I'm trying to find silver linings 6.3.19

I'm trying to find silver linings 6.3.19

My mom just called. She had to take my dad into the ER because his ankle was super swollen. Because he has those clots sitting in his leg - that could break off any time and cause another stroke or heart attack - they had him come in.

His primary doctor wanted him to go to the hospital system that fucked this up and caused a lot of these issues. My mom didn’t want to take him there. I assured her that the more recent hospital he was in was the best bet. My poor mom. She looks like a zombie most days.

It’s hard to watch.

They didn’t really understand all this time what a nightmare it is to be be disabled, rely on medical supplies and home health. Even though they saw me go through it! I know that denial is their coping mechanism for a lot of this. But still.

Now, she’s got a stack of mail sitting there.

Read More

I heart being productive 6.2.19

I heart being productive 6.2.19

During the summer, when I was a kid, I’d create all kinds of activities for my younger siblings and cousins. There was my younger brother and sister, my four cousins who lived across the street and THEIR three cousins who lived kitty corner to both of us. The youngest were very small for much of my childhood, but I would still often be in charge of at least five or so kids.

I’d create haunted houses (wet cotton balls were supposed to be eyeballs - not bad for a 70s kid), camps, waterslide park (in the backyard), library (for years, every book in the house had fake library slots in the front), and my FAVORITE of ALL TIMES: SCHOOL.

I hosted “school” for my poor little kids the MOST often.

To this day, my cousin Danny, STILL gives me shit about making him do math in the summer time.

He’s done

Read More

Edith is missing my dad 5.25.19

Edith is missing my dad 5.25.19

Let me tell you about Edith.

I got this plant at a nursery when I was 20 years old. I was trying to have a “grown up” home (hahahahahaaaaa whatever that means!). I’ve always been drawn to plants even though I still have not fulfilled my lifelong dream of having a garden.

She stayed with me through a lot of changes in my twenties. When I decided to move to New York City, I moved her to my parents where she has stayed ever since.

My dad has a whole system for watering her. As we often do, he and I developed an unspoken agreement that he would water her and care for her when I was gone. When I’d come home to visit, I’d trim her leaves, add more soil and sometimes give her some plant food.

Our plan must have worked because she is 28 years old this year!

Ever since his health worsened, she hasn’t been looking so good. I’ve been trying to water her regularly, but her leaves keep turning brown. Last night, even though her soil was moist, her leaves were drooping and facing one direction. They were all leaning toward the kitchen and away from the window.

I think she misses my dad.

It’s been a really rough week.

Read More

It was a magical weekend 5.20.19

It was a magical weekend 5.20.19

did it! I had a fantastic weekend and felt ok physically and mentally!

This is a HUGE relief. If I couldn’t do a short road trip in my area, I was afraid my world would shrink even more than it already has.

Just thinking about that terrifies. I had a lot of safety precautions in place, just in case.

But all went well.

On the drive home, I was actually sad to be heading back. I didn’t care that I was sitting in traffic in Tacoma! That’s how happy I was to be out of the cocoon.

Out of respect for the community that has graciously welcomed me into their fold, I won’t be sharing any specific details about what went on during the weekend.

What I can share is that it was an incredibly healing experience. This photo was taken after I did an ancient ritual. My entire outfit is soaked in sweat here! And I’m very pale, but I did remarkably well given the situation. (Women wear skirts so I borrowed my friend’s skirt that is too short for her now!)

Let’s see if I can share a little bit without disclosing too much.

In 2017, I wrote a note for my 2018 goals which were: go to an improv class (check!), find a spiritual community that focuses on health (OMG CHECK CHECK CHECK this past weekend!), and figure out how to travel, even close by.

Read More

I survived outside my cocoon! 5.19.19

I survived outside my cocoon! 5.19.19

I wish I could find better words to describe what it’s like to go from able-bodied to disabled in a relatively short amount of time - and at mid-life.

