Of course I wish scleroderma got the awareness and funds cancer “enjoys”. I’m not angry and I’m going to tell you why. I am also going to offer suggestions to help you educate health care providers and the general public by recognition and comparison.
Why is cancer so infuriating to patients with rare diseases? Well, obviously, people have heard of cancer. It occurs more in the general population. I have seen many statuses and comments sharing frustration and anger about how many other diseases get more publicity and funding than #scleroderma research. Since 1994, I too have been frustrated about how everyone pays more attention to cancer. In 1999, I thought that I would rather have #cancer, because at least most doctors know what cancer is, and how to treat it. My frustration eventually turned into action.
I decided to learn more about cancer to see if there were similarities I could compare to scleroderma and share using both cancer and scleroderma as search words. What I found and concluded, surprised me.
I made some interesting discoveries. Cancer research and patient care, have provided caregiver models, and education programs. Some cancer drugs are used in lower doses to slow down the disease process in autoimmune diseases by immuno-suppression, like methotrexate.
Cancer research has also brought us the infusion clinic. Because I have infusions of a powerful immune suppressant drug every eight weeks to accompany my dose of methotrexate, as a non-cancer patient, I still benefited from cancer research and patient care. More people get cancer, and many have difficulty when IV’s are needed. Not only did I get the best nurses for difficult IV’s, I also received education from these nurses about how I could benefit from a power-port.
Okay, what were we taking about?
Cancer research has helped lead the way in the care of chronically ill patients. Yes, scleroderma and other patients with other illnesses, have benefited from treatment and care of cancer patients. But wait, cancer isn’t the only condition that helped improve patient care. How about the care of individuals who are paralyzed by stroke or injury? There’s some rehab crossover. How about Diabetes? Yep, the care of diabetes patients has benefited many a scleroderma patient when it comes to Raynaud’s in feet. It makes it easier to get insurance to cover orthodontic inserts, because the diabetes is familiar and when a podiatrist says, “We see this in the feet of diabetics, and treat it the same.” Of course there are many differences, but by pointing out similarities in a rare illness to one that’s familiar, it makes it easier for the person you are teaching to learn and recall. General practitioners know that poor circulation causes infections and amputations of limbs. If you are the scleroderma patient and a doctor recognizes a symptom from an illness they know, about that is the scleroderma patient’s opportunity to compare scleroderma (or insert illness here) the similarities to scleroderma. That will help that doctor recall scleroderma from the Rolodex# in their brain.
Here is one way I use recognition:
My quick answer for decades to the question, “What is Scleroderma?”
My short answer, ” Scleroderma is an autoimmune disease in the same family as Lupus & Rheumatoid Arthritis, except it affects connective tissue. You know how there are different types of cancer, there are different types of autoimmune diseases.”
I know, it’s not all that short, but it’s as short as I can get. Recognition of Lupus or RA helps. If someone hasn’t heard of those, I add a blurb about diabetes. I will say something like this:
“You’ve heard about diabetes, right? Diabetes is also considered an autoimmune disease. “
Most people are surprised by that information. They recognize diabetes, and now you’ve connected scleroderma to diabetes. Just like throat cancer is different
In other words, those who named cancer did well for marketing purposes. No matter what kind of cancer one has, everyone knows about cancer.
So when you see all the pinking going on and awareness campaigns of cancer , or more well known causes year-round, do some research. Find similarities between the progress in patient care and how they have benefited scleroderma patients, in small ways or tremendously. When you do something like that, it also gives you a way to join the conversation about a more well-know disease and even help other causes by sharing their fundraising information.
Now you’re probably thinking, “Did Karen just say I should share information about more popular causes than my own?” Yeah, I am and here’s why: Research breakthroughs and progress in other illnesses, benefits research in other areas. One example is Benalysta for Lupus. Benlysta was approved by the FDA for the treatment of Lupus. Oh wait, it was THE first medication FDA approved for treating Lupus. As I write this, there is research being done to find out if Benlysta can be used to effectively treat scleroderma. (See what I did there)
Another idea is a compare and contrast. Remember my post about how a woman I spoke with at Social Security who thought scleroderma was a skin condition? Well, find a skin condition, learn about it and understand the similarities and difference, so that you can have a better reply to the “skin condition” thing.
