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…
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. 
I 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.
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.
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.
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.
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/.
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.
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.
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:
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!
About a month ago, my fellow blogger Nikki (As I Live and Breathe, http://ilivebreathe.com/blab-archive/) and I started hosting sessions on Blab to talk about topics that concern us as patients with rare diseases and chronic diseases. We’ve had a lot of fun and have learned along the way what has worked and what hasn’t. Nikki also keeps seats on lockdown so we don’t have bullies show up on camera (though we can’t control trolls that come in and leave after they have said nasty, vile things). It’s pretty easy technology once you get the hang of it. I hope that you will consider joining us for our #SickadillyChat every Friday around 4 pm EST/1 pm PST (times sometimes change by an hour or two earlier if we have something that is going on – you can always subscribe to Nikki on Blab so you have the link for the show). If you are otherwise occupied, Nikki keeps a working list of our chats as they are recorded.
“Sickadilly,” according to the Urban Dictionary, means 1. To be fresh or poppin, or 2. To look beat. I mean, c’mon, we’re a little bit of both, aren’t we?
I consider us lucky to have the help of a few physician friends that Nikki has gotten to know well from her years of advocacy and education. Their enthusiasm and openness helps to keep us on the right track.
If you have ideas or topics you would like to cover, feel free to leave comments for Nikki or I. We also may approach people to join us, if they are able. We already have a running list of topics that we hope everyone will find interesting.
Here’s the latest one regarding apps and devices used to assist with your healthy living and healthcare from home, from February 26, 2016:
https://blab.im/nikkiseefeldt-sickadilly-chat-4-let-s-talk-about-tech-baby-ci-disab-rare-dis
Okay, first of all, a very specific search appeared on my radar yesterday: “Indian sites for compression hose fetish.” Hats off to your freak flag flying proudly, whomever you are. Also, hats off to wanting your objects of desire not to have to suffer from varicose veins. I’m sorry that my mention is probably repeatedly bringing you back to my blog; I wish you luck.
Second, I got a diagnosis.
I’m going to start where I think I should, and that is May of 2009. I was living with the very controlling and very violent Drummer #2 in a beautiful 3 bedroom/2 bath on a man-made lake. My friend who is a CPA and has taken care of my taxes for 16 years as of this year flew down from Cincinnati. Drummer #2 was on the verge of nearly smashing my head with a drinking glass, but I didn’t know it. He made me feel like absolute dirt because my friend was visiting, so much that the friend had to stay at a hotel rather than in the spacious home we occupied.
My friend rented a car so that we could run around the state of Arizona, and most importantly to the Grand Canyon. We hiked down into part of the canyon; it was not easy for me because I had already had fibromyalgia since I reached adulthood, but I did my best to keep up. I was so happy that my friend had made it down to visit, even though the nastiness of Drummer #2 put a damper on things. Drummer #2 didn’t accompany us and that was absolutely fine with me. I wanted to be able to relax. My friend flew home and life went back to walking on eggshells to try to not make Drummer #2 angry – which proved impossible. The week after that trip was when everything went down with the asshole and I moved out in a hurry.
Fast forward to October of 2009: I went to the emergency room because I developed a stiff neck and excruciating pain. Every time I moved my neck I cried. I didn’t sleep for four days and was starting to hallucinate. The ER doctor had no explanation for me because I didn’t have any other symptoms like a sore throat or a fever. He sent me on my way with muscle relaxants. The pain didn’t abate for a full week.
Around the same time, the naturopath I was seeing started documenting new symptoms for me, mainly that I had a constant rocking feeling, and I was always nauseated. We tried different remedies including Dramamine, but nothing even made a dent.
Have you thought up a diagnosis yet? Just wait.
