Not Dead Yet

Wow, I've been terrible about keeping up with posting. Ahem.

In my fortune cookie today

I've spent the last few weeks continuing to recover from moving. My arthritis has been problematic, but I've managed to putter around and do a few chores every day and slowly start low-grade exercise again.  Swelling in my hands and feet with too much exertion (like a few hours on my feet) and/or high temperatures has been annoying.

Tom has been up to Chicago the past few weekends and this weekend I had the car. SCORE! I completely lost my mind and had a 4-5 hour long shopping marathon with, um, pretty much no breaks. This was epically stupid. "Post-exertional malaise" is really not a sufficient description. And I managed to get so tired that I had trouble sleeping, which is among the stupidest mind-body quirks I can think of.

I did wind up with some comfy pants and leggings to go with some other new-ish clothes from eBay. My weight is still creeping up courtesy of the nortriptyline. I'm still within the healthy BMI range, but getting uncomfortably close to overweight. I've been logging meals and activity with MyFitnessPal, which does seem to help a little bit. It's not quite clear how much of the weight and bloating is weird autoimmune related fluid build up and how much is actual weight-weight. Grumble.

I had never really had to pay attention to my weight until the past year or two aside from making sure it didn't drop too much in the field on a few occasions. So this is an entirely new, weird thing trying to figure out what size I am now, what is flattering on this very new and different body, and realizing just how socialized I am/was to "skinny=good/beautiful." And stretch marks. What the hell?

Bonus fun, of course, is the uncertainty about exercise and Chronic Fatigue Syndrome/Myalgic Encephalomyelitis. Some camps suggest Graded Exercise Therapy, often in combination with Cognitive Behavioral Therapy is a useful intervention to increase general function. Others suggest that even graded exercise therapy can increase oxidative stress and in other ways actually be counterproductive or even dangerous for people with CFS/ME.  I have found in general that aerobic exercise of any kind tends to be far, far more unpleasant with longer lasting after-effects than more gentle stretching, like yoga or very low level aerobic exercise like walking.

We still have not received our insurance information so I have yet to see any new doctors. I'm dreading it, actually. I hate having to recount the decline of my health and all the details around it for new people. I hate trying to figure out if a doctor is being patronizing or has decided I'm just "nuts." I hate not knowing where the line between self-advocacy and rudeness is.

In the meantime, I have been working through A Mindfulness-Based Stress Reduction Workbook I have it as a Kindle book, but it seems to no longer be available in that format. I'm enjoying it so far and finding that it is helping me recognize when I've tightened up or gotten anxious and pause to relax. It is still a challenge to do the daily meditations. I still feel obscurely guilty for taking 15 minutes to meditate when there are boxes to be unpacked or dishes to be washed or, or, or... It is at least keeping me on a fairly even path until I can begin seeing a therapist regularly again.

I also have done no crafting. For months. I can't decide on a project, I don't pick up things already started. I can't decide on a new thing to start. Hoping to remedy that this week.

Better news - some of my experiments with supplements do seem to be helping a little bit. I ran out of CoQ10 this week and seemed to feel a bit less with it until more arrived. It often seems that various treatments help in increments best detected when the treatment is skipped or removed.

We've made some progress in unpacking.

Well, some of us. Others have been grumpily hogging the heating pad.

Fuzzy Bandito News Flash

Image via Wikipedia

Come on, you knew it was just a matter of time before I posted this.

Alert:
A group of raccoons in the area destroyed some papyrus plants and a pepper plant.

Clearly this means they are making paper on which to make plans for world domination. While enjoying some salsa.

Watch for further updates. And raccoons with pencils.

Related articles

• Fuzzy Banditos (shovelingferret.blogspot.com)

Fuzzy Banditos

Image via Wikipedia

The perfect storm of suburban vermin, Grabby and Stinky.

I heard clinking on the porch last night. Flipped the light on and peeked through the blinds to see several raccoons very carefully tipping over the planters to see if there was anything good in them. They didn't break anything. After a while they got bored and annoyed with the light and left, probably to go dumpster diving. Only one seemed to suspect they were being spied upon and kept staring at the glass like "I know you're there."

Fortunately, we don't let Oreo run around alone outside, so that shouldn't be an issue.

Tom put some of the plants in hanging planters today. Do raccoons do acrobatics? And if so, do they wear leotards and capes or should I make some for them?

I am guessing they're smart enough not to eat the peppers from his pepper plant but if I do see a raccoon on the patio frantically swiping at his tongue I'll try to get photos.

In other news, I had insomnia like whoa bad and didn't get to sleep until around 7 this morning and then slept until around 3. I woke up to a shaved dog. He'd gotten into a burr patch and Tom wisely decided shaving was better than trying to pick out each little burr. Those things hurt like hell and I think I have a mild allergic reaction to them. Poor Oreo.

He looks very handsome now, though.

The sliding glass door is becoming a source of random amusement. We've had the raccoons. People cut through between the patio and the patch of woods. Today a Boston Terrier and his person cut through there. Oreo went nuts and they were nose-to-nose through the glass. Oreo is most disgruntled that we did not react appropriately to OMG HE COULD COME IN HERE!!!


We've been mostly trapped in the apartment complex the past few days. Cruising the Coast is going on, which is awesome, except that Highway 90 is the only way in or out of our apartment complex and it is being heavily cruised. Tom biked to WalMart to get me more allergy meds and some food because he is made of awesome.

