The Best Little Gift Guide

I used to pride myself on being able to find little things – and big things – that seemed like a perfect fit as gifts. I would look or listen for clues. Okay, maybe sometimes I wouldn’t get it quite right, but at least I would try. My shopping would take place over the course of the entire year and during festivals and trips, because you never know when you will stumble on something unique that screams “_____!” (Use your imagination.)

But times are different. It seems like the majority of the people I know are much more careful about how and where they spend their money because of various constraints or social awareness. I have to be careful too; I no longer have an income, so no extra money to spend during the holidays. This list that I’m going to lay out is for someone – like me – who has little or no income, who might not be able to buy much of anything anymore.

1. Time. This is a big one, and it’s free! I simply can’t get out and socialize like I used to, because my body has put a hard stop on that. Sometimes I don’t want to be by myself. I love it when people visit or call, but I don’t always initiate stuff like that because I don’t want to be a burden. There’s nothing worse than a whiny-ass friend constantly saying “Pay attention to me,” right?

2. Gift cards. Conventional manners/wisdom say that giving gift cards is tacky because then people will know how much you spent on them, yadda yadda yadda. Bullshit. I love gift cards. I especially love them when my entire monthly budget has gone to rent/utility/medications and I have nothing left over to buy groceries, and I have a lovely gift card to the rescue.

3. Wheels. Man, I miss driving. I miss those Saturday mornings when I would get up at 8 am and run around until 11 am and go to about 8 different places and get all of my shit done. Now I ride the short bus and I can only go one place, and it takes me 2-3 hours. And it’s a drag. And I never know who’s going to be with me and if it’s going to be a bat out of hell drive. I would love it if I could have a whole morning of driving around for errands, like dropping off my recycled clothing/rags, recycled toner cartridges, disposing of hazardous waste, petting animals at the humane society, recycling old medications, getting 5 favorites from Trader Joe’s and 6 favorites from Hy-Vee and 4 organics from Aldi. As a side note, disabled people like to recycle too. It’s just that we can’t easily get to these locations and facilities. Plus, me getting out to do these things instead of doing them for me means I get to get out. (As a side note, I have discovered that more than a few people have assumed that the short bus is free. It’s not. It’s actually more expensive than the regular bus. Each round trip for me is nearly $10. It’s really, really expensive when you have no money coming in at all.)

4. Independence. My oldest sister made up a list of modified items that would have made her life easier, like rounded chopping knives that were easier to grip. We were puzzled at the time; it didn’t seem like fun, especially for Christmas. She had debilitating MS and was bedridden because she had lost the use of her legs and some of the finer motor skills of her fingers and hands. Looking back, and living what I am now, I understand that ignoring her list and insisting that we only get her “fun” stuff was a huge mistake. It is not only fun but a huge relief to get everything you ask for and need. So if someone asks for a modified chopping knife, get them the chopping knife.

5. Entertainment. I’m a movie/TV snob. I don’t like most sitcoms because there’s a lot of yelling involved. I also don’t watch cartoons. I know what I like, and I’m a binge watcher! I’m a loyal customer of Netflix, Hulu, and Amazon Plus. Yes, all three. They have some overlap, but there are some things that don’t appear on all three, and Hulu allows me to watch network shows that aired the night before. If you love me or someone like me who is in bed a lot, give the gift of streaming entertainment. I guarantee you it will be used. (Side note: I’ve tried reading. I used to be a voracious reader. Because of brain damage and eye problems, I don’t read much right now. Zero memory and attention span. Squirrel!!)
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6. Amazon. This deserves its own category. I have used Amazon for vitamins, durable medical equipment (that was not covered by my insurance), ingredients to make my own deodorant/antiperspirant, and tons of OTC medication like Benadryl and Pepcid, which I take megadoses of. Of course, I use Amazon Prime too, so I get the movies, and it comes automatically with the music service too. Another great thing is that if you purchase through Smile.Amazon.com and designate a charity to receive 0.5% of your total spent, you can automatically make donations. I don’t have money to donate to any causes, so it still makes me feel as if I’m making a contribution, even if I can’t hand anyone cash. So you will never go wrong with an Amazon gift card.

7. Skin. Disabled people like luxury stuff too. Not everyone wants to smell like an Avon or Dove whorehouse or litter box. A little company called Villainess was just purchased by a new owner and sold out within a few days of its new stock because everyone was so excited to dive back into its soaps, lotions and scrubs. I’m telling you, their stuff is sooooooooo yummy. I just got 3 of their jars of lotions. I’m going to wait to open the jars until I feel really poor because it should be used within 2 months of opening (less preservatives = better for your body) and I want to stretch them out. So keep an eye on them, and put in an order and make someone feel extra special.

Another great place with amazing combinations is Black Phoenix Alchemy Lab. I’ve had some bottles for 2-3 years because I have enough to rotate them around and not smell the same every day. You can buy samples (“Imps Ears“) instead of full bottles, but if you are sure you are going to like all of the flavors that they list, go ahead and buy a whole bottle. I have very rarely been disappointed. Buying scents for other people is a crap shoot, so be very cautious! I’m deathly allergic to lavender and patchouli. Anybody can be allergic to anything. If you aren’t sure, there are always gift certificates.

