the aftermath: B[e] positive. give HOPE.

One year ago today, I was in the emergency room receiving a blood transfusion.

A year ago Tuesday, I received my final blood transfusion of 2013, following surgery that [finally] removed the uterine fibroid that had repeatedly caused my hemoglobin [and blood volume] to drop, leading to the 10 units of red blood cells I received in 2013.

This coming Tuesday will be 365 days after I went from crashing in the emergency room, being taken to resuscitation for hypovolemic shock and rapidly being infused with IV fluids, and then into surgery. And it’s a day I am trying to reclaim as my own. Nearly to the hour of when I was taken to resuscitation, I will be once again on the donor end of the process for the second time in my life. And now I don’t just want, but need, to be on that other side again. To bring that hope full circle. To reconceptualize that surreal feeling of knowing the only reason you might live, is because someone who has no idea who you are or what potential there is for your life if you life—when you live—wants to be the difference between hope and the alternative. I need that day to no longer be about me, no longer to be about that I lived, but be reminded B-postive is far more than my blood type, it’s my nature—and because of these things, someone else will experience hope.

As difficult, as messed up as last April through September were, in many ways, it was nearly as hard as the after has been. And once I make that first blood donation, take that first step, I move forward into further reclaiming my life. The first year is a year of waiting—the aftermath is always about waiting. This time, there is less for me to wait for in anticipation. Unlike 2013, a year at risk of abandoning every plan because maybe my body had other ideas for which there was no plan, I was able to embrace 2014. I actually started embracing 2014 in December, when I finally started getting my head together following the aftermath of my five months of hell—which took two months in itself. I think this is probably a process that, though extremely variable in speed, is probably true for most blood recipients: whether you are receiving blood because of “pure” anemia, or cancer, or following a traumatic injury, or any other number of conditions, the aftermath is similar—we remain in limbo, waiting for a potential sign of recurrence, or adjusting to life as it continues on a totally different path than anticipated, yet we owe the fact that we are alive to a person or people we can usually not thank ourselves.

My limbo, is not knowing what’s going on inside my body: an impossibility without medical imaging. I had a follow-up pelvic ultrasound done in early July. I spent a bit over a week, part curious and part agonizing, about the results. I phoned Alaa’s office—Alaa, who had taken me as a patient when my own primary care doctor refused to refer me—and said it was okay for his staff to leave the results on my voicemail. They actually did. July 14: “Dr. Awadalla said it was an excellent report, only a tiny 1.2 centimetre fibroid noted—otherwise a very good report.” That small fibroid, dependent on its location, could be where this story started: or, it could stay that size for years, and remain totally innocent. I am now simply trying not to think about it and live my life—even more true now after phoning last week to figure out the plan. As I anticipated, I simply continue what I am doing. I am not going to get to come off of oral hormone treatment (the inappropriately titled, in my case, birth control pills) anytime soon—I could be on these pills at least another 20 years if nothing changes, and as backward as it seems, clearly I hope this is the case. Yet, if anything does change, I go in to see him right away (and I’m sure they will get me in right away—they called me twice last week to tell me what the plan was, and the second time was at 7:12 PM) and we discuss probably putting a hormone intrauterine device in (specifically, the Jaydess IUD) to, I assume, better target the hormones. So, some of the lingering anxiety has been eased, because I know that getting taken care of isn’t just a front anymore—I know Alaa cares, like all doctors should. The psychological aspects of much of my experience in 2013 is far more of a burden than the physical aspects are: doing what I can, having a team that engages with me as they can to address me as a whole person, is what makes the difference between using the (sometimes hidden) gifts contained in my transfusions, my team, my experiences… and wasting them.

And in this, also, is my hope. The hope that is only alive in me, because I made it through 2013, because of people. 

If you are an eligible blood donor, please consider donating blood with me on Tuesday, like my friend Heather (who is not even in the same country as I am, so no excuses :]), or any day soon. If you are not an eligible donor, consider volunteering at a nearby blood donor clinic for a few hours: you can still make a donor’s day by being that person to hold their hand through the needle insertion, or being the awesome person hanging out with the juice and cookies afterwards, or providing a financial donation to support the work that organizations like Canadian Blood Services, Hema-Quebec, and the American Red Cross do to help people… like me.

I’ll even buy you a cupcake next time I see you.

Since there are few other ways I can show my appreciation of your gift to others—because that gift is far beyond time or blood or money–

It’s hope.

“i’m moving forward now: the thought of a ghost brought me to life”

–i swear this place is haunted, a skylit drive.

It’s been four and a half weeks since I last blogged. Apparently losing a week of your life/near death experiences suck a lot more time out of life than just that one week.  For the record, I am staying more-or-less in-tact academically which is [very] surprising. I only needed to get one deadline pushed back, which was a deferral on my Sport in the Ancient World midterm. Six extra days to work through the things I missed meant I got a 78% on that test, which was much better than I’d anticipated even had I not gotten sick. I’m sitting at 100% in my Developmental Studies class (SERIOUSLY.) and got 63% on my Disability Studies paper (I am fully intending to argue that one).  As soon as I got back on my feet, I had to start drowning in school again. I had a full three days of all day work and nights till 3 AM on the two aforementioned papers that were the same week as the Sport in the Ancient World midterm was SUPPOSED to be (had my amazing instructor not granted my test deferral I’d have been screwed).

Other than academics, it’s been a hell of a few weeks. Two of the chaos producing things are so worth it: getting my Special Olympics season off the ground (six confirmed athletes, two unknowns, two coaches and five program volunteers: I need more athletes!) and planning a Team Asthma event for Sports Day in Canada. Things are fortunately falling into place but I now have five weeks to promote this event and get things off the ground. It never stops (thank God).  One of the two other chaotic things, however, was not anticipated and not a welcome situation, and I still have yet to figure it out.

I saw my primary care doctor two weeks after surgery. To say it sucked would be an understatement, and I am looking for a new doctor. To start, we discussed nothing much relevant to my post-surgical state–had I not been as angry as I was, I’m sure we wouldn’t have discussed it at all. I went in and tried to stay civil, and asked about flu shots. Flu shots are civil topics of discussion. I then asked if she would refer me to Alaa, the doctor I saw at the hospital who did my surgery. Through the whole multitude of gynaecologic related shit, my gynaecologist had been very available and more than happy to see me any time I needed–what he wasn’t, was action driven. He also had the ability that is probably very helpful in dealing with pregnant ladies to make a person very calm (and perhaps he should reconsider a career in something like criminal negotiation because it’s near impossible to get mad at the man), which makes it a bit hard to get mad at a person. However, he also dismissed my questions regarding the fibroid, saying that it was small and shouldn’t be causing my problems. Considering under his care I received multiple blood transfusions, that in itself should be enough to warrant a referral elsewhere. It wasn’t, apparently. My primary care doctor refused to make the referral until she “receive[d] the pathology report indicating [I] need ongoing care,” but apparently I didn’t have to see my old gyn again if I “didn’t want to”.

