love

Happy Anniversary

Posted on by akiwifreund

Exactly one year ago today I got on a plane and moved from Phoenix to St. Paul. According to the dust on my shelves, that’s the last time I dusted as well.

The first six months were difficult. I was going from doctor to doctor, trying to find any that wouldn’t turn me away. I couldn’t drive because I lose about 80% of my vision while I’m upright for a long time, so I spent about $500 a month just on cab fare alone; when I wasn’t going to doctor appointments, I simply stayed in my apartment.

It took me a lot to where I am right now: I have at least a primary care doctor, I have had 3 months of physical therapy for the pinched nerves in my shoulder and hips, I have a disability attorney (but probably no hearing until July or later 2017), and I now use the short bus and a cab company that is contracted through medical assistance to get me to appointments. I also have an incredibly supportive boyfriend.

There are still some black holes of missing pieces. One: I still don’t have a diagnosis. Two: I don’t know what in the hell I’m going to do about my shunt.

June 16-19 was the National Hydrocephalus Association conference, and I never would have been able to attend if it wasn’t right here in my back yard. I had decided that I was not going to be shy. I had also decided that although it was nice to meet other patients and commiserate, I really, really wanted to pick the brains of the researchers and doctors and manufacturers of the shunts.

At the very first speaking presentation, a researcher spoke about the work she has been performing regarding shunt occlusions (blockages). I raised my hand and first asked if the study began when the shunt was still in the patient (so they could figure out if the drainage tip was stuck somewhere, like a drinking straw that’s clogged by a large piece of fruit or an extra thick shake) or if the shunts were studied after they were removed, because I tend to immediately make 20 years worth of scar tissue in 2-3 weeks and clog my shunts very quickly. She indicated that she tests the shunts only after they are sent to her post-surgery, and that she was definitely interested in my shunt(s). I got her business card and told her about imaging that has been developed in Scotland that piggybacks off of current MRI and CT scans but is supposed to be much more accurate, and it just so happens that she is supposed to travel to Scotland in two weeks. In another talk she gave much later in the conference, she mentioned autoimmune diseases, and I’ll be seeing a doctor that specializes in mast cell disorders next week; I’m going to speak to him specifically about my issues with the shunts and about contacting her and speaking with her regarding shunt rejection. Not a bad start for networking!

But with the good comes the not so good. Another talk I attended was facilitated by a neurologist and a neurosurgeon who were experts in normal pressure hydrocephalus. That is one of my placeholder diagnoses and they kept talking about enlarged ventricles on MRI and CT scans. I asked if it was possible to get that diagnosis without the enlarged ventricles, and they said no. I talked to them afterwards and quickly covered my symptoms and demonstrated my unusual ability to move the fluid around in my brain. They actually became very condescending and a little pissy, asking if I had considered the Mayo. I thanked them and left the room.

At another session, there was a representative from the Social Security office talking about the process of filing for disability. He opened the session by saying that he actually never handled disability cases where health was involved – I mean, when it’s a health conference, why send someone who is knowledgeable? I raised my hand during this one too and asked two questions: 1) Is it correct that since my request for a hearing was filed in early February of 2016, it’s pretty backed up and I shouldn’t expect a hearing to be set until July or August of 2017? and 2) I was told that even though I can’t see well, that my arms and hands still work, so I should be able to get a job. What criteria is used to determine whether I should be employed when my records indicate I should be laying down for 20-22 hours a day? He said, 1) It’s not unreasonable that the hearing would take that long to be set (and I answered that maybe it’s not unreasonable to him, but it’s unreasonable to me), and 2) It’s not just my inability to see or be upright that’s considered, but also my education and my age, so yes, no matter how impaired I am, I may be “too young” to be disabled. That absolutely floored me – no wonder I have to fend off assholes telling me that every day, because that’s the idiocy that the social security office perpetuates every single day.

