On Straight

It took me awhile to get the energy to write this entry because my health has not been good. 

In the interim, I've changed neuros to a better one, I think, one who I can engage with better and who makes eye contact with me instead of the office wall.

I still don't know for sure what's causing my peripheral neuropathy. The GI end of things has been especially difficult: I haven't had any solid food in a month and I've lost about ten pounds.

My neuro agreed that my BP was "lowish" and prescribed midodrine to take in combination with my usual dose of fludrocortisone. (Plus the usual salt, fluids, compression hose, etc.) He also told me I should see a motility specialist for my stomach.

There are a couple of them floating around the Cleveland Clinic, but I have such terrible experiences there that I'm reluctant to go. We'll see.

For once though, I've been clear-headed enough to conduct myself as well as I can, despite all these crazy health issues.

My sister flew in from Delaware for Labor Day and we lazed around the whole weekend looking at YouTube videos of makeup, then shopping at Ulta for Revlon Lip Butters and nail polishes and other beauty plunder.

We went to go see The Possession* at the movies and LOVED it with a love that we have for all horror movies since our great-aunt had a huge collection of them and showed them to us one by one whenever we came to her house for the holidays.

I did some writing for the first time in a very long time, both non-fiction and poetry. I want to do send some work in this fall for publication, because I don't think I'm well enough for a residency. 

I hope that in the future (as in next summer) I can write a chapbook and get that published. 

It's amazing what a little bit more energy can do for me. Enough to write this, water my plants, strip and re-make my bed, wash my hair.

The week after next is my birthday and I'm feeling circumspect. My wishlist is all feather beds, pillows, pajamas, things to make me more comfortable! And I thought, "well, what about what you want, what you like?" But it was hard to find things I wanted and liked that didn't intersect with need.

I want frivolity in my life, but it seems there's no room. I need new clothes. I've lost so much weight, even my underwear don't fit me properly.

"Are you a size 0?" my sister asked me accusingly.

"No!" I said quickly. "I don't want to be a size 0," then sulkily, "Only at places like Anthropologie". I feel greatly removed from my own body. I was fussing with my hair in the bathroom and caught a glimpse of my bare torso in the mirror. Every breath I took, my ribcage and every visible rib expanded, then fell, expanded, then fell. I watched myself like I was some alien being.

Do I need to acknowledge this sack of antlers as my body? Or can I just sort of take a breather and wait until all this mess is done and at least 15 pounds have returned? I think the lesson I'm slowly learning is that this mess isn't ending. This mess is my life and I have to live it, good, bad and ugly.

*Based on a true story, y'all!

A Matter of Life and Life

I was not raised to show emotional vulnerability, so I don't have many friends. As my symptoms have worsened, my reluctance to tell someone, anyone about how I feel about them has increased.

Not what is happening to me, you understand, but how I feel about it. And I'm scared out of my wits. I have nightmares where I'm screaming for my parents because I can't walk, but I wake up and I feel like I can't tell anyone.

I can't really feel my legs from my knees down, because a lot of the proprioception is gone in them. This is a sensory neuropathy, I think. So unless I can see where I'm going, I don't know where I am in space. The consequence of this is that my legs feel "invisible" when they are covered up, like when I'm in bed at night. It's an intolerable sensation. I have to wiggle my toes constantly to reassure myself that yes, my feet and legs are there. A lot of sensation, such as to pinprick and temperature change is also gone. This is small fiber neuropathy.

It took a long time, I feel like to finally get a full battery of autonomic tests redone, but when I did I saw a familiar expression flicker across my doctor's face. Uncertainty.

That, ah, what is this shit? look. So he tells me that in the beginning, my tests showed that only my feet had stopped sweating. But now only my forearm was sweating. And it was only sweating a little. And if he did the test next year, I probably wouldn't be sweating at all.

