occupy himself for at least an hour. He gets sucked into building Legos for hours at a time. He has friends who lived next door to us before we moved and they play well together. He has moments when he's grumpy, but I need my alone time every day and if I don't get it, I'm kind of a bitch. His behavior just seemed normal to me, but my ex was convinced he could manage off the medication and we should do it over Spring Break.

My ex was to have Jake for the 2 week spring break. After about 15 minutes of trying to reason with my ex-husband, I realized this crazy train was departing with or without me. I reluctantly agreed, but only under the supervision of Jake's pediatrician. My ex felt that he had a very strong argument and was not shy about telling me and my Bachelor's Degree in Psychology were no match for his friend's Master's degrees in Education and his semester of Child Development. I knew what would happen. My son's pediatrician is an MD, so I made an appointment.

This has taken a month to write so as to not sound live a revenge pice. It is not. This is at one sided account story of two parents who strongly disagree. Stay tuned for the conclusion.

Going Home

It's 1am, I should be sleeping because I have a long drive tomorrow.

I have enjoyed leaving the worries of the day to day behind, but I am ready to go return. I'm ready to crash the Rheumatology clinic at the VA because they are probably over-booked. I'm ready to go back to taking better care of myself so I will not wake up with a mouth full of stomach acid. I am ready for my son to go back to school and make new friends. Most of all, I'm ready to settle into my routine. A routine with loyalty to no one but me and my son. So if you happen to see some crazy brunette signing in her car, try no to laugh to hard. It really is for speech therapy.

Have a great Monday and don't forget today is a gift. That is why it's called the present. Even if you open your present and find dog poo.

Stomach Acid. Inspiring, Isn't it?

It's 4:20am and I have just spent the last 20 minutes gargling and rinsing after waking up lying flat with a mouth full of stomach acid. You see I fell asleep on a stack of pillows practically sitting up, but gravity had it's way with me last night. It's been happening frequently on my vacation because I forgot to pack my wedge pillow. This time it was so awful, I'm too freaked out to go back to sleep.

I have to admit, I don't follow all the rules of Reflux. I have coffee in the morning. Occasionally I eat onions. Last night, I had Ice cream. I usually do not eat at least 4 hours before going to bed. I was planning on staying up to watch the movie Paul with my brother, but I crashed while I was putting my son to sleep. He's on the tail end of his separation anxiety phase and until he's completely asleep, he's got a death grip on my arm.

He's about to start the school year next week. He's progressively getting better and will soon have no problem falling asleep on his own. I know I'm supposed to just let him cry himself to sleep, but I just can't. To be honest,I have separation anxiety as well. He stays with his dad every other week. I hate joint custody. I feel like I'm cheating or something because he's with his dad 2 weeks out of the month. Shouldn't I be enjoying my free time?

I think the root of the problem is that deep down I feel like I will be making up for time I haven't lost yet. Let's be realistic: I have two progressive diseases. I plan to live another 60 years and although I don't believe in God I can still hear her laughing.

I'm afraid of what I might miss, so that extra 8 hours a day I spend with him while I'm sleeping will somehow make up for it. I also take every opportunity to drop some knowledge on my son. He has a great vocabulary for a 7 year old. I don't give him nick names for private parts when he asks me where babies come from. I tell him the truth about how he came into this world 8 weeks early, but it's a happy story because I got to meet him 8 weeks early. It's amazing how one can learn to spin a story about an event that scared the shit out of my family, into an amazing story of how strong I believe this little boy is.

You see, although my health is an ongoing sometimes soul suckingly depressing fact of my life, I am one of the lucky ones. We all know someday we are going to be gone from this world. Anything can change in a minute. No different that a completely healthy person stepping in front of a bus. But for me and probably many like me we are very aware we are living on borrowed time. Every minute is a gift. I've squandered my share, but to finally get to my point, I use every teaching moment I can with my son. I also forgive myself for giving into his separation anxiety issues at night when he goes to sleep.

This started out as a rant about Reflux, but like any good therapy session, it shined daylight on the underlying issue. Not my son's separation anxiety, but my own. I make any moment I can a teaching moment and just for now, it's okay to indulge myself by listening to him sleep at night. This phase is in it's transition with him. He will be going to bed on his own anytime, but just for now I'm going to take advantage of the extra hours I get with my son, even though he's asleep, because every moment is a gift.

