bald woman

Here’s Some Words And Some More Words

Posted on by akiwifreund

Well, even though I have tried to stay off of OKCupid, the fresh meat flag is still flying and the messages keep rolling in.

There are a few issues that I see repeating. One is that if I don’t reply within a few hours, the guys will block me. It’s either because they think I’m a robot (which always makes me laugh because robots always post pics that look like porn stars, not me) or that they want an answer NOW and if I don’t answer NOW then they aren’t going to WASTE THEIR TIME ON A BITCH LIKE ME. Another problem is that there’s always the guys who go into copy and paste mode and send the same message to everyone. I honestly don’t know if women respond; I mean, they must at some point, because men keep doing it, but I got this gem today that really didn’t make a whole lot of sense.

First, some background: This guy is a 72% match to me and 31% enemy, and at the end he said under the phrase on his profile “You should message me if”: “You are open minded and want to have fun.. You should also be 100% Active.. Keep it Spontaneous..”

So before I give you his correspondence, just know that the line “you want to have fun” rubs me the wrong way. Duh, dude – we all like to have fun. But that’s incredibly subjective. I happen to think going to an animal shelter and petting all of the cats and dogs that I’m allergic to is fun because it could kill me but I miss being around them, but that might not be everyone’s cup of tea. And the random capitalization of words and incorrect usage of ellipses is making my eyes burn. Now, on with the show.

“The truth will set us free so here goes.. Many people are uptight about race and gender the truth of the matter is they wouldn’t know a real man if he were standing right in front of them, many people are just foolish especially about something they have no knowledge about so before you jump to conclusions I want you to meet a man who has experience and knowledge➡Many relationships fall apart not only because of lack of communication but lack of understanding what true love really is.➡Love is feeling truly happy with another person, blissfully happy, as if time has stopped and you two are the only ones still moving, when you feel truly comfortable with them, when you know that you can spend the rest of your life with that one person, because there is no one you would rather be with… You cannot necessarily define love, but you will know it when you feel it because it will feel so amazing😉 that’s love.. ”

Let’s break this down.
1) Why is he talking about race and gender in relation to what a “real man” is?
2) What is this so-called elusive “experience and knowledge”?
3) If this guy is so certain he has experienced the holy grail of love and knows what it feels like, why is he on a dating website still looking for it?
4) He said there was no way to define love, but that was after he defined love.
5) He’s just talking at me (or anyone he sends this to). Since he’s not actually asking anything and there’s no indication that he’s read my profile, I’m pretty sure that lets me off the hook for replying to him.
6) What’s his fucking point?

Please, Sir, May I Have Some More?

Posted on by akiwifreund

My parents’ generation were the product of parents who lived through the Great Depression. My grandparents had to be creative with their resources; the flour companies started making pretty prints on their flour sacks once they figured out that mothers across America were using the sacks to make dresses. Re-purposing so that nothing went to waste, our grandparents were also guilty of turning their yards and barns into trash heaps. They were fearful of throwing anything away in case it would be needed in the future.

My parents’ generation, the baby boomer generation, turned around and said to their kids, “I’m going to give you everything I didn’t have,” which really meant that they wanted their kids to have new stuff. This started a trend of some of my classmates actually having cars being purchased for them, or having college tuition being paid for them, and by middle class – not wealthy – parents. Credit cards also started circulating heavily and regulations became non-existent, making it incredibly easy to rack up debt.

Now my peers are struggling to make ends meet and are in debt up to their ears while still providing cars and tuition and pocket-sized computers to their children as if they are staples, not privileges.

There’s a lot of talk about going back to basics and scaling back, while also teaching our children about how to manage money and understanding the consequences of debt.

I’m in a different kind of quandary, however. I need to figure out how to be poor. I mean really, really poor, in the current system – not what it was, and not what we wish it would be.

Back in 1995 when I took the road trip around the U.S. to pick a new place to live and ran out of money and said, “Okay, Albuquerque!”, I was poor. I landed with $100 and slept on someone’s futon for a month. But I was also able-bodied and picked up two jobs and moved into an apartment within a few weeks. I still had times where I lived off of $10 a week for groceries, but this is a little different. This is finite.

