Mulling Over A Dream

It was quiet when my eyes were closed. It was when I could be at peace despite my world falling to pieces. I could be in the middle of a crowded room, or in busy store, or even now, as I lay on this cold bed in the middle of the local emergency room… With my eyes closed, I could shut the ugliness of the world out, maybe even pretend I was well again.

Not even a week had passed of 2018, and here I was with an IV in my arm, my mom sleeping next to me in a cold hospital chair. As per usual, no one had any idea what was wrong with me. A fate I had grown accustomed to. Leaving five hours later with a prescription for painkillers I’d never fill, and a suggestion to “get some rest”.

My problem is I can never get enough rest. Not if I want to attempt to have a life by any standards. I can’t sleep my life away afterall.

So in that hospital bed I lay with my eyes closed, waiting for no news. And in that quietness I fell asleep, mulling over a dream. A dream I’ve had many times. One that I know now will unlikely come true. Not so much a dream, but more of a memory…

The last memory of my other life.

The life I had before this was all I knew.

A life that wasn’t filled with medications, cold hospital rooms, and the constant threat of more pain, more fatigue, and a new diagnosis every six months.

Furthermore, a life where I would find someone who loved me for me. Where they wouldn’t look at me and see broken. Where they would marry me no matter how many years we may have together. A life with choices, and maybe children.

It was a good dream. But eventually I woke up and opened my eyes… Back to the cold hospital bed, to the doctor telling me she could do no more. Back to my reality.

I slept for a long while that day, once I had climbed back into my own bed, and my mom departed for the long trip home. I was used to this aftermath of hospital visits. Used to the bed rest, dehydration, and exhaustion that inevitably followed. Used to the loneliness, the unbearable loneliness that came with my disease.

But this time something new followed, I was not so alone. He came with food, and hugs, and the support I needed to get through it without falling apart. And in the days that followed, I realised his love allowed me to mull over a new dream.

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I’m in pain, so I must be a drug addict right?

It’s been three years and two months since I was diagnosed with Severe Rheumatoid Arthritis. Sometimes that time frame seems like a very long time, while at other times it seems like it’s flown past. I can’t tell you how many doctors visits there have been in those thirty-eight months, though I’m sure its well into the hundreds. Which also means hundreds if not thousands of blood tests. Cat scans, x-rays, MRI’s and EKG’s number in the double digits. And let’s not forget two hospital stays and close to twenty Emergency Room visits.

Needless to say, I have a very thick medical record. Assembled over the course of these three years, it contains everything. The hospital where I primarily receive my care, as well as my mom, keep these identical records. My mom, whom is also my primary caretaker, is an exceptional organizer and note taker. She has kept every lab result, doctors summary, and consult record ever produced by the twelve doctors that we keep on retainer. Yeah, that’s right, I see twelve doctors, regularly. Maybe not every week, but most definitely every quarter.
Why, you may ask?

Cause I’m really sick.

And one of the only upsides of this fact is that I don’t usually have to explain myself upon arrival at a medical facility for treatment. They have everything on file, and if  for some reason they can’t find it, well then there’s always Mom, patiently waiting in the wings to remind them of every little medical fact pertaining to my case.

Of course, it wasn’t always like that. I haven’t always had the best of luck in Emergency Rooms, Infusion Centers, and Medical Offices. There are some people who are eager to help, and some who’ve become jaded over the years. But that’s where Mom always comes in handy. Because if I’m slumped over in excruciating pain, or gasping for breath, or vomiting into a plastic kidney bean shaped tray, sure enough there is Mom by my side explaining exactly what’s happening to a nurse or doctor. She is my voice, my advocate, when I cannot speak for myself.

And unfortunately, patients of invisible illnesses can’t always speak for ourselves and be heard the way we should. Nurses and doctors see us in waiting rooms, sitting quietly, with maybe a frown on our faces, a peaked pallor, but nothing that constitutes an ’emergency’. Then they hear our complaints… chronic pain, fever, nausea, vomiting, hot sweats, cold chills, inability to move our limbs, inflamed joints… Well, if to the unknown eye we look normal on the outside, and we go into an ER complaining of severe pain and sickness, guess where their heads go?