One session was put on by the Metropolitan Center for Independent Living right here in Minnesota and a particularly energetic and passionate woman dedicated to helping people find the best and most resources available. Of course I raised my hand and said something to the effect of, “Dude from the SSA yesterday said that even though I am impaired when I’m upright, I can still use my hands and arms and I’m only 42, so of course I’m going to be denied. Does this seem correct to you, and would you deem needing to lay down flat 20-22 hours a day a ‘reasonable accommodation’ to request of a workplace?” (In other words, can I lay on a hospital gurney while I’m ringing people out as a cashier at Target?) She rolled her eyes and said that she was told a while ago that when dealing with the SSA, never to apply logic, because what they do defies common sense. She also said that one guy was told by the SSA that he should be able to find a livable wage somewhere “folding napkins” because that was all he was capable of. I asked if there was ever any communication between the SSA and her office for them to base their findings off of, and she said absolutely not.
While we were waiting to be picked up by the short bus at the hotel in downtown Minneapolis where the conference was taking place, there were plenty of people partying and women wearing the most ridiculous heels and short skirts because the Twins were playing the Yankees at a home game. One drunk hanging with his two very drunk buddies began to loudly read my shirt, and so rather than roll my eyes and be pissed, I invited him to read the other side of my shirt. His immediate demeanor took on the tone that he was going to make fun of me, but after I gave him a brief history, all he could say was that he was sorry, and he doffed his hat to me.

Through all of this, The Saint Paul weathered some really dry presentations, and probably learned more than he ever wanted to. However, when I met his dad and stepmom for the first time on Sunday night and they began to ask me questions about my health, he answered them exactly as I would have. The Saint Paul really takes all of this to heart in addition to reminding me that we are a team and that I no longer have to do everything on my own. I mean, man, he got me paper towels because he noticed I was running low on his own – he didn’t even have to ask, and I didn’t have to tell him! Forget “don’t sweat the small stuff” because it’s the small stuff that counts!

One of the sessions I wanted him to attend (while I was in listening to a much heavier topic) was about caring for the caregiver. All of the men in my immediate family have had to put their own health and happiness on hold because my mom and sisters have had chronic and severe diseases. The Saint Paul believes he can handle whatever happens to me, but I warned him that things can change suddenly and completely and permanently for either he or I, and even with the best of intentions, it’s absolutely possible that he can be so deeply affected by this unnamed change that he’s going to lose his shit. It’s a lot to ask of one person.

So, back to this anniversary: this is also the day a year ago that my sister and her husband brought home their second rescue dog from Secondhand Hounds and renamed her June. Just recently, June has started to mimic her dog brother and put herself on the floor and position herself for belly rubs, something she never would have been relaxed enough to do a year ago. It’s amazing what thousands of dog treats and a loving family will do.
2016-04-12 21.37.08

Yes, All Women

Posted on by akiwifreund

The thing that gets me is that we women tend to carry these emotional burdens as our own secret parcels until someone else recognizes them. This young woman experiences the rarer form of bodily violation: the stranger rape. Through her letter to her attacker and thanks to the outrage that most of us feel over the stupidly light sentence he received, we have all been made aware of what happened to her that night and at the trial. It was especially difficult for me to read that one of the Swedish men who came upon the attack was so upset that he broke down in tears while giving his statement to the police. It gives me hope that not every man is being raised to be an asshole like the rapist obviously is.

In the bigger picture, nearly every single woman I know has experienced sexual violence. In my late teens, one young woman was raped by my friend; I cut off all communication with him despite his pleas. She chose not to press charges (because who would believe her?). My own first sexual encounter was violent – the guy didn’t believe that I was a virgin because “virgins don’t move like that” and he left me cut and bruised everywhere including my mouth. Over the years, various men have told me what I liked rather than listened to me if I told them they were being too rough or actually scraping or cutting my lady bits, and they would actually press or bite harder. I found out an ex-friend tried to force himself on one of my best friends within the last year and was outright pissed because she threw him out of her house. After all, he has a penis and therefore a right to her body is his line of thinking. How dare she tell him no?

That’s the stuff that’s even more difficult to prove. If that young woman can’t even make a convincing case for why it’s not okay for this asshole to drag her behind a dumpster and violate and mutilate her while she’s unconscious, what can the rest of us do with the men that are in our social circles who violate us?

https://www.buzzfeed.com/katiejmbaker/heres-the-powerful-letter-the-stanford-victim-read-to-her-ra?utm_term=.eaY45kj6yz#.qrwMXWGNbn

FOOD FOR THOUGHT:When Good Intentions Aren’t Enough: Loving Each Other Better

Posted on by akiwifreund

FROM: AS I LIVE & BREATHE – Nikki Seefeldt, co-host of Sickadilly Chat

I’ve shared some of Megan Devine’s work before here in my blog in the past & I absolutely love her approach to dealing with pain & grief in life. I follow her on Twitter & w…