8. Pain control. I reviewed two different lotions in my blog, and I recommend them both: Mo’s Dream Cream and Invigorate. You can’t go wrong with either of them.

The Oska Pulse is a device that is a financial investment, to be sure, but it has a 30-day money back guarantee, and I use mine every day – because there isn’t a part on my body, somewhere, that isn’t hurting. Sometimes I end up using it six or seven times on that part. I’m just grateful to have it because I always end up feeling better. (It is important to note that it shouldn’t be used around any medical devices that are surgically implanted that could be affected by magnets, like shunts, stimulators or pacemakers. My shunt is strictly all silicone because I’m allergic to nickel.)

9. Massage. I go to a massage therapist once a month. There have been a couple of times where I have second-guessed myself and the wisdom of going, especially when I’ve had to shell out extra for medications and money is getting low, but when I’m on the table and getting worked on, I know I need it. First, it’s hard on my body to be in bed so much. Second, I rarely ever have any physical contact with anyone else. The massage is it.

10. Activism. I can’t do all of the work. Literally, I can’t do all of the work. The best gift you can give people that you don’t even know personally is to tell your elected officials that disabled people need housing, healthcare, transportation and good nutrition. I’m still waiting for housing that I was promised 8 months ago; it would mean that I would have things like grab bars, instead of constantly falling in the shower, and affordable rent, instead of paying full price on zero income (still no disability income after nearly 3 years of filing). Do not buy into this idea that everyone who is disabled should be punished.

Honorable Mention:
Check out The Unchargeables for a variety of chronic/invisible/rare diseases for gear – you can even look for items according to the disease! I checked my alphabetized list and they have a few of mine in there. Pretty impressive! And for each disease, there’s a bunch of items, so you’re not limited to just a t-shirt or bracelet.

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Suffering For Art

 


Yesterday I posted this article on my Facebook page, indicating there are certain entertainers I won’t support even on Netflix/Hulu/Amazon because they still receive royalties. I won’t even check out their movies from the library.

I was subjected to “Annie Hall” my freshman year in college. Woody Allen is a whiny fuckhead criminal, and I don’t understand why people, especially women, keep clamoring to work with him. Who does he remind me of? The abusive guy who doesn’t live downstairs anymore. I have paid attention to the trailers of Woody’s subsequent films, and quite frankly, they have nothing to offer beyond what we have already seen. Who keeps saying he’s a genius? Other men who want to bang underage girls.

One of my friends agonized over the fact that “great artists” might be shitty people. And by “shitty people,” he means that they probably rape and molest women and/or girls and/or boys. But, by god, look at their art! What would we miss out on if they didn’t do all of those things to other people! So the conclusion that this friend came to is that we should still support and admire the art – works by Salinger, Brando, Led Zeppelin, The Doors, Mailer, Eliot, the list goes on.

My answer is no. I’ve never seen any of The Godfather movies. I’ve never lingered on a Pollack painting. Never read Salinger. When I find out that someone is a douchebag, I drop them like a hot mess. I will never again laugh or relate to a Cosby joke. He drugged women to fuck them, and then, you know, blamed them or tried to gaslight them.

Another friend who jumped in on the conversation jokingly said that he would support the art if he could pirate the material rather than outright buy it. But he would still miss the art too much if he had to give it up because he loved it too much; he was a huge John Lennon fan, and that outweighed any bad behavior.

What is especially disturbing is that the second friend wrote up a little speech during the first wave of #MeToo posts, saying he became aware of how unsafe women feel after a female friend asked, “But is it safe for me to go there by myself?” He expected and received a lot of accolades. But he and the other guy were pissed at me for this post about not supporting assholes and criminals. I mean, they both apologized for offending me, but only after speeches about why I shouldn’t be mad. Don’t be mad, brah. We’re just flawed and we don’t want to stop bad behavior if it results in good art.

We all attended the arts high school together. I’m always surprised and then disappointed when I think that we’ve all evolved at the same rate, because we had this really great experience, and I’m proven wrong. I’m a harpy now. Why can’t I be all cool about loving the art and understand that men will be men and suffer and need salvation – but know until then, they are going to beat and rape women and children?

I’m just wondering when I stopped deserving to be safe. Is it because I’m an artist and I should expect violence from other artists for the sake of art? Is it because I’m disabled and I should be thankful for whatever comes my way? Where is the motherfucking disconnect?

I’d much rather throw my money and my spirit at artists who aren’t shitty people. For instance, I like Sara Bareillas. I’m pretty sure we’re not going to be reading any shockers about her. I also like X Ambassadors. Have you heard about their partnership with No Barriers for the Renegade Scholarship Fund? “The organization helps people embark on a quest to contribute their absolute best to the world. From middle and high school students, to adults with disabilities including wounded veterans, the organization serves people of all backgrounds and abilities united by a common desire to live purposefully despite the barriers in our way.” And since I live across the street from the art gallery my sister manages, there is an endless stream of local visual artists I get to talk to and take pictures of their goods to post online for social media.

