Food & Stuff ~ by Sam

(in which I swear once, which is not a lot, since I am talking about food & stuff)

Alas, it was not meant to be.

I really thought Marian might pull through, until I awoke one day to find nothing but two bare stalks.  I think, this time, she truly is a goner.  I am so sad.  The next time I was at the nursery, I asked what I might be doing wrong for my maidenhair ferns, and was assured that I have done exactly what I should.  It seems my home just might not be the best environment for them, for whatever reason. It was suggested that I try a different, heartier variety of fern.  We selected this lovely sliver lace fern, which i promised to not to name, just in case…then promptly name Mathilda as I was pulling out of the parking lot.  Apparently, all of my plants will be named after literary characters.
Mathilda

I am going to try to refrain from buying (or killing) any more houseplants for some time.  Instead, I will work on trying to keep alive the ones I have.

In the interest of posting about something other than houseplants ~ ‘though I do love them ~ I thought I would share some of the meals I’ve been eating.  Because no one ever does that on the internet.  It’s a totally revolutionary idea.

I know.  Like, half of you ~ more than half of you ~ already walked away.  That’s okay.  The rest of us are still here, and we like each other just fine, thank you very much.

But food. Well, you know, food and I have a storied history.  I loved food when I was a kid.  I loved some foods other people might find really weird.  I ate stuff like butcher bologna and fried brains (no, really, y’all ~ I tell my kids I’m actually part zombie, as a result of this culinary adventure), and slim jims, and those hot sausages that came in wrappers like slim jims.  I still love red beet eggs,  and my mom’s ziti and shoofly pie ~ all of which I am pretty sure I am not supposed to eat, and that is a travesty, by the way.  I ate crabs and scallops and lobster and shrimp, and clam chowder.  I mean, I grew up in Maryland.  We ate seafood.  It’s kind of a thing.

Now…well…

First, I had an eating disorder.  When you have an eating disorder, you don’t hate food.  I think that’s a common misconception.  Maybe it’s more of a love/hate relationship.  I became positively obsessed with food.  I knew everything about it.  I was obsessed with what nutritional value of everything, how many calories it had, what was the fat content, sugar content, serving size… Not that any of it mattered.  I wasn’t actually eating much of it.  I did love to cook it.  For other people.  And watch them eat it.

Then, I became (and have remained) vegetarian.  That’s working out okay for me.  I mean, y’all can have your brains.  I have to say, I am pretty much over that.  I was vegan for about 8 years, and I felt pretty good at the time, but I’ll admit, it was difficult, especially when I got pregnant with my first child.  That’s about the time I decided to start eating cheese again.  I really like cheese.

Which totally doesn’t matter.  Cheese hates me.  With a passion.  It turns out, I am allergic to milk protein.  So, some years (yes, it took years ~ many, painful years), and many health problems later, I gave up all dairy products.  I miss cheese so much it hurts ~ but you know, not as much as that feeling in my throat when I ingest it, so this is really much better.  (I’m also now allergic to shellfish, which I had already given up eating, for what it’s worth, which doesn’t impact my diet, but is a weird side note considering that I ate it as a kid, I guess.)

Also, (and, well, really, I should have thrown this part in a while ago, because it originally reared its ugly head in high school), I have IBS.  That’s Irritable Bowel Syndrome, in case you didn’t know, and, as is evidenced by the name, it is just a festival of fun times, as I am sure you can imagine.  I won’t go into detail.  I mean, it involves your bowels, being irritable.  You can figure out what that means.  Or, you know, google it, if you want to, but I really can’t imagine why you would want to do that.

So, here I was going along, doing my thing, trying to be healthy ~ and I was really making a concerted effort, too, because I had some long-standing terrible habits to break.  Habits like not eating breakfast.  Forgetting meals altogether.  Eating chocolate for a quick burst of energy to get me through to the next meal, and then not taking time for the next meal.  Eating things like the crusts of kids’ pizza, the ends of their poptarts, and the few green beans that were left in the pan, and thinking, “That was probably a meal, right?”  Drinking a frappuccino instead of lunch.

I figured this was bad for me, bad for my body, and a terrible example for my kids, and I decided to do something about it.  I started doing things like eating more vegetables and fruits.  I love roasting vegetables ~ broccoli, asparagus, brussels sprouts, cabbage ~ especially with lots of fresh garlic, balsamic vinegar and olive oil.  I love artichokes.  I don’t like fruit, but berries are good for you.  I ate berries, even though I don’t like them.  I actually like pears, and some kinds of apples, and I can eat about half of a banana, sometimes, but only half.  I was trying with the fruit.  I started drinking coconut water. You hear so much about how good for you it is.  Man, I really bought that.  I used coconut milk in my coffee drinks, instead of soy, because I know too much soy is bad for you, and I already use some soy.  I was eating whole grains.  Oh, and beans.  I was trying to make sure to get enough protein, but from a variety of sources ~ nuts and nut butters, seiten, quinoa, seeds, tofu and tempeh, some commercially available meat substitutes, and beans.  I love beans.