First, let me explain a few things. I’ve had issues with my GI track since I was 17 years old. I’ve had to be careful about what I eat for several decades. Even during my “healthy” years, I still didn’t eat a lot of things. I’ve never tolerated dairy and wheat very well - though a little here and there is ok. I can tolerate sheep and goat milk products much better than cow (it has to do with the size of the animals but that nutrition explanation is for another day).

However, when it comes to my physical strength - and not the functioning of my organs - I’ve been really, really lucky. I’m very chill about when and how I share this kind of information. I’m the last generation that believes in being humble! I used to read Miss Manners for FUN.

Plus, I’ve spent enough time about hardcore athletes droning on and on about their workouts and whatever else, that I’ve made a point to keep my athletic experiences mostly to myself.

But as I grow my online presence (this is just the beginning - even though I am feeling the urge to share a post on Facebook to clarify that I’ve never wanted this job - being out in the public SO much about so many personal things is not exactly a dream come true - and to fight evil? That may have sounded appealing during my healthier years, but now I’m fucking tired and older. And the whole thing sounds exhausting. I want to do what my peers are doing! But alas, I took the job. So now I will do it. And do it the best I possibly can), I will be sharing more exercises I’ve developed in order to improve poor motility function, and prevent injury.

Read More

I am very tired today 5.15.19

I am very tired today 5.15.19

I’m going to have to invent better blog titles.

I feel like I’ve been dragged under a bus and then rolled down a long hill and then landed on concrete.

One friend was asking me to describe what the fatigue is like. The best I could come up with is that feeling you get when you know the flu is coming. Or, the feeling when the flu is gone but you still feel like you can’t do much. The second one is probably more accurate. It’s not full-on flu, it’s that heavy feeling where everything sounds hard. Basic tasks sound near impossible.

I know I’ve been ranting in here lately. I don’t want this to be all about my rants. I really would like to get to some gorgeous writing! Share some more life stories! Write some reviews on products! Organize my nutrition information!

So many thing!

Today, I will just try to get through the day. No matter how dark my curtains are, I can’t seem to sleep well in the bright mornings.

I’m trying to write coherent thoughts right now because

Read More

Fragile bodies are very fragile 5.13.19

Fragile bodies are very fragile 5.13.19

I always have so many thoughts in my head while I’m laying in bed. I think of at least five different possible blog posts.

But when I finally open my computer, they leave my brain. Of course. Fucking writer’s angst.

I haven’t felt like writing in here lately. I like forcing myself to do it. I had a pretty decent piece flow out of me late last night when I was about to fall asleep. Like good enough to submit somewhere - which is saying a lot since my writing in here has been absolutely terrible.

The fact that I’m willing to publicly share my shit writing says a lot about how much I’ve shifted in recent years. I used to be so hard on myself about my writing! I still am, now I’m also accepting that part of being a writer is writing absolute garbage in order to get to the shiny diamonds.

When I started my business in 2008, I would torture myself writing email newsletters. I’d spend DAYS writing and editing them. I’d send them to my sister and my mom to make sure they weren’t absolute shit.

Now!?!? I post so many grammatical mistakes on my Instagram posts and in here! Lord. The old me is mortified. But the new me is like whatever man. Whatever gets me through the day and keeps my mind from breaking for good.

The mental health piece is such a big one for me these days.

Read More

I hate feeling so overwhelmed 5.11.19

I hate feeling so overwhelmed 5.11.19

I don’t feeling writing here today.

I can’t stop sleeping, which is exactly what I need. I took a full Xanax last night which I almost never do. But I’m so desperate for a long, heavy sleep, I did it. It makes me tired the whole next day which I opted for so that I’d keep myself “down” today.

I have such a hyper personality that it’s challenging for me to hold myself back. I want to do SO many things before I die! Which I think we can keep at bay for awhile longer, now that I have my calorie intake steady again and better IV nutrition on the way. And juicing! I think my system has slowly allowed me to incorporate in.

I’m still very aware that my time on Earth is likely going to be short. There’s so much I want to do! So many words that want to be said!

