CSF

This is a Test

Posted on by akiwifreund

Another chronic illness blogger has been kind enough to let a bunch of us tell our stories on her site, and late last week my most up-to-date info was included. She has indicated that she may discontinue the series if she no longer has parties interested in being part of the project, but there are so many of us out there that I would be surprised if the well ever dried up.

From This Point. Forward.

Today was a really big day in my little alien world. I finally got the upright MRI that I’ve been asking for for 6.5 years. In all of the 56 doctors that I’ve seen, it has only been the most recent neurologist who hasn’t fought me on my request and put the order in.

So I got strapped into a chair and a cage was lowered over my head and screwed into place like I was Hannibal Lector. Like I was ready for some football and to call out some huts! I was sandwiched and squished between two huge, white panels, a bar propped between the panels for my hands and then one lower for feet to rest on to make my very own roller coaster ride more comfortable.

A couple of times the tech buzzed in and said, “I’m picking up movement. Try to keep very still.” I had explained to her that I sometimes have trouble with tremors in my neck when we were going over the questionnaire, but maybe she’s heard that line before and doesn’t think it’s important to remember. I breathe with my diaphragm, so at a break between segments, I moved my arms as far away from my torso as far as the sandwich bread slices would allow me – that way there was less of a chance that my smushed arms would move my head when I breathed.

The tech had given me the option of tilting the chair back at 30-45 degrees, but I explained that it would compromise what we are trying to catch on imaging, so I had to stay completely upright. The MRI takes about 40-45 minutes, and to make sure the pressure in my skull was really high, I exercised my arms for about five minutes both before the cab picked me up, and then again when I changed my clothes. All I have to do is mimic the bicycle motion with my arms like what I do in PT and I nearly go completely blind from the pressure in my skull. This is why I can’t exercise. I would probably give myself seizures.

At the end of it when I was extricated from the face trap/sandwich boards, I got up to walk and ended up stumbling around like a cat coming off of anesthesia. I had to have a lot of assistance to walk back to the room where my cane was waiting for me. I might have said, “No, I don’t need a fucking walker.” This scan had better not let me down.

Product Review: Visbiome

Posted on by akiwifreund

When people who don’t know me well ask what I do, I tell them I’m a professional patient. When I detect a slightly pitying look cross their faces, I tell them it’s not so bad, because I get to review products like this – and truly, I count myself lucky to have access to them since I have limited means at this time. Please note: I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

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

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

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

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

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

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

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

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

Sleeping Single In A Single Bed

Posted on by akiwifreund

On Monday I finally had my bed delivered. It is an honest-to-goodness hospital bed complete with handrails and a hand control to raise and lower the head and foot areas. I actually got it because I’m in bed so much that I am wearing through my traditional mattresses in a matter of months and I’ve gotten a few bedsores. I was afraid that it was going to be super noisy – both the motor and the mattress itself – but the motor is completely silent and the mattress doesn’t crinkle at all (and maybe it helps that I folded up my foam topper from my queen mattress to add to the cushion of this one).

So of course my friends already suggested that things could get kinky with the handrails and the adjustable bed. Like I didn’t already think that. This shit was made for tying.

I had a few _______ exchanges on OKCupid (you can fill in your own adjectives). The first was from the guy from this post where we didn’t get very far before it got weird.

Him: Long time no hear.
Me: When we were trading messages, you said, “I just need to what hours are better for you.” (I presume you meant to say “I just need to know what hours are better for you.”) I told you that I don’t have a set schedule and that I wouldn’t be logging on the next day. You replied and said, “I’ll have some free time tomorrow, Chelsea.” I repeated myself and said that I wouldn’t be signing in and indicated why so that you would understand I was not simply ignoring you. Then you admonished me for telling you that I wouldn’t be logging in, saying, “You don’t have to alert me when you’re signing on.”

From this short exchange, my takeaway is that you are looking for someone to correct so that you feel intellectually superior. It doesn’t sound appealing to me, but maybe it’s your kink. Be happy, or be right, but you can’t be both.

Him: It was really so people know that I’m not a small-minded misogynist who is afraid of an intelligent woman. Sorry if you felt admonished. I should have been paying closer attention while messaging you.

Me: I wish you luck in finding someone who can capture your attention.

(At this point I blocked him.)

Then I got a message from a screen name that didn’t ring a bell. I saw the email first, and the message said, “Will you ever forgive me?” I logged on to see if I could figure it out. There were two messages. “Will you ever forgive me?” and “I hope I hear back from you…”

I looked at the profile picture. I recognized it as a picture a guy used for a profile and I met him a year ago, but the picture was nothing at all what he looked like. I actually did a reverse image lookup of him before we met but I couldn’t find the picture anywhere else so I still don’t know where he got it from, but it absolutely, positively is not him. He also has a home in France and before we were able to meet up for our date I asked him to take a few pictures from his rooftop, which he did. I did a reverse lookup and didn’t get any “hits,” so again, I had to take him for his word. But after our first date and his very enthusiastic insistence that he wanted to see me again the next day, he completely disappeared. You know, for the next YEAR. And then he comes back with this. No explanation, no apology. So this is how I replied:

Oh, do you mean about using a picture that is not a true representation of you, and then disappearing completely? Nope. You are free, petit cochon. (Note: “petit cochon” is French for “little pig.”)