Two unrelated but awesome things

Image by Stephen Rees via Flickr
Edit: Formatting on the quotes got super weird. Trying to fix that:

The first is this amazing article by Toni Bernhard, author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (also amazing, by the way). Toni has a gift for explaining the common lived experience of people with chronic illness and their caretakers in a way that is clear, empathetic, and elegant without drifting too far into the "oh woe is me" or the "I will tough everything out and pretend everything is just fine." Definitely worth the read.
A few quotes in particular resonated with me:

Yes, it's okay to get sick or be in acute pain due to an injury or a surgical procedure, but then we're supposed to get better. Everyone expected that of me and I expected that of myself. For years, I felt embarrassed that I wasn't living up to the cultural norm

And:

Many of us believe that we've let our family and friends down.

And:

The dilemma of how to "present" to the world. Should we spruce ourselves up and risk people erroneously thinking we can participate fully in whatever they're doing?  

Also:

We're often misjudged by others if they see us looking nice or being active in any way. Healthy people tend to assume it's all or nothing: we're either sick or we're not; we're either in pain or we're not. And so, if they see us doing anything "normal," they assume we're 100% well. This has happened to me many times. Someone will see me at an espresso place with a friend and assume I've recovered, unaware that I came from the bed and will collapse on it after the visit. People aren't deliberately being insensitive. They just don't know.

And:

Caregivers face their own set of stressors. They must live with the frustration of not being able to make their loved ones better. They're suddenly thrown into the role of patient advocate in the medical system, a role for which they have no training or expertise. They often have to take over the running of the household. Caregivers see us at our worst, as we put on a good show for others (for me, this means running on adrenaline), only to collapse when we're in the privacy of our own homes or apartments.

On a lighter note, I enjoy watching jackasses get their comeuppance and boy has that happened with a vengeance with The Bloggess and a particularly clueless PR company (not the one that tried to recruit me to write for a "Mommy Blog" who had obviously not read much of anything here).
I sort of regret not being in Chicago anymore as I would have given serious consideration to dressing up like Beyonce the metal chicken and going to the PR company's offices downtown to tell them "Knock, knock, motherfuckers." Pretty sure that would have been the best bus ride EVAR.

Good Day

This week has been one long migraine, which hasn't been so wonderful. But, Twitter friends helped me figure out that it might have been forgetting my magnesium supplements that was at least contributing to the problem. Social networking and asynchronous communication at its finest.

Part of why the migraine lasted so long was also that I was being very, very stingy with my clonazapam because I was running low. We still don't have our insurance cards or account numbers so I'd have to fill things out of pocket. That wouldn't have been an issue except that the clonazapam script was written on the same sheet as two other meds, one of which would have cost $536 out of pocket for a 30-day supply. Apparently in MS, it's standard practice to fill all the meds on a sheet, especially if it's from a hospital (never mind that it was an outpatient clinic, the sheet from UofC says "hospital." So I asked if they could please, please let me just fill one and come back for the others when I have my insurance info. The pharmacy assistant at Walgreen's was fabulous and called around to see if she could fill it. Fortunately they could, because I was not looking forward to either going without my clonazapam or paying for everything and then trying file an insurance claim. We are covered and have been since Tom's first day of work, we just don't have proof of coverage. Bleh.

Anyway, getting the script helped a whole lot.

I'm never getting that arm pillow back.

Yesterday our new washer and dryer arrived. Oreo sounded much more ferocious than he actually is, because the delivery guy was standing well back from the door when I opened it. I had Oreo tucked under one arm and the guy peeked around me and asked if he was really the only dog.


I managed to drive over to fill out my HR paperwork to teach in the spring. And I ordered some evaluation copies of a few potential textbooks.

Today the migraine is almost gone. I've been doing laundry. And I went for a swim, which wore me out, but helped loosen up all the super tight muscles in my lower back (from scoliosis) and neck (from migraines). I only have a few more weeks to enjoy the pool before it closes, so I'm hoping the weather will stay warm enough. It seems to have temporarily helped with the swelling in my feet and ankles too.

For now, Oreo and I are sacked out on on the couch contemplating a nap.

Moving on Up

So, the move is complete. In that all our junk is in the new apartment.

Also, we have an ice maker:

Two Roman tubs:

And this is the view from the patio and the bedroom windows:

Tom's parents bought us a new mattress in addition to helping us move in and his sister and brother-in-law and niece helping with the move and passing on a queen bed frame for the guest bedroom.

New mattresses are huge. Our bed was already high. It hits just under my boobs now and I'm 5'6 or 5'7 depending on how scolio'd my spine is on a given day.

Oreo on the mattresses before we put them on the bed frame

We got new driver's licenses. I think all the weight Tom lost from the last time he had a MS license I gained since the last time I had one.

Friday while I was in the bathroom I got another call about teaching. Apparently they needed to know right that minute if I could teach in the spring. So I said "um, yeah." I have a job with virtually no effort on my part to acquire it. This is still blowing my mind.

Yesterday we bought a washer and dryer to be delivered on Wednesday. o.O Single largest expenditure we've ever made. There will be photos. Possibly video.

Today I drove Tom to work and drove home all by myself for the first time since 2008. It went very smoothly. Then I spent the rest of the day waiting for the gas company tech to show up, which still hasn't happened. 

And I unpacked exactly nothing. My excuse is that we need bookcases before we can unpack most of the boxes which are full of books.

Current view of the living room.