The Sandwich Life

State of the Cynthia Address

Well, here I am. Three weeks into my diet on the auto immune protocol with lots of nutritional supplements, four weeks into dropping the foods that I showed an autoimmune reaction to in my tests (eggs, dairy, pork, chicken, wheat, soy, and alcohol). Overall, I am feeling much more like myself. I have more energy, and I don't have as much dizziness, shakiness, and other symptoms that were frustrating me so terribly. I rearranged the living room the other day. I know, it might not seem like a big deal, but I haven't had the physical energy to do that in the past year or so, or the emotional energy to even think about it, or WANT to do it. I've been getting out of the house more as well, going on some drives, looking for my beloved little Pyrex fridgies, or signs and buildings to photograph. The only downside of that, is that the one silver lining to being so quiet and still was my back didn't hurt as much. I'm glad to have the pain back however, if it means I'm feeling better otherwise. 

Ernie deserves an award for being so supportive. Once in awhile he has something else to eat, but by and large is eating what I have for dinner (breakfast and lunch, we're all on our own...and the boys sort of eat on their own these days). Last night was wild caught frozen 'ground' salmon mixed in with a ton of cabbage, with zucchini, with cumin seed (even though I can't have most seeds, I can have cumin and curry...don't know why but I am grateful) and turmeric. It was damn tasty. 

I meet with the doctor this coming week, and I am HOPING that a few foods get added back in. The diet is restrictive, and let's face it, can get kind of dull no matter how you work at it, but it's easier than it sounds really. It is pretty much impossible to go out to eat, although if I give up on the wild caught/organic for an evening I can do it. The other night at the Esquire I had the salmon salad, hold the onions and tomatoes, and I brought my own dressing. See? Doable once in awhile.

And, in other news, Bob seems to like me these days. I'm not questioning it.

Sidenotes:

1. Yes, I know Bob does look like an alien because of his eyes.

        2. I've been enjoying posting a lot of old pictures on Instagram. If you like, follow me at, of course,  thesandwichlife.      

 

 

A Grain of Sand, Friends, and House Concerts

The other evening I got something in my eye. I guess it was early evening because I remember complaining to Leo as he got home from work, while I fussed with my eye. I couldn't see anything in the eye, and couldn't manage to get rid of it. I finally decided I would just go to bed and it would gone in the morning. Denial has alway worked so well for me. Ha! I slept a few hours and then began tossing and turning, alternating trying to ignore it, and trying to flush it out. Eventually I stomped downstairs and tried eye drops. Nothing. I took another shot at flushing it out and got it. I have no idea what it was, a little white goopy thing, but damn, it hurt like hell, and the relief I felt when I finally got it was akin to when Leo's huge head finally popped out me when he was born. Lord that child had a big head.  As I patted my face dry, I went into the kitchen to get a drink of water and saw the clock, 4:58 am. I almost cried. I thought it was the middle of the night. I went back to bed as Ernie got up and finally got a few hours of sleep.

I'm trying to look at the whole thing as some kind of analogy or parable; something that feels huge to you at the time, and overwhelms you, turns out to be a tiny thing, and makes little difference to your life, only a short period of misery that fades away in daylight. So, I am looking for daylight to see clearly and see what the day will feel like without my grain of sand. 

As some of you know, I am no longer at my job. I had taken several months off while I tried to figure out medical issues to no avail. I am working with another doctor now and am hopeful that I will find a solution. In the mean time, I am fine generally, just fighting exhaustion, etc., etc., etc. I spent several hours yesterday trying to look at insurance options and lost several years off my life. That's good in the long run, as it will save several years of health insurance premiums, right? Lord, this country and health care.

Anyway...I must say, the whole "it takes a village" idea has never been more true with this house concert, or more needed. Friends have stepped up and WAY BEYOND, helping us get ready for this show and truly making it happen. Ernie (who has some minor health issues bothering him at the moment that have slowed him down) and I will be forever grateful, and realize more than ever what an incredible chosen family...a family of friends....we have. We send all of you our love.

I can't wait to see you all tomorrow night. There is nothing more joyous and healing than music, particularly with our beloved Jason Ringenberg, Fats Kaplin and Kristi Rose, and the Taxi Boys. There are still a few spaces left, so just yell if you are interested. The more, the merrier. I hope you can join us....my heart will be full!