Accidental Vacations and Other Random Acts

It looks like I accidentally decided to take a break from writing. My summer has been full of introspection, friends and family- when geographically possible. I've been spending a lot of time on twitter meeting some great people all over the world. I'm not exactly sure when it happened, but this summer I felt less like an anomaly and more like a member of a growing community. This community is chronically awesome, inspiring, into spoons, has depression, PTSD, is bipolar, has a sick sense of humor like me and too much to list here, but most of all, live with visible and invisible diseases or conditions. For such a huge group of people with so many different issues, we have a lot in commom.

Part of my adventure has been looking at my relationships woth others and setting boundaries. I started a Box Wine Book club on Face Book. I had to stop reading the first book. I'll be adding my next one as soon as I finish it. Right now I'm reading Setting Boundaries with Difficult People by David Leiberman. So far, it's pretty good.

Last week, I had the honor of representing The Scleroderma Foundation at the Orange County Fair in Costa, Mesa, California at the Bounce to a Cure Event. James did break his own World Record with over 206k consecutive bounces. His determination was inspiring. I had the honor of working with his brother Chris and had a blast. everyone should be lucky enough to have a brother like Chris. Watching him share his knowledge of Scleroderma and cheering on his brother was a privilege and I look forward to helping the Scleroderma Foundation in the future. Visit James' FB page and website for all the details and his years of inspiring work.

I am ending my summer on a happy note. I am grateful for each and every person I have met, been followed and unfollowed by on twitter. Thanks to all of you who continue to read my blog, friend me on Face Book, pay attention to my Get Glue goings on, forgive me when I acciedentally tweet under my name for my friend's candy company- then delete it and every other fault you tolerate with humor. Thank you for answering my daily questions on Face Book. By doing so and keeping up with the #chronicallyawesome on twitter, you are helping to raise awareness about Scleroderma, Sarcoidosis and what life is like living live with a chronic illness invisible or not. The care givers', friends' and family members' comments and input are just as valuable as those with the disease or condition. I have no words to stress that enough. We feel as if we are in this alone, but to experience the helplessness of watching a person you love in the fight of their life can be just as soul scarring as having the condition.

Thanks for reading and I look forward to hearing from you and more writing the remainder of 20011 and beyond.

What's New

Well I can't tell you EVERYTHING, but I will dish. I've made some changes in my life. I broke up with my boyfriend a few months ago. He's now my room mate in addtion to the other room mate. I moved my room right next to my son's and let my ex have the master bedroom. Why still live together? Well, it's a 3 year lease, he walks the dogs and is a very good friend. So it's the opposite of Three's Company, 2 men and a woman.

If you follow me on Twitter or Face Book, you have seen I recently took a trip to The Bay Area to my brother's. He and my sister are my two best friends, so we were one short but we had a great time. I brought my son's Skippy Jon Jones along on my road trip. While I was up north my laptop exploded and I'm still in the process of exorcising the demons from my desktop PC. So now I am typing on a teeny tiny Dell I'm in love with because it works.

I have been working with Jules of www.whatthejules.com We have been video blogging or "vlogging" together. We work well together and we are becoming great friends. Please visit her site to check out our Vlog-isodes. We have chemistry and we think we are quite funny.

I started a Box Wine Book club on face book. I am currently in therapy to work on growing my spine after years of playing a door mat. I thought, "what a great idea to share the books I'm reading". So, I posted a book I had started reading. The more I read the more it became about my walk with Jesus and less about my journey. Hey, I love Jesus. he was all about caring for the sick and all, but that has nothing to do with my spine regeneration. So, that's the last time I do a book club about a book I'm in the process of reading. I'm changing the book to Bossy Pants by Tina Fey. I've read it, it's wonderful and I can't wait to talk about it on Face Book with anyone who has or is reading it.

I have set two new goals. The first is to allow myself to be me. Yes, I'm just going to "be" for a while. I never quite got over my divorce as far as being on my own for a while so other than the occasional friend with benefits, no relationships for me. My second goal is to get into shape and have an ass almost as well sculpted as Shakira's. I say almost because let's face it, that woman has got a fine backside. It's good to have goals.

