“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.

beyond expectations

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Last year, my university changed their graduation requirements for the kinesiology program. This means, since I started the program in 2010 [or something of that nature, I’ve been there too long], I can choose between the new option or the old one. [Main point: the new one requires only anatomy. The old one requires both anatomy AND physiology].  I met with the department chair last year to discuss swapping some previous credits in teaching/psychology related courses for other related ones, and seeing if I could switch anatomy for physiology–just to see if I maybe could handle that better.

Since May, the whole department has kind of switched things up turning into a faculty, however, so I e-mailed the new associate dean on Thursday last week to follow up–turns out that the department chair was taking my request to the curriculum review committee the next day, but we scheduled a meeting anyways. Within 24 hours of his response, I had received an e-mail from the chair as well as a follow-up from the associate dean […got that?].  Approved: Switching coaching/teaching requirement and swapping the psychology class. Not approved: Anatomy exemption/swap. So, I was rather surprised when the associate dean responded with my question of whether we still needed to meet with “I think we should still meet to discuss how you are going to handle the Human Anatomy requirement.”

So what’s changed between last round and this round? Another F, being assessed for learning problems, and becoming registered with Accessibility Services.  I got his reply and my jaw just about dropped.  I walked into his office this morning, and the first thing he said to me was: “Kerri my dear–let’s talk. The department is willing to work with you to get you through anatomy and out of here.”

I was choked up the whole appointment.  The results of that meeting? I couldn’t believe it. At all.

The kinesiology department is not just willing to work with me, they are going beyond what I had ever imagined–much like the accessibility department did. I am floored.

The department is going to pay for a mentor/tutor to work with me. I was prepared to pay for a tutor [and I probably still will for some extra hours]. The number of hours they will cover has yet to be determined, but this is huge. On that note, their hope is that this person is able to work with me in lab . . . in a separate lab section to minimize distraction and ensure I am actually understanding things. This will also allow me to work a bit slower at quizzes in lab and give me a bit more time for the model to sink into my brain.

Second, we discussed testing, specifically in the lab. My accommodations through Accessibility Services already allow me lengthened time for tests [thanks second percentile processing speed!]. We have yet to figure out how we are going to make this work, but it is just awesome knowing that they will make it work. [He offered, also, to exempt me from quizzes and weight my final exams higher, but I decided that it is good to get that kind of progress report on a weekly basis.]

Third–yes, third, and definitely the most interesting–is that the associate dean himself is all over this. He wants me to meet him every few weeks for an hour or two so we can go over what we’ve been working on class–through this, he can figure out the best ways to help me retain what I’m doing in the course, and figure out what I need to work on and help me actually understand it–not just memorize it–and check in regularly about how things are going.

Seriously? Speechless. Honestly, I was told awesome things about this guy. And he not only met my expectations of his awesomeness–he went so far beyond them.

I hope that, with all of the above, I can go far beyond my own expectations, too.

eight years.

hello, I’m trying to focus but my eyes deceive me / focus — I’m witnessing history repeating.

–Made for TV Movie, Incubus

At about 12:30 am yesterday I thought about it. It being September 7th

And did not think about it again.

In semblance to what the rest of the faith aspect of my life has looked like for the last year and a half. if not more. If not more than the last year and a half, if not more distance. If not more of everything–except closer.

This was last year. And that is the same as my thoughts at present.

But I know I don’t deserve this. I don’t deserve anything. I am blessed. I am blessed to be here, to be thriving, to be alive.

You keep healing me in spite of me / opening my heart and killing me for me / bring me back to life, yeah I’m gonna be alright / i got You on my side tonight.

me, october 2010

So, I will say thank You. Thank You for having patience, thank You for giving me hope, and thank You for life. Because I don’t deserve this. At all. And I need to not forget that. I need to worship, I need to love, and I need to live.

Still, two simple words raise from my heart: “Thank You”. Thank You will never be enough, Lord.

Why?

Why can I not see all around me? Feel it? Reach for it? Think about it. Why am I so resistant, so distant?

So emphatic about staying this way? So consistently pushing away from God–the only One I need to be holding on to?

I have woken up in so many ways in the past two years–why not this one, too? Why don’t I feel like I want to try to fix this? Everything that’s kept me . . . made me alive. Why am I, like everything I hate, taking this for granted? My own cynicism is obviously part of the problem–seeing people who also identify as Christians–who frustrate me by their actions of hate. The label process that I try so hard to deviate from. The things that lead me to change the Religious Views section on Facebook so many years ago from “Christian” to “I worship JESUS”.

Jesus. He’s who it’s all about. And maybe, instead of trying to wrap my head around everything that the mess that is “religion” is . . . I should just focus on who HE is first.

I want to reach forward.

But even when I do . . . I still have to open my hands.

court is in session, a verdict is in / no appeal on the docket today, just my own sin / the walls cold and pale, the cage made of steel / screams fill the room: alone i drop and heal / silence now the sound / my breath the only motion around / demons cluttering around / my face showing no emotion / shackled by my sentence, expecting no return / here there is no penance, my skin begins to burn

so i held my head up high / hiding hate that burns inside / which only fuels their selfish pride / all held captive up from the sun / the sun that shines on only some / we the meek are all in one

i hear a thunder in the distance / see a vision of a cross / i feel the pain that was given on that sad day of loss / a lion roars in the darkness: only He holds the key / a light to free me from my burden and grant me life eternally. / should have been dead on a sunday morning, banging my head. / no time for mourning, ain’t got no time. / should have been dead on a sunday morning, banging my head. / no time for mourning, ain’t got no time.

i cry out to God, seeking only His decision / gabriel standing confirms i create my own prison

i created, i created, i created, i created, i created my own prison . . .

should have been dead on a sunday morning, banging my head. / no time for mourning, ain’t got no time.

my own prison, creed

I create my own prison.

And I’ve been freed. I only have to walk outside of this.