This is where I lost it on her. “I don’t CARE what some report says, I WANT ongoing care. He was apathetic towards finding the root of the problem from the beginning, and even once it was evident refused to deal with it and book surgery until my mom called him. That’s not okay. This time I almost fucking died. I shouldn’t have to spend ten hours in the ER prior to going into hypovolemic shock less than two days after a blood transfusion, and require resuscitation before I get proper care. How is that acceptable? That’s absolute bullshit.”

That about ended the appointment. I can’t say she really responded to any of it, but it certainly didn’t get me a referral anyways. I briefly discussed the weird inspiratory pain I’d developed following surgery (I was betting and she agreed that it was just a muscle strain from coughing) and requested to go for a chest x-ray to rule out anything bizarre–honestly, she refused, and asked about pain killers at which point I lied and said I’d tried the go-tos (I’d really only tried Naproxen which did nothing), telling me “Take two extra strength tylenol every four hours for three or four days–if it still hurts, come back in and I’ll send you.” Seriously? Not going to happen. Why on earth would I OD on OTC pain meds for really minor pain?

I got a requisition for blood work, but I left without booking a follow-up appointment and hoping I never had to go back in there. I got a call the next day saying my hemoglobin was 93.  The downfall of chronic disease is I need asthma medicine to live–and I kind of need a dealer.

—–

Given the inability to secure a referral from my doctor, I called Alaa’s office myself the next day. I left a message not anticipating anything, explaining who I was, that I’d seen Alaa in the hospital and he did emergency surgery on me, that my primary doctor refused to make me a referral, and that I would really like to see him for ongoing care.

Two hours later I was shocked to see “DC OB/GYN” pop up on my caller ID, saying “Dr. Awadalla would be happy to see you for follow-up and ongoing gynae care.” I have an appointment on Tuesday.

I began the quest to find a new primary care doctor, which has been quite futile. I have a bit of a deadline of December 5th [when I apparently long ago booked a follow-up appointment] unless Alaa or my psychiatrist will refill my asthma meds for me (ADHD meds appointment with a side of bronchodilators?).

—–

Last week, after the appointment being pushed off for nearly a week, I saw my old gynaecologist. Ready to give the man shit except, damn, he’s too nice.

“So, they removed a fibroid, eh?” I told him he had certainly been informed of it.

However, he gets huge props for the fact that the second question of the appointment, which certainly made me soften a bit: “Is Dr. Awadalla taking over your care?” When I said yes, he replied “He’s a very good doctor.”

“Yeah, I really like him.”

At this point I had to start answering him in more than a few words. He, I swear to God, asked “Have I seen this ultrasound? Who ordered it?” I reiterated that he had seen the ultrasound as both myself AND my mom brought it to his attention. “A submucosal fibroid–in over thirty years of practice, I have never seen that type of fibroid in a young person–they’re rare.”

Then, he apologized.  He apologized more than once. If you are going to majorly fuck up despite being a kind and skilled person, there is no way you can fix that: a sincere apology, however? It’s as close as you can get sometimes. He told me once again “I’m sorry we put you through all of that”, and I could genuinely tell he did feel really bad about what had happened–what he had missed, what he had overlooked.

“I accept that. But the only reason I came in today was so that I know that you know exactly what happened: so that you realize a week after you told me I didn’t have to come back for six months I was in resuscitation for hypovolemic shock. It’s not okay: it may not be the typical, but it happened–I’m proof of that. So next time you have a young person in here, presenting like I did, please consider it. Because I don’t want anybody else going through the hell that I had to go through.”

With that, we left the room.  And I even said “thank you” on my way out.
I booked it down two flights of stairs, finally feeling free.
I dug my iPod out of my backpack, and scrolled through.
freedom is mine, and you know how i feel: it’s a new dawn, it’s a new day, it’s a new life for me . . . and i’m feelin’ good.
feeling good, nina simone [muse cover]
Shuffle, ever appropriate, interjected:

but i am the reason that i will stay alive […] every now and then, i think about you: it’s bringing me closer to closure–every now and then i know it’s over. […] take everything you need and move on. we are the answer to the broken breaking through–take everything from me: ’cause i’m not dying, no i’m not dying today.

the energy, audiovent

Because never again do I want to be where I was.

the thought of a ghost brought me to life.

I was that ghost.

I’m moving forward now.

i swear this place is haunted, a skylit drive

Here’s to moving forward.

Again.

Always.

“when i think i’m letting go i find my body it’s still burning . . .”

an emergency! / hence the chance to emerge / i’m a seed on the verge / of becoming a tree . . .

[…] most eyes will see a mess / but good things coalesce / when yeasayers can see.

avalanche, sons of the sea

August was apparently too good for a repeat.  Out of the last seven months, I’ve gotten one good one. One normal, healthy one.

Disclaimer: If you don’t like lady bits, or blood, or hospitals, feel free to stop reading right now.  Regulars over here know I’m transparent, and I think this is the epitome of that.  Also, hi family, I swear a fair amount in this post.

At the end of August, my hemoglobin was a beautiful 123. Normal. I’d started having some light spotting after six consecutive weeks on the hormone pills, which my doctor and I agreed was normal–he said if it got any heavier to take a three day break to allow my body to bleed, and then continue, otherwise finish the pack and take a few days off before starting again. He agreed things were going well–he didn’t think the small fibroid we’d discovered via ultrasound in June [and they had failed to tell me about until after my transfusion in July] needed to be removed, and he–at the last minute before I could question why–freed me for six months and slipped into another room.  I left without booking a follow-up appointment. I stayed on the pills. I went on with my life.

A couple weeks later, despite being on the pills, I started experiencing intermittent bleeds that were quite heavy. Most were short lived, some were not. Once again, the advice from my gynaecologist was the same: take a 2-3 day break from the pills, go back on twice a day. Fine. Let’s do this. I had taken my morning dose already, so I skipped the afternoon dose on Thursday, with the intent to go back on Sunday.

By Saturday, I knew things were not passable for “okay” anymore. I also knew that Wednesday, Thursday and Friday. But, I’m also unfortunately enough of an ER veteran at present . . . to know that I was not sick enough to go in and receive prompt treatment. I go to the ER when I am really sick, I do not go there any time before I absolutely have to. My heart rate was high [from anemia/losing blood volume], but I didn’t know how bad my lab values were. I opted to, for the first time, go to Urgent Care. I figured that if nothing else they would refuse to treat me and send me to the ER, or give me some concrete numbers to go off of.