Anger from cancer getting more attention is definitely warranted, but based on my experience, acting in anger is not the best idea. I think as a community of scleroderma patients, if we can take the conversation outside the scleroderma community by relating experiences in common with patients of other illness, we can get the word out faster. A rising tide lifts all boats. Research progress helps the illness community over all. We can go back and forth for days about how one is worse than the other, but all illnesses suck. Awareness is useless if we don’t teach anything along with it. And teaching does not include photographs for shock value, but that’s a whole other post.
Thanks for reading! -K
**At the time, I lived in Murrieta California and Loma Linda was my Veterans Healthcare center.
** When pain or anxiety hit me, I am not shy about asking for them, in spite of the stigma of “depending one them”. Pain medication lowers my anxiety, because it takes away or dulls it to make it tolerable. High anxiety makes my pain worse as well. I have often been relived of joint pain and swelling pain, with anxiety medication, because I have a diagnosis of major depression and anxiety. Many patients can attest to stress making symptoms worse. I ask for these things with the risk of stigma in the back of my mind.
*** Before I stopped my doctor, I assessed his surroundings and mannerisms, to determine he was not rushing to a crisis. Also, if he was on his way to a crisis, he would not have stopped to speak with me. When I am in pain, or during a crisis situation, I have an unusually clear head. It came from two decades of experience. It may sound rediculous that someone in so much pain, has such a cool head, but please keep in mind I have 20 years of advocating for myself. I have driven hours for care while in excruciating pain. And when I say I have driven hours, I mean I was driving the vehicle. I have learned calming techniques to be able to speak on my behalf. I will admit though, the longer the problem continues, the more the F bombs fly.
#If you don’t know what a Rolodex is, Google it you young whippersnapper. And get off my lawn!
There is an article about a woman with scleroderma in the United Kingdom all over Facebook and too many social networks to list here. I have a few comments to make. Her methods of skin care work for her and kudos to her for having the time and resources to have a full body paraffin bath every day, but I have a few comments and some alternatives.
Oil feels nice, but the type of oil used may create more work.
Applying oil can appear to be helpful, but many oil based products only coat, and do not penetrate to moisturize skin, especially petroleum based products. As someone who has used olive oil, Kama Sutra oil and too many moisturizers to name here, I can say honestly that oil coats the skin, leaves marks everywhere and leaves (me, it may vary for others) a dry skin surface in about 15 minutes. Many products claim to have “essential oils”, but if they come in a plastic container, they are not true essential oils.
Undiluted essential oils should only be stored in glass containers, because a true essential oil will may break down the plastic. The right essential oil can nourish moisture starved skin because it will penetrate, not coat. Essential oils can appear more expensive, but you need less of the product. To find the best essential oil for you, don’t be shy about asking for samples or asking for a low priced sample to take home and try a few days.
Essential oils are not your only option.
A great non-petroleum based cream or lotion works well if you can find one. I have had great luck with Aveeno Moisturizing cream oil with sweet almond oil and Eucerin. Currently, I use Votre Vu’s Snap Dragon on my body and their hand cream Duette for my hands because I love it, and I sell it (for full disclosure) so I get a great deal on it. If you have something that works, don’t go searching for an essential oil. (If it ain’t broke, don’t fix it.)
Ahhh, Paraffin. It is nice…
Paraffin does work, but as a full body bath, the first thing I thought, (okay, second thing I thought…) was this sounds wonderful, but is an unrealistic and expensive option for most scleroderma patients. A simple hot bath with immediate application of a non-petroleum based moisturizer while wet, followed by stretching or assisted yoga (after drying off and dressed of course) will provide the same benefits. A hot bath will warm the muscles, making them easier to move, which is the objective of the paraffin bath. When I first started exercising again in 2005, I would take a shower before and after. Warming up those muscles before warming up, is good for body and mind.
The professional manicurist in me speaks up:
I have been working with paraffin since 1987. First as a manicurist, then as a scleroderma patient. A full body bath in paraffin really does sound awesome, but I would like to offer an alternative for 2 reasons.
1. Patients with raynaud’s have a bigger risk for burns with paraffin. If one with raynaud’s were to place their hands in a paraffin bath that was even slightly too hot, it can cause tissue damage to the extremity, going from extremely cold to hot. And because of impaired temperature sensation, a raynaud’s patient may not be able to detect the bath is too hot. Thermometors can fail.
