Tuesday, July 29, 2014

Taking a Step Back

I got my most recent lab results back and my kidney function continues a (slow) downward descent. 18 months ago my GFR was 45 (CKD 3A), now it’s 38 (CKD 3B). That’s an 11% drop, enough that it scares me.

I know what I was doing to take care of myself 18 months ago. I was watching what I ate and managing stress in my life. Today? Not so much. There are no excuses anymore.

The past couple months have made me realize that I push myself too hard. And the numbers don’t lie because they’re reporting the same thing. I’d love to say, “Yes! I’m back to 90% of normal!” but actually if I’m being honest that number is 70%.

Maybe. 
On a good day.

The reality is that there is no getting back to where I was before. That person doesn’t even exist anymore. This is my new normal. It’s incredibly frustrating to not be able to perform at the same level I used to, and it’s hard to be in acceptance about it. But then I remember most people who had what I did don’t get half of the opportunities I do, let alone live independently. As someone reminded me recently:



I have to take a step back. I want to do so many things – go out and play, go to dinner with friends, keep myself busy every night, be active in hobbies, and be available to participate in the lives and recovery of others – but the reality is that I need to take care of myself and that just isn’t happening when I am prioritizing everything and everyone else above myself.

I already say NO a lot. And I’m going to have to say NO a hell of a lot more.

I was in Cameron Park until 6:30pm a few Fridays back and someone said, “Oh good! That means you’re free after that!” What the actual fuck? That pissed me off royally. Like I keep saying, even though I look healthy on the outside managing my health is a full time job, people truly have no idea. I’m not even kidding. This is why I don’t have pets or kids – I literally don’t have the bandwidth for either of them because I can barely handle myself.

I don’t want to die young. I don’t want to be sick. But in order for me to live MY life I have to take care of MYSELF, even when other people are telling me I have to do things for them/others. Obligation feels really bad to me – it’s probably one of my top 5 worst feelings. I avoid it like the plague. I’m overwhelmed and beyond mentally, physically, and spiritually exhausted. I’m mad. I feel vulnerable and raw and fragile.

Out of the pan and into the fire…


Sunday, July 20, 2014

That moment

It rained for about half and hour this afternoon. While nothing more than a novelty due to our ongoing severe drought, it was lovely for a little bit.

I had the urge to pull out my camera. It's even charged, which is kind of a surprise. It seems every time I go to pull it out the battery is dead.

I got some fun pictures while it was raining.

Rain drops! 
The oaks

This is *my* backyard with the towering oaks

I picked up my camera today ♥

Rain drops and jacked up toe nails

The moment I'm referencing is the decision to pick up my camera. Today is really the first honest time I've picked it up and NOT felt any grief or sadness or energy around it. I enjoyed feeling it in my hands, snapping pictures as the rain fell. I still know my camera, it's settings, and photography principles inside out, the memory hasn't left me. I even missed my Flickr account for a minute (although Yahoo has completely ruined the greatness that was Flickr a few years back, which is why I cancelled my account).

My love of gardening has returned. I sit and read my gardening books, getting ideas for my 'someday' home. I have held out hope for the past 4+ years that photography will be the same way, but it has been slow to return.

I signed up for an REI outdoor photography class in August* which just happens to be a few minutes from where I work in Auburn, and I'm really looking forward to it. Wish me luck.

Update - The class is on 8/22, link here.

Sunday, July 13, 2014

Sentimental

I have been accused of being unsentimental. I eloped because I didn't care about having a wedding. I wanted to throw away my high school yearbooks until my Mom said she'd take them if I didn't want them, and that made me feel bad, so they sit in storage. Pomp and circumstance just doesn't run in my blood. We all die and eventually nobody remembers us, that's just the way it works.

Every night before I go to bed, I do the following after my nightly routine of brushing my teeth, etc:
I put a pair of sneakers by my bed.
I put a lightweight pullover next to the sneakers.
I put my laptop and charger in a case with my iPad.
I put that case next to my backpacking backpack, masquerading as my 72 hour kit.

If I were to need to evacuate in a moment's notice, I'd be ready with all the things I needed.

