Wound care is not just a scleroderma thing. I was recently at a social gathering and was summoned to a conversation about wound care. This is what we talked about.
Short video: here. Below are some suggestions and links.
Not a Doctor
I am not a doctor and have no medical training. I am sharing anecdotal stories about what has or has not worked for me. For medical advice, please get in touch with your physician.
When in Rome, do as the Romans do.
It’s tough to explain the evolution of wounds. When I call the nurse line at the VA to ask advise, nurses easily walk me through my description. In my doctor’s office, I have less time. And yes, they can see my wounds, but sometimes things happen and go away before I see a doctor. I try to take pictures. They are great for reference. Being able to use terms helps.
Here’s what being Roman did for me:
- It made me a better communicator. Going in, knowing how to describe my symptoms, or being able to name which knuckle is infected by using proper labels for joints can save time.
- It also made me a better listener. Listening carefully and looking for medical terms helps me stay calm. It helps me process things better when I feel emotionally overwhelmed—that takes practice.
- Decreased confusion: I once referred to a shoulder muscle that starts with an “L” as my labia. Not the best conversation on my speakerphone at Applebee’s.
Wound Cleaning
When it’s time to clean my wound, I use baby shampoo, or a spray recommended or prescribed by my wound care specialist. I use a non-snagging gauze and pat the wound dry.
To Debride or Not to Debride?
Now there’s a shitty question. Debridement (duh·breed·muhnt) is almost as fun as shoving thumbtacks under my nails. Debridement is usually the surgical removal of lacerated, devitalized, or contaminated tissue. (Devitalized is just a pretty word for dead.)
By surgical, they mean a procedure done in a doctor’s office. I am wide awake for mine, and the only thing used to numb is liquid lidocaine. It’s as weak as it sounds. Wound debridement is very painful. When I had calcinosis in my leg for one year, I saw a good wound care specialist, it decreased my overall pain after every visit.
With scleroderma and other vascular degenerative conditions, chunks of skin die. These small chunks are not rotted; they become dead skin and fall off. But if deep, they can snag and cause pain. I learned at a very early time in my illness that when that happens, I need to finish the job. Before I knew about wound care specialists, I did what I like to call “Home Surgery.” Do not try this at home.
Is Debridement Painful?
No, it’s mother fucking painful. My pain level sometimes feels like an 11 during debridement, but it quickly disappears once it’s over. Sometimes, I’m sore afterward, or I need a nap after the adrenaline high, or apologies all around the room for my foul language.
Avoid Medical Mayhem
I’ve had wounds on my hands for a few weeks now. Debridement on my hands is extremely painful compared to when I had wound care on my leg. At this last wound care appointment, a nurse tried to pack my wound with Prisma. I asked her not to because all I could think about was the pain I felt when I removed my Prisma bandages. Well, the joke is on me. When removing the Prisma, if I add water, it breaks down like cotton candy and removes easily. But even the thought of pain can sometimes cloud my judgement.
The problem was that my wound needed to be packed with Prisma in order to heal properly, but by refusing it, I made it worse. When I took off my bandage that night, I had a nice layer of biofilm. Beneath that was some lovely yellow puss. Even after soaking, devitalized cells stayed attached, and now I have to see my wound care specialists re-scrape it. My lesson: When my doctor tells me to pack my wounds, do as she says. I delayed my healing by one week.
Back to Wound Care
It is important to see a doctor anytime there is an unhealing wound. If you are unable to see a wound care physician right away due to consult issues or insurance delays, here is a list of supplies I use for difficult-to-manage wounds. Everything I link here is covered by Medicare, except for coban & baby shampoo.
1. Baby shampoo: to clean my wounds. I dab a drop or two of baby shampoo on a wet cotton ball , or non-snagging gauze or gently clean with my fingers and rinse.
2. Silicone Foam Dressing : It’s great for wounds that will ooze and wounds that don’t. It also sticks to the wound without hurting when removed. I cut it into pieces for small wounds. Usually, I use an antimicrobial silver wound dressing.
3. Gauze Pads: I am addicted to Band-Aid brand non-stick gauze. It’s the most bang for my buck and provides an absorbant cousion over my wounds. I use these instead of silicone foam dressing sometimes.
4. Wound retention tape: It sticks almost anywhere, removes without taking skin with it, and doesn’t iritate my skin.
5. Coban: It’s like an Ace bandage that sticks to itself. Great for when low on tape or provide extra protection. Caution, Coban should be wrapped loosely. Its use is mainly for comression, but can be made loose by stretching and wrapping loosely. I get the 1″ or 2″. It’s easier to apply.
The best way to learn to use it is with instruction from your wound care specialist and then following their directions. When I wait to see my wound care specialist, I use those supplies to keep it from getting even worse. It can seem like a lot, but that extra time spent protecting can speed up healing time and reduce chance of infection.
Good luck, and if you’d like to share your experience, please do in the comments.
