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.

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

Custody and Luaus

So a few weeks ago in mediation, my ex decided to try to get full custody of our 6 year old son. He told the mediator because of the severe contractures of my fingers, he felt I could not take care of our son. He could provide no conclusive evidence as to why other than, "because I say so". He managed to make the mediator angry, to my amusement (later). So a judge ruled in my favor for joint custody one week after mediation. My ex apologized on the way out of court, not to his credit- just to my amusement. So that's that.

On to a Mother-Son Luau at my son's school tonight. I'm wearing short sleeves and I am very self conscious about it. My hands look like out of place drumsticks on to end of my arms. If it was any other event, I would put a long sleeved t-shirt under my dress on, but what kind of chicken shit would I be wearing a long-sleeved shirt to a luau? That's no example to set for my son, right? So, despite my groans about it, I'm just going to go for it. For the record, I really, really don't want to. I feel like I'm jumping off some cliff all in spite of my own vanity.

Left Behind

My train of though left without me this morning. So, I thought I would use this time to post some helpful links for Scleroderma.

Scleroderma.org

Become a friend to The Scleroderma Founadtion on Facebook

Scleroderma on FaceBook

There is a great tip on FB about Raynaud's and making meatloaf.

So check it out, learn something and have a great Monday!
-
Karen

PS: Behind on Christmas shopping? Shop at Avon Online and have it sent to you in days. (Spa bills people:-)