Skip to content

Of Ulcers and Life

Hello my friends! I know I’ve been neglecting you and for that I’m sorry. The funny thing is, during the summer I mostly felt crappy, and therefore didn’t feel like blogging. And then so far this fall semester I’ve been feeling pretty great, and so haven’t really felt like blogging…

But here I am. Back again. Like I said, so far this semester I’ve been feeling so good! I’ve only had one sinus infection and one cold; cold bugs have been flying around school like crazy, but miraculously, I’ve escaped them for the most part. In addition to regular school stuff, I’ve been able to walk and/or do yoga consistently for the last 2.5 months, and I’m working towards starting a run/walk program here in a couple months. My goal is to be able to jog a mile straight by my birthday–a very modest goal, but its something I haven’t been able to do since I was a brand-new 19-year-old–just before I got sick.

This semester I also (reluctantly) agreed to be the French tutor. I didn’t know how I’d be able to do it–I was afraid I’d have to cancel all the time and it’d be too much for me, etc. That’s another little miracle I’ve seen this semester: I’ve only had to cancel tutoring once. Once! And I’ve even moved from once a week to twice a week. Still, very, very modest hours (3 per week), but sometimes it feels like a lot all the same. But I’ve been blessed to be able to do it.

Now I don’t think I’ll be getting any awards for “greatest tutor” or anything–tutoring, like almost anything that includes human interaction, doesn’t exactly come naturally to me. Like the other night I had three students from French 1 and one from French 3 come in all at the same time, and I felt totally overwhelmed. But, in a way, I do feel that living with my nieces has prepared me somewhat for those kinds of situations–four students all wanting their own questions answered, etc. at the same time is kind of like having two to three toddlers talking to you and pulling on your finger, your pants, your arm. Someone wants a sippy cup refill, someone wants to show you something; someone wants to go over the homework, someone wants practice questions for the quiz…. You get the idea. The students are generally quieter and more patient though.

That’s part of what I wanted to write about today. The beauty, the blessings, the little miracles that have filled me to the bursting the last couple months. But strange as it may seem, I also wanted to write about ulcers–peptic ulcers, to be specific.

Ulcers are mainly what made me miserable this past summer–the ulcers themselves first, then the medicines to treat them and of course the avoidance of all NSAIDs–which enraged my migraines. Basically, my stomach stopped trying to kill me, but then my head took up the cause. But then my body adjusted, my ulcers seemed to heal, I was able to go off PPIs for a while–everything was awesome! Until about eh, a week or so ago. I started waking up in the night again with that feeling of a hole being burned in my stomach, and then it evolved from simple burning to straight-up knife-in-the-gut stabbing. And then my stomach started bothering me during the day as well as during the night. A couple days ago I finally admitted defeat and started back on the PPIs–but unlike in the summer, when they gave me almost instant relief, they don’t seem to be helping as much.

Basically my digestive system is very angry with me. And I’m not looking forward to going back to the doctor’s and starting the cycle again–the appointments, the tests, the “let’s try this” and “lets try that.” But I know I need to go, and so I will.

I get so tired of doctor’s appointments.

But let’s not end on that note… Let’s see…. A happy note to end on. Falls out here in the Blue Ridge Mountains are GORGEOUS. Seriously, it’s like living in a painting–the thousands of trees and their millions of leaves each a unique hue of yellow, orange or red. And then they fall off and dry out and make that amazing CRUNCH when you step on them. And the air gets crisp, but not to the point where it stings yet.

Yes. I think that’s a good spot to end.

Summer Update

Hey all! As you may or may not have noticed, I’ve been taking a break from blogging for most of the summer. In about two weeks the fall semester starts up and I’m excited to get going with my classes. So here’s a recap of my summer:

MAY

  • Finished spring semester.34859953_10155858655286785_2505407728319463424_o
  • GI appointment- started taking acid-reducing meds and stopped taking all NSAIDs on the assumption my abdominal pain= peptic ulcers.
  • Neurology appointment – talked about trying new migraine drug Aimovig when Dr. L get access, follow up in August for that purpose.
  • First appointment with Urologist because of frequent UTIs.
  • Got job as freelance transcriptionist with Rev. Started doing that.
  • Also got job as freelance copywriter, started doing that as work is available.
  • Went kayaking for the first time!

JUNE

  • Working and stuff.