In July 2010, I developed crushing fatigue. I drove over to San Diego mid-month to spend time with a man from Germany who made yearly trips to Comic-Con, the big one. I struggled to walk a few blocks between my hotel and nearby restaurants. He was used to walking up to ten miles a day; I felt a bit ashamed because I felt as if I embodied the lazy American stereotype. I was also plagued by deep bouts of vertigo to the point where I nearly fell down an entire outdoor cement staircase.
During the last week of the semester at school in July, I had to drop out and not take any finals. Fatigue and vertigo ruled my life. My parents were concerned because I spoke like a zombie, no intonation – very unusual considering I was a theater major in school. My speech was slurred, the top portion of my face became paralyzed, and my head began to nod uncontrollably. Because my body was under so much stress, my cortisol levels shot up to ten times the normal amount.
Have you guessed it yet?
In July of 2011, I finally started getting relief from the pressure in my head because a neurosurgeon installed a shunt. However, I had a total of 10 shunt surgeries in 46 months because my body fights them, clogs them, breaks them, strangles them. I have had horrible abdominal pain since July 11, 2011, because that is the first day a drainage catheter began living within my peritoneum and my small and large intestine, and there is a war being waged 24/7.
46 doctors and two states later, a naturopath in Saint Paul suggested I get some blood tests for Lyme disease. I ended up having to pay full price for them up front because they were not covered by insurance/medical assistance. I will admit that I didn’t think I had Lyme but I just wanted to rule it out like I had done with everything else up to that point. Two of the tests had inconclusive results; the third one lit up like a motherfucking Christmas tree.
I have late stage aka chronic Lyme, and have had it for nearly seven years. It wasn’t on anyone’s radar. Why should it be? I didn’t have a bull’s eye rash. I lived in Arizona, a state with a very small tick population compared to other states. The CDC has very strict guidelines about what can be reported for Lyme and I may not fit their parameters; however, I am still going to contact the state health board and let them know I was infected while I was a resident in the state. I think that only 8 cases have been reported to the CDC for Arizona. I don’t even know if they will take my data because I was diagnosed based on antibodies specific to bacterial exposure, and they only want tests showing the bacteria, which may not be detectable because of the time that has passed.
I know that most of the doctor visits and labs are not covered by insurance, so I will truly be destitute in short order. They are not covered because insurance companies and even the government get bucky about late stage/chronic Lyme, sometimes refusing to acknowledge it exists. There are now temporary laws in place in Minnesota that allow physicians to prescribe antibiotics far longer than they have before, for years instead of months, and the law is set to expire in 2019. I feel like my diagnosis is sitting on the cusp of being dismissed and being accepted. I don’t know how they will deny that my facial paralysis ties into the positive results on the blood work, but I’m sure they’ll find a way to tell me I just need counseling. It wouldn’t be the first time I heard that.
I don’t know what will be irreversible with the neurological problems when treatment starts. I think the facial palsy and ptosis may go away. I think the tremors will take years to adios if they stop at all. The left side of my body has lost some sensation. For example, when I am descending stairs, I have no concept of the pressure my foot exerts on the steps (and vice versa) and so must go very slow. I have been doing exercises to counteract the bed rest and try to gain some of the muscle I have lost, but I always feel like my nerves are disconnected on my left side, and I tire much more easily when I work on that side. I’m also having some cognitive difficulty including word recall. As I type, I fight to spell words correctly – I have developed some weird form of dyslexia. If you knew how particular I am about spelling, you would be as alarmed as I am. Sometimes it takes me a dozen tries to write single words correctly that would have been a breeze previously. Ultimately there is a 50/50 chance that treatment will work, and it may take years to get any positive results.
Besides notifying the board of health in Arizona and Minnesota, I have decided to write letters to my team of doctors in Arizona to let them know about the diagnosis. I am not trying not to think in terms of, “Oh, if only someone would have tested for Lyme, I wouldn’t have had to have 10 brain surgeries.” Honestly, the disease has really fucked up my body, and it’s possible I would have needed the surgeries even with the right diagnosis.
