Oh, it’s not fine, Eczema Exposed.

By Selfish Mitch

Eczema Exposed “It’s Fine” Commercial

I’m linking to this commercial since they don’t have a share feature, probably because, as I’ve recently found, it’s being flamed on the internet. I’m not the only one that thinks it’s terrible.

It starts out with a young woman staring forlornly in a mirror in a tank top, scratching her red, patchy skin, cancelling plans on the phone and saying, “It’s just my eczema. It’s fine. It’s fine.”

Then we cut to a scene where she’s wearing a long sleeve shirt, maybe in her workplace or a library, itching again, and some dude looks at her with an expression that I read as “WTF,” but could be “Eww…” or “How you doin’, baby?” because I’m pretty bad at guessing what men are thinking. But she once again says, “Eczema, it’s fine.”

Then we transition to a scene at what appears to be an outdoor restaurant, and our sad skin sufferer is bundled up in a jean jacket. This is also where we realize Sis looks like a young Katherine Heigl but prettier (on the outside but I can assume on the inside as well).

Then her friend with a gorgeous complexion sits down at the table wearing a little tank top and asks Itchy Katherine Jr. if she’s hot, and of course we learn that it’s eczema and it’s fine. Of course. Well. The friend is NOT having it. She whips her tablet out before the server can even come by to see if they want wine. (I actually want wine just talking about this, FYI.)

The friend is all hyped about this commercial she saw for “Eczema Exposed,” and suggests that Hurting Heigl has a special kind of inflammatory dermatitis and she should go ask her doctor about this.

The patient in the commercial looks like, “Oh, wow! I’ve never heard of this before! I mean, I have to rearrange my personal life, my wardrobe, the co-workers who are willing to sit next to me, and everything else around this shitty disease, but it never occured to ask my doctor if there were any treatments around. I would have never thought to do any of my own research about my own condition. Thanks, Karen!” (You know that betch is named Karen.)

The complaints that most people have is that it’s annoying, that most people wouldn’t keep saying, “It’s fine (sigh.)” I have a different perspective. I am living with five different chronic illnesses. The ones that really keep me from living the life I’d love to have are Lupus and Rheumatoid Arthritis. There were two days last week that I was essentially bedridden because of the swelling of my joints. Since I’m living this life, I have a different perspective.

I can’t tell you how many well meaning friends have said really stupid shit to me. I’m an intelligent, educated woman and I do research on random subjects for hours because it amuses me, so of course I’m always checking on new research and development relating to what’s going on in my body. I’m 42 years old, and I’ve been living with chronic illness for almost 1/4 of my life, and the thing about chronic illnesses is that there is no cure. There are remissions sometimes, but at this point, there is no cure. Therefore, when someone comes at me to tell me that I should try what their sister’s mom’s best friend’s dog sitter swears by, my gut reaction is to be hurt and a little bit offended. I don’t know everything about autoimmune; far from it, but I have a good grasp on the basics of diagnostic procedures and criteria, medications, and harmful and helpful holistic treatments, etc. The sad reality, though, is that doctors, while knowing 500 times more than what I know,don’t know what causes autoimmune disorders. They don’t even agree on how many different disorders there are, and they know that what works for one patient can send another into a severe flare. It’s just a frustrating situation all around, and as patients, we do a lot of research and trial and error (a shit-ton of error, TBH) both as prescribed by our doctors, and on our own.  Telling me that if I just tried probiotics I wouldn’t have this disease feels like you’re directly insulting my intelligence. I know you don’t mean it that way, but I can’t help the way I feel. And it’s not just you. Take your hurtful comment and add it to the ones we regularly receive from everyone else in our lives, and it gets old fast. Do you think that I haven’t done that research? Trust me, Babe, I could talk for over an hour about inflammatory foods, gut health, and give you a pretty well developed outline idea of some of the leading theories.

