A Familiar Story

I saw this and was too inspired not to post it here.

I've been through all of this, even the non-"cute" version of this medicine, where I very much had to see the needles.
I always have such weird feelings when I hear of others' diseases because so much of an illness is suffering alone.
"What a terrible thing to doubt your own reality," he says, and that sums up the existential chaos of autoimmune right there.  So much of a disease is defiance, persuading ignorant others that there really is a problem, that there's almost a badge of "I've suffered more than you" that comes from the need to prove your pain.
And it's videos like this, it's sharing your sufferings and your truths that breaks the assumed solitude that is often diagnosed along with an illness.

This video is incredible.

It's Easier Balancing the Headstand

My health comes in waves.  With autoimmune, my symptoms and needs tend to shift dramatically every few months, affecting my sleep cycles, pain levels, ability to eat, to move, etc.  And despite diligently following the rituals of whatever the health god within me decides it wants that week, I’ve had a significant flare about once a year over the past four years.  And this is considered remission.

Now keep in mind, every body, even the ones with the same diseases, face different symptoms.  So for me, a flare means enough pain that I can’t eat, hospitalization until it’s “treated” and then leaving the hospital and feeling like a college graduate who’s supposed to be set to succeed but feels no different than the day before.

A.K.A. I’m not usually back to 100% for maybe…another year?

It’s a lot, but I do love my Crohn’s.  It forced me to become independent before I knew that was an option.  It’s how I have amazing friends that I’ll have for the rest of my life.  And it’s where I grew my empathy.  Thus I promise this isn’t a sympathy ploy.  I share these insights so you can begin to understand my excitement to be a little bit closer to being back on my feet.

And I’ve been doing yoga :)  I did dance as a kid, physical theatre in high school, circus in spurts throughout college…and I’m learning that expressing myself physically is how I tap into the essence of who I am.  Physical conformity, whether that’s constraining myself in a uniform, not being able stretch or move, just standing as a decaying tree…it’s my bird cage.  And I can only fly when I am present in my body.

Now physically, this isn’t something I can commit to.  This is like having a temporary gig that pays well and feeds you.  It’s wonderful but you know it will eventually end, so you eat up, get comfortable, but not complacent.  

And I do have to be careful not to overdo it.  Again, it’s not a set rule (because my body likes to change those just as I begin to figure them out…) but generally when I push myself, I tend to oversleep the next day by about six hours.  It’s like my body has a manual override.  This happened once from walking.

Yup.

So...with that in mind, to be able to have a morning routine.  To be active again, maybe ready to take a class with fewer rest breaks than I’ve been giving myself, even just to need to ten and not twelve hours of sleep a night…  I feel so much more more alive.

And while I hope it lasts, I focusing on enjoying every present moment.

(mandated yoga photo.; please note the irony of this being the image of being back on my feet)

The Only Time I've Used Geometry

So I was in the hospital for two days this week, which is actually the shortest hospital stay I've ever had. Usually I end up there when my intestines become so inflamed that they stop working, and it usually takes a week, sometimes two, to get them back on track (pun intended).

This time, it was just a stomach bug, which causes inflammation in healthier bodies, escalating in mine like a vat of gasoline embracing a match. 

I've dealt with vomit and weird bowel movements for as long as I can remember, so that I can handle....it was the pain that sent me to the ER. Understandably I have a pretty high pain tolerance; most of the time I don't even feel it and can only tell that I'm in pain when I realize that I've turned irrationally irritable or emotional.  So for me to feel so much pain that I can't sleep.....usually means it's severe. 

In this case, "not as bad as it could've been" was the medical consensus. They still found a few things that have made a few of my friends gasp, but apparently that's not too much of a concern when it comes my body. 

***

It's funny. I've had this disease for almost two decades now, and have faced a wide range of emotions regarding others who get sick. For instance, I have a few close friends with bad cases of Celiac Disease, and I'm genuinely jealous, because their bodies can actually heal themselves, whereas mine eventually requires surgery to have the most diseased pieces of me removed. 

And then there are others who've had one medical difficulty, perhaps similar to the "non-concerns" the doctors found in my body this week, and it's their backstory. It's the story they tell on a first date, the defining moment of who they are, something shared as casually as their sign but with the same sock value as what's recently been in our news. 

And it's hard to even associate with people who revere their quick dashes of bad health, when medically I should be able to empathize. But my conditions are finite; hopeless, without cure or resolve; something that will live with me until the day I die, and perhaps even continue in my spawn should I choose to prolong this.

But unlike those who immortalize their medical records, I have chosen a legacy beyond this. 

For them, 

I've learned to repeat to myself that "everyone right now is facing the worst thing they've ever faced."  

Like similar triangles, the size of the situation is irrelevant because the angle from which we face our circumstance is the same. 

And for myself,

I have decided to change my other angles. 

I see them as my outlook, and what I can achieve in spite of the cards I was dealt.

I took a hard situation and polished and sanded it down, smoothing it into something beautiful. 

And the ability to do so is my skill. My backstory. My defining characteristic.  

