Failure Or Fun? You Choose

I get a lot of flak for my dating life. Well-meaning friends and family have tried to keep up with the names of the men I’m dating, and I tell them not to bother, because they won’t be around long. I also deliberately avoid family photos. It means that I’m often the butt of many jokes, which admittedly sting from time to time. But my refusal to settle means that I continue to avoid divorce, too. I always end up with good stories.

Here’s the perfect museum for me, and people like me: The Museum of Failure. Of course this has to do with the world’s worst innovations and not relationships, but these are gloriously bad. That shocking facial mask?? OUCH. I had my face tased for a test, it’s not pleasant. I would not buy a device and do it willingly on a regular basis. What the what…?

And the Colgate lasagna…well, this year there was an ad for toothpaste that tastes just like a Burger King Whopper, but that was an April Fool’s joke. Trust me, you do not want this unless you are going to be single forever. And not talk to anyone. Ever. And not get laid. EVER. No.

If you haven’t had the pleasure yet, one of the items included in the Museum of Failure is the Bic for Her pens. It’s not because the pen itself is dysfunctional. Bitch, please – why the fuck would you market a pen as only “for her”? Talk about trolling, Amazon couldn’t keep up with erasing the “reviews” fast enough, so there’s a ton of material out there that you can search for, but here’s a taste.

Speed Dating a la Cab Ride

When I first moved back to Minnesota in the summer of 2015, I had some leeway in being able to be upright before I started to get paralysis in my face. I could be without my cane and go incognito for about an hour before it became obvious that there was something not quite right with me (besides being “weird” as some of my friends declared my personality). But as I’ve gone on without being able to get any assistance from doctors and the pressure in my cranium has increased, I haven’t been able to leave without my cane, and the left side of my face becomes immobilized much quicker now. I become invisible to the majority of the opposite sex. I don’t dress any differently, I still put on my yummy perfume oils that smell like sex and chocolate and I still do up my makeup just right. But my cane and the left side of my face are my instant cloak of invisibility.

The exception is middle-aged Somalian cab drivers. 

First, they find out if I’ve had children. I tell them I’ve had a hysterectomy, so I can’t have children. They tsk-tsk their tongues and then say, “That’s too bad. No kids? Maybe some day. That’s okay.”
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Then they ask me what I like to do for fun. I explain that I don’t go out much because I have to lay down a lot because of my health problems. They make the tsk-tsk sound again. “You have to get out more.”
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Sometimes they will ask me if I believe in “God.” I tell them I don’t believe in religion and I will not be with someone who pushes their beliefs on me. Some will tell me I need to pray about it; some will tell me they respect that and I don’t have to believe what they believe (but I’m a pretty suspicious sort of person and I always think men will say anything to get in my knickers). 
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Then they get to the point where they ask if I would like their number. They tell me that everyone wants someone to be close to – which is true. Some try to sell me on the point that in the Somalian culture, everything is provided for the women. (This is not at all appealing to me – good thing my face is paralyzed to keep things polite! I don’t want to be thrown out of the cab.)
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Sometimes I have to refuse the offers of numbers 8 or 9 times. This last one, pictured above and most recent, was a fun sort of guy, and we talked a lot about dancing. I used to do a lot of swing and salsa dancing and miss it terribly. He told me that he goes out dancing for 4-5 hours at a time and it would be great exercise for me. When I was having a hard time getting him to take no for an answer, it was becoming a sort of unreal conversation:
Him:  You should let me take you out dancing.
Me: I can’t. I need to have brain surgery.
Him: When will that be?
Me: I really don’t know.
Him: Tsk-tsk. You should let me take you out dancing.
Me: No. I can’t even turn quickly. Dancing could kill me. (I didn’t explain the whole pressure in the cranium and stroke and aneurysm risk factor – way too complicated.)
Him: It would be fun. We should get to know each other.
Me: I really have to concentrate on my next surgery for now, but thank you.