 

But have you tried..._ (2)

I also have my team of doctors; most of them specialists, who have completed at least 13 years of post-secondary education and different residencies and fellowships. I may do a great deal of research on my own, but what I know about the scientific aspects of my disorders will never come close what my specialists know. I doubt that the information you’re bringing me, even if it’s from a TV commercial for a new pill from a pharmaceutical company, isn’t going to be new information to me.

I’m fairly certain that at this point, you think I’m overreacting. I shouldn’t have my feelings hurt or be offended by people that are trying to help. If it only happened once in a while, it might not be so annoying. That’s simply not the case.

I’ve had friends tell me that marijuana cures Lupus. It doesn’t, but for some patients it can alleviate some of the symptoms. I’m all for legalization, but it’s not something that has been beneficial to me. Someone else told me that I need to do yoga. This falls under the, “Do you think that I have not tried that?” category. When I’m not in a flare, I actually love working out. It’s excellent therapy for me, mentally and physically. So yes, I’ve tried yoga. I do it on purpose when I’m able.

Another thing I do not require is your essential oils. Listen. I’m happy for you if essential oils work for you. I haven’t found them helpful beyond their pleasing aromas. Lavender smells quite nice and I do find it relaxing. However, I’ve had MLM oil salespeople tell me to ingest different oils or use them transdermally. Oils can actually be quite dangerous if you’re drinking them (yes, even just a drop or two) or letting them be absorbed through your skin, particularly if they have a bad reaction with pharmaceutical medications the patient is taking to literally save her life. Simply reading the pamphlet that came with your Young Living starter kit doesn’t qualify you to prescribe things to anyone.

I can’t believe that I haven’t gotten to multilevel marketing (MLM) friends yet. There are so many people who have told me that their upline’s friend was able to cure her thyroid condition with this miracle Arbonne or It Works! or Isagenix. I promise you…if an actual cure for a chronic disease was discovered, it would not be sold by a multi level marketing company. One of the most promising treatments that has come out recently to treat autoimmune disorders is a biologic, which runs up to $7500 per month. One thing you can take to the bank is that companies who create new, promising, life changing drugs for the chronically ill don’t sell them for $70 a month and make it a part time business opportunity for a soccer mom to reach #fianancialfreedom.

I can say that I personally feel better with the vitamin packets from Le-vel Thrive, but that’s purely anecdotal. Other vitamins, particularly those high in Vitamin C or containing echinacea can be harmful to me.  We don’t want to boost an immune system that is actively trying to kill me, thanks.

I had another friend tell me that I just need to get up at the same time every day, no matter how I feel, make my bed, and decide that it’s going to be a good day. Yes, let me give that a go after pain woke up up 8 times last night, my joints in my ankles, feet, and toes are so swollen and painful that I needed my husband to get me out of bed and let me hold on to him while I walked to the bathroom. My #1 concern on days like that should be throw pillows being perfectly placed. I get the power of positive thinking, and I listen to personal development videos and read books about mindset, but that’s not going to cut it with a disease that can make my immune system attack my joints, kidneys, liver, brain, or whatever else it feels like taking out.

I’m in a few facebook groups for people with chronic illnesses. It’s really helpful to have someone to talk to who gets it. We recently had a conversation about different things people have tried to sell us on. We call it “woo,” a general term for anecdotal evidence, old wives’ tales, hearsay, pseudoscience, and just plain crazy. Again, we understand that you mean well, but frankly, do better. Here are some of my favorites from that thread.