For some reason, my digestive issues got worse.  At first, I thought, maybe it was just that I was eating meals that were too large, so I started eating smaller, more frequent meals. Then, I thought maybe it was just that was still getting used to eating well ~ maybe my body was adjusting to digesting all those fruits and vegetables and stuff.  Maybe it was too much of a transition all at once.  I even thought maybe it was a medication side effect…or maybe it was a symptom of something else.

The truth was much simpler: my IBS was completely out of control.

So, after one doctor’s visit led to another doctor’s visit, which led to some labwork, and a referral to a gastroenterologist (and more labwork ~ with more to come), I find myself on a very restrictive diet.  I am currently on a gluten-free low FODMAP diet, and it is the most restrictive diet I have ever had.  I am forced to be obsessed with food again, which is a little bit scary, to be honest, and I have to be careful not to fall back in to old patterns.  I think the key, in that regard, is to keep eating the food.  That, and the fact that the goal this time is to keep the food in my body and maybe actually gain some weight, which is really weird for me.  But it must all look frighteningly familiar to people who  have known me through all of this, and it must be worrisome for them, too, because here I am, again, very thin (due to medication) and obsessing about food.  My understanding is that at least some of this could be temporary, and then we can start trying to figure out what foods, specifically cause problems for me.  For now…

Ah, well, it is what it is.

If you are interested, you can look up the low FODMAP diet. For me, it’s basically like this: Make a list of all of your favourite foods. Write: “DON’T EAT THESE” at the top. Now, start eating eggs again.  What?  You don’t like eggs?  Fuck you.  Eat them anyway.  You don’t eat meat, and there are only like 4 other protein sources on this list that you’re allowed to eat.  Eat the freaking eggs.

If you have IBS, or another digestive disorder, you might want to talk to your doctor about whether or not this plan might be helpful to you.  I know, I just made it sound super appealing.  (sorry.)

Here, to entice you are some pictures of things I have been allowed to eat, to prove that it is not actually terrible:
IMG_5274
Vegetable curry w/ quinoa

IMG_5304
Maple walnut oatmeal with bananas & cinnamon

IMG_5302
Baked potato topped w/ veggie chili and avocado

IMG_5336
Egg salad, avocado, red pepper & olives

So, maybe I make it all sound very dire, but I am eating a lot of beautiful, delicious foods.  Most importantly, I seem to be getting it right, most of the time.  Eating out is still difficult, because it’s a bit of a craps shoot.  You know, you order the potatoes, and hope they aren’t seasoned with anything your gut’s gonna hate.

Feeding the whole family is a challenge, because my needs often require a little more creative meal-planning ~ and it does get a little bit redundant, sometimes.  I’ve hit on some recipes I can make that we all like, and, at the very least, I can often make a meal from which I can easily adapt something for myself.  If not, I usually have leftovers in the fridge, because I tend to cook for more than one meal at a time, anticipating that need.  I am still learning, but I’m getting there.

In the end, if I feel better, am able to keep the foods I eat in my system long enough to actually process the nutrients my body needs from them, and do important things like socialize with other humans, take my medication and, you know, absorb it so that it actually works, I think that’s a vast improvement.  You know, when things like that start working, the hope is that I will be able to do more of the things I want to be doing.

I would say things are looking up.

Today, for instance, I was able to get up and go with Shane to help sort Girl Scout cookie orders at the warehouse, and bring back all of the cookies Kaia intends to sell this season.  I loaded and unloaded cars, grabbed a coffee, came home and practiced banjo, cooked dinner, sat down and wrote this very long blog entry.  Now I intend to clean up a bit, and try to get my PT done before bed.  It might not sound like a lot, but I think it’s not bad for a Saturday with chronic pain and a digestive disorder.  I mean, let’s be honest: there are still a lot of days when I just want to pull the covers back over my head as soon as I wake up, but, you know, I have a Girl Scout, and those cookies aren’t gonna drive themselves home.  My banjo’s not gonna play itself.  I mean, come on ~ I’ve got stuff to do.

cookies

 

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A Good Egg ~ by Sam

I keep trying to convince myself that I like eggs, because they are approved for my diet. The thing is, I don’t; and, to be honest, I am not convinced they like me. They are high in protein ~ although the reasons for this freak me out somewhat, and I am probably a wannabe vegan, having been one for about 8 years in my youth ~ and the rest of my diet is so limited that I feel I really should give it the old “college try” (but not “college,” really, because some of college would account for part of my vegan years).
 