How will I do it you ask? Well the first goal will involve reading and learning about setting boundaries.For example, I used to expect the worst from people so that I would never be disappointed. It turns out that was a very bad idea. I'm going to expect the best. So far, I like this approach much better. I have a lot to learn about myself and life and I look forward to the personal growth, which I hope never stops. I will acheive my second goal by Yoga and Zumba. My motivation is to post some hot pictures of me- fully clothed of course. After looking through photo albums from the last 10 years, I have few very good pictures of just me. I though it would help motivate me if I felt like skipping Zumba class and so far, it's working.
I am also working with someone to rebuild my blog. Most of my energy will be spent putting that together so please forgive me for my fewer postings. I do appreciate everyone who takes time from their busy day to read my 2 cents. I am very grateful.

So, now that you are up to speed, please visit my Face Book page and answer my question of the day. Thanks again for reading and raising awareness of Scleroderma, Sarcoidosis, Autoimmune diseases and my quest for a backside like Shakira's.

Monkeys and Changes

You may have noticed the term #FlyingMonkeys if you follow me on twitter. It started with a conversation I was having and just didn't know how to respond. Having a chronic illness I constantly hear things like, "get well" or "I hope you feel better soon". They are well intended wishes and I know people wish these things for me and many others. When I tell someone I hope well for them and it doesn't happen, saying it again seems pointless because they are only words. So I thought, why not say words that will make someone smile. Humorous confusion is funny and laughter can lift someone's spirit. #FlyingMonkeys belongs to everyone and is meant as an expression of compassion or whatever you want it to be as long as it makes someone smile. Words can be meaningless just as much as they can be powerful. Why not use these powers for good?

My inner Freud would analyze & attach some sort of meaning or rules, but there are only two rules for #FlyingMonkeys. Allow me to simplify it in the spirit of Fight Club:

The first rule of #Flyingmonkeys is it be used only for good.
The second rule of #flyingmonkeys is follow the first rule.
See, easy like cake. (I have never understood the term "easy as pie". Cake is so much easier.)

About the changes... You may have seen me in a Vlog or two with @julianna12369 of www.whatthejules.com. We have combined our powers and have decided to use them for good. Together, with many more on twitter we are #chronicallyawesome. Do a search on twitter with #chronicallyawesome or #FlyingMonkeys and see the goings on, connect with others. It's not just about Autoimmune diseases, it's about life and its complications.

Now about me: I'm going to be making some major changes to my blog. My life is not just Scleroderma and Sarcoidosis. I can't even drink box wine anymore. My alcohol consumption has to be rare so I save it for special occasions. I have also created a Face Book page, Karen Vasquez so I can receive direct messages from anyone who has questions, concerns or complaints. It's also a place where I will post more photos etc because I will know who can view the page. I allow posting on it, but if I see a post trying to sell some crazy miracle cure I will unfriend and block you. I still have the blog page but there is no way to send me messages.

I will still be submitting articles to my Spoonie friends along with others.

Have you visited What the Jules? .com yet? Check out our Vlogs together.Go, NOW! My article about Social Security is already up- check it out. Jules also has some great articles from other bloggers as well as her own work to read as well. We Vlog together because it is geographically possible, it's fun, we have chemistry and let's face it- we are easy on the eyes. I will be posting my own Vlogs but they will be much shorter. I will expose you to my solo rantings in small bits. You are welcome.

Thanks for continuing to read my blog, reading my rantings on Twitter and following my adventures on Face Book. I have 20 years of chronically awesome adventures that I hope people can learn from and find helpful. #FlyingMonkeys to all and have a #ChronicallyAwesome Day!

Alice's Bucket List

Hello everyone!!! It's been a busy week and I have yet to post about the great pictures and fun we at the the 9th annual walk for the SclerodermaFoundation in Southern California.

I would like to recommend a blog, then if you have time please visit twitter, say something nice to Alice or just tweet #AliceBucketList
Check out her blog. Read about her story. One of her wishes is to trend on twitter.
http://alicepyne.blogspot.com/

Thanks for taking the time out of your busy day for Alice.
Cheers.

Scleroderma Walk This Sunday

Hello all! I have been busy with doctor's appointments all week so I will be posting some oldies,but goodies you might have missed. If you feel like it, share with friends to help raise awareness.

Thanks you for continuing to read this blog and showing your support by learning about Scleroderma. See you at the walk on sunday! Can't make it? Show your support with a donation.Every donation makes a difference, no matter how small.