I felt my mind began to race furiously, because the appointment seemed to be happening way too quickly. He was already shuffling papers, he was already preparing to leave! "Wait!!" I said. "What's causing this?"
"Probably since you had a virus first, it's an autoimmune mediated reaction."
"So, can't we do anything about it?"
"Well, you're not immune deficient...you don't have any antibodies."
"But people take medicine for autoimmune problems all the time!"
"You don't have an autoimmune problem. You have an autoimmune response."
He turns to leave again. "Wait!" my voice is on the edge of hysteria, but if he notices, he shows no sign. "What about my EMG."
"Your EMG was perfectly normal."
"No it wasn't. I had no reflexes in my ankles."
"Some people with small fiber neuropathy have diminished reflexes."
"But reflexes are large fibers!"
After giving me a I wish these bitches would stay off the Internet sigh, he leaves. And he doesn't come back.

I spend the weekend with my new friend seronegative autoimmune-mediated small fiber autonomic predominated neuropathy.

I told my friend J. at one point that sense I was little I had been able to tell when people were being deceptive but it only made me sad, because I couldn't actually make them be forward with me. I knew that my neuro thought that my insurance wouldn't pay for IVIG because I wasn't immune deficient and lacked ganglionic aChr antibodies. But that didn't mean he couldn't try. And that didn't mean he couldn't trial me on something like prednisone.

I was certain of one thing, that my neuro had a paucity of either ideas or motivation, and that I should seek a second opinion. In the meantime, my invisible lower legs and progressively worsening balance are scaring me. What other nerves will my immune system attack (excuse me, respond to.)

Why am I always made to feel like I'm overreacting, when I'm pretty sure I'm not overreacting? The heat wave that has blanketed the middle of the country means that I have to be in an air conditioned environment. Only the upper 30% of my body is still sweating properly.

For a long time I felt I was getting worse, but was told I wasn't active enough, or that POTS didn't get worse. So when I finally do find out I've gotten worse and will get worse, I get this total non-response. It feels like the first time I got sick all over again, where I had to get totally bedridden and non-functional from POTS before someone finally diagnosed me and even then, only by accident.

Since my feet started getting numb in February, things have been getting worse quickly and granted, I'm just a bitch who likes the Internet, but I think there's an opportunity to actually do something about this.

I want to not care about my health. Because I don't want to just survive, I want to live. I want to go on dates and go out to eat and volunteer. When I had to struggle just to get my doctor to answer my basic questions, I felt like he didn't care about my life at all. Only my survival. He didn't even ask me what symptoms I'd been having. In fact, he never asks me. He's just a wretched doctor. When I told him my blood pressure was too low for me to get a record of my standing blood pressures, he told me to buy a more expensive cuff. Oh, okay.

Wretched doctors makes it hard for me to enjoy my wretched life. I just want to kick back, knowing that these jokers have my back for once, so I can just feel at ease as I get displaced in my body by advancing illness. Is that too much to ask?

Chicago

Several things happened upon my return from Chicago. I was diagnosed with peripheral polyuneuropathy (of the large and small fibers), my mother had a nightmare so distubing she woke me in the middle of the night to see if I was okay, my father asked me what I intended to do when he and my mother passed away.

And, in response, I resolved to shove my health issues to the very, very back of my mind and put something heavy in front of the door.

Chicago was hot. Even the little jet I flew in on seemed to be having trouble staying cool, despite the conditioned air. I had a window seat (always) and I took in the city, staggered on the coast of Lake Michigan.

The lake had a summery color, chambray blue.

J. and I go way back...sorta. We didn't grow up together or anything, we just casually bumped into each other on the Internet, liked each other's writing and when I moved to Chicago, J.'s hometown, for school we met in person for the first time and became fast friends.

In Chicago, I promptly did a bunch of inadvisable things. I ran myself ragged on my very first day, despite having been up since four in the morning. The next day I stripped off all of my compression garments, put on a bikini, went frolicking in the 80 degree heat and lay on the hot, hot sand.

WHO NEEDS OXYGEN TO THE BRAIN?

The next day I couldn't even sit up, so I rested all day (and looted the contents of J.'s fridge) And the next day I was at it again. I ended my trip on a rooftop, with the Sears Tower just visible in the distance.

