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.

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)

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.)

An Aside: What's On My Plate

In the spirit of sharing my story and what I’m facing each day, I figure I’ll write a bit more about some of the obscure things that are on my plate.  We know the meat and potatoes that are on there (housing and health) but I also have some weird side dishes.  Let’s discuss three of them today. I think this will be my new series, so prepare yourself for an onslaught of sides. 

(Also I'm listing each “side” in all caps, so please say each of them aloud to yourself in a triumphant voice.  It adds importance)

~~~~~

NAPS.

I keep falling asleep.  The meds I’m on knock me out so hard and so suddenly that as I write this I’ve been falling asleep while sitting up.  But I don’t want to take naps all the time (because thenI feel like I’m in preschool), so I end up pushing myself to stay awake….which then makes me even sleepier….and is clearly not the perfect solution.  It’s a sleepy work in progress (which will get easier when my meds change soon).

I’ve also so far shied away from caffeine….but maybe by then I will be able to have the glorious elixir of life (coffee) once again.

Until then, I’ll try to embrace my existence as the dormouse from Alice in Wonderland.

EDIT: since writing this, I had a “taste” of decaf coffee!  Still not my “usual” of coffees larger than my face, but I’ll get there.  I believe in myself.

~~~~

Next.

STAIRS.

They are the bane of my existence.

Every step feels like rock-climbing.  I’m constantly uncertain of my footing, always preparing for how to catch myself should I begin to fall.  I have stairs going up to my apartment currently, and they are the worst part of my day.  I have tried railings, stepping one foot at a time, using a friend’s arm….and honestly there is only one thing that works: there is a glorious friend in my life that gives me piggy-back-rides.

This is the perfect solution to stairs and I owe this friend my sanity.  Being angered by angled pieces of concrete is not a sign of emotional balance, and thus the tranquility that the piggy-back-rides provide me is one to be admired by monks.  Om.

~~~~

THE WAY SOCIETY VIEWS THE SICK

Now this is less of a side dish and more the weird and strong smelling main course, which someone brings to a potluck that everyone is a little too afraid to taste.

So I’ll touch on it gently.

We live in a world where healing is considered weakness.  A friend injured herself and asked on facebook if anyone had extra crutches for “this pathetic gimp.”  Now I’m not going to speak at length about how offensive the word “gimp" is, nor dive into the fact that she was insulting more people than herself by using the derogative term…. Instead, I’ll simply comment on her use of the word “pathetic.”  By calling herself a “gimp” it’s clear that she didn’t respect herself, or anyone who needs the aid of crutches to get around; but, as if that wasn’t enough, she further qualified the offensive noun with the word “pathetic.”  Pathetic is someone that is sad and evokes pity, but in a way that you feel gross about it.  Pathetic isn’t the homeless person pass you wish you could give a dollar to; pathetic is the person that spits on the homeless instead of feeling sympathy.  Pathetic is someone that should know better, try harder, be more than they are failing to accomplish.

And she thought her injury made her pathetic.  That she should have known better, tried harder, been more than she was failing to accomplish….all because of an injury that I assume was out of her control.

I think she should have praised herself.  Rewarded herself for the bravery that it takes to ask for help when you need it.  I think she deserved kindness from everyone but mostly herself, for knowing not to push herself beyond her injury, thus allowing her body to heal at its own pace with the aid of crutches.

I know healing to be something that deserves that much love, but unfortunately society tends to agree with this friend of mine.  The world arounds us prefers the word “sickness” over “healing,” like its some disfiguration you are responsible for.  I have been forced to feel the wrath of “being sick” for almost my entire life; but again, I prefer the word healing.  It implies a process that lasts forever; of finding balance physically and emotionally.  I am proud to be healing.  I am not ashamed of a sickness.  Though some days I wish society could be a little more sympathetic; I don’t want to have to worry about my friends seeing me as “pathetic” for something that is out of my control, which I am doing my best to overcome.

~~~~

So those are today's side dishes: naps, stairs and a rant on society.  As far as what's on my plate, it's  definitely a feast, so I'll leave you here to digest.

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.)

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.

Things That Make Me Smile

A little insight into my world:

Hey loves!  I know there hasn’t been a  lot of news from my end: and sadly that’s because there hasn’t been much change.  I still can’t eat solid foods without being in excruciating pain, and the “full liquids” that I manage to slurp which barely keep any meat on my bones, still cause me pain or at least a very intense nap session…. I’m also learning my body all over again with physical limitations so as to avoid over exhausting myself (hello fibromyalgia, nice to see you so complicated), and thus I haven’t been able to move/pack/find a new place to live.

YET.

It’s all a lot but I’m doing all that I can each day.  And all of that will ultimately happen, hopefully with health news as well.  I’m still seeing close to five doctors a week with a few medical tests thrown in, and I’m hoping that one of those will lead to precisely what’s been going on.

BUT in the meantime, what matters is getting out of bed each day with enthusiasm and the sunshine-attitude that makes me…well, me.

So here’s a little insight into the Things That Make Me Smile.

My Meals

So, only being able to drink things sounds like it can be quite drab, but give it a week and suddenly juices can be divine.  My most recent obsession: white grape juice :) Yum!  In terms of nutrients, however, I try to calorie-pack with puddings and ensures, and nutrient-scrunch with cold pressed juices.  

The attempt at nutrition despite my diet is something I never would have been able to afford with others’ generosity and my GoFundMe campaign, so THANK YOU ALL.  I and my body appreciate it.

Hard Candy and Teas

I can also have candies and teas….and finding ones that taste like real foods are always a wonderful win!  I’m still very partial to Werther’s, though, I’m definitely an old person at heart.

Pampering

I’ve wanted to write many a post on how important pampering has become to me.  It’s hard with so little energy to take care of myself, and yet with no control over my insides, being able to maintain my outsides is incredibly satisfying.  I’ve loved having my short hair, which I can style easily and happily with a little product and a headband.  And when you feel like hell, looking put together is the hugest of compliments.  So from lotions to comfy sweaters, looking like me has really helped me feel like “me,” too.  Let’s call it my healthy glow : )

Little Reminders of Those That I Love

I carry stuffed animals on me regularly now, and am very proud of it too!  Whether it’s my Pushineenicorn that is perfect for comforting my tummy from abrasive seatbelts, to little pocket friends that I can hold during a blood test, these little buddies have really helped remind me of their human counterparts.

Not feeling alone is something essential to the healing process, and I, again, feel incredibly lucky for those in my life.  I am a grateful flower.

So that’s some of my world!  Here are a few picks of my most recent haul.  I had to keep myself from using all my energy jumping up and down with excitement!

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 :)