  • Do you really have a neurological disorder though? Aries tend to get headaches more than the other signs. (No comment necessary.)
  • There’s a parasite you can intentionally eat that will remove autoimmune disease. (The fuck?)
  • Bathing in malt vinegar once a week will cure celiac. (Again. What the fuck.)
  • The pain and muscle fatigue get better if you just push through it. (From a weightlifter friend. Our deep muscle fatigue has a different cause than yours, and requires different treatment. Taking this advice could land us in the hospital.”
  • If you accept Jesus into your heart you will be cured. (Funny, because there are lots of Christians, and people of every other faith, who die of chronic illness all the time.) The same person claimed that eating boiled cabbage would cure this patient. (So maybe it’s a combination of cabbage and Jesus? Is there a recipe?)
  • Prayer in general. If we are not religious people and you know this, this advice feels more like judgement than anything else.
  • Sleeping with onions in your socks. (OK but why?)
  • Juice Cleanses! (This can be dangerous for healthy people. It could put us in the hospital too.)
  • Reprogramming your brain with positive energy! You can walk on hot coals if you get your mind right! (Some of us can’t walk  across carpet.)
  • Going gluten free/dairy free/nightshade free/paleo etc. (Again. Works for some, but not for others. This is not really terrible advice, but if you think we haven’t tried it, you’re wrong. I personally do feel much better if I stay gluten free and limit dairy, sugar, and soy. That’s just me though.)
  • Just say NO to Big Pharma! All those pills you take are makig you sick! (Listen, we understand as well as anyone, if not better, how deeply problematic the pharmaceutical industry is. However, some of us are only alive because of Western medical science. If there were alternatives that worked as well as our prescriptions do,particularly without the expense and side effects, we’d be all over it.
  • You’d feel better if you lost some weight. (Yeah. We know. However, some of us are on medications that make us gain weight but keep us alive. Some of us aren’t ambulatory. Some of us have conditions like PCOS that make losing weight nearly impossible.)
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BRB I have to go eat some parasites to cure me. 

 

You can see how a constant stream of this could be annoying. Do you know what we’d love to hear though? Here are some ideas.

  • “How have you been feeling lately? I’ve been thinking of you.” (I personally think it’s nice when a religious friend says they’ve been praying for me, even though I don’t believe in prayer. If they do, it’s meaningful to them, so I appreciate it. Just don’t try to convert me. Other non-believers can be offended if you know they’re not religious and you bring it up, so it’s probably a good idea to simply ask them if they’re comfortable with you praying for them.
  • “Would you mind telling me more about ___________ (their chronic illness)? I feel like a lot of the information I’ve found online is confusing or conflicting.” This can show us that you’ve tried to learn about what we’re going through without trying to push the remedy du jour at us. We’re not going to judge you for saying the information online is confusing or conflicting, especially if we’re dealing with autoimmune disorder, because theories are all over the place.
  • “Do you want to come over and watch a movie this weekend at my place? ”
    • or
  • “I was thinking it might be fun if I brought us some lunch and we hung out at your place and just relaxed.”  This is so lovely, really. Having a chronic illness can be really isolating. For me, personally, I am married, have a child, and two businesses. I miss going out and living it up with my friends, and just having that girl time connection or spending time with couples or groups of friends that my husband and I used to hang out with with, but my priorities have to be keeping a roof over my head. Going out on the town sounds fun, but it might be too draining for me right now. It doesn’t mean I don’t miss my friends. I have one girlfriend who invites me over to just hang out with her and her 2 year old daughter. We’ll talk, snack, watch movies, or play on Snapchat making videos with the kiddo. That kind of social interaction charges my batteries instead of draining them.
  • “Is there anything I can do to help? Can I bring you dinner one night, take your kids to the community pool when I take mine so you can get a break? Can I drive you to a doctor’s appointment for your next procedure?” Several of us have minor procedures fairly regularly that involve partial anesthesia and we need someone to drive us or we have to suck it up and deal with that 11″ needle in our spine unmedicated. Caveat to this: don’t offer unless you’re willing to do the thing and you actually want to. We don’t want you to resent us, and it’s perfectly OK if you can’t do anything to help us. We get it-you’re busy too. You have limits on your time, energy, and finances, and we totally understand.
  • “I saw a really annoying commercial about eczema the other day. The lady kept saying, “I’m fine. I’m fine. I’m fine. Is that the kind of eczema you have? How do you treat yours? How does it affect you? Does it flare and go into remission, or is it pretty constant? Also, you shouldn’t have to sweat it out in a jacket because of a medical condition. I love you and I don’t want you to feel like you have to hide with me, but if you’re more comfortable covering up I understand that too. Just don’t feel that you need to do so on my behalf.
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Much like your toddler, I can entertain myself with Snapchat for an hour. Me+a toddler+Snapchat=you can clean out your closets, your gutters, whatever. I have this covered. Even better, I can have all the screen time I want because I’m a grown ass woman.