Anyway.
 
I’m trying. To like eggs. I like egg salad, but I am very particular about it, I have to be in the mood for it, and it probably has to be my egg salad, in just the right amount, and probably on toast, maybe with a tiny bit of lettuce. Usually. The other day, I scrambled a single egg with all of the vegetables I could find that I could possibly eat, and some fresh herbs. I added salt, pepper & nutritional yeast, then put on the lid and let it sort of steam a little at the end. It took on an almost soufflé-like texture. The only reason I could tell there was egg involved was because it stuck together. That was okay.
 
Today, I cooked diced potatoes, carrots, and Beyond Meat grilled chicken strips in a skillet. Then, I cooled them and mixed in finely diced egg and all of the ingredients I would to make a curried chicken salad (except that I didn’t have any chutney, which I am not sure I could have anyway, which would be tragic, so let’s not think about that). So, it’s basically like egg, potato & (vegetarian) chicken salad all rolled into one ~ and seasoned with curry.
 
I scooped some in to half of an avocado, and put away the rest to have tomorrow. I think the potato, chicken strips, carrots, curry and dressing did a fine job of disguising the flavour of the eggs. I will eat the rest tomorrow. I am pretty sure the combination of egg and chicken strips must be fairly high in protein.
 
I am still not convinced I like eggs.
The jury is out on how they feel about me.

Out With the Old…

I am not going to pull any punches, 2017 was a tough one.

I know, at the end of a year, we are supposed to stop and count our blessings, and, as always, our year has been filled with those; but I would be lying if I sat down and wrote a post about how great the year has been, and pretended it hadn’t been hard.  It’s been a hard year, in a lot of ways, for a lot of people I know.

I am not talking about politics.  I know that the social and political climate has been difficult for a lot of people to navigate, and that has put real strain on familial relationships and friendships.  I know there has been a great deal of social upheaval, and stress, and anxiety, and real life consequences as a result of what is happening in the political arena, because those things impact us all every day.  I don’t want to discount that, or for anyone to think that I am not taking those issues into account ~ they are part of the reason this year has been difficult for a lot of people.  In fact, for some people, that is the primary reason this year has been so difficult; because, for some people, those issues directly impact their daily lives so profoundly that they can’t help but think about them every single day.  So it’s hard for me to come here and say, “but that’s not what I’m talking about.”  Perhaps what I meant to say was, “That’s not all I’m talking about.” I would be remiss not to mention it at all.

There were deaths in families, and deaths of long-admired celebrities, as there always are.

Here, in California, we recently had the fires, and so they are fresh in my mind, but all over there the world, there has been disaster, and violence, and so much suffering, anguish, and frustration.  It’s difficult to even know what to say.  Some days, it felt like the world had gone mad.  It was hard to want to read the news ~ there was a genuine fear there.  What else could possibly have happened?  

On a very personal level, it’s been a difficult year for me, in regard to my health.  If I were to say, “I don’t talk about my health much,” you would probably think I’m being ridiculous.  It seems I talk about my health all the time.  But, really, I don’t.  Or, perhaps, I do more than most people, but there’s a lot I keep to myself.  So, when the CRPS started flaring up, I didn’t mention it, because, frankly, I feel like all I ever do is complain about my health issues, and, quite frankly, people must be tired of listening.  Nevertheless, it did start flaring up.  I figured it was probably because I had slacked off on my exercise routine.  I wasn’t doing my PT every day, and I wasn’t walking as much as I should.  Oh, and also because I had cut the dosage of my daily medication down just slightly because, in combination with the other medication I take daily ~ for that other issue that I am still reticent to discuss, because I STILL don’t have a diagnosis, so I feel weird about actually saying much about it ~ it was making me VERY SLEEPY; but only at night, after I took it, and upon waking, but this matters, when you have school-aged teenagers, who might still need your help, sometimes…and they do, sometimes, and I am their mom, so I want to help. (Do I win an award for that run-on sentence?  I think it was fairly spectacular, ‘though I am not convinced it was actually a sentence.)  So, I decided, first, to try doing all of the Right Things.  I exercised.  I took my medication.  The CRPS kept flaring.

I did the logical thing.  I kept going to my class taking kids to school, doing chores, attending performances, meetings, shopping, driving all over town, picking up, dropping off, running errands… You know, all of the usual “mama” stuff.  I kept tie-dyeing things, and playing my banjo when I had time, but it kept feeling like I had less and less time.  Everything felt like it took so much longer.  You know, because it did.