I arrived at Urgent Care with a letter of introduction in my hand explaining my medical history [best choice ever to make that] and a heart rate of 155. I got sent to the back immediately where they ran an EKG, They drew blood. The doctor loved my intro letter, and wandered off with it somewhere.  They hooked me up to monitors and we waited for my labs to come back. Verdict: Hemoglobin of 84–a bit low but nothing dangerous in my mind–and my heart rate lowered significantly at rest and wasn’t sucky enough to visit the ER–the 155 was higher than anticipated, but it did go down once I was laying down. I was sent home with a plan: return in 24 hours for blood work OR if I had even a single episode of bad bleeding, go straight to the emergency room. Due to the past experience with recommendations to go to Health Sciences Centre [my perception: scarytown], we discussed that option with the doctor, who assured us that either HSC or St. Boniface Hospital were good choices–which made me a lot more settled as I am extremely avoidant of HSC.

Sunday

The next morning, that piece of advice proved well. I hadn’t had a good night with regard to the bleeding, but it wasn’t [to me] severe enough to go to the ER in itself. However, my heart rate had not improved. I gave in and said “Let’s go”, and grabbed my already packed bag, intro letter and health card, and showed up at St. Boniface Hospital by 11:30 AM.  I waited in the line for triage for very little time–some very smart person chose to triage the triage line. When I go into the ER, I never really look sick [and I’m always too calm]. As the nurse goes down the triage line, I can see the girl beside me giving me this “you don’t look sick” type look. When the nurse gets to her, she says “Oh, I have a really bad head cold.” The nurse takes a step to me, I tell her my name and respond “I’m having severe vaginal bleeding and tachycardia.”  I’m not even sure what girl beside me thought [or understood] of that, but I know she must have been pissed off when the nurse immediately pointed me the open triage desk!  Once again, with a heart rate of 155, they immediately walked me to the back.

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I got lucky: the ER doctor that shift was the Emergency Department Director at St. B.  Fondly nickanmed “Dr. Business” at that time, he came in quickly and I gave him the lowdown: I’ve had three blood transfusions since May totalling seven units, this is what’s going on, this is why. He, being Dr. Business, immediately called in the gynaecology resident.  IV inserted, blood drawn, EKG done, monitors hooked up, IV fluids rolling in. Within an hour of arriving, I’d been transferred to a more private treatment room, where Dr. Business was too impatient to wait for gynae and opted to call in a nurse and do a pelvic exam himself [for the record, he needed a lot more practice, and I suppose it is fortunate that he got a round of practice on this girl with a decent pain tolerance–granted, I at this point was getting so sick of being in and out of the ER and the inability to live my life that we definitely asked if more immediate surgery was an option–which he did not believe it was].  Within another hour, the gynaecology resident had arrived.

Seriously, I loved this woman from the moment I met her–before I knew how instrumental her role in my care would be. She introduced herself as Stephanie, we did a brief history, we talked smartphones, and she did another exam [which was much less painful than the one an hour before]. She took over from there, got me moved into observation in the back while she figured out a plan of attack.  She agreed that immediate surgery wasn’t going to happen, and I finally had to accept that.

My hemoglobin had only dropped a small amount at that point from the day previous. It was still 82, but because of the bleeding [I was on the pill break at this point to pacify everybody, but the bleeds were still intermittent], it was an option to transfuse if I wanted to. She also repeatedly made the point that “Yes, you do need to take pill breaks, but WE need to support you through them.” I could have hugged her. We together decided to do another transfusion because of the unpredictablity of the bleeds to give me some wiggle room, but she also started me on tranexamic acid to reduce the bleeding, and upped my pills to 3 a day for two days.  I was feeling pretty sick so she ordered some anti-nausea meds [which then took me an hour to get since I didn’t opt in when the nurse offered them and then he went on a break ;). Had I known they would have had to put an extra IV in to shoot the good drugs into me and were just going to give me Gravol, I would have sent my mom down to the pharmacy and not waited an hour–no way was I letting them put a second IV in.

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I got released: Happy I had some fresh blood on board so I’d be feeling better and my heart rate would gradually come back to normal. I was hopeful that the new medication would, after a few days, prove to make a difference and I knew I just had to tough it out until then.

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Monday

Monday was a rough day.  I was really emotionally screwed up and–like the previous Thursday–simply could not cope with anything. I felt sick from the transfusions. The bleeding was worse but not terrible, and by late afternoon, I actually did feel some hope that the pills were working as I read the tranexamic acid worked quickly as I had a few hours of reprieve from how shitty things had been earlier.

11:00 PM rolled round. It was like a switch flipped. I was bleeding much, much worse than I ever had [I pretty much literally couldn’t leave the bathroom].  I told my mom we needed to go back to the ER, and by 11:30 we were in there–I went straight from the car to the bathroom to temporarily deal with the bleeding, then proceeded to triage.

Winnipeg-20130924-00563.jpgTriage was probably among the worst experiences of my life at that point. I’m not feeling good, I’m hemmorhaging worse than I ever have in this disaster, and when i get called up to triage, I get registered, but there is no triage nurse there! I waited, I think, probably 10 or 15 minutes for one to appear, and in the meantime had to listen to some healthcare aide or something fucking order food behind the triage desk! The nurse was nowhere in sight, and I felt like absolute shit. It was kind of a sign of things to come, unfortunately.  Though I couldn’t reach the machines to get any readings, I finally put the saturation/heart rate probe on my own finger, wrapped the blood pressure cuff around my arm, and stared at the thermometer knowing that I didn’t know how to put the sterile thing on it [and knowing I couldn’t reach it].  That FINALLY got the nurses’ attention who sat down and pressed the buttons on the machines, stuck the thermometer in my mouth and went over my intro letter.

My heart rate was an all-time-high for me of 169 beats per minute [they charted me at 170]. They led me back into a gynae treatment room, where I immediately proceeded to the bathroom, puked, and fucking got blood absolutely everywhere–despite the fact that I was wearing two feminine products meant for heavy bleeding, everything was already less than useful despite changing them a half hour earlier when I’d arrived at the hospital. I went into the room to put the gown on as I made my mom rifle through the cupboards for the “fancy hospital underwear” [as Steph the Awesome Resident had jokingly called it on Sunday] and dug through my stuff for a new pad because really, I didn’t give a shit if I bled all over the hospital’s stuff [by the end of this process, the floor of my room was quite unsightly as well].

Tuesday

The nurse eventually came in and did vitals, put an IV in and drew blood. Then, I am not even joking, they proceeded to not do a single effing thing for the rest of the night. I requested nausea medicine and painkillers at about 4 AM which the doctor I’d seen briefly said they would chart for me–I got a shot of Gravol in my IV, but somehow the pain meds didn’t go through–I fell asleep for an hour or so thanks to the Gravol, and woke up a bit after 7 to my mom talking stupid loud on the phone.

