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

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.)

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.)

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.