While all of this was happening, other things were happening, too.  I wasn’t the only one having a hard time.  Other people I knew were having hard times, too; and, while I am not at liberty to share other people’s hard times, you know, when people you care about are having hard times, you want to help, and you probably try to, and I hope that I did.  I think, at least, I tried.  I keep trying, and I will keep trying.  I feel like, a lot of times, I fall flat on my face, or my back.  Sometimes, I feel like I started there, and, if we are both there, maybe we can just lie there, hold hands, look at the stars, and know that, whatever is going on right now, it will all be better someday.  It will.  I promise.  It always is.

Also, while all of this was going on, I was having increasingly terrible digestive issues.  I’m not going into detail, because nobody wants that (and also because I don’t have all of the answers yet), but, basically, it breaks down like this:  I was diagnosed years ago with IBS.  I hadn’t had a lot of symptoms for a very long time.  Then, in recent years, I started having trouble again.  This year has been the absolute worst.  (This is NOT the undiagnosed issue I’m not talking about.  That’s still something else.  Sorry to keep being cryptic about that.  If you know me, I’ll probably talk to you about that ~ I just feel weird putting stuff down in writing and out on the internet about that one.)  So, I saw a gastroenterologist who has put me on a low FODMAP, gluten-free diet.  I was skeptical, but cautiously optimistic.  I have to tell you, after two weeks on the new plan, not only are my digestive problems virtually a thing of the past ~ as long as I stick to the plan, which is very restrictive, and difficult to stick to when I am away from home, and can’t cook my own food ~ but, now that my digestive issues are under control, the medication I am taking for that other (cryptic) issue seems to be working well again, because my body is actually able to absorb and process it.  I still need to return for a couple of tests to make sure we aren’t missing anything, but the good news is, things are much better.

So…back to the CRPS:

While I was busy getting everything else under control, it was still flaring out of control. To the point that I was having difficulty getting around to complete simple tasks like a trip to the grocery store.  Pain was interfering with my ability to concentrate, focus, sleep, eat, remember things.  It was bad.  Worse than it had been in a long time.  I contacted my neurologist and my pain management doctor ~ to see if there was any way we could change either medication, since, in combination, they made me SO SLEEPY.  To make a long story short (and remain as cryptic as possible), neurologist said something like, “This medication is controlling your symptoms, so NO.  We won’t be changing that.”  Upon reviewing that situation, we all agreed, this was a good plan.  After an examination, my pain management doctor determined that the CRPS was not just flaring up, it was progressing.

As you can imagine, this is not the news I was hoping to hear.  He scheduled me for a lumbar sympathetic nerve block, as soon as possible, in hopes that I would get some pain relief, and that we might stop any further progress.  That would be December 21st, and I would need to rest for several days after the procedure.  Perfect timing.  I hadn’t been able to accomplish much shopping, due to pain, and now, I had to be completely done by the 20th, so I could rest until Christmas Eve.

But, there was nothing else we could do, and just that little glimmer of hope that, maybe, we could stop it from progressing…or, at the very least, get a little bit of relief.  So, I agreed.

It’s been 10 days since I had the nerve block.

I think I must be in that “might get worse before it gets better” phase.  This hasn’t happened to me before, but I am trying to be optimistic.  They say you might not know until at least two weeks after how effective it will be.  So, I am waiting.

During all of this, there was this whole swirl of life events going on around us, and, quite frankly, I couldn’t keep up.  I tried.  I tried to attend to events I could attend.  I went to the performances and parties, I smiled, I chatted, I tried to make small talk, but, you guys, I am an open book.  I’m not good at this.  I am a terrible liar.  I don’t just wear my heart on my sleeve; it’s stamped all over my face.  Which is weird, because I’m an actor, right; or, well, maybe I was, many years ago.  But I think that’s different.  I like to think, in my real life, I’m not assuming a character when I interact with people for whom I actually care; and so, it’s different.  In real life, I am an open book.  If I am upset, or angry, or tired, or sick, or sad, or anxious, or lonely, or in pain, the whole world will know just by looking at me.  I thinkI have been every one of those things this year.  I suppose we all have, at some point, every year.

Some great things happened this year, and others are still in the process of happening.  Justice finished her Child Development certificate, and CPR and first aid training, and was accepted to the Music Performance program at her college.  Hallie is a Senior in high school this year, and is busy earning A’s in classes like AP lit and Digital Imaging (things I couldn’t even grasp in high school ~ and let’s review the fact that I didn’t make it through Senior year of high school, so kudos to kids who do), and looking into art schools for after graduation.  Kaia finished middle school and moved on to high school where she is participating in and loving Marching Band. She finished her Computer Science class early, and was allowed to move on to the AP course in independent study.   I took my first ever ASL (American Sign Language) class, and finished with an 87%, which is a B, but a high B, so I’m cool with that.  I probably can’t take another class just yet, but I will keep practicing what I have learned, so I don’t get too rusty before I can continue.  I do plan to continue.  Shane has worked on so many projects that I just can’t name them all ~ and I probably shouldn’t here ~ but I can say that he was recently able to purchase a used 1999 Jeep Cherokee 4×4 that appears to be in very good condition (fingers crossed).  I bought him a repair manual, so he can maintain it.  It’s a vehicle he’s wanted for a long time, and it means that, with Justice’s busy schedule, and with us on the brink of having a 4th driving in the household, we finally have a 3rd car.  I think it should make think easier for everyone.