That’s right, I must be a drug addict looking for a fix. Because of course there’s no way I could be legitimately ill looking the way I do right? Don’t take into account that I’ve been placed in a wheelchair because my feet are too swollen to put weight on them, or that my face is flushed with fever, or that I’m so dehydrated you can’t find a vein to establish an IV line. That would be too easy.

Fortunately for me, I usually have Mom, whom right off the bat reminds the staff that my medical record is on file, which prescriptions I’m taking, what my severe diseases are, and what has inflicted me that day and my reason for being there. They usually take notice when you have an advocate. Someone who will most certainly remember their moves and choices. Who will keep them in check. That way if I dose off (which happens every time they give me medications), or my pain makes it impossible for me to concentrate, I still have someone fighting for me.

Except last week, when I didn’t. On a rare, fluke occasion, I ended up at the Emergency Room without an advocate or aide. And that day I learned how very important it was to have someone with you.

At 5:06pm, last Saturday, I checked into the Queens Medical Center Emergency Room, with severe side pain due to rib fractures. I already knew what was going on as I had only been there two days prior. I’d fractured two ribs in my back. But because my blood tests had been flagged for possible blood clots, the doctor had told me to come back in right away if the pain got worse and I was feverish. Well, by early afternoon that day I was 2-2, so I ordered an Uber, and headed back down to the ER.

To my surprise, it was very quiet in the waiting room, with only a few patients/visitors seated. I was called almost immediately into one of the preliminary exam rooms, and a nurse started taking my vitals. I explained to her why I was there, stressing that the ER doctor from two days ago insisted that I come back in if I felt more pain. I also told her that it felt very much like I had broken more than just the bones in my back, but that my front rib cage hurt very much as well. She nodded, typed some notes in her computer, and went in search of a doctor, I presumed.

Only a few minutes later did a doctor come into the room. I was shocked at how quickly I was being seen, as the Emergency Room had never been so efficient before. The man introduced himself as an ER doctor and then flat out asked me what pain killer I’d prefer. Baffled at his question I asked what he meant. He again asked which pain killer I’d like to be given, and then started listing some of the well-known opiates that the hospital had on hand.

I was confused. Why wasn’t he examining me? Why weren’t they drawing blood or ordering x-rays? I asked as much and he just sorta looked at me for a minute, like he was trying to read my thoughts. I repeated my questions, Was I going to get another chest x-ray? Should we do another blood test to check for clots?

The second line of questioning seemed to grab his attention, and he agreed that a new chest x-Ray would be a good idea but that there was no point in doing any blood work. He then asked me again which pain killer I’d prefer, this time giving me a choice between two. I reluctantly chose one, verbally stating that I didn’t think it was necessary since pain killers hadn’t worked on me in a long time. Moments later a nurse appeared, and gave me a shot in the muscle in the upper part of my left arm. As expected, the pain killer provided no relief.

I was given another chest x-ray following the shot, and then was escorted to the waiting room for the results. At this point I’d been in the ER for a total of 82 minutes. I waited patiently in the waiting room, until the doctor and a nurse came out to talk to me. They didn’t take me aside for privacy, just sat down next to me in the waiting room to give me the diagnosis. I had been right. I had broken more bones in the two days since I’d last been there. The doctor thought my front ribs may have had a displacement fracture that fully broke apart in the two previous days. He  then asked what kind of pain killers I wanted prescribed, AGAIN.

I was exasperated. I wasn’t there to get high on opiates! Did they not realize I was on a strict regime of medications daily for my Rheumatoid Disease?! A shot here and there of Dilaudid and Fentanyl weren’t exactly doing me any favors when I’d been on the highest dose available oh Methadone for the last two years. It was like offering me Skittles or M&M’s for the pain. I didn’t need a pathetic sugar rush, thank you very much.