2. Open sores. One must never use paraffin if there are any wounds because of risk of infection.
Tips for using a parrafin bath for patients with Raynaud’s:
1. Place hand in plastic paraffin bag, then dip bag into paraffin.
2. Scoop hot wax with hand using the bag as a barrier between hand, then turn bag inside out when removing from paraffin wax. (This will take practice. Don’t be discouraged by a little mess)
3. Now, you have a bag of wax and you can feel how hot the wax is through the plastic. Use your forearm or wrist to touch the outside of the bag to feel how hot the wax inside the bag is. If it is too hot for your forearm it is too hot for your hands, feet or whatever it is you are placing in the wax.
4. Once the wax feel cool enough to tolerate COMFORTABLY, place your hand inside the bag.
Never, EVER use paraffin wax when you have an open wound or pressure sore. Yes, even a paper cut. Don’t make me show you pictures of infected wounds- it’s nasty!
For more information:
Medscape detailed article: Musculoskeletal rehabilitation in the person with scleroderma.
Pub Med Abstract: Musculoskeletal rehabilitation in the person with scleroderma
To help fund research for scleroderma, visit: Bounce to a Cure
I’ve had a wound /ulcer /hole in my knuckle for a few weeks now. I had an upswing and it looked like it was going to close, but there is still some icky drainage going on, so I made an appointment to see my doctor to have it looked at today.
I have to say, the hole was huge two days ago, and now the hole is smaller surrounded by healthy tissue regrowing nicely. Inside the hole it’s just gross, but very clean and rarely oozing. With all the experience I do have as a wound care Jedi, I am not a doctor, or in other words: I still need to go before the Jedi Counsel.
For those of you experiencing ulcers from impact, calcinosis or Raynaud’s, I’ll post pictures of the wound progression in Pinterest. These wounds can be scary and insanely painful- I don’t have to tell you that. I want to post them so you know that you are not alone. When I got these back in 1996, not only could I not find anyone else who knew how to take are of them, I knew of no one else who had experienced the weirdness that is slow healing and puss as something that occurs normally. Not that these wounds are normal. I do have a choice to avoid them. I live alone and I don;t like asking for help and I love to get out and do things. I am willing to risk infection and pain caused by a an impact injury, than sit still. Playing with my son and having adventures that risk my bumping my hands into something or by unpacking myself and having my home the way I want, outweighs the setback of wound care. I have accepted it as a very painful inconvenience. I get a sore, take care of it and roll with it as it heals. I can focus on how much it sucks, or I can tale care of the wound and focus on life around me. It took years for me to get here.
If you are new to these ulcers, learn to take care of them. Ask for a referral to a wound care specialist. If you are ever in a hospital, ask your nurses to see if they can score you some Medicpore tape, Colband and cause. Yes, stockpile and squirrel away. Never turn down free wound care supplies when you can get them. Saline solution is outstanding for rinsing wounds. Saline filled syringes can be reused to help rinse. In another post I will unpack my first aid kit, but for now you will have to live with a tease of a picture, but I need to get going. I am to go before the Jedi Counsel for guidance.
Have a great day everyone!
PS: instead of being shocked over breakfast by my waving my wounds n your face, you can to Pinterest and click to see them. They will be up Saturday, but connect with me on Pinterest if you happen to be there.
So, after further review of the budget, I had to stop maid service. It takes e a very long time to clean, but I decided if I tackle one cleaning job a day, I can stay on top of things. Yes, it is tough and time consuming, but only if I do it all in one day. I can’t believe I didn’t think of this sooner. I could have saved so much money! So today, I took on my first task; my closet and my bathroom.
I used to sit and dread cleaning. Not today. Just knowing I was only doing my closet and bathroom made my objective possible. I did it. I still felt energized, so I moved on to the laundry, but I didn’t get too involved. See, my old behavior would have been to keep going until I hurt myself or collapsed into a sweaty heap on my bed at the end of doing all my chores at once. That sounds like not such a bad thing, but that kind of behavior would result in the following day being immobile, in pain and grumpy. So, maybe my other bathroom is a mess, but that can wait until tomorrow. I can spend an hour or two, take my time and have the rest of the day to have fun.
Yes, I can do this. It will result in more pedicures and possibly a vacation. A real vacation, not a trip to a relative’s house. I mean a real vacation. Yes, I want to stay somewhere I can swim to the bar. Just because I can’t drink doesn’t mean I should give up on my dream.