To be given chaos and still move closer to the equilibrium of the equilateral, to bring myself perpetually closer to the life I want. 

And maybe just maybe, this is a skill that I can inspire in those around me that they can share with those around them, and collectively we can scrap and sand down this Trump polish our country back towards equilibrium and peace. 

 

Hospital-iversary

This time last year I was in the hospital. I was in so much pain that I would shake and whimper, which disturbed even the friends who'd come to help me through it.

These hospital-iversaries are never fun, because it never feels like something that's behind me. Just because I survived it a year ago, doesn't mean I won't be in the same situation again sometime soon.

I know because I've been here before. Literally, too: I am writing this across the street from the New York ER that I entered two and a half years ago.
I sit at the Mexican restaurant that my visitors would frequent.... I'm never able to eat when I'm in the hospital, and after a week of that, I could always smell the restaurant's scent that permeated into my friends' clothes.

I'd look out of that hospital window on the 8th floor, and watch the little people down below doing their little people things. Picking up after their dogs, wiping the snow off their cars.....menial tasks, but ones I longed for instead of being poked and prodded and pained.

I've always said there's a part of you that has to choose to heal. To be healthier, to leave your sickness behind like it's a terrible boyfriend.

And so here I am, eating the forbidden food if the healthy, one of the little people, doing those little people things; on the eve of once again being trapped in a tower too high up for my hair to reach the ground.

And I don't feel healthier. I've tried to leave my sickness, but today I went to a medical appointment in the same office as oncology.  People who look death in the eyes each day, and today I met their eyes as well. I face pain daily not death, but I recognized their gazes. The feeling that the sickness is in control, we're just passengers praying our genetic and circumstantial seatbelts will be enough to protect us.

I wish I could go one day without having to notice my health. And maybe that's the issue: I no longer believe that to be possible.

So something needs to change. I'm taking care of myself, I don't need to be surrounded my nurses and doctors, I'm eating, I'm doing my little people menial tasks, and still- I want more.
So today I am deciding to find out what that is and go after it.

And that is a decision fitting for the temporal and geographic anniversaries of not feeling in control.
I am choosing to believe again that it's possible.



(Photo of the food to come)

Medical Networking....Because Being Sick Is Not Enough

Starting over in a new city can be hard when it comes to friends, a routine, feeling like you have a home..... but the hardest way to start over is medically.

To be bluntly honest, The easiest way is going through the ER.  I have so many different conditions, that no single doctor is qualified to attend to all of my various health needs.  So rather than finding a doctor to refer me to the other doctors, checking insurance coverage, coordinating appointments for at least four different docs, usually months in advance, and having to get to and keep track of all of these appointments when I'm already weakened from pain.... the ER has them all available and in network, and they all come to my side when I need them.

I'm need another nerve block.
Fortunately/unfortunately I've done the ER routine in New York City a few years ago, so I still have my Crohn's doctor.  Unfortunately, however, he knows no one who performs nerve blocks and doesn't know anything about the condition my LA pain management doctor identified and was treating....

So here I am, proactive enough to know what I need and when....and here are all the steps it took to maybe possible have a lead:

1.  Called old doctor (if I didn't have him, I'd have to find a primary care to refer me to him, putting me here about two weeks later, if we were moving efficiently)
2. He knows an anesthesiologist.
3. Googled that doctors name.
4. Called the wrong medical practice and got another number that might work for him.
5. Called the right one and gave them insurance information.
6. They checked my benefits and called me back. We scheduled an appointment.
7. And so now I'll be seeing him, in hopes that he performs nerve blocks and if not can link me to someone who does.

He is also out of network, which for now is covered, but come January 1st, I won't be able to see him until I've payed the copay equivalent of $5,000 for his services to then be at least partially covered. Otherwise he'll own every I have.

Years.
Years of self research to know my body this well, but what's taken even longer is knowing how to work the system. Not work it even, just survive in it. I'd be dead if I hadn't. Homeless, in pain, unable to get the care I need, in debt, and eventually dying from lack of medication.

I am so thankful to be working through this when I'm at least somewhat stronger physically than I was even a few months ago.

I also have to call three different medical offices to get copies of records sent to these new doctors. You know, because having the conditions aren't bad enough....but I need to have other doctors to prove that I have them, otherwise I'll be treated as a junky and not given even a milligram of help or respect.

This is why it's easier waiting until my body starts ripping itself into pieces and going to the ER.
Somehow that is easier than this.

I really hope this doesn't start to consume my life again.....I just started feeling like a person.

I Couldn't Have Wished For a Better Thing to Read When I'm Crumpled in Bed in Pain

I'm flying to Austin tomorrow for a week of training, giving me just 10 days when I get back to LA to pack up what I can carry, mail as much as I can afford to keep, and donate everything else (without having a car to get to these places) before I leave for NY September 1st.

I still don't have someone to take over my lease, I haven't found a place in NY to live yet, and there's still 1,000 other things I haven't gotten to do (like canceling my internet, getting medicine, etc...).

So on a day when I feel like a quarter of what I should be, it's nothing but rewarding to've come across this article about a fellow Crohnie's reaction to another person battling our same disease managing to win a silver metal.