It’s important that I reign in my urge to get shit done while on the fluticasone drug that is a bit of an upper. It’s not in the same class of steroids as prednisone which REALLY jacks you up. I remember when my uncle was on prednisone when he was going through chemo many years ago. My aunt would find him working in the garage at all hours of the night. I don’t remember being super hyper when I was on it but I’m sure I was.

Another friend said she enjoyed

Read More

I can't wait to decorate 5.10.19

I can't wait to decorate 5.10.19

I gave myself 3 liters of fluids yesterday up until about 3/4am.

I’m giving myself one right now.

I’m dehydrating very, very quickly these days.

AND I started the fluticasone on Monday.

I’m trying not to panic. My nurses say they have patients that get 3-4 bags per day so I know you can live like that.

But what the FUUUUUUCCCCKKKKK is happening to me? Why are so many things worsening? How can I stop them from worsening better? Is it even possible to improve hydration and gut issues? Am I dreaming?

Or, do I rely on my old belief system that the body WANTS to heal, and given the right conditions and interventions, it WILL heal.

If only they hadn’t gutted me so badly. Geography and scar tissue are different beasts than inflammation or auto-immune problems. Nerve damage…

Ok, I’m not going down that road today!!

Can you feel how frenetic I was in my post yesterday? That’s partly the medication. Like I need to be jacked up at ALL. I’ve always been drawn to depressants, never stimulants. Caffeine and cocaine have never had any appeal to me.

Mellow me out, man!

(Can you tell I started my weekend already?)

OMG this week was SO bananas!

Read More

This was not a fun day 5.8.19

This was not a fun day  5.8.19

The reason I wasn’t able to write yesterday (I posted something there just now to cover that date) is because the day was absolutely bananas. When it didn’t need to be.

I drove myself to my IV vitamin appointment which already irritates me. It’s a half hour drive there and an hour home because of traffic - now if the medical system allowed for me to get these AT HOME, it would be a lot cheaper and a LOT easier than commuting for a 45 minute IV bag I could easily administer myself.

There is magnesium in the bag which makes me a bit sleepy. I do my best to rest while I’m there so I’ll have cognitive focus to do the drive home.

Lately, I’ve been bringing chicken broth, tea with honey and nut milk, and my protein drink. The Vitamin C can lower blood sugar, so I’ve had to be very careful about maintaining a constant flow of salty or sugary fluids. I never used to get low blood sugar before all of this. I could go without meals, no problem.

Not anymore!

So at the end of my appointment, one of the ND doctors flushes my PICC line.

Read More

Fucking fake cheesecake 5.4.19

Fucking fake cheesecake 5.4.19

I had a lot of dreams last night. I used to always have a lot of dreams. But now I take so many herbal concoctions in order to sleep, I rarely remember if I’ve had them, let alone the details.

I haven’t talked about all my sleeping problems. That’s for another day.

One of the dreams I had last night, I was dying my hair and it was long again. It was should length. I was annoyed the entire time because I couldn’t get they dye to evenly distribute in my hair (I’ve been dying and cutting my own hair for years - I would have become a hair stylist in another life).

I remember thinking: ugh I wish I had short hair again, this is such a pain in the ass!

People have been asking me to help interpret their dreams for years. I love it. And NO I don’t go by the goofy interpretations you can find online. I talk about how the dream is significant in the person’s life.

I would guess this has to do with my unconscious toying with the idea of going back to some of my old ways, or at least revisiting the old me.

Hair represents the feminine in so many ways. It’s interesting because

Read More

I don't like goat milk 5.3.19

I don't like goat milk 5.3.19

I’m working so hard on figuring out what I can eat and what I can’t eat. That’s why it’s especially irritating when a doctor I barely know acts so suspicious about whether I’m trying new foods.

OF COURSE I AM. Geezus.

