Dirty Is The New Clean

I’m sure most people know what the hygiene hypothesis is, but just in case, here’s a blurb from everyone’s favorite questionable source. https://en.wikipedia.org/wiki/Hygiene_hypothesis The original formulation of the hygiene hypothesis dates from 1989 when David Strachan proposed that lower incidence of infection in early childhood could be an explanation for the rapid 20th century rise […]

via Hygiene hypothesis: Be more dirty — Polishing Dookie

Pat, I’d Like to Solve the Puzzle — Patient Worthy

One Thursday night, I was completely emotionally wiped out. There was something that went down in my family and I spent that evening on the phone and in tears. I’m not going to go into detail; I feel like it’s not my story to tell. I had as much pep as a wrung-out washcloth. I…

via Pat, I’d Like to Solve the Puzzle — Patient Worthy

Sharing Is Caring

I got accustomed to living in my house in Phoenix; I had a large lot, the walls were brick, and not many sounds penetrated from the outside with the exception of the neighborhood roaming illegal roosters crowing day and night. Conversely, I could make as much noise as I wanted to like singing loudly, and I didn’t really have to worry about disturbing my neighbors. In true Phoenix fashion the curtains were always drawn to keep the sun from heating the house up too much.

Now I’m in an apartment in an old building in Minnesota that is less than 1/6 the size of my house, and besides being aware of the size, I’m aware of touching space. Specifically I know what my neighbor upstairs has for breakfast on weekends, or when her kitten is playing with a toy. I also always wince whenever I drop something on the floor in case there happens to be an apartment below me in the basement (which I still can’t figure out but have heard noises come from that area from time to time like someone is doing prep work in a kitchen).

All winter long I have had a fan going because even though this is an ancient building, the radiators work like ancient screaming, steaming beasts, and I sweat like crazy. I don’t even get under the covers. I also wear my summer pajamas, which are usually big t-shirts or chemises.

Today, however, the radiators are not on, so neither is my fan. It’s just chilly enough for me to be under my covers and for my electric bed pad to be on. I decided to dissemble my fan and wash all the parts because they have been caked with dust like fans are wont to do. In the quiet, I have become aware of certain things.

First, just because my fan has drowned out outside noises to me, doesn’t mean my fan has drowned out my noises to other people. I mean sure – I’m a decent singer. You’re welcome, neighbors. Second, I could hear my upstairs neighbor and a few of her friends giggling. This was not loud giggling. If this was not loud giggling, then what could she hear from ME? I really, really need to work on my whisper-scream, if you know what I mean. Pretty sure I need to stuff the space around my door with towels too. What the other tenants must hear when they pass by my door…! I can see it now: “Hang on, honey, I need to do some soundproofing. Hold that thought.” I just saw the movie “Room.” I wonder if I could soundproof my little sweat box just like the psycho did the shed where he kept the girl imprisoned? I would only use my powers for good and never for evil. I sure would love the luxury of screaming loudly without summoning the cops. Of course, that would work against me too. I have wiped out a few times in the tub and it would be just my luck that I will have to holler for help at some point and not a soul will hear me just because I want to set up my apartment to have noisy sex.

Speaking of sweat box, I tend to dress down when I’m in my apartment and it’s about 80-85 degrees F when the radiators are blasting away. My windows face a business that doesn’t have any windows facing mine and the alley doesn’t get any foot traffic because it’s fenced off on both ends…except for today. When I got up this morning I raised my blinds about a foot so I could see some sunshine. However, at around 9 am, two heads came floating by my windows about 7 feet from where I lay in bed next to the windows – I’m on the first floor, but I’m up a half flight of stairs, so my floor is not exactly flush with the ground floor. Apparently the business was experiencing problems with its ventilation system and a bunch of guys had scaled the fence to work on the wires.