At home I feel pensive. Surely, I want to move out. Surely I want to live more broadly than I am now. But even these thoughts are at odds with the fact that even five minutes in direct sunlight was enough to sap my energy at an alarming rate.

I tried in vain to convey to J. just how little physical and mental energy I had. It's like puncturing your gas tank in the morning before you drive to work, I said. That's what a hot day does to me. Everything takes my energy. Standing while I'm brushing my teeth, a shower, any meal more complicated than a sandwich or a bowl of cereal....

It takes me an hour to get ready in the morning, then I lie down for an hour before I'm ready to go. When I look at it this way, trying to ignore my health issues in favor of living a little feels irresponsible at best. My doctor said I should only spend 20 minutes a day being upset about my health, which I think is just rich.

Because what am I thinking about while I'm wrapping my abdomen in ace bandanges so tight I can hardly breathe? (That's my version of an abdominal binder, to prevent blood pooling.) Or when I rest my smarting fingers from yanking on my compression tights? Or when I'm trying to schedule my life so carefully so that one event falls on every other day, where an event is an excursion of less than two and a half hours including transportation. Which sounds simple until you find yourself walking away from a poetry reading because if you don't you won't have enough energy to drive yourself home. And it'd be one thing if these things were predictable or stable in any way but no. No one has any explanation.

So how does one live well while losing a tug-of-war for one's quality of life with a disease that isn't even taken seriously by one's physicians?

I suspect that I'm going to be the only one who can answer that question in the in the end.

Oh, Yvette, wah, wah, wah. Have some more pictures. I did go bra shopping with J. and we found out we're the same size! "We're bra buddies!" she said. I said, "I'm gonna steal your shit." But The Little Bra Company did not pan out, sorry to say. Just look at this little slip of fabric! Here, a 28C or some other size I probably was when I was 9.

I might have bought it anyway had not it been for one problem. The band. TLBC claims that their bands run small. They do not. Their bands are the same size as other manufacturers! Thus, a 32C is too large in the band! So the $100 credit I bought is totally wasted (on bras at least) I'd have to gain a lot of weight to be a 32 in the band again, and I'd have to lose a lot more to drop down to the next plausible TLBC size, a 30C, a prospect that should it come to pass, bras would be the least of my worries. So TTYL, TLBC. I suspect I'll be spending my credit on underwear and maybe getting my favorite of the bras I ordered, the Sascha, tailored down to my size by tightening up the band. The cups, for the most part, fit fine. Slightly small.

If I were the TLBC, I would advise that it is the cups, not the band that runs slightly small.

Shit is complicated, isn't it? So in the end, I have one TLBC bra that needs tailoring, the Sascha, one Betsey Johnson bra in a 30D and one ancient French bra I bought from Filene's Basement in a 65DD or some incomprehensible Euro size that I finally fit into.

Thoughts on my Body and The Little Bra Company***

Bras are a big deal to me. I 'filled out' early as a 10-year-old and I hated every moment of it. I hated the training bras, I hated the stares. I was a small girl with larger than average breasts then. Now I'm a small woman with small-ish breasts that are strange to her, but nevertheless, need a bra.

With being sick for so long, I was distantly aware of the fact that I was losing weight, but didn't really pay attention to how much until I dug out my summer clothes from last summer and discovered that they were ludicrously ill-fitting. My shorts gapped in the front, almost flashing my underwear, my shirts sagged unattractively at the neck and my sundresses hung on me like shapeless sacks. I was so dismayed that I whined and complained to everyone who would listen. My mother, my sister, even my father and brother. My clothes don't fit,** I lamented. What's a fashion-obsessed girl on a disability income to do?

The worst by far was my bras. The bands rode up savagely in the back, while the straps fell down over and over again, no matter how many times I fixed them. So not only were my clothes frumpy, but my bras weren't doing their job.