I got a little overzealous last night and downed some carrot juice and devoured half of this non-dairy cheesecake (it’s not that big, but still, for me I must do small quantities slowly for pretty much anything) from Whole Foods that I bought when I picked up the goat milk.

Today, I’m paying for it. I don’t know which one is causing the trouble. Maybe neither. Maybe both.

This is what happens when I get a little cocky - or I’m just starving - and the pain hasn’t been so bad. I like the cheesecake (well, like might be a strong word) but I like how it makes me feel like I ATE SOMETHING. Liquids just don’t cut it! And three eggs is all right…I don’t think there is going to be any eggs today, unfortunately.

It’s astounding to me what the medical world requires in order for me to get more nutrients via my IV. It would be so helpful - and way less painful - if I could get more through my blood rather than forcing my gut to try and absorb things that may or may not be aggravating it. Nope. They act like I’m asking for a morphine drip. While launching into outer space.

Pain is so strange - and for the record, I have really high pain tolerance, always have, just for fun I’d play soccer in high school without shin guards and now…? - when I’m not in pain, I feel like I can be productive! Catch up on computer work!

Read More

I had lame doctor appointment 5.1.19

I had lame doctor appointment 5.1.19

I love when patients help other patients.

I remember going to a nutrition talk when I was around 19 years old after living with the inflammatory bowel disease for around two years. I can still see the speaker in my mind’s eye - how does long-term memory work? I’m so fascinated with neurology.

She was very young and told us to drink Ensure who had clearly sponsored the event. This must have been around 1991, before the Internet. So the room was PACKED with people with IBD and their loved ones. As people started asking questions, the rookie speaker looked visibly unprepared for the onslaught of nutrition questions.

After a few awkward minutes, other people in the room started answering each other’s questions. I was so young and the experience was so profound that it seared in my memory.

Hmmmm…it’s often the GI patients that know more than the practitioners.

Fast forward to this post I shared above. I’ve never tried having them

Read More

Do I go to Boston? 4.22.19

Do I go to Boston? 4.22.19

I wondered what I was up to a year ago and found this photo in my phone. It’s from Earth Day 2018! I can’t believe that was only one year ago.

I can’t help but wonder if I’ll be around in another year. Or, if I am, what my health will look like.

There is this low-level terror that I’ve been living with for so long - it’s hard to convey in words. I can smile and laugh, look put together, but underneath, I’m constantly on edge. As I’ve mentioned before, I have a constant monologue running in my head about my health.

Should I give myself another IV bag now? Or one later? Can I get away with eggs today? Should I email that doctor again or wait? Is the trip to Boston too much at this time? Can I make it if I’m still not on TPN at that time? Will the trip be worth it? Will it be too hot there? Should I start bringing men to my doctor appointments or will they still not listen? Should I try for Stanford hospital first since it’s nearby? Should I keep trying new GI docs here? What was that pain just now? Why can’t I get to an MD who will help me? Is this everywhere or is it especially bad here in Seattle? How sick will they let me get before intervening?

Read More

My PICC line is annoying 4.20.19

My PICC line is annoying 4.20.19

Some days I don’t feel like writing in here.

Today is one of them.

But I like the challenge of writing every day and I think my writing has gotten a tiny bit tighter since the first few weeks I started here. It’s been pretty bad so that’s not saying much! I need more time to edit them - but with my health the way it is, I’m not sure I have the bandwidth for a lot of necessary editing. I can’t care about that. It feels so good though to share more of my story in a place that will allow me to live on no matter what happens to me!

The other part of my story from Thursday night is that my PICC line bandage popped open right before I left for the ballet.

Since this is it’s own post, I chose not to include it in yesterday’s story.

Every day, there’s so much going on! My head is spinning. My dad is so weak right now - it’s so hard to see him like this but that again, deserves it’s own post. I’m still processing everything that is happening with him.

Back to the bandage.

A PICC line

Read More

I went to the ballet! 4.19.19

I went to the ballet! 4.19.19

OMG I had the best night!