There are so many opportunities to support positive artists, both living and dead, that I don’t feel the need to give my attention or money to those who destroy others. I don’t accept the status quo. I don’t go along with the idea that I should like them or their art just because they are “classic” or “geniuses.” Now that we have the internet, we have access to so much more material. Besides, last time I checked, The Doors aren’t putting out any new songs.

Ring Around The Rosie

I don’t know if you knew this, but the old nursery rhyme “Ring around the rosie, pocket full of posies, ashes, ashes, we all fall down!” is about the black plague.

Or, actually, it isn’t, according to Snopes.

I think about it this time of year, while I maneuver my way through hoards of people who don’t cover their mouths when they cough, or if they do, they immediately touch the door handle I was just reaching for. The Plague. Everyone is just waiting to infect me, I know it.

I’ve been having a hell of a time just getting a flu shot. Until two years ago, I never got one. Then they started making an egg-free version, meaning they didn’t grow them in an egg base as the very cheap food source. Now they also make the shot preservative free. It’s the holy grail for me since I’m allergic to raw eggs AND preservatives. However, my PCP’s office won’t order it for me. They insisted I call my insurance company, but the insurance company told me they couldn’t tell how it would be billed (as in, would there be a special code for an egg-free and preservative-free flu shot?), so I’m supposed to get the code from the doctor’s office. The PCP’s office doesn’t know how to bill for the shot unless the insurance company knows how it should be submitted, otherwise I’ll have to pay out of pocket. So…………

Scratch all that. I just talked to Walgreen’s, and they have an egg-free, preservative-free flu shot on hand, and I just have to show proof of my medical assistance. So guess who’s getting a flu shot from Walgreen’s?

This is the reason why not having preservatives is a big deal.

I’ve been giving myself Humira injections since August 30th to combat hidradenitis suppurativa outbreaks that I’ve been experiencing for about the last 8 years. It’s another autoimmune disease that up to around 2 years ago, not much was known about. I’m not going to spill all here, but trust me when I say that it’s super, SUPER painful. And doctors were cutting infections out of me, but because of mast cell activation syndrome, the lidocaine they were using wasn’t numbing me, so I would feel every slice. Before the HS was diagnosed, all of the doctors didn’t understand why I was getting the infections, and they thought that it was something that I was doing wrong – not bathing properly (HA!), wearing the wrong clothing (HA!), shaving inappropriately (because I don’t grow hair – ???? – HA!).

The treatments for HS include getting monthly injections of steroids in the normally infected areas – which I don’t know anyone who would go for that – or using oral and topical antibiotics, which I’m allergic to. The last resort is Humira.

The bitch of it is that I’m also allergic to the Humira shots. On August 30th I did the first loading dose of 4 shots. I didn’t have a reaction until 10 days after that, so it took me a while to catch on, and the reaction showed up only on my legs and not my stomach.

So I thought, okay, there was no reaction to the two shots in my abdomen. I’ll just get my abdomen with the next two shots. Besides, doing the injections in my legs hurt like a bitch. But then:
20170915_190958(Keep in mind I never show my stomach to anyone. The zipper scar you see running from my belly button is the extra large cut my neurosurgeon had to do on 12/21/13 when he didn’t have anyone assisting him on that surgery, which is the one where he finally saw my abdomen with his own eyes and remarked how it looked like a war zone inside and acknowledged my allergy to the shunt.)

So these two welts showed up the same day as the injection, and hung around until the Monday after – about 5 days. After the itching stops the welts turn into huge bruises.

I called the manufacturers of Humira to report my reaction. I knew immediately what the problem was before I even called. They make the shot shelf-stable for up to 14 days so that if you have to travel or lose power, you can still use it without it needing a refrigerator. Conclusion: preservatives. Specifically, there are 8 of them in the medication. When I talked to the company, they said the FDA approved them ONLY to make the formula with the 8 preservatives. It’s possible they might release a formula with only 2 preservatives in 2018, but they are still waiting for the final approval from the FDA. They cannot allow me to take another form of Humira with less preservatives because it’s only approved for use in the U.S. with the 8 preservatives.

I have to stay on it. If I go off of it, it immediately loses its effectiveness by 20-30% for the rest of my life within the first 2 weeks of discontinuing it.

Humira does lower my immune response. I’m already compromised because of my non-existent IgG3 and IgG4, so I have to be extra cautious. I’ve noticed that I’m much more fatigued than normal while I’m on this juice. The maid doesn’t get a whole lot done these days, know what I’m sayin’?

Usually my stomach doesn’t see the light of day unless it’s the surgeon operating on me (you can see another horizontal scar on the right pic above), but this is the reality of the mast cell disease. If you don’t know me and you see me clawing at my belly in public, now you understand why. I really do want to rip my skin off.