At 6:58pm I was discharged from the Emergency Room. Less than two hours after arrival. No blood drawn, no IV line with fluids to keep me hydrated, no labs, and a quick 2min chest x-ray. I’ve never been seen or treated (if that’s what you want to call it) in such a short time frame. And I 100% believe it was because I had no one there to speak for me. They wanted me in and out as quick as possible. If it weren’t for the fact that I did actually have a new fracture, I’m sure they would have attempted to completely treat me from the waiting room alone.

Now I’m one of those people that doesn’t go to the emergency room unless I’m having a legitimate emergency. I hate it when people waste hospital resources on bad colds, the flu, or a twisted ankle. These are all ailments a PCP can take care of Monday through Friday. The only reason I went in that Saturday was the doctor told me two days before that if I had a fever and my pain worsened then I had to come in to make sure it wasn’t an emergency like a blood clot.

But being treated like a drug addict looking for my next fix is unacceptable. I told that doctor and those nurses that I came in per the last doctors request. That I’d been running a fever, and thought I’d broken more bones. At no point did I ask for pain medication. And when offered it I turned it down because I wanted to know what was wrong, not just put a drug bandaid on the problem. And this is let the first time this has happened, nor do I expect it to be the last.

I know that the state of Hawaii has a major meth problem, and that the hospital emergency rooms on island deal with overdoses in excess, as well as the homeless trying to get their next fix. But just because it’s a problem that they continually deal with, I shouldn’t have to be abused by that stigma. There are legitimately sick people that go to emergency rooms and urgent care facilities to address their legitimite illnesses. We shouldn’t have to convince medical professionals that we want medical attention, I mean that’s why you go to an ER in the first place.

I don’t know who is more the problem. Is it the medical professionals that attach the stigma to us as people who just need a drug dose instead of legitimate care because that’s what’s they are used to? Is it the homeless and/or drug addicts that abuse the hospitality of hospitals where they can get water/food, and maybe even a bed for a few hours, while trying coercion tactics for their next fix? Or isn’t the healthcare system itself, deeming which patients are more important, who should be seen quickly and who should be shown the door?

I just feel that more harm than good is resulting from all of this.  Especially as another day passes where I’m in the ER having to explain my severe medical condition to get another doctor who refused to look at my medical record to see that I’m a legitimate patient. I shouldn’t have to beg to be seen and/or treated. When did my rights as a patient get pushed to the side? Why do I always feel victimized when leaving the hospital?

Enough is enough.

“No Doctor, I would not like a shot of Dilaudid for the road home. I’ll just take my x-rays that proved I was right, and that I do have broken bones, and be on my way. Thank you for making me feel like my ailments weren’t as important as that meth addicts’ in the corner over there. Perhaps he’d like the pain shot you keep trying to push on me.”

 

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**The x-ray on the left was taken on Thursday and the one on the right, two days later on Saturday. In the bottom right hand corner of Thursday’s x-ray you can see that the bone is intact, while on Saturday’s you can see the fresh break. Proof of my severe Osteoporosis. Only two days apart with no accidents or falls- a full break of rib bones.**

 

 

 

If you would like to help support me medically/financially in my journey, please visit my page at http://www.gofundme.com/sixthousandsteps. Thank you.

 

When good turns bad

In life, we have good days and bad days. Before I got sick, the good days far outweighed the bad ones, and even when I did have a bad one I could usually bounce back pretty quick. But when you suffer from a debilitating autoimmune disease, “bad days” are more often than not, and those days can sometimes stretch into weeks, even months. I didn’t believe my doctor when he originally warned me of this. I couldn’t even fathom what a ‘bad week’ could look or feel like, and like so many other warnings I heard early on, I brushed it to the back of my mind.

Over the course of the last three years, my outlook on my life, my disease, my pain, and my mortality, has all changed. I’ve had a lot of bad days, and a few bad weeks in there too, but only one or two bad months, one of which I’m currently living. What makes a bad month for me is an accumulation of bad days that string together, sometimes only separated by a day or  two of down time. ‘Down time’ being a day where I don’t have much pain, or I’m able to get errands and grocery shopping done without a struggle, or I can enjoy an activity of old that I haven’t experienced in awhile.

