Waiting.

I was going to write a post about my worsening depression. How being unable to feel productive and capable of doing the things I need to be able to do, and once could do so easily, was driving me into a deeper pit of melancholy and despair. But I didn’t. Because the depression robs me of my ability to get things done just as much as my other ailments.

And then I had a [mildly] productive week. I called Dr. S’ office to check on the neurology referral… which I am still waiting on. They were apparently playing fax-tag with my medical records when I called early last week, and I haven’t heard anything since.

I even worked on submitting an abstract and summary for a poster at an academic conference, with a co-worker. I hadn’t felt that academically capable in a long time. Unfortunately, it didn’t last, and as soon as I tried to read the literature for my own scholarly interests again, my brain went back to sluggish understanding and struggling to make critical connections. I did manage to get three chapters read last week. That’s nothing really; I should be reading more at least 5 or 6 chapters or articles a day, and doing a lot of writing. But I’m trying to stay positive, and take some joy and accomplishment from what I am currently capable of doing.

And I crocheted up a couple of drink cozies as part of an ongoing project I’m working on. They’re for a fundraiser the greyhound adoption group I volunteer with has been invited to participate in, in October. I’m getting a head-start now, before classes start again. I’m making drink cozies, some clutches, and a houndstooth scarf. I’m hoping they will go over well and bring in some nice donations.

Unfortunately, over the past few days I’ve also had a worsening of, what I assume is, gallbladder symptoms. Mainly right sided pain- under my ribs, but some upper left sided pain too. And an increasing feeling of heart burn… but not really heart burn. Plus some right shoulder pain. It’s not just after I eat though. Its starting to be pretty prevalent throughout the entire day.

I’m also having more pelvic pain. That lower right side pain that never went away after surgery is still there. It isn’t nearly as bad as it was before, but it likes to pop in and remind me it’s still there.

I’m exhausted, and I don’t know what to do next. Do I try to go back and see Dr. S and have the gallbladder out? Can I even afford to do that this summer? Will I ever get an appointment with the neurologist? Will it even tell me something? Will I be able to make it through the next semester? Through my PhD program in a timely manner? What do I do if I can’t?

I don’t have the answer to any of these questions. I feel like I’m stuck in a holding-pattern when I desperately want to make some progress and move forwards. But I’m just waiting. waiting. waiting.

Update

The ultrasound with a fatty meal revealed no stones, no obstructions, no thickening of the gallbladder wall, no sludge, bile ducts within normal diameter, and an ejection factor of 75% 20 minutes after consuming the fatty meal.

So, now I have no idea what to think about my gallbladder. The HIDA was low, the ultrasound was on the high end of normal. Nothing consistently reproduces my symptoms.

It’s been a week since the ultrasound and blood work, and I still haven’t gotten the blood work report yet. Which I find strange. I got the ultrasound report on Monday. And a liver panel and lipase and amylase don’t usually take that long to run, as far as I’m aware.

I haven’t heard from Dr. S about either test. Or the referral to the neurologist, and I’ve had numbness whenever anything presses on my middle finger for about three weeks now. The involuntary leg spasms have been more frequent the past couple of weeks. And the ocular flashes are getting more frequent again. Its something I would like to get checked out before classes start in fall. I’m already behind enough on my own research and academic progress, I really don’t like being behind in classes too.

Hello Uterus. (And low FODMAP Day 8: Chicken with Green Chili Currry and Roasted Veggies)

I missed my low FODMAP entry yesterday because I felt awful. I’ll give you a warning here, if you’re just here for the low FODMAP recipes, and are uncomfortable with menstrual related talk,  then you’re going to want to skip to the bottom of this post.

Continue reading

CT scan, and low FODMAP Day 6: Chicken Biryani

This morning I had my CT scan.

I had to be at the imaging center at 10:00 AM for the 11:00 AM scan, and couldn’t have anything by mouth for at least 2 hours before. So I woke up around 7:30 to take my morning pills, but was otherwise completely fasted. I arrived at the imaging center early, after dropping A off at work. Shortly after checking in, the technician came out with two cups full of the oral contrast, and a straw. I had twenty minutes to drink it all, and then an hour later I’d be ready for my scan.