There have been weddings, and engagements.  There have been children, grandchildren, nieces, nephews, grandnieces, grandnephews ~ oh, heavens!  Not all mine!  I just mean, in the world, there have been these things. In lives of my friends and family members, I have watched them unfold.

So, as I look forward ~ ever forward, never back…well, occasionally, wistfully, back, but never, ever with regret ~ it is with the very highest of hopes.

Here’s to 2017, and all of it’s challenges. Here’s to the tears we’ve wept, and the losses we’ve suffered.  Here’s to the lessons learned, and to every victory, every happy memory, every blessing and every joy this year has brought with it, as well.  For some, this might have been the best year yet.  For some of you, this was the year you were married, or the year your child was born, the year you finally bought your first home, or brought home the pet that filled that hole in your heart and made your life complete.  So here’s to 2017, for everything it’s been to every one of us.

2018, we see you on the horizon, and we have pinned our hopes on you.

We’ll see you soon.

 

 

Nerve-Wracked ~ by Sam

Peace12:21:17.JPGIt’s the evening of December 21st, and I am not rushing around checking things off my shopping list.  I’m not baking sweet treats, wrapping gifts, cleaning up after our annual Tree-Trimming party (or planning for yet another very late one, because we didn’t get it together and plan one). I’m not planning to receive out-of-town guests, or planning my out-of-town trip for Christmas (‘though we will be heading out of town soon after).

Nope.  Not doing any of that.  Which is weird, because, normally, this close to Christmas, I’d be running around like that chicken you always hear about.  Right now, I’m lounging on the sofa after a nerve block at 2:30 this afternoon.  I debated posting about what’s been going on lately.  I feel like I’m THAT FRIEND.  You know the one.  The one that talks too much about their health problems?  And so…I just didn’t really say anything about this for a while.  Honestly, when the CRPS started flaring up again, I thought, “Well, I haven’t been walking every day, and I haven’t been great about doing my PT, and I had to lower the dose of my medication because it interacts with the medication I have to take for that other thing, and makes it really hard for me todo things like stay up late, and get homework finished, or help kids with whatever they might need, or, you know, wake up in the morning and make sure everyone gets off to school without a hitch….so…it makes sense that it’s flaring up now.”  I decided to try fixing those things.  That should work.  Right?

But it didn’t.

So, when I contacted my pain management doctor and explained the situation, he, naturally, wanted to see me.  After assessing the situation he determined it wasn’t just flaring up.  It was progressing.  The pain was moving much farther up my leg than it had in the past, and that is not a change we want to see.  We discussed various options.  Since I can’t stop taking the other medication, upping the dose of the medication I currently take for CRPS is not a great option, since it is already, in combination with the other med, making me very sleepy at night (which, at least, is the right time to be sleepy ~ and, hey, it’s a solution to my longstanding battle with insomnia).  Adding another medication at this time is also not at the tops of our list since a) I currently take two daily meds, and b) the other meds we might consider adding next are things I had already tried, without much success, as treatment for fibromyalgia symptoms years ago, so he doubts they would be helpful here.  Because we have had success with lumbar sympathetic nerve blocks in the past, it seemed like a no-brainer.

The only downside was the timing.  Due to both the amount of pain I was experiencing, and the fact that the CRPS was progressing and we needed to try to nip that in the bud, it was important that we get me in for the nerve block ASAP.  Right now.  You know, at Christmastime.  Me.  Right now. At Christmas.  Because it’s not like there’s other stuff I would rather be doing.  Like going to parties.  And hosting a party.  And baking stuff for teachers, and friends, and family.  And decorating my home.  And buying and mailing gifts. And going to Mass.  And attending shows and concerts. And driving through all of the lights, and walking through the Zoo Lights, and visiting with friends, and shopping.  Did I mention shopping?  Shopping?  Shopping with my kids!  I want to be shopping with my kids.

But instead, I am sitting here, resting, for several days, in hopes that this nerve block does the trick; because, quite frankly, if it doesn’t, I’m back to not doing a lot, which is kind of what I was doing before, in case you hadn’t noticed.