I didn’t make any sudden movements, just laid in bed in my not-safe-for-public-consumption t-shirt and undies, no makeup and no wig. I slowly raised my body pillow so that it blocked me from their sight and when they left the alley temporarily, I jumped out of bed to put my shades back down. I honestly don’t know if they were being polite or unaware by not looking in my windows. Really, I was doing them a favor by sparing them of the full effect of me in all of my glory because it can be quite startling if one isn’t at all prepared.
This is the ultimate dilemma. If spotted, do I flash them my saggy 40+-year-old boobs so they know I’m really a woman and not a dude with a bald head? I mean, if I were transsexual, there is no way I would pay money to have this body. <sigh> I guess this was a good reminder that I shouldn’t run around in my skivvies with the blinds up even a little bit.

The Difference A Year Makes

Those of us who are hardest hit by serious illnesses go through these phases where we need to fold down into ourselves to regroup and reevaluate and re-prioritize. This is not the time for capes or pink ribbons or pedestals. This is not the time for insincerity. It’s the time for contemplating life and death. It’s the time to weigh quality over quantity.
+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + +

AS I LIVE & BREATHE

I felt off today when I got up & I didn’t immediately know why. But then it hit me. I saw something in my Timeline on Facebook that triggered me.

View original post 460 more words

Powerful Organ Donation Video

From my fellow blogger sister and Blab host Nikki; why organ donation really matters. I know five people now who are living long lives because of organ donations.

+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + +

I don’t cry easily, but this video that my cousin passed along to me via Facebook yesterday really got the water works going. I figured it was worth a share…

Source: Powerful Organ Donation Video

Did I Or Didn’t I?

Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

The Saint Paul remarked upon the sheer volume of medicine that he could see displayed in my bedside drawers, something that started with “Wow.” I told him that the one drawer that was open as well as the bottles on the surface were only the half of it and that the other two drawers were filled as well. Of course, I don’t take them all every day; some I keep because I know they might come in handy later. Truly, though, I go through about 45 pills per day thanks to my prescriptions and supplements.

The makers of PillSuite (http://pillsuite.com) were kind enough to send me their product to give it a whirl. I received a sorter, two rolls of sealable baggies and a sealer. 2016-03-27 11.40.02I chose to load up my midday pills, which are only about seven in number but are the largest in volume. When I looked at the sorter, it seemed like the compartments could only handle these seven, and I was right.

The baggies are biodegradable and can be written on with any sort of note you choose to write; I recommend a fine-tip permanent marker.
2016-03-27 11.41.51

After you snap the lid onto the sorter, you flip it over so the funnel lines up into the open end of the next plastic baggie to load up the dosage.
2016-03-27 11.42.25
There was just enough room to get these horse pills into this baggie, just like there was just enough room in the compartment.

Next, the open edge of the baggie is pushed to the back of the sealer and the big button is depressed for 3-5 seconds, which seals the baggie shut with a fine line. The red indicator light shows that the sealer is working its magic and closing off the baggie.
2016-03-27 11.44.07
After that is done, both ends are completely sealed, and your meds and supplements are ready for transportation.

When you are ready to consume them, there is a perforated end that can be easily torn open.
2016-03-27 11.44.52

Here are some advantages to using this product:
1. You bet I like the fact that the baggies are biodegradable! I’m always worried about how much I consume and add to the demise of our resources because it’s not easy for me to do things that able-bodied people take for granted. Check out this episode of In Sickness + In Health podcast (http://www.insicknesspod.com/blog/2016/3/8/23-when-sus).
2. I can write anything I want to on the baggies. I can indicate the medication names and dosages, or I can indicate the time of day the pills should be taken, or I can remind myself to take the contents on an empty stomach an hour before eating, etc.
3. This is a great product for traveling. Sometimes I have appointments that require a lot of time for me to be away from home, and it would be a lot easier to slip one of these baggies in my purse than it would be to take a pill sorter or an actual bottle (or seven) with me. This would be pretty handy for a short trip as well. The only time it wouldn’t work is traveling outside the country; TSA requires medications to be in their original prescription bottles when traveling outside the U.S.
4. This takes the mystery out of whether you have missed dosages or not, especially if you have scripts or supplements that are taken 3-4 times a day or you have to stagger everything according to a full versus an empty stomach. I have yet to see a pill sorter that has enough compartments for all of my dosages.

