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.

Do you remember where you were, when you found, Nirvana?

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 sound of the song,  “Jump! Jump! Jump!” seeping in from the outside that was the norm on those Bahrain nights.   It was just like lunchtime at the local pub. Suddenly, I heard this wonderful sound coming from the TV over the bar across the room. It was  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 would hear no sound as beautiful years later, when I first heard the sound of my son’s laughter.  (Okay, let’s not get carried away here.    But that was poetic.  I dare you to tell me it’s not.)

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 say hat Nirvana’s music,  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 delivering 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 those days gone by, when I had hands that could make a chord on the fret board of a guitar.

It’s a little familiar 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  I’m going to share Nirvana with my son. Here we are now, entertain us.

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

Observations and Musings as a Guest of “Hotel” Veteran’s Hospital

August 17, 2011
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.

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.

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 ofwww.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 onFace 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.

My Remicade Infusion Cost $22,000 in 2007

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.