By the way, if you had noticed, recently, that I kind of had my head in the sand, well, now you know why. Things started getting bad while school was in session.  So, I suddenly found myself needing to juggle kids’ schedules, my schedule, Shane’s schedule (you know, the usual stuff), but with a lot more pain than usual.  I am used to pain.  I have pain that I manage ~ hence the pain management doctor ~ but that’s the thing: we work to keep it manageable.  Suddenly it was totally unmanageable pretty much all of the time.  The problem was, I just didn’t have the time to stop and do anything about it.  I had all these things I needed to do (or, at least, that’s what I kept telling myself), so I kept doing them.

I guess it sounds like I’m whining.  I guess that’s because I am.

See…that’s why I avoided talking about this.  It’s hard to do without sounding like that.  Ugh.  I feel bad for dropping so many balls.  I did not give any teacher gifts.  I forgot to RSVP for virtually everything.  Most nights, I looked up and went, Oh, crud.  It’s like 8pm, and I haven’t even started dinner.  Then, we ate dinner (such as it was) at some time between 8:30 and 10:00.  I know.  I totally rock.  More often than not, we ate leftovers, or I told people dinner was “catch-as-catch-can.”  Again.

This isn’t coming off the way I want it to.  It’s frustrating.  I don’t need people who read this to come back saying to me, “I’m sorry you have pain,” or “I’m sorry you have to deal with that.”  I mean, I totally appreciate that sentiment, and I believe that you mean it.  What I mean is, I am not fishing for that.  I just…What do I want?  I guess I want people to understand what’s been going on with me, and why I have been kind of “out of it” recently ~ and that, hopefully, things are going to get better.

I decided to sit down and write this because I figured people have noticed.  I’m a mess.  I am running behind on everything.  Now, you know why.  So, if you’ve been fed up with me recently, I apologize.  I probably should have explained sooner what was happening.  In some ways, it’s just all part of the same old thing, and I guess maybe I get tired of explaining ~ I guess I think people get tired of hearing it, too.  But maybe you can understand that, if I say, “It’s been a rough day (or week, or time, or whatever I might say that sounds similar to that)” or even if I say nothing, but I just don’t do a great job of keeping up with things.  Maybe you can think back on this post, and think to yourself, “Ah, yeah.  I get it.”  Maybe we can all just sort of do that for each other.  Just try to assume that we’re all trying our best all the time, and that, if we aren’t getting things done, or aren’t getting them quite right, there must be a good reason.

Moving forward, I’m hoping to end this year, and start the next, on the upswing.  I don’t want to be just sitting around doing nothing, so I think maybe I will sit here and work on some scarves, and practice my banjo, instead.  Maybe I’ll read a book.  I’ve already managed to do some online shopping.  It was late, but at least I got it done.  The nerve block went well.  I mean, we won’t know for a while whether or not it actually did the trick, but at least I didn’t pass out or anything.  Things are already looking up.  Now, if only I could figure out how to cook and clean while lounging on the sofa.