We all have a friend who starts talking about something and then takes us somewhere we had no idea we were going. It’s me. Hi, I’m Karen. This post is all over the place and I’m taking suggestions.
My goal with the blog and now my podcast- I have yet to update – is to bring chronic illness awareness outside the scleroderma community, but there’s more to it. After twenty-seven years, I finally understand why I am so pissed off about American Healthcare. American Healthcare is the problem.
Since being diagnosed with my second chronic illness, I realized scleroderma was only one of my issues. It’s never just scleroderma.
But first, scleroderma. Like many with chronic illnesses, I felt isolated because I knew no one else with scleroderma when I was diagnosed. I used to get upset when friends and family went to cancer fundraisers, but never my scleroderma walks.
It’s not that they didn’t like me. It’s that scleroderma had never touched their lives on a daily basis like their loved one with cancer or whatever wasn’t scleroderma. So I began to look for things I have in common with other people or illnesses. The one thing I found constant in everyone is that we all face challenges. One challenge is not more valid than another. It’s not a contest. Also, when there are breakthroughs in conditions or diseases other than mine, this elevates care for all.
Everyone knows about cancer. But did you know that cancer medications like Ofev for lung cancer treat pulmonary fibrosis in scleroderma? Do you know how they found out? Because when a drug is developed and approved by the FDA, the research doesn’t stop there. It continues. Things change as more information is studied, and then studies are studied and repeated.
I have pulmonary fibrosis due to scleroderma. The good news is that in the research of medication to treat lung cancer, someone noticed some benefits for individuals with pulmonary fibrosis. Recently, that medication was approved to treat and prevent pulmonary fibrosis with scleroderma by the FDA.
The situation I faced was not unlike what all Americans faced during the COVID vaccine roll-out. Is the benefit worth the risk?
Now, like the covid vaccine, Ofev is relatively new. Both medications were not created overnight. Although it felt like it with the covid vaccine, it was not created overnight. Here’s why: In my case, I had my radar up because I knew that someday my lungs would harden enough for me to need supplemental oxygen or a lung transplant. So when my prescribing physician told me the FDA approved something for pulmonary fibrosis with scleroderma, I wanted it yesterday.
With the Covid vaccine, there were already vaccines available for the viruses like Covid. Once we were able to genetically code it (and by we, I mean researchers doing actual research. not blog comparison), it was tested, approved, and tested more and then approved for the population by the FDA. No one pulled this vaccine out of their ass. Just like no one pulled Ofev out of their ass.
With Ofev, the side effects and complications risks were present, and I had to learn how to manage them so my body could continue to tolerate prolonged use. Was I going to try it, even though it’s relatively new but has been deemed safe by the FDA? Fuck yes. Because I am lucky to have lived long enough to stop the hardening of my lungs.
The risk of side effects and even death, is worth it to avoid more hardening of my lungs. This is an opportunity to keep my lungs functioning without supplemental oxygen or the need for a lung transplant.
So if you come at me with the whole, Covid vaccine is new, and you’re declining your vaccination because some guy with no medical training tells you it’s not studied enough, I will have to tell you to fuck yourself. That’s how medicine works, asshole.
Those who refuse to get vaccinated for anything that benefits public health (if your health allows you to be vaccinated), you put millions of other Americans, including me, at risk of dying. Due to the way medical necessities are handled in the United States, many freedoms are already taken away from disabled and chronically ill Americans.
So we’re restricted by the shitty American healthcare system, and then there are self-righteous anti-vaxxers restricting us even more.
We already receive the bare minimum of assistance that helps us thrive in our community. We are at the mercy of our caregivers, the for-profit companies that pay shareholders instead of staffing best for patients. We are forced to wait for life-sustaining care or given equipment that crates more problems because everything is cost over convenience.
I honestly don’t know my mission for this blog yet. But I know that Americans with disabilities and chronic illnesses are treated like shit here in the United States. And I’m fucking tired of it. Non-profit foundations compete for funds. Every year chronic illness patients have to travel to the capital of our nation and beg our representatives to help us get better research and care. Every time I see it, I admire the struggle these patients have to go through so whatever representative can have a photo opp saying, “See, I do care.” And then the same representatives vote against assistance programs after the photo opp. I am tired of seeing chronic illness patients and disabled Americans struggle needlessly.
I’m trying to figure out a way to show Americans who believe that Social Security and Medicare should be removed. That is a stupid idea. We need to make it better. And recent COLA increases are a start. When someone’s evaluated, it’s like a guilty until proven innocent thing. It isn’t enough to have the diagnosis; we must live at the lowest rung of the economic ladder.
I am lucky. I have veterans benefits in addition to Social Security and Medicare. People have told me that I should get the best because I’m a veteran. But you know, everyone who serves their country knows someone who has to choose between medicine, food, and rent. All Americans deserve the best healthcare. The reason we all don’t have it is because insurance companies can afford to pay lobbyists to keep it that way. It’s probably more complicated, but can we all start thinking about this?