I went to the bathroom and felt a bit dizzy, but it wasn’t even as if the nurses were in there asking me how I was doing or checking vitals, so I didn’t report on it.

Around 9, I went to the bathroom again. And this, is where all hell broke loose.

I felt fine getting up out of bed. I felt fine walking to the bathroom.  I peed, and evidently my uterus hated this as I once again lost a ridiculous amount of blood. I started feeling dizzy, but was still extremely coherent. You’re okay. You just have to get back to E5. It’s not far.

I got to the door. I fell to the ground.

That was weird. Just need to get back to bed.

I stood up. I fell down again.

At that exact point I guess they determined I’d been gone too long. The nurse opened the door, and said “She fell in the bathroom, I need a stretcher over here.”

She helped me up and onto the stretcher. I have the bruise on my upper arm to prove it. “Which way do I need to lay down?

“She’s diaphoretic and tachypneic,” [translaton: sweating and breathing rapidly—I didn’t at the time know what tachypenia was, I was able to recall the meaning of diaphoretic which proves that my body hated me but my brain still worked] “toilet is full of blood, we need to get her into resuscitation.”

“She needs her glasses.” [I knew things didn’t look right, but in all of that, I actually hadn’t noticed that my glasses had fallen off my face, I just thought my eyes were messed up. Apparently though i was coherent, I looked a lot less confused after they gave me my glasses back, considering my eyes are super bad].

Seriously aside from the glasses, coherent? That was me. “Can you grab my bag from the floor, please?  Does my mom know where I am?

I got into resuscitation. Immediately they were pulling at my gown sticking electrodes all over me and running an EKG, firing up the monitors. IV fluids began rapidly, and they dumped them in quick. “We need gynae in here.” They repeated all the tachypenia jazz and I was like “I doubt if it makes a difference but I haven’t taken my asthma medicine properly because I wanted to keep my heart rate down.”  Pretty quickly I was back and with it. My breathing normalized with the fluids [hypovolemic shock . . . is less than a fun time. If you want to be a nerd about it, I could be incorrect, but would assume I was in either Stage 2 or Stage 3].

Stephanie came down to see me. I finally got the damn painkiller I wanted at 4 AM. She told me that she was going to strongly advocate that we get me into surgery today.  It could be two hours, it could be eight hours, or even the next morning, but she wanted me in there.

Eventually some proportion of the fluids made their way through my body–my cheerful snarkiness was coming back at this point because I was like “I have to go to the bathroom, and I assume after last time you’re not going to let me go there, right?” [They allowed me to keep my bedpan free streak in-tact, thank God, and brought over a commode to the bedside. The nurse helped me move with all of the monitors and because surely they were convinced I was going to fall over when I got up–also I must have still been bleeding a bunch at this point because they told me not to worry about the blood on the floor and helped me clean up. I AM SO CLASSY–Hi doctors, this is why you should take care of me BEFORE all this extremely classy shit happens].   Also, proven by the snark, I was evidently feeling better, too.  My hemoglobin was down to 63 again despite receiving two units of blood less than 48 hours prior.

Stephanie came back with the attending doctor in tow. He, like Stephanie, introduced himself simply as Alaa when we shook hands, which was a big respect win for me. We discussed the surgery, and she handed me the form to sign. I didn’t even read it. “So, this says if I die, it’s not your fault, if you perforate something and have to take my whole uterus, I’ve consented to that–I’ve told you, you can take the whole thing RIGHT NOW but I know you won’t do that. Signed, CUT ME OPEN.”

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“If I’m doing surgery today,” Alaa said, “Stephanie is going to have to buy me coffee.” My mom was like “I will buy you coffee!” i was like “I’ll buy Stephanie coffee.” My mom was like “I’ll buy them BOTH coffee.”

Stephanie ensured they had a couple units of blood on hand for following surgery [Nurse: “We’re going to have to draw blood again.” Me: “I had a transfusion on Sunday. Isn’t my crossmatch good for four days? I don’t think you need to draw blood again.” She was like “I’ll have to check that, but I think you’re right.” :] Turns out? Totally right.]

Surgery in itself was actually simple, and they didn’t even have to cut me open [you know, as per my demands ;)]. As my usual gynaecologist had discussed, I was getting a hysteroscopic myomectomy–they go in with a scope with a camera through the vagina, snip out the fibroid, clear everything else out with a D&C, and that is the end of that. Considering I had a D&C in June under little pain medication [read: 400 mg of ibuprofen 4 hours earlier, and some numbing stuff in my cervix (are you people weirded out yet?)] and no anaesthesia, I figured being anesthetized for this it would be absolutely no problem.  Stephanie had the nurse put a urinary catheter in while I was in resuscitation, and then they moved me out to E3 until they had a room ready for me prior to surgery.  The question, however, then became why the heck was my catheter full of blood? Prior to the advent of the insane bleeding anyways, I was certain I hadn’t been peeing blood. She kind of just figured there was trauma on insertion and didn’t worry about it [and really, first Foley over here, I had no idea what it was supposed to feel like!]

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I took all my inhalers to ensure my lungs didn’t screw up during surgery [see the cap of the pink AeroChamber up there?]. They moved me upstairs to fill out a zillion pages of medical questionnaires. Within an hour I was down in pre-op awaiting surgery.  A nurse came by and deemed one of the IVs they’d inserted upstairs less than stellar [I had two in] and inserted a new one into my left hand, then pulled out the one they’d just put into my right elbow. Stephanie and Alaa came by separately, Alaa went over everything again and told me that he wished he was only seeing me with a baby inside me, and the anaesthesiologist came and talked to me about how they were putting me to sleep for surgery–as I’d hoped, they put me under general anaesthesia. Why recall anything if I don’t have to?

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Finally, they rolled me into the operating room, which was very blue and sterile looking, but not all scary or intense like on TV. Stephanie came in and was like “Seriously, we’re about to do surgery and you’re still smiling?”. Definitely.  They temporarily lost Alaa and were about to page him, and it turned out he was already in the room.  I moved to the surgery bed, they got me into position, and hooked all the monitors back up. They put the oxygen mask on, which I swore was going to freaking suffocate me so I spent several minutes trying to convince myself to not freak out with this thing suctioned to my face. The last thought I remember having before I was out? The line in the title of this post from the Jack’s Mannequin song The Resolution, which has been a recurrent theme of relevance during 2013, and very relevant even to that morning’s resuscitation situation

When I think I’m letting go . . . I find my body it’s still burning.