 

 

Random Notes from the Sandwich Life

1. Texts with Owen.

2. Our summer 2018 grilled chicken is dusted with Old Bay seasoning (naturally low FODMAP!), salt, and pepper, and cooked an hour in a covered charcoal grill. Ernie turns the chicken halfway through...not over, but side to side. It ends up perfect every time. We usually do a lot of whole chickens but we've been buying big packages of chicken thighs as they are cheap, and leave lots left over for various band members who might be scouring the kitchen at some point. Owen has always said he didn't like chicken thighs...but we have converted him.

Last night I was craving the sort of mineral-ly tast of spinach, so I sauteed a big thing of it in a dash of olive oil, and once it was wilted, tossed it with some leftover rice until it was warm. It almost outshone Ernie's chicken. I also experimented with avocado and cucumber to no great success, but the avocado was nice and fresh and creamy despite that. Bad flash picture ahead.

3. End of summer flowers.

4. In excellent news, Hattie continues to be perky and is quite enthralled with some of the canned food. Not all, I mean she has her standards, but some of it. Rascal just looks at us wistfully. 

5. After a day of feeling not too bad, I woke up shaking and with weird head/dizzy sensations. A quiet day perhaps.

Onward.

Random Notes and Various Family Updates

1. The other day my therapist asked me what makes me happy, and what gives me peace. I forget which one I was answering specifically, but I said that it is times when all four of us are just sitting together talking. I've thought a lot about that this week, particularly, of course, when the four of us are together, in the living room or media room talking and laughing, getting cross and then getting over it. Me trying to take pictures and everyone else rolling their eyes at me. This has been a quiet and hard summer for me. I have yet to hear about the neurologist consult. Some days I'm not too bad and I think I can maybe start doing stuff again, and then I have a rough, wobbly, dizzy day and I wonder when this will end. The boys bring me out of myself though, and make me incredibly happy. I am so grateful for them.

2. We have, gulp, become a three car family. Something I never, ever could have imagined. A 63 bug for Owen, a 2000-something Honda for us, and a 2014 cute little Kia for Leo. 

3. Car insurance for a family of four, including two teenage boys? Ay-yi-yi. Luckily both boys are working and contributing, but still.... We will muddle through, as we always do. Leo starting working at Champaign Outdoors (and they are looking for other works---both store and warehouse I believe....15-20 hours or up to 40. If you're interested contact sue@champaignsurplus.com) and seems really happy. He's looking forward to starting Parkland, and has some trips planned...including a trip to Minneapolis to see a DJ set by his FAVORITE band, Pendulum. Owen is busy working at Black Dog, and playing with his band, the Taxi Boys. He also drums in another band that I always forget the name of. He's also starting an internship in which he'll help prepare and serve a community dinner. He got his food handling license the other day and is excited about it. He's going to have a challenging year, trying to juggle junior year of high school along with work and music. They both have grown up so much in the last year, and are so ready to finally start their lives, as they see it. They give me great, great joy. Maybe some of what makes me happy is that sense of exhilaration I get from them, even though sometimes it's balanced by frustration at things not happening soon enough. Whatever it is, it fills my heart.

4. In other news, I had a hamburger. I know, I know...this does not seem like news. But, in the past, the only gluten free buns I had tried were wretched. I had a frozen pizza a few weeks back that I didn't believe was gluten free until Ernie pulled the box out of the trash to convince me. Schnuck's also stocks their buns in the freezer section too, so I had him get them. It's a company called Against the Grain, out of Vermont, and the buns were SO GOOD.Not eating gluten isn't horrible, but I just miss sandwiches once in awhile. We had some leftover grilled chicken so I made a chicken salad and put it on the buns and we loved it. So a few nights later we had burgers. OH MAN. They were so good. Just simply done, with salt and pepper in a hot, hot, hot cast iron skillet. We didn't have any full size tomatoes, but we had a bunch of cherry tomatoes that were close to being overripe, so I quickly cooked those down into a kind of jam to put on the burgers.

Mustard, mayo, tomatoes, and some cheddar for me, Ernie had mustard, tomatoes, cheese, and raw onion on his. It seems a little thing, to be so excited to have a hamburger, but it was so delightful. We went for traditional potato chips on the side. If you're only going to eat a burger every year or so, you gotta do it right. A lousy picture, as it was dark, and I hate flash, but I still felt it should be documented.