I've done this as long as I can remember in some form or another, and as you can see, there's not much sentimentality to it. Food, clothes, internet - my hierarchy of needs.

Getting ready for July 4th is always an exercise in anxiety for me. This year I had planned to take all of the things listed above and put them in my offsite storage unit for the weekend, just in case the dry "greenbelt" behind me caught fire and I had to evacuate. (It's worth noting that one of the buildings in my complex burnt down due to fireworks a couple years back). This July 4th, I added one more thing to the list above: a small box of pictures I've collected over the years.

Honestly, this kind of shocked me. I'm not sentimental so why all of a sudden am I interested in saving pictures? I had the chance to go through them with my Mom recently, as she was cleaning out her garage and found loads of pictures from me and my sister's childhood. We had a blast looking through both sets of pictures. I thought I knew myself as a child, but this was a new experience.

Like the one of me hiking in Glacier National Park when I was 12. This was the most spiritual experience of my life to date, and the first one I can really remember. I've talked about it forever, and now I have a picture of that very trip.

Or my high school graduation pictures where my eyes are the deepest blue I've ever seen because I was happy and *possibly* falling in love with someone. So much promise.



Being able to see my childhood through a new lens casts clarity on my life as an adult. And while I may not be sentimental, I now know where that box of pictures is each night when I head to bed, just in case...

Saturday, July 12, 2014

Heaven

I have to admit that not having a real garden has been weighing heavy on my heart this past year. The drumming has gotten louder and louder the past few months.

g a r d e n
garden
Garden
GARDEN
GARDEN!

When I bought a peach from the grocery store and it tasted like shit and was hard as a rock, I was reminded of the peach trees I've planted at different houses where I no longer live and frankly, it pissed me off. Royally.

So why do I live in an apartment, you ask? To save money. Rent is more than I care to pay in this area. Plus it seems like a waste for me to rent a house. I can't buy a house because I am still in credit/foreclosure purgatory. Even if I could, I couldn't afford anything where I want to live on my salary alone, and location is not a sacrifice I am willing to make.

I went house shopping in Auburn with a good friend the other night and she has a budget that is slightly higher than mine would be. I wasn't impressed with what was out there, but then again I left Auburn thinking I'd probably not live there again. My friend is a single mom with two kids and a house makes perfect sense for her. A single woman who is out and about all the time - my apartment functions more like a locker with a bed. THAT is why I am here. And don't get me wrong, I really do like my apartment, I just wish I had a garden.

Speaking of garden.

My Intuition is funny. One day at work I had the urge to Google "placer county community gardens" and the first result that popped up was our local food bank. Curiously, I clicked on the link and found that they have volunteers that garden and harvest at local ranches/orchards/gardens. I couldn't believe my luck! I put in my name and heard back from them a while later saying they would be thrilled to have me as a volunteer. They gave me some options and low and behold, there was an orchard not five minutes from my apartment.

This morning I got up early and made sure to eat breakfast since I knew I'd be working off those calories in no time (eating enough is my Achilles heel), and hightailed it over to the orchard, following their directions on where to meet the volunteer coordinator. I came around the corner (there were LARGE piles of compost and horse manure) to this:



It was if I died and went to heaven.

I met the coordinator who is a lovely woman from the local Rotary club who oversees the garden. It was about a quarter acre (half maybe?) of vegetables, tucked into the back of a 45-acre orchard. She told me that the farm is 100% organic, and has cut its water use 60% during the drought, watering his trees only once a week, with no ill effect due to his organic practices.The farmer has said that he plans on using far less water even after the drought ends because of how well he's able to dial things in with less of it.

Today I picked beans and weeded. It was about 70F with a light breeze. Everything lined up just right - one of those perfect will-always-remember moments in my life, and I was able to thank my Intuition for leading me here. It was a wonderful day to be in the garden. I was pretty spent after a couple hours of stooping to pick beans off bushes, so I was glad it was short. I have noticed my knees are older than my age (another fun side effect of my illness) and squatting/standing up repeatedly messes with my blood pressure, so I was grateful to rake up the weeds I pulled in a standing position.

