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.