5. In other odd food/health related news. I ate some onion and did ok. We ordered pizza the other night (note: not feeling well leads to lazy eating) and they put onion on mine by  mistake. I felt no ill effects so I cooked something with onion the other day, and again....I was ok!! I'm trying to be careful and not push it, but I was pleased. Next up, I will experiment with garlic! And bless if you if you are reading all of this as this is exceedingly dull. Ha! Life unvarnished is often dull, I guess.

6. Poor Hattie had to have her anal glands drained again. Poor thing. She has lost a good bit of weight, which has me very concerned. I can tell she feels much better so we will try to entice her to eat. We're going to take her back in two months and see how she's doing. She the last other female in the house for God's sake. I can't let anything happen to her.

 7. And then there are my zinnias of course, complete with butterfly.

Oh, and last, but not least: Monday night, August 13, 2018 at 10 pm, the Taxi Boys will be on WEFT 90.1. If you're not in the vicinity, you can stream it online. I believe they are also playing at Friday Night Live in Champaign on Friday, August 24, 2018. Not sure of exact time/location yet.

 

Powering Through, and Then Again, Not

I am still alive, I promise you. Quiet, but alive. I'm still struggling with dizziness, etc., etc., and am once again on medical leave. I tried to push through and do some stuff last weekend, but it just didn't work. I thought sheer will could do it, but I give, my body won. I started seeing a therapist, in order to cope with all the uncertainly and unknown I am feeling. It was hard to do, and I'm a bit nervous, but think it will do me good. Monday, I have a consult with a doctor re: the dizziness, we shall see what they say.

A few good things  have happened however. As always, nothing is all good or all bad.

Ernie and our beloved Jon Byrd. Such beautiful boys.

This is how Owen makes ramen:

Although I've barely been in my yard of late, my zinnias are here, and as always, they make me inordinately happy, even if glimpsed from a window.

And, after eating lots of corn on the cob, I always move to corn fritters. Good god, these were a good batch. Leftover sauteed corn and cherry tomatoes, with basil and grated sharp cheddar, a bit of flour, and an egg. 

It's hydrangea time.

In other news, my beautiful Leo decided it was time to get his  license, so he easily and efficiently did it. That boy. Man, I love him. Everything on his own schedule. Now, he and Ernie are heading off to look at used cars. GULP.

Onward.

Grace

I wanted to write about what a lovely birthday I had, and everyone who made it so. The word 'thanks' doesn't seem right, however. It's the  word 'grace' that kept coming to my mind. Perhaps I feel graced by the love of my friends, I don't know, but I felt grace. 2018 won't go down as one of my favorite years, certainly not one of the worst, but our life has been riding over bumpy roads of late, and I don't think I realized how much I needed a dose of kindness, until I got it.

My boys knocked it out of the park. Owen showed up at work mid day with flowers for me, since he was going to be at work when I got home, and wouldn't otherwise see me on my birthday. Then I got home and found that Leo (and Ernie) had done a bunch of projects around the house that I had wanted done. I felt incredibly loved. Add that to flowers and wine from friends, a stunning card from Eva, a long phone call from my sister, and messages from all over...it filled me up. I thank you all.

I decided to postpone my birthday dinner as I wanted all of us there, so we will celebrate that tonight. Ernie and I curled up, ordered Chinese, and buried ourselves in some tv watching. Later, Ernie tossed me a fortune cookie.

Look at it.

Just look at it.

I Am the Undercarriage, and Other Random Notes

1. Last night Ernie picked me up from work and took me to Black Dog for a drink. We sat at the bar and watched Owen work. He is so patient with us. He just gives us a smirk that is part embarrassed and part pleased. He stopped by a few times. At one point he had one hand on his father's shoulder, one hand on mine. I don't recall what we were talking about exactly, but I said, "Well, you're more like him than you are me." To which he replied, "Yeah, but I have you in me too. You're like the undercarriage, not seen, but just as important." I am the undercarriage. Lord, but I love that boy.

2. I got my eyes checked and, even though it's been barely two years, the doctor said he could probably give me any prescription and it would be better than the one I have. He also told me not to go cheap on the lenses, but sigh....last time I went to Lenscrafters it was several hundred dollars. Ugh. I have asked Owen to sit and look at choices on Zenni with me. I trust his judgement. He also told me the reason my eyelashes have almost melted away is not because I rub my eyes all the time, but because of the inflammation in my body. The inflammation nobody can seem to figure out. Who knew. Eyelashes!