I sat down with the financial planner at my bank and figured out the rest of my bills for this year. However, I’m really stressing about my bed. It’s sagging and I can feel the springs poking through even with a thick foam topper – really bad for my fibromyalgia – and it’s only a year and a half old, and I’ve worn through it because I’m in bed for about 20-22 hours every day. Sleep Number is running a sale right now through September 11th and I could replace this bed for about $1100 including their least expensive base, and that would take care of the springs issue and would probably last 6-10 years. Do I buy it? Or does buying it now put me that much closer to eviction next year? If I’m evicted, what am I going to do with the bed? If I get housing at some point down the line, I’m going to need it again, uncontaminated by mold/dust/dander because of my mast cell disease.

I’ve had alopecia since the age of 3, and I lost my hair completely 14 years ago. There is a 30% off sale going on right now, which would give me a considerable discount on the wig I usually wear. Should I get that instead of a bed (it’s much less expensive)? Should I just give up on wigs now anyway because if I’m evicted next year for non-payment I won’t be able to afford them anyway and I don’t deserve to be so vain?

I have enough in my account to get me through to November of 2017. I’m a worrier by nature. All I can think about is, what am I going to do if I get turned down for disability? I mean, I hope the disability hearing happens by November 2017, because I filed for it in February 2016, and they are running 18-22 months behind (but just in case I have my senator flagging this case as “congressional interest”). Priority housing is given to people who are verified as disabled or who have children; if I am not verified as disabled (because I don’t have a diagnosis) and I don’t have children, I won’t have enough “points” to qualify for housing. All of my friends and family have pets and I’m deathly allergic, so moving in with them is not an option.

I’m concerned about both my mom’s health and my mom and step-dad’s financial stability, and my step-mom’s husband’s health and their financial stability. I’m concerned about my sister’s health and her family’s financial well-being. I’m concerned about my brother’s brand new baby who is due in the next few weeks and his little family’s financial stability. I recognize that they all have grave concerns of their own while they try to shield me from them and simultaneously try to take care of me. Certainly none of them can afford to pay for another adult’s living expenses.

I receive notices from friends telling me that I should support certain causes. I’ve said repeatedly that I don’t have any income and I won’t for at least another year, if at all, but they take “income” to mean working income. They just assume that I receive disability, even though I’ve said repeatedly and clearly that I’ve been turned down for disability numerous times. It wears me out to worry about being homeless, and I’m pretty overwhelmed by all the stuff I have to do to further my own cause since all of the offers of help were not really followed up on except by a select few, and it’s humiliating that I have to repeat myself to be heard.

This weekend I had a former fuck buddy hit me up out of the blue after years of silence to try to give me shit about moving back to my home state, mocking me about my claim that I was done with snow and cold when I moved to Arizona in 2003. I told him that I was pretty fucking sick and had stumped 54 doctors so far and could no longer live without assistance; he said he was working on three hangovers and he was sorry I was sick. He loves to talk about how he’s tired of welfare assholes, and I’m sure he thinks I’m one now too. We can’t even really have a conversation with each other anymore because in his eyes as well as in the view of the government, I have no value.

So where is the class that teaches me to navigate being homeless on the streets in a snow state? Do I get a free map to all of the soup kitchens? Where’s the best place to stash my cart outside while I warm up and surf the net in the library? How do I make a shank?

I’m Bad, Like Michael Jackson

Posted on by akiwifreund

This afternoon I went to a dentist appointment that I knew would be stressful, physically. The plan was that we would be “seating” my two crowns on the bottom left. Last week one of the temps fell off and I was told by the receptionist that even though I was in pain from the exposed bone/nerve that I had to wait until my appointment today because they had no time to see me. There was also a hole in the other temp that managed to stay on but obviously did not do a lick of good for the entire 26 days of its existence.

So when I sat down, the dentist and assistant said, “So how about we also get to the catastrophic crack on the right too?” That meant that my entire bottom jaw had to be numbed. The dentist started putting the numbing gel on the back left corner, but we both knew it was just for show. He was in a hurry and soon he was bracing his body to go for the stubborn juncture between my upper and lower jaw; I saw the trace of satisfaction on his face when I moaned, the tendon in my jaw yielded and the needle felt as if it went all the way through to my ear. After doing about a dozen injections along the inner and outer borders of my gum line on the left, he attacked the right, and decided he didn’t want to slow down to make me the least bit comfortable with numbing gel. This time I had tears running out of the corners of my eyes while the assistant shouted that I was doing great. Not a few times I thought to myself that this is either the office that they send patients who are super duper tough, or they send patients who they don’t give a damn about beating up.