Drinking it down was a bit of a challenge. It was thick, and had an odd taste I couldn’t place. It wasn’t nearly as bad as the magnesium citrate for bowel prep, but it was certainly a challenge getting to the bottom of each up. Another patient in the waiting room was also getting an abdominal CT, and had just finished drinking his dose when I got mine. We joked a bit about the taste.

Twenty minutes or so after finishing my two cups of contrast it hit me. The last time I had a CT, the oral contrast was different- it was clear, and mixed with saline and ice, and I didn’t find it bad at all; the stuff I had today was white and completely different, and apparently does not agree with me as well.

I made a couple of bathroom runs before the technician came and got me for the scan. Once in the CT room the technician had me lay on the machine, placed and IV in my right arm, and had me put my hands above my head. We did a set of scans, then the technician added the IV contrast. If you’ve never had IV contrast, it’s a weird sensation; you get a warm, burning feeling that starts at the top of your head and travels down your body. It also makes you feel like you’re going to pee. We did another set of scans with the IV contrast, then the technician came and took the IV out. I needed one more set of scans, 7 minutes later, so I just waited for a while on the machine. After the last set of scans, I was done. The technician made me a copy of the scans (at my request), and told me how to sign up for the patient portal. I finished up around 11:50 AM.

Since I knew I wouldn’t have eaten all morning, I brought one of the peanut butter protein bars to eat in the car.

I had to go refill my amitriptyline prescription, so I swung by Kroger. While I was there I also picked up some low FODMAP friendly jelly, for my PB&J sandwiches- blackberry, with no added high fructose corn syrup. My tummy still wasn’t feeling well, at all, so as soon as my ‘script was filled I picked up my husband from work and headed home.

When I got home I I had a small amount of left over Cottage Pie, hoping it would help me feel a bit better. Slowly as the afternoon wore on, my tummy settled down. Then it started to hit me that my blood sugar was getting low, since I really hadn’t had much all day- and lost a lot of what I may have had in trips to the bathroom. I decided to have a handful of blueberries, raspberries, and a bit of maple syrup as a pick me up.

A little later I made dinner- Chicken Biryani from The FOODMAP Foodie. This recipe was delicious. We’ll definitely make this again, maybe with some stewed tomatoes.

Here’s the recipe:

Ingredients

  • boneless, skinless chicken tenderloins, cut into bite sized pieces
  • 1/2 cup basmati rice
  • 1 cup chicken stock
  • 2 zucchini, diced
  • 2 carrots, diced
  • 1 teaspoon ground turmeric
  • 1 tablespoon curry powder
  • 1, thumb sized piece of ginger, grated
  • olive oil

Instructions

  • Heat the oil in a medium sized Dutch oven,over medium heat.
  • Add the chicken, ginger, turmeric, and curry powder. Cook until the chicken is cooked through.
  • Pour in the rice, vegetables, and stock, and stir to mix.
  • Bring the pan to a simmer, then cover and cook for 20 minutes, stirring occasionally.

.I totally forgot to take an Instagram photo of this one, sorry guys! I was too hungry, and it was too good.

low FODMAP Day 5: Peanut Butter Protein Bars & Cottage Pie

I went to bed last night feeling pretty bad- abdominal cramps, some nausea, and all over feeling unwell. I don’t know what caused it, maybe the liquid smoke?

I woke up feeling a little better, but not in a great mood. I had to run to the grocery store to pick up some tamari, and had a bit of a break down in the car on the way home. I just wanted a comfort food snack, and couldn’t have any of my usual choices. The toughness of this diet hit me again really hard.

When I got home I made myself a bowl of oatmeal, with berries, maple syrup, and chia seeds. Besides half of the oatmeal spilling in the microwave, it made me feel a bit better.

