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.

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.

A little over a month ago, I entered into a blogging agreement with Jon, the owner at My Identity Doctor. While I updated the official disclosure page at that time, I held off on the official announcement until I got going blogging.

The deal: Jon offered me a position blogging 6-8 times per month. He’s paying me and has offered product discounts.

What this means: For this site? It means from time to time I’ll probably let Kerri on the Prairies readers know of new posts I’ve written for My Identity Doctor if i feel they’re relevant to what the core themes of my blog are. Otherwise, it means very little for what I do here, which is chronicling my life. For the My Identity Doctor blog? It also still means that my views on my own–however, science is science–which is what my primary focus will be–and I believe strongly in the necessity of medical ID jewelry, which I’ve communicated before on this blog.

If you have any questions about the agreement, shoot me an e-mail and we can chat–transparency is a big deal to me, and I want to be sure that anybody reading my blog or having any concerns still feels that transparency.

Otherwise, if you’d like a fresh primer on who I am, head on over and check it out!

My body has spent the last five months throwing curve balls at me.

Curve balls that are only really caught after they’ve already hit me hard, and the time of impact involves yet more to actually catch it.

A week and a half ago, I got to take my first break from the hormone pills, then start up again on the lower, normal dose. After three days off, and three days back on, I knew things weren’t stellar, but I was like look, your body has been through a lot in the last few months–let it adjust. So I called the doctors’ office on Monday just to be sure things were okay. His assistant agreed that it was probably a normal response, but she scheduled me a same-day appointment anyways.

I am thankful I went with my instinct and went in. I’m pretty sure I said about three sentences and my doctor immediately increased my pills back to twice a day for another two months, confirming my thoughts that we lowered my dose too early. Gave me the real lowdown–you might bleed through this whole pack of pills. We might need to do another D&C. Sent me to the lab for a CBC.

Gave me yet more reasons to trust him.

Trust is something I realized two weeks ago that I’ve been having a hard time with lately–trusting my own body, primarily, and trusting the people taking care of me. Every time I think something is getting better, things crash out around me–every time I think we are making a good treatment choice, things fall apart.  Because as much as this whole thing can mess up my body, it can totally mess up my mind, too.

I am ready to stop feeling like a grenade waiting for the next explosion. I am ready to not only feel like I can trust things, but like people can trust me. Because this last one? That curve ball hit me hard.  Even if totally irrational, there’s an overwhelming guilt that can go along with a variety of medical problems–and when my problems mess up somebody else’s plans–like it has done this time–this guilt feels so familiar.

I’ve discussed the 2013 soundtrack. Invariably, I put a song in there, and I let the playlist cycle through, washing me through all of the moments of this year. And this time, the guilt kicked in and I could barely get a new track in there fast enough.

The guilt, even over what I cannot control? I feel it..

i’m lost at sea / the radio is jammin’ / but they won’t find me / i swear it’s for the best / and then your frequency / is pulling me in closer till i’m home. / 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.

this room’s too small / it’s only getting smaller, i’m against the wall / and slowly getting taller here in wonderland / this guilt feels so familiar and i’m home.

i think i, i could use a little break / but today was a good day. / and it’s a deep sea in which i’m floating–still i seem to think that i must crawl

there’s things that aren’t worth giving up i know / when you can’t bear to carry me i’ll fight / you live the life you’re given with the storms outside / some days all i do is watch the sky.

[today was a good day]

watch the sky, something corporate

I have yet to reach that good day in this round.

The thing is though, without trying I found hope three minutes later when the first song on the soundtrack cycled up. Light in all the darkness.