They also have volunteers on Wednesday evenings, and if I'm feeling saucy I might participate then too. But now I know what I'm doing on Saturday mornings going forward! I asked if this is a year round gig, and if the water situation gets better they will be doing a winter garden. Pinch me, seriously.

I'm glad to have found one more thing to help me get out of my own head and try new things this year. I took up golf, have found a place to volunteer (and thanks to the Placer Food Bank for being super organized!), and am breaking down lots of old ideas in my life, trying new things all the time. Creating the life of my dreams has been an experience beyond my wildest imagination.


More soon.

Friday, June 27, 2014

833

People who don't know me or what I've been through only see the outside.

I look healthy.
I take care of my body and am in good shape.
I have good skin.
My hair is boss and I keep it tight (haha!).

I try to keep up with other people and do fun things but sometimes it's hard for me to acknowledge my limitations. And because I look healthy, other people don't believe me when I tell them I need to rest and take care of myself. They may think my radical self-care is selfish and bizarre given that I am single and childless. They have no idea what I've been through, and it's hard to get people to understand that just because I look like a healthy, normal adult doesn't mean it isn't a full time struggle job to maintain my health.


  • What you don't see is the 2-4 medical appointments I go to a month (I was in 2 separate medical professional's offices today, plus a lab for bloodwork).
  • How I meticulously watch what I eat and monitor my intake of certain nutrients/foods (sodium, vitamins B,C,D, iron).
  • You might not know that I had to learn how to walk again, using a wheelchair and a walker.
  • Or that I lean my hips against sinks/counters to stabilize myself.
  • You've probably never noticed that I lift my legs manually when I'm sitting, crossing and uncrossing them with my hands.
  • Or that I have to lift my legs when I get into my truck sometimes, especially if I'm tired.
  • You might not know that the reason I have short hair is because it all fell out, or that I keep it that way is because my head is crazy hot at all times and I get migraines if my hair is long.
  • You can't see the stage 3B kidney disease, hearing loss, memory loss/troubles or how I manage these on a day-to-day basis.
  • You don't see the nerve damage throughout my body but especially how it affects my fingers and feet. Or how my skin feels itchy or like things are crawling on it all the time.
  • You may not know that I am no longer able to metabolize certain foods and have to avoid all dairy, tomatoes, peppers, mushroom, and cauliflower (this list is growing).


It is a lot of work to keep up with my health. I hide it well and people who didn't walk through Hell with me (like my parents and best friend) don't understand where I was and what I've been through. They can't look at my healthy-looking body today and even begin to imagine that I was in a coma, hooked up to multiple IV trees, had a machine breathing for me, swelled to 2x my normal body size (200+ lbs) had to learn to walk again, or any of that stuff. Because I mostly did that work alone with medical help and the aforementioned family and best friend.




Just because someone looks healthy doesn't mean you have ANY idea what they deal with.

I am part of an elite club of 833 people in the US who had meningococcal disease (bacterial meningitis) in 2010. 79 of them died. I was lucky enough to live, but my presence and this body is a constant reminder of my brush with death. You may not see my trach scar across my neck but I see it every time I look in the mirror. I have grown to see it and all of my other physical scars as symbols of triumph, determination, and sheer stubborn will. Tenacity. This is me. This is my life. This is me surviving and kicking ass.



I often feel like this story gets old because some folks who read my blog have been around a while and watched me almost lose my life and recover from it. I shy away from telling this story because it can get redundant or obnoxious to hear it over and over. But as the time passes and more people filter into my life and have no idea what I survived, the need to tell it again comes up. People ask why I'm struggling weeks after a backpacking trip and this is why. On the outside I look healthy, on the inside my health is incredibly vulnerable. I do everything I can to protect it.



Meningococcal disease isn't just an acute illness, it's a life sentence.
And as hard as it is sometimes, I wouldn't trade my life for anything.



Wednesday, June 25, 2014

Speaking of tired

I put OJ away in the cupboard two days ago and just found it when I went to get a cup.

Heaven help me.