Awhile back, I posted on Facebook that I was looking for ballet classes for adults. I can’t do jack shit musically but I can dance and I love it. LOVE it. In fact, I get so bored with my “Movement Routine” that I do to digest a few eggs that I’ve added more than just modern dance to it. (Imagine having to do several hours of movement JUST to digest one meal, that’s my life.) I like twirling around like a ballerina to mix things up.

Am I any good? Meh. I wouldn’t make a complete embarrassment out of myself but I’m certainly not gifted at it. There are so few opportunities for me to ENJOY this body, that even if I make an ass out of myself dancing around the house (sorry neighbors), I do not CARE. I’ve never been this limber in my life which makes it fun.

ANYWAY, back to my fun night. An old friend saw my post about looking for ballet classes - which are probably a pipe dream at this point, I can’t get through my improv class without

Read More

Am I still a good friend? 4.13.19

Am I still a good friend? 4.13.19

I worry I’m not a good friend anymore. It’s something I’ve always prided myself on. Being a stalwart companion. Loyal to a fault (found out later, this is a hallmark of codependency - staying in situations that are harmful for too long but that’s not what this post is about!). I didn’t pair off, so my friendships have always meant the world to me. I ADORE MY FRIENDS. They are my family.

I want to treat them so well!

Now? I forget things. I never know how I will feel the days I’m going to hang out with friends. I try to stay on top of my correspondence but as I share more of my medical story, I’m concerned this will get more and more difficult to do. Corresponding is actually quite taxing, especially these days.. I’m trying to figure out a way to have someone help me with all that. The healthy side of me knows I could be missing important medical advice. The unhealthy codependent side of me is worried I’m upsetting people by not writing them back!

I’m under such pressure right now. I have to make the right decisions at the right time or…I won’t make it. It’s a pressure I don’t wish upon anyone (ok, ok, I WOULD wish this upon Mitch McConnell..grrrrrrrrrr, what a dream it would be to take THAT man down).

How do I juggle fighting for the IV nutrients that I desperately

Read More

The long week is over 4.12.19

The long week is over 4.12.19

I’m definitely feeling better mentally than I have in awhile. We got best case scenario news about my dad - though he is far from out of the woods - which is a huge relief. I can’t think straight when I’m worried about him! It’s not just my dad that I’m worried about - also, he is a main caregiver and of course, we share the Lynch so if he is struggling…I can’t help but wonder: is that my future?

It’s nerve-wracking to live with a ticking time bomb buried in my DNA. People get so excited that I’ve made it five years since surgery. But the longer I go without another cancer, the more nervous I get. When will it happen again? What will it be? Will they catch it in time?

On top of that, not being able to eat much sends me down a more urgent anxiety spiral.

People wonder all the time how I handle all of this.

Read More

I got some baby medicine 4.9.19

I got some baby medicine 4.9.19

I wish I could convey in mere words how wonderful it is to have friends - and new peeps who become friends! - drive me to my appointments. I was very tired today and grateful for the pick-up!

AND, and and, I got to see an old friend and her new baby that is the cutest snuggle bug! I love holding babies and having them sleep on me. Like I said in a previous post, I’m totally good with how my life ended up (IN THAT AREA at least), but it’s so fun to visit with other people’s little bebes! It felt like such a treat to hold him, visit with my friend and get my IV bag.

I ended up feeling sick afterward - I think the glutathione made me woozy. I’m not feeling great today. I’ve been having a lot of pain the last few days. What’s more worrisome is that the pain is in new areas of my stomach. Usually, most of my issues are on the left side where the attachment between large and small intestine is (I have a itty bitty part of colon left). But this new pain on the right side? I don’t know. It’s definitely not good.

I’m also having pain while just sitting around. It took me a LONG time to come up with my current system of IV fluids, walking, stretching, yoga, tea and broth in order to reduce pain. The fact that there is NEW pain even when I’m doing most of my routine - I only did a little bit yesterday so that could be part of the problem for today at least - is very troubling. I’m running out of tricks.

Read More