I didn’t realize it but there has been a message in my inbox for four days now, but OKCupid didn’t send me a notification. It says:

I’m JOHN LOPES im here to date a woman that will make me happy till the end of life you can kindly reach me on my facebook i’d JOHN FILLIP LOPEZ……..or you can add me on my email adress johnfilliplopez23@gmail.com ……….you can also text me on my number …. 3155064755

And then immediately below it is a warning from OKCupid:
Never transfer funds to someone you met on the Internet and keep your conversations safely on OkCupid.

So kids, when you see this message, just know whomever is running this profile is from a foreign country and is running a scam. They like to post photos as military personnel (like this one did) and then quickly shift to a story about how their “work laptop” stopped working and they are in tears because they can’t work and they need money and can’t you send money? They are crying their eyes out, honey baby sweetie. Oh, and I like how this dude can’t decide how to spell his last name – Lopes or Lopez.

There’s a lot of weirdness rolling around right now. I don’t feel like I’m missing out on anything at the moment, so I’m perfectly fine flying solo with my new little ugly bed.

 

97% Compatibility But The 3% Was Extra Bad

Posted on by akiwifreund

I was contacted by this guy on OKCupid, and his profile seemed very promising. A few things stuck out: first, he grew up in the bible belt and he is staunchly NON-religious like me; second, he’s able to construct sentences correctly; third, he’s handsome and tall so he can do things like see the top of the fridge without having to dig out a step stool. I was busy for most of the day yesterday so I didn’t log into OKC until it was after midnight. Here is our conversation from last night:

Him: I am very interested in having you proofread my profile. Seriously though, I spend a great deal of time lamenting how very few people have any idea what an apostrophe is for these days. I don’t know whether it was always the case, and Facebook just revealed it, or if this is a new issue.
Me: I think Facebook revealed the issue. I have a friend who was formerly a high school teacher and who is now home schooling her 7-year-old twins. Recently she posted something that said “Morning’s!”. I nearly lost my mind.
Him: I guess so. Most people don’t spend their high school years reading peers’ papers, so don’t notice until later in life.
Me: That sounds correct. I probably would have fallen out of my chair if I would have had to read some of my classmates’ material, or tried to. Do you write, or are you strictly a reader?
Him: I write on and off. I don’t do it regularly enough, but I always take it up again. I’m probably going to make the jump from fiction to nonfiction soon.
Me: I hate to do this so quickly after just starting to chat, but I have to get up fairly early tomorrow, so I need to call it a night. Would you care to try to chat soon?
Him: Of course. I didn’t realize that it was after midnight. Let’s try this earlier next time.
Me: Sounds great! Sleep well.
Him: Dobranac.

This appears to be a pretty sane exchange, correct? It’s reasonable that I didn’t realize how late it was, and that I said, “Hey, let’s try this again; for now I need to go to bed.”

This morning I received a message from him saying:

Him: Good morning. I hope you are having a good day. Yes I would like to chat. I just need to what hours are better for you. Last night, I was merely responding to your messages at the time that they came in.

Tonight I responded and said:

Me: I looked at the clock last night and was surprised by the late hour is all – I thought I would have been tired before then. Sometimes I have to get up early, I don’t always have a set schedule. I hope you have had a good day. Mine ended up being busy up to this minute, surprisingly. Tomorrow I won’t be on at all.
Him: I’ll have some free time tomorrow, Chelsea.
Me: Ah. Well, I have PT, then I have to take care of my young nephews all day until about 11 at night (we’re going to a concert since they’re off from school), so I won’t be signing in.
Him: You don’t have to alert me when you’re signing on.

So that didn’t take long at all for him to fly his freak flag. First he asks me for an idea of when I’ll be on so we can chat, then he tells me he doesn’t want to be “alerted.”

I typed a bunch of smart ass replies to him but in the end didn’t send any of them, because a nagging voice in my head was singing, “If you can’t say anything nice, don’t say anything at all,” so that guy gets radio silence. But if I would have responded, here’s some examples of what I had typed and ready to go:
– I was merely responding to your request to know when I would be logging into OKCupid to chat
– You mentioned you would be on tomorrow and I responded that I wouldn’t be as a normal flow of conversation
– Do people ever get tired of you starting fights with them even when you are in agreement with them?

 

This Will Help You To Be Curvy In All The Right Places (“Posture Pump” Sponsored Post)

Posted on by akiwifreund

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.