Two days ago I woke up for another appointment and my entire upper half was covered in hives. In this pic you can also see the shunt protruding because of all of the scar tissue that is growing around it. The rate it’s growing is highly unusual; the doctors are seeing in 3 weeks what they would normally see in 20 years. But I have no freaking idea why I woke up with the hives because nothing in my routine has changed as far as I know:
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One thing that ended up on my good list is that I discovered that I’m not allergic to potato chips! Some of the other MCAS patients were discussing them in a group and so I took a chance and snuck some at a party – plain, salted – and didn’t develop hives, and didn’t lose the inside lining of my mouth or develop sores. The other crazy upside is that because I have POTS, I’m also encouraged to eat higher quantities of sodium so my blood pressure doesn’t dip too low. So, people, I am rediscovering Ruffles! I haven’t had them for decades! But they have to be strictly plain/salted, no other flavors including vinegar. It’s a nice change from the 8 foods I’ve been stuck with.

That Time I Went Back To Arizona

About five months ago, I decided fuck it, I’m going back to Arizona to visit. I miss everyone and everything. A few weeks after that, I figured out what started this whole thing with my brain. (Yes, I mean figured it out, not the doctors.) I knew I’d have a place to stay with friends, and eating out was out of the question, so I’d just have to come up with a plane ticket. Done. It might be my last opportunity to travel depending on how much worse the scar tissue and the brain damage gets – literally no one fucking knows.

I have about 35-40 people that I would have liked to have seen, but I was only there for about 8 full days, so it was impossible. One night a bunch of people came over and we had a little potluck and hung out. The rest of the time everyone was gracious enough to drive to me, or I took the short bus to see them.

It was my first time traveling without being able to drive, either at home or my destination. First of all, nothing can happen on a whim. It took me about 2.5 weeks to assemble all of my medications and a vog mask, and that included negotiating with the insurance company to get an override on 8 of my medications that would have needed refills while I was gone but couldn’t get in Arizona – they can only be done in Minnesota, because I’m on medical assistance. I also had to make a trip to a compounding pharmacy.

Then the day before I left, a medication I had been trying to get for about 7 weeks was finally approved, so I had to go and get that – but it was such a high volume that there was no way I was going to be able to fit it in my luggage, so I decided to start it after my return. Every time I have to go somewhere, I have to request a ride from Metro Mobility – but I’m only allowed to call one to four days ahead of time. I can’t call on the same day. So I was on a dead run (or as much as I could have been for someone who is half blind) up to the day I left.

It was so worth it, though. Arizona was all blue skies. As I’m writing this, we’re getting rain in Minnesota.

Hopefully my friends know I love them, but I forgot to take pictures of them. Apparently I shoved them aside and made a beeline straight for their animals, which I am deathly allergic to. I did a little planning for that too. One of my doctor visits beforehand was to get my regular and steroid inhalers refilled so I could start on those prior to my visit. I also packed extra diphenhydramine and Claritin (above the 12x daily dose I already take) in anticipation of the fur balls, and every time I came home from a house with pets I changed clothes and put the contaminated clothes into a plastic bag and did a big scrub down.

First were the rescued baby kittens, all black except for a few white spots on some bellies. My friend was just grabbing and distributing them around the bunch of us, and I just happened to get my soul mate – a little one who has neurological problems. It just wanted to get as close to me as possible so it curled up tight against my neck and slept. Once in a while I felt it have tremors and twitches that were not at all normal. I was laying back so the fluid wasn’t trapped in my cranium, and I swear, it was heaven. I wanted to stay there forever. At one point the kitten woke up and started putting its little paws right on my mouth. (I’m in the blue.) I did get hives, but they may not have been as bad as they could have been because apparently the night before the kittens pooped all over each other and so they had to have an impromptu bath, which they loudly protested.

Back at my host family’s house, a large lizard showed up on their property wall. Usually they do not get this big!
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I was lucky enough to be able to spend two afternoons with my friend and his wife. He was instrumental in getting me to be active on Twitter after reading my blogs, which has led to guest spots on other blogs, podcasts, and our Blab series (now deceased because they couldn’t figure out how to make money off of the platform). These two are quite funny; the male, bright orange, is loud and LOVES women. The female, green, is a lot more quiet but likes to ring her bell ball to communicate. The male will say both of their names together and then swivel his body from side to side when he is showing off or pleased.
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Next were my good friends including a couple and their live-in mom. They were usually the first ones I would call when I needed a kitty fix while I lived in Arizona – they had three kitties I knew well. Within the past year and a half they ended up adding another cat and dog under pretty terrible circumstances. Their friends relocated from another state; my friends didn’t realize there was drug addiction and abuse happening. The kids have since been placed in foster care, and the animals were traumatized. Actually, the really big, long, grey kitty seems mostly okay, but the dog has suffered terribly.

When I came to visit, I was told to expect him to pace and whimper. I was also told that I shouldn’t expect him to eat, or approach me, because anyone else who has visited hasn’t had any success even though they were animal lovers too. So this poor, beautiful dog did start pacing. I made sure that I moved slowly, and told him that he was a good boy whenever he paused to look at me. Then I put two treats on the back of the sofa and turned away from them, and eventually he worked up the nerve to get close enough to take the treats. Then he paced close enough to smell my hands while I wasn’t looking, and then quickly paced away again. While this was going on, he was carefully watching how I was interacting with each cat, making sure I wasn’t mean. A couple of times I closed my eyes. I suspect my friends thought I was tired, but I was actually sending him messages of love.