One disadvantage for me? My evening dose of meds and supplements actually adds up to about 25-30 pills and capsules – the seven that you see here, plus a bunch more, depending on how I am feeling. I would actually have to fill two compartments in the sorter and therefore two baggies for the nighttime dosages.

Ordering additional “suites” as the baggies are called is impressively inexpensive from http://store.pillsuite.com/.

Ch-Ch-Ch-Changes

I’ve been laying low for a few weeks. Actually, that isn’t quite right – I’ve had to put on makeup nearly every day and wear a bra and be polite and make sure my pants aren’t falling off of my ass every time my name is called and I stand up because of non-stop appointments and activities. Most of the time it’s exhausting because my brain is being smushed like people have sent over a few of their puppy-monkey-babies to sit on my head and bounce around a little. At the end of each day I’ve had very little energy to do much else than watch my TV boyfriends Jimmy Fallon, Trevor Noah and Larry Wilmore on Hulu.

My uncle’s memorial service was Monday. There was quite a large turnout – something in the neighborhood of 300 people, I think. It was lovely and sad, and especially tough to see pictures of my aunt and my dad on the slideshow that was run during the service, who preceded my uncle in death by 20 years. Every single one of us cousins on that side lost a parent at a very young age. Thankfully there were a few funny stories and pictures to break up the sadness.

About a month ago I went to a session at a health crisis center where a musician brought his guitar and we had a little singalong activity. It was nice to sing – it’s one of my favorite things to do – and I have a decent voice, and I met a woman who seemed to be fairly friendly. The thing about the crisis center is that people attend whether they have physical illnesses, mental illnesses, or both; this woman happens to have mental illnesses, though I didn’t know it when she started talking to me. She gave me her number and said she would be interested in getting together because she wanted to expand her friendship circle.

Well, I didn’t know it at the time, but “expand” really meant that she wanted to make A friend. One. Me.

I had new orders put in for nerve impingements in both my left shoulder and right hip, so I’m going to PT twice a week now. Besides that I have other appointments for counseling or additional doctor appointments at least once a week, including an EMG for my head and face tomorrow morning. I’ve still got the tremors going on in my legs from being upright so much.

I didn’t realize that the lady didn’t fully expect me to actually call her, or that I was the only one polite enough to give her the time of day. However, slowly as she cornered me on the phone day after day for a few hours at a time, she revealed she had some issues with obsession and stalking, including the fact that a man who attends her church has a restraining order out on her. At one point she told me that she thought that he was trying to be friends again; what did I think? I told her that he might have been polite, but she should keep her distance. I finally told her that I can’t talk on the phone every day. Now she texts me every day and asks if we can go and do stuff like shopping. I tell her every day that I have appointments and it’s really difficult for me to be running around all of the time. Now I’m at the point where I’m going to have to be firm and tell her that I just don’t have the energy or health to be her one and only friend. I’ll let y’all know if I come home to some rabbit stew and her standing in my bathtub with a knife.

I have been working on making the changes to my diet to make it anti-inflammatory, and that includes experimenting with ingredients. Today I made crispy chicken, which was breaded with garbanzo and fava bean flour (okay) and coconut flour brownies (eh), and I’ve determined that coconut flour and my esophagus do not mix. I’ve tried three different recipes that are coconut flour-based and they burn going down every time. I don’t think it’s a true allergy because I don’t get hives or asthma, but it’s still unpleasant enough to stop trying to make it work.

Four doctors now at the University of Minnesota have told me that they don’t think I have late stage Lyme, and they’re not quite sure what I have. No one can figure out why the hell I can lay down and make the CSF move away from wherever it’s pressing on my brain and I can open my eyes again. I talked to my PCP today about the possibility of getting my shunt removed completely since it’s not draining properly anyway and it’s just causing me pain now. It will probably be another six months before I will be able to go under the knife for that one since I first have to jump through the hoops for the pain doctor. I finally got the letter for the NIH Rare Diseases unit from my PCP and started that process tonight. Now I’m back on the rare disease boat.