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Three decades ago, my classmates would endlessly remark upon my excellent posture. I was attending a high school for the arts (think “Fame!”) and my art area was theater, but of course like most students there, I dabbled in multiple areas, so I picked up some things from dancing. Even when we sat on the floor of our black box theater in a circle I wouldn’t slouch. I wanted to have a strong back.

Boy, I miss those days. I’m 42 years old now, and I’ve spent the last six years in bed because of a mystery problem with my cerebrospinal fluid that is made worse when I sit upright. Laying in bed has weakened my core muscles and changed the natural curvature of both my cervical (neck) and lumbar (lower back) spine so my spine doesn’t have the “S” shape it should. For the most part I lay flat but I elevate my head slightly so that I can see my keyboard of my laptop, which is propped up on my stomach by a tilted laptop cooler.

For the last twenty years I’ve worked in some capacity in the technical field thanks to a boyfriend getting me interested in computers fairly early in my adulthood. Strangely enough, the posture of the techie and the posture that I find myself in when I am on bed rest are very similar: It’s an annoying “tech neck.” People in the technical field, and in fact, people who are stuck in front of a computer for 8+ hours a day end up in the same pose: shoulders slouched, head thrust forward, neck vertebrae compacted and misaligned.

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Now that I’m pointing it out, you might even be shifting around in your seat to correct your posture, or noticing it more in the people around you, like pedestrians crossing the street who won’t even look up from their smart phones. Yep – there’s the “tech neck.”

How about a visual?

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Even the slightest tilt of the head forward puts tremendous strain on the neck muscles and bones. Rather than adjusting the screen to a higher elevation, we tend to alter the position of our heads so that we are constantly in a hunched-over position – and we wonder why we have so many headaches!

But now that there’s been years of damage done, sitting up straight isn’t going to cure the numbness and tingling in your arms and fingers, or the stiffness in your neck. Of course, do sit up straight, and do take up your company’s offer to bring in someone who is trained in proper ergonomics for adjustments to your desk, but in the meantime (and for the long run), this product can offer you immediate relief. Sometimes it takes a village, right?

There is a family of products available through the Posture Pump® company for back and neck problems that addresses multiple issues, and the Posture Pump® Dual Disc Hydrator® (Model 1400-D) is going to save my neck.

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I already have spondylosis, which is a very technical and general way of saying that I have degeneration of the spine, and stenosis, which is a narrowing of the canal where the spinal cord passes through the vertebrae. I’ve got pain and stiffness, and my arms are tingling and spontaneously going numb because of the degeneration and narrowing happening in my neck.

Here’s a video on the Posture Pump® Dual Disc Hydrator® (Model 1400-D) and you can easily see how it works and how it can help you.  Click on the link below.

Click here:  https://www.youtube.com/watch?v=l6mjIKA_nDo&feature=youtu.be

To summarize, there are two air chambers that work on the neck and upper back area to realign the vertebrae to the natural “S” curve and relieve the pressure from the “tech neck” we have unwittingly positioned ourselves into. Ultimately the neck then benefits by being able to get nutrients and hydration to the discs in the spine, and range of motion improves. And headaches? What headaches? Wouldn’t it be nice to send those packing? You just need to lie on a flat, firm surface, strap yourself into the Posture Pump® Dual Disc Hydrator® (Model 1400-D) , and use the dual hand controls to get relief in just a few minutes’ time.

Here is a direct link to the product page: Posture Pump Dual Disc Hydrator Model 1400-D
For this item only, the company is offering a discount of 15%; just enter Z15 as the coupon code when checking out.

Check them out on Twitter for the latest news: https://twitter.com/POSTUREPUMP
They also have a Facebook page:  www.facebook.com/posturepump/

This product is made in the U.S. with quality materials that are meant to last – one lady has had her Posture Pump® for a decade! The company has other items that may serve you well too – check them out! Posture Pump

The Good Doctor

Posted on by akiwifreund

The colder weather is creeping in, and the vines that have clung to the outside of my building and my window in particular have changed to a bright red, signaling shorter daylight hours. The school of thought used to be that the cold stopped the leaves from keeping their green; instead, now we know that it’s the actual length of daylight hours that makes the leaves change from green to gold and red and burgundy.
2016-10-18-14-14-03Now that we are staying inside more, bacteria are just rolling around and proliferating like little Tasmanian devils. The little jerks caught up with me. First I caught the flu, and after five days of that it turned into a double ear infection (the nurse practitioner said both ears were severely affected but neither had perforated, luckily). Three days later I developed bronchitis…because why not?

In the middle of that mess while I was running a fever, I kept my appointment with my GI doctor because he’s very much booked ahead of time and it would take me months to get another appointment. I desperately need my medication for acid reflux because missing it for even a few hours is agony, plus I needed to discuss my new MCAS diagnosis with him so he would understand the importance of keeping me on the medications. He mentioned at my last appointment in February that he wanted to wean me off of the medications because he didn’t want me to develop long-term usage side effects like osteoporosis. Now it looks like I’m just going to have to live with it and be the old lady hunched over the shopping cart.

