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What a Bloody Mess!

“What a mess!” I thought. “What a bloody mess!” I wasn’t British cursing–I meant literally bloody.

I had settled into the recliner after getting my infusion going last Friday. Needles in? Check. Pump started? Check. Blanket? Check. Gatorade? Check. Anne with an E? Check and check.

I got caught up in the show, continuously thinking “this didn’t happen in the book,” and cringing in second-hand embarrassment from Anne’s antics. I neglected to check my sites as often as I should have–at all in fact, until I felt a weird trickle running down my left leg. Crap. Crap crap crap. I knew what that meant. I stuck my hand into my sweatpants and felt the left side of my leg where I had placed the needle half an hour before and was greeted by a wet, sticky mess. That confirmed it. My site was leaking.

With a groan, that for once had nothing to do with what Anne was doing on the TV, I got up and went into the kitchen to assess the damage further. Down went the sweatpants. Up went the leg of my bball shorts. Another Mormon curse word or two as I saw that I wasn’t just leaking Gammagard, I was also leaking blood. Rather a lot for such a teeny, tiny hole in my leg.

I’ve done more than 150 sub-q infusions by now. I’ve had leaking medicine, blood in the tube from hitting a blood vessel, asthma attacks, headaches, chills, extremely painful needle sites that rub too close to the muscle, bent needles, needles falling out mid-infusion, faulty tubing–just about everything. But this was the first time I ever leaked blood.

As always before starting the pump I checked to make sure that my needles hadn’t landed in any blood vessels; once the needles are in I pull back on the syringe and if blood comes into the tube, that means trouble–I can’t use that site. I had done this on Friday as usual and it was all clear! So I shouldn’t have been bleeding… but I was.

I talked to an infusion nurse about it Monday. She said, “that’s weird.” (If I had a nickel for every time a health care professional has said that to me…) Usually when leaking occurs it’s because the needle isn’t long enough–it’s not getting deep enough into your fat tissue. But based on my weight and height the nurse was pretty sure that wasn’t the problem, and we were both reluctant to go up to the next needle size–12 mm (yikes).

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This is a 9mm needle

Instead she recommended I try using more sites. For a while now I’ve just been using two, which I know is pushing it. You’re really only supposed to have 15-30ml of fluid per site; with just two I’m demanding each take about 50ml. That’s a lot.

Friday after I discovered the leak, I had to pinch off the tubing and take the needle out of that side, so my right leg had to take about 80ml of fluid. That was seriously ouchy. I should have taken a picture–it was pretty hilariously swollen–but I didn’t. Just imagine an angrily red grapefruit on the side of my leg and you’ve about got it.

So now I have to use a three needle set.

 

Which is fine. I actually used a four needle set for the first couple years I did sub-q, then I switched because I liked only having to stick twice per infusion. I’ve never used the trifurcated sets much because, well, it’s silly but the lack of symmetry bothers me; with three needles there’s always one side with two and one side with only one. It’s weird. But since my skin is done with this 50ml-per-site foolishness I guess my OCD side will just have to deal.

The question is then: how do I decide which side to torture more?… Flip for it? Eeny, meeny, miny, moe? It’s a conundrum alright.

 

A Post-Op, a Follow-Up, an Infection–Isn’t Summer Fun?

Thursday June 15th: 2 Weeks Post-Op

Today I had my post-op appointment for my gallbladder surgery. Dr. Jones said I’m healing great. He took off the last of my steri-strips and checked to make sure the muscles underneath the incisions are coming together. I’m still not allowed to lift anything over 20 lbs or do strenuous exercise for another two weeks (which includes body weight stuff like yoga- I asked), but after that I’m clear to do as I please. I think that includes life in general–so if you see me robbing a chocolate store on TV or something, don’t worry–Dr. Jones said it’s ok.

I’m hardly in any pain any more unless I try to use or stretch my ab muscles too much. The most residual soreness is in the area where Mr. Gallbladder used to live–it feels like I’ve got a stitch/cramp there underneath my ribcage.

My digestion is also still adjusting to  the vacancy, but is doing quite well over all. After all the horror stories I read about crazy bad diarrhea post-gb removal, I had a very slight case of the runs for less than a week. I have been able to eat cheese, yogurt, lactose-free ice cream, burgers, potato chips, brownies, whip cream, avacado, and lots of other yummylicious foods that caused gb attacks before the op. I am SO happy I got the surgery. I don’t miss the little green fella one bit!