Like the author of the article says, somedays it feels like, "Hey, I probably can’t achieve greatness when my body barely wants me to achieve alive-ness."  And there's also a weird sense if inferiority that if someone with our disease managed to do so much and yet I can't get out of bed....I must be failing somehow.  But as the author states, there's a strange validation we get from reading the NBC Sports article outlining how Crohn's has impacted the Olympian Kathleen Baker; because it's not a tale of someone rocking the disease better than I have, it's a story of someone struggling just as much as we have and still finding glory.

It's wonderful to know, on days when I feel like I need to be so much more than I am, that I'm not alone in these feelings.  That there are others who understand my pain and frustrations, even when it feels like so few around me have actually have a clue, and it's incredible to know that just as we're united in our disease, we can be united in our victories as well.

I can't wait to have a headline of my one some day... :)

(And until then, let's just worry about the move)

What's Wrong With Me: Theory #7

Here’s how we’ve come to the current theory:

Both my fibromyalgia and Crohn’s docs claimed that all looked great on their ends and that they couldn’t speak to my continuing pain.  As a last ditch effort, my Crohn’s doctor gave me the option to get a nerve block from a Pain Management doctor; and fortunately that doctor is best I’ve ever had.

He’s told me that from Day 1 that he had my case figured out, but didn’t want to break the news until he knew that I trusted him.  So after weening off the more extreme painkillers and celebrating the successes of the nerve blocks, he referred me to a Pain Psychologist, because 

*drum roll please*

They believe I’m suffering from Learned Neural Pathways.

So few know of this condition, that when I look for resources, Alan Gordon, the director of the Pain Psycology Center that I go to, comes up in every article (like this) that I can manage to find.

....so I'll try to explain it: My brain thinks I am in danger.  Brains use pain to express danger.

For instance, if you put your hand on a hot stove, you feel pain and thus know not to do that again.

The danger that my brain senses, however, is not a physical danger, so it has to make that part up.  It decided to use a familiar pain, one which I always respond to: my pain from my Crohn’s Disease.

And that’s why my current symptoms act and feel exactly like my Crohn’s disease, without there being any discoverable evidence/inflammation.

And my pain and symptoms are real, it’s just that rather than treating it with Crohn’s remedies, I’m having to treat it with mental ones.  I’m naturally still a bit skeptical, so a lot of the time with my Pain Psychologist has been spent learning to notice when my symptoms don’t always make sense for it to be Crohn's.

For instance, my nerve blocks keep me from feeling my stomach pain.  I’ve said that when I can feel them wearing off but still can’t feel abdominal pain, I’ll instead develop severe neck and back pain.

How does my stomach or my Crohn's Disease relate to my neck….?  It doesn’t.  That's a weird thing.

Personally, I think LA is  or at least is part of the great danger that my brain is sensing.

After all, I was abused here for 18 years and culprit is now nearer to me.

And another strange symptom: within an hour of my flight landing, returning me back from glorious Philly to this stressful city…I was throwing up and  had a fever.  That just doesn’t feel like a coincidence.  That seems like another symptom relating to Learned Neural Pathways

Now, being sick for this long starting with my real Crohn’s flare in November/December, which developed new hospital traumas, and blossomed into not being able to eat for months, and being in too much pain to function:  is definitely a clear warning signal.

Ironically, however, spending that much time spent taking care of my health, depleted most of my financial and emotional resources….Making my situation worse than it was before I was sick.

It’s cute that my brain is trying to protect me…..but Learned Neural Pathways is definitely a maladaptive response.

One that I am excited to be done with.

(Oh, and we've also realized that my rheumatoid arthritis has been getting worse and responsible for my other symptoms....I bruise from standing...)

You Call Me Sick

You think I'm sick?  You know what I am. I'm sick of this year. 

Of losing best friend after friend after friend. 

I complained that I wanted a hand to hold when I weep. 

Now I wish just for someone that I can text.

Everyone that got close to me is gone. 

The love I had for them is calcifying inside of me like; making my heart hard and cold. 

I just wanted to love unconditionally. I don't know how to get over losing so many people in so short a time. 

And the stragglers that are left, I fear infecting.  

Perhaps I am my disease. Not Crohn's or arthritis or asthma or hypoglycemia. 

It's me. 

I am the disturbing one petrifying those who come near.  A Medusa who just wants a hold someone; now too afraid to love anyone new or to chase after the loves I still need. 

It feels like drowning. 

Today once again the cycle began. 

Someone figuratively slapped my wrist for sitting when I needed to. 

Silly me. My brain clearly only functions at standing night.  And because I responded "well I need to do this," HR is now involved. 

They say they're here to help but with the Olympic hurtle track they put between me and working without feeling like an outsider, it feels more like they're trying to discourage me from trying at all. Unless I can get a gold metal in humiliation and tenacity, while not getting paid and eating instant potatoes as my only meal --only then am I allowed to do what my body needs without having to feel fear or shame. 

And the battle never ends. I thought I won this twice before but here they are again, setting he hurtles in front of me. Again the healthy ones with their misplaced concern decide for me that I am sick.