And that's just not acceptable. As a girl who has been as large as a 34G, I know the importance of a well-fitted bra. My bras never fit, ever, until very recently and my breasts have paid the price. Unless I'm wearing a bra, my breasts have no shape or perk to them whatsoever. They just sit there. It's one of the few things about my body that makes me truly sad, as silly as it sounds. 

We are our bodies on some level and I still remember being a girl of 11 and having to wear a D cup and crying about it because I would not stop growing. It was my first implication that my body, the third and most distant iteration of myself, was not under my control and would not be brought under my control by any amount of wishing, praying, raging or crying. 

Earlier this year, I went on a spree of bra alterations, snipping my bra bands and then re-sewing them to make them smaller. It was a janky job with mismatched thread, but what a relief from back straps riding up all of the time!  All of my bras are either ratty, cheap, too big or some combination of all three, and I am itching to replace them. 

Enter The Little Bra Company. Owner Emily Lau's line of bras are designed specifically for petite women with smaller frames and smaller chests who have trouble finding their sizes elsewhere. Both cute and practical, there are strapless bras, convertable bras, switchable straps and a number of different cuts for varying necklines.

I'm really drawn to the Lucia, with its lovely lace detail, and I've read a number of reviews that suggest it's a really good bra, if not a little big in the band.

 
I wasn't sure whether I could fit TLBC's bras, which by all accounts run quite small, and when I tried to size myself by their method I ended up with a nonsensical result. 

Underbust=28 (+4) =32

Overbust=32

32-32=0?!?

The difference between the underbust+4 and overbust is supposed to equal your cup size! A=1 B=2 C=3. When I e-mailed about it, the representative said that most people who got these 0 results where AAs and AAAs, but one quick glance at my chest reassured me I was neither. This is why I don't really like the this particular method of sizing. For a long time I had bras that didn't fit because I could never calculate my size, combined with always being incorrectly sized at places like Victoria's Secret that didn't carry my combination of smaller band and larger cup.

I'm really hoping the Lucia fits well because it is just too cute. It's nice to see bras made specifically for petites since this market is criminally underserved in the mainstream. Right now the range of sizes is from a 28-38A, 28-36B and 28-34C, with not all bras available in all sizes yet. 

Recently, I ordered the Angela in a 34C and I liked almost everything about it but the padding. I wore it around for a bit, but there was something that just felt off, and I'm sure it was the padding. Because of the shape of my breasts, an attempt to create cleavage by pushing them together is both unflattering and uncomfortable.  This makes me think the Lucia might not be such a good idea. The Sascha, a strapless bra with removable padding and switchable straps might be the best bet, even though the Lucia is just so much prettier. 

Please look forward to the follow up to this review where I hope to try on all the bras in an range of sizes at Isabella's, a lingerie store in Chicago where I'll be travelling this weekend to meet up with a friend. Guess what? She needs new bras too! Petite girl bra shopping field trip! 

**Said with plenty of First World W(h)ine.
***Still having wacky symptoms, just hitting 'pause' on the universe right now.

Haste

If my life were a video game, right now I'd hit pause, step away from the screen and make myself a sandwich. There is just so much going on and I can only parse a little bit at a time, which means there's an enormous backlog of things to do that I don't even want to think about.

Just day to day things. I closed my account at one bank and moved to another, so all my direct deposits and withdrawals have to come over. I have to set up a payment plan for the bill from my hip surgery and I offered to proofread a friend's manuscript.

My body has plans too, apparently. There is something neurologically wrong with me and I'm not sure what it is. At first, I couldn't tandem walk; that is, put one foot in front of the other and walk in straight line. Everytime I tried I'd stumble and lose my balance. Then my feet, which had been feeling numb, started tingling. Then all of me started tingling. And my balance got worse. I can't walk up hills or on uneven ground. I'm exhausted and lethargic most of the time. I can only manage to operate for a few hours out of the day. The rest of the time I can't even think straight. I can't remember if I took my pills, so I have pen marks on my arm so I don't accidentally take two doses.