I had forgotten between February and now how much I like Dr. Chaudhary. I’m even going to use his real name because that’s how much I like him – no need to hide him behind behind a stage name. He is one of the few doctors who has not sent me away and he is not intimidated by the complexity of my body.

Dr. Chaudhary knows my primary care doctor, and so we chatted about her for a moment. Then we talked about my new diagnosis, and I thought ahead of time to bring the paper copy of Dr. Afrin’s notes. I knew Dr. Chaudhary would have access to Dr. Afrin’s notes in the system even though they belong to two different practices, but because Dr. Afrin’s notes are INSANE – and they are – I thought it would be better to bring the paper so he could flip instead of scroll.

Dr. Chaudhary paused and looked at me and said, “Can I be honest with you? I want to be honest with you.” I told him yes, that would be fine. He said, “I don’t think that Dr. Afrin can help you with the problem with the CSF, sweetie.” I immediately started to get teary-eyed, but told him that that was what I was thinking too, it’s just a very emotional conclusion for me, and he said he understood. (Even as I’m writing this, I am crying.) Dr. Chaudhary said that Dr. Afrin will probably get a lot of the other stuff under control if we can get the right combination of medicine going. I obviously know the drill.

Dr. Chaudhary then asked me who my neurosurgeon was. I had to explain to him how I had tried to go through every healthcare system in Minneapolis/St. Paul, as well as the Mayo, as well as petition to be sent to Johns Hopkins and to the Cleveland Clinic, but was turned down every time (the doctor handed me a tissue). I also told him about the three doctors at the U of M who misdiagnosed me and how it affected my request with the NIH Undiagnosed Diseases Network turning me down, and how my primary care doctor didn’t advocate for me. He seemed especially troubled by the last bit because she was his former student and co-worker but he didn’t ask any further questions on that matter. I asked Dr. Chaudhary if he had any connections, but he said that the one person he would send me to went back to India about five years ago, so that was no longer an option.

This whole exchange about my ongoing neurological mystery took about 7 minutes. What makes him a good doctor – hell, a GREAT doctor – is that neurology is NOT his area. Dr. Chaudhary still talked to me as if I knew what I was talking about, and he certainly didn’t offer up lame diagnoses like myasthenia gravis which has nothing to do with me (ahem, University of Minnesota Neurosurgery and Neurologists!). A friend asked what made him a good doctor. To me, a good doctor isn’t one that is just empathetic or sympathetic, because quite frankly, I get that all day long. Dr. Chaudhary is invested. All I can say to that is you know it when you see it.

I got my scripts refilled. As he was leaving, Dr. Chaudhary said, “I will always remember you. You are my patient who is the opposite of the doll – you stand up and your eyes close, and you lay down and your eyes open! Take care, my dear. Do not give up. I know it is hard, but do not give up.”

I wish all of my doctors could be like him.

Maybe I’ll Go To Stanford After All

Posted on by akiwifreund

Not one but two ladies in my circle (Cara from the podcast In Sickness + In Health  and Kirsten of Chronic Sex) were able to attend the MedX conference at Stanford in September of this year (2016). Kirsten actually presented to attendees and both Cara and Kirsten have chronic conditions that affected their ability to travel and attend comfortably, but they powered through – because they have unique voices as patients to contribute to the perspective of healthcare. MedX operates under the motto of “Everyone Included” and that each person should be valued, while care should be human-centered.

This is a fairly new conference – only five years old – and is technology-based in the broadest sense, because Stanford is doing something that seems so, well, basic. They are inviting patients to the conversation.

I listened to this podcast by Danny Levine, who you may remember interviewed me way back in January regarding my dating life and how being a rare patient played into that. In this podcast he interviews a patient who attended the conference as an “ePatient,” which we find out probably stands for “empowered patient.” After listening to Cara, Kirsten, and now Emma’s stories, I’m motivated more than ever to apply to be included in their audience as an ePatient. I actively blog (and occasionally hop on podcasts and camera), and I’m certainly not too shy to share my story. I’m not sure if they would allow me to present but I would be open to it. I mean, if I can wear t-shirts inviting strangers to ask me about my weird allergies and failed shunt surgeries, I’m pretty sure I can handle the podium. (And this is where my theater training comes in handy!!)

I think something that a lot of us are grateful for (but many don’t know about) is that the conference offers scholarships for both attendance and for travel, both partial and full. For instance, I am not receiving any income this year because my disability case was denied because I didn’t have a diagnosis and the language my doctors are entering on my records isn’t really describing my situation. So now that I’m pulling money from my 401k to live off of – the absolute barest minimum so that I don’t lose it all to penalties and taxes but have enough to pay rent and student loans – I don’t have money for events like MedX, not just for attending the conference but also for flying there and sleeping in a bed. There’s a chance they could take pity on me for seeing 54 doctors and having 10 shunt surgeries and looking like Quasimodo and I could be in Stanford next year, telling a room full of people my story. So I’m gonna try. But my job as an ePatient is that I have to use my medium (blogging) to document my time there – at least three blogs of certain lengths. That’s absolutely no problem. I’m pretty chatty.