They want me at 100% and ignore my whispers that I never am. Ignore me pleas that I need this to survive. Ignore my tears, my feelings, and my pain: because their voice is louder than mine. 

They don't understand yet they decide what I can't do. I can't sit and still do my job, they say (ignoring the fact that sitting hasn't impaired me from shining at what I do). No, I can't sit.  But if I hurtle my way to the paperwork at the end of the course, suddenly it isn't an issue!  So sitting without a piece of paper: Too sick to function!  Sitting with a piece of paper: Call me Heather Normalton.

It's a flawed system and I'm sick of it.  If I need to sit and it isn't causing problems, let me be. Don't pretend you understand how difficult my life is. Don't even try. Those who do become petrified or flee.

It's a lonely existence. 

And you're right that I'm sick: sick of everything being this hard. 

Headed Towards Happiness

          So I’m finally, finally back at work!  And I’m so happy.  Making money means I’ll be able to ask for less from those around me.

          In the last four months, I’ve relied on others more than I have in my entire life.  A new friend recently asked if I’m looking for a knight to come into my life to slay all of my problems; and I immediately responded that I can conquer them all on my own.

          I may have been physically weak the last few months, needing a shoulder to help me up a flight of stairs, or friends to help me to doctor appointments or grocery stores, but I never stopped being me.  The me that remembers stepping on a bus and leaving my abusive environment without knowing where to sleep the next night.  The me that traveled to a different country without knowing the language or a single person there.  The me that worked four jobs while being a full-time student at a prestigious university.  So yes, I had a partner before, but I never relied on him to fight my demons on my behalf.  

          I’m grateful, of course, for those that have helped me and given me strength, but I would have needed a hell of a lot more if I expected someone to do my healing for me.  I have fought fiercely and tenaciously every day, to get out of bed and move forward with my life.  Once you decide that you are sick, it exponentially affects the time you need to heal.  I have been sick, hospitalized, fatigued beyond imagination, even in agony from pain: but I never let my disease win.  My mantra in my adult life has been not to let my circumstances limit me.    Yes, the can change the quality of the road ahead; while some may have a smoothly paved path, I have potholes and, well, basically rocks being chucked at me as I move ahead, but I’m always moving forward.  Always.

          And now that I am back at work, I’ll be able to move forward at faster pace.  Plus I’m very close to healing not needing to be my first priority.  Instead, I am really interested in learning to be as happy as possible with this path that I am on; potholes and rocks included.  I’ll keep you posted on how I learn to create the happier days ahead.

           I’m still going to need people in my life, but only to love, not for favors.  I am in control again.

(a photo from a happier day, reminding me of the ones ahead)

What Questions Do You Have?

Through my decade of having an autoimmune disease, I've learned that I can empathize with a lot. There are hundreds of stories of guilt and healing, of preservation and persistence, of struggle and resolution that I could tell - so what would you like to hear?  What advice do you need?

Send me an email to heatherarubarb@gmail.com and I'll answer your questions on my blog. 

P.S. That's not my primary email, so if you would like to be virtual penpals make sure to specify that in your email.  

Forced Back on Leave; Forced to Be The-Sick-One

I am outraged and hurt and betrayed.

I have worked so hard to get better; yes worked.  I’ve been to six doctors appointments a week since I left the hospital, had procedures, memorized doctors addresses, I’ve pleaded for help from the same small group that’s probably as sick of me as I am sick, I’ve had multiple failed IVs that leave me with gross and notable bruises for months, I’m been in pain, been told that my pain isn’t real, and gone to some doctors that care more about my money than they do my treatment.  I’ve struggled on stairs, which feel like the 200th sit up that you just can’t really manage to do, each step has felt like that.  I’ve moved from one terrible living situation to another, and had some close friends blame it on me.  They used the word “disturbing.”  I’ve lost friends, people that were the closest thing I have to family, pleading with them to let me do something to keep them in my life and still lost them with the heartless phrase “I’m out.”  I’ve had people insinuate that I am the reason that I’ve lost my support group, that it’s something that I am doing wrong.  I think it’s that my life is too exhausting for others to keep up with.  But perhaps I am that “disturbing” and terrible and at blame.

But I thought maybe going back to work could help.  It was at financial necessity, yes, but also I thought seeing people, new people, and old people that haven’t come to help me but possibly still care, I thought that a forced community could help me feel less alone, and less like my solitude was my fault.

And I had a glorious week of it, of a community that hugged me and welcomed me back and now have been told I have to go home.  They are forcing me to go back on leave, thinking that more time to sit alone at home reflecting on how lonely I am and how much I miss the people that I still love as my stomach growls from the lack of food that I can afford…they called this a “gift.”

I want to be back at work, and I’m forced me to stay home.  They blame it on me for saying that the restrictions they aren’t currently in place would help me.  Yes they would, but I’d take back everything that I said *in confidence* to be able to work.

They say they don’t want it to be at the cost of my health…..but stressing alone at home about how I’m going to pay rent, where I’m going to find food, how I’m going to move when I don’t have boxes or anyone to help me…that isn’t any better for my health.

