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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Support Isn’t A Competition.

I read a great quote online yesterday, which prompted me to write this blog today. It was one of those posters that Word Porn posts daily on my Facebook feed, and instead of scrolling down past it like I do usually, this one caught my eye. Here it is…

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This one really spoke to me, because I feel like I deal with this on a regular basis due to the nature of my disease. And this particular statement I feel like I’ve literally been living.

Rheumatoid Disease has plagued my body for three and a half years now. Endless years, it seems sometimes, that I’ve dealt with this indescribable pain, whom no one can fix. I’ve tried so many medical treatments, pharmaceutical and homeopathic. I’ve attempted every fad diet out there, all proclaiming to be the “cure-all” for my disease. You name it, and I bet I’ve tried it! Even going as far as using essential oils, sleeping with healing rocks, and attempting to meditate the pain away.

I have spent countless hours in frigid medical offices, waiting for yet another “check-up” appointment. Or another visit where my doctor will inform me that now do I not only have the worst case of Rheumatoid Disease for someone my age in Hawaii, but also of all their colleagues’ patients on the mainland as well. Gee, that’s some great news, I’ve always wanted to be the best at something. I could never have imagined it would be concerning a debilitating, incurable disease. I’m so lucky!

I’ve spent more time with my Rheumatologist and PCP than I have with some of my closest friends. Truth be told, that could also be said for most of my family members as well. And I’m not saying that’s something bad, it’s just my reality. My week’s schedule is usually broken down in three main priorities: first comes doctors appointments, then work related training/events/prospecting, then family time, and friends and social engagements can be worked in after that.

If you really look at my priorities, you can also see how important my health is to me. I’m 34, about to be 35 in one month. I don’t want my disease to define me, and to accomplish that, I need to work hard at finding a way to coexist with it. I have to figure out how to live with my disease in a way where it doesn’t rule my life and dictate who I am as a person. And to do that, I am 100% committed to finding a medical treatment plan that works for me.

My second priority is my financial independence. I now receive a small monthly siphon from Social Security, but it is nowhere near enough to live off of. So I had to find a part time job that I could do without hurting myself, or worsening my disease. That came in the form of direct sales with Rodan + Fields, which fortunately fits my needs perfectly. I work from home, hell, most days I work from bed, and I make my own hours. I’m my own boss, and have no one above me causing me stress. It’s almost completely social media and word of mouth based, and works perfectly with my retail background. I’ve only just started, so I’m not making any real money yet, but I will in time, and I’ll be financially secure for my future. And the best part is that I love my job. I love helping people, and making them happy. So, really, it’s a Win/Win.

My third priority is my family. No matter what is going on in one’s life, it’s always nice to have family to fall back on. Spending time with both sides of mine (I was a child of divorce, so I get two), is something I try to make time for regularly. Now, I’m not saying that my family relationships are perfect, far from it. But at the end of the day your family doesn’t change. You don’t get to swap them out if you have a fight, or don’t see eye to eye. With family you’re committed to the good, the bad, and the ugly. And I have dealt with all of those memories from both sides of mine.

Although, this is where the aforementioned quote comes in to play.

I understand that dealing with people with disease is hard for some. Knowing a friend, or even an acquaintance, who is going through an intense medical situation can be tough. Even dealing with a lesser medical situation, like maybe reoccurring headaches or acid reflux, can be hard for some to process. We don’t know how to react, or how much empathy or sympathy to have. It’s daunting for some people to deal with those who are sick. And even more so if we are talking about incurable diseases, cancer, or any other life threatening medical issue.

In my own medical journey I’ve actually lost friends because of my illness. Not because they were scared of “catching it”, Rheumatoid Disease isn’t contagious. But mostly because they were at a loss of how to handle it. They didn’t understand the disease, and why I was so sick, and why after all my treatments I wasn’t getting better. And instead of asking me about it, and attempting to understand what I was going through, or asking how they could be supportive, they instead pulled away. Yes, it initially hurt my feelings, but at the end of the day I have learned that I’d rather surround myself with supportive people. People who want to be in my life, not those who feel they have to be. I think that goes for pretty much everyone, healthy or not.

I’ve personally found, though, that support can be a double-edged sword. You would think that anyone going through an intense illness, like mine, would welcome support of any kind. Through the assumption that any help at all is still helpful, right? WRONG. Support and help is only helpful if it comes from a good place. However, in my personal experience, support is often not without strings.