I’m in a bad month. Or rather, in a bad six weeks…as this one started early to mid-March and we are creeping up on into May. My main caretaker went on a much needed (and well-deserved) vacation last month for a period of 21 days. To get ready for such an extensive time apart where I would have much limited support resources, we planned extensively so I wouldn’t get caught in a bind. However, life doesn’t always follow our plans, no matter how carefully we attempt to execute them…  I did the best that I could with what I was given.

The last two weeks especially, have been really rough, on top of already having this pretty tough month. Not only did I receive a lot of devastating health news, including the possibility of my Lymphoma coming back, and the new diagnosis of lung disease, but I was also in the emergency room two times within a three day period.

The Sunday before last I had a “good day”, in fact you could even call it a fantastic day. I was having a low-pain day, I was fairly mobile, and I decided to attend a BBQ I had been invited to a couple of weeks before. Usually, I tend to RSVP to events as “maybe”, as I don’t often know how I’ll feel on the day in question. I hate feeling flaky, and not showing up when I say I will, but that’s just the nature of the beast. Most of my friends and family understand.

That Sunday I enjoyed myself more than I have in a long time. The food was good, and since I’d felt well enough to cook something to contribute to the potluck, everyone was happily gobbling up my Baked Brie with Figs.  I even felt mobile enough to go for a swim in their pool, which felt wonderful on my tired limbs. And despite having a great time and not wanting the day to end, as a responsible ill person, I left early on and was showered and in bed by 8, looking forward to ending my great day with an even greater night of sleep.

Except… something weird happened in my sleep.

I woke up the next morning with really sharp back pain. Not lower back which was common, or upper back which could affect my shoulders and neck at times. But mid back on the left side. I felt the pain as soon as I woke up, and even had a pretty tough time getting up out of bed. I figured I must have pulled a muscle the day before and hadn’t realized it. The pain was in such an odd spot that it had to be muscle or nerve related right? So, I just tried to take it easy even more so over the next few days, not wanting to aggravate it, figuring it would heal eventually.

But by Wednesday night the pain had become much worse, and I started to suspect that it might not just be a pulled muscle, perhaps I’d slipped a disc or pinched a nerve. Thursday morning I had an appointment at the hospital to get a biopsy, we were finally going to check the enlarged lymph nodes under my left arm. I called my PCP and asked if she could order me an X-ray after my biopsy. I was already at the hospital, why not kill two birds with one stone and get it checked out? Being the incredibly thorough doctor that she is, my PCP suggested I go to the ER right after my biopsy where I could be seen and treated quickly.

Since she called ahead, the ER knew I was coming on the insistence of my doctor and so I was treated fairly, and not like a drug addict which is more than often the case (but that’s another blog for another day). I was poked and prodded, an IV line put it on my left arm, and a lot of blood taken for lab tests. I was even asked (politely!!) if I’d like something for the pain.

‘Um, do I want to be given relief instead of this sharp painful stabbing feeling in my back..? Yeah, I would…duh!’

After four hours of blood draws, x-rays, a CT scan with contrast (that’s when they pump you full of Iodine and it feels like you peed your pants), and an ekg, they finally had the results. I’d broken my ribs…in my sleep!!

SAY WHAT?!

I guess due to my severe Osteoporosis, things like this can and will happen. As far as they can tell, I twisted my body in my sleep during the night and that put strain on my already thin and brittle bones. I fractured my 7 & 8th rib in the back on my left side. And you know what you can do to fix that? Absolutely nothing. Nothing. I mean you can’t put your back in a cast. So you basically just have to be careful and let it heal on its own. For a healthy individual, that’s 4-6 weeks. For a patient with severe Osteoporosis… try 4-6 months. JOY.

So, I went home. No pain meds work on me at this point in time, so I have to deal with this pain on my own. Great. Needless to say, I was pretty upset by the whole ordeal. But, these are things I’ve learned to live with. My disease doesn’t quit. Each day I’m faced with something new.

And that couldn’t have been more true for me when I woke up two days later in even more pain. But what was unfathomable, was that my rib fracture pain had SPREAD. I was now feeling that same fracture pain on my side and front of my ribs. How could that be? Fractures aren’t contagious! The pain doesn’t move along the rest of the rib!  Or did it?