    IMG_2455

    We did forget to wear our Gandalf costumes though… Next time.

  • Turned 23 (I know, I know, I look like I’m 18 still).
  • Got a sinus infection that took 5 weeks of antibiotics + 1 week of steroids to clear up.
  • Went horseback riding for the first time! What?! It was awesome and it turns out
    I’m not even allergic to horses!
  • Cystoscopy. Umm, yeah not fun, but not as bad as I worked it up to be. Of course everything looked fine so back to square one (no idea) on the UTIs.

JULY

  • Working and stuff.
  • Yeah not too much to report from July.

AUGUST

  • Came to the parental’s for a couple weeks.
  • Appointment with Dr. C (allergist/immunologist). Because of Dr. C and his staff’s tireless efforts and benevolent harassment of Aetna personnel, I got approved to switch to Cuvitru! (I did a free trial of Cuvitru in April and I tolerate it much better than Gamunex)
  • First shipment of Cuvitru, first Cuvitru infusion. No more 3-hour infusions! No more infusion hang-overs and migraines! Woot woot. I really love Cuvitru if you can’t tell.
  • Appt. with Dr. L (neuro) again- got ball rolling to start Aimovig. It’ll probably be 2-6 weeks before I get to start and then it takes 1-3 months to see full effects, but I’m excited to try it!
  • Watched a bit of my little bro’s JV football scrimmage – he scored 3 touchdowns, like a beast, but only after we’d left of course.
  • Next week: get to move into new place at school.
  • Two weeks: fall semester starts!

 

So yeah there’s my summer in a nutshell. It’s been good. Not the most exciting summer, but good. I’ve especially enjoyed working as a freelancer – remote work where I choose my own hours has been so awesome and allowed me to work over the summer for the first time ever!

My tummy is doing better, but after three months I’m still having to take acid-suppression meds morning and night, and stay away from all NSAIDs. Thankfully, I have found some natural remedies that help a ton. I’ll write about those next time maybe.

Hope your summer is going well!

Gallbladder Pain, But No Gallbladder…

A few months ago I started having episodes of intense abdominal pain, often accompanied by nausea, that were reminiscent of the gallbladder attacks I had last year. The only problem is, obviously, I had my gallbladder removed. So it shouldn’t be hurting…

It Feels Like a Bad Gallbladder, But Doesn’t Act Like It.

This pain was a little bit different than with my gb. There were no consistent food triggers I could find. Sometimes any food would cause pain, sometimes lack of food would cause pain. This is in contrast to gallbladder attacks being fairly predictably caused by food, especially fats.

Like gallbladder attack pain, this pain almost always started in my upper right abdomen, under my rib cage, but would spread towards the middle and to the left. And I swear it felt almost exactly like the intense, stabbing, bursting/pressure type pain I would get from my lousy gallbladder. It was seriously so weird.

By April I was waking up every night with pain that would keep me up for at least 30 minutes, often a lot longer. During the day my stomach seemed to disagree with everything and I was taking Zofran just about every day to manage the nausea.

I even ended up in the ER for an episode of pain and nausea the evening before my finals started (around the same time of year I went to the ER last year for gb stuff, though I didn’t know it was that at the time). The folks at the ER were also confused, because my pain sounded just like gallbladder pain, but… no gallbladder…

Hmmm, Ulcers Maybe?

867FF43D-D3F6-4849-8020-98D406B7BD07.gifWell I got in to see my GI shortly after finishing my finals. I experienced some serious dejavu–one year later, same time of year, same office, same GI, same symptoms. She even said basically the same thing as she had one year before: she suspected ulcers. So she wanted me to try acid suppression medication to see if it helped and we would also schedule an ultrasound of my biliary system.

The thing is last year I tried the acid suppression medication and it didn’t help. In fact it made me feel lousy. And then we found out she was wrong and it was my gallbladder. So I was not surprised, but not thrilled when she said the same thing again.

This time though, the trial ulcer meds really helped. The first day I was on them I slept through the night, without being awoken by pain, for the first time in weeks and weeks.

So we’re doing a month worth of treatment with Prilosec in the morning and Zantac at night and then we’ll see where we’re at. If my symptoms return I’ll probably need to have an upper endoscopy to actually see what’s in there and test to see if I’m infected with H. Pylori–one of the most common causes of peptic ulcers.