I’m a bit worried that like TV programs going for the cute puppy factor, MedX will want someone on stage who already has a happy ending, who won’t seem to be soliciting assistance for an unsolved mystery. Even with my recent MCAS diagnosis I have no idea if I’m there yet.

I’m also worried about traveling that distance by myself. I’ll lose a great deal of my vision from having to be upright for so many hours, plus I’ll be incredibly uncomfortable because I won’t be able to lay down to relieve the pressure and it’s pretty much guaranteed that I’ll develop tremors, so it would be great if I could have someone with me to act as my eyes and carry items as well as open doors. The national hydrocephalus conference was here in Minneapolis this year, and that was incredibly taxing on me, so I know traveling to California will be much harder. Cara is still suffering because of the nature of her chronic illnesses and unfortunately her body may take months to recover.

Why do we want to do it? Because, as patients, we are involved. Rarely do we enter or leave a doctor’s office without doing a ton of research. This conference is tech-heavy and is attended by doctors and researchers and administrative staff just as much as it is patients, and that is a direct reflection of the world we live in when we seek medical care.

At one point, Kirsten spoke up and suggested that the medical staff speak directly to the patient(s) while a presentation was being streamed to the masses online. A conference does not relieve doctors of certain responsibilities such as treating patients as individuals with valid input.

So I’d love to go and make some connections just as Cara and Kirsten and Emma have, and raise my hand and raise some hell if need be. I can think of a few dozen doctors who really need to attend and gain some perspective.

Medical Sexism and Trump Grabbing My Girl Parts

Posted on by akiwifreund

I pride myself on being a college-educated woman. The education came at a steep price. The student loans will likely haunt me long past my death; I only finished two years ago, and I was even handing in projects while I was in the ICU recovering from my many surgeries.

My education is not strictly located in books, though. I have traveled through 36 states and 7 countries in 20 years, and moved across the U.S. 4 times. As my friend pointed out on Friday night, I seem to be able to talk to people wherever I go (I didn’t realize anyone noticed!). Sometimes I hang back and observe, and there is a lot to be learned by listening and watching body language.

I have never liked Donald Trump. I was never attracted to his slicked-back hair and definitely would not have recognized him if I stumbled across him in the 1980’s or ’90’s when his star was rising, and I couldn’t stomach his show for even one hour when “The Apprentice” started airing. I didn’t understand the appeal of him being put in front of a camera for being extra nasty. I never bought into the idea that it was being played up for entertainment; I actually thought that he was even worse than what we were seeing.

Now here we are and somehow he has slipped past all of the 14 other candidates for president and it’s the last few weeks before the big election. Here in Minnesota we’re allowed to vote early by absentee ballot, so rather than join the crush on voting day, I made arrangements to go to the county office at a time I knew it would be much quieter. It took me about a half hour to fill in all of the boxes manually for all of the different options. We had state representatives and judges that needed votes as well as the president and vice president. Luckily Minnesota is still using paper ballots – so many states tried to go electronic and the glitches resulted in votes disappearing forever, and Republicans winning votes where they might not have.

In case you haven’t guessed yet, I didn’t vote for Trump. I happen to be a few things he hates: a disabled, fat, bald woman who will never compete in beauty pageants or for his attention. But here’s a more comprehensive list of why having him as president would pretty much guarantee that 99% of us would be dead by February 2017 (or there would be a coup, but that would require people getting off of their asses and abandoning their cats).

I attended a school in a very rural area of Minnesota for five grade levels before I moved back to Minneapolis to finish school. Some of those classmates are now friends with me on Facebook – or at least “friends” as Facebook defines us. But we have led very different lives. As much as I have ventured out on my own since the age of 16, the majority of them have stayed very close to home, married very young (some even fellow classmates), had children, and some have already started working on grandchildren, even though our age range is only 41-43. Collectively and in general, they are afraid of anyone who isn’t white and Catholic; Lutheran is marginally okay, even though those fuckers don’t kneel. You’re fucked if you’re Jewish in that area. There’s been a mighty wave of Muslim Somalians of course, and the white folks are scared shitless. Trump seems like a white-orange god because he makes them feel secure – walls! Muslim registry! Deny entry to any more Muslims! All Mexicans are bad (except for tacos)! Um…money! (Shhhh, don’t say anything about the fucking bankruptcies. He was smart for dodging taxes, you’re just jealous because you’re not as smart as he is.) And the creme de la creme: GRAB WOMEN BY THE PUSSY! He sure tells it like it is!

Well, let me tell it like it is.

