April 10, 2015, was the last day I commuted home from a paying job. It was the last day I was on a dreaded conference call with a bunch of frustrated staff members. It was a Friday, and only three weeks into a contracting job after being laid off from a place where I had worked for over twelve years. I was already nervous about surviving because work had been interrupted by so many shunt surgeries prior to that time, but April 10th was the final straw.

I remember driving home during rush hour and having the familiar “lights out” sensation cloud my vision. I was only working about 8 miles from home, but since it was rush hour, it would take at least 45 minutes, and the darkness squeezed in almost right after I got behind the wheel. It took all my energy to focus on my lane and not crash into anyone else. I don’t even remember how I made it to the hospital after that, which was another 7 miles in the opposite direction. But I remember having to call my boss the next day to tell him that I would never be coming back in; they wouldn’t hold a short contract position indefinitely.

I wasn’t even sure my neurosurgeon would do surgery #10 in less than 4 years at that point. He had already said after #9 back in November that if I failed again, he was not willing to operate. But he did – sort of. He only did half of the surgery. And of course it failed. And then he sent me away, telling me I had to figure out what was the source of the problem, because he wasn’t going to continue doing something that was going to keep failing. It was all being put on me.

I did figure it out. It took me from 2010 to 2017 and 65 doctors to put all of the pieces together, not to mention the fact that I am one person, not even an entire lab or radiology department. I got zero support from the NIH’s Undiagnosed Diseases Network. The Minnesota Board of Health decided not to discipline 3 doctors (among many) who falsified information to get out of treating me. The Mayo Clinic banned me so I wouldn’t hurt their success statistics and change their #1 in the nation status in 21+ areas.

I lost everything: my car, my house, my ability to earn a livable wage, my confidence, my sense of security and self-worth, friendships, independence, and every last penny of my financial reserves. Thank goodness I already lost my hair over 15 years ago because if I had to go through that right now I’d absolutely lose my shit.

After filing three years ago, I finally had my disability hearing on Wednesday the 28th of March. I didn’t know what to expect. My attorney pulled me into a small conference room prior to the hearing and prepped me, telling me that if the judge asked me questions, to not take longer than 15-20 seconds to answer, and to speak up because he was older and may be hard of hearing. I was also told it may go as long as an hour.

But five minutes, and we were done. Long enough to read my name, and say that it was obvious I was disabled and not making anything up. The letters I asked Dr. Afrin and my current immunologist write for me were key for my case and noted in the judgment. The judge also specifically said that the way I was treated by the majority of the 65 doctors was appalling.

What’s next? I have to wait for Social Security to process the judge’s ruling, and then enter my info for payment, and like the Kool-Aid man, all you’ll see is my silhouette – I’m busting outta here. I gave Minnesota a fair shake for three years, but the fact that so many doctors lied in my medical records and refused to treat me has made my decision an easy one. I’ve decided to head back to Arizona where I will pick up again with 8 of the doctors I previously had; only a few will be switched out, including getting in with a neurologist who specializes in MCAS and Ehlers-Danlos. (Minnesota is a great place to be employed as a nurse, because they are paid relatively well, but it’s a horrible place to be a patient, and I’m far from being the only person who feels this way.)

I want to be clear about what this disability status means for me: 1) It doesn’t change any day-to-day abilities that I have. I still have to lay down and rest for the majority of my day, about 20 hours every day. 2) The actual status of disability is not permanent; I’ll be reviewed and my medical records will be combed through every few years by Social Security to make sure my health and abilities haven’t changed. 3) I still have to take the short bus everywhere, especially now since I’ll be making “too much” to get medical assistance (which is more than $0.00). 4) I still can’t get a motorized scooter – do you really want a half-blind person driving one of those??

My prediction is that this is all going to go down by the end of May, but I’m at the mercy of Social Security.