I welcome and appreciate any kind of support towards my person, my illness, my newfound career, and my journey in general, as long as that support is given freely. What I mean by this is that it’s given without expectations of a reward, or a guilt-laden reciprocation. Just like the quote says, “I don’t engage in acts of kindness to be rewarded later,” I don’t want to receive support with strings attached. An example of this might be a ‘You scratch my back, I’ll scratch your back scenario”. Or making comments like, “Well I helped you with that one thing last week, so….”

No one wants to feel like they’re being used. But expectations put on support is just that. It’s support with strings attached, and I don’t want any part of that. If you need help with something, just ask. But thinly veiling it as “support” basically makes the receiver feel like shit.

If you want to do something nice for me, or anyone, then do it. Not to get something back from it, or to make yourself feel better by showing others how “supportive” you are. If you want to be seen as a good person, then do good things. And leave it at that. Be kind. Be generous. Be good. Not for others. For YOU.

Giving me support in my illness isn’t a competition on who can do it better. The best way to support me while I’m going through this hell is to just be there. Ask me how I am. Ask me if there’s anything you can do. Ask me if I need help. Ask me if I need a ride somewhere. And listen when I tell you. Listen to what I’m saying to understand, not to reply.

I feel like everything has become a lie recently. Like suddenly I’m this vessel to be used to make others look and feel better. Like “Hey, did you notice, I’m being supportive?” Or, “Look at this picture I posted of me being so supportive!”

Supporting me isn’t a competition. I’m a human being, dealing with an incurable, debilitating disease. I’m just trying to make it through each day, each week, and each month, without landing back in the hospital. I just want a life I can be proud of, and get up for each and every day. Want to feel good about yourself, too? Do something good without thinking about who it benefits, and I’ll continue to do the same.

 

 

Mother’s Day for the childless

Today is Mother’s Day.

This morning, as I have done every single other Mother’s Day since I was old enough to understand, I contacted my mom and wished her a very special day. Then I called my step-mom nd wished her a happy day. And finally wrote a post on my social media pages to all the fabulous moms I know, wishing them a Happy Mother’s Day.

And then I sat back against my pillows in bed, and cried. I’d barely put my phone down on the bed before the tears spilled over my lower lids, streaming down my cheeks.
I should be used to this. It’s the second year in a row now that I’ve had to deal with the inconvenient truth of my predicament. It’s not like Mother’s Day is the only day I think about the fact that I can never have children. I think about it all the time.

I think about it whenever I see kids with their moms, especially when it’s little brunette girls that remind me of myself. I think about it when I hear a baby cry. I think about it when I see children’s clothing in department stores, and advertisements on tv for toys. A day does not go by that I do not think about the fact that I can never give birth myself.

Unfortunately, the nature of my disease and it’s severity makes it extremely hard for me to healthily have a child. Can I technically give birth? Yes. Should I? No, I really shouldn’t. Could it harm or kill me? Very much so, yes.

See, the issue is the chronic pain. I could have a child normally, through childbirth, but only if I go completely off my pain medications. Also my Osteoporosis medication, and depending on what I’m on for my Rheumatoid Disease, perhaps that as well. If I have no drugs in my body, then of course I could technically have a regular pregnancy. Technically, being the key word. See, if I go off all my medications then I would be bed ridden, unable to move at all due to excruciating pain that never ever ends. I would be subject to many illnesses because my immune system would crash, and because of the immobility I wouldn’t be able to exercise at all. So really a “healthy pregnancy” would not be on the table.

I’ve read that for some people with my disease, or ones like it, have had regular pregnancies and or childbirth because their diseases went “dormant” for 9 months. But since this hasn’t been medically proven, and has only happened to a small minority of patients, I wouldn’t put my body in jeopardy like that on the hopes that I get “lucky”. I’m never the lucky one. In fact, most of the time I’m the anomaly that gets all the weird and rare side effects. The point is, I wouldn’t put my body, or child, in jeopardy like that.

I met a girl a few years ago that had a child, whilst having a pretty aggressive strain of Lupus, another autoimmune disease that affects the whole body. She was lucky throughout her pregnancy, being one of that minority grouping whose disease went dormant for the duration. But her child was born with scales. No, not the fishy kind you’re probably thinking of, but more of a horrible skin condition. The baby was covered with patchy, flaky skin, that was red and rash-like, covering her whole body. Luckily, it wasn’t a fatal condition, but the baby had to be kept in an incubator for months, enduring multiple daily tests and treatments. The baby was able to go home after four months, and luckily there wasn’t too much scarring, but… to put your child through that.. I mean I know doctor’s must have warned her about complications of pregnancy due to the nature of her disease.