No NSAIDs For Me. Good Thing Tylenol’s So Effective…

In the meantime I’ve been instructed to stay away from all NSAIDs. My frequent use of NSAIDs for migraines is one of the things that has caused her to suspect ulcers (twice). Certainly they could be a problem. But staying off them is no easy thing. Even though my migraines are doing better with a preventative regimen of Prozac and Verapamil, and especially since I started Concerta for my ADHD, my head still hurts a lot. And Tylenol is not super helpful. But so far I’ve been able to manage. Thank goodness it’s summer.

My Top Ten Tips for Tummy Troubles

Intestinal cramps, gas pain, constipation, diarrhea, nausea, indigestion, heart burn, bloating… The list of ways your digestive system can cause you discomfort goes on and on and on, and pretty much everybody suffers under an unhappy digestive system at one point or another. As one who has racked up some serious frequent flier miles at the GI’s office over the last few years, I have learned a lot of insider tricks that I wish I would have known from the start–they would have saved me some serious misery. So here’s to hoping I can at least help some of you when the occasional (or not so occasional) digestive woes hit.

  1. Ginger, Ginger, Ginger!
ms-1AoEo2

Not that kind of ginger Ron, don’t worry

A couple of years ago I sustained some serious nerve damage in my digestive track from an infection that left me with “mild” gastroparesis and constant, crushing nausea amongst other things. I found ginger seriously helps with the nausea. Fresh ginger is best–I like to heat up water and put some cut up ginger in it. Let it soak, add a little honey and then sip til your tummy is happy again. Ginger Ale is also good, but make sure you get the kind with real ginger in it. You can also get ginger “candy”–I like Gin Gins Ginger Chews–but those are pretty spicy so I wouldn’t use them when your stomach  is seriously upset. They are awesome for motion sickness though. Really ginger is just all around a life saver when that sick feeling hits your stomach.

2. Peppermint Oil

Guess what else happens when you have nerve damage to your digestive track–cramps! Horrible, wrenching, gut-twisting cramps that leave you gasping in agony. Seriously, some of the worst pain I have ever experienced was from intestinal cramps. Luckily I eventually found peppermint oil, and we are very happy together. Nothing–no prescription or OTC meds–cut the cramps like peppermint oil does. It also helps with relieving gas, nausea and diarrhea. When I start getting that tugging feeling in my intestines I rub 3-5 drops of peppermint oil into my entire stomach area, moving my hand in a clockwise circle. Every essential oil I have ever bought says not to apply it directly to the skin, but to use a carrier like coconut oil–I have never not ignored that and so far I have lived. If you have super sensitive skin though, you might want to heed their warning and try it with a carrier oil first.

3. Probiotics 

This is an especially important one if you ever find yourself needing a course of antibiotics; before I learned about probiotics I would get really bad diarrhea whenever I was on antibiotics (which was almost constantly before I got diagnosed with PI). This is because antibiotics, in addition to killing the bad, infection-causing bacteria, wipe out the   good bacteria in your intestines. Probiotics help replenish these good bacteria so you can digest your food properly. Even outside of antibiotic use, probiotics are helpful for promoting proper digestion and boosting your immune system–70-80% of which is in your gut. I take a probiotic supplement everyday, and if I’m on antibiotics I double or triple my normal dose. Unfortunately probiotics can be pricey, but you don’t need the crazy expensive kind to see benefits–just be wary of super cheap supplements with a low cell count and only one type of organism. I stick with middle of the road supplements like Accuflora and Phillip’s Colon Health. Supplement this with probiotic rich Kefir and/or Kombucha and you’ll be on your way to a happy gut! Kefir probably wins out in functional probiotic content, but Kombucha has the added benefits of digestive enzymes. So I use a mix of both.  (My favorite Kombucha is GT’s btw).

4. Fennel Oil

ms-mufLsy

Fennel oil is great for relieving gas. Apply to the abdomen in the same way as the peppermint oil and fart away! You’ll feel so much better- let it go!

 

 

5. Yoga

Yoga can help digestion in a lot of ways, but I especially use it when I’m constipated, bloated or gassy. Type “yoga for digestion” into the youtube search bar and you’ll have tons of digestive friendly routines to choose from at a variety of difficulty levels. My go-to is Yoga with Adriene–she has several digestive/detox flows that help me every time! There are also some specific positions that can be utilized on their own to provide quick relief–like the figure-four stretch to relieve gas quick.