Last, and most exciting:

I am no longer on OKCupid. I mean, yeah, sure, I was getting some really nutty stories to pass along (and I certainly haven’t told them all yet), but it’s because The Saint Paul really is worth it. The Saint Paul is close to my age, never married, no children, heart of gold, helpful, accommodating, matching sense of humor, curious, well-read and liberal. He supports my feminist stances and most importantly does not view my body as “his” space, as so many men still do with women. We had the best first through fifth dates, the last one involving him taking me to his favorite animal shelter so I could pet kitties. (I brought a shirt in a plastic baggie that I could change into so I wouldn’t contaminate my jacket on the way home.)

Stay tuned for further developments on the love front.

New Diet, New Rules

I made the tastiest dinner tonight: chicken, carrots, ginger, garlic, brown rice flour and chicken bone broth, simmered and thickened so I could have it over brown rice.

What was missing? The dreaded dairy, gluten, soy and sugar, now possibly permanently banned from my diet. But let’s face it – those things are pretty difficult to avoid when going out to eat. Luckily I have my pocket-sized computer (phone) with internet access because there is a new app on the market that will help take the pain out of trying to socialize over a meal that may or may not be okay for me.

DineSafe is free to both the patrons and the restaurants. To participate, restaurants have to enter their menu items, which might sound labor-intensive, but here’s the great thing: they can put directly on the app which allergenic ingredients are included on each menu choice. I mean, who better would know which ingredients go into their food? This takes all of the guesswork out of the equation for the patrons.

For instance, maybe you are allergic to dairy, shellfish and mushrooms; the first thing you will be prompted to do when you enter the app is plug in all of the items you are allergic to. They have such a great list pre-programmed in, including dairy, peanut, gluten, garlic, soy and eggs, that most of the common allergens are available to choose. There is also a tab for specific diets, including vegetarian, vegan, paleo and organic. The creators did not skimp on categories! They are open to suggestions, so if you think that your allergen or diet are not represented, you can give them the feedback. I didn’t see sugar on the list so I’ll be giving them that suggestion. Sugar can hide out in simple things like salad dressings, and I’d like to make the most informed choice possible when someone else is preparing my meal.

The app can search for nearby locations according to your GPS position, but you can also ask for it to look in specific areas (great for when you’re meeting other people out and you’re trying to find a suitable restaurant). After all, most cultures have socialization built around meals; there’s no reason a person should have to give that up because of some restrictions.

The next step is to visit the restaurant on the app. The landing page has a pull-down menu that is a space where the restaurant has described its theme and atmosphere. You can go to an area that indicates which menu choices you should avoid. If you hop over to the next tab, you can see which items are safe for you to order. Lastly, there is an area to customize your order: if a dish contains mushrooms but everything else is “safe,” you can request no mushrooms on your order. By the time you are at the table and the server is ready to take your order, you’re prepared with a choice rather than having to quiz the server and send him/her back to the kitchen a few times. There is a flashing reminder on the landing page to advise the server of the allergies so they can expect a dish to be returned to the kitchen if something is included by mistake. (This leads me to another thought: Is there something in the point of sale terminal that the servers can enter to call attention to allergies for the kitchen staff, even if something like “Attention: Allergies” pops up in red above the “hold” items?)

I feel like we are overdue for an app like this. Right now I see listings for the Orlando, Florida area. What’s the best way to make sure restaurants are getting on board in your city? Load the app on your phone and talk to restaurant managers about the advantages of making their menu information available online including known allergens and diets, and consumers will feel empowered about choosing their products.

The app will also have an area built in where patrons can enter reviews. Part of my research on where to spend my money is influenced by reviews, as I’m sure the majority of people feel the same way. Now we’ll see things like, “I ordered a dry, unmarinated chicken breast, and I got exactly what I wanted,” or “We had to send the dish back three times because they kept putting peanuts on my pud Thai.”