Still, it’s important to keep your sense of humor as a patient, or so I think to myself. This is my reasoning every time when I am preparing to be pummeled by a member of the healthcare community. I always think that if I can somehow appeal to their humanity that they will see me not as a number or as cattle, but as a human with feelings and needs.

While we sat and waited for me to lose my ability to speak, some Michael Jackson came over the sound system. Just as the dentist came back in the room, we were practicing our “hee hee”‘s.

So that was our running joke until it was time to get serious about getting the temps off and the permanent crowns on. They didn’t numb me enough. I got a few more pokes. So he set off on the right side to take down the tooth with the catastrophic crack. I had warned him that I was not optimistic because I hadn’t been able to chew on that side of my face at all; the cracked portion would shift and cause me crazy pain. He was still hopeful.

While he was working on me, sometimes he would bark orders at me – “Left! Right!” More often than not, he would use the small mirror that he had hooked in the right side of my mouth to move my head around. I could feel my wig getting matted at the back of my head – not exactly ideal, since this piece costs $370, far from cheap, and once the fibers are ruined, there’s no going back. As the minutes dragged on and the dentist maneuvered my lips and tongue so that he could get at my tooth from all the best angles, even in my numbed state I could feel the corner of my mouth splitting. Out of impatience and frustration the dentist hooked two fingers under my top right lip and stretched it as far as it would go, and kept grinding my tooth down to a nub. Tears slipped out of the corner of my eye again. My fingers tensed; I focused on relaxing them, but after a few minutes, I would realize that they were back to being claws and my forearms were becoming sore.

Finally they were done with that tooth. I can’t remember how many songs passed, but we just happened to end at another Michael Jackson song. They took a mold of the right bite so I could get my temporary crown, and finished just in time for me to say with Michael, “You know I’m bad. Sha-mone.” That cracked them up again. They asked if that was really what he said, and I asked them if they had a better explanation.

By the time they were ready to put on the permanent crowns on the left, some of the Novocaine had worn off, so I had to get more shots. More cheerleading from the assistant. I swear that my nine lumbar punctures have been easier than this trip. More stretching of my mouth, pulling my face left and right as if I am a horse being led by a bridle and bit. Barking at me to open my mouth wider when all I want to do is close it to take away the deep ache.

Finally, finally, after 2.5 hours, I escaped the chair and we talked about the next appointment, which is on Friday. I’ll have to be numbed again but it shouldn’t be as traumatic or long.

WWMJD (What Would Michael Jackson Do)? Sadly, my plan to appear more than just a mouth full of broken teeth failed. I’m not giving up my sense of humor. It’s as much for me as it is for them.

Down on the Farm

Posted on by akiwifreund

I have had so much fun being exposed to so many products as part of the Chronic Illness Bloggers network and I’ve been able to give my honest opinion, including this one for the Fay Farm Rejuvenation Lotion. Please note that I received it as a gift and the opinions that I state about this product are my own and are in no way influenced by the company.

First, I’m a good candidate for this product because boy, have I got issues. I’m hanging out in bed for about 20-22 hours every day because when I’m upright, CSF tends to pool around my brain stem, and the pressure is mighty uncomfortable. However, laying in bed for so long comes with its own problems. My fibromyalgia is singing the blues – especially now that in the state of Minnesota and while the sweet corn is growing like crazy, humidity is at its worst (check out this scientific discovery regarding how corn is actually adding to our humidity in this state here).

For about three years I also laid on my left shoulder because all of my shunt surgeries were done medially and on the right side, so my left shoulder has a pretty nasty impingement that hasn’t cleared up with 6 months of physical therapy for the third time. At this point I’m up for trying just about anything to feel better, including sacrificing a chicken and dancing around a fire.

So I’ve got pain all over, and I’ve got this crazy pain in my left shoulder. I’m always looking for ways to take away the pain. The Fay Farm Rejuvenation CBD Lotion is formulated specifically to relieve joint and muscle pain because it contains 200 mg of CBD (cannabidiol) – a product of hemp. I’m not going to get deep into the MJ/hemp debate; however, I’m going to say that I was a legal, card-carrying medical marijuana user while I was a patient in Arizona and my doctors were completely stumped about my horrible allergy to my shunt materials. I went the route of medical marijuana to try to control some of the pain and I learned about CBDs and how they are extracted from hemp plants at certain temperatures much different from THC, and also are not “psychoactive” like THC. In other words, CBDs are pain killers but they are not going to make you high.