Maybe not exactly this house sitting gig, but it does get me in the mood. Click here to enjoy Someplace tropical where I have to swim to the bar, with fewer banana hammocks and more board shorts.
Adapt, Overcome, Rinse, Repeat.
Not necessarily in that order.
Now that The Mighty Turtle has a renovated home, I would like to explain the goals and purpose of this website. Some of you remember it from back in the day as Scleroderma, Sarcoidosis and Box Wine. I still have the Facebook Page of the same name, but changed the blog name so it would be easier to remember. I picked “turtle” because turtles out lived the dinosaurs by adapting. They moved to the sea, learned that jellyfish are delicious, and know how to cruise The Gulf Stream like a champ on loose bed of kelp. The only thing anyone remembers from Scleroderma, Sarcoidosis and Box Wine is the “Box Wine” part. By the way, I stole the “Box Wine” idea after listening to hours of listening to The Stephanie Miller Show Podcast driving to and doctor’s appointments between LA, Riverside and home.
Overall it is a blog, but there are resources and a store as well as a useful resource about life as a member of the human race living with some chronic illnesses, being a parent and 100% service connected female veteran.
My diagnoses are Scleroderma, Sarcoidosis, Rheumatoid Arthritis, Depression and complicated damage like pulmonary fibrosis, barrat’s espohagus and Joe my God, the list ends here.
I write to raise awareness and hope to save others time by sharing about how I spun my own wheels. In addition to written posts, I have a video series called, Scleroderma on the Fly. This series consists of facts and helpful tips about scleroderma. Each video after Episode 1 will be two minutes or less and will cover only one topic. This is to provide a quick go to source thats easy to understand and easy to repeat. I want those who watch to walk away from each episode knowing the topic.
Feedback is always welcome. I especially need to know if there is something I talk about that does not translate or you as the reader or viewer need further explanation. I am my own editor. Of course I enjoy positive feedback, but critical feedback will only help me become a better messenger. If it’s the information I give is ever confusing, let me have it!
I support research and fundraising organizations I know about and find credible by sharing their information, donor pages and more. I am not connected to the organizations I endorse.
I write about current events as well as medical experience. There is more to life than our diagnoses. It took years of therapy for me to realize I was not my Scleroderma. I want to share that message. Though my opinions will be shared, the only thing we need to agree is that diseases like Scleroderma and Sarcoidosis need a cure and patients need better treatment while waiting for one. (I’m a little tire of waiting. Did someone just start playing Muzak?)
Thank you for taking the time to read about this website/blog. I hope you will find it a useful resource and share posts when you feel they are share-worthy. It doesn’t matter your diagnosis and this page is not just for patients. It is for patients and those who love and care about them. Coping is tough as both a patient and loved one. The greatest way to torture a person is to cause suffering to those they love the most. Not sure? Ask a parent. Diseases have symptoms in common. Coping is universal because we are in this together and we can help each other by learning from one another.
If you would like to be surprised about some weird things that MIGHT happen to you as a Scleroderma patient this post is not for you. In addition, if you are enjoying a meal or snack and are a bit squeamish, I recommend you finish eating before reading. You have been warned.
So, you have already experienced the biggest surprise of your life, you have Scleroderma. It was not much of a surprise something was wrong and there had to be a name for it. You just had no idea it would be something most people have never heard of, can define or pronounce properly. The good news is, if you like surprises, then Scleroderma is the gift that keeps on giving.
Please remember, I was diagnosed a long time ago. Back in those days, Pluto was still a planet, Seinfeld was new, and OJ had yet to make car chases a national pastime. The things that happened to me are based on medical treatment from that time period.
Thanks to non-profit organizations like the The Scleroderma Research Foundation and the Scleroderma Foundation and the research and education they fund, the condition I will be describing is treatable and preventable If things happen you can’t control, as they are will, remember one of the most helpful things you can do is remember that Scleroderma is tough, but learning to laugh at what scares you makes it easier and it will only make you stronger.
Raynaud’s Phenomenon: Surprise!
Normally, when we are cold, the muscles around our blood vessels gently contract and restrict blood flow to the extremities to preserve blood flow to vital organs. This response is controlled by the sympathetic nervous system known as part of a “fight or flight” response. Raynaud’s Phenomenon is when the muscles around the blood vessels respond to cold not by gently contracting, but by contracting so hard and fast, blood flow can be completely stopped in an extreme Raynaud’s attack. When I think of the muscles constricting my blood vessels, I think of Homer Simpson’s discipline technique with Bart that usually begin with, “Why you little…”. (Yes, I picture a tiny Homer Simpson choking my blood vessels with tiny four-fingered animated hands.)