 I am so alone.  I feel like a burden to anyone that lets me tell them how hard my day is….And I just wanted a chance to feel normal again.  To not desperately need company so that I won’t go insane.  I wanted to be around people and feel like there’d be someone to hold me if I cried — but I didn’t cry.  I didn’t need to cry.  I got through last week of work with grace.  I felt normal again when I was around my peers and like I could do anything….I wasn’t assigned to do anything, however, but I still felt happy to be back.  Happy to not spend the day alone. Happy to feel like there’s a reason I’m getting better and I felt like in that environment, I could grow.

And they took it away.  I said this is not what I want.  This will not help me.  This just causes me to stress which will possibly more detrimental to my health than trying to work without accommodations.  But there are ways.  There are different ways in which I could work without it hurting my body.  You could do that.  You’d do that for someone who started feeling sick while they were here… But nothing I said mattered.  The more I fought back the more I realized I didn’t have a say in the matter.

And that’s what stings is they think they’re helping me.

That forcing me to spend more time in an environment with a roommate that triggers me and decided to kick me out after a day, is beneficial to me.

They think that clearing my schedule gives me time to do what?  I’ve already booked appointments around the days they said I could work.  They put me on the schedule for the next three weeks.  I can’t believe they’re just taking it away.

They say it’s until my restrictions come through with the third party company and our company’s HR.  Buuuuut they’ve had the information since February 6th and haven’t gotten it done and now the third party company has given my case to a different sector of what they handle, who will call me eventually…..and now I don’t even have a case worker to contact to ask how long this is going to take.

My managers, who haven’t had to juggle the phone calls between all of the above, are optimistic that this will get resolved soon so I can be back at work……but I feel like I should to get another job to pay me in the meantime.  Because again, their medical leave doesn’t come with financial benefits, and I can’t just sit back with my ability to eat and have a roof over me head depending upon how quickly paperwork can get filed.

Of course that quickly found temporary job isn’t going to care at all about my health, but still…. I don’t want to be homeless.  I’m already barely eating so I can afford to pay rent…but with no income, I don’t know what else I can do.

Again.  This is not helping me.  I don’t wan’t to be in this situation, I want to be back at work.  Like I was a week ago.  I want to feel normal again.  And  I don’t think I can forgive them for taking that away from me.

tear stained glasses

Back at Work, And Trying to Celebrate

Hey loves!
I haven't written in a little while, probably because I'm still trying to figure out how I feel.  I'm back at work for the first time since my flare started three months ago, and it's been really tough adjustment.

To be perfectly honest, I don't feel ready to be back, but financially I need to be working, so back I am.   I'm better than I was even a month ago, but I'm still not feeling back to normal and I'm struggling physically and emotionally.  For instance, someone bumped into me yesterday and it winded me so much that I had to sit down after it happened, which was frustrating after a such a simple little bump.
Additionally, it was discouraging the other day when someone complained to a manager that I was using my phone, making the assumption that I wasn't using it for something recreational and not for work.  That's not who I am.  Just getting to work each day requires so much commitment and effort, that I'm not going to waste anyone's time once I'm there.  I was using my phone to take notes as I was learning new material.  I would have told them this if they had come to me about it, but instead they assumed they knew me and went straight to a manager to get me in trouble.  It's these assumptions that I'm really sensitive to right now, after facing something so difficult that no one really understands.
Even a few months ago, when I ventured to a work party, something scary emotionally as this was the first time seeing everyone since the hospital and scary physical because I was in pain and still weighted so little that a gust of wind could blow me over....there, in this vulnerable state, a coworker started badmouthing me behind my back.  He was making fun of my energy or voice or something.  After everything I had faced, he just needed to talk to me and I would share with him the struggle and agony that I have faced, and yet he assumed he understood and decided he was in a position to judge.

Of course that person and the cellphone person are not the majority, and I'm not always going to fall over when someone bumps into me.... but theses are the stories that play in my head when I'm having a rough day, adding the the countless number of reasons to give up, telling me that all of this is more than I can face.

So I wish I had glamor stories of being back to work and how it's felt like coming home and being given armfuls of puppies....but instead it's been another challenge to work through.  To prove how strong I am to people who assume less of me, and to work past how physically demanding it is so I can get paid enough to have a roof over my head and food to eat, if my body that day decides that it'll let me...
I wish this were even close to being the conclusion of my difficult journey but it's not.  It's another chapter.  One I plan to finish gallantly, no less, but still it's another battle to work through.

So that's how I am.  I'll improve physically, I have been a little each day.  And I'm grateful, still, to only have two stories of animosity in the face of what I am facing; there have been countless smiles and hugs and I know it's a fertile environment in which I can grow.  Perhaps my first step is going to be not letting the harsher voices get to me as much as they do.

With my honestly and transparency in my journey, it probably comes as no surprise that my goal is to be understood...but perhaps I should accept that there are some that don't want to know and won't allow themselves to learn about the lives of others.  And with such a big world full of so many artistic, unique, diverse and wonderful humans, it is truly their loss.  So I'll continue jouurneying forward, and hope their negative grumbles don't drown out the jovial cheers of the others.  It's a wonderful world, and I plan to enjoy it.