Here’s what the lovely bottle of The Fay Farm Rejuvenation Lotion looks like (and you can tell I’ve used it):
2016-08-03 16.52.57
Here’s what it looks like straight out of the bottle, it has a slight green hue:
2016-08-03 16.53.23

Fay Farm recommends that this lotion be used for any body parts where fast absorption is desired. I agree! This is a lotion that is non-greasy and absorbs quickly; the base includes hemp oil, apricot oil, grape seed oil, apricot kernel oil, white sesame oil and jojoba oil, and you would think that with the combination of all of those oils that it would be, well, oily, but it’s not. When I apply a dime-sized squirt to my bad shoulder, it only takes about five circles before it’s absorbed.

It’s not just my shoulder that needs attention. Sometimes the tendons at the outside of my knees become tender. Don’t ask me why – I have a lot of theories but I’m sure I’ll never know the real reason. But I’ve been putting some of the Rejuvenation Lotion there too. And of course if I’ve had to do a lot of walking and standing because of physical therapy, I’ll put the lotion on my feet when I get home. Every once in a while I’ll put the lotion on the tendons that lead to the base of my skull (pretty easy for me to do since I am completely bald – no hair to contend with).

The company has described the scent as a decadent vanilla with a hint of camphor. I’m pretty sensitive to scent, and honestly, I don’t know if I would describe it that way. To me, it smells more “green” than anything and I don’t smell vanilla at all. In any case, it’s not a strong scent and should not overwhelm any of its wearers. Also, this lotion should not replace a good ol’ moisturizing lotion – keep using that chemical-free daily moisturizing lotion (trust me, look up ingredients and products on the Environmental Working Group database: Skin Deep) and get smarter about what you are putting in/on your body.

How effective is it? I would describe this lotion as being gentle and subtle. In other words, the relief I felt was not sudden and shocking; it was more like, “Oh, that part isn’t hurting right now.” It seemed like the effects lasted for about two-three hours. Because I got relief from it, I have continued to use it. It’s that simple. The chickens are safe for now.

Feel free to check out all of their products through the Canna Treehouse website.

If you are interested in this product in particular, you can visit this page directly.

The Boyfriend Invasion

Posted on by akiwifreund

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

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

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

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

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

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

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

I’m Just The Patient

Posted on by akiwifreund

Today was my big appointment with the movement disorder neurologist at the U of Minnesota, and it was decidedly anti-climactic. My first impression was that he was a young version of Derek Jacobi, pictured here:
Derek Jacobi
All of the doctors seemed to be excited that I was scheduled to see this particular one and told me repeatedly how thorough he was. In fact, I was supposed to see him over a month ago, but he looked over my file a few days before I was due in and instead insisted I get my face tased (with an EMG) before seeing me, which pushed my appointment back so that he could rule out myasthenia gravis (a second time). I knew I didn’t have it as of 2010 and I still don’t.

This doctor was short on bedside manner, so I immediately shortened my answers and didn’t elaborate on anything. We went over my family’s extensive history of autoimmune diseases. He made me walk and do things with my eyes closed to deliberately make me fall (which made me sweat and because I was under so much stress, the tremors started up almost immediately). He shook my shoulders, sending white hot pain through my left shoulder that I’ve been going through PT for but am going to get an MRI for after next Friday because I’m not healing – I spent three years laying on that shoulder because all of my surgeries were done on the right side for that length of time, and the pressure really messed up the tendons and ligaments.

After all of that, the doctor told me that his nurse gave me the website in December that I should have checked out on movement disorders. He must have seen my eyes glaze over and the stubborn set in my chin because he left the room and returned with screenshots of the website. I politely folded them into squares and stuffed them into a pocket in my purse. He said that a doctor from July of 2015 believed that I have a facial movement disorder. I told him it was news to me, since the only thing that was said to my face was that I wasn’t a good candidate to have surgery to relieve the pressure on my optic nerves. This doctor said that the other doctor may have chosen not to tell me that I have a movement disorder because there’s “nothing that can be done about it anyway.”