Visit my fundraising page to see how you can help.

In 2007, My Remicade Infusion Cost $22,000.00

Yesterday, I had an infusion of Remicade that in 2007 cost $22,000. (I saw the cost on my insurance statement back in 2007.) Remicade with Methotrexate suppresses my immune system to keep Sarcoidosis and Scleroderma from progressing further. In other words, they keep my chronic potentially fatal diseases from killing me.

Today, I have three doctor's appointments three days of this week. I have tried to volunteer at a local non-profit and I felt like a flake because I am constantly sick or have doctor's appointments. I am one of the lucky ones. Most people have to work to keep their medical benefits so they can afford their medications and go in sick because if they loose their jobs and benefits, they will die without their meds. (I was going to revise that last sentence, but I’m kind of proud of that run-on)

Everyone should have the healthcare I do. I am a 100% Service Connected Veteran and I am lucky enough to qualify for Medicare. Medicare made it possible for the Doctors at the VA to refer me to a specialist when they had no idea how to treat my condition. I will elaborate more in another post, but I need to get to my doctor's appointment for some routine poking and prodding- and no, no one buys me dinner after. I wouldn't have time anyway, I have too many appointments.

If you haven't had the chance, please read and share this article I submitted to But You Don't Look Sick.com

I was informed thatyesterday was World Lupus Day, but other websites say it's May 12th. I'm so confused. I won't be confined to an easy chair and IV on the 12th as I was yesterday, so I may not be as tweetey, but I will do my best.

If you feel like it, do a search on Twitter for #WorldLupusDay. You may find some fun facts (or just facts depending on your sense of humor). Yes, I know this is a blog about Scleroderma and Sarcoidosis, but it's all autoimmune baby! Research and breakthroughs with other diseases open doors for better treatment and the possibility of a cure for all diseases. Together, we are stronger.
Thanks for reading and have a great day everyone.

The Only Thing I Love More Than Reading is Sharing

The only thing I love more than writing is reading.
The only thing I love more than reading is sharing what I've read.
This is by Shel Dougherty and I think her son will be okay.

How to Scar an 8 Year Old


Have a great laugh and a great day everyone!

PS: The Kama Sutra Sweet Almond Oil works well too.

Raynaud's : What Works for Me.

Exercise. It’s good for all blood vessels. Yoga and breathing exercises help me cope with pain. Stress is a HUGE trigger for Raynaud's for me. Yoga has helped me cope. I started with Kundalini Yoga in 2005. I just started studying Anusara yoga one on one with a yogi at Yoga Living Studio here in Temecula. It's helping a great deal. Remember, exercise is always a good idea.

Eating well is also a good idea, but beware of anyone who tries to sell you herbs specifically for symptom or diseases. For example, cayenne pepper is excellent for circulation, but if you have any type of Reflux, it will damage your esophagus. I mention the alternative medicine because if you seek out a yogi or yoga instructor focus on the exercise. Chanting and movement doesn't cause exacerbation of symptoms.

In 1994, My Raynaud's was very aggressive. I was in college, had to change my major, break up with my boyfriend who I moved to Wisconsin with from California. Some of us have stressors we're not even aware of. I was in denial, which was the stressor I ignored and found some poor ways of dealing with it.

Raynaud's is a response by the sympathetic nervous system- fight or flight. It is an unconscious reaction to a threat. Now that we're no longer hunter/gatherers threatened by predators our stress has changed, but the fight or flight response is still present. How will we feed ourselves? Take care of our offspring? Deal with our environment? (i.e. cold) Take care of ourselves?

As someone who experienced Raynaud’s at a young age, I would suggest to anyone with Raynaud's to find ways to cope with stress such as yoga, meditation & exercise. Don't hunt for stressors if you don't know what they are. That just creates more stress. Focus on the coping so that you are prepared for whatever life hands you. Something as simple as a manicure or pedicure once a week is a stress reliever. A massage once a month is great. My biggest regret is not doing yoga in my 20's. I discovered it in my 30's. Find a studio near you. Keep working with your doctors. I have some posts about what happened to me on my blog. I don't want to scare anyone so if you read them, please keep in mind this was almost 20 yrs ago, before Viagra and no one believed me when I reported my onset of symptom. Back then my doctors wrote it off as "hysterical female syndrome".