Hitting the Road Again...

So I think I am cursed.

I thought the other day was a great day.  My new neighborhood is safer and because of that I can finally explore again.  There are great things in a ten minute walk in any direction.  I also love that I am basically neighbors with the studios that house my dream job; if I can see it from my window, them maybe I can actually end up there.  I’m also closer to work, my doctors, and my friends; which all equates to a healthier life.

So this was how I started my Tuesday.

And yet it ended by wondering if I am too broken of an individual to not cut everyone I touch with my jagged edges…  In under a day, my new roommate decided that I’m not worth getting to know and that she would rather break our lease than work together to create a peaceful living environment.

I hate having to acknowledge this, (as I don’t think it’s a constraint worthy of how this situation has unfolded,) but my PTSD was triggered by her that night, but like any physical injury, it just requires a little bit of time to heal.  For instance, if you twisted your ankle, you need to sit down for moment to let it rest, and then it’s better.

I just needed to sleep on it and then I knew I’d feel better the next morning.

Instead I woke up to a message that had escalated the situation beyond something that could be resolved.

I’m still trying to remedy the situation, like I have been doing constantly for the last four months….but my circumstances seem to only get more and more impossible.

And now I’m sitting here worrying that there’s something wrong with me for having yet another ailment that I didn’t choose, that’s now altering my chance at happiness.

So I am looking for another place to live, again….and in doing so I think I have burned the bridges that I have left and I don’t know where to turn for help.  I didn’t choose this.  I didn’t want this to happen.  I thought by hiding in my room I would be avoiding any chance of this happening.

I’ve lost so much since all of this started.  I’m tired of everything being this hard.  If I knew how to give up, I would.  

I’ve just faced so much physical and emotional pain.  I don’t know how to heal back into something that can be fixed.

My Most Recent Health Update - As Seen On My GoFundMe Campaign

Here is my most recent update. If you would like to contribute, and oh my goodness will it help, here's the link for the campaign: www.gofundme.com/healingwithheather

"Today I got my third nerve block!  The doctors STILL have no idea what's causing my constant pain, but this has so far been the only treatment that helps lessen it.  Of course it's not a perfect solution; its kind of like plugging a leak in a boat, but really needing to get back to shore.....but for now, I'll take whatever keeps me from drowning.  Plus, a nerve block is the only thing that has allowed me to eat food, and after not eating for two and a half months, I assure you that food is the greatest of all things :)

The included photo is me before the procedure, the IV, me after the procedure, and an example of the amazing food that I can now eat. 

Also I went to mention a little bit about invisible illnesses.  My before picture looks Facebook-profile worthy, but what you don't see is how much effort it took to shower this morning, when every part of me was almost too sore and pained to just get out of bed.  So just because I look like myself and "healthy," that doesn't mean that I am.  That's what an invisible illness is. 

Even directly after the procedure, when I was still loopy from the anesthesia, a woman angrily forced me to give up my seat for her, assuming that I didn't have my own health problems simply because of the way that I look.  I was too tired and weak to fight with her, and gave up my seat, and then she told me that I should smile....... Clearly not everyone is very educated on or open to others' struggles, so if you glean anything from this update, I hope it's considering the pain you can't see, and to value and respect it as much as you would more obvious injuries, such as someone with crutches or with a cast. 

But of course this won't me a stretch for you; you are the good ones, as you've already gone of your way to help me, showing that you understand.

The procedure was $30, and then I spent $70 on medicine, and that's $100 I didn't have without your help. Thank you again. You all have made my healing possible. I really couldn't have done this without you."

How Hope Wins: Life is Like Hopscotch

So unsurprisingly, these last few days I’ve been thinking a lot about the importance of hope.

It’s interesting, hope works a lot like my pain management does.  To explain, I’ll clarify a little about my meds: Right now I’m on a narcotic that I can take every 4 hours.  One way to do this, would be to wait until I am in pain, and then to take the pill.  But then so much of the drug is then committed towards getting me out of the bad pain and back towards neutral…..this is sounding unnecessarily complex.

Hmm…Pretend it’s hopscotch.  Where I’m trying to hop towards being pain-free, and I have the pain monster behind me.  So the drug can help me move 4 hops forward, but the pain has already made me move backwards three.  So when I take the medicine, I really am only moving forward one square towards being pain-free!  Thus, the other way to try to manage pain is to take the medicine every 4 hours, not waiting for the pain to join the hopscotch game.  That way I can move forward 4 hops every time I take it, and be closer to feeling better.

(Now, this is a hopscotch game to play with doctors, of course, because narcotics are a little more complex and potentially addictive than childhood games, but as long as that is known, the metaphor holds.)  (….we can pretend it’s a game of hopscotch over a lava pit and my doctors are my hopping-coaches.)

So.  I have realized that hope works like this too.  It’s a hopscotch game headed towards happiness, with the dark feelings behind me.  If I try to think of something positive, I will move forward three squares towards happiness.  But if I wait for the sadness to take over and pull me back 6 hops….then I’m barely moving forward.  I’m still hopping three steps towards happiness, but I’ve been pulled so far back that it may not even feel like progress.