6. High-Calorie Shake for Gastroparesis and Gaining Weight

For my gastroparesis buddies or people who need to gain weight here’s my top-secret (not really) shake recipe that I survived on for eight months when my stomach couldn’t handle solid food:

  •  1 banana
  • 1 Ensure/Boost (high calorie kind)
  • 1 serving of favorite protein/nutrition powder (I like Orgain and VegaOne)
  • Several scoops of soy or coconut ice cream (or regular if you can tolerate it)
  • About a tablespoon of sunflower seed butter (could use peanut/almond butter)

Blend together and enjoy. Of course, I always used chocolate flavored everything, but you can use any flavor you like I suppose.

7. Apple Cider Vinegar

ACV is great for indigestion, heart burn and a sour stomach. It’s really important that you get the organic/all natural kind with the mother–it’s way more effective. The taste is pretty potent, so I always mix it (1-2 tablespoons of ACV) with a glass of water (heated), some lemon juice and a generous amount of honey. Sometimes I add fresh ginger for an extra kick of stomach-calming power.

8. Miralax

When you have to reach for a laxative, Miralax is your best bet. It’s not painful or habit forming like other laxatives because it doesn’t stimulate your colon to contract, it just draws water into it to make everything flow easier. A trick I’ve recently learned is that, especially if you’re like me and have to take Miralax on a regular basis, it’s best to take it at night. When I took it in the morning I had to take double the normal dose to make things flow normally that day; now I take a normal dose at night and things always run smoothly the next morning. So essentially you can half the dose you need when you take it at night, because it gives it more time to work. Also don’t pay for the name brand if there’s a generic–they’re the exact same thing but you pay extra for the “Miralax” on the bottle.

9. Allergy Friendly Foods I Love

ms-NX1khDWhether you have actual allergies or intolerances, eating the wrong foods can bring on a lot of bodily distress. I have a long list of foods that I avoid–some allergies, some intolerances. Here are some of my favorite allergy/sensitivity friendly items:

  • Enjoy Life Chocolate Chips: The only completely dairy and soy free chocolate I’ve been able to find (also gluten-free and nut-free)
  • Sneaky Chef No-Nut Butter: This stuff is seriously awesome. It tastes like a nut butter, but it’s made from golden peas! No nuts, soy, or seeds!
  • Luna Bars: If soy is a no-no for you then so are these, but they do have a couple totally nut free varieties (with 8 grams of protein)
  • Kind Breakfast Bars and Healthy Grains: Also have some totally nut free varieties that are also gluten and soy free.
  • Cheerios: Almost all types of Cheerios are now gluten-free! Mmmm tastes like childhood!
  • Annie’s GF Bunny Cookies: Gluten-free, not crazy high on the sugar or fat content, and delicious! These are my newest addiction.

 

10. Tummy Drops

Tummydrops-Ginger-and-Peppermint-Reviews

Click on pic for link to tummy drops at Amazon

I saved the best for last. I first tried tummy drops a couple years ago and they’ve saved my tummy many a time. I always keep both ginger and peppermint tummy drops on hand–some at home, some in the book bag, some in the purse–wherever I go, they go with me. They were created by two doctors–one a GI specialist, one an avid cook–so they taste good, but more importantly THEY WORK. Ginger tummy drops are wonderful for nausea and motion sickness; they work better than anything short of prescription anti-nausea meds. The peppermint kind are powerful against intestinal cramps, urgency, bloating and a mildly upset stomach. They’re great as a tag-team with peppermint oil application or for when you’re in a situation where you can’t exactly lift up your shirt and start rubbing oil all over it. Sticking a drop in your mouth is a tad more discreet.

So there you go. My top ten tips for tummies are now yours to try!

ms-ucMfv2

 

 

 

 

Another Not-So-Smooth Start to a Semester

If you’ve been following me for a while you’ll remember that my last semester started off with being unable to get my infusion for three weeks and then coming down with whooping cough. Needless to say I was hoping for things to go a bit smoother this semester. But that’s not really how life works I guess.

Thursday was our first day of classes. I had three classes (French, Screen Writing and Dramatic Literature) and a meeting to update my accommodations letter. While I was in Screen Writing I got the bad news–my sister and niece had started throwing up after I left for class. We had the dreaded stomach flu in our home.