But this? This makes me know it is coming–cycling back to fresh beginnings . . . someday.

there’s a lot that i don’t know / there’s a lot that i’m still learning / when i think i’m letting go i find my body it’s still burning / and you hold me down / and you got me living in the past / come on and pick me up / somebody clear the wreckage from the blast

i’m alive / but i don’t need a witness to know that i survive / i’m not looking for forgiveness / yeah i just need light / i need light in the dark as i search for the resolution

and the bars are finally closed so i’ll try living in the moment / till the moment it just froze, and i felt sick and so alone / i can hear the sound / of your voice still ringing in my ear / i’m going underground / but you’ll find me anywhere i fear.

[some stories i will never tell… and i’m almost home]

and you hold me down.

the resolution, jack’s mannequin

Winnipeg-20130717-00029.jpg

The last six weeks was, I am sure, more than enough to make me unsettled (in a not-good way).

Last week, the seventh week, was about reclaiming ground, becoming more settled in my body, knowing things are getting better.

Saturday . . . i had this feeling arise over me. For the first time in a very long time, I felt healthy. I have clung on to that feeling for the past 30 hours. (My lungs still don’t feel right, but hey, otherwise I feel good, I can deal with the lungs. I’m blaming the rain for that).

Finally feeling healthy, though, made me realize everything I need to work on. Things I have the energy to work on. Finally.

Physical Activity.

Exercise is a thing that suffered–which is also a thing that I’ve found keeps me balanced . . . contributing to the state of emotional unbalance on top of the obvious physical unbalance.

Exercise graph

Part of this dropoff was intentional. When my hemoglobin was slipping bad, I was intentionally not exercising beyond walking to and from the bus, because I didn’t want to contribute any to the state of dropping–the reality is, I’ve been sicker than I cared to admit since March. And I was trying to be proactive and my doctor was not engaging with me on working with me on that.

The other part is that I simply could not do things. I would walk home from the bus and have to take breaks because it was too hard–my heart would pound inside me with even small amounts of moderate exertion. I would get short of breath and it wasn’t the asthma. I was a mess for a lot longer than I admitted to many people, but what else was I supposed to do? I didn’t know better that what I was feeling would become as bad as it did down the road.

This, I need to rectify.  Back to paying attention to the fitbit, and doing some TribeSports challenges to bring my focus back to where it should be.

Nutrition.

It is not so much the fact of micromanaging the micronutrients that I need to work on, it is just simply making healthier food choices. Leaning away from all of the stuff that I know I don’t feel good from or about after eating, and having all that stuff on a less frequent basis. It’s a fine line, and I know myself–and I know that I have a hard time balancing this stuff in the most basic way.

Creativity.

Writing has for as long as I can remember been my release. I started journaling and writing lyrics/poetry in the fourth grade. These things have been the sole methods of getting me through so much of the tough stuff in my life.  2013, having the theme of Make Yourself, I want to expand on that. I’ve been trying to make a more focused attempt at journaling–“and i scratched these words / into a black notebook”.

Words have always been my weapon. Music has been a second.

Visual art? Even farther, yet still something I have gravitated towards and wanted . . . but seldom wrapped my fingers around.

Friday . . . I started to transform that with a quote inspired from one of Andrew McMahon’s tattoos.

Winnipeg-20130623-00647.jpg

my intention / a bullet / my body / a trigger finger / . . . and my pen is a pistola.

my secret arsenal is an infinite, ageless inkwell / it’s a fountain of youth and a patriot’s weapon of choice.

pistola, incubus

I’ll be capturing that process on deviantART.

Balance.

I’ll be honest here. It’s a paradox: when my health is at its worst, the things that keep my body and mind balanced are the first to go in the effort to simply survive. I’m realizing now that this is incredibly backwards, yet . . . it feels incredibly necessary at the time.

when dark clouds cover the sky / like there’s no hope, You are my light / You tell me to live. / when i’m all by myself / and i’m scared about my health / You tell me to live. / and when You heal my broken wings / yes, You heal my everything / You tell me to live.

You tell me to live, the rocket summer

Be intentional.

This week . . . I am rolling back onto Operation Intention. Getting back to making better choices . . . for all of me. Body, mind and heart.

Recovery.