Here is the website to the Yoga Studio I go to called Living Yoga Andrea; the owner is also an excellent source of information as well. You may be able to find a place similar to it in your area if Temecual is too far.

One more thing:
My mom used to massage my hands gently, when she could and when I lived with her. Just throwing that out there. If I was sitting around watching TV, I'd take a wet towel, put it in the microwave until warm, coat my hands with lotion (I now use Kama Sutra Almond oil- works better than anything I've tried and smells great) cover my lotioned or oiled hands with towel and relax while watching TV or hanging out. Then after the towel cooled, my mom would gently massage my fingers, great for my circulation and my mind. A partner, roomate or a good friend also make great massage buddies. It's one way friends and family can help when they feel helpless.

Kama Sutra Almond Oil

Parenting from the Couch by Christina Stevens: A Must Read.

I haven't given up on writing. I've been doing research and I have been coming across some great posts that put the chronic illness experience into perspective. This is another one of those articles.
Parenting from the Couch

Monday Blog Share

I found some new to me blogs. I just love to share things I find fun, educating and inspring.

Happy Monday!

Adventure in Estrogen

Neurologica Blog

Bad Astronomy

Back Packing Dad

If I list too many, people may not check these out. If you are not included in these lists, don't be disappointed. I still love to read you. I just want these lists to have meaning and not overwhelm.

Have a great Monday everyone!

Paying People To Stay Home

Paying People To Stay Home

Our 20 Year Anniversary. Yes, me and Raynaud's Here's some Ideas From an Old couple.

Yes, it’s been 20 with Raynaud's. Here's a timeline list.

1. My doctors didn't believe me.

2. My Doctors were not sure what the hell it was.

3. Its Scleroderma. CREST is not just my favorite toothpaste anymore.

4. Happy 20th with Raynaud's! (Should I register at Macy's or REI for TEVA sandals?)

One good thing that I have from my 20 relationship with Raynaud's is a wealth of information of what not to do. Even better, things that have helped that I can share with others. REMEMBER: These are things that work for me. Check with your doctor. Nothing is ever one size fits all.

1. It doesn't matter what climate you live in, just take precautions and be plan to be cold all the time. It's a real timesaver.

2. Tune out people who tell you just because they aren't cold it means you are just "oversensitive", because they are uninformed and believe they are helpful.

3. Except when sleeping, I always wear 3 shirts to keep my core temperature even. For example: a short sleeve shirt always has a tank top or something like it underneath. Then I either wear or bring a light sweater or jacket. My rule: undershirt, over shirt, jacket. It may be 100 degrees outside, but transitioning into an air-conditioned environment can trigger a Raynaud's attack. Bringing along a third layer helps prevent an attack. I love wearing a thin cotton long sleeve shirt underneath a cute short sleeve. I can wear it with shorts or long pants. I also use a thin cotton long sleeve under casual sundresses with some converse or cute sneakers. It gives me an excuse to wear socks. I notice when my feet are warm, my core temperature stays consistent.

5. If I have a Raynaud's attack and have no other options, a quick way to warm my hands is to (icky warning) put my hands under my armpits (over clothing), or even better, someone else's (They are usually warmer)

6. When having a Raynaud's attack, warm water can help, but I tend to make it too hot which can cause further tissue damage, so be careful.

7. Massages help. Massage Envy is very affordable and their therapists are well trained. Never be afraid to ask about a therapist's experience. ALWAYS observe their cleanliness practices and don't be afraid to ask them about it. Let them know if you are on immunosuppressant drugs.

8. Weekly manicures and monthly pedicures are awesome. Never ever go to a "discount" or nail place, especially if it looks like an assembly line. You will get an infection in these places. Keep in mind, just because a salon may charge more doesn't always mean they are consistent with cleanliness practices. Ask and observe. Some high end salons have memberships or work out deals with frequent patrons. Don't be afraid to ask, because everyone has to live on a budget these days. Always let your nail technician know about your circulation problem and if you are on immunosuppressant drugs. The massage does help quite a bit. If someone ever pulls out a razor and tries to "trim your calluses" with it, always say no and report them to consumer affairs. They are illegal to use in salons. A pumice stone or a file is the only thing needed to soften calluses in a salon.