That last one is how Karen should have started the conversation in the restaurant, if you ask me. It would let blondie know that she cares about her and she wants to learn more.

The reality is, we just want to be treated like people. Intelligent, whole, educated people. We LOVE that you’re thinking of us and wanting to learn more about our conditions. I have friends I used to be really close to that have never asked me about my illnesses. That’s OK. Some people aren’t meant to stay in our lives forever. That’s just the way life goes, and I have nothing but love for them and wish them well. But for those of you who are loyal, loving badasses and are still in our lives and read through this whole thing, THANK YOU. From the bottom of my black, sarcastic heart, I love you for reading this and wanting to learn.

Love, light, and parasites,

-Selfish Mitch

 

Probiortics

Work Sick, Part 2

Self Care Isn't a Luxury.Self Care is aNecessity..pngI had goals. I had HUGE goals! I was going to crush it in real estate and start my own team. As I mentioned in my last blog, I even had the name of the team and my logo all picked out.

Then chronic illness happened. They say everything happens for a reason, but I disagree. Sometimes things just suck. They knock you down, turn you inside out, and drastically change your life for the worst. Have I gained perspective, knowledge, wisdom and other shit from all of my health problems? Yes. But it sure as hell doesn’t make up for a full, healthy, relatively pain free life. I want to feel normal. I want to do things other people my age do without having to carefully balance on a tightrope doing health equations in my head every single day, but that isn’t the life I have, and it’s not the life I’ll ever have unless medical science gets its shit together. I’m not holding my breath.

If you’re an entrepreneur who has recently been saddled with a diagnosis that you’ll have to deal with for the rest of your life, I thought I’d share my strategies with you.