With my eyes blurry, I woke up in recovery. I now have two experiences under general anesthesia that I recall, and I woke up completely coherent from both of them. A nurse showed up at my bedside, and I asked her for my glasses.  She asked if I wanted a couple Tylenol 3s and a warm blanket. People, you do not decline the warm blanket. I wasn’t actually in pain, but I prophylactically took the T3s [and, considering they’d only let me have a few spoonfuls of ice chips before surgery, the water they gave me to take the T3s with was the best feeling thing ever, especially considering how my throat felt from the intubation].  Stephanie came in to see how I was doing not too long later, and they rapidly transfused another unit of blood before sending me back to my room. “You actually didn’t bleed much during surgery, so that’s good. And we solved the catheter issue. It accidentally ended up in your vagina instead of in your bladder. So, you’re fine, but it explains the blood.” Damn close together lady parts.

They finished the transfusion, though my IVs really weren’t working well and every time the pump surged a new drip of blood into my veins, it hurt. I had two lines, so I requested they move the drip from my hand to my arm–which they said was the line that didn’t work as well.  It hurt less though and was more tolerable, so I managed to convince them to keep it there.  They moved me back to my room, and after an hour or so they actually let me properly use the bathroom [then after that time they decided they wanted to monitor stuff, so I had to pee in the hat thing and then call them afterwards–really what did I care, at least they were letting me go to the bathroom now!].

Then, of course, they decided that they wanted a new IV, just in case. They left the one in my hand in, which hurt like hell, and proceeded to squish it as they tried at least eight more times to get me a new line.  Finally, after a bunch of pokes, getting my arms slapped to try to bring some veins out, and three different nurses trying, thank goodness, Alaa strolled in and said “Stop poking the poor lady! As long as she’s peeing okay and can eat, she’s going home in a few hours!”

I liked the man before, a lot, but this conversation with him just solidified that even more.  He once again sat down beside my bed, and pulled out a piece of paper and started drawing pictures.

“So, the fibroid is gone, and we left all your girly parts in tact. The surgery went excellent.”

That teeny fibroid that EVERYBODY from my gynaecologist to the people at the hospital told me couldn’t be causing my excessive bleeding?

Yeah, it was.

And that’s because since June’s ultrasound, the damn thing had grown from 2 cm x 3 x 3 [or something of that nature] to essentially having the ability to fill my entire uterus, at 5 x 6 x 8 [once again, of something of that nature].  That sucker was huge–fibroids, which are essentially an overgrowth of muscle cells fed by a blood vessel–cause different problems depending on where they grow on the uterus and their size. Fibroids on the outer walls may cause heavy bleeding but are often asymptomatic–if they cause heavy bleeding, they still usually don’t affect the cyclic nature of menstrual cycles–i.e. bleeding during periods may be heavy, but they still last for 5-7 days or less, and don’t happen with extreme frequency. Those ones may also push on different organs and cause problems like frequent urination or bowel issues.  My fibroid was submuscosal–the rarer kind, of course!–it was growing in the inner wall of my uterus and taking up all the space in there, and causing all kinds of problems. Two and a half years ago, I started getting my period every two weeks, which was at the time linked to how hormones might act in a nineteen year old’s body as I kind of fizzled out of the whole adolescence thing–reality, it was probably the start of a really teeny fibroid, which as it grew caused the bleeding to never stop and then as the growth continued, made the bleeds really severe despite being on birth control to not prevent babies but prevent bleeding.

My blood counts were probably still sucky, but I’d anticipate in the low 80s so since I wasn’t actively bleeding heavily anymore and my blood volumes had been restored to normal with transfusions and fluids, I was allowed to go home that evening after I ate something [pending I didn’t throw up]. Alaa anticipated that my counts will be up above 100 within 2-3 weeks–“Go home, have nice steak!”

“I’m a vegetarian.”

“Oh, my daughter claims to be vegetarian. Then I cook nice steak, all crispy on the edges, and that is the end of that! Okay, no steak. You like spinach? Broccoli?” I agreed. “Yes, lots of spinach and broccoli, 2 weeks your blood counts will be all nice over 100.”

He got me to continue on the tranexamic acid until the totally bleeding stopped [so I should be done that today because with that and the hormone pills i’m so paranoid I’m going to throw a blood clot somewhere], and decreased me immediately to ONE birth control pill per day.  I was SO excited about that. I asked him if I had to stay on the pills, and while I didn’t like his response [because I don’t want to be on them] I totally respected it: “If you were my daughter” [he has three] “I would tell you to stay on it, even if you’re not sexually active.” Ah fine, fair enough. They ordered me a liquids tray, and he told me I was good to go home as long as I could eat okay.

The nurse brought me Jell-O [the cafeteria was closed–regardless, best Jell-O I’d ever tasted, considering the circumstances] and juice [yay for people not thinking my request for half apple juice half water was weird], and went over my discharge instructions–only liquids for the remainder of the day, bland foods only the next, from there increase as I could tolerate. Much of the discharge instructions didn’t really apply to me, so there was little in regard to the take-home message: No baths or swimming for three weeks, no tampons for three weeks. If anything seems weird, call, follow up with my family doctor or gynaecologist in 2 weeks and have blood work done. Don’t make any major life decisions for 24 hours.

By about 8:00, they kicked me out. Which, was quite the surprise considering less than 12 hours earlier they’d been hauling me off the bathroom floor and into resuscitation.

The recovery from the surgery in itself was nothing to speak of. I’ve taken one naproxen in the last three days for a slight headache and to bring down the swelling in my hand, which is better by the day.  I took some liberties with “bland food” and opted to include grilled cheese and cupcakes [which I have received an abundance of thanks to the amazing Steve working magic all the way from California, and my lovely ladies at work–we understand balance here: hospital fills my body with salt in the form of IV saline, we counteract that with sugar in the form of cupcakes. SCIENCE, PEOPLE]. It’s really more recovering from the transfusions and whole resuscitation scene and the fact that because surgery didn’t come into the picture until last week when my mom talked with my gynaecologist on the phone, that I have been beating up my body really hard for the last seven months.

I take my pills. I wake up every day feeling stronger than the day before. I hope to start doing light exercise late next week after my follow-up appointment with my primary doctor–which is something I have been unable to commit to since January.

And I hope i’m off this ride. Because it’s not okay. It’s not okay that I had to get that sick, repeatedly, to get treated in a way that will actually work. It’s not okay that I could have almost died before that happened. It’s not okay that I have to have a deep knowledge of not only my own body, but also understand medical science and the inner workings of the medical system to get care–because most people don’t have that kind of knowledge. It’s not okay that my regular specialist refused to acknowledge all possibilities, consider other causes from the beginning of my treatment.

I’m getting onto a new ride. Because I got lucky.

When I think i’m letting go / i find my body it’s still burning.

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Thank you to Dr. DaSilva at the Misericordia Health Centre Urgent Care clinic for providing me direction and taking the best care of me possible on limited resources.  Thank you to Dr. Steigerwald, St. Boniface Hospital Emergency Department, and all of the numerous people who took care of me–names are far too numerous to recall, but also include Badi, my RN in CPRU. Thank you to each of the nurses and health care aides who found themselves involved in my care in resuscitation–amongst the chaos I cannot even attempt to provide thanks in an adequate or inclusive way.