Source: FOOD FOR THOUGHT:When Good Intentions Aren’t Enough: Loving Each Other Better

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:

Jann Arden Made Me Do It

Posted on by akiwifreund

Sometimes nostalgia makes us remember things incorrectly, or forgive those who did us wrong. Sometimes when we re-watch movies we thought were once great, they fall flat and we figure out we should have just remembered them fondly instead of watching them one last time. I’m talking about “Bed of Roses,” people. Christian Slater was trying to soften up his image a bit after going through a darker phase (“Heathers” and “Pump Up the Volume,” anyone?), and Mary Stuart Masterson was trying to transition into more grown-up roles. Hell, I was trying to transition into more grown-up roles myself when this movie came out.

“Bed of Roses” was released just as I got my first job under the general umbrella of real estate, specifically for me in title work, throwing me into a 20-year career path. It was also the birth of my dating life as I never experienced it before. Men were actually pursuing me. One of them was an assistant to a very successful real estate agent who used my team for closings. I will call said young man Mr. Sweater (to be explained later). Mr. Sweater was a fast talker, demanding but charming, drove a BMW, tall, and good looking in an Izod-Polo-Gap kind of way. He asked me out, and I accepted. We went to see “Bed of Roses” and then went to eat at Albuquerque’s infamous Rainbow Cafe.

At the cafe, Mr. Sweater ordered me a fruit torte just to “watch my mouth” as I ate it. He talked about how he wanted to fall in love with a woman and send her thousands of roses and buy out a city. I talked about Jann Arden’s song “Insensitive” and that I recognized the song in the movie because I already owned the CD, and Mr. Sweater nearly danced on the table, asking if he could borrow it so he could memorize all of the songs like I had.

Apparently it didn’t take much to get in my pants, because we had sex to close out that first date. I don’t remember much about it, that’s how unremarkable it was. No fireworks. No heady thoughts that I had found my soul mate or that he suddenly cared about me. I certainly didn’t expect to have thousands of sterling roses show up on my doorstep. I did leave some CDs with him, though. My music has always been precious, and for any of you who grew up pre-MP3s, you know how difficult it sometimes was to replace stuff once it was gone (for instance, it took YEARS and YEARS to replace an imported EP of Nine Inch Nails “Get Down Make Love” that a friend gave me from England after it disappeared with an asshole ex who felt entitled to it). I expected to get the CDs back because we talked about future dates – they were definitely on loan, not a gift. The CDs included Jann Arden’s.

This is how different we were in our approaches: Mr. Sweater had a very idealized way of thinking about love and how it should look like a Hallmark commercial; I thought he should treat me like I am a living, breathing human being. Whenever I didn’t act in a way that he wanted me to, he would immediately get pissed and chastise me. Mr. Sweater was all about status and money. It was exhausting for me, because I’m the opposite. I mean, sheesh, yes, I LIKE money, but we seem to not be able to spend much time together – it’s more like a distant and divorced relative. Mr. Sweater would always talk about how much one article of clothing would cost, and I would say, “Gosh, that’s an entire month of rent for me.”

We were doomed. We barely had much in common bringing us together in the first place – in fact, that first date was our last, even though we talked on the phone many times after that. But the final straw was him talking about spending $350 on a sweater and then buying a very high-strung cocker spaniel for $800 (both in 1996 dollars, not adjusted to 2016 dollars). Said dog chewed the hell out of said sweater when Mr. Sweater imprisoned the dog in his apartment and barely took him out for a few minutes at a time – the dog was going fucking crazy. I finally laid it out for him and said, “Hey, how about if you stop talking about how fucking expensive everything is? That’s all you ever talk about, and it’s boring. By the way, take care of your dog or he’s going to keep acting out.”

That didn’t go over so well. Mr. Sweater kept talking about how important the price of the sweater was, and that I just didn’t understand because I didn’t own anything that expensive. From there we quickly progressed to “Fuck you” from both sides.