The only suggestion I have right now is to look at who you’re voting for.
Hello! It’s been a while since I’ve posted, and I’ll catch you all up, but first, I see a lot of new readers so here is a little backstory. Those of you returning, welcome back! If you’d like to, skip the backstory, scroll down to Medical Mayhem.
In 1994, I was diagnosed with scleroderma, then in 2007 with sarcoidosis- that’s when I discovered chronic illnesses are just like potato chips: you’re going to have more than one.
After some harrowing infections, hospital stays, and new complications, I learned that if I could live through the worst of a complication, whatever I am going through is worth the fight because of what awaits me on the other side: More time with friends and family.
I have never called my diagnosis terminal. There have been some close calls and a few scares- not all related to my chronic illnesses. There are so many other ways to die.
Through the years, I learned to advocate for myself using humor. It started out by learning to explain scleroderma without making people cry. Today, most people I run into have heard of scleroderma thanks to Bob Saget and his work raising awareness and funds for a cure for the Scleroderma Research Foundation. But back in 1994, most people hadn’t heard of it, and those who did know, only knew of it as a death sentence. I am living proof that better treatments become available with time.
When my hands began to change, people asked more questions. I found that if I could bring in some humor, it kept people focused on what scleroderma was, instead of pitying me. Eventually, I used humor to teach doctors, nurses and anyone whomever would listen, about scleroderma.
I also have a little privilege as a veteran. Most people with scleroderma & sarcoidosis did not serve in the military. I did, and I have some badass benefits. I never have to choose between rent, medication or food like most people on Medicare and Social Security Disability. I have experience with private insurance before and after preexisting conditions were denied care, in addition to Medicare and Veterans healthcare.
I had health insurance from 2000 to 2008, used with my VA benefits. My current care is provided for free, and the rest of my life is through the VA. Now, instead of health insurance, I use Medicare to supplement my veterans care. My scleroderma & sarcoidosis expert is not part of the VA, so I use medicare to see him. He then prescribes medication and treatment. The rheumatologists at the VA and my outside specialists work together as a team.
Every veteran’s hospital is connected to a medical school which makes them teaching hospitals. My VA hospital works with UCLA, and my outside specialist is a UCLA faculty member. So my doctors from the VA have a relationship with my scleroderma specialist.
Medical Mayhem
I have been told many times by people with different experiences than mine that VAs should be privatized or they are not as good as private hospitals. Not every hospital is equal; however, VA healthcare makes as many mistakes as private healthcare.
As far as mistakes, the ONLY difference between VA Healthcare and private healthcare is a public relations budget. Insurance paid facilities with companies like United Healthcare, Kaiser, or Blue Shield, well we’re going to hear more about “thriving” than all of those mishaps and mistakes thanks to a giant advertising and PR budget. So when something goes wrong at the VA, we only hear about that.
Here is how the clinics at my VA are set up: A doctor who is learning a specialty by practicing is called a fellow. Fellowes are supervised by attending physicians, who are practicing physicians and members of UCLA Faculty. Fellowes see the patients, assess them and bring in the attending physician at the end of the appointment.
Every time I work with a new fellow, they assess me. I listen to what they have to say, and if it conflicts with past treatment, I kindly explain to them how my care works.
For example, I met one fellow who would not prescribe opiates to anyone. She was very new to rheumatology. Anyone who’s ever asked for an opioid, knows what it’s like to be viewed as a drug addict. So when I explained how sometimes I need to “reset” my pain levels by taking Norco for one day or two, then add motrin and tylenol and titrate down to zero. In other words, I need a fucking break.
Pain is part of aging. People with chronic illnesses just experience pain at a younger age and at level eleven. Even after explaining I’ve been doing this for 27 years, and it’s in my chart, she still refused to prescribe them. It used to make me very upset, but with time, I learned that when I don’t agree with a fellow, I wait to speak to the attending. I asked the fellow to speak to her attending about it.
I went home from my appointment with Norco. My “secret” is that I have been managing pain for twenty-seven years. I know the value of Tylenol and Motrin, and I know from experience at what pain level I need a break to rest without any pain, and then I’m good. The attending physicians I have been working with for years know this.
I get that being new to a chronic illness and reading that even after twenty-seven years, I would still need to teach doctors about it doesn’t sound very reassuring, but it isn’t to me. I feel like every doctor, nurse, and medical provider I can teach about my issues, will help future scleroderma patients.
There is no cure for most chronic illnesses, but I have benefitted from new treatments exponentially for the last three decades. If someone else is diagnosed with scleroderma today with my symptoms, they will avoid damage and complications I had. I’m no saint, it does suck, but the opportunity to help others with my experience is fulfilling. It helps me power through things and gives me hope that I will continue to lead a long and fulfilling life.