Monday June 19th:

I had a follow-up with my neurologist today. My migraines have improved from daily to 2-3 times per week–much better, but still pretty out of control. Doc L is an awesome neurologist; he listens, talks to me like an equal, and most importantly- hasn’t tried to hold my hand, not even once (my neurologist in HS always held my hand, no matter what diversionary tactics I employed to avoid it). But even he admits that total control–zero headaches for months–is likely out of reach in my case. So for now we are shooting for better control, and we’ll go from there.

Since my body seems to handle the Prozac well, we are doubling the dose (to a normal adult dose) and hoping it will get me down to 1 or so migraines a week. Unfortunately the jump in dose has brought back my favorite of Prozac’s side effects: I can’t sleep! Not a wink. Luckily it should pass in a couple weeks. It did the first time.

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Until then this is me

Thursday June 22nd: 

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I have finally accepted it. I have a sinus infection, for the second month in a row. I am frustrated because it’s been just over a year since I had sinus and turbinate surgery and I’m wondering if I’m going to need another soon. With my Ig infusions I shouldn’t be getting infections this much, but they just keep coming one after another.

My immunologist doesn’t have answers for me, but he is trying. When I get an infection I don’t even have to go in, I just message him and he sends the antibiotic script to my pharmacy. This time I’m on Amox-Clav for ten days,which is an optimistically short course, but hopefully it’ll do the trick.

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I know it’s silly but every time I have to go on antibioticsI feel like a bit of a failure. Every time I go over things in my head– maybe if I had done A, B, or C differently I wouldn’t have gotten an infection. Maybe if I ate better, slept more, got more or less exercise, didn’t do this and did do that…

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I’ll see Doc C for a follow-up in a couple weeks and we’ll talk it over, see what more can be done. It’s a constant climb and I’m always just hoping to find a good foot hold or a little ledge where I can catch my breath. But even though it’s hard–it’s so, so hard sometimes–when I stop to look around, man it’s still a beautiful view.

Listen Up for an Awesome Chick!

Her name is Niccole. I don’t know Niccole that well, but I know enough. I know her a bit because she played basketball with my sister this year. I know she threw a birthday party for her fish–I’m pretty sure no fish has ever had their birthday celebrated by so many people. I know she was always wanting to babysit my niece–which is proof enough to me that she is an excellent person with good judgement. I know every time I saw her around campus she was smiling (and we all know that is an unbelievable feat). I know she graduated from my school in May, and I know that ten days after she graduated she got diagnosed with lymphoma.

I know, and we all know, that sucks. I mean it really, really isn’t cool.

Of course there are so many people around the world fighting cancer. So many that we wish we could do something for, but we can’t–we can’t help every cancer patient out there. But the great thing is that today, we have the chance to help Niccole.

Please share and donate if you can! She deserves all the love and support we can give her!

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Help Niccole Clarke Kick Cancer!

 

 

 

 

It Get’s Better: My PI Diagnosis

Since we started out the week in high school hell it seems only fair that I finish up the week with a happily ever after. So here it is:

I can’t remember the exact date I found out. Isn’t that horrible? Until now I have never been able to bring myself to even write about it; I write about everything big in my life, but this one day was too perfect to even try to capture. After four years, I’ll finally take a shot at it, but just know there really are no words good enough…some things will inevitably be lost in translation.

It was in May, I know that–towards the rear-end of my senior year. I had been working with Dr. B, an allergist/immunologist, for over a year. We had tried just about everything to find the cause of my unending infections, but just as they had my whole life, everything kept coming back normal. Allergies: negative, except for a couple of foods. Immune globulin count: normal. Vaccine response: normal. Autoimmune markers: negative. But unlike every other doctor before her, Dr. B never gave up. I would come in for an appointment on Monday and she would tell me things she had thought of while researching my case over the weekend. When she was at a loss she consulted with other immunologists. She and her nurse put in hours working with Tri Care to get coverage for super-specialized tests that one of her colleagues did in D.C.

I had to drive up to her Williamsburg office to get the blood drawn and then it was shipped right away to the specialized lab in D.C. Like always I hoped, but after years of disappointment I didn’t really believe anything would come of it. A couple weeks later I had a follow-up with Dr. B early in the morning. I was feeling very sick from another sinus infection and I almost didn’t go, but my parents insisted that I at least go so she could give me some antibiotics. We drove to the office almost without thinking–we had been there so often it had become a routine, a habit even.