So back to the ER I went. This time, it was strangely empty and I was seen, treated, and dismissed in less than two hours (again, another story for another blog). Not wanting to expose me to too much damaging radiation, only my x-rays were repeated, and not the CT. In the course of two days, TWO DAYS, my Osteoporosis had managed to re-fracture an old healed rib break that I’d gotten in 2005 in a car accident. The ER doctor told me that Osteoporosis can aggravate healed fractures and basically cause them to break again. In two days, while all I did was rest my bones, my body managed to fractured entirety of my left rib cage.

This wasn’t just a bad week. Not even a bad month. This was my life. This is my life. I can literally not catch a break in my disease. Or rather I’m catching all the wrong kinds!

I cannot fathom how a body can be this self-destructive. I don’t understand why this is happening to me. It’s literally like I’m being punished for something that I haven’t done. In response to my enjoying just one day off from a constant assault of pain and sickness, my body broke itself into pieces while I slept and dreamt of a good day.

Stay positive?

Stay happy?

Stay strong?

HOW?

Please tell me how I’m meant to stay strong when my body is destroying itself on a daily basis, and I’m struggling just to catch up?

Tell me how. Tell me why.

 

 

If you would like to help support my struggle with this vicious disease, please visit my page. Thank you to all my readers and supporters.

 

It’s not a competition

It recently occurred to me that a lot of my friends and family often belittle their own health issues in front of me out of guilt. I’ve done it in the past as well, so I recognize the action. You’re talking with someone who has a long term condition like diabetes or cancer, and maybe they experience constant migraines or something similar, and you start complaining about an awful headache you got the other day. Suddenly you clamp your hands over your mouth, mortified that you’re complaining about a headache to someone who not only experiences them all the time, but to an excruciating degree. It happens. We’ve all been there.
But only until I was the one in the chronic illness drivers seat did I realize that I shouldn’t have ever had to feel guilty for that headache, and neither should you. It’s not a competition, and I’m certainly not winning just because my illness is worse than yours.

Everyone who knows me, knows that I’m sick. And knows that I’ve been sick for quite a while now. I don’t hide my disease, nor my symptoms. Everyone knows that I suffer from chronic pain on a daily, if not hourly basis. Those closest to me know the severity of my disease and the toll it takes on my body. But just because I suffer, it doesn’t mean I think I’m the only one. I know there are hundreds of thousands of people out there that are sick, suffering, even dying. And you don’t have to be suffering or dying to want a little sympathy either.

Having a really bad cold, with stuffy sinuses and sneezing and coughing, sucks. Having a really bad headache sucks. Having a sore throat totally blows. Getting the flu is a nightmare. Cutting your hand or cardboard stings and is awful. I’ve had all these things happen to me and I know how shitty it can be. Life just hits us with a bus sometimes and it’s unavoidable.

So don’t feel like you have to hide your pains or illnesses from me because you think I get it worse. It’s not a competition on who feels more awful. Please don’t hide how you feel. Share your aches with me. Tell me about that awful paper cut. Let me support you, and make you a cup of tea for that terrible headache. We all get sick, and hurt, and feel crappy at times. You are not any less important because you don’t have a chronic illness and have 14 doctors on speed dial. A lot of you support me when I’m down and out, which is more often than not. Let me help you when you’re not feeling so hot either.

It’s not a competition. It’s just life.

If you’d like to help support my medical efforts and financial struggles, please visit my donation fund. All help is appreciated…

Christine Lilley’s Life Fund

Friday Morning

3:49am
My cats are meowing. I can’t see them because my eyes are still closed, but I can hear them. Please, please, please don’t be a bug. I open my eyes at the exact moment that my body registers the pain.
OMG. This is a 15/10 at least.
Damn, I need to pee. This is going to suck.
I push the bed covers off with the back of my hand. My fingers are swollen and stuck in the position of a claw. They look deformed and I shudder at the thought that those days are fast approaching. I push off the bed and cry out in pain as my knees scream. I hobble to the bathroom and take two deep breaths in before sitting on the toilet seat. My knees are purple and huge.  It takes me ten minutes to psyche myself into standing up again. The tears fall as I hobble back to bed.