9. Find a good podiatrist. They are great for keeping calluses under control and the only ones that should ever use a razor to trim back calluses.

10. Make sure your shoes are supportive and comfortable. I have no fat pads on the bottoms of my feet. I even have to wear shoes in the shower. If you notice pain when you walk, ask your doctor or podiatrist about custom made inserts. I haven't tried the Dr. Scholls in the drug store, but I bet that would be an affordable solution if not covered by insurance.

11. Occupational therapists can be helpful. Beware of being treated like a carpal tunnel patient. I had good insurance at one time (I now have Medicare and veteran's healthcare) and a private OT chain treated me like a cash cow. It wasn't the therapist, it was the business office. I learned a lot from my 1st OT in 1996 after my digital sympathectomy.

12. Digital sympathectomy. In 1996, Viagra was not available, so a digital sympathectomy seemed like a good idea at the time. There are so many vasodilators available these days, surgical sympathectomy are needed less. Today, I take Viagra 4xs a day, plus niphedepine once a day. These meds can cause headaches because of the rush of blood flow to the brain. I have some coffee in the morning to keep that under control. My doctor knows about it.

14. Last but not least, the very best thing that helps keep my Raynaud's in check is exercise. If you can squeeze in just 5 or 10 minutes of constant movement a day, you will notice a difference. I have. I tried to commit to doing yoga every day, but found it difficult to fit it into my schedule. Sometimes I just put on some music and dance for one or 2 songs and that movement help get blood to tips of my fingers and toes. I’m a terrible dancer, but my 7 year old son and I do a little boogie after he gets dressed in the morning before school. When my son's not here, my dogs will at least keep me company. They look at me like I'm crazy, but they can keep a secret. I have progressed from planning to exercise and never fallowing through to adding 5 minutes of it to my day. I have started going to the YMCA when they have things like kids cardio or kids zumba. My son has some fun while I walk on the treadmill.

15. If your feet get cold quickly and are sensitive to the surface of the bottom of the pool or wherever you swim, don't be afraid to wear some shoes. Aqua socks are useless to me because the bottoms of my feet are just bones with no cushion. TEVA makes a great sandal made to wear in and out of the water, and they look good too. It takes some getting used to swimming with them on, but the injury prevention is worth it. I love mine. I even use them in the hot tub.

16. Kama Sutra Oil is the only thing that keeps my the skin on my hands and from cracking. I use their Sweet Almond Oil. Not just for hot monkey love.

Representatives Argument Lacking.

“The Troops Come First” says REP Mike Pearce R-Indiana on the House Floor today.

I'm watching the House debate on C-Span. I hear, "We can fund the troops." Maybe it's me, but that statement just feels unfinished. Allow to me to add what they are leaving out.

We can fund our troops by cutting WIC. A service many of the E-1, E-2, E-3 and E-4 families use.

We can fund our troops by cutting costs to Veteran’s Benefits. The troops will one day be Veterans and have family members who use Veteran’s Benefits for their healthcare.

We can fund our troops by cutting education. Many troops have children who receive public education.

We can fund the troops by cutting regulation for clean water, safe food and medications. Many families of troops drink water, eat and take medications.

We can fund our troops by cutting Social Security, a service that all troops pay into, and their family members use. (“removing 66% of seniors off Medicare” Rep. Sheila Jackson Lee)

This does not feel like they wish to take care of the troops. Their argument would be solid if the troops did not have families or loved ones. They are leaving out those the Troops think about while they are away from their families and loved ones. If one were to really care about the troops,they would fight for things that matter to the troops in addition to their paychecks, which help- but are just a part of the picture.

This is what I have so far. Please join me in the debate here or on Twitter.

Thank you for reading.

Talk to Your Elected Representatives

I posted an article at But You Don'tLook Sick.com April 2. I got many great responses about those struggling on SSi or trying to get it. I spent this morning on Twitter sending copies of my article to elected officials because I want our voices heard. If you feel strongly and can, please take some time to contact your elected officials and tell them how you feel about these cuts to Medicare and Social Security. Here's a list of REPs:
Contact elected officials

Here's a link to my post:
Paying People to Stay Home

If we don't speak up, who will?
Have a great day everyone and thanks for reading.

Sjodren's and Scleroderma

This post is not to judge what Marilyn Leisz knew or didn’t know it's a great opportunity to talk about Scleroderma.