I think I laid down on the bench as we waited for her to come into the room; I was sick, exhausted and in pain. I was focused on getting in and out as fast as possible–the blood test results didn’t even cross my mind. When Dr. B walked in she seemed…weird. As I talked to her about the sinus infection she was obviously distracted. She quickly promised me antibiotics and then took a deep breath. Was I crazy or was she fighting a smile?

I don’t remember her exact words. They should be ingrained in my mind, but I think the emotions of that day blurred everything else. The test results were back from D.C. They showed that my B cells don’t mature correctly, which means that the antibodies they produce, though enough in quantity, are crap. I imagined the command center of my immune system being run by a bunch of teenage boys–no wonder I was sick so much. My immature B cells probably couldn’t focus on anything other than food, sports and video games long enough to mount an appropriate defense against invaders…

I emerged from imagining the inner workings of my immune system to find that, oh poop, Dr. B was still talking. Luckily my mom was there to pay attention during my flights of fancy. My favorite doctor in the world went on to explain about Ig infusions–how they would be lifelong, but they could really help by providing my body with some antibodies not produced by teenage-boy B cells. Her smile faltered as she noticed the tears welling up in my eyes. Again mom came to the rescue and explained for me, since my brain had temporarily stopped manufacturing words, that they were tears of joy. I wasn’t crying because I’d have to do Ig infusions for the rest of my life–I was crying because I got to.

Super mom helped me out again as we walked out of the room, she said she’d take care of the check-out so I could go sit in the car. The warm car felt good to my fevered body; I shut the door and it seemed to wrap me in its sun-baked embrace. I sat there and I smiled and I cried. The spring sun made the world beautiful and light. I hadn’t noticed that before.

About a month later, the day before my eighteenth birthday, I had my very first Ig infusion.

Dante’s Inferno? Psht Try High School with PI

Seeing all the pictures of high school grads on social media has got me nostalgic for my own high school days, in the way that one might be nostalgic about food poisoning or breaking a bone….

I was first introduced to Dante’s Inferno my sophomore year of high school, which I thought very fitting as I was just beginning to realize the truth about my educational prison. As much as I disliked being forced to “read” Dante’s description of hell, I did allow that it was useful to be able to point out my current location on a map. As I looked at the drawing of hell’s many circles I imagined a pin with “you are here” stuck somewhere around the middle. But that was just english class.

Farther down, around circle eight was physics class. It was presided over by one of the hideous, horned demons of Dante’s creation. He was a bully and he hated me for the obvious and just reasons that 1) I missed class so much and 2) I wasn’t good at physics. He acted annoyed every time I approached him about needing to make up an assignment and he offered very limited after-school hours in which I was expected to do so. The only thing he communicated to me clearly was that he had no interest in helping me. In a subject I was already uncomfortable with, I was left completely on my own to learn weeks worth of material in a matter of hours. When I was there, he had no qualms about showing his dislike for me in front of the entire class and seemed to relish handing back assignments covered in derogatory red. He was hardly the first teacher to be unkind to me because of my health, but he was the worst. His class is the only one I have ever failed.

That was just circle eight though. The deepest depths of my high school hell was the attendance office. Not to be overdramatic, but if I had to choose a Satan from amongst the Tabb High School staff, it would be the attendance lady. I missed over 60 days of school my senior year and for every single absence, every time I came in late or left early, I had to face her. Every. Single. Time. Walking to her office with note in hand was like walking across the frozen lake right into the jaws of Satan himself. I never emerged from that grotesquely orange room without having been thoroughly chewed up and spit out by her gaping, drooling mouth and razor sharp teeth.

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A recent photograph of she-who-must-not-be-named. You can see my legs dangling from her mouth.

Boy oh boy did she hate me. To this day I don’t understand it–why or how any adult could harbor such antipathy towards an adolescent they hardly knew. She seemed to take it personally every time I was absent. She certainly made it VERY clear that she did not believe I was sick as much as I was. She put extra effort in several times to get me suspended for all my absences, and found any tiny loop hole to rule an absence “unexcused.” My parents had to go over her head to the principal to prevent this, but nothing they did could prevent the persecution she heaped on me any time I dared miss school–even if I had a 103 fever and double infection documented by a doctor’s note. If she could’ve, I’m sure she would have printed and distributed posters throughout the school with my face and “UNDESIRABLE #1” stamped on it.