Thankfully most of my doctor appointments are within 10-15 minutes of my apartment so the awkwardness never lasts much longer than that.

All You Need Is Your (Whole) Health Back (Movie and Book Review)

Half of the adult population around the globe has some sort of chronic condition, varying in severity. Some are lucky enough to barely be bothered by it except as a reminder on their calendars once every few years to get checked by a doctor for any notable changes. Others can’t move an eyelash without being reminded that their body has taken on a long-term burden and there’s no relief in sight. A huge majority fall somewhere in between. Because of this, and social stigmas falling away regarding the discussion of chronic conditions, the market is being flooded with all kinds of materials and “how to” manuals for coping.

Through the Chronic Illness Bloggers group, I was lucky enough to be given these two products as part of a product review through the Chronic Illness Bloggers network. Although these products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The two items that I was given in tandem were a documentary called “The Connection,” and a book called “The Whole Health Life.” I didn’t approach either medium with any expectations, which turned out to be a good thing, because I tend to be very particular and picky – I don’t want my movies or reading materials to be too “preachy,” nor do I want them to assume that I know nothing about my diseases. Most of the time I see manuals out on the market that are written with new patients in mind, not with 20-year war veterans like me.

First, I’d like to cover “The Connection.” I’ll admit, I reached for this first because I didn’t feel like I had the attention span to get me through a book right out of the gate. I was quite pleasantly surprised. It was a good pace, but not overwhelming, while still giving the audience constant reliable information to process. For instance, I learned about “medical hexing” – many patients are told by doctors that we’re not going to get better. Would you believe it if I told you that two weeks ago, my primary care doctor told me that I should just give up and accept that I will never find a neurosurgeon who will be willing to help me with another shunt surgery and who will take my tumor out? Boy, is that ever a hex! But a hex doesn’t have to be that obvious. It can be about giving you a pill rather than looking at your whole lifestyle and looking at what can be improved upon. 

More points from the movie hit home for me, especially since I’m having such a hard time finding doctors who will help me. For instance, if I have zero support – friends, family, doctors – I’m three times more likely to die early. Luckily I have some really great family and friends. Also, belief is part of why we get better, but it takes both the doctor and the patient believing. So far, I don’t have the doctors backing me up. And I also learned from the film that our genes do play a major role in what we do develop as far as diseases go, but our life experiences and our environment also trigger the genes. In other words, you could be perfectly fine but if you go wading knee deep through an oil spill, chances are that MS is going to come leaping out that has been lurking all these years.

So if you haven’t picked up on it, the documentary “The Connection” got my attention. Because of that, I was confident that the book “The Whole Health Life” would be engaging – and it was. And that says a lot, especially coming from someone who has the attention span of a gnat at the moment.

As readers, we can spend more time on the book, relating to what the writer is saying about wading through the soup of pain and foggy brain, trying to get through an able-bodied world and looking normal on the outside. Immediately the author, Shannon Harvey, introduces the core concept: we cannot deal with health by separating “body” health and “mental” health. They are intertwined and inseparable. A pill may address one portion and meditation may address another portion and talk therapy may address yet another potion and engaging in positive social activities may be uplifting, but when consumed in isolation, they hardly make a difference. When combined, they improve a person’s well-being by leaps and bounds. Ms. Harvey breaks it down into 10 topics to easier process and incorporate the practices into daily living.

For me, meditation is difficult. As I mentioned before, my mind is more that of a squirrel than it is a turtle, but she talks about the benefits of calming the mind and recommends a few easy steps that anyone can pick up. Emotions logically follow right after that. What are we doing to process our emotions? What do we allow to play on our inner recording? And then there is the “placebo effect.” Let’s try changing the name of this, the taking of sugar pills and still seeing positive results, as if a patient has taken “real” medicine; what is really at work is the power of belief. The belief that a patient can heal and become well again (or at least have an improved life) that comes with the motion of the taking of the medicine is just as powerful as the drug itself and has been documented for hundreds of years; it’s why people “pray” when it seems all hope for recovery is lost.