Marilyn Leisz was interviewed on The Today Show. She had eye surgery and cannot close them completely. Sound familiar? If not, allow me to introduce you to Sjodren's Syndrome. Sjodren's Syndrome itself is an autoimmune disease. It was unclear to me if the two exist as separate diseases or underneath the umbrella of Scleroderma symptoms. (If anyone can clear my confusion, please comment) The "hallmark Symptoms" are dry eyes and dry mouth. Patients with Scleroderma have dry eyes and dry mouth because of the free facelift and nose job. Their eyes do not close all the way when they blink or sleep. It's tough to manage. I watched Marilyn Leisz's eyes as she spoke and it made my eyes hurt. You could see the unconscious struggle her eyes were making to close.

I had to make this short today, but I wanted to get this out. Check out the links, watch the Today Show clip and learn more about the symptoms of Scleroderma and Sjodren's.

Thank you for reading and have a great Friday!
Karen
For more Info:
Sjodren's Syndrome
The Scleroderma Research Foundation
The Scleroderma Foundation

Living With Fire Marshal Bill (AKA Metaphor Much?)

Laugh at what scares you; it will only make you stronger. Let me show you something…

For those of you unfamiliar with Fire Marshall Bill, let’s get you up to speed. A long time ago, George Bush Sr. was president, JLo was a "Fly Girl" and Jamie Foxx showed us the only way to snap on the show “In Living Color"- the show where everyone was equally kind. Jim Carrey was also a member of the cast. Out of his many characters my favorite is Fire Marshall Bill.

Fire Marshall Bill could easily pass for a Scleroderma patient with his bird like features. His burn scars are very similar to the facial tightening caused by that disease. I like to call it the free facelift and nose job, similar to a gift with purchase, but I digress. Fire Marshall Bill would share his vast knowledge of fire safety with anyone who would listen and always absolutely free.

What does this have to do with Scleroderma or any autoimmune disease? Watch this video of Fire Marshall Bill, and then continue reading.
Click Here

Now, imagine some cells in your body with teeny tiny Fire Marshal Bill faces and even tinier bottles of lighter fluid messing with mitochondria and lighting cell walls on fire without prejudice. Cells creating mass chaos and destruction all in the name of safety. Damn those confused cells of an autoimmune disease! Okay, calm down. Flare ups will happen. So when we can’t get the match out of Fire Marshall Bill’s hand, we just have to ride it out and then find ourselves a hot firefighter with a blanket and some coco. Remember to get some rest. One needs to keep a close eye on that bull in a china shop with flame-throwing hooves.
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I'm interested to read comments or opinions. And remember to laugh at what scares you; it will only make you stronger. Oh, and beer makes everyone else beautiful.

Get some Humor in Your Reality.

My sinuses are full and I'm exhausted. Mustering energy to go get antibiotics for my infected caverns in my skull. Instead of breaking to a Conway Twitty clip Family Guy style- (fuck it, I'm too tired to find the Conway Twitty Clip, just click here and pick one.) But if you feel like a good blog entry, allow me to steer you to reality in diagnosis.

If you don't follow Stephanie @bydls, check out her latest blog entry. She will get her funny in your reality.

Happy Larger Than Ever in 18 Years Moon Day!

If you have some gently used shoes to get rid of, go check out soles 4 souls taking shoe donations for Japan. Put the help back in feeling helpless.

Cheers,
Karen

My Subconscious, Is It Really A Place One Should Visit?

I was up at 2:55am this morning. I went back to bed after an hour. I should've made coffee and stayed up. I fell back to sleep and had the strangest dream. I was living in a big house with my ex-husband. In my dream I was delivered a ceiling fan and a coffin, both made by IKEA.

I removed the outer box of cardboard the coffin came in and marveled at the beautiful Teak wood box. I opened the lid and found a release button just beneath the lid handle. I pushed it with normal fingers (remember, this is a dream) the lid released from the hinges on the opposite side. I started pulling it toward me like those coffee tables that rise up to become giant TV trays. I continued to pull the surface toward me, and then 4 legs released from the underside lid of the "coffin" and began to straighten. It started to stick and I walked around to the other side of the now "table". I saw a release lever and instinctively pulled it. The top detached from the rest of the unit. The top of what was a coffin stood alone as a beautiful teak desk. A coffin only has one use, but a coffin that converted into a desk- that's just plain genius. Thank you IKEA!" I was so dumbfounded; I failed to notice ornate carvings that resembled hieroglyphics around the edge. I looked down at what would've been the bed of the coffin and saw the same ornate carvings but the bed was replaced by what appeared to be bookshelves.