The problem was that he still had some of my music. That included my precious Jann Arden CD. Why didn’t I just go out and get another one? Well, besides music not always being easy to find (especially a Canadian artist in Albuquerque), I was also on a very tight budget – sometimes I only had $10 a week for groceries. (As a side note, my menu for weeks was 1 bag frozen veggies, 1 can cream of whatever soup, 1 bag cooked white rice, 1 can tuna, and I mixed that up for an entire week and a bowl was either my lunch or dinner – nothing else). For a week and a half, I asked him to bring my music back. Finally one night to shut me up he threw everything in a box and put it at my door located at the back, knocked and then ran. My roommate opened the door while I opened my window and yelled out the front, “YOU AND YOUR SWEATER CAN GO FUCK YOURSELVES!”

Yeah, not my best moment. My roommate had no idea the drama that was unfolding under our roof, and she certainly didn’t expect me to yell expletives out the window like we were living in Hell’s Kitchen on a 5th floor walk-up. One date. One lousy lay. Days and days angst over a guy who didn’t have a clue about how to truly invest himself into a loving relationship. I mean, how could he be so…insensitive?

“Bed of Roses” is available now so you can watch it on Netflix like I did this morning. It feels kind of lackluster, and I’m not really sure if it’s because we’ve seen better scripts come out since then, or if it’s because I know what it’s like to be in love and it’s not just about reciting a bunch of lines and hitting your marks and buying out an entire city’s supply of purple sterling roses. In fact, I’m pretty sure it’s not about the grand gestures. It’s about my boyfriend seeing my face and knowing that I either need to sit down, lay down, or be done for the rest of the day – even if it’s 2 pm. It’s about being able to let down your guard and have your inside jokes and sacred space, and celebrate laugh lines and hold each other through vulnerabilities.

The Jann Arden song that was in “Bed of Roses” was actually quite fitting for Mr. Sweater – Jann, seriously, did you know that guy?? I wonder if he ever figured it out or if he is like countless other men who are still stuck on empty.

Say It Isn’t So

Posted on by akiwifreund

Prince was actively seeking the help of opioid addiction specialists in the days leading up to his death, according to the Minneapolis Star Tribune. The morning his body was found, on April 21, he was scheduled to meet with Andrew Kornfeld, a staff member from Recovery Without Walls, a rehabilitation facility in California, according to…

via Will Prince finally get us talking about the prescription pill epidemic in America? — Quartz

The Remains Of The Day

Posted on by akiwifreund

Yesterday I was picked up by the short bus for back-to-back appointments at the health crisis center. I was the only one on the bus and so I felt comfortable chatting with the driver, unhindered by eavesdroppers or joiners. First I asked if he was a Prince fan. Hey, why not? He didn’t look to be much younger than me, and it’s still big news around here since it’s Prince’s home base. Rumors are still flying and spreading like wildfire. How did he actually die? How will his estate be handled? Will his family completely melt down and will it get ugly like it so often does when there is money involved?

The guy admitted he wasn’t much of a Prince fan. Our conversation wandered around the world of entertainment, and he talked about how dissatisfied he was with staying hooked up with satellite TV, but he kept it for sports. But then he said that he really didn’t enjoy watching any sports either. I asked him if he liked to see games in person as opposed to seeing them on TV and he said he kind of did, but he couldn’t afford to go to games. I asked him if he liked to go to shows like theater or dance, and he said he’d rather be burned alive. He also didn’t really “get into” movies or music.

A 20-minute bus ride isn’t really the place to offer life coaching. I also can’t make people feel what I feel, which can’t necessarily be put into words. A sense of urgency, maybe, or finality? It could be that my bullshit meter goes off a lot more than it ever has before. What I wanted to tell him is that he needs to find his joy. I cannot say this loudly enough, though, but this cannot be confused with finding his next fix. So many men are stuck in this cycle of seeking thrills and the adrenaline wears off and they are onto the next conquest while constantly feeling empty and wondering why they do. Where is their humanity?

Before connecting with The Saint Paul, I talked to a few men through OKCupid by text and/or phone who made excuses to play stupid games with me or not respect boundaries. I changed their identifiers in my phone to start with “Asshole ______” and programmed my phone to automatically send their calls and messages into my spam folders. I don’t even think about these folders unless I get weird calls like I have been for the past three days from recruiters based on resumes I put out in the universe over a year ago when I got laid off of my job in Phoenix before I had my last surgery. I went to update the blocks and thought to myself, “I should check my spam folder.” Lo and behold, there were some messages.