3. I've been doing a horrid job cooking. I just don't seem to have it in me of late. We ate a lot of leftovers this week and ordered pizza one night. Last night however? Good God in heaven we had a lovely meal. I did the Alison Roman recipe for slow roasted salmon in oil. I used vegetable oil, because I didn't have enough olive oil. We grabbed some herbs from the garden, lots of basil, a bit of rosemary and thyme, and parsley. The tarragon seems to have gone missing. Oh well. I threw the herbs on before putting it in, and used lime slices, because that's what we had. It was heavenly. We had some lovely salad greens from Farmer Greg and I just made a simple vinaigrette of walnut oil, sherry vinegar, a bit of Dijon, and salt. Now we have lots of herby, salmony flavored oil to use on other things too. This recipe is pretty much fool proof. The first time I used it I wasn't wowed...until I had the leftovers. Now I love it and it couldn't be simpler.

4. Waking up to a grey summer Saturday morning and then a thunderstorm pretty much guarantees my happiness receptors going off. Oh man...now there's a train whistle. How much better could this get? I'm so content that I'm not even feeling like I need to get up and straighten that lampshade.

5. My dizziness continues to recede. I still have some waves of it, but it is much better. More appointments this week. I remain pretty damn exhausted, despite the B12 shots every two weeks, but overall better, so I can't complain.

6. In HUGE news in Leo's world, there is a Pendulum DJ set in Minneapolis, and it's an 18+ club. This is VERY exciting news...and so a trip to Minneapolis is being planned.

7. Oh, and look what my friend Ella brought back from Canada!!! 

Well, this has been a long list of random notes. I've been too tired to post all week so have stored them up. Hope everybody is well.

Onward.

 

 

Random Thinking

A quiet weekend again. I've been reading up on vestibular disorders, as we seem to have finally narrowed it down to that regarding the issues that are really bothering me at the moment. I read the list of symptoms (I've copied some below) and it felt like, "bam, bam, bam....yes, yes, yes." It is comforting to know I'm not crazy. It is so lonely to feel symptoms and not be able to make sense of it. Hell, I know I'm repeating myself. I said that in the last blog post. This has just been a little...mmmm....pick your adjective....and I find this comforting. 

Last night I slept twelve hours, although some of it was restless, with all sorts of strange stress dreams (although you'll be glad to know that Anthony Bourdain really liked me when he met me in one of my lengthy dreams). I went to bed before dark...always a sign that you really need the sleep. I didn't even stay awake long enough to talk to Owen after his shift at Black Dog. Hattie and I curled up and I attempted to read, gave up, and played, as I do so many nights, some Aaron Lee Tasjan. This morning I am medicated up for the dizziness and headaches and so am spacey. I tried to read but it's hard to focus. Oh, and first I downloaded a book from the library and realize I had read it recently; I went and downloaded a second one...same thing. Third time was a charm...but I'm not holding out for  comprehension and retention!

Last night's dinner was a victory....about ten minutes to make, simple, and delicious. Smoke pork chops from the U of I Meat Lab, just browned in a cast iron skillet for a few minutes, mashed sweet potato with a bit of lime and hot sauce, and sliced cucumbers. Simple really is best often as not.

And as always, Rascal continues to watch over us all.

Onward.

 

VESTIBULAR DISORDER SYMPTOMS

VERTIGO AND DIZZINESS
• Spinning or whirling sensation; a feeling the person or world moving when it is not (vertigo)
• Symptoms can be present while sitting still, in specific positions, or with movement
• Lightheaded, floating, or rocking sensation (dizziness)

BALANCE AND SPATIAL ORIENTATION
• Imbalance, stumbling, difficulty walking straight or when turning
• Clumsiness or difficulty with coordination
• Tendency to touch or hold onto something when standing, or to touch or hold the head while seated

VISION
• Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled
• Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially troublesome
• Sensitivity to certain types of computer monitors and digital televisions

HEARING CHANGES
• Hearing loss; distorted or fluctuating hearing
• Tinnitus (ringing, roaring, buzzing, whooshing, or other noises in the ear)

COGNITIVE
• Difficulty concentrating and paying attention; easily distracted
• Forgetfulness and short-term memory lapses
• Confusion, disorientation, difficulty comprehending directions or instructions
• Difficulty understanding conversations, especially when there is background noise or movement

PSYCHOLOGICAL
• Loss of self-reliance, self-confidence, self-esteem
• Anxiety, panic, social isolation
• Depression

 

