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.

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."

A Garden Party to Keep the Fairy in Me Buzzing

I made myself a picnic this weekend.  It was full of tea and cheese and toast, and I couldn't have enjoyed this treats even just a month ago.  I'm still struggling in many ways, but it was fantastic treat to remind myself that I still am improving.

(If you would like to contribute to my progress, here is the link to my GoFundMe campaign.  Just $10 is a ride to a doctors appointment, or a month supply of one of my seventeen medications.)

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 healing :)

Hello my sweets.

So I’ll update you a bit on my healing.  I feel confident enough to say the word “healing” this time, too.  When they discharged me from my first hospital trip, it felt like all they did was give me a handful of narcotics and wish me luck through the Thanksgiving holiday.  Fast-forward a few days into that week, and with every bite of food, I was curled up in a ball of pain, sweating and shaking and making sounds like a animal trapped in a cage.  Later into on that week, it digressed further, towards me feeling like that constantly, not just with bites of food.  So that was not “healing.”  Thus me heading back to the hospital and staying for another ten days.

But, here we are this time, five days past my second discharge, and I have yet to decline into that pained state.  I am on new medications for my Crohn’s and for my fibromyalgia, the latter of which some doctors attributed to my extreme pain.  So that’s better.  There are more answers.

I did, however, come home to an eviction, though.  Which is just “wonderful.”   I live in a building without the proper housing permits, so without lots of monies for lawyers, it’s not worth fighting the landlord that simply decided she wants the room back, despite my lease.  She also evicted me while knowing I was in the hospital.  It’s strange to see people that had been kind, show their true colors.  Like a wolf turning from a pup into a snarling beast.  It is horrible to know people like that.

So I need to get out of here…. plus losing the feeling of control over my space has been triggering both my PTSD and my fibromyalgia, so it will be healthier for me to move….now it’s just finding where…and how…when I can’t even get up a flight of stairs without help.

Basically there is a LOT on my plate; but I am getting better.  And I can only take things one day at a time.  And the other morning, when I woke up into the sunshine of a new day, and put on a cozy shirt and I looked at myself in the mirror, I saw no IVs, and had fewer bruises; there were no hospital sounds or doctors in sight.  It was just me.  Healthy and smiling.

And my friends, I saw myself as the person I want to be; who I want to grow into.  So as scary as all of this is, I saw a glimpse of the future; and this whole transition is guiding me towards exactly the person I want to become.  And that to me sounds like healing :)

(Almost Officially) Discharge! I'm Going Home.

And so my loves, here we are.

I am going home today and leaving the hospital.

I am not perfect; we don’t know how to fix me; we haven’t even completely relieved my pain.

But.

We have done all that we can here.   

An important friend of mine introduced me to the game Minecraft.  There isn’t necessarily a “correct” way to play the game, with a list of objectives, or a character insisting you follow them….instead you are just thrown into a world….and need to survive.  Or not survive.  You can play against zombies or with no risks at all.  It’s literally anything that you want it to be.  The only requirement is that you play.  And to “play” is follow whatever task you make for yourself.

I like mining for diamonds.  Sometimes this involves following danger to its lair; other times it includes intricate tunneling systems.  And sometimes it’s just luck.  You’ll be searching for some other simple necessity like coal: usually abundant, often connected in rich veins, ready to reap.  And you’ll happen to stumble upon a diamond.  Just sitting there.  Magical and smiling.

Discovering the source of my pain has been like searching for a diamond.  (Or maybe something rarer in Minecraft like an emerald….I don’t know how the statistics play out, but you get the concept.)

And my doctors and I have created intricate tunnels, trying to find this diamond of my pain.  We followed the forged paths to where we have seen diamonds before.  We have trailed danger, knowing that it is often the zombies protecting the treasures….and yet there we did not find the diamond causing my pain.

And so….we continue to play.

We can either change our objective to something easier instead of finding that very specific diamond….or , if it’s really, very important, -which this is to me- we continue our search, but in a new location. 

Because after spending twelve consistent days in the hospital, twenty total this month, looking everywhere for my diamond: I don’t think I am going to find it here.

So I am going to collect the tools that I have harvested while searching.  In Minecraft it’s things like iron and redstone.  In this case, it is my doctors and the medications they’ve recommended. And I will take those tools with me, and use them to further my search.

I will find the diamond that’s causing me so much discomfort that it’s forced me away from my friends, society and home for the last month.  But, like in the search for diamonds in Minecraft, sometimes you need to go rest in the safety and comfort of your home; let the zombies rule the night; and then go searching again when you are more comfortable in the daylight.  I miss my home.  My bed and my little patio.  And maybe the diamond will  be easier to find than I thought.  Maybe I’ll be out, Minecraft-metaphorically harvesting coal, and I’ll happen upon the diamond.  Just sitting there.  Magical and smiling. 

Who  knows?  Plus my co-excavators in this dig, the doctors, are happy with their redstone and iron and don’t want to find my diamond.  They are changing how they want to play; so I will find other diggers to help me.  There are always more people out there, and more tunnels to build in search of my diamond.

So I am going home today.  I am not perfect, not fixed, and still in pain.  But oh my goodness, I am so ready to search for my diamond somewhere else.  Because later today, I will go outside for the first time in 288 hours, and I will feel the sun on my face, no IV tethering me to a wall, and I will feel so free.  

Being here helped me, yes, but I’ve harvested all of the resources that I can.; now it’s  time to incorporate them back into the life that I love.  

And I can’t wait to share those new adventures with you.  So, a few deep breaths and papers to sign, and then here we go!