The first was from the Christian asshole who had no respect for my boundaries, and who previously tried to bait me into talking to him again by randomly telling me he had arrived at his hotel room. This time he just said, “Hey stranger how are you?” Of course, it’s been almost three months since we’ve texted, and we never even talked on the phone – but by God, he’s not gonna give up!!!! Answer, bitch!!!

The other two were from the last guy I talked to on the phone and texted with before I met The Saint Paul who abruptly said he met someone and cut off all communication after he tried to sext, which I guessed to be a lie since he was constantly logging into OKCupid still when I had an account before mine was deactivated. After two months of silence, he sent texts saying, “How have you been? Just wanted to say hi.” Gawd, please – I am not new. He didn’t “just” want to say hi. We were not casually keeping in contact and staying friends. He’s trying to keep his options open in case whomever he is currently trying to bang doesn’t work out.

I resisted the urge to reply to both of these messages because really, neither one of them deserve a response. I really, really like this phone I purchased on New Year’s just for this blocking feature alone.

There are a couple of great lines in this song by Sean Rowe that I think applies to these guys (and really, listen to the whole song because it fucking rocks): “I’m a man, I am the world, I’m a man, I am the Lord” and “He puts out the lights and jerks off alone.”

I can’t save everyone. They need to figure this shit out.

Le Petit Mort

Posted on by akiwifreund

I cried a lot yesterday. I never used to – it was a bragging point for me, that I would shed tears once a year, tops. But yesterday I started by spending an hour on my counselor’s couch recounting my dehumanizing neurologist’s appointment on Tuesday with big, fat tears rolling down my cheeks the entire time. It actually took me days to process what happened in the visit, and is the reason why I still have to write part two now.

I barely got five words out before the tears started. They were angry tears. I’m pissed. It’s not just that the doctor was a dick – because he was – but it’s that his actions could affect my life for the next few years to come. It’s not an exaggeration. I’ve been through this before too. When I had my very first shunt placed and experienced abdominal pains from day one, the neurosurgeon and general surgeon passed me back and forth for a couple of months and blamed each other for causing me pain before finally throwing up their hands and telling me that it was my imagination and there was nothing wrong with me before they had to do a large cut on me two and a half years later and discovered my abdomen was grossly inflamed from an allergic reaction to the shunt. Two and a half years before they admitted there was a problem.

The problem with this neurologist now is that he is saying that I have spasms in my face, and that I just need to stretch my muscles. He’s going to put that on my records too – and the records are going to the NIH and Vanderbilt. Vanderbilt will either take his word as gospel or dismiss his diagnosis and study me, and I have no idea which way they will tilt, but if they decide not to accept my case, it could mean YEARS of more testing before they will consider my case again.

The most insulting part of the visit with this douchebag is that he spent more time demanding to know why I wasn’t on antipsychotic meds. I am having some issues with word recall, which apparently he views as a clear sign of being psychotic. Well, that and I have this condition that no one can seem to name up to this point. He performed physical tests including forcing me to fall, all the while holding onto my hips to assist me to the next starting point because my legs shudder and I list to the right during any physical activity and I wasn’t allowed to use my cane. Then he had the balls to tell me that I was just having facial spasms. I couldn’t believe it. I said, “But you were holding me up because I couldn’t stand!” He acted as if I didn’t say anything.

This neurologist gave me the standard statement on my discharge papers saying basically “don’t come back.” I don’t make this up, people – it was there in writing. The list of doctors who will let me through their doors is tiny at this point. I would have to go through the effort of finding all new doctors to try this all over again if I wanted to get another referral to the rare diseases unit if Vanderbilt denies me this time.

I’m not crazy. I just need doctors to set aside their preconceived notions and overinflated egos and listen to me, because I have had six years of this, compared to their one hour with me and my pages of documentation that they won’t read anyway.

I sat down on Thursday night and wrote this to the doctor and his nurse. I don’t think it will change what goes in my chart but I wanted to say it anyway:

“Regarding Dx of Facial Spasm:
Just to be clear, my primary dx should NOT be functional facial spasm. I am preparing documentation to submit to the NIH through Vanderbilt and I would like it to be accurate. My symptoms have always followed the same pattern, in this order: vertigo, fatigue, slurred speech, uncoordinated walking and then ptosis. Every shunt revision has been performed after all of the symptoms have presented indicating that the shunt has clogged or broken. My shunt has been clogged since it was placed on May 11, 2015. The symptoms resolve when I lie flat, which is why I don’t have permanent damage on an EMG (and why the test was unnecessary). When I lie flat, I can feel the fluid move away from the area that it’s pressing on, as if an orange peel is slowly being removed, and the pressure is relieved from my brain. That is why my eyes open and all of the other symptoms resolve. When I am upright, the fluid pools and the symptoms return. I demonstrated this in person on Tuesday, including laying flat as well as turning my head to the far left to open the shunt to drain off fluid so I could open my eyes fully.