Around noon I decide to have some lunch. I had picked up some snack packs of Kalamata olives when I was at the grocery store, so had a pack of olives with some feta cheese, some sweet potato tortilla chips, and an all natural peanut butter and preserves sandwich on Udi. The preserves probably weren’t the best option for low FODMAP, it was fig, but all the other options we had in the fridge had high fructose corn syrup as an ingredient. I figured a small amount of fig preserves would be safer than added high fructose corn syrup.

I started to feel better through out the afternoon, and late in the afternoon decided to have a peanut butter protein bar. I made these bars yesterday, so I would have something to get me through the days at school next week. I slightly modified the recipe from Kate Scarlatta.

Peanut Butter Protein Bar

Ingredients

  • 1/4 cup butter, at room temperature
  • 3/4 cup all natural peanut butter
  • 2 large eggs
  • 3/4 cup packed light brown sugar
  • 1 1/2 teaspoon vanilla extract
  • 1/2 cup quinoa flour
  • 1/4 cup brown rice flour
  • 1 teaspoon baking powder
  • dark chocolate chips

Instructions

  • Preheat oven to 350 F.
  • Line the bottom of an 8 inch square pan with parchment paper.
  • Beat together the butter and peanut butter until creamy.
  • Add in the eggs, brown sugar, and vanilla. Beat together.
  • Blend in the quinoa flour, brown rice flour, and baking powder.
  • Fold in the chocolate chips.
  • Spread batter into the prepared pan.
  • Bake for 25 minutes.Let cool for 1/2 hour, and then cut into squares.

The protein bars are pretty tasty.

As the afternoon wore on I started feeling pretty bad again. No stomach cramps, but a bit nauseous, dizzy, and flushed. Just all over not well.

For dinner I made Cottage Pie, using The FODMAP Foodie’s recipe as a base.

Ingredients

  • 1 lb ground beef
  • 2 large carrots, shredded
  • 1 parsnip, shredded
  • 1 tablespoon garlic-infused olive oil
  • 1 1/2 tablespoon tamari
  • glass of red wine
  • salt, to taste
  • pepper, to taste
  • 1/2 teaspoon rosemary
  • 1/2 teaspoon paprika
  • 1/2 teaspoon oregano
  • 1/8 teaspoon celery seed
  • 1 lb golden delicious potatoes
  • butter

Instructions

  • Wash the potatoes and add to a pot of salted water. Place over medium-high heat and bring to boil. Cook until fork tender, at least 45 minutes.
  •  While potatoes are cooking, heat garlic-infused olive oil in a stock pot or large frying pan over medium-high heat.
  • Add the ground beef to the stock pot, and brown.
  • Add the carrots, parsnip, wine, tamari, rosemary, paprika, oregano, celery seed, salt, and pepper. Simmer for ~15 minutes, until well cooked.
  • Drain the potatoes, then return the potatoes back to their pot- removed from heat. Add butter (I used 3 tablespoons, you should use an amount you’re comfortable with), salt, pepper, and paprika to taste. Mash until smooth.
  • Pour meat mixture into a 9in round oven-proof dish.
  • Top with mashed potatoes, spreading them evenly over the meat.
  • Add some slices of butter over the potatoes, then place in the oven. Cook for 20 minutes, until the top is golden brown.

This is a delicious Cottage Pie recipe. It doesn’t quite have the richness of a Cottage Pie cooked with tomato paste, but does a pretty great job on flavors otherwise. We’ll certainly be having it again in the future.

Bloating – Update

The gluten sensitivity test (the tissue transglutaminase antibody test) came back negative. That rules out Celiac Disease.
We also did a blood test for H. pylori, which came back negative.
So now I’m being referred back to Dr.S, the gastroenterologist. And, somehow I got super lucky and managed to get a referral for tomorrow at 9:00AM! They had a cancellation, which I couldn’t be more thankful for.