First, let me drop in a little truth bomb. I had my genes analyzed through 23 & Me just to get the raw data because of all of this rare disease business and to see if they could pick up anything identifiable, and something that came up on my mitochondrial DNA (mom’s DNA) is that I’m Yemeni Jewish. That’s right, fuckers, I’m Jewish. Yemeni Jews happen to be the oldest lineage of Jews, desert dwellers who often converted to Catholicism in order to avoid being put to death, which is likely what happened with our family somewhere along the line – we’ve got bishops and nuns. Jews who converted to Catholicism became self-haters publicly to save their lives. I’m a survivor.

Second, I feel like we are moving backwards in time. Trump is just a very obvious sign of it. Here we are in 2016 and a swimmer gets 3 months in jail for raping an unconscious woman in a back alley because a judge feels sorry for his potential swimming career; young men are deciding that as a reaction to women trying to get equal rights and pay to men, there needs to be a movement called “menenism” where their “grievances” need to be aired (and though it was started as satire, I’ve been personally targeted numerous times on Twitter by guys with the “menenist” agenda – mostly ending with “shut up bitch what have you done nothing,” so of course I’m mentally correcting the punctuation); and now females aren’t going into medicine in equal numbers to men.

When I was debating the Trump vs. Hillary vote with these former classmates and they were telling me why they thought Trump was still “better”, and here was the list that one of the debaters came up with:
Instead, I suggest folks vote based on simple, concrete (non-emotional) things like
1. Who will keep us safer?
2. Who will keep the government out of my health and education choices?
3. Who is LESS LIKELY to be swayed by bureaucracy?
3.5. Who is least likely to fu*k up our economy further?
4. Who hasn’t been linked to several national security leaks?
5. Who hasn’t been linked to voter fraud?
6. Who hasn’t been linked to multiple nefarious deaths to those opposed to or threatening to them?
7. Who HAS BEEN?

This was my response:
Okay, I’ve gotta jump in on this, because I’m a little worried about just where the “facts” are coming from. First of all, we have a pretty solid idea of how Trump is going to treat certain issues.
1. Trump is going to be just as challenged with geography and world events as Palin is.
2. Trump needs to stay away from my vagina and needs a thesaurus because he only knows the word “tremendous” – so do you really think he needs to be in charge of determining how education is either built up or broken down?
3. Trump is easily swayed by anatomy, money, perceived power, hair spray and dementia (his own). 3.5. Are you guys really okay with the number of times he has declared bankruptcy and denied payment to all of his contractors, big and small?
4. He leaks what’s going on through his brain (i.e.: “I don’t pay taxes because I’m ‘smart'”) – pretty sure he shouldn’t be trusted with nuclear bomb codes.
5. He doesn’t have a voter fraud record because he has never had an office that he has been voted into; he has bought all of his offices. And then filed bankruptcy. Multiple times.
6. Multiple nefarious deaths….well, that comes with the territory of being American, doesn’t it? We’re all bullies. We don’t take time to listen or understand or practice any diplomacy.
7. Silly question that is more like a bumper sticker and carries no meaning.

Then one person asked how I felt about “all” of our health care providers supporting Trump?

I’m going to let the “all” slide because I don’t think that’s the case, but I am personally struggling with getting adequate care, and I truly think it’s because we have a boys’ club that is going strong still. Right now the breakdown is about 70% male and 30% female doctors, and I really do feel like my female primary care doctor isn’t confident she can stand up to the male specialists who misdiagnose me. Because she can’t, it really, really fucks me over. It fucks over my case with the undiagnosed diseases with the NIH, and it fucks over my case with disability.

I’ve been struggling with the right way to put this into words, and it’s a little more complicated. I have a deep mistrust for doctors at this point in my life. I expect them to let me down. Last week when I had my appointment to follow up on the testing for the mast cell disease, I barely slept three hours the night before and fully expected to be sent away, just like hundreds of other times. So right now, if I even have the slightest hint that someone worships Trump and his hatred for women besides as sexual vessels, I instantly get anxiety. I can’t trust that doctor to write objective notes in my file and I can’t trust that doctor in my personal space. This is not unfounded.

But the truth is that most doctors won’t talk politics freely. I just have to trust my instincts and  read the doctor’s body language and figure out if he’s an asshole the old-fashioned way.

The One That Got Away & Other Lies

Posted on by akiwifreund

There is a guy on Twitter that I started following who is a life coach and motivational speaker, but is definitely not a Joel Osteen/Tony Robbins type, though closer to Tony than Joel – he reminds me of the fast-talking Italian types that I think all of us have seen a time or two whenever guys in suits are interviewed about whatever happens on Wall Street. And they’re Italian. And they’re loud. And they say “fuck” a lot. And they have a lot of big, white teeth and they talk fast and they say “fuck” again, just for emphasis.

What Brenden says in 140 characters on a regular basis at least once a day is what I have said at least once myself, or maybe have taken a few more words to have said it, but the sentiment was there. One downside to Brenden is that he is a staunch supporter of Trump, so I have to sometimes decide if I have to walk away from what he’s saying for an entire day because he’s humping Trump. I wish he would leave the elections out of his life coaching, but it’s his choice, so I have to deal with it.