Of course, on the physical side, what we put into our bodies and how we move our bodies makes a huge difference. Eating the foods that are the best for us, sleeping the right amount and exercising to the best of our abilities are all important in our recovery and maintenance.

As a “spoonie,” as those of us are known who have chronic conditions that cause fatigue and pain, many of us keep blogs, as I do, as well as participate on social media like Facebook, Twitter and Instagram. We seek out others who are like us. We appreciate having others who understand our daily (and sometimes hourly, minute-by-minute and second-by-second) struggles. I think that “The Whole Health Life” would be a good book to read and re-read because we tend to get stuck in patterns that reinforce the negative feedback loop – myself included. If someone isn’t feeling up to concentrating on words, then they can sit back and watch “The Connection” for some reinforcement.

Please visit the documentary movie “The Connection” here.

You may purchase the book “The Whole Health Life” by Shannon Harvey through Amazon here.

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Gender Bias: It’s Not Just for Work

Everyone is going crazy for this article that was published about a man and his subordinate who swapped names as an experiment to show gender bias in the workplace. Really, it’s not so much an article as it is a series of tweets, but you get the full picture. And REALLY really, if you’re a woman and you’ve worked outside of the home or if you’re a woman and you’ve been outside of your front door, you know how this went.

We Swapped Names and I Was So Surprised (Said Every Male)

But if you know anything about my blog or about me, I write about my experiences as a woman in the American healthcare system. Now I’m a really concerned woman as I watch a very out-of-touch bunch of Republican-led lawmakers work on dismantling the social safety nets that will help keep me housed and fed as a disabled adult with no chance of working (at least, not now, for as long as I’m allergic to the shunts they keep putting in me).

A huge barrier to my care is the fact that I’ve seen 57 doctors in 6.5 years, and a good number of them have told me to go away and not come back. My disease and symptoms scare them. They can’t diagnose me. I can tell them exactly what’s happening with my body, but they don’t believe me – they tell me it’s not possible, even when I demonstrate it and they see it with their own eyes.

I was told by someone close to me – a man – that I probably wasn’t doing something right. I wasn’t advocating enough. I wasn’t demanding enough. I wasn’t yelling enough. I wasn’t stoic enough. I was probably too emotional, or not enough, or not the right combo. I was just the wrong kind of patient and it was hurting my case.

By the time you get to 57 doctors in 6.5 years, you learn a lot of tactics: cajoling, crying, stoicism, joking, demanding, taking binders of info (so they can’t claim that they don’t have enough of your info at hand to continue).

My conclusion is that I just don’t have a penis. I wouldn’t be doubted. I wouldn’t be treated as if I’m being over-dramatic or like I can’t handle four-syllable words.

I always invite someone who has told me that I’m not doing enough to come with me. Of course that person suddenly becomes too busy to join me…but not too busy to dispense advice from his armchair.

immunizeLABS Has You Covered

Whenever I venture out in public, I try not to think about all of the surfaces that other people have touched, and what they have touched before they touched those surfaces. But I have to. My immune system severely lacks IgG3 and IgG4, which means I can’t fight off microbes like normal people can, and I’m blessed (should I say blessed?) with fibromyalgia and irritable bowel syndrome, which make me more vulnerable to illnesses and tougher to recover. The most recent confirmation that I was born with mast cell activation disease doomed me to vulnerability. I know what I have, I just gotta find a way to fight stuff off. Besides being diligent about washing my hands and not touching my face, what are my options?

I was contacted by immunizeLABS to try five products in the thick of flu season. I have been given these products as part of a product review through the Chronic Illness Bloggers network. Although the products were a gift, all opinions in this review remain my own and I was in no way influenced by the company.