Thus I have learned that happiness is something that must be managed like pain: with a daily effort towards moving forward; otherwise it’ll feel like the darkness has taken over in my game of hopscotch.  And it’s important to feel like I’m always moving forward; that I have that control over my own happiness.

In my last post, circumstances had allowed the sadness to pull me so far back that I felt like I was losing my hopscotch game towards happiness.  Generally, I would hide in moments like this, not publish them….but I am committed towards the honesty of where I am in my healing process.  So I wrote about it.

But.  Just because I was losing the game then, doesn’t mean I’m not doing everything I can now to hop towards happiness.

It’s just going to take a little more daily effort, I think…..which to me sounds like a lovely project.   And I have a few ideas a-brewin’ :)

In the meantime…why is all of this relevant?  I have another nerve block scheduled for today.

This is the treatment that was the *first thing* to help me in months, which then failed after three days.  So as you can imagine, it was a ton of excited hops forward, only to be pulled even farther back by the fear that the pain monster is always going to win.

And yet I am nevertheless trying again today.  It’s a gamble and I’m wagering my physical and emotional states….but again, I need to feel like I am in control over my own hope and happiness.

So even if the treatment fails again, three days of relief where I feel released from the clutches of pain and disease…..perhaps this is such a victory that the elation of it can bring me residual hope, even when the treatment begins to fade.

Because even though I’ve spoken of two hopscotch games, the physical one of hopping from pain towards healing, and the emotional one of moving from sadness to happiness…they’re really both the same game, with  the bad behind me and the good in front of me.

And I’m still learning all the rules…..but I am thinking that I can choose the number of hops I take.  I think I can limit how far back pain pulls me, and I think I can allow my own victories to boost me even further forward.

So in addition to the nerve block, today I’m also trying a bad-block.  And I need hope to win.

This is my new goal.

Wish me luck today ;)

(above are four moments where hope won during hopscotch.  The first time I got to wear my clothes after 10 days in hospital gowns; a puppy that decided she loves me; a security guard that made me feel confident in a wheelchair; and a sparkly reminder that everything is going to be great.)

When It Hurts

I am scared. 

I am scared and I am weak. 

I want nothing more than to have someone’s arms around me, someone to hold me when I cry. 

I was surrounded by others in the hospital and yes it was harder in theory then 

but emotionally it’s just as tough now, yet now I am alone.

I still want to be held when I’m afraid,

I want to know I’m not facing this by myself. 

But I feel like I am. 

I watch TV shows where people have their families, 

There to protect them even just by them knowing they’ll never be on their own.

But I am on my own. 

I am crying and there is no one to hold me. 

I know others are there and love and care  

        but always from afar 

It seems that no matter how close I move to them  

        it’s still always me when the tears fall
No matter whom I text or meet or love.  

       it’s always just me. 

All I want is to be in someone’s arms. 

Gently hearing their heart beat against me as I cry, feeling their breath all around me, like a little safe bubble, guarding me as I weep. 

And it’s when I can remember their heart, remember the feeling of the heat coming off on their skin onto mine….that’s when texts or hearing their voice isn’t enough. 

Separated from their embrace, even a loving voice can sting;

(As is most often the case with the those I most want to hold.) 

So tonight I am scared. My treatment failed and I am devastated. Heartbroken.

But no one can come. So I am weak and alone, 

As I try to hold myself as I cry.

Little Post on Nerve Blocks

So I ended 2015 with a nerve block, which is a symbolically humorous.

Let’s explore: the nerve block essentially tricks my brain into not understanding the bad of what I am feeling.  And 2015 could have been bad.  Of course.  I had health issues that left me feeling out of control of my finances, my housing, and even my body itself.  This could cause anyone to feel a bit of a crisis, and sure I faced that, but with my own emotional nerve-block-squad in the hospital, facing the confusion at my side.  Virtually, physically, in the form of stuffed animals…. I have felt so supported and loved, that you all really have been my emotional-bad-barrier, helping me stay positive and like my pain-free self.

Which brings us to the next phase of nerve blocks: when they fade, and we have to face reality.

The nerve block can last anywhere from twenty-four hours to two months, and it seems three days was my happy buffer.  I got to have three dinners, three lunches, and many happy snacks.  I found a new gratitude in being hungry and being able to eat.  And to be honest, every time that I have to stop eating again it gets harder emotionally.  Because I remember the ease, and the taste and how normal my life felt for just a quick glimpse of a moment.  And that fades, too.

So I’m looking at day 3 of 2016 with a different set of eyes and a different level of pain, but am still hopeful.  I’m back to not having any answers, but I still have my emotional-squad, so I’m holding tightly onto that and onto my stuffed animals as I squirm in bed, waiting for the pain to pass.

So here’s to a little more Ensure and pudding, and hoping that through the clarity of a block-less 2016, I begin to see real change.

Health & Emotions: "I hope that by expressing myself, I can connect to those that understand the unusual"

Hey loves.