Lastly, the U.S. is very slow about getting on board with safety – basically it’s up to patrons to be detectives and figure out if something is safe for them to eat. The UK and Europe have already passed laws regarding requirements to disclose allergens in sit-down and take-out establishments. We SHOULD have those laws here, but for now, we have to rely on our pocket computers to guide us. I look forward to using DineSafe when it reaches my area.

****This is a sponsored post for DineSafe.
******I was excited to talk about this app and its features anyway because my life is going to change drastically as a result of having these restrictions placed on my diet.

Serenity with Serenitea

I think anyone who has been reading my blog for any amount of time knows that I believe in a marriage between the hard-hitting Western medicine and the holistic approach of Eastern medicine. I am open to trying a long-term approach to feeling better if the problem is nagging vs. one that takes me down swiftly and completely. Right now I feel like the fatigue and bad sleep are more of a nuisance because I have bigger and badder things going on.

The company Premier Bioceuticals has various products to support certain areas of life, and I tried both the FibroCane Daily supplements and the Serenitea tea.

First, the FibroCane Daily: The label states that it is formulated to help “quiet symptoms associated with pain, stress and fatigue.” For the short amount of time I was taking it, I did notice a boost in my overall energy. Almost halfway through my bottle I had to have the ingredients evaluated by my naturopath because my entire regimen was revamped after I received my Lyme diagnosis. The FibroCane Daily has all kinds of good things including vitamins B12, C and D, but I was going to be receiving therapeutic doses via my naturopath’s plan, so I had to discontinue it. Especially with vitamins that are fat-soluble (B and D) and not water-soluble (vitamin C), you have to make sure that you don’t take in too much – they can build up in your fat cells and create a health crisis on top of what you are already dealing with. The water-soluble vitamins like C can be flushed out of your system with the rest of your waste in your urine so it’s more difficult to overdose on those.
Here is a copy of the label:

premeirbioceuticals_flat-3

The label is actually quite small in real life, so I had to request a digital copy so I could enlarge it for reading. Always consult a healthcare professional when you are adding to or changing your plan.

Second, the Serenitea: This is also a “FibroCane” product geared towards assisting to ease restlessness and promote relaxation. It states that it’s “Non-GMO, Organically Grown, Gluten Free, Caffeine Free.” This is an herb tea blend that includes holy basil, cardamom, chamomile, peppermint, rooibos, and even some stevia to sweeten it up for consumption. The best way to extract the most essence is to dunk a bag in about 8 ounces of boiling water, and then cover it and let it steep for 10 minutes. (Warning: Any tea left to steep for longer than recommended, whether it’s this product or any other brand, may result in a bitter taste – adios that bag when the time is up!)

The dietary changes I am making under great protest (no dairy, gluten, soy or sugar) have made me leery of anything that is supposed to be “supportive” to my system – because usually that means that it tastes like hair coloring chemicals or shoe leather to me. However, this tea is quite pleasant, and I very much appreciate the addition of the stevia to soften the taste of some of the herbs. It certainly is a nice way to wrap up the day, though I still tend to have squirrels romping through my brain – I guess there’s no tea for that yet!

Gaslighting

Drummer #2 was the absolute master of gaslighting. I keep a lot of emails – yes, even the really shitty exchanges I’ve had with boyfriends – and recently re-read a couple from Drummer #2. When I read his words, the shame felt nearly as intense as it did when I tried to break up with him for six months running in 2009. He worked hard on me to convince me that I was confused about what I was feeling. He was condescending and repeatedly told me that if I would just do things his way, I wouldn’t struggle so much. He told me that I wasn’t identifying my emotions correctly. It was exhausting. I was an emotional wreck. But just like this author, I finally got away, and I have never looked back and said, “Gee, maybe I should have stayed with him.”

___________________________________________________________________________

 

You know when you have a lightbulb moment, when you read something, spit out your coffee and suddenly go WHAT THE FUCK, WHAT, THIS IS EXACTLY LIKE READING ABOUT MYSELF! Well, I just spat out my cof…

Source: Gaslighting