To the gynaecology residents who were the true light amongst the whole situation through their compassion, clarity and determination, I cannot thank you enough–I saw three of you while I was in the ER, and though I can recall Marley and Stephanie, I am unable to recall the other wonderful resident who oversaw pieces of my care.  To Dr. Alaa Awadallah, OB/GYN, you were incredible and I cannot convey my thankfulness for your easygoing manner, compassion and ability to sprinkle a few laughs into a really difficult situation.

To my friends, family, coworkers and patient instructors: thank you for sticking with me the past several months, I’m sure I was less than awesome at times.

My biggest thank you, however, must be extended to Stephanie Appleby, OB/GYN resident. I am blessed that Stephanie and I crossed paths not once but twice, and without her, I doubt my prognosis would have been as good. She advocated strongly for me from the moment that we met, and I greatly question that without that advocacy I would be alive right now. Stephanie: You’ve got this doctor thing down–compassion, grace, humour and persistence. I am awaiting the day that I can be your patient again: healthy and hopeful as these are the things that YOU restored in me through your care . . . and apparently Alaa wants to see me with a baby inside me, but I’d let you steal that position from him :].

Here’s to moving forward for real–to a new ride . .. where the ups can far counteract the downs.

making the invisible visible: 30 things. #iiwk13

I haven’t filled out the 30 Things About My Invisible Illness meme for a few years. [To be perfectly honest, and not to start any debates, but I actually am a bigger fan of the word disease than illness. But that’s another story–I feel like disease and illness are both states but illness often carries the connotation of “temporaryism”].

1. The illness I live with is: Asthma, anemia, uterine fibroids [and though not an illness, borderline ADHD]

2. I was diagnosed with it in the year: 2008 / 2012 / 2013 [/ 2013]

3. But I had symptoms since: 2008 / 2012 / 2012 [/ forever]

4. The biggest adjustment I’ve had to make is: Remembering to carry my meds with me.

5. Most people assume: That because the things I live with are common that they aren’t a big deal to live with.

6. The hardest part about mornings are: Making sure I have all the medical crap I need for the day organized [read: thrown haphazardly in my backpack]

7. My favorite medical TV show is: I don’t watch TV. But if I did, I still wouldn’t waste my time watching medical shit, I spend too much of my life dealing with it :].

8. A gadget I couldn’t live without is: Probably my iPod, not that it has anything to do with my asthma. [Though, it keeps the ADHD aspect of me organized :)]

9. The hardest part about nights are: Honestly? Remembering to actually go to bed at a proper time.

10. Each day I take __ pills & vitamins. (No comments, please) 7 pills–however, since my treatment doesn’t revolve around pills, I also take 3-4 inhalers and neb treatments as needed.

11. Regarding alternative treatments I: Am skeptical, outside of adjunctive exercise and balanced nutrition [something I need to practice more :)].

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: I know that my asthma may change how I do things, but not limit what I choose to do! I’m very blessed to presently work in an amazing place with people who genuinely care about me–through a pretty bad asthma exacerbation last September, to like 3+ weeks (combined) off work through the spring and summer because of the anemia/blood transfusions/un-diagnosed fibroids causing me to bleed to death, my boss has never required me to submit a doctors’ note. How much my coworkers care is beyond amazing–we’re far more than coworkers :].

14. People would be surprised to know: I think there are a lot of things that people would be surprised to know about living with chronic disease, especially when you’re pretty young. I think it would surprise people that I very much work to hide my asthma symptoms in real life; I think it would surprise people to know how many [thousands of] times I’ve hidden in a bathroom to take my inhalers; I think it would surprise people to know how educated you have to be in this country to receive proper medical care.

15. The hardest thing to accept about my new reality has been: I’m not really sure this is a “new reality”. The reality is, I live my life with what’s thrown at me–and I think that’s what I’ve always done.

16. Something I never thought I could do with my illness that I did was: Really, I think I started tackling things after my asthma diagnosis that I never would have bothered with before. Simple things, but simple things that made me a better person. I think if anything, asthma made me more ambitious than ever feeling limited.

17. The commercials about my illness: Could not piss me off more. Take this drug and you’ll have perfect asthma control and frolic through the field of daisies with all of us in the Elusive Land of Perfect Control! I take three inhalers, 2-4 times per day, plus a rescue inhaler and nebs anywhere from zero to twelve times a day (on a bad day) and I still can’t run anywhere for very long.

18. Something I really miss doing since I was diagnosed is: Like I said, I live a much fuller life post-diagnosis. I can’t say that I miss living less ambitiously than I do now! So, I’ll go with breathing effortlessly.

19. It was really hard to have to give up: Once again, I say it all the time–“asthma may be a speed-bump but it’s never a road-block”. The only thing I really gave up was not having ridiculous lungs–and, I didn’t really have a choice in that, did I?

20. A new hobby I have taken up since my diagnosis is: Blogging, meeting people from the internet [ooh, dangerous! :)], exercise, and visiting my dear, dear friends at the pharmacy [kidding, dear God].

21. If I could have one day of feeling normal again I would: Feeling normal? I’m not sure I ever felt normal before I had all this weird stuff happening in my body–let’s be honest here, I’m rather strange :].

22. My illness has taught me: That I can choose how I define my own world.

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, it’s ‘just’ asthma.” Yes, because BREATHING is not important AT ALL. “It’s all in your head.” Actually, it’s not–and I’ve got a copy of my methacholine challenge that proves that.

24. But I love it when people: Are aware of the realities of living with asthma, the variations of what “asthma” can mean and make an effort to be conscious of people with this disease.  Or… if they’re interested in discovering the above!

25. My favorite motto, scripture, quote that gets me through tough times is: I think there are a lot of them, but mostly they come in song form.

Watch the Sky – Something Corporate (“and i’ve been up for days / I finally lost my mind and then I lost my way / I’m blistered but I’m better–and I’m home. // i will crawl–there’s things that aren’t worth giving up, I know. / but i won’t let this get me / i will fight–you live the life you’re given with the storms outside / some days all i do is watch the sky // […] i think i could use a little break [but today was a good day]”), has been a big one through long nights of asthma and ER visits for the anemia. From my ER visits this year, the picks were

Caves – Jack’s Mannequin (“no peace / just clicking machines / […] / i lay still, still i’m ready to fight […] / the walls are caving in / as far as i can see […] there’s no one here but me / beat my body like a rag doll […] windows leading to the past / think it’s time i broke some glass–get this history off my mind / […] everything’s a piece of everyone.“),

Diane the Skyscraper – Jack’s Mannequin (“but I don’t have the energy / so she plugs my machines back in […] / i’d be lying if i said this was my plan / but we are all in this together / see i’m trying but i just don’t understand / why i can’t predict the weather past the storm.”) and

I Swear This Place is Haunted – A Skylit Drive (“Is there something beyond science going on here? / in the dead of fear, fear / […] this is the last winter–part of a change for better / I’m moving forward now–turn all of this white, the creature at night / you said it would never find out where I rest my head at night.”.)