We sat down to dinner, and I couldn’t eat part of mine because of an allergy, so I put it down on a plate for the dog. Another win! And he came over multiple times to sniff my fingers. I made sure again to not be aggressive. I told him over and over he was good.

I stayed long enough to go on his last walk of the evening, which he loves. He wasn’t even confused about there being a strange lady with him on the walk until one point where he crossed over to me and then suddenly was like, “Holy shit, who is this???” and then quickly walked on the other side of the sidewalk.

At the end of the night I was saying goodnight to everyone (read: handing out the last pets to the pets), and the dog was near when I was petting the pretty calico. He was again watching very intently to see if I was being mean. So I carefully got down on all fours and made myself small, put a treat in my hand, and put my head down, and HE ATE OUT OF MY HAND. Everyone was stunned and thrilled.

My friends ran me back to where I was staying, and let me know that when they returned home, all of their animals were lined up at the door, as if they were waiting for me to return. They had never seen that happen before.

The last evening before I flew home, I was able to visit with a former co-worker whom I had the longest work history with – something like 8 years together on our team. I also remember when she had her kiddos – vividly! Our conversation went something like:
Her: “I feel like something isn’t right.”
Me: “You’re in labor. Go have your baby.”
Her: “I’m not really sure. I’m going to wait a little longer.”
Me: “I don’t think you should wait. I think you should go.”
45 minutes later: Baby.

They have two cats and a dog. I failed to catch a photo of the dog, but she was a sweetie. The white cat, Gracie, is quite elderly now, and doesn’t put up with anyone’s shit, including the dog’s. The kissy photo was taken right before Gracie got pissy about the dog bothering her. Seamus is a year-old instigator of trouble and very handsome.

Obviously the mast cell disease is preventing me from being a crazy cat/dog/bird lady, so I suppose I should be thankful.

Anyway, it was really difficult to come back to Minnesota. The night I flew home, my friend’s little boy called me and told me to come back. Sheesh, kid – right in the feels.

Back To Life, Back To Reality

I had the pleasure of planning my arts high school’s 25th reunion for my classmates. It’s difficult to explain, but our school was unlike any other that most people have attended. It’s a public school and we came from all over the state of Minnesota, we had to audition or submit portfolios as well as letters of recommendation, we lived on campus like a college, and we created life-long friendships (most of us). I’m not saying it was without flaws. But going to college was a complete let-down because we already did it all, and our skills were senior level when we went to our respective schools post-high school.

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The reunion officially lasted nine hours. We started with performances, some dancing, I handed out random door prizes (which included ramen, Pop Tarts or macaroni and cheese plus sticks of margarine but NOT milk – because we never had milk; also Nerf guns, and cassette tapes such as Crash Test Dummies, The Sundays, REM, M.C. Hammer, Bullet Boys, anything that would have been released by 1992). Then we headed over to a pub that served microbrews and sausages where whomever couldn’t make it to the portion at school hung out with us there. We were officially done at 10 pm, but some people wanted to keep partying, so they went back to one couple’s hotel room and kept it going until 4 am. I didn’t – I was toast.

(By the way, the picture with the classmates trying to pull open the doors is something I didn’t find out about until later. They were giving themselves a tour, not realizing that they locked themselves in an area and they would have to wait for someone to randomly walk by and let them out.)

Our turnout was excellent. My classmates are literally scattered around the U.S. and the globe. I haven’t lived in Minnesota for 20 years and would have been counted as an out-of-towner if I hadn’t been forced to move back because of my circumstances. I know that I have classmates in Sweden, South Africa, the UK and France for sure, but I’m also sure that I’m missing some places. So to have this many show up is considered a small victory. And everyone was helpful, mostly sober and didn’t want to leave.

When I was attending school here, my major was theater (located directly to the right of the dancing space where everyone is slapping hands and their shoes are off). I discovered there that I had a natural affinity for organization and detail. So that was the reason that I gave everyone for wanting to organize the 25th reunion.

But I had an ulterior motive.  Two years ago, and even continuing through to today, a lot of the classmates that traveled back for the reunion (either by driving or flying) have helped me. When I relocated from Phoenix to St. Paul, they contributed to a fund. Sometimes they organize and send me gifts. A lot of them have their own hardships to worry about, so I appreciate their contributions even more for that reason. So the fact that I could work out every damn detail for them and all they had to do is show up was great – and even better that they all had a really great time and didn’t want to leave. 

Unfortunately, I did have to ask for some work from a few of them, but being the wonderful people that they are, they stepped up and said of course, and blew the rest of us away. The school was under great scrutiny and was nearly closed, and I had gone to all of the state senators and representatives, asking them to come to about an hour and a half of our reunion to meet us to see what had become of one of the first graduating classes from this school. One of the representatives, Mike Freiberg, happened to be a classically trained pianist and agreed to accompany our opera singer – and wow! It was fantastic! In all, we had two writers, a violinist, an opera singer, and a dance instructor.

Pictured below is an example of many of the lockers – students are allowed to paint them however they choose. Also, the woman in the phone booth is one of the readers from the performances. The phone booth is an infamous one; it was down the road from us and is from before the advent of cell phones, and we all used to walk down the road to use it when we wanted privacy. 