First I’ll cover three supplements: Boost, Shield and PainRelief.
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Immediate basic impressions were that I was thrilled that these were room-temperature stable and that I didn’t have to store them in the fridge. I have so much more success with taking things on a regular basis when I have them sitting in front of me than I do when they are tucked away in a fridge. Also, you’ll notice that the contents are sold in dark blue bottles; most companies will do this when the contents are photo-sensitive and the ingredients degrade when exposed to light.

The most important thing about all of these products (including the items that follow after these three) is that they all contain colloidal silver. Colloidal silver is known to be anti-microbial. In fact, I purchased a quick-drying travel towel that is woven with silver threads because it is specifically anti-microbial. If you have done any kind of studying on your conditions (if they overlap with mine), you know that microbes tend to be our enemy and overtake our systems and are hard to get rid of.

immunizeLABS formulated each of their products to have a specific outcome. For instance, each one does contain different values of the colloidal silver, as well as ginger, cinnamon bark oil and medium chain triglycerides, but then the PainRelief contains curcumin, which has been used for centuries as an anti-inflammatory. You wouldn’t want to leave home without Shield, which included in its ingredients is the all-important vitamin C in a super dose, but there’s also other supportive items that you don’t have in your medicine cabinet. Add Boost to your routine, which includes glutathione, which is a supplement that assists with repairing and building tissues, making chemicals and proteins, and generally “boosting” the immune system. (Their complete ingredient lists are available on their website: immunizeLABS)

The products state to start with 1 teaspoon of product in 2-4 ounces of filtered water in the morning at a minimum of 20 minutes before you eat, gradually working up to 2 tablespoons of product in water over a week’s time. Here are pictures of what each look like before they are mixed in water (left to right: Shield, PainRelief, Boost):

The product labels say the flavors are “chocolate.” This is the only problem I had with the products. I know that these contain all kinds of things that are good for me, but I could never get past the flavor. My dad and uncle owned a hair salon for decades and they taste like what they use for hair coloring. I’m sorry. They just do. So what do you do? You mix it fast and you chug it fast.

So in the thick of flu season, I can say that I have successfully avoided getting taken down by any nasty bugs, despite being out often in public. I’m not sure if my inflammation has been systemically reduced, but not getting sick is huge for me. I did feel more clear-headed – brain fog is a real challenge – and my digestive tract acted like it was on an actual schedule rather than all wacky. I could also tell that my pulse was not jumping around after ingesting the cocktails. When it does, it’s an indication to me that my blood sugars are spiking or I’ve had something I’m allergic to. I will consider this an overall win. 

One of their other products may have helped to protect me, and that is their Breathe Easy Nasal Spray:
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I’m not a sufferer of migraines so I can’t give an opinion from that perspective. However, I often suddenly develop congestion – and I’m not sure if it’s because I’m experiencing a mast cell trigger, or if there’s pressure building up in my cranium from the cerebrospinal fluid building up. The Breathe Easy spray is a mixture of the colloidal silver plus sea salt, certain essential oils, as well as horseradish and cayenne pepper (say what??). I’ve been giving it a couple of pumps before I go to bed as well as when I feel stuffy, or when I come in from being out in public, and again, I haven’t gotten sick and the stuffiness goes away. I also consider this to be a “win.” In fact, you can use this one as often as you feel the need, so I think I’m going to do that right now.

I’m saving my favorite for last, and that’s the OralMiracle.
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I have all kinds of challenges with my mast cell activation disease, including my mouth burning and suddenly developing allergies and sensitivities where I didn’t previously have any. Even commercial brands that are on the market that boast to be alcohol-free still make my mouth burn. I also want to have white teeth just as much as the next person – why should I have to sacrifice that just because I react to strong chemicals? Again, this product contains the colloidal silver to control microbes; imagine how much of a boost it gives your mouth to have that anti-microbial assistance when you’re trying to prevent tooth decay.