26. When someone is diagnosed I’d like to tell them: Do what you have to do, stay–or become–active, make good choices, ask a billion questions, and own this thing.

27. Something that has surprised me about living with an illness is: How much my perspective on just about everything has changed. For the better.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hands down, Medicine-X last year was full of these things. People there, my fellow ePatients, understood my prednisone induced crazy. They asked the right questions and made me feel like I was supported and cared about. My friend Steve checked in a few times a day to make sure I was okay and kept offering to drive down the couple hours to Palo Alto if I needed anything. It was overwhelming, and I felt like shit, and I really could not have gotten sick in a better place as unfortunate as the situation was, because people there got it. People at home have a harder time comprehending it.

29. I’m involved with Invisible Illness Week because: Just because you can’t see it–doesn’t mean it’s not there. I usually look–or can look–totally healthy, even if I’m not.

30. The fact that you read this list makes me feel: Thankful. That one person at a time, you and I can change our own perspectives . . . to change somebody else’s.

“no peace, just clicking machines”: the hospital story

Surreal. That is the only word I can find to explain the things that have occurred over the past few days. It feels like a long expanse of time from my life is missing, however, it’s that missing expanse that I find myself living in my head over and over again. The hope is, if I get it out here . . . I can get it out of my head.

For the previous week and a half, I’d been extremely tired and not feeling well, missed a lot of work and slept way too much. Constantly being grated on about my nutritional choices didn’t help, and frustration was setting in hardcore. After over a week off work, on Monday I finally had regained enough strength to return to work after seeing my doctors on Friday morning, who, instead of repeating the same old phrases of iron-rich foods, respectively a) said she would arrange for an ultrasound and b) started me on Provera to deal with my messed up periods which are the real root of the anemia issues. We’d try that course of action for the next three weeks, and re-evaluate. I got blood drawn like I have many times, and returned home.

Monday morning (May 6th), things had continued to go on the uphill and despite a crappy night of breathing and four hours of sleep, I went to work feeling okay. I was exhausted, but I was happy to be there and went through the motions like any morning, albeit with less enthusiasm. I came to school, and while I was hanging out in the accessibility office, I read the heartbeat skipping text conversion of a message from my doctor’s assistant: “I need you to call me as soon as you can.” I slipped out of the office and down the hall, where I was told “You need to go to the emergency room right away and tell them your hemoglobin is 56–you may need a blood transfusion.” My response was to ask if I could go to class, considering I’d gone to work that morning, and after checking with the doctor, I was okayed to go to class prior to going to the ER.

I calmly returned to the accessibility office and BBMed my boss, then once my paperwork in there was done I went to my mom’s office to let her know what was going on, e-mailed my friend Steve and BBMed my friend Dia. While I went to class, my mom went back home and packed my stuff up, picked me back up at school and we went to the hospital.

I was triaged (and got a mask to wear, because I was so uninterested in getting germy sick in that ER), and the 2.5 hour wait began. I was called in, re-assessed, and stuck twice before an IV was accessed (that shit hurts. I was biting the inside of my mouth–I really thought it was not going to be a big deal but . . . wow). Blood was drawn from my other arm, and IV fluids were started. I saw the awesome Doctor Tim who complimented me on my Chucks and commented on the fact that my iPod, video camera and phone were all siting on my bed, and waited for blood to arrive–over the weekend, my hemoglobin had dropped further, to 52, while it should be over 120 . . . so while I was feeling fine, I was in pretty bad shape. My heart rate upon my first check once in my little ER room was 137–in most of my fitness labs last term, my resting heart rate was in the 70s.

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Not impressed with this situation.

Eventually the nurse said that the blood should be arriving in about 20 minutes. Finally, they hooked me up, we waited the initial 15 minutes to ensure I wasn’t having any sort of reaction to it, and then my mom left for the night. Because my blood counts were so messed up, I was sick, but I was feeling totally fine and was constantly using my phone, iPod or iPad to keep myself entertained, and video blogging the hospital stay as it progressed (near the end of this post). By about 9 PM I had given up on the idea that any sort of sleep might happen between the frequent vitals checks and the old lady yelling in the room across from me. I plugged my earphones in and watched the Dear Jack documentary once again as fresh, packed red blood cells united with the ones already in my body.

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Not impressed with this situation, but even after the saline alone, my nurse commented that my colour was already better.

Sometime during the first transfusion, around 11:30, I heard the nurses doing a shift change and talking about me (I was “19” due to where I was located). Soon enough, someone crashed through my door with another bed and I got transferred out of the main ER by a couple hospital people who chose to crash through my doorway with a bed–I was just like “Just leave it there, I can walk!”. After feeling like I was in some kind of movie as they not-so-gracefully careened my bed to the back portion of the ER, I found myself in a much better room in a quieter back area, still my own room with my own bathroom, which I was happy about.

Eventually, the last bit of the blood was run through with more saline, and sometime soon after I was given a shot of Lasix through the IV, left on the saline for awhile, and told to rest. Hahaha, funny joke nurses! Reality: there is no rest on Lasix (a diuretic), and when the nurses say “This will make you pee” is the understatement of the year. Within about five minutes of the first dose, I was, I swear, going to the bathroom every five or ten minutes (I was like “REALLY what is the point of giving me IV fluids if you are simultaneously just making me pee it all out?!”). I think my nurse was actually slightly amused. Eventually the nurses came in again and started the second bag of blood (which is this big important production involving turning the bright light on because one of them has to stand there holding my arm and reading all of the information off of my bracelet to the other nurse reading the matching information off of the bag of blood).

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Throughout much of the time I spent in these hospital beds, I played the same three things on my iPod:

  • Caves – Jack’s Mannequin [for about eight hours straight]:
    • “No peace / just clicking machines […] the walls caved in on me.”
    • “I lay still, still I’m ready to fight”
    • “The walls are caving in / Doors got locked for sure / There’s no one here but me . . .”
    • “I fought a war to walk a gangplank / into a life I left behind / windows leading to the past / think it’s time I broke some glass / Get this history off my mind.”
    • But really, it is all about the piano–you’ll know the part I’m talking about.
  • Diane the Skyscraper – Jack’s Mannequin:
    • “But I don’t have the energy / So she plugs my machines back in . . .”
    • “And the late night TV talks to me, bout God, but God why can’t I sleep / As she plugs my machines back in.”
    • “I’d be lying if I said this was my plan / but we are all in this together / See I’m trying but I just don’t understand / Why I can’t predict the weather past the storm.”
    • “And I feel like I’m a battle tank / But there’s peace for every pound of strength.”
  • and the Matthew Good album Hospital Music.