If my symptoms do abate, I’m going to have a serious conversation with some neurosurgeons about removing the current shunt. It has adhered to my chest and the abdominal pain is still constant, and I just think I would have an easier time without it. However, that also leaves me more vulnerable to CSF leaks – and I don’t ever, ever want that pain again.
Lastly, I don’t know if this is a “rare” disease. The data is poor. On a survey of health, chronic Lyme rated the worst for quality of life as outlined in this article – worse even than congestive heart failure, multiple sclerosis, fibromyalgia, diabetes and depression. In other words, I truly won the shit cookie.
Warning: Adult Language
The Shit Theory
Nashville (https://thesickandthedating.com/2016/01/18/i-saw-another-ghost/) sent me messages saying, “I’m sorry, please don’t be mad at me.” When I asked him why he ghosted me, he just said, “Don’t be mad” again. He “hates to fight.” Then he said he didn’t call me back for a few weeks because he “had his dog.” Zero explanation, unless that dog dials his phone for him. No response at all to my repeated asking of why he disappeared. I even resorted to saying, “Did my infection make you uncomfortable?” I mean, seriously, I would say the words for him if he couldn’t. But he couldn’t even respond to that. So I told him that if he can’t communicate with me, then there’s no point in seeing each other anymore.
I know he’s sleeping right now because he wakes up right before he has to go in for his third shift hours. When he wakes up, if he gets all whiny again, I’ve decided I’ll have to lay the shit theory on him. It’s something I’ve thought up just this afternoon that I think will explain what I see happening and what I think he needs to do.
Most of us who have had chronic illnesses for years (or even decades) are familiar with the “spoon theory” that a very clever woman came up with on the fly to teach her good friend about what it’s like to have a chronic condition that greatly affects the quality of life. Sufferers have even self-identified as “spoonies,” which makes it hella easy to find each other online.
I don’t expect this theory to find the same fame, but it would be funny if it did.
Okay, let’s say Nashville got up from a full 7 hours of sleep and did his business in the toilet, including a #2. (I know dudes are super regular like that, all of them that I’ve lived with are like clockwork.) But instead of flushing his shit down the toilet, he reaches down into the bowl and picks up the shit. He looks around the bathroom, and then he starts smearing. He gets a good amount on the floor and the shit cakes up a bit in the grout between the tiles. He also goes for the walls – big smears, maybe some letters. He even saves some shit for the sink and the dookie gets into the joints of the faucet handle. Nashville stands there for a minute, looks at the shit on his hands and fingers, and then yells for me. I come to the door, take one look and I say, “What the fuck, Nashville? Why did you smear shit all over the bathroom?” He says, “Don’t be mad at me. I have to go watch my dog wag her tail.” I say again, “Why the fuck did you smear shit all over every single part of the bathroom instead of just flushing it down the toilet like a healthy person?” Nashville says, “I don’t want you to be mad at me. Can you stop being mad at me? I love my dog.”
Nashville (as well as many people in general) claims he hates chaos. Chaos = shit, in this story. He could have just flushed the shit down the pipes. In other words, if you don’t want chaos, then don’t bring it into your world. You have a choice. If you choose to reach down into the bowl, cradle it in your hands and start smearing it around, it’s not okay to 1. Keep doing it until it’s in every nook and cranny of your life (no matter how much you B.S. yourself that you’re keeping it separate), and 2. Ask for someone to clean up the shit that you chose to spread. Certainly don’t ignore it (as Nashville did when he ignored my questions). All it’s gonna do is dry where it sits and be even harder to clean (aka all I’m going to do is get pissed, and he’s STILL going to have to deal with it). Sometimes a person has to hire a plumber (psychiatrist, psychologist or counselor) to help figure out clogs in the pipes (brain), but it’s better to take care of that sort of thing before the problem becomes completely out of control.
So, Nashville, the moral of the story is: Clean up your own shit.