These symptoms are getting worse quickly, so I'm trying to motivate my neurologist. It's hard. The MRI I had came back clear, which I expected. I don't think I have MS. But I really want to get tested for a B12 deficiency sooner, rather than later, because neurological complications can be permanent and I have enough permanent problems with my body to worry about. It makes sense: I'm a vegetarian and I was a pescetarian long before I was diagnosed with POTS or EDS.

My PCP is on vacation, her substitute is booked (I'm on the cancellation list.) I just want to steal a blank requisition and get my own tests done. Despite the fact that this blog is a never ending stream of medical complaints, I'm very discriminating with what I mention to my doctors, because I want to be taken seriously in times like this, when I know something is wrong and haste is called for.

Let the Hard Times Roll

I can manage a three hour round-trip outing, and four hours if I strain. Five hours if I'm pushing hard, but six hours is the absolute limit.

Which I found out when I spent my sister's graduation ceremony lying on a hard wooden bench outside the auditorium. It really made me angry and sad and ashamed. My sister was angry. I felt like the (literal?) Grinch who ruined commencement. Worse yet, there was nothing to be done. I was already sitting down. I was already wearing 40-50mmHg compression stockings. I had already drunk the fluids and eaten lightly to build blood volume and avoid pooling, but in the end I still ended up on a bench with my blood pressure so low that when my father came to collect me, I didn't realize where I was at first.

I always make the mistake of planning too far ahead, or not planning far enough ahead. If I can twice a year, do something related to my work (writing) it's impressive. I wrote to a close friend. Oddly enough, oftentimes I see my true feelings for the first time when I reveal them to someone I truly love and trust.

I wrote: "Live and see as much as possible is what I want to do." That has probably been my goal since childhood. I've always nurtured an endless burning curiosity for everything. I want to read everything, know everything, experience everything. But I feel limited and small and insignificant. The people I go to for help make me feel like I don't exist. I keep trying to get my life out of the "get sick, go to the doctor, get rebuffed, get sicker" track, but it's damn near impossible.

I keep looking for that space where my passion and my fate come together. I'm sure I could be a useful human machine somewhere.

This past Mother's Day I thanked my mother for never having called me "pretty." She only ever called me things like "smart" or "clever" or "kind." She taught me which attributes were to be valued and which were not. I didn't learn to do my makeup until I was 21 and my hair was hopeless until grad school, but I have a terminal degree in my field and in the end I think I'm beautiful anyway.

Jesus Lives

So my rheumatologist called me back. Thank Jesus Christ. Only God could be responsible for such an action. I was shocked. Shocked. This action clarified to me that it was my ortho who had brushed me off via PT, although both of them had avoided my calls. My rheumy out of sheer discomfort maybe? Or could it be that the nurses had not passed the message?

I'm completely unsure why she ignored my call these past two weeks and is returning it now. When I spoke to her nurse, I told her about my ortho's bad behavior, and asked if my rheumy could speak to him. I want an apology.

Calling my doctors on their bad behaviour is really important to my self-respect.

She refilled my monthly pain prescription and refilled it at three times the usual amount! With a refill even. Does this mean, sorry I brushed you off?

Why not just call me back in the first place, geez!

I'm going to talk about something else next.

My sister is graduating from University of Pennsylvania with a Masters degree in Social Work. I am very proud. I also, a few ago, found myself in j.crew buying a dress I really had no business buying because it was for a "special event."< Here is a link to it. It looks better on me than it does on the model though. I'm curvier. I have busy hair that I don't want to compete with the pattern, so I guess I'll pin it up. And then on events like this I like to wear a piece of jewelry that our grandmother left me, so maybe her sapphire ring.

But shoesss. I have heels, but I don't know if my gimp hip is up for them. Some cute yellow flats would be nice...even some simple black ones...I don't know that I have a suitable pair though. Despite my complete and utter love of all things clothes related, most of my money goes to far less interesting things.

I'm actually in a position where I have to buy at least some new clothes this summer, because I'm 20 pounds less than I was last year. Yet I have a strict budget and I won't enjoy it as much as do when I just blunder into j.crew and they happen to be having a sale.