The worst part of all this was that I wasn’t even diagnosed yet. I got asked all the time by kids I barely knew “why do you get sick so much?” It drove me crazy that they asked and even crazier that I didn’t have an answer. But at least I was only annoyed, not outright bullied by my peers. It was the adults that bullied me. They bullied me because I was sick and didn’t have a name for my sickness. They bullied me because they didn’t believe a teenager could really be that sick. They bullied me because they didn’t understand. They bullied me because I couldn’t fight back–because I was a kid and they were adults.

The thought that there are other kids going through the exact same thing right now kills me.

Keeping Chronic Illness Real: Augustus Waters and I Share a Thought

Just in case you’re not a teenage girl- Augustus Waters is a fictional creation from John Green’s The Fault in Our Stars. It’s a somewhat cliché story of two teenagers dying from cancer who fall in love, but I must admit I actually own both the book and the movie. I liked that Green at least made an effort to make it real–some of the thoughts and feelings his young characters express were very, very real to me. I’m not sure why but this morning I was thinking about the one sentence from that book that has stayed with me for the two years since I read it–a three word phrase that Augustus tearfully repeats over and over again when the weight of his illness is simply too much.

“I hate myself.”

“I hate myself I hate myself.” He says. He is upset because he wanted to do just one thing for himself and he couldn’t. He realizes his illness has taken his independence–has taken over his entire life.

I remember once thinking those exact words. I was in the shower, crying. I’d just had a wonderful day–I got to go on multiple walks in the beautiful spring weather and I’d gotten to eat lots of yummy food. I had done normal people stuff and at the time that still wasn’t normal to me. It was a month or two after I had started being able to eat solid food again–I know I haven’t really told that story yet, I will sometime–suffice it to say I had been very sick for about a year. At the point I found myself crying in the shower I had been getting better for a couple months. I’d just had a great day and I was miserable. It all still seemed too good to be true–a normal day, the possibility of a normal life again. Every day, every second, I was terrified that it would all disappear–that I would get sick again. I was so angry at myself that I couldn’t just enjoy it all, that I was so afraid all the time. I felt so small. I thought those three poisonous little words again and again as I sobbed.

The truth is I don’t hate myself. Sometimes I hate being me. Sometimes I’m disappointed that I can’t be stronger, braver or more patient. But I don’t hate myself.

When people tell me they admire how I handle my illness I shudder inside. I think of all the moments when I have been so small, angrily crying “not fair;” I think of all the times I have looked around at my peers with envy and bitterness that I cannot do what they can do, that I will never be one of them. I try to be positive and do my best with what I have, but I’m human. Sometimes I get so tired; I become a small, weak shadow that the better part of me loathes, but here’s the kicker: that’s okay.

It’s okay to get mad, to break down, to be small.

Moments like those, they always pass. They pass for me and they will pass for you too. Once they do we pick up, we go on. Some days that’s the best we’ve got. Why should we feel bad about not being perfectly strong or patient or whatever? We’re all just lost boys and girls, trying to present our best, bravest face as we look around hoping that someone else knows what to do.

We’re all a little lost.

There was a girl I knew at school. She had to use canes to help her walk and had a hard time speaking clearly. One day in church we were talking about gratitude and the teacher asked for examples of things we are grateful for. This girl raised her hand and said “I’m grateful for my disability. I can help other people like me. I can help people better because of my disability.”

Later that week I had one of my “when it’s all too much” breakdowns. My sister saw that I was crying and gently coaxed me until I haltingly choked out what was strangling me inside, “I just can’t do it anymore. I’m so tired of being in so much pain. I can’t be like Melba. I can’t be grateful for this.”

I can’t be grateful for my illness.

Look at that, I’m no angel. I used to hate myself for it, but what good does that do? Does it help me handle my illness better? No. It makes me feel depressed. It makes me feel like it’s all for nothing–all the struggle and pain. Well if it was my choice I wouldn’t choose it–life with a body constantly breaking down–but I do know it’s not all for nothing.

What’s it all for then you may ask? Well geez I’m just a lost kid like the rest of you, how’d you expect me to know? I’m just running on faith–faith in a God who loves me and knows what’s best for me–knows what all this is for.

