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...)

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

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.

There's a cloud looming over me....

Oh loves, I'm not feeling well, emotionally and thus physically. 

I think it's important to admit that I'm scared. Perhaps by acknowledging it I take away some of its power over me. 

I'm scared of small things like figuring out my new bus route to work, and I'm scared of larger things like living with someone that has little understanding of chronic illness and how exhausting it is to be in constant pain. I'm scared of using a wheelchair but also too terrified not to; though I'm afraid that trying one will end being a  to be a waste of money.

Money is terrifying. I'm worried that I won't be able to work enough hours to afford rent - but here's the thing: I know I will. I know that I'll master this bus route and look cute in my chair. I know that I'll work enough for rent because I kick ass at work have missed it constantly since being sick. So I'm afraid of those things now but I know ultimately that my strength will push me through to success. 

So what terrifies me then, is what my strength cannot carry: and that is the relationships that became warped by my extreme circumstances and ultimately lost entirely. I don't know how to fix that. I mourn those that I've lost, some of whom taught me how to love. I don't know how to live each day with such gaping holes in my heart. And that terrifies me and stings constantly. 

I want to share this moment because this is part of the journey. It's not all hopeful with teddy bears and roses; some of it is weeping alone and wishing someone were there to hold you. 

I just hope one day I find someone that will, who will hold me and stick by my side. And I hope not to have hurt those that tried. 

I am lost at what to do; and now at what to say.

But this is my truth, and so I will share 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."

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.