The last time I had a stomach virus I was a brand-new 19-year-old. That virus damaged my digestive system, causing gastroparesis (literally “stomach paralysis”), and leading to some very miserable months and ultimately two years away from school. So naturally I have an intense fear of dear old norovirus and all its relatives.

Egged on by this fear I did everything I could to avoid coming down with it this time img_0084around, but by the time I became aware of its presence it was far too late. That night around 9:30 I threw up for the first time. And then again. And again. And again. Until about 5 or so in the morning. *shiver* The stomach flu is the WORST. Every time I have it I get like minor PTSD where for a while I can’t stand certain foods, clothes, tv shows, movies–anything that is associated with the experience. This is especially true for the virus that permanently messed up my digestive system and changed my life.

EA57ED6A-C454-4F26-A275-0833E9EACA3BBut like I’ve said before, even the worst of things pass, and so did this. Well it’s passing. Friday I was still quite sick and miserable, even though I had stopped involuntarily ejecting the contents of my stomach and intestines. Mostly I had gotten really dehydrated and I was having a hard time getting sufficiently rehydrated. I ended up going into the local urgent care in the afternoon because of this; they did not give me a saline IV as I had hoped they would, but they gave me some strong anti nausea medicine to help me be able to sleep and drink more. I hadn’t slept since Wednesday night so I was beyond exhausted. Later Friday (about 4), I laid down to take a nap and woke up at 9:30 the next morning!

Right now as I write this, I am doing my infusion. I didn’t want to do it until I was well hydrated again, since insufficient hydration makes the infusion process (and aftermath) seriously miserable. And I’ve had quite enough of that this weekend.

So yeah, another rough start. But I don’t think it bodes ill for the semester at large–I think it’s gunna be a great one, as a matter of fact. Because, well, why shouldn’t it be?

You Can’t Go Back

The other day I got some good news. When my dad got home from work I excitedly told him about some extra scholarship money I’d been awarded because of my academic performance. My 14 year-old brother, who was in the next room playing Battlefront (and evidently eavesdropping) said, “you should get a scholarship for sports.”

I pointed out the teeny flaw in that master plan: “I don’t play sports anymore.”

Look we all know that teenage boys can be more than a bit obtuse, and my little bro is no exception. Currently he is in the sports, fitness and body image obsessed stage. He tells us how he is “teased” by his friends about his muscles being too big; he works out way more than he should, and he flexes A LOT. Another thing he does a lot is make insensitive inquiries such as, “when you gunna start running again?” Or, “Are you ever gonna play basketball again?” And even,” When you gun’ get back in shape?”

I get it. He misses the older sister that he could be proud of. He misses the girl that ran five miles a day and was known for her white-girl hops on the basketball court. He misses the sister that could do as many pull-ups as the boys and who’s life revolved around the court and the gym.  I get it because I miss her too.

I also get that it’s much cooler to have a sister who plays college basketball than one who gets good grades and blogs about being sick.

I get it, but he doesn’t. I’ve tried to explain it to him several times: “I’ve tried to get back in shape but I keep getting infections.” Or, “I’m trying but my body gets very sick if I work out too hard now.” And even the hardest one, “No, I don’t think I’ll ever play basketball again. Not for school anyways.”

He doesn’t understand how before, even with the PI, I could do all these things (even though he doesn’t realize what a struggle that was) and now I can’t. For a while neither could I.

Then I figured it out: you can’t go back.

I can’t go back. My body’s not the body it was before I got sick. I’m not the person I was before I got sick. No matter what I do, I can’t erase that year.

167560_187667167923947_1154328_n

My parents weren’t good at action shots, so they had to wait for a FT. Also I think a teammate’s parent took this.

Years of running, lifting, sprinting up and down the court–they’re all gone, unraveled and eaten away by months of deconditioning, sickness and undernourishment. The muscles I worked so hard to build over years of training were metabolized to keep my organs going. My heart, which once propelled me through miles with ease, withered and weakened so much that mild cardio now gives me shaking chills. It’s like the first 18 years of my life never happened–like the strong, athletic version of Miranda never even existed.75051_530260573738353_2147077193_n

On the other hand those long, lonely nights when I was too sick to sleep–they’re with me still. They’re with me when I close my eyes. They’re with me when I walk through the Blue-Ridge sunshine to class. They’re with me as I smile down at my sleeping niece. They’re with me when I feel, as I often do, full to the bursting with a life worth living. Those nights, those hardest moments of my life, they’re a piece of me now.