The recommendation on OralMiracle is to swish 2 teaspoons for 3 minutes; “The longer you swish, the deeper the healing.” The taste is pleasant and most importantly, my mouth doesn’t burn. They strongly recommend that you don’t eat or drink for the rest of the evening so the product isn’t washed away. My budget is really, really limited right now, but this is the one item that I would spend money on again and again.

Please visit immunizeLABS for their entire line of products as well as their ingredients to make sure that they will be safe for you to use.

Living with……

One of my friends only just recently decided to post on Facebook the random challenges she faces as someone who struggles with anxiety on a daily (and really, constant) basis, including scenarios similar to these. Posting on FB makes her particularly vulnerable (I think) because people tend to be a lot more random; here in the blog sphere we can tailor our focus and therefore possibly in turn be a more understanding audience for our fellow bloggers right out of the gate.

I’m learning to live with anxiety myself now, something I’ve never had to deal with. It hitched a ride with my major depressive disorder and PTSD (yes, they’re official). I now get anxiety every time I have to talk on the phone. Because of the pressure in my cranium and where the tumor is pressing, I forget words, and I stutter and stumble, and I’m very self-conscious about that. I often forget what I’m talking about mid-sentence too, especially if it’s complex.

I’ve always been a very social person. Because of anxiety though, I have to talk myself out of cancelling plans every time. I usually don’t sleep the night before doctor appointments. Recently I didn’t sleep after an appointment. But the absolute weirdest thing that happened is that I had a panic episode watching a movie. A stupid movie. I can’t even remember which movie it was (I burn through them quickly – 6 or 7 a week) – but I had to shut it off. It wasn’t an action movie.

It’s a strange club to be in.

Please read my fellow blogger’s piece on anxiety.

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I often think that the hardest thing with anxiety is that people without it can’t comprehend how difficult it is to do simple things like taking your child to school, during the school run. C…

Source: Living with……

Are You An Organ Donor?

I have friends who have received organs from living donors, from cadaver donors and from donors who have indicated that they wanted to donate their organs and tissues in the event that they suffered trauma that they could not recover from.

There just aren’t enough organs for the people that are listed. And organ rejection is a real concern. But scientists are looking to pigs to fill in the gaps on how we can avoid rejection:

New Hope in Organ Donation Crisis

Also, this story has been making headlines from the Mayo clinic, based here in Minnesota. It’s the first facial transplant that the Mayo has attempted. It was also surreal to realize as I was originally reading the article that I have a personal connection to one of the families. I was not much younger than Lilly when her mom and I met each other and became fast friends while attending a school for the arts. I can’t imagine going through all that she has – marriage, pregnancy, the sudden loss of her spouse, and then deciding to go ahead with this donation – at her age, but damn, she has done good. By the way, their baby boy is absolutely adorable, and absolutely adored.

Mayo Clinic Performs First Face Transplant

We have so far to go with science and healthcare. We don’t know all there is to know. We have to keep moving forward, and supporting lawmakers who approve budgets for science.

 

Dear Seema: The Politics of Prevention

We are the only privileged nation who allows insurance companies to make a profit off of our sick bodies and demonize those of us – ALL OF US – who need healthcare. Because after all, all of us will need healthcare, whether it’s at the beginning, middle or end of our lives.

communicating across the boundaries of faith & culture

Note: Seema Verma is President Trump’s nominee to lead the Centers for Medicare and Medicaid Services in the United States.

Dear Seema,

I’m a Registered Nurse who works in Boston, Massachusetts. I have witnessed first-hand what it is like for people to go without insurance, to delay preventive health screening only to find out that cancer is a far more expensive problem.

There are not a lot of things that make my proverbial blood boil, but reducing access to preventive healthcare, including maternity benefits, does. It makes me so angry I can’t see straight.

Look, I get it. Health care is expensive. Someone has to pay for it. But everyone bears the burden of an unhealthy society and while the Affordable Care Act (aka Obama Care) was not perfect, it began to put some policies in place that have been needed for a long time.

I come to this not from…

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