To be clear, I’m not following Brenden because I feel I need life coaching. I think I have a pretty good handle on who I am, and I think Brenden has a pretty good handle on who he is. For a good portion of my life people have come to me for my help and advice. I feel like Brenden should be my backup bitch. I haven’t got the energy for it. Actually, I need to reword that: I don’t have the fucking energy for it. I’m at doctor appointments nearly every day and worrying about where I’m going to live when my money runs out.

Anyway, one of his posts today was this: “You can’t move forward in life until you’ve got a proper context for the past and are completely at peace with it.”

I think proper context is something that a lot of people miss out on, especially if they are finding themselves stuck in the same patterns.

Because I’ve been on OKCupid a few times in that past couple of weeks, I’ve seen old messages that were not previously deleted – even from a few years ago! Some exchanges cracked me up, some made me roll my eyes, some guys made me think of course you’re still on here, you’re just looking for someone to bang, not a relationship like you claim in your profile.

Of course, the messages between the most recent ex and I were in there too. He told me in the course of our exchange that he had taken expensive dance lessons to impress a woman who had no romantic interest in him and never would. I found out this happened sometime between age 38 and 44 for him, and he turned 45 when we dated. He was supposedly madly in love with this woman for five years while she said she only wanted friendship from him (and maybe once in a while emergency assistance like errands or bail-outs).

He told me, “She’s the closest thing to the one that got away, I guess.” This is not proper context. If one is going to use this Nicholas-Sparks-antiquated term, it refers to both parties loving each other and feeling as if they could, indeed, be in a long term or forever relationship, but distance or circumstances (like one of them is taking care of an ailing parent for 20 years and it’s the 1940’s and unmarried people don’t live under the same roof) keeps the couple from getting together. This woman could not imagine dating him. He was really, really trying hard to make her change her mind. For five years.

She does not owe the Ex-Saint because he really, really wanted her to change her mind. She is not, nor will she ever be, the one who got away.

Same goes for me. I am not one that “got away” – but I did call bullshit.

It’s weird and creepy how much of a departure from reality his imagination took him, but here’s a glimpse: He would tell everyone he managed a “call center.” Now, I’ve worked in call centers for 15 years. Hell, the campus I worked at in Arizona had 4500 people. His area has 3 people including him. He’s never worked in a call center in his life because this has been his only job in his entire adulthood besides the pizza place in college (which also wasn’t a call center, incidentally). My apartment has a cell phone and a VoIP phone. Do I live in a call center? No. But if he were describing it and it was his apartment, then yes, it would be a call center.

The Ex-Saint would get many calls that he wouldn’t answer while we were spending time together. I suspected that they were bill collectors, but he never admitted it.

The Ex-Saint had a gambling problem and would drop large bills on pull tabs. I only knew about it because the few times that we were at bars, he couldn’t pass by the pull tabs without spending a minimum of $50-100 in 5 minutes.

The Ex-Saint is a binge drinker. Every weekend, and even a few days a week, he gets stupid drunk. I estimate that he drinks somewhere around 50-70 12 oz. beers a month (but that might even be conservative). He’s also obsessed with putting jalapenos on all of his food, which has been identified as being an indicator that someone is an alcoholic – they seek out the spiciest food because they have fucked up their entire taste system.

The Ex-Saint is a binge eater. He slurps all of his food from his fork in a frenzied fashion as if it’s the first and last time he will ever eat, chews frantically with his mouth open and his eyes glaze over. He also eats 2-3 full plates at a time. This one is particularly hard for me because I have certain triggers myself, having struggled all my life with food addictions and seeking comfort emotionally through food. (Side thought: Where’s the damn gene that makes us addicted to vegetables??? WTF?)

The Ex-Saint is a hoarder. I was never allowed to see his apartment because apparently it was packed with junk and boxes.

The Ex-Saint is a compulsive liar. From the job description to the denial about drinking and gambling and just about anything else you can think of (too much to list here), lying is so much a part of his life because addiction is. I remember one time he tried to accuse me of lying about playing the violin, clarinet and piano; I told him that he had walked past my violin a few hundred times in my closet without realizing it, but it was there on the top shelf right in the open if he looked. No lie there. I’m musically inclined.

Proper context would happen if he actually got professional help to work through his issues. Unfortunately, he’s back on OKCupid (so now I can properly block him) – but that means he’s going to be telling his lies to a whole new audience. I’m sure his family feels sorry for him and has told him to get out there and try again. But if he’s lying to them, or worse, they are enabling him to continue to hoard and binge drink and gamble and wrack up debt, they’re not doing him a lick of good.

If he’s ready for some honesty, I’ve got Brenden’s info. Brenden will help him kick some fucking ass with truth and live an authentic life.

(Just don’t vote Trump or we will all die by February 2017.)