So for the week after the reunion, I stayed in bed. It was totally worth it. I love these people. Some of them I’m lucky enough to see frequently, and some I suppose I’ll have to wait another 25 years to see, but we know we had a unique experience and kinda feel sorry for people who had to drag through regular schools. We had a completely amazing experience for our junior and senior years.

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Today, I had a doctor’s appointment for an outpatient surgical procedure. I’m not going to go into detail for what it was. I was just dreading it. So I got the usual notification from the cab company that the driver was on his way, and then I got a notification that he was outside. So I went out. He wasn’t out there. Sometimes it happens that the notification comes about 60 seconds before the cab. I wasn’t alarmed.

However, after waiting for about 12 minutes, the cab still didn’t show. Today the temp was 91 degrees Farenheit, and Minnesota is humid this time of year. Also a problem: My high-rent building’s front door was vandalized, so I can’t actually get in with my key. If I want to enter the building, I have to walk around to the back, which is the equivalent of walking the length of a city block because the spaces between the buildings are fenced and locked off. I also had no idea when this cab was going to show. So I called the cab company.

They claimed he was five minutes away. I have a GPS tracking map and he hadn’t moved. I explained that the heat makes my condition worse. I also can’t go back inside because I can’t go in the front. They told me to just wait. This is what happens to me because the cerebrospinal fluid builds up in my cranium because my shunt hasn’t worked for two years:

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Many times my facial droop has been mistaken for myasthenia gravis. I can assure you that I do not have that. I can actually slosh my CSF around, and when I tilt my head parallel to the floor, the paralysis goes away within seconds. Also, my face is not swollen. The muscles on the left have relaxed because they are paralyzed.

I was actually stuck out in the heat for a total of 35 minutes. When the driver finally got there, he first tried to force me to cross the road to him. I can’t see very well like this – this is as far as my eyes will open. When he finally came to my side of the road, he parked up the street so I had to walk to him, even though there were spots open in front of me. When I got in the car, I asked him to turn on the air conditioning. He told me I had to wait until he “got going.”

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When he finally did turn on the a/c, it was at the lowest setting to spite me. I had to tip over in the back seat to take the pressure off of my head, which at that point was absolutely unbearable.

When I got to my appointment, they took me back to the exam room and got me on the table. However, I wasn’t doing so well. The nurse and the PA both said I looked grey and the PA reclined the table while the nurse ran to get me some sugary drink. I whipped off my wig and they slapped wet cloths on my neck and head. I could tell my pulse was all over the place, but I knew this wasn’t a blood sugar problem – those feel completely different to me. [I am getting checked for POTS next month.] When I got up from the table, I saw that I had completely soaked through the paper with my sweat, which was disgusting, but they said it was an obvious sign that I was in distress. We made sure everything had returned to normal and we got on with it.

I absolutely wrote up a complaint to the cab company, with details and times. They have a contract with my insurance company, and if this driver can’t handle medical rides, he shouldn’t get them. Period. 

Big Help In A Little Package – TechCare Pro24 Ultimate Massager Review

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. 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.

Back in 2007, I had a beast of a knee operation. My right patella (“knee cap”) was tracking wrong, meaning it was slightly dislocated, so it would cause all kinds of problems as I bent and straightened my leg and my patella slid all over the place – but not exactly where it should have. I also had damage to the underlying cartilage. Before surgery I was required to go through months of physical therapy to strengthen the surrounding muscles, and after surgery of course I had to recover. It took me a year to straighten my leg.

Anyone who has been through orthopedic surgery has had a run-in with a TENS unit. I was issued a big, black carrying case with a handle, multiple square pads and a control box with a dial. The controller had an on/off switch and the dial to change the intensity of the charge, and that’s it – no frills. You got what you got.

I didn’t have any expectations with this TechCare Pro24 Ultimate Massager, deliberately.
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In actuality, I was pleasantly surprised. The controller feels like it’s made of high quality metal, not cheap plastic. It has the capability of running two lead lines at a time, though the user can choose to run one lead at a time. The lead lines themselves are considerably long, which is useful if you need to reach around to the back of your body for any reason (which, if you’re anything like me, you will).
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I’ve been trying to walk outside while the weather has been cooperating, because I’m trying to get stronger. I have a lot of joint pain because of fibromyalgia, plus I’m in bed a lot to keep the pressure off of my brain, but the downside is that the rest of my body pays the price. Since I’m walking outside there’s a lot of variation in the elevation and terrain and my muscles and joints very quickly and loudly rebel. It’s the perfect time to put the TechCare Pro24 Ultimate Massager to the test.

I want to pick the right size of pad according to where on my body I want to attach the pads. This unit comes with three sizes:
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I chose to work on my right hip, which never fails to make its presence known. The big, rectangular pads are the best for that area of my body, so I decided to slap one on my back right flank, and then one on the top of my right femur.