The printout regarding functional facial spasm does not address CSF pooling in the brain or how doing stretching of facial muscles is going to help pooling of CSF in the brain. Since I have to travel hundreds of miles in the near future to continue research on my medical mystery, it would be helpful if my records were as accurate as possible and did not contain information that does not apply to me.

Thank you.”

Next week I’ll see my primary doc and will find out if I stirred up any shit or if I have been completely ignored.

What a difference having someone who loves me and who is in my corner makes in my life, though! The Saint Paul is like my hallelujah clouds during a shit storm. I promised not to spill all of our personal details, but there are things that I feel are safe to share. The Saint Paul has a big brain and is humble, which makes me weak in the knees. He’s also a good listener. I mean this in a very specific context: If I say that I need to be touched in a certain way, he doesn’t try to correct me and say that “every woman likes” what he’s doing and he’s not going to change it. Instead, he listens and makes the adjustment, and the reward is that I don’t have to fake anything and do the crab crawl backward.

I don’t know if he noticed last night but my eyes were leaking. It was for a much different reason than 12 hours prior when I was parked on my counselor’s couch, but it felt infinitely better.

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.

Grief and Acceptance

Posted on by akiwifreund

Every other week I am in my counselor’s office, and there seems to be something new that brings me to tears, which drives me crazy. I can’t figure out why I am crying so much. I mean yeah, I have experienced loss on a major scale in the last nine months – my sister, my friend, my uncle, moving states, losing my job, losing all of my doctors, losing my option for more surgeries – but I keep thinking that I should be adjusted by now. But reading this post by my fellow blogger reminds me that I keep experiencing loss and that I still have a sense of instability. Since my U of MN doctors insist that I don’t have Lyme, I have to go through the long process of getting set up through the NIH rare diseases unit and make arrangements through Vanderbilt University to be studied there, as they have locations designated throughout the country for patients to be screened. In the meantime, I have to continue with my treatments with my naturopath, even though I have NO IDEA if it’s the right thing to do.

In addition, I’ve been given the option of getting a TAP block in my abdomen with the hope that it will relieve some of the nerve pain that I’m having from being allergic to the drainage catheter from the shunt. The doc is going to numb nerves on both sides of my abdomen leading to my lower belly. The kicker? I have no idea if it’s going to affect my sexual functionality. And I’ve got a brand new boyfriend. And I really like said new boyfriend and I want to jump him every time I see him. And I don’t think it will be fair to lose what little functionality I do have, because who knows how much longer these good years of responsiveness are going to last? It’s asking a lot of a new boyfriend to possibly give up intimacy for an unknown period of time (forever???); I mean, I call him The Saint Paul, but Jesus H…I don’t know, is there something that is a step above sainthood? If I lose my ability to orgasm, that’s gonna take a LOT of mourning. Maybe some booze and mood stabilizers. I’m already stressed out about possibly taking out the shunt permanently because it’s clogged and I’m allergic to all of the shunts, which means that I may be stuck laying down forever and can’t be up for even an hour.

In closing: Send kittens and puppies and rainbows.

+ + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + + +

Wendy's avatarPicnic with Ants

When people think of grief they often think of death, they don’t think about grieving over other significant losses.  Those of us who have had major losses due to chronic illness know all too well that we grieve those losses.

The five stages of normal grief that were first proposed by Elisabeth Kübler-Ross in her 1969 book “On Death and Dying” are: Denial, Bargaining, Depression, Anger, and Acceptance.  Kübler-Ross describes these stages as being progressive, you needed to resolve one stage before moving on to the next.  This is no longer thought to be true.  It is accepted that most people who have loss go through states of grief but it is not linear nor is it finite.

The The British Journal of Psychiatry Nov 2008, published a study on grief and acceptance.  The authors note that “disbelief, yearning, anger and sadness may represent aspects of a single underlying psychological construct – grief.”…

View original post 563 more words