This Is Going To Sting A Little

Posted on by akiwifreund

My day started early – stupid early. I didn’t mean to, but I only got three hours of sleep because like with all other nights before big appointments, my anxiety skyrockets. My alarm was set to go off at 4:55 a.m. but I woke up at 2:35 a.m. I tossed and turned, and then out of habit my fingers found the spot on my left glute and pressed it and I wondered for the thousandth time if I should have it checked by the dermatologist because melanoma and squamous cell carcinoma run in my family and I never date anyone long enough to remember to ask that person to check the mystery spot on my ass that I can’t see myself. Then I checked Facebook and Twitter and Instagram and all of my email accounts. Then I put on a few terribly cheesy movies from Netflix but couldn’t make it past the first 10 minutes before giving up and searching for another one. Finally I turned off my alarm before it sounded and showered and readied myself for the day, and took my handful of morning medications.

The first appointment was at 7 a.m. with the nurse practitioner working with Dr. Afrin at the University of Minnesota; he is the granddaddy of mast cell activation disease and his patient log is backed up so much that he’s booked out one year in advance, so the NP is helping to do the follow-ups. It was our first meeting and it was after my initial follow-up had been postponed in favor of more testing, so I was already preparing myself for the absolute worst. After all, I have gotten the speech so many times: “I’m sorry, your tests are inconclusive, so I can’t continue seeing you.”

One of the first things the NP said to me was, “I have never seen a histamine level that high before.” We talked about a lot. She gave me about 15 pages from Dr. Afrin to read – and they are prose-heavy, so it’s going to take some time to go through everything. I’m going to have to do a lot of trial and titering up with the medications to see if I can figure out a dosage and frequency that works. He indicated that we are about a decade out from understanding more about the intricacies of MCAD. The bottom line is, I have it. He might be able to make my life more comfortable but there is no cure.

I talked to the NP about my feelings about sending part of my drainage catheter to the research scientist in MI (if she wants it) to see if mast cells are causing problems on the shunt – maybe that’s what’s causing problems for a lot of shunt patients? Also, the NP has no idea if resolving my histamine and inflammation issues with MCAD will actually make it easier for me to have a shunt inside of me. Also, she had no idea if that’s the reason I needed one in the first place. And because I’m still having a lot of issues brought on by the PTSD/anxiety/depression, I did cry in the appointment (like I do now in all appointments), but only once. All of the sudden towards the end of the appointment, the fluid moved down the shunt and both of my eyes spontaneously opened. She got up to get a light and checked my pupil reflexes, and remarked that she had never seen anything like it. I told her that I never had any warning but I knew that I was a magical number between air pressure, humidity and temp; after a few minutes, the shunt clogged and my eyelids drooped again and everything went back to being paralyzed.

After that appointment, I had to come home and meet with the supervisor from the organization that employed the woman who sent me the fire and brimstone craziness. We had to talk about a lot of different issues including trying to find housing for me (since I can’t live with anyone who has animals – my friends and relatives are all breathing big sighs of relief!) and the public housing list wait list is something like 1-3 years (I have no idea what I am going to do between now and then, though there is something I can apply for with the state of MN that is a status of disability that has nothing to do with money but does get me qualified for services and housing). We also talked about getting me help if and when I get shoulder surgery since I won’t be able to do things like haul around laundry.

This was the first time that I met with this person, and she was asking me to fill in some information about why I was having such a hard time with finding neurologists and neurosurgeons. Every time I have to talk about it, I immediately start crying – that’s what clued my therapist in to the fact that I’ve got PTSD – and it’s emotionally draining. I’ve stopped apologizing for getting upset. So I walked her through the Three Stooges at the U of M who completely sabotaged my case with the NIH Undiagnosed Diseases Network as well as Social Security Disability.

I was supposed to go to a social gathering tonight, but I called to cancel because I wouldn’t have gotten home before 10:30-11 p.m., and I have to get up stupid early tomorrow, around 4:45 a.m. again to see the orthopedic surgeon. I’m really fucking tired. I’m so tired that I’ve been sitting here in the same spot for about 4 or 5 hours and I just realized that I put my lounging dress on backwards (it’s got a scoop neck in the front and a deep “V” in the back) and I really can’t be bothered to fix it. Normally I would be a little mortified, but at this very moment, I do not care.

I think about how this is breast cancer awareness month. I think about how everyone understands the gravity of cancer. I think about how five days after one of my surgeries, someone told me I looked fine, and I probably didn’t need help.

I think about how I never knew it was possible to have a disease that couldn’t be diagnosed for this length of time, and that doctors could turn patients away.

I think about how it’s been 6 years and 3 months since I’ve gotten sick, and I may never know what the real culprit is – but it’s funny that my body kicked it into high gear just as MCAD was beginning to be identified. At least I have that label.

Oh, and the doctor put in my notes that I had a “stunningly good memory for the entirety of my history including specific dates for each event” but that my appearance is a “chronically ill-appearing woman who looks a bit older than her stated age….”

Ouch. I always am guessed to be 8-10 years younger, at least to my face.