Product Review: Visbiome

When people who don’t know me well ask what I do, I tell them I’m a professional patient. When I detect a slightly pitying look cross their faces, I tell them it’s not so bad, because I get to review products like this – and truly, I count myself lucky to have access to them since I have limited means at this time. 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.


Visbiome is a high potency probiotic targeted specifically to be used for patients who suffer from ulcerative colitis, irritable bowel syndrome and pouchitis. I suffer from irritable bowel syndrome and was clinically diagnosed after a colonoscopy in 2011, but for years before that my body vacillated between diarrhea and constipation without a whole lot of predictability. I know that in general my body likes protein and veggies and punishes me for eating carbs, simple sugars and fatty foods. In other words, I won’t be heading to the infamous Minnesota State Fair anytime soon, where they brag about having deep fried Coca-Cola as a “thing.” That would lay me low for ages.

However, knowing these things, my diet isn’t perfect. I’m bed bound because of major issues with CSF getting caught around my brain stem and I’m allergic to the shunts that have been implanted and failed, so long story short, it’s impossible for me to go to the grocery store every third day for fresh produce. I also can’t spend a lot of time standing and prepping, so I eat a lot of stuff that’s pre-cut and frozen. I have also become an expert on which protein bars don’t taste like sawdust but also don’t have a high sugar content.

So, Visbiome to the rescue! As you can see from the picture, the living bacteria – 112.5 billion per capsule – is incredibly high. For that reason you must plan on storing this product in the fridge at all times so the capsules don’t lose their potency. I was shipped a 30-day supply and it was packed in ice packs in a cooler, and this will be the norm when you order it. In fact, it will be smarter for you to ship it to a location where you can unpack it and get it in your fridge as quickly as possible, so if you know you’re going to be gone from home for 14 hours, maybe it’s smarter to ship to work instead.

The recommendation on the labeling is for this product to be administered under the supervision of a doctor. This is important because because of the extremely high bacterial count in each capsule. You will undoubtedly notice a change in your digestion and bowel movements. If you experience diarrhea for an extended amount of time or other undesired effects, your doctor will advise you to either change the frequency of the dose, the amount, or to stop it altogether. Your best health is always the ultimate goal.

I read the enclosed pamphlet and it indicated that for IBS I should take 2 capsules daily. I opted to take both at the same time because I tend to be forgetful when I’m taking new medications, especially if they are only meant to be taken for a few weeks. Some of my fellow bloggers had good results splitting their doses up throughout the day.

Wouldn’t you know it? Right in the middle of my doses, I managed to get a nasty case of flu. Five days later I developed fluid in my ears which churned into two very nasty ear infections, at which point I had to go on antibiotics so my ear drums wouldn’t perforate. A few days later I also developed bronchitis. I actually think I was quite lucky to be on the Visbiome at this time because the antibiotics were guaranteed to kill off anything good growing in my gut, but this product could re-introduce some helpful bacteria. I’m also terribly prone to yeast infections, and I think that taking Visbiome helped a bit with me not having to be so miserable in my lady parts.

The term “medical food” is a new one to me but I decided to look it up because I think we will be seeing more of it. This is the definition per the FDA:
“The term medical food, as defined in section 5(b) of the Orphan Drug Act (21 U.S.C. 360ee (b) (3)) is ‘a food which is formulated to be consumed or administered enterally under the supervision of a physician and which is intended for the specific dietary management of a disease or condition for which distinctive nutritional requirements, based on recognized scientific principles, are established by medical evaluation.'”

Please visit Visbiome’s site and pass it along to your healthcare professionals so they can review all of the product’s benefits.

The Boyfriend Invasion

The Saint Paul and I have been dating for two and a half months now. Our first date was many hours long, so many that we approximated it to be the equivalent of four dates. We’ve had many dates since then where we’ve had up to fourteen hours together until I’m physically holding my eyelids up with my fingers and he’s stumbling into his shoes to go home. We’ve also fallen into the habit of not going more than three days without seeing each other. But we’ve never had a full-on sleep-over; he’s always gone home.