 

 

 

Go Straight to the ER, Don’t Stop for Cupcakes

Saturday was something else. On the one hand, I might have a life-threatening blood clot in my chest; on the other–which I thought far more likely–I might die of old age forgotten in a quiet corner of the ER… One day nurse Brittney would walk into the hospital with that nagging feeling in the back of her head that she had forgotten something and then it would hit her– she’d run to my room and find the bones of me and my mother still patiently waiting for a CT scan. Then she’d shrug and call the janitor, “we forgot a patient again…”

At least that’s the scenario my imagination concocted as I sat in ER purgatory–waiting three hours for a fifteen minute scan, and then two more for results and ultimate discharge. Add to that the fact that we had already started the day off with three hours at the minor emergency clinic and you might understand why I was, at one point, considering just taking my chances with the blood clot.

My fun Saturday started with waking up in the middle of the night to a collection of uncomfortable and confusing symptoms: sweats, chills, lightheadedness, nausea and chest pain. In my world the first four mean I have an infection of some sort. But the chest pain, in absence of a cough, was totally new. Plus it was only on the left side, which is also weird. I tried unsuccessfully to get back to sleep until about 8:30am, when I sighed, sat up and accepted that a trip to the doc’s was unavoidable. I talked to my mom, and she generously offered to accompany me. We decided to try the minor emergency place first, as we were not ready to resign ourselves to a day in the full-on ER just yet.

At 9:30 we walked into the Urgent Care, just as we had about a hundred times before–in high school, before I was diagnosed with PI, this place was my life–and were dismayed to find it unusually full for a Saturday morning in June. A sinking feeling settled in next to my throbbing chest, a grim foreshadowing of the day ahead.

It is certainly a rarity for me to go in to someplace like MD Express and not know already what is wrong with me, but Saturday was an unusual day all around. The PA I saw was very kind and tried to help me out, but he was also perplexed. They stole my blood and pee for science (Andy Dwyer quote people) and did a chest x-ray. Everything looked pretty good except one blood test, perhaps the only one in existence that I haven’t had before, the D-dimer. Apparently it is used to check for the possibility of a blood clot. Normal level is below 600, mine was 2,160–so not normal. When the doc told us he explained our sentence–we were condemned to a day in the depths of the ER. He said he wouldn’t make us ride in an ambulance as long as we promised to go straight there and not stop for a box of cupcakes–if I did have a blood clot it could be very dangerous.

Well we didn’t stop for cupcakes, but we did stop by the house to refuel and stock up on supplies for the day ahead. Technically I guess I should have been scared I might drop dead at any moment, but being cold, hungry and thirsty overrules fear of death any day. We got to the ER and were taken back to a nice quiet corner room pretty quickly, which filled us with false optimism. They stole seven more vials of my blood via the largest IV needle and catheter I have ever seen and hooked me up to all the heart monitor stuff. The doc also came by the first time pretty quickly; she said she’d order a CT scan, etc. Then we watched the grass grow faster than the CT machine became available. Eventually I did get wheeled back to get my scan and was unhappy to learn that it was with contrast–the IV contrast stuff they use makes you feel really weirdly hot and gross and like you’re peeing your pants. Back to the room. Look at that grass grow.

After another good stretch the doc came back with the good news–no blood clot! And then the bad news–that means we have no idea what is wrong with you. And then the medium news–I’m prescribing you an anti-inflammatory to help the chest pain and prevent clots. And then the best news–the nurse will be by soon to discharge you and then you can get outta here! When we left at six, poor nurse Brittney still had nine hours left in her shift. I felt bad leaving a man behind, but we had to make our escape while we could. I’m sure she understands.

 

This Won’t Hurt [Me] A Bit

Says every surgeon ever. I’ve had three surgeries now and while they happily describe cauterizing the bed of my liver or cutting bones from my nose there is one word they noticeably avoid in connection with cutting me up: pain. They speak of “discomfort” and “soreness,” and somehow always manage to skirt the “p” word. I guess they’re afraid that ms-8GQ8rTif they’re honest about how surgery makes you feel they’ll be out of a job–as if the general population isn’t intelligent enough to realize that being cut and cauterized and debrided and stitched and stapled is going to cause pain. Of course once they’ve actually had the surgery the patient will be very aware of just how far the term “soreness” is stretching it, but that’s not really the surgeon’s problem anymore right?