The TechCare Pro24 Ultimate Massager doesn’t run on willpower alone; it needs actual electricity to roll. I’m always in front of my laptop, so I chose the option to hook up the unit to the USB portal for the juice.
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So as I had everything hooked up and charging, the next step was to choose the actual mode that would work best for what I wanted to accomplish, which would be to relax my right hip. I pushed the slide button over on the top so that the unit turned on, and then I could see the different choices for the massages for the most helpful option. Every time a different mode out of the six options are chosen, the strength returns to the lowest intensity so that the user can change it to his or her most tolerable level. I think this is a good thing because some modes felt more stinging than others, depending on the intensity.
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My favorite option that I found for my hip is the one that appears with the number “1” in this picture. As you can see, I didn’t even have to go to half intensity to feel the effects. The timer starts at 15 minutes but can be reprogrammed all the way up to 60 minutes.

At one point a friend called during one of my sessions, and I was so relaxed that he asked me if he had awakened me from a nap.

I did try it on other areas of my body – my neck, my left shoulder, my right quadriceps – and I tried out the other modes. The best thing to do is try the modes and strengths and find the best combination of style and length of time, because there’s no one-size-fits-all like there used to be with the old TENS units.

One extra goody that is included in the package is a chart of the human body and suggestions of where to place the pads to relieve certain pains.

This TechCare Pro24 Ultimate Massager is light years past that unit I had to use ten years ago for my knee rehab, and is much more affordable to boot. You can find it here – check it out!

Pat, I’d Like To Solve The Puzzle

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This week I’ve been taking care of stuff; taking care of me by walking to make myself stronger, taking care of medical records, taking care of clogs in my sinks and taking care of throwing out excess trash. It’s the medical records that sent into emotional pits, though. I was angry after reviewing a bunch of misinformation and it was rolling around in my head. But then I had an epiphany.

Back when I started having operations on my cranium, when my shunts were relocated from my back to my brain, my neurosurgeon remarked that my meninges were incredibly tough to break through. I don’t believe he’s ever noted that on my medical records, though. But his memory is like a steel trap so if I went back to him, he will probably be able to recall it with certainty. It certainly stuck with me. He said he had only seen it once before in his lifetime.

And then there was this published paper by Jonathan Kipnis where he explains that he and his team discovered lymphatic drainage vessels in the cranium. They weren’t known about before because when autopsies and dissections were performed, the lymphatic vessels were torn and destroyed because of their fragility. This paper was published in July of 2015; I traded emails with Jonathan in November of 2015. He explained that he doesn’t actually work with humans in clinical trials so he couldn’t help me, but after I connected the dots this week, I emailed him. I’m not sure I’ll hear from him.

Lastly, I have this mast cell activation disease diagnosis from Dr. Afrin. When I saw him in January, he told me that my outrageously high histamine level is probably what is making everything change and grow into scar tissue, including the tumor, as well as the tract along the shunt.

So here’s what I think is happening: Back in 2010 when I first started having the really bad symptoms, the meninges had already turned tough because of my high histamine levels, and the fluid can’t drain properly into the lymphatic drainage vessels like it normally would. That’s why I need shunts. The shitty part is that I’m allergic to the shunts. Just as an aside, this whole time I thought that the underlying cause was an autoimmune disease, but of course I had no idea what it would be.

So what now? That’s the question my mom asked. The tissue that has changed cannot be changed back. There is nothing on the market that I’m not allergic to. I’m at a high risk for aneurysm or stroke. This is going to kill me, there’s just no telling when. I mean really, who else do you know that is going through this? None of my doctors would be able to begin to guess.

Of course, I have to check with my doctors…but again, I’m the one leading them, not the other way around, which is almost always the way it is with rare disease. First I’ll see the neurologist and explain all of this to her, and hand her Dr. Afrin’s notes and Dr. Kipnis’ notes. I’ll see Dr. Afrin in August. After that, I’ll contact my neurosurgeon in Phoenix and roll this past him. I hope that he remembers that I was right about everything that I told him, even though some things took as much as 2.5 years to admit.

So for now I’m still waiting for my disability hearing. I talked to my attorney’s office and they called the person who sets the dates for the hearings, and they were told that hearings were being set for 18-22 months past the appeal filing. My last appeal was filed in February of 2016 (the initial filing was April 2015), so by the time I’m in front of a judge, I’ll have been waiting for nearly 3 years. Every state is different. I can’t get a rush unless I’m homeless, stage IV cancer, a danger to myself, or I have no access to care.

So I wait.  

Retrain My Brain – Gupta Amygdala Retraining Programme Review

People often ask me just what it is that I do with all of my time now that I’m stuck in bed. I love writing and I count myself lucky to have been included in the Chronic Illness Bloggers network, and given many opportunities to try products I wouldn’t otherwise have access to. 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.

This particular series, The Gupta Amygdala Retraining Programme, is being offered by a doctor who was laid low by chronic fatigue syndrome (which I will shorten to the commonly known acronym CFS), which is also referred to as myalgic encephalomyelitis (the acronym ME for short). The Centers for Disease Control states: “CFS is a debilitating and complex disorder characterized by profound fatigue that is not improved by bed rest and that may be worsened by physical or mental activity. Symptoms affect several body systems and may include weakness, muscle pain, impaired memory and/or mental concentration, and insomnia, which can result in reduced participation in daily activities.” (https://www.cdc.gov/cfs/) The CDC also indicates on their site that despite trying their best to figure out what triggers CFS, they haven’t pinpointed the cause. It could be a number of infections, it could be autoimmune related, it could be something in the central nervous system; they’re just not certain.