I live in a historic area of St. Paul, Minnesota, and every year on the first Sunday of June there is a celebration called Grand Old Days that includes music, food vendors, a parade, artists and sports/health vendors. Attendance has been anywhere between 170,000 and 270,000, and attendees can even print a bus pass for certain routes to park and ride to this area for free. It has gotten so large that this year they have expanded the festival to the whole weekend instead of just Sunday. My flat just happens to be right next to one of the sound stages – and I’ve checked the lineup, doesn’t look promising.

Healthy me would have been absolutely thrilled. This is the stuff I used to live for, and it’s right at my front door. But the new me has to come to terms with the fact that I can’t walk a couple of miles or stand for hours to listen to live music or spend money on food and pottery. The thought of trying to navigate throngs of people while my brain is being squeezed and my eyes are drooping gives me extra anxiety. If I’m being completely honest I can whine and say that it’s not fair, but then who in the world can I blame that on?

The Saint Paul has opted to come over Friday night so he can score a parking spot and not have to stress about it after that. We might run out to get a few groceries, which will require us planning out meals for two whole days together, and then he’ll head home Sunday night. He’s going to try to borrow a camp chair for the parade, since I have my own already – we have to stake out a place on the sidewalk along the parade route pretty early in the morning Sunday, because it’s going to get gnarly. We’re fully expecting drunks to be trying to get into my building or to be peeing in our planters or every barfing in every doorway. I’ve heard stories. Non-food businesses are now in the habit of shutting down completely for this festival.

Other things take planning too. I’ve suggested that he bring over his favorite pillow to help him sleep better (because we all know that makes a huge difference when sleeping in unfamiliar territory). Sometimes I wake up coughing because of acid reflux, so I kind of have to be ready to move to my couch (five steps from my bed) if I think I can’t get back to sleep right away. And to hear The Saint Paul tell it, he flops around like a fish when he sleeps, which does not bode well for me, the ultimate light sleeper.

Most importantly, 48 hours together guarantees that there is going to be poo involved. Knowing my GI tract means there’s going to be multiple incidents each day. I have a brand new bottle coming that should be arriving just in time for Friday that is ruby red grapefruit-scented that may prolong my relationship with The Saint Paul. I am telling you, every house should have PooPourri because everyone poops, and no one wants to die by Lysol or any other chemical stuff that you spray in the air that makes it smell like you shit out a pine tree. I cannot say enough good things about this product. Buy it. You spritz it in the toilet bowl before you unload your load, and all is right in the world.

Lastly, most of my lounging and sleeping when I am solo in my flat is done sans hair. My wigs are just not at all comfortable, and wearing them in bed actually wrecks the fibers. So The Saint Paul is going to get a full dose of me au natural, and I have warned him that once I have taken them off in his presence, I will probably lose all motivation to wear them all of the time. I like how I look in them, but they are so damned scratchy and uncomfortable, plus wearing them less will also help me to be able to keep them longer since I have no money coming in. So for your viewing pleasure, here is (a very dirty) Mr. Clean taking your day to a whole different level:

Stick It Where The Sun Don’t Shine

I rarely count myself lucky to have an alphabet of ailments, but this is one of those times – namely because I was offered the opportunity to try the Luxe Bidet Neo 185 in exchange for a fair and objective review for you, dear readers, through the Chronic Illness Bloggers network. As per the usual, please know that even though the product was a gift, all the opinions in this review are my own and I was in no way influenced by the company. I’m going to tell you that you can look away if you don’t poop, but since you and I both know you do, you might as well keep reading.