In front of me stood a desk with one drawer in the center of the carvings. I opened it and found a laptop computer. I quickly went into a nearby closet and pulled out a comfortable office chair I had apparently been saving for such an occasion.

Then, my alarm went off and I woke up to three dogs giving me the stink eye. They wanted to go to the park, and they wanted to go now.

So, what was this post about? Do I think I’m going to die because I ordered a dual-use coffin from IKEA? Am I somehow willing the Universe to send me a new laptop and desk? Maybe, it’s not like I’d say no to it. Could it be an escape my subconscious is attempting to create because while I was up for an hour I watched the news and it was so packed with despair my brain wanted to make me feel better with a new desk and laptop? Maybe. What’s the deal with IKEA? I’ve never been to an IKEA store. Does this mean I need to go visit one? What became of the ceiling fan? Why do I even care? Anyone have comments or interpretations?

On a side note: My ex husband did appear in my dream but I have seemed to block that part out because I can’t remember what exactly happened. I just remember he was outside the house.

So, what’s new with you?

A Quick Word about Duloxetine.

I have been taking Duloxetine for more than 3 years. I ran out once and had to wait a week for a prescription refill. During that week I had the usual withdrawal symptoms such as "brain zaps" or lack of concentration, but overall I felt awful. I think a great deal of my depression is related to pain. Before taking Duloxetine, I started taking 2 vicodin every morning and after doing so, I felt like showering and getting dressed was somehow easier. I was more productive on days I took vicodin in the morning. I noticed an even bigger improvement when I started taking the Duloxetine. Now I use Vicodin more of an as needed basis, which is better for my liver.

When I read the PubMed posted on Twitter by @fibroaction, I was happy to read “In addition, the efficacy of Duloxetine was found to be due to direct effects on pain symptoms rather than secondary to improvements in depression or anxiety." It's tough to just "walk off" chronic pain at such high levels.

It's good to see other patients will benefit from this pain relieving benefit and I am not imagining things. Sometimes pain is so frequent and intense, it really feels like I'm crazy. I may be a mental patient with depression, but I fell less like a nut today.

"So Now Sweet Sixteen's Turned Thirty One"~Bob Segar

Change that 31 to 40 and that’s me. In 1994 I was 23, recently honorably discharged from the Navy. I was full of ambition training for softball, found work waiting tables, Mobile Disc Jockey (picture) and a beer cart girl with an ass so perfect you could bounce a quarter off of it. I had just moved to Wisconsin and I was waiting for my freshman year of college to start. No signs of my upcoming battle with Scleroderma and Sarcoidosis except for that tingling in my fingers, which was only a nuisance back then.

Fast forward to 2010, I’m walking on a treadmill because it hurts to run. I’m not fat, but my ass is no longer in its prime (and that’s being VERY kind). I start daydreaming about what had happened to that hot chick I used to be. My hands once beautiful and played Stairway to Heaven on my guitar, were now fist like because of their contracted tendons. I became sad about loosing that, but I think as we grow older, all of us long for the beauty of our youth.

As I grieved for the hot chick, I started thinking about how as hot as I was- how underdeveloped my brain was as age 23. My walk on stubled on one of those “If had I knon then what I know now” moments. I kept plugging away at the treadmill and then I had an idea. What if the hot chick wasn’t gone? Maybe I had just become so terrified by what had happened to my young body I just shriveled up inside in a futile escape attempt from the shell that was once my strong body. I suddenly realized I have been going about this all wrong. I had been working so hard on the outside; I forgot to take care of what was inside. I’m not saying I should just take a meditative pose and stay there. I’ve just decided to start working from the inside out, rather than the outside in. I have to accept myself as a work in progress, not incapable. I have obstacles, but I have to forgive myself when they cannot be overcome. I need to start hiking in the foothills rather than trying to conquer Mount Everest.

So maybe you can't bounce a quarter off my ass, but I'm still the hot chick from the inside out. We all have an inner hot chick (or dude), you just have to remember to look.