With this natural response gone wild, your extremities will do some crazy things. For example, your fingers will begin to feel tingly and numb. Then they will turn red, white, and blue. It almost sounds patriotic, doesn’t it? I could say it makes you truly American, but Scleroderma has no international border. When blood is unable to get to the fingertips, skin cells begin to die, but before this happens, there are now medications available to open the blood vessels and bring blood to those malnourished cells. If this response does not respond to treatment or is allowed to progress untreated, sores will begin to appear. These sores can last for weeks or months depending on care, or just how stubborn the muscles are around those blood vessels.
Once those muscles around the blood vessels relax, the sores begin a slow healing process. Now here is the freaky part. After they heal, a scab of dry skin is left behind. The hard dry skin will snag, sometimes dislodging the hard dry skin and fall off and it won’t be painful. Most of the time, you won’t feel it unless it is still in the process of healing. Yes, I just told you a small dry chunk of skin will fall out of a once uber painful sore and you may, or may not feel it. The cells beneath the dry hunk of skin have blood flow and are growing in to fill the hole, pushing out the hunk of dry skin. When this hunk falls out, it will leave a gaping hole. You will be able to look inside a small hole I can only describe as looking like a nail taken from a wall. I have experienced sores that have left a hole in many a knuckle and fingertip big enough to put the tip of a screw in without touching the walls. Don’t worry, eventually, these holes close as the cells regrow tissue. (See picture)
Each of my knuckles has had 18 years of sores that have been open and healed. The number of sores I have had on this hand alone is in the hundreds. As you can see, the holes are gone and there is healthy tissue in its place. You will also notice there are healing wounds on my index finger knuckle (bottom of picture) and another on my pinky finger knuckle. These sores are impact wounds. Because of the claw-like deformity of my fingers, sometimes I get in my own way and bump into things. A long time ago, these wounds would have taken months to heal. The dry scabs still happen, but because of medication that keeps my Raynaud’s under control, my wounds heal much faster and the chunks of dry skin falling off happen less frequently. Because of the stability of my condition and my experience with wound care, these impact wounds take much less time to heal.
Now, you may be asking, “Karen, what is it you want me to take away from this surprise? This sounds insane.”
This may not be much of a surprise, but it won’t be the first time I’ve been thought of as insane or unstable. Please rest assured, I have been tested by more than a few psychiatrists and I’m coming up on my “Crystal” or 15 year anniversary in therapy. I have the documentation to prove I am quite stable. When it comes to Scleroderma, stick with me, you are in good hands.
I want you to take away two detailed important points about living with Raynaud’s:
1. Take care of yourself and take your medications as directed.
Reading about my experience with Raynaud’s and what it has done to my hands may be overwhelming to anyone who has it, but it is worth it. Here are some tips:
A. Keep your core warm. I have a three layer rule: Undershirt, overshirt and shell (something removeable like a cardigan or hoodie.) In extremely warm weather I still wear two shirts. (A bra does not count as a layer.) It helps when transitioning between extreme hot and cold. Outdoor to indoor air conditioning can trigger a Raynaud’s attack. This is where the shell comes in handy if the two layers do not help.
B. Stay away from caffeine. Caffeine is not your friend. Coffee is a harsh mistress. I am in no position to judge. Decaf or moderation helps.
C. Exercise. As much as you can, move. It gets your blood moving and opens blood vessels to get blood to those cells. Don’t beat yourself up if you are not very mobile. Talk to a physical or occupational therapist about exercise that will help with mobility of your fingers. The exercises they assign have an additional benefit of an increase of moving blood to those fingertips. If you are very mobile and you are not exercising, start. Find something you like to do and stick with it. You are more likely to stick with it if you enjoy it. The Wii Fit is a great place to start. It got me going and Jules herself is using it to get started.
2. Scleroderma is full of surprises. Don’t panic.
Parts will come and go. Most of the time, they grow back. Take care of yourself. You are not your disease. Find humor when you can. It will help distract your mind from your pain. It sounds impossible, but it is not. You will find strength you never imagined possible- and yes, it’s YOUR strength.