I guess it’s all about personal choice. But for me, even if I was willing to endure unending excruciating pain, and had the reassurance that said pain wouldn’t kill me, I would still not risk the health and life of my potential child. That’s my choice, my right. It sucks, but it is what it is.

Now, yes technically if I really wanted to be a mother there are other options available to me. I could adopt, though it’s doubtful with the severity of my disease that they would choose me as a capable parent. I certainly couldn’t raise a child on my own, so I would need to be married, and have a support system. Surrogacy is also an option, but I think it would be really difficult for me to watch someone go through the pregnancy of my child. And there’s still the issue of needing a husband for love, support, and of course, sperm.

Plus my clock is ticking down. No, not that one. Not the baby clock. That one has been ticking on and off since I turned 25. And two years ago I even went to a fertility specialist to see what my options were regarding my disease and age. I know my options, very limited as they are. I mean my life clock.  A couple of months ago I went through a patch of heavy depression. I was hung up on the thought of how much longer I had. My disease, being so severe and chronic, was starting to worry me in the sense of time I had left. And so, despite the strong objections of one of my doctors, I set out to figure out an estimate of my time left on earth. Through research, my medical records, and the testimony of a very reluctant doctor, I was given an unofficial “estimate”.

I had a nervous breakdown and sobbed for a week.

Well, having a child of my own was now definitely off the table.

I would have to be accepting of my adorable kitties being my babes. Not hard, since I love them as much as I love my human family. And in a sense, I really am a true mother to them. I feed them, clean them (or rather their bathroom), play with them, nurture them, and give them unending love. I’d starve before I let them go hungry. I put them first whenever making decisions about going out of town or staying with my mom. They really are my children. My furry feline children.

Although, they can’t really understand what I’m saying most of the time… And my Mother’s Day present this morning was a pool of vomit next to the stove. Thanks, Aureus, you’re a gem. But gosh do they give great cuddles when I’m sore or sad. Cats are empathic, and give love and comfort when they feel it’s necessary. Which for me is kind of on a daily basis. So they are great for me. And regarding Mother’s Day… well, I just have to keep my chin up and remember that while I may never a be a mom to a child, I am a mom to Astrid and Aureus.

Also, I am blessed with having the unending love and support of my own mom. A woman who gives her love openly and freely. It’s never a strings attached situation. I don’t ever have to “owe” her anything, and she has never once told me that her love and kindness must be “earned”. She never makes me feel bad about myself, or treats me with disdain. She is a wonderful mom. She is what moms should aspire to be. I love her. She is a great mom and a wonderful grandma to her grandkitties.

Happy Mother’s Day to mothers of all caliber.

 

 

 

Thank you to all those who read my blog and support me in my journey. Please visit my webpage to lend more support, http://www.gofundme.com/sixthousandsteps

 

 

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.

 

No, Not Really

“At least you’re lucky to be alive.”
“You should feel better that you get any medications at all.”
“You should be grateful for the air in your lungs.”
“You’re lucky you have a roof over you head and food on the table.”
“You would feel better if you pushed through the pain.”
“If you lost the extra weight, you wouldn’t be as sick.”

NO, NOT REALLY.

This morning I woke in just enough time for my head to make it to the toilet. As I watched the yellow bile expel from my body, in painfully violent waves I might add, I can promise you that I wasn’t thinking “I’m grateful”.

When I looked into the mirror after the fact and saw my paled skin, the dark circles under my eyes from painful sleepless nights, my double chin and fat cheeks known in the medical world as Cushingoid, a result of long-term steroid use; I did not think “I’m lucky to be on these medications” and “surely if I went on a diet I’d be cured in no time”.

I’m sick.
I’m dying.
I wonder if people in my life actually realise that fact, or accept it at all.

This week I found out that my insurance company decided to no longer pay for my treatment plan. A plan that my doctor argued was integral in my survival and chances of remission. When I called the company angrily to ask why, I was given a lame and generic answer, their statements only divulging that they deemed my treatment “expensive”.
So what I hear you saying is that my life isn’t worth the treatment that will save it? Gee, thanks Big Pharm, kinda always thought you needed LIVE patients to make money off of.