Raisins

Well, I have been poked and prodded with the best of them this week, and yet still don't really know what's going on with me. The dizzy spells and lightheadedness are a bit better but still there. Wednesday I had the pleasure of a pelvic and vaginal ultrasound. I've had these before and don't mind them terribly but this one wasn't a load of fun. It's one of those things you are supposed to have a full bladder for, which always makes me anxious, as once you given birth to a child whose head was off the charts (thank you Leo), your bladder control is never quite the same. But Lord only knows that I am a good girl, I mean I'm Polly Voelkl's daughter, so I followed the instructions to a T. An hour before the appointment I guzzled 40 ounces of water, finishing within 20 minutes. I toddled off to the North Clinic and went to Radiology in the basement. They called me in a bit early. The technician was nice-ish but seemed suspicious of my water intake. "How much water did you drink?" followed by a frown as she looked at my bladder. "What time did you finish?" She just looked at me skeptically when I told her. I guess it was full enough as she kept going. Normally when you're on your back looking up they have kind of shield over the light so it doesn't blind you. Evidently there was something wrong with it as it was kind of a bare bulb blazing at me. Finally she said I could empty my bladder so I tried to pull my dress down as I got off the table, stay steady, and headed down the hall...sort of unnerving after  being in a dark room and then plunging into a bright hallway with a huge blind spot blinking in front of your eyes. I made it back to start the other ultrasound. It was ok, but more uncomfortable than those in the past. Midway through another technician comes in and I guess they switched...which seemed weird without them telling me. Generally speaking I like to know who is putting something in my vagina. They finally finished and left, leaving me to get dressed and wander through various waiting rooms until I found my husband. I made him buy me a glass of wine as I felt I deserved it.

Oh, and during the exam they told me that as you get older your ovaries shrink to the size of raisins, so that's why they were having problems finding them. I found this moderately depressing.

Raisins.

The poor little things.

Yesterday was the echocardiogram. I was a little nervous about this one. We trotted off to the Heart and Vascular Institute, signed in, and got our little restaurant pager. The technician was very nice. Ernie sat in the corner and read a book and I just laid there while she moved my breasts around trying to get to my heart. It turns out my breasts were in the way a bit...took another technician, and some damn hard pressing to get what they needed. I have a sore spot from it, and my bra almost killed me today but I had to wear a bra as I had to go to ANOTHER DOCTOR'S APPOINTMENT. HOW DID THIS ALL HAPPEN TO ME? WTF?

I'm supposed to get results next week. So I guess I sit in limbo a while longer with my two big breasts and my raisin size ovaries.

Life is so undignified.

 

 

Dots. All the Dots.

A moderately frustrating week. Busy, but not bad, at work, but my back went to hell on Wednesday. Thursday I managed to somehow lay flat and still work...creating a little nest for myself on the red couch. Yesterday I worked until noon and my back was really terrible the whole time. I had lunch with my beloved Renee, who lectured me on taking care of myself and advocating for myself with the doctors. I don't think I was the best company, because I was hurting so bad, but it felt good to have someone lecture me out of love. I went and laid flat on the couch for awhile until I headed back into work for an event. I was supposed to be standing outside at a table but Nancy kindly lugged out a chair for me. I took some Tramadol to try to get the pain under control but it just made me woozy and and nauseous. It's hard to decide which is worse. I got home pretty early and collapsed. Ernie and I chatted for a bit and we watched some tv. I was too tired to really eat much. This morning I woke up hungry but had to go to get blood work for my doctor's appointment on Monday. I got there and of course there was no order for the blood work. And it's Saturday so they can't call the office, and my appointment is Monday at 8 am. Damn it. I went back and forth between postponing it and going anyway. I think I'll go despite the lack of tests. I'm frustrated with my health. I feel as though every part of me is getting farmed out...some to a gastroenterologist, some to a dermatologist, some to a gynecologist, some to an opthalmologist....and none of that even includes my back. I just want someone to try to connect the dots. I feel like the dots have to connect somehow. Dots connect, right? Isn't that what dots are supposed to do?

It all made me a little frustrated and a bit sad. I made Ernie take me out to Los Huaraches Moroleon for breakfast, which helped. It's not the easiest thing to eat at a Mexican restaurant without garlic or onion, but I tried. I think I ordered poorly and I ate the rice which I'm sure had garlic and onion but what the hell. It was nice to hang out with my guy.

Now to start the ribs for our last Outlander Fest tonight.

Onward.