I’m being passive aggressive. Maybe I should just tell you the specific reason I am annoyed at my surgeon, and surgeons in general, at the present moment. Of course having had two surgeries in the past I was already aware heading into this one of the surgeon’s code–I knew that “discomfort” meant I’d be in significant pain–but really I couldn’t have foreseen this particular scenario:  I’ve been having a reaction to the pain medicine my surgeon prescribed me. It makes me itch all over like crazy, even when I take Benadryl. Tuesday I called my surgeon’s office and told them this, hoping that I could get a different medicine to help with the pain, but not cause me to scratch myself to death. Their obnoxiously polite response was that I could try taking more Benadryl and if that didn’t control the itching I could try taking Ibuprofen instead of the narcotic pain killer. And let’s not forget the suggestion that I should really be tapering down my pain meds anyways because “most” people experience the worst pain in the first couple days–essentially “stop being a baby.” Needless to say I was unhappy with their insulting and useless advice. Especially when I did try just taking Ibuprofen and discovered that I had not turned the figurative corner I supposedly should have floated around by then–my abdomen still freakin hurt.

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So I was left to struggle on my own–attempting to find a balance between pain, itchiness
and drowsiness that I could handle. Yesterday I think I finally did drag myself around that magical corner and the pain poofed suddenly into soreness (actual soreness not a surgeon’s “soreness”) that can be mostly managed by Ibuprofen.

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Today is one week post-op and I feel a million times better than I did just a couple days ago. I’m eating a moderate amount, although I still feel overly full and a little sick every time I do eat. My stomach has deflated pretty much all the way and I just have a little residual swelling from my insides being poked and prodded. I’m still much more tired than normal, even without pain killers and Benadryl combining against me; if I make it, today will be my first full day without any prescription pain meds whatsoever.

Before the surgery I read accounts of people who said they only used narcotics the first day or never needed them at all–as Hagrid might say, that’s codswallop in my opinion. Or as I might say, that’s stupid. *Steps on soapbox* Everybody on the internet is trying to sound tough and it gives people unrealistic expectations. With my first two surgeries I tried to do the same thing–prove how tough I was by using as little pain killers as possible–but I learned that it just delays healing and makes you miserable. Being in a lot of pain puts extra, unnecessary stress on the body that makes it harder to heal. Plus when you’re in more pain you’re less likely to do things that are good for recovery like get up and walk around, get enough sleep and even eat. So take it from me and just take the meds. Ok rant over. *Steps down*

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Incisions Update:

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1 week post-op tummy–not too shabby eh?

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Close up on oblique incisions 

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Close up on belly button incision–can you believe they got my gallbladder out through that little thing?

A Lap Chol Tale–Nieces Make It Better

Ok so this post is going to be interesting. The plan is to write some today, some tomorrow before and after surgery. We’ll see how it goes. By the way Lap Chol stands for laparoscopic cholecystectomy- which I can neither say nor spell without help so I’ll stick to the abbreviation.

Thursday: Prepping for Surgery

I’ve had a running list this week of stuff I need to get done before tomorrow: laundry, change sheets, vacuum, charge electronics,  shave legs, acquire necessary post-surgery food and drink supplies, do as much yoga as possible (before I can’t for a while), try very hard not to have another bad gallbladder attack, do pre-op interview and blood work,  etc. I am also doing my IG infusion tonight as I doubt I’ll feel like doing it tomorrow.

I’m weirdly excited for tomorrow–the kind of excited I suppose a pregnant woman feels when she’s finally going into labor. No matter the pain ahead, I want this thing out of me! (Except it would be totally weird and gross if they handed it to me afterwards).
My family has joked that I should ask for my gb after the surgery–I could take it home and set it in a jar on my bookcase. They think they’re so funny. *Rolls eyes* Well I have always admired Severus Snape’s interior decorating skills. I guess now’s my chance to get
the authentic creepy-guy-in-a-dungeon look.

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Friday: Surgery Early this morning I woke up and the butterflies hit me hard. I finally gave up on sleeping and watched videos of my six-month-old niece on my phone. My older brother, sister-in-law​, younger sister and I all shared a house up at school this past year. Second semester (she was born in December) if I was really nervous or stressed about something it always helped to hold my little squishy for a bit. Since we’re separated for the summer, videos had to do today. I felt much better after watching her try to sit up and grinning as her parents squished her cheeks with kisses.