I B.S. you not, I suffer from some crazy IBS – irritable bowel syndrome. Sometimes I’m on a dead run from my bed to my toilet, which is a whole ten steps, because my bowels have decided they want to release the Kraken…again…for the fourth time in five hours. There are times when I have wished I could hose myself down after every episode. There are times toilet paper has felt like rows of shark teeth because I’m wiping my poor abused bottom for the umpteenth time. I think I responded within 30 seconds of this being offered to our group because I was wishing for it and it suddenly appeared.
2016-05-17 17.32.39

I am confident with putting mechanical stuff together, but not so much plumbing (though I did once take apart my kitchen sink in Phoenix). I talked my step-dad into installing this gadget when he was in town on babysitting duty with my mom for my nephews one weekend. We put a bucket under the water line after we turned off the water during the transition, which I strongly recommend you do as well. He asked me to note in the review that he wished that the part connecting the water lines was metal rather than plastic. In fact, this entire unit is plastic with the exception of the water line, probably to keep costs contained. It took him about 5-10 minutes to get everything set up correctly.
2016-05-17 14.16.06

Now for the good stuff! Wait, wait – I live in a really old building dating from approximately 1910, and who knows how old the toilet is (I didn’t look at the lid for a date), so just know that I thoroughly cleaned the toilet before photos. I take no responsibility for decades of filth and disrepair from previous tenants. It even looks like some half-wit tried to flush grout at some point, but there’s not much I can do about that. Onward ho.

When I told my step-dad that I would be including pictures with this review, he squealed with laughter. I think he was disappointed when I sternly said I wouldn’t be posting those pictures. But then he squealed again when we discussed the fact that the water was coming directly from the pipes without being heated first.

So here’s the logistics: I’ve included a copy of the card with the instructions because I had to read them a few times myself first before using the Luxe Bidet Neo 185. It can be a little intimidating to have something pressure washing an area that only a few boyfriends and GI doctors have had intimate knowledge of. After the first few tries, you shouldn’t need a queue card.
2016-05-17 17.33.19

Basically, the “second nozzle” in this scenario refers to whether or not you are a girl person and your parts are located in an area that would benefit from a nozzle that reaches forward further than the other one taking care of the brick layer.

For my first sit-down, I was a little scared. I knew that water would be chilly. There was a good chance my apartment neighbors would hear me whooping and hollering from the startling freeze-out of my back door. I’ve been trying to think of the best way of describing it, and all I can come up with is that it feels like someone is trying to suddenly and quickly stuff freezing cold cotton balls up my keister – maybe Lucille Ball or Carol Burnett were somehow acting out a skit with my hiney as the punchline?? All I can say is that you just need to rip the band-aid off and get through the initial try, because you’ll get used to it.

As far as the “second nozzle” and girlhood goes, I found that if I sit upright, it doesn’t do me much good. However, if I lean forward, then more of my bits get cleaned – but again, with the shockingly cold water.

Look, this does the job. I really have gotten away from using those demon “flushable” wipes. They have been deceptive with their marketing. Entire communities are becoming backed up because Charmin and Cottonelle and their knockoff competitors have created these heavily perfumed wipes that don’t actually disintegrate when they’re flushed; besides that, your parts don’t fare well with all of that perfume hanging out on your bits. I am trying not to be that person in my very old building who clogs up the pipes (though I have managed to collect everyone else’s hairballs in my sinks and tubs and plumbers have made numerous visits here). I have sent these wipes packing like ex-boyfriends that I have also grossly misjudged.

Back to the bidet. Here is what it looks like with the lid closed:
2016-05-17 14.15.54
The device is actually installed so it is attached between the bowl and the seat so it stays secured:
2016-05-17 14.16.38

As promised, I did not take pics of the bidet in action on my tushie, but I did take pics of the “nozzle cleaning” mode:
2016-05-17 14.18.09
(Where the bubbles appear in the bowl is where the water is shooting out of the water feed, presumably so the nozzles can have “debris” power washed out.)

If you are interested in purchasing this product, it is offered where anything in the universe is offered, on Amazon (and don’t forget to select your favorite charity through smile.amazon.com so that a certain percentage of your purchase is donated by the company every time): http://www.amazon.com/dp/B00P2XZDGG

You can also go directly to their website for any product information: http://luxebidet.com/

I have to say that I will be trying to hang onto this product for as long as I can.