The End
I’ve been on an opera kick this week. Puccini is my absolute favorite composer, so I’ve had that station going all week while I have read articles, organized my taxes, and for the first time have colored in my “adult coloring book.” I’m a little slow on trends sometimes.
I often don’t understand the meaning of the songs because who here speaks fluent Italian? Not I. But it certainly adds a little flavor to my tasks. Also, it’s the funniest thing to run across some slow-motion films of dogs wiping out in the sand or attempting and failing to catch treats or toys in their mouths – so dramatic when Maria Callas is wailing!
I was feeling very passionately that my OKCupid profile needed another revamp. Guys don’t care what I’m doing with my life or which books I’ve read or if I know all of the cool places to eat. They just want to know if I will go hunting and fishing with them (welcome to Minnesota) and if I can hook my ankles behind my ears. So I took all that crap out. This is what my profile says now:
MY SELF-SUMMARY
*******I’M ALLERGIC TO:********
– Hookups, FWB, DTF
– Threesomes, foursomes or moresomes
– All animals furred or feathered (even “hypoallergenic” animals), though I love them
– Misogynistic behavior
– Bad behavior and excuses
– Cheaters, liars, thieves
– Poor dental hygiene
– Conspiracy theorists
– Stalkers
– Contemporary country music, rap
– Republicans
– Being called “cutie”
– Organized religion or prayer
Almost immediately after posting these bullet points, a guy hit me up and said I was hilarious, and unfortunately, he was a hardcore Catholic and a Republican – but he really appreciated my sense of humor. We ended up having a really good chat through the site. He talked about his daughters, and how one of them was living with him as well as a nearly 2-year-old grandson. We chatted about the intricacies of finding and keeping a job that could pay the bills without the need to add another job. We talked a little bit about my disease and how it affected my ability to be social.
In all, a respectful, flowing conversation happened. Then I got an unexpected but very welcome call from my close friend in Arizona, and told the guy that I couldn’t chat because of the phone call. He said that was fine and posted his number, and I replied back with mine. He asked if I would be interested in a date. I thought what the hell, if we get along, we both could include each other in our circle of friends.
My call with my friend was pretty lively. She told me about the difficulties she had with men she had dated (or really, had minimal contact with) who kept calling and texting, even though she wasn’t interested and told them so. She told me how one had briefly been a professional MMA fighter, and took it upon himself to put her in a choke hold and then forced her to the floor. Another was a guy who couldn’t seem to accept the fact that she had gotten into a relationship with someone else instead of him, and even agreed to a double date so my friend could introduce him to our other friend – until he realized that my friend was also bringing her boyfriend.
My advice was that she must use small words and tell them why she is cutting them off, and then cut them off. First, they are not respecting her boundaries, and she does not owe them anything. Second, she needs to get her mind out of the space where women are required to be people pleasers and make sure they don’t anger men. That anger rears its ugly head when men think they are simply entitled to women’s bodies. How dare we reject them?
After we ended our call, I texted the dude and apologized for taking longer than I had planned. He called me “cutie” with a smiley face, just to piss me off. The next thing he did was tell me how beautiful my eyes are. I thanked him and told him I appreciated his complement, but I put more value in values than I do appearance. We discussed options for activities where I wouldn’t be up and out for too long (hopefully longer than a high five).
And then Hidden Creeper came out.
I was trying to discuss meeting places with him, and he kept talking about my appearance and how “cute” I am and that he just couldn’t help it. Then he asked me if he could kiss me.
In my head I was saying, “Hold on there, buddy – where in the hell did this come from, Mr. I’m-a-Hardcore-Catholic?” It doesn’t take a rocket scientist to figure out that him talking about kissing me is his code for testing me to see if he can go balls deep. It happens all of the time.
I told him that if we both felt attracted to the other person, then sure, we can have a smooch. But I also told him that I didn’t want to discuss it further, because it has been my experience that if all you do is talk about what you want to do with the other person once you have entered their personal space, and then you actually meet, it doesn’t end well. Sometimes there’s no attraction from one or both parties. but then they feel obligated to ______ because it was talked about. I told him that I wanted to make sure we’re not getting ahead of ourselves.