I’m sure tomorrow’s appointment will be just another run through of the symptoms, but hopefully that will lead to scheduling the ‘scoping, and getting to the root of whats going on. Dr. B2 said to make sure I show Dr. S the CT results that showed my small bowel intussusception, which I certainly will be doing.

Here’s a picture of some bloating from this afternoon, before I headed to class.

20150414_152729

My belly is quite large. It doesn’t always stay that large- it is usually worse when my bladder is full–which makes sense if the full bladder taking up more space, making the bloating more noticeable. But, I also noticed that, boy, that amitriptyline and letrazole has made me chunky. I weighed 144 lbs at my visit to Dr. B2; I weighed 123 lbs at my surgery back in August. It is strange to me, gaining weight so quickly now, as took me foreeeever to break 100 lbs growing up…I think I broke 100 lbs my senior year in high school, and weighed a consistent 115 lbs all the way through my undergrad degree. I broke 120 lbs when these health things really started to snowball into what they are now.

But thinking of the past isn’t going to get me anywhere, I’m staying focused on the present as much as I can.

My First Surgery – Prep.

As the days creep closer to the surgery, I’m trying not to think about it too much, lest I become far too anxious.

But of course, the surgery will be taking me “out of the game” for a while, so there have been a lot of things I’ve needed to prepare for.

First, comfort after surgery:

  • All summer I’ve been on the look out for loose clothing, like maxi skirts and dresses, and loose dresses I can wear with leggings. I’ve heard laparoscopic surgery will leave you bloated for quite a while, so I wanted enough loose and comfortable options to last longer than just a day or two after surgery.
  • A couple of weeks ago, when I first found out we’d be moving forward with the surgery but I still didn’t have a date, I bought a wedge pillow to use during recovery. I also bought some Arnica gel, which I have heard is very useful for resolving bruises and reducing pain while healing. Once my incisions are completely healed, I’ll have that on hand.

wedge pillow

  • I’ve also stocked up on Thermacare Heat wraps, to apply to my shoulders following the surgery. I’ve heard the gas pains that travel up to your shoulders can be awful.

thermacare heat packs

  • In the same vein, I bought some Gas-X and some Miralax to help things get moving after the surgery, and hopefully keep from having any bowel gas build up. After a bowel prep (yes, I did get the go ahead), surgery, and narcotic pain meds- which are known to cause constipation… and given my current bowel workings… I’m sure I’ll need these two products.
  • I also checked my cabinets for some peppermint tea, and peppermint candies, that I can sip or suck on after the surgery. Peppermint should not only help with the gas, but with any nausea- which I’ve heard can be a problem after surgery.

Second, arrangements that need to be done BEFORE surgery:

  • One of the most important things I needed to have completed before surgery was find someone to watch the pets. We’ll have to leave the house by 5 am to get to Dr. Y’s office for the pre-op appointment at 8 am. And who knows when we will get home- could be Friday afternoon or evening- or they could hold me for longer. My mom is coming down Saturday morning to help out, but couldn’t make it Friday- leaving one day unaccounted for. The dog has to go out, get fed, and take his pill after all. And the kitties would like their wet food- though they would be fine if they didn’t get it.Thankfully, A worked it out with one of his coworkers that we both trust, that they will come over and take care of the boys throughout the day Friday.
    OrionDr. PepperIcarus
  • Of next importance was writing up a sort of living will- except nothing official or legally binding. Just something that I’ve put together to give to my mom and A before the surgery, so that if anything goes wrong they know my wishes. Growing up my dad went into a coma after an aneurysm ruptured; there was A LOT of drama about what he would have wanted versus what various members of his family thought was best or what they wanted. I don’t want that kind of drama if anything ever happens to me, so wanted to make sure there was at least a document somewhere where I made my wishes known.
  • And wedding stuff. Since we will be getting married two weeks after the surgery, I realized there would still be a lot I would be limited in doing- and would therefore have to get done before the surgery instead. This past week we got our marriage license. Then, this past weekend we went and did the venue (campus horticulture gardens) walkthrough. And tomorrow I’ll be mailing off the photographers list. Plus our last few deliveries should all be here before Thursday. Although this isn’t all that needed to be completed for the wedding, the rest I should be able to easily manage even while resting and recovering- or A will have to do it.
  • Laundry! Last night I washed all the clothes that needed to be done, and a bunch of blankets. Although I won’t be needing all the laundry I cleaned, it is nice knowing they are all taken care of.
  • A bit of cleaning. My apartment is a mess. Between the dog, the cats, graduate student mess (papers, binders, books, and school work everywhere), wedding mess (there is little stuff everywhere and the cornhole boards are taking up a lot of space), and generally not feeling well enough to really clean… well you can get the picture. I’m not going to spend a lot of time cleaning or organizing (like I usually would before my mom comes to visit) because I frankly don’t have the energy… but I will make sure the bathroom is at least nice and clean.