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Sometime around 2 AM the night shift ER doctor came and talked to me, and was a total sweetheart. She told me she was going to refer me to hematology (outpatients) to do testing to rule out a bleeding disorder (like Von Willebrands), and sat down on my bed and told me about how she has two kids with hemophilia. Really, if a doctor is going to come visit at 2 AM, it helps if they are personable–though I only saw her for a few minutes, she was fantastic.

Between the vitals every half hour and the next shot of Lasix (I tried to argue with them on it–“I don’t want that again. You told me to rest and I just ended up going to the bathroom every five minutes, how is that even productive?”), sleep was non-existent. Even more-so when at 4 AM old-man-next-door was yelling about his rain gauge and getting angry with the nurses. Somewhere after 4:45 AM, the nurse came in to do vitals and took the SAT probe away from me because apparently she didn’t like me playing with it. Also sometime around here I also caused an “upstream occlusion” in my IV by getting tangled in the power cord (serves them right for giving me the Lasix :]).

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The early hours of the morning . . . 4:19 / 4:45 AM

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The third and final bag of blood was started sometime in the early morning hours, and when it was finished I actually got unhooked from my IV for a bit–pretty soon after this, my morning nurse, Spencer, came to give me another shot of Lasix, and I told him “My arms are free now, let’s have a dance party instead of the Lasix, okay?” (He didn’t oblige, by the way, and I swear they have a script because he was just like “This will make you pee”, and I was like “Understatement of the year, my friend.” The first dose was the worst, but I still was going to the bathroom like every twenty minutes on the subsequent doses, which was still ridiculous but not as ridiculous. Granted, I was just happy not to be stuck to the pole anymore, because that thing had shitty wheels and made everything so much more confusing.

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I actually don’t hate this picture, because I actually look fairly healthy in it. Also i was happy because I was untethered.

I thought once I’d gotten unhooked and shot up with Lasix one final time that I was free. I honestly did. My last heart rate that I’d asked about was 94 and I was like “Oh good, look, time to go home.” The lab came and drew blood . . . and then Spencer re-appeared and hooked me back up again! Needless to say, I wasn’t impressed.

Soon enough another doctor came in to tell me my hemoglobin was up to 113, that I just needed to ensure I kept my appointment with my gynaecologist on May 22nd and keep taking my iron pills, and I could go home. Spencer came back and unhooked me from the saline and pulled my IV and I was free to go.

While my hospitalization wasn’t in the least torturous, and full of really good people taking care of me, it should have never had to happen to begin with. I’ve been expressing concerns to my family doctor for a year and continually requesting regular hemoglobin draws, and those values have been having ups and downs, even when I was compliant with treatment. The purpose of having a doctor is so they assist you to make the right decisions about how to deal with what is going on in your body . . . not simply facilitate the making of requests. The big issue finally came, obviously, within the last couple weeks, when between April 12th and May 3rd my hemoglobin dropped from 8.3 (up from 6.something) to 5.8. It should have never had the chance considering I was seeing my doctor almost monthly to get to the point where I could barely get out of bed for five days, and it should not have taken a week to see my doctors after the fact–I am still angry about that. If you know me, you will know that I am all about self-advocacy, but the reality is, in order to put up a fight . . . it is imperative to be moderately healthy–you have to have the energy to fight. Denial is a typical and important yet also potentially detrimental coping mechanism, and I’ve experienced that deeply in this experience–I am okay, it’s not that bad. I spent an entire weekend telling my mom that I didn’t need to go to the hospital when I couldn’t even get out of bed without my head hurting. Denial is easier than feeling all kinds of the crazy things it’s possible to feel when you’re sick . . . because it’s less emotionally draining when your body and mind are already exhausted.

There came a point, which I didn’t realize until I got home from the hospital, where I simply went on emotional autopilot simply just to keep surviving, and really, it felt a lot better when I started feeling things properly again. And I think that came with the return to energy, too. Because for way too long, I’ve been coasting. I’ve been trying to survive and my body wasn’t healthy–yet, I was trying but without the right tools. Which is futile. Regrets are futile, also, however–I’ve learned that if this ever, God forbid, happens again that I’ll go to the hospital when things start getting bad and not lose a week over my life . . . 22 hours was quite enough, but I’m back to where I should be . . . and working at getting better everyday.

I was blessed this week by the words and support of dozens upon dozens of my friends both near and far, and I am so thankful for these people–sharing their stories, and sending me e-mails, texts, tweets and Facebook messages continuously in the hours during and following my time in the hospital. Those things made the length of the days and nights both at home and in the ER more tolerable. That support means everything, and to everyone who reached out at all hours, I am beyond grateful for your support.

But more than that, I was for the second time in my life blessed by the gifts of people who I will never be able to thank, for helping to make me healthy by choosing to donate blood. I received a transfusion early in my life as a premie, and donated blood once in high school–I very much hope that I can stay healthy enough to be able to donate blood again soon. The irony is, I had a blood donation appointment booked for May 2nd that I couldn’t attend, and days later I was on the receiving end. To all of you who donate blood regularly: thank you. I cannot convey my thankfulness enough, nor can I express to you the awe I feel in the fact that I feel so healthy now. Thank you.

There are additional points of irony in this story. Monday when I was at work (fully believing I was perfectly healthy) my boss told me I looked like I’d lost weight (which I figured was just one of those things people tell you when you’ve been sick a week and thought nothing of it). I walked out of work and tweeted this Jack’s Mannequin lyric “She thinks I’m much too thin / She asks me if I’m sick“, and thought nothing about it–I tweet lyrics all the time (it turns out I have lost fifteen pounds, which is crazy, but since I never weigh myself I don’t know the timespan that occurred within).

The real irony comes in two places, the first the obvious that I was still super sick. The second piece of irony is, the album that song is on, Everything in Transit, culminated recording the same day lead singer Andrew McMahon was hospitalized for anemia then diagnosed with leukemia–the album has all kinds of random hospital/doctor references that were really foreshadowing to what would happen next in Andrew’s story (later on, the album ended up coming out the day he got a bone marrow transplant)–my tweeting of his lyric foreshadowed the next 24 hours in a similar way as his own story was foreshadowed by the album, which is really surreal.

In the darkness, blessings, however, shine through. And two things remain in everything: perseverance and hope.

And, the story continues . . . and I am very thankful that it does . . .

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When I think I’m letting go, I find my body it’s still burning

[…] I need light in the dark as I search for the resolution.”

–the resolution, jack’s mannequin