I wish I had better news for my update to you, but I’m still struggling with everything.  

Health-wise, my diet was changed last week back to solid foods, but the pain I get when eating is the same as it was before all of my hospitalizations.  My doctors are confused and I am, too.  I should be better by now.

 And it’s hard, my friends, to get out of bed each morning and take my meds when I feel like nothing is really helping.  I still do it because I am an intelligent individual and know how important it is, but emotionally it gets harder each day.  Plus I still need to find a place to live in the next fifteen days and I don’t know how I’m going to balance all of this when I have to go back to work. 

This is all just a lot for just me.

To help keep my spirits up, I’ve been trying to do social things every few days.  I went to a party, for instance, to see some of the people that I miss and had welcomed into my world a few months ago.  It was fun and full of some incredible friends, but it was also really hard.  I didn’t feel strong enough to stand for a lot of the party, and I was in pain while trying to enjoy myself and seem “normal.”  Also not everyone there knew how hard things have been, which is fine and totally their choice, but made it a bit challenging.  

For example, someone told me that I look skinny and meant it as a compliment…..but I’m skinny because I’ve been in too much pain to eat and so I’ve been malnourished for the last month and a half.  It has not been “good” weight that I’ve lost; I’ve felt what it is to stave and to feel my body deteriorate….so all of that adds a different connotation to “skinny” than what is normal and expected.  And the sweet person simply meant to compliment me.  So I thanked her with a genuine smile, but it reminded me of how different this experience has been from what people are used to.  

Reintegrating into the “normal” world is going to continue to be hard, I think.  

But writing about it helps, and I am definitely not the first person to feel this way.  So I hope that by expressing myself, I can connect to those that understand the unusual, and at the very least, it will allow us to feel together in this and not alone.

And I’ve definitely felt that connection throughout this experience.  Sharing my story has been powerful beyond what I had imagined.  I’ve been floored me how empathetic people are, and willing to reach out.  And I’ve discovered this power of human connection in all scales of sharing my story.  

From the GoFundMe campaign, where I finally asked for help and in return have been able actually take care of myself without having to stress; to even something as simple posting a picture yesterday of a syringe.  See, yesterday I began a medicine that requires injecting myself every two weeks and so I posted a picture of the syringe (which I hope will eventually not scare me and make me cry).  And I had about four people all reach out with their empathy and tips for their own experiences with syringes.  People really are amazing.  Here is this scary new thing, and I immediately had a support team willing to be there for me.

So although I don’t have huge news on health progress, and yes, it still is a battle each day, I definitely feel like I have troops beside me in this.  Not everyone needs to read these words, nor do they have to even care about what my life has been like these last two months (or 23 years)…..but it’s those that do care, that are reading and reaching, who choose to be my support, that allow me to get out of bed each day and continue to fight this battle.

So to those of you that are my troops: I can’t adequately express how important you are.  

You are my courage, my wisdom, and the voice telling me I will survive this battle.  And for that, and everything, I can’t thank you enough.

I Am In Awe

I woke up this morning in awe.

First for good humans.  I started a GoFundMe yesterday (finally acknowledging that I need help with everything that I am facing), and it hasn’t even been 24 hours and I’m almost a third of the way to my goal.  And this is you!  You beautiful and kind souls that are reading my words, caring about my stories and my smiles.  I can’t stop crying happy tears that you are in my life.

I’ve spent so much of my adulthood trying to prove myself as a good human: one that gives more to the world than I take….and for this much kindness to be sent to me, both towards the campaign, but also very much in your words of courage and support….it means I’m doing it.  

Your love means I can be proud of who I have become: because to receive this much warmth…I must be doing something right.  

And I really do love you all so very much.  There have been times when the word “family” made me sad-cry; as if it were a word a language that I wasn’t allowed speak.  Like I was an outsider to the concept of a family, and that I never would achieve actually having one.  

But now, especially after my last hospitalization, with everyone who read my story and reached out and sent their love….when I hear the word “family,” I now think of all of you.  

And so I cry cathartic tears of fulfillment and gratitude, in spite of the hardship that I face.

So thank you for that validation, your love, and granting me the courage to continue.

As for awe number two:

I am exactly where I need to be.  I moved to this city to pursue TV & film, and ultimately my goal of using art to give people hope in being alive.  I have a weird history with this city (one that would require a much longer post), but my mantra has always been not to let my circumstances limit me.  So I came here for a fresh start.  It’s been a crazy start, but in the hospital I got to see the sunrise each morning, and saw it as an opportunity each day to heal and grow closer towards my dreams. 

So when I saw the sunrise this morning, far, far from that tiny hospital window, I saw it as an even greater beginning; one as vast as the pink sky itself.  As if my new life were greeting me today with arms full of love and opportunity.

So my friends, my loves, my family.  I am here.  Full of gratitude for you and where I am today.

And I am SO happy to be alive.  So stay tuned, because I think we’re in for a great ride.

my reaction to the GoFundMe:

and today's sunrise

Asking for Financial Help

Hi my loves.
I am at that point.
I love you all.


Click here if you'd like to contribute.