  1. First and foremost, BE SELFISH. You need to put yourself first whenever possible. I feel almost lucky that I have always been a little selfish, but I really had to hone it in when I got sick. For women, in particular, we’re used to saying yes everytime someone asks something of us. Be it our partner, our boss, our coworker, the PTA, our friends, family, children, etc, you need to learn to say NO. You must put your health first. If that means you’re no longer available to network, don’t let people tell you that you that you MUST go to every happy hour a title company throws. If your spouse is a grown ass human being, don’t keep doing all of the housework yourself. If they need to learn how to cook, or do their own laundry, or sweep a floor, it’s about damn time anyway. Tweens and teens can start pulling their own weight as well. Putting some of that physical work on other people is very helpful. After all, if I go down, the whole ship goes down. If a relatively healthy person runs herself ragged and gets sick, a few days of rest generally return her to health. My last flare was pretty bad and it took a month to stabilize. During a flare, laundry doesn’t get done, nor do income producing activities. I must choose wisely every day.
  2. REEVALUATE YOUR GOALS. This one took me a while. I had dreamt about running my own team, because I’m the kind of woman who people call bossy, but I know that I just have leadership skills. It was a let down to realize that it probably wasn’t in my best interest especially in the hypothetical team members who would be relying on my guidance and commitment to their success for their income, or in my clients’ best interest for me to be on my own or running things. I’m lucky that I started on a team with an incredible mentor and was then recruited to the team where I still work today. I am still a kick ass agent, but if I happen to go down and require time off, my team mates will happily pick up where I left off with my clients and see that their needs are met at the highest level. Sure, I’ll have to split my income with them, but I don’t have to make the choice to either run myself totally into the ground to do a 5 star job or abandon them in the middle of the process of selling or finding a home, and lose my paycheck entirely. This ties into…
  3. FIND A SUPPORT SYSTEM FOR YOUR WORK. As an entrepreneur, I’m sure you’re used to doing everything on your own. That’s OK if your disability is something that’s pretty predictable. You should be able to figure out what you’re able to take on at any given time and what you’re not, and what you can realistically accomplish as long as nothing catastrophic occurs. Autoimmune illnesses are different. I can be feeling great and functioning for all intents and purposes like an adult with a bad back problem one day, and then go into a flare that basically feels like the worst flu you’ve ever had the very next. I’ve gotten fairly good at predicting flares, but they can still knock me for a serious loop. For me, as a Realtor, being a senior agent of a Top 50 Team in the USA as ranked by the Wall Street Journal is the best support system possible. They work with me on the balance I need of working from home or working in the office. Obviously I work with clients in their home and in the field, but when I’m prospecting and doing paperwork, I can get more accomplished in my home office where I experience less physical pain sometimes. I miss being in the office with my team, but I have support and the compromise works for everyone.
  4. EAT RIGHT AND EXERCISE. When the ball dropped on New Year’s Eve and 2016 became 2017, I was 236 lbs. I was ANGRY with my body. When you have a chronic illness, you feel like your body has betrayed you. Sometimes when someone asks me why I do or don’t do something, I simply say, “Oh, because my body is an asshole.” I still think that’s true, even though my body and I have come to something of an understanding this year. If I feed it right about 90% of the time, avoiding foods that are inflammatory (to find out what foods are inflammatory, just write down a list of everything that’s fucking delicious, like gluten and sugar) exercise regularly for 30-60 minutes a day, get enough rest, and don’t stress out too much, my body takes it easy on me and lets me live a “new normal” life. I’ve been treating it well enough that I now weigh 169 lbs at this moment. Weight loss, however, is a side effect of the health and fitness program I started at the beginning of the year. The main objective was to FEEL BETTER and keep flares at bay. I can’t freaking believe how much better I feel when I eat right. It does kind of suck that I can’t enjoy the donuts   the home warranty rep brings into the office in the morning, followed by the pizza the lender brings for our team lunch meeting, followed by happy hour at the bar in my office. Again, it’s about saying NO. I honestly feel like my life finally changed for the better once I got started with fitness, which is why I became an online health and fitness coach. I’m extremely passionate about helping anyone, especially people with chronic illness, change their bodies and their lives. Doctors throw pills at us and tell us to lose weight, but I’ve never had one suggest a nutritionist or a way to determine which foods specifically inflame my body. That’s life changing stuff.
  5. Discover who your true friends are. That’s a hell of a lesson to learn in your mid 30s. Your true friends are the ones who understand why you have to cancel hanging out yet again. They’re the ones who continue to invite you, even when you bail early if you show up at all. They’re the ones who are happy enough stopping by to chat when you’re in your pajamas, on your couch, in your messy house, because you can’t get up to clean, and they’d never want you to exert yourself by cleaning up on their behalf. They know that usually, your work takes priority when you only have the energy for work or play. Treat these friends like the rare, precious gems they are. Take their phone calls whenever possible. Be there for them emotionally if you can’t be there physically. Having strong friendships is actually big factor in longevity and in avoiding depression and other illnesses. Don’t let them go.

There’s no one size fits all guide to being an entrepreneur with a chronic illness, but this is what’s helped me. In these crazy times of escalating health care costs and the uncertain future of the Affordable Care Act, it’s crucially important to arm ourselves with skills and strategies to manage our illnesses with nutrition and doing the right activities as much as humanly possible so we can continue working, making money, and contributing to our society and our families. As always, if you have questions or comments, I’m just a click of a mouse away.

Gentle Hugs,

-Selfish Mitch aka Michele Van Detti, Senior Partner, The Curtis Johnson Division of Revelation Real Estate

PS. The pin above is one I purchased from www.EmilyMcDowell.com I LOVE everything on their site, and don’t get paid a dime for linking to  them and they have no idea who I am. I just like to share stuff I love.