Do I sound angry?
It’s probably because I am.

I am so tired of being in pain.
Of waking up every morning wondering what my body has in store for me. Will I be nauseated and vomiting? Will I be in so much pain that I can’t move?

Do I feel lucky?
No, not really.
I feel anger. Rage. Helplessness.
I feel alone in a sea of individuals who think they know exactly what I’m going through.
They don’t.

Every day I hurt.
Every day I cry.

You think you know what it’s like.

No, not really.

I get scared too

Wednesday was a rough day.

I don’t often have really bad days. Sure, I’d say two out of five days can be bad for pain. Really bad, like not get out of bed til mid afternoon bad. But the odds are that I’d more likely have a good one. Most days I wake up in pain, but it’s manageable..

I open my eyes and I assess where it hurts. Hands? Feet? Wrists? Then I take inventory of what needs immediate help and what can wait. Usually I need to run my hands under piping hot water to loosen them up. Then my day can begin.

Wednesday was a bad day. I knew before I opened my eyes. In fact I knew at about 3am that if be having a bad one. Lately, I’ve been waking up between 2-4am. It’s not that I’m fully awake and can’t go back to sleep. I’ve just been waking up knowing. I wander through my small apartment checking on things, making sure doors and windows are locked, rubbing my cats bellies, drinking some water, before going back to bed.

Some days I go back to sleep. I doze in and out for a few hours and then am able to do things through the day. But not that day. I knew the minute my body was awake it was going to be rough. But the good news was that it was an infusion day. That meant I’d be getting the good meds. True, not in the way I’d like, but I would feel better eventually. And I’d keep feeling better. For at least a month.

I should have known that my bad pain day would run off into everything else being bad. The infusion clinic was a mess. I guess they were short staffed, but no one knew what was going on, or who my nurse was going to be. I should have taken it as a sign, but what could I have done. I couldn’t come back another day, I was going out of town on Friday. Wednesday was the only day, because I usually needed one day to recover. Usually.

I fell asleep as soon as the IV was in and I took my usual dose of pre-chemo Benadryl (to ward off any weird side effects). The plan is that I usually fall asleep during the administering of benadryl and I wake up three hours later as they are taking my IV out. Painless. 

On Wednesday, forty-five minutes into infusion I woke suddenly. Mom was sitting next to me looking at the heart rate monitor with a concerned look on her face. I asked what was wrong but she got up to find the nurse. Apparently my pulse had dropped very low. The nurse had me take a few deep breaths and we waited as the rate on the monitor went back to normal. But that’s when my left foot started to itch. The whole underside felt like I had an isolated attack of chicken pox. Mom took off my sock and started scratching, but then suddenly it was my whole left side. It was awful. There were no hives, no rash, just uncontrollable itching. And then it was like an elephant was sitting on my chest. All I could think of as the nurse frantically called my Rheumatologist was,

“This is it. I’m going to die in this hospital.”

Because what else goes through someone’s mind when something goes wrong in a hospital. That’s where you go to get FIXED. Everything suddenly felt clouded and fuzzy, although maybe that was me just losing consciousness… But for a moment I wondered if I would wake up if I fell back asleep. And then I fell asleep…

I woke three hours later to my infusion finally being over. Instead of the usual 2-3 hours, I had been there for 5 1/2. It was the scariest time I had spent there. Ever.

I was nearly delirious leaving the hospital. I had cotton mouth. I was dizzy. I was hot. Everything felt weird and unfamiliar. Mom kept asking me questions but I couldn’t hear her. It sounded like the mumblings of an adult from every Charlie Brown cartoon I’d ever seen. I was confused. Lost. Scared. The sun seemed too bright. The noises of the hospital sounded like shouting. Why was everyone shouting? Mom looked confused. She didn’t understand what was happening to me. I jumped at the touch of her hand on my arm leading me to the car. It felt like my fibromyalgia was back. My skin tingled, hurt even. I was scared. Of everything.

I guess people don’t realise that it can happen to me too. Just because I go through the motions, live each day as I need to, it doesn’t mean I don’t get scared. In that hospital bed I wasn’t sure if that was my end. If my time had come. Luckily it hadn’t. But the point is I didn’t know that.

I get scared. I’m human.

I get scared too.

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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.