He replied with, “Ok sounds good” and then stopped texting me. So I still have no idea if this date is going to happen, but my guess is that it won’t.
I feel the change in personality happened as soon as we started communicating off of OKCupid and that is because he knows I could easily block him there and he would have no idea how find me. Luckily I can push his calls and texts to spam if I get some on my cell, but he doesn’t know that. I just feel sorry for his daughters. He revealed to me that his oldest daughter moved back in with him because she’s 24, has a 2-year-old, is kind of lost, and the baby’s daddy is an asshole who took off. I want to shake him and say, “He took off because you didn’t teach your daughter how to value herself, or she may never have let him in in the first place.”
Being able to look at everything and process it in a much healthier way than I have in the past is my present to myself. I’m not perfect, but I’m getting better. I wish everyone else luck, would like to remind you that it sometimes takes effort to get on the right track, and keep holding yourself and other people accountable.
Yesterday didn’t strike me as being especially significant. It wasn’t a holiday and my rare disease wasn’t cured, so…
Okay, first of all, I’m paying more attention to the things that bring people to this little blog – and I do mean little. Six months ago I was lucky to get three visitors in a single day. Now my number of visitors is increasing because of the ways that I am networking with other bloggers and the content that I am including.
Nothing could prepare me for some of the search terms indicated by the program, though. (You’re welcome.)
*where does horny women hang in nashville
*fragile handle with care advertise porn
*pantyhose kik names
*stocking fetish social sites in India
Congratulations, and let your freak flag fly. There’s no way for me to identify the people making these searches. I have to point out, though – no one searched for hot, bald, unmarried women?? I mean, it’s been a while since I’ve been proposed to by a total stranger. I hope that issue remedies itself shortly.
In the evening yesterday I took the short bus to a guided meditation session held in a health crisis center. I wasn’t sure how it would go because I tend to just kind of throw my hands up in the air and then rush onto the next thing, whatever that is, to keep my brain stimulated because I get bored easily. During the actual meditation, which really only lasted about 20 minutes, I had to fight against dozing off twice, and luckily I didn’t snore or accidentally pas gas.
Twice I saw an orb rise out of a pool. I only “saw” it to the left of my left eye. I told some of the attendees during our recap about my experience and let them know that their vibes had a specific effect on me. One woman asked me if I had always been able to read strangers’ energy. I have, but I have never really put effort into following through on what I read; usually I push it away or ignore it, which is actually very destructive because then everything gets a free pass into my life and I end up hip deep in crap.
Whatever happened, the universe made a connection appear for me. My short bus driver made a stop after mine to pick up a lady in a wheelchair. She greeted me when she was lifted into the van, and immediately we started chatting. I asked her if she had just come from a dance performance because the building she had come out of was a theater specifically set up for that purpose. The answer was no, in fact; she was on the board for VSA Minnesota, the “state organization on arts and disability” (I got that from the website).
I told her a bit about my arts background as well as what I’m doing now (which is admittedly very little because my days are consumed by endless doctor appointments), and she gave me three organizations to get involved with besides her own to network, meet new people, be creative, and maybe even apply for a grant in my area of interest.
To the casual observer, this may not seem to be a big deal. It just drove home to me the fact that this state is so much more inclusive than where I moved from. I never, ever would have had so many resources to access for my particular physical challenges if I would have stayed in Arizona. I wouldn’t have been able to even ride the short bus because of their strict rules regarding who should be allowed to ride.
Really, meeting and speaking to that woman last night helped to open my eyes to the fact that even though I’ve got these major problems, I might actually be able to find a group of people who can see art where others may only see injury and illness. I am still working on retraining my brain to accept this as my new reality because the doctors have refused to keep operating on me. I still really miss driving my car while harmonizing at the top of my lungs.
The Sick and the Dating 