I was given this program because I have fibromyalgia. Fibromyalgia shares some of the CFS/ME qualities – mainly crushing fatigue and pain that does not go away with a good night’s sleep. Dealing with constant pain and fatigue also changes your brain and your outlook, affecting the way that you interact with the people around you, as well as your ability to handle your own sickness, or wellness, as it were.

The very first thing I noticed when I opened up my packet was this map from Dr. Gupta.
20170522_092902If you can’t tell, this piece is quite large and almost covers my entire area rug. As we found out, it is an interactive practice piece that you actually stand on and use to help retrain your brain to stop negative thinking.

The other items included in the package were a workbook and a set of audio and video DVDs.
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I was signed up for weekly interactive web meetings as well. In our first meeting, we were introduced to Dr. Gupta, and informed that the web meetings were actually the most important part of the program, and that the DVDs, workbook and practice poster were supporting materials.

The web meetings were 12 weeks long total, so it is quite a commitment if you decide to join the program. And there is a lot of material to cover. However, if you think about it, some of us have been sick for years. I’ve been sick for two decades. 12 weeks is really a drop in the bucket. It’s just a matter of adjusting your schedule and making room, just as you would for a physical workout program. You want to lose the weight? You do an hour at the gym. You want to lose the disease? You do a few hours a week at the Gupta program. 

So what is amygdala retraining? Basically, it’s to stop the negative feedback loop so you can start healing. Your body feels bad, so your mind gets stuck thinking, “I’m not good enough, I don’t don’t deserve friends if I’m going to bring them down, I don’t deserve love, I’m a terrible person, I’m a loser, I can’t do anything right, I hate my body, I’m going to stay sick forever,” etc. If you can get rid of that negative feedback, you can also retrain your brain to start a positive flow of thoughts, including, “I will allow my body to relax, I will feel comfort, I will smile, I’m choosing health and happiness, I trust myself.”

And back to that interactive poster that’s on the ground: That’s the “Stop! Stop! Stop!” technique that Dr. Gupta often refers to as part of the retraining. He encouraged us through the course of the initial training to actually follow the steps on the poster: think the negative thoughts, then hold out our hands and think or say, “Stop! Stop! Stop!” Then we would breathe and smile, return to our loving self, then choose to take the loving path and be kinder to ourselves in our thinking, then visualize health and happiness. We would repeat these steps over and over again – at first slowly, then faster, as if picking up anything that feels clunky at first but then suddenly becomes second nature.

Throughout his sessions he often took breaks for us to breathe, or meditate. We also had time to ask questions or interact. Dr. Gupta warned us that there would be times when emotions would bubble up and sometimes get the best of us. I tend to be pretty stoic except when it comes to dealing with my neurologist and neurosurgeons, so I was surprised when even I had a web session that affected me emotionally. The point is to not hold everything back so that our ego doesn’t get in the way of getting better.

The DVDs and audio CDs are helpful because there are some meditations included, and meditation is one area where I always need improvement and assistance.

Dr. Gupta does advise for anyone going through this program that the changes will be gradual, and to not expect anything earth-shattering immediately; after all, anything shocking would set us back, not make us better. Six months would be a good goal for feeling a significant improvement if you do the work with sincerity. 

I’m grateful to have these materials at hand for the long haul so I can refer back to them as often as I need to – because there’s so much to learn, and I’ll definitely need a refresher from time to time. And Dr. Gupta records all of his sessions so that we may go back and rewatch (or if you couldn’t make it to the session in real time, you can watch at your convenience). I did personally notice a certain calmness and lightness after each session, and I do feel like my attitude has shifted towards all of my diseases; I’m choosing right now to be loved and to be worthy of love, and maybe that will shift again in the near future to another positive focus as I journey on.

Dr. Gupta’s Website:  http://www.guptaprogramme.com/

Is It Time For A Vacation Yet?

I’d like to take some time off from my daily life. I’m not sure if that’s allowed, since I have loads of time off already – my only job is to rest and get ready for the next doctor appointment. But still, I’d like to look at something other than these four walls. In fact, I’d like my old life back and a reason to take a vacation. 

Anyway, yesterday was my birthday, and a couple of friends flew up from Colorado, and we decided to brave the largest art event in the U.S. – the Art-a-Whirl in Northeast Minneapolis. What was happening in one warehouse would have covered what most cities considered an arts festival, but this event takes over miles. We just stayed within the limits of where the complimentary trolley traveled. Even with the trolley my phone tracked 7,000 steps for me yesterday. That’s a personal record (and comes with a cost, because I’ll be in bed for most of the week with the exception of one appointment tomorrow morning and Wednesday morning). My legs were having none of it. They were starting to spasm in the last building we visited.

I did pick up one little piece of art, which reminds me of a line I’ve heard over and over in my dating life:
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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.