Cold Hands, Warm…muscles? by Sam

One day last week, while I was making dinner, my hands suddenly turned bright red and felt as if I had poured bleach all over them. Thinking I must have come in contact with some allergen, I immediately stopped what I was doing, and thoroughly washed my hands. The redness and irritation greatly subsided in 15-20 minutes, but my hands remained irritated, and the skin was peeling, as if I’d had a severe sunburn. Over the next few days, the symptoms recurred, so I contacted my PCP via email, including a photograph of the initial reaction. I supposed there were three possibilities:
a) the CRPS was spreading to other parts of my body (rare, but not unheard of)
b) these symptoms, ‘though not like any I’d experienced with it in the past, might be related to Raynaud’s (to be fair, the symptoms were not exactly like CRPS, either, but it does involve both redness and burning pain)
c) this was something entirely new and unrelated to any of my previously existing conditions
     We played phone tag for a few days until I finally got a call from a nurse on Monday of this week. My doctor felt it was most likely that the symptoms were, in fact, a more extreme manifestation of Raynaud’s than I’d experienced in the past, and that, as my symptoms seemed to be getting more severe, it might be time to consider medication.  Hence, I was referred to a rheumatologist. That appointment occurred on Thursday of this week.
     As luck would have it, the medications used to control symptoms of Raynaud’s Disease are blood pressure meds; and, because my blood pressure is low, my doctor doesn’t want me to take them.  You see, unfortunately, they could cause my blood pressure to drop even lower, and this could result in dizziness and falling. Falling has already been rather a chronic problem for me, and it has been deemed an unnecessary risk, as has dangerously low blood pressure.
     So, I have been given recommendations to step up my efforts to stay warm. These include things that might seem obvious, like using hot water bottles and heated gloves/socks/blankets, warming creams, taking warm showers when I come in from being outside, making sure to keep my hands and feet covered and protected, even when I don’t feel cold, and keeping my core warm. They also include things that might seem a little less obvious, like increasing my salt intake, in hopes of raising my blood pressure, and building muscle mass. The challenge, here, my rheumatologist pointed out, will be striking a balance in which I work out to build muscle mass, but am careful not to accidentally lose weight. This will involve adding protein-dense calories to my diet, which means adding food to my diet.  (I know.  This doesn’t seem like brain surgery.  Stick with me.  It’s trickier than it seems.)  I started working on this as soon as I got home on Thursday. I immediately baked a loaf of peanut butter bread, replacing part of the flour with almond flour.  Then I made myself a peanut butter and jelly sandwich with it.  I figured, that way, at least I am getting lots of protein (and lots of calories ~ yay!)  Because that working out and not accidentally losing weight thing?  Believe it or not, that really is a challenge.
     I know. This all sounds sort of stupid. But…food is hard.  I mean, I have had food issues for a long time.  First and foremost, there are the lingering eating-disorder-related issues, which will always linger; but, on a more basic level, there are all of the food allergies and sensitivities.  I am allergic to milk protein (and elderberries, and echinacea, which don’t come up much, so that’s okay, really.  Oh, and shellfish ~ which never comes up, because I’m vegetarian, but does somewhat complicate eating at restaurants, or buying some prepared foods).  I also have IBS, and, while it seems to be fairly mild most of the time, it can rear its ugly head at any moment, and, at those times, it is triggered by: eggs, white/refined carbs (so, any bread, pasta, or baked goods made with that, white bread, white rice ~ basically, I do better with whole grains and more fiber in my diet), and fried foods.  Then, there are times when I think it is triggered by food.  Oh, also, stress.  It is also triggered by stress.  Then, add to that the fact that I am on a medication that makes it hard for me to keep on weight, even when I am not working out.  So, now, I am trying to eat the right things that won’t trigger my IBS, so I can be sure not to lose weight while doing PT, so my CRPS won’t flare up, so I can then work out enough to build muscle mass to try to keep myself warm ~ but not so much that I accidentally work off any of the extra peanut butter I ate.
     Because then, maybe I will be buff enough to haul in some firewood and build a big fire, and then we will all be warm.  By “we,” of course, I mean me, and all of my fingers.  And my toes. My toes are also cold, but I don’t see them often, because they are very far away, and usually inside several pairs of socks. I miss my toes.
     Ah.  But we have a gas fireplace.  So, forget about that firewood.  I’ll use my muscles to lift more peanut butter sandwiches, instead.
     On Friday, I didn’t manage to do much working out, but I ate pretty well.  I mentioned this to Hallie, adding my concern that, if I keep doing this, I won’t build any muscle, and all that extra protein will just be converted to fat.  “Well…fat will keep you warm,” Hallie responded, quite correctly.  And, so, I guess we’re good.  Because, the truth is, fat will keep me warm, and I really, really need to stay warm.  Nevertheless, I have always dreamed of being sort of buff.  Warm, and buff.  It sounds kind of dreamy.

     I guess I’ll keep working on the muscle-building thing.  To be perfectly honest, I was already working on that.  Which sort of makes me wonder if I should feel a little bit insulted at the implication that I need to build muscle mass.  Except…well, I really do need to build muscle mass, and I know it.

I guess I needed a New Years Resolution or two, anyway.  Y’all watch: by 2018, I’m gonna be stronger than I’ve ever been.  And warmer, too.

How Bad Is it? ~ by Sam

Last night, my foot went out.  I don’t mean it had a pleasant night out on the town.  It’s done that, with me in tow (if you’ll pardon the pun), but that was not the case last night.  Last night, my foot just sort of ceased to work.  I call this “going out,” as in, “My foot’s gone out again.”  You know, like when your transmission goes out.  This happens in a number of ways.  What I mean by this is that it simply freezes up and refuses to move.  Sometimes, it sort of seizes, and assumes an usually grotesque position before freezing (often folding vertically in a way that feet don’t actually fold, so that my big toe rotates in to a position that is under or over the rest of my foot).  Other times, it just sort of flattens and becomes stiff, like a boot, all the way through the foot and ankle.  In any case, it is useless, and it feels freshly broken.  No, scratch that.  I would say it feels more painful than a break.  It feels… hmmm… It feels like it was broken, and then…I don’t know…something else happened to it.  Like, maybe it caught on fire, and got slammed in a door.  Yeah.  I’m gonna go with that.

But that’s a mouthful; so I just say, “My foot’s gone out.”

It goes out a lot lately.  I think I should buy it some fabulous jewelry.

Anyway,  this is a CRPS thing, and, yeah, it has been happening, so I guess I had better call my excellent Pain Management doctor, because his job is, after all, to help me manage my pain.