I didn’t actually get a chance to write before the surgery. I didn’t wait in pre-op very long before they brought mom back, which was totally not my experience with my other surgeries.

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Making important life decisions while waiting in pre-op

While we waited together my mom drilled me on what I want to get my masters and PhD in. I told her I figured it’d be ok if I didn’t figure that out before they took me back for surgery… We were waiting for a while.

Not long before they wheeled me back my sister sent me pics of her two little girls. My 20-months-old niece was trying to walk in her daddy’s shoes while her new little sister watched her with wide eyes from her swing. I was still smiling when they came to wheel me away.

My doc said the surgery went very smoothly. Unlike my previous surgeries, I didn’t even realize I was going under in the OR. I remember taking some deep breaths of oxygen on the operating table and then waking up to a recovery nurse telling me I needed to breathe slower. I also had a much harder time waking up from the anesthesia than I have from my previous two surgeries. I’m always very clear headed–no funny drugged stories from me sadly–but this time all my body wanted to do was go back to sleep. It was also the first surgery I’ve been in significant pain as soon as I woke up. My shoulder and back hurt really bad from the gas they had pumped into my abdomen so they could see what they were doing. I really wished I had thought to bring along some Gas-X or something. They gave me my first pain pill while I was in recovery but it didn’t do much for the gas pain. I took gas medicine as soon as I got home and within half an hour the pain was all but gone. So far the gas pain has been the only thing to come close to the pain of an attack.

I got home at about noon- having reported to the surgery center at 7:45 in the morning. I got situated in the recliner, and once the meds kicked in and my pain eased up I dozed off and on while Bones solved crimes in the background.

By this time my 20-months-old niece was up from her nap. She saw me sleeping in the recliner and thought I was playing one of her favorite games- “nigh nigh,” where you pretend to go to sleep and then pop up and squeal “wake up!” Everytime I closed my eyes I’d hear the rapid pitter patter of tiny feet come up to the side of the chair, followed by a careful pause as she stood and watched me with her big, brown eyes. Then she’d get her little curl-covered head as close to mine as she could and squeal loudly, signaling me to pop my eyes open and yell “wake up!” It hurt to laugh, but it still felt good, if that makes sense.

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I got holes in ma belly

Saturday: Day One of Recovery

Last night I didn’t get much sleep. It hurts a lot to lie my side, which is how I always sleep. When I finally did fall asleep I woke up a couple hours later because my body was complaining that it was overdue for another dose of pain medicine.

I haven’t been hungry at all. Yesterday I just drank Gatorade and ginger ale; today I forced myself to eat some Jell-O and Cheerios because I was getting a lack of food migraine, but I’m still not hungry.

I spent most of the day in the recliner watching Harry Potter and Bones and napping. My abs definitely hurt when I move, but it’s not agonizing. It feels a bit like when I put my IG needles in a bad spot on my tummy and they rub against the muscle– at least that’s how it feels as long as I keep up with the pain meds.

They put water proof bandages over the 4 incisions in my belly so I got to take a shower today. It especially felt good since I’ve been feeling itchy from the pain meds–apparently it’s a pretty common side effect of narcotics. Just another reason not to like them I guess.

Sunday: Day Two of Recovery

Last night I slept much better and today I finally felt a little hungry–so we’re making progress. Otherwise it was pretty much post-surgery business as usual: recliner, tv, naps; I was not surprised, but still a little bummed I didn’t feel like going to church.

My incision sites are more sore today and I’m beginning to see nice little bruises blooming under the edge of the bandages. So far I haven’t actually been feeling a ton of pain where my gallbladder used to be, which surprises me. But hey, I’m not complaining.

Monday: Day Three of Recovery

Last night I fell asleep about an hour before I was up for my next dose of pain meds and then I slept for a good twelve hours, so I was seriously feeling it this morning when I woke up.

Once the meds kicked in I had a small cup of cheerios with blueberries and I am seriously stuffed.

A nurse called to check on me this morning and told me I could take the water-proof bandages off. As you can see my tummy is still pretty swollen–I’m having a hard time getting all the gas out. I thought my belly button incision would hurt the most because it’s twice as large as the others, but actually the little ones on my right side have been the most painful so far. Yesterday I was also running a bit of a fever, but the doc said that’s normal as long as it’s below 101.

Ok who’s ready for a nap? I know I am.

Photo on 6-5-17 at 12.36 PM

These holes are so much smaller than they feel