You can’t go back.

So you go forward.

I can’t play basketball anymore, so I put everything I’ve got into my school.

I can’t run out my feelings anymore, so I write.

I can’t do intense workouts anymore so I do yoga, walk, bike and build up slowly.

I can’t work as hard at a lot of things as I did before, so I work smarter.

I can’t be the person I was before so I try to become someone better, someone stronger, someone kinder.

You can’t go back. It’s hard, but it’s probably a good thing.

 

 

Why I Disappeared for Two Years–A Gastroparesis Tale

July 2014:

“She’s lost over twenty pounds since she was here in May.”

Worry in my doctors eyes.

“It could be cancer, it could be an autoimmune condition–we’ll know more when we get these tests back.”

Fear in my mother’s.

“I don’t think you’re going to be able to go back to school this semester.”

Tears of frustration in mine.

1 Month Previous:

Our health insurance provider did what they do best, that is screw up. The date by which the approval for my infusions expired came and went, and they hadn’t processed the renewal. Because of this I had to go about three weeks without an infusion. I caught a stomach bug–bacterial or viral we don’t know–but it was the worst I’ve ever had.

Once the worst (spewing vomit) was over I recovered pretty normally for a couple of days. Then I just stopped. I was weak. I was nauseous all the time. Eating was agony–hunger pangs were nothing in comparison. Being up made everything worse and I passed out a couple times. I kept expecting it to pass, but it just kept getting worse.

October 2014:

“Miss Macfarlane are you a diabetic?”

Uh no, no I am not.

41eb9520544337e2e71288806fa53c39--so-hungry-fodmap

“The test showed your stomach is emptying too slowly.”

Gastroparesis? What the heck is that?

“It’s common in diabetics because high blood sugar damages the nerves controlling the stomach.”

Ok, but we’ve been over this. I’m not a diabetic.

“Sometimes similar nerve damage can occur from a GI infection.”

Hmmm you mean like the stomach bug from hell I had a couple months ago? That sounds about right.

January-February 2015:

My local GI doc was at a loss. The meds he’d tried me on had helped very little. I was still losing weight, I still couldn’t handle solid food, I was still miserable and sick, sick, sick. He decided to refer me to VCU.

My first appointment at VCU I met with the head of the GI department. He referred me to endocrinology and immunology at VCU as well. I had a consultation with a nutritionist–she was impressed with the shake my mom and I had come up with and didn’t have much to add. (For my gastroparesis shake recipe click here)

The GI said that if I was any other patient, he would put a J-tube (feeding tube that delivers stuff straight to the small intestine) in me right away, but because of my immunodeficiency he was afraid to–I’d be at high risk for a serious infection from it. We agreed that if things hadn’t improved in a month or so when I came back, we would try it anyways. I was desperate to stop losing weight–the more weight I lost, the sicker I became.

By the time my follow up came around I was doing a little better. The scale showed that I had managed to gain a pound. I felt like I had scaled Mt. Everest. It was the first time in nine months that I had not lost weight.

I met with a Nurse Practitioner in the GI department. She tweaked my meds, and was the first genius to think of giving me prescription anti-nausea pills. The changes she made worked. I started being able to eat solid food again in March 2015.

…..

It took me a few months to gain back about half the weight I had lost, which put me at a good, comfortable, healthy weight. The rest of it I still have not gained back as it was mostly muscle I had gained playing ball my freshman year at SVU.

Even once I had achieved my goal weight and was back on a fairly normal diet, my body didn’t bounce back to its former self like I’d hoped it would. It took me another year to get strong enough to go back to school. Even now, after two years with good control of the gastroparesis, I struggle–my body just isn’t the same. It probably won’t ever be, but that’s ok.

I’m learning it’s ok.

 

 

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.

ms-LXU4Mk

Until then this is me

Thursday June 22nd: 

ms-N1IzVA

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.

Unknown

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…

ms-PsZFGE

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.

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.

ms-XDXt4V

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.

ms-QCGaJf

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*

ms-VDmgqc

Incisions Update:

IMG_0159

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

IMG_0161

Close up on oblique incisions 

IMG_0160

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.

ms-yzvKgd

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.

IMG_0145

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.

IMG_0148

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