This entire conversation is deeply flawed. First, I don’t have a facial movement disorder. I have a problem with CSF pooling in my cranium while I’m upright and it presses on some of the nerves leading to my face as well as my cerebellum; as soon as I lay flat, the fluid moves away from the area and I get full functionality back. Second, I have plenty of issues in which “nothing can be done” for them – including alopecia universalis, though he was quick to point out that someone was doing a study. I told him that it was low on my list of priorities. Third, I’m the motherfucking patient. Doesn’t it stand to reason that if this is one or more of the thought process of the doctors that it should be discussed with me?

When it was time to go home, the cab driver that got the dispatch to take me home pretended to come and pick me up but then acted like I didn’t show up – even though I was outside sitting on a bench in between approaching every cab that rolled up asking if they were there to pick me up, so it took me an extra hour to get home after I had to call dispatch to bitch.

I really could have just stayed home.

In fact, I would have benefited from a day in bed. I predicted that I would be laid out for a good week after last Saturday, but I think that it was an accurate call. Now that I have an honest to goodness boyfriend, we’ve been trying to do activities that I can actually handle for a few hours. There was a flea market/antiques expo at the state fairgrounds and I thought we could just take the bus because it stops right outside my building and seemed to spit us out right at the fairgrounds gate. I was not a good planner for this trip and we ended up doing a lot more walking than we thought – and it wasn’t like we had a choice, no one could do the walking for us. My phone tracks my walking automatically and I wasn’t surprised when I saw 2.5 miles for the day rather than my usual high of 0.5 miles. By the time I climbed the steps to my building, I was visibly shaking and was fighting fatigue tears.

But damn, this boyfriend rocks. The Saint Paul is loving and affectionate, and goes on food runs and lets me stay behind so I don’t have to get out of bed. I have begun meeting his family and friends, and he is in the process of meeting my people.

Most importantly, we have said the “L” word, and meant it, and will continue to say it. When someone great comes along, you absolutely can’t take for granted that they just automatically know how much they mean to you or how much you appreciate them. I’m infinitely grateful to the universe for nudging me in his direction.

And then there were two.

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

Posted on by akiwifreund

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

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

Sharing Is Caring

Posted on by akiwifreund

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

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

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

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

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

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

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

It’s Not Easy Being Green

Posted on by akiwifreund

I thought I had a diagnosis. In fact, I thought I had THE diagnosis: Lyme, picked up seven years ago on a hike down into the Grand Canyon, yadda, yadda, yadda. Don’t get me wrong, I still have it.

However, after seeing a physical therapist, a pain management specialist and the neurologist who specializes in movement disorders at the U of MN, they are throwing me back in the rare pool. They have never seen anything like my symptoms even with the confirmation of the antibodies particular to the Lyme bacteria. The PT and the pain management doc both marveled at my party trick, which is to lay flat or tilt my head so it’s perpendicular to the floor, which moves the fluid off of the area where it’s pooling when I’m upright and I can move my face again. The neurologist refused to evaluate me and instead scheduled me for an EMG of my face and head. Good thing I am a baldie, because it will be easier for the doctor who performs the EMG to easily find landmarks and previous poke marks. They want to rule out myasthenia gravis (again).
I’m now getting a little overzealous on recording my symptoms again. I know of a couple of people who developed POTS at the same time as their Lyme infections, and so now that’s on my radar too. But the issue with the CSF is really puzzling.

I signed up for a “scholarship” through the Hydrocephalus Association so that I can attend the hydrocephalus conference at little or no cost, which just happens to be going on about 10 miles from me (as opposed to another city/state) in June. I had to provide information as to why I was asking for the scholarship. I refrained from saying “Because I’m a freak of nature” but I did indicate that I would like to know if there are any new shunts out there that I wouldn’t be allergic to, or discuss possible advances in surgery and technology that would allow me to get an operation to fix the issue instead of having to implant a shunt at all. I’m hoping that some of the doctors attending will be interested in my demonstration about shifting the CSF away from where it’s pressing.

Oh, and I deactivated my OKCupid profile. I’m getting to know the man who considers himself a feminist – you know, right up my alley. So far no red flags, and he actually follows through on being a decent human being. Small children like him. He volunteers at an animal shelter. First and foremost, he’s nice to me.

When Life Hands You Lemons

Posted on by akiwifreund

Another article has been posted on Patient Worthy! The picture is of lemons from my tree in Phoenix, something I dearly miss. My body is rebelling and my dates are in retrograde. Where’s my unicorn??

Hello Tremors, My Old Friend