But, see…

It’s hard, because I can’t think of myself like that.  As a person who has a Pain Management doctor, and a chronic pain condition that needs to be managed. Coincidentally, just yesterday, Justice was asking me if I considered myself to be disabled, due to fibromyalgia, CRPS (and a host of other health concerns that have cropped up recently, I suspect), and I told her I don’t.  Of course I don’t.  I am able to get around and do what I need to do.  …pretty much…  I might not feel great, but I get by. …most days…  I mean, I had to quit my job, but I am still able to do a lot of things.  …usually…  I am even able to do things I enjoy.  …sometimes…

And then, here we are, on a day like today, when CRPS has brought me, literally, to my knees.  I am not looking for sympathy.  I am not making excuses.  The thing about CRPS, for me ~ where I am with it, anyway ~ is that I have been advised to just keep using my foot as much as possible, no matter how much it hurts.  I just have to keep making myself use it, even when it feels like it’s broken, and on fire, and someone slammed a door on it, because, if I don’t ~ if I let that stop me, and it stops me for a day, and that day turns to 10 days, then a month, then 4 months, then a year…well, then, eventually, I might lose the use of my foot.  And that  would be unacceptable to me.  I think, perhaps, I am writing today to figure out where it is I stand with all of this.  (Again, if you’ll pardon the pun.  There are just far too many foot puns.)

So, last night, when my foot went out, I took my Nortriptyline, like I always do.  I struggled to get my jeans off and pajamas on over my stumpy boot-foot.  I used the ketamine gel that I only use when I really need it, because, frankly, it’s just too expensive to use more often.  I ran through my exercises.  I cussed while doing all of the above, because, frankly, it hurt like a motherfucker (you can consult the  McGill Pain Index to see exactly how much a motherfucker hurts, if you are curious ~ it’s a lot).

(Sorry.  That was rude.  I probably apologized last night for cussing, too, even though Shane was the only one in the room, and he was asleep.)

This morning, I got up and made coffee, and didn’t help much with getting kids ready for school, and drove Kaia to school.  Then I went to the store, because I had to.  I mean, I probably didn’t have to, but there were a few things we needed, so I did it.  At one point, as I was pushing my cart, a man said to me, “Oh, come on now ~ it can’t be that bad,” and I thought, “Fuck you,” but I didn’t say it, and I think he’s kind of lucky I didn’t say it, because, really, just a little bit, fuck him.  I mean, I get it.  He had no idea what I was going through today.  He has no idea what my life is like.  In fact, I have no idea what his life is like.  He might have a terrible time, for all I know.  But, you know what, it is that bad.  Sometimes, it really is that bad, and I guess, this morning, maybe that was evident, in my demeanor.  I know I was limping.  I know I was using my cart for support.  I can assume I was obviously not having a great time, or he would not have commented.  And yes, as a matter of fact, it really was that bad.  I guess, I’m lucky he didn’t ask me to smile.  Or maybe he is.

On the way out of the store, after I had paid, I noticed a woman walking directly behind me with her shopping cart.  “I’m sorry,” I said, as we made our way through the automatic door, “I’m very slow.”

“Oh, that’s okay,” she replied.  “So am I.” After a moment she added.  “At least we have our carts to lean on. I don’t know how I’d make it without that.”

“Yes,” I agreed, “that does help, doesn’t it?”

We walked very slowly to our cars together.

So, I’ve come to the end of this entry, and I haven’t figured out anything ~ except, perhaps, that, sometimes, it’s enough to know that someone else understands.

To Start Anew ~ by Sam

2017 finds us all poised at the breaking dawn of a fresh, new year.  A year full of hope, and promise and possibilities.  The problems, the struggles, the tears, the regrets, the trials, the toils of 2016 and before lay behind us, and what lies ahead is infinite and unknown.  People encourage us to move only forward, to cast off the negative, never looking back; but, like Lot’s wife, we find ourselves compelled to cast that glance aft, and then…

Then what?

Isn’t it our history that informs us?  Isn’t it our past that makes us what we are today?

And so, I offer this advice for the New Year: Don’t attempt to make a brand new start, as people suggest.  That is far too tall an order for anyone, and destined for failure.  Sure, go ahead, move forward.  But don’t just put one foot in front of the other and trudge blindly on.  Move forward informed by the past, strengthened by your experience, hardened in your resolve ~ battle-scarred and imperfectly-perfect, as are we all ~ ready to conquer whatever life happens to throw your way.

In that spirit, I give you my Resolutions for the New Year, in no particular order:

In 2017, I resolve to:

Be Kind.
Listen.
Visit Places.
Make Things.
Plant Things.
Play Music.
Take Care of Myself.
Cook.
Write.
Read.
Dance.
Laugh.
Sing.

I might clean some stuff, too.
Maybe.

I think I can handle that.

Wishing you and yours Peace, Love, Health & Happiness in the New Year and beyond.  With all of those things, how can we possibly go wrong?