4:05am
I’m going to take my morning meds now. Maybe they will kick in while I finish sleeping and I’ll wake feeling good. Maybe.

5:30am
Aureus is on the bed next to my head, meowing. He wants his morning can of wet food I assume. I open my eyes and the pain is still there. Sorry Kitty, Mom isn’t getting up for that just yet.

6:18am
I need to pee again. Damn it. Pain is still bad, maybe a 13/10. Why haven’t my morning meds kicked in yet?
I stumble to the bathroom, crying out in pain as I sit on the seat. This time though, I can’t get up. The pain is too strong. I sit there for several minutes, breathing in and out, in and out. I try to stand up and come crashing down.
Tears.
I lean my forehead against the wall, taking deeper breaths, knowing I’m just going to have to get up, no matter how bad the pain is.
I stand. I scream.
God I hope my neighbors didn’t hear.
This time I hobble to the kitchen and plug the cats water fountain in. I fill their bowl with dry kitty food and hobble back to bed. I fall in, not bothering to cover myself and pass out in exhausted pain.

7:58am
My body must know I can call my Rheumatologist now, his office opens at 8. I must see him today. Only he can tell me how to get through this pain.
The nurse on the phone tells me he has no availability to see me. I ask what to do and she says she doesn’t know.
Well, thanks, that’s very helpful. She says I can come next week. Well, gee, I hope I’m still alive next week. Because at this moment it feels like my body is shutting down.
I take another 2.5mg of Prednisone. I just need to be able to move. Please, please kick in soon.

8:30am
I’m so thirsty. I hobble to the kitchen but I can’t open the fridge door. The magnet is too strong. Instead I attempt to open a bottle of water from on top my fridge instead. I can’t. I have no strength in my fingers. Shit.
I go for the fridge again. Screaming in pain and frustration I get it open. With two hands I pull the carton of milk out, praying it doesn’t slip between my grasp. I pour a glass of milk and get a straw to drink it with.
Finally. Thirst quenched.
God I’m hot. And itchy. I wonder if ill be able to wash my hair in the shower today. My hands still stuck like claws. It’s hard to squeeze the shampoo bottle on days like this.

9:05am
I must have fallen asleep again. Why does everything hurt so much? I have to pee again. My knees are so mad at me.
Tears.
My cats meow at me from the floor. I try to stand but fall back down on the toilet seat again.
Tears.
I need help.
This is too much pain for me to handle.
I need help.

If you’d like to help me, please visit my campaign page at:
Christine Lilley’s Life Fund

To ER or not to ER, that is the question

One of the worst parts of being sick sometimes is knowing whether or not I’m having an emergency. Because I have such a high pain tolerance now due to my Rheumatoid Disease, it’s hard to judge if my pain is on an emergency level or if I should just suck it up. Years ago, I had to be in a lot of pain to go to the ER because it meant I was going to get a huge hospital bill. Having insurance through the state gives me leniency in that department but I still don’t want to go if it’s a waste of time.

A couple of months ago I was having bad abdominal pain and decided it was an emergency. While the reason I went in did not pan out to more than just pain due to my disease, one of the many scans they gave me was how we found the cancer. And today my PCP joked about how every time  we go to the ER we find a new diagnosis. That’s an unfortunate reality to be sure.

So is my strange back pain right now cause for a trip down the road? My PCP would want me to do a checklist to see what’s definitive.

Shortness of breath?

Sharp pain in abdomen or side?

Fever?

Nausea or vomiting?

The list goes on.

So… am I having an emergency? Not sure… And even Hypochondriacs Are Us aka WebMD isn’t very helpful today. It hurts, I know that. But does it hurt more than my RA? Can I wince my way through it?  Not sure…

I just hate to go in there and waste time if there are people there with legit emergencies. Like car accidents, broken bones, heart attacks.

I guess it’s a waiting game. My favorite type of game… ugh.