Odds and Ends:

    • For a bit of confidence boosting before surgery, I bought this awesome shirt to wear to Dr. Y’s office and to the hospital.I’ll post a picture of me rocking it day of, sometime after the surgery.

Ova Achiever Uterus Shirt

  • I also bought a giant plush ovary (I named her Penelope) to take with me in the car.
  • Thursday morning I’m going to go get my hair cut and my layers touched up. A bit of pampering has to be good, right?
  • I bought a little sleep mask and some aloe socks to take to the hospital to make me feel more comfortable (and hopefully prevent any light sensitive migraine triggering with the bright florescent hospital lighting).

For my hospital “bag” (some things will stay in the car), I’ll be bringing:

  • Loose clothes for leaving the hospital
  • Comfortable, non-binding underwear
  • Toothbrush and toothpaste
  • Hairbrush
  • Deodorant
  • Gas-X
  • Peppermint tea bags and candies
  • Penelope, the ovary
  • A soft pillow for the car ride home- to go in between the seatbelt and my abdomen
  • Eye mask
  • Aloe socks
  • Normal socks
  • Phone Charger
  • Heat packs for shoulder
  • A few cloth pads of varying absorbancy (they will be using a uterine manipulator during the surgery, to keep it out of the way; this often leads to some bleeding after the surgery)
  • Chapstick
  • My inhaler
  • My usual meds, in case I do have to stay the night.

There are just a few more things I need to do, like pick up the things for bowel prep, show our lovely pet sitting coworker the routine, pack a hospital bag (in case I need to stay longer than I’m expected), and actually do the aforementioned bowel prep.

Just a few days left to go!

My First Surgery- PreOp Call(s)

I’m going to write a series on my first surgery. Hopefully it will be helpful for anyone else preparing to go in for endometriosis excision.

My surgery is scheduled for August 22. It will be taking place at my specialist’s (Dr. Y) hospital, 2.5 hours from my house. Thankfully, most of the pre-op management will be through phone calls, and then I will have a pre-op examination the same day as the surgery.

This week has been full of pre-op calls. Because I have never been to the hospital my surgery is being conducted at, I’ve received two calls to pre-register with the hospital and verify my information. I also received a call informing me that I would be getting a call for pre-op questioning on August 15th, between 8 and 10 am, and I should have a list of all my current medications available.

Sure enough, at 8:40am I received a call from a lovely nurse. After confirming my identity and what surgery I was going in for, we went through all of my medications- both daily and as needed. She told me to stop taking my multivitamin, tums (calcium supplement), and any Aleve or NSAIDS from now until after the surgery. She also said to make sure I take my omperazole the morning before the surgery with a sip of water, and to bring my inhaler with me to surgery.

Then we went through a list of questions about my medical history, including my current pain levels. She also asked if I consented to receiving blood products if I need them, and if I had any religious objections that they would need to know before surgery.

She gave me some instructions for the day before surgery, including don’t eat anything spicy that day, drink lots of water, don’t eat or drink anything after midnight-except that sip of water to take my pills, take a shower before bed with antibacterial soap, bring my insurance and ID to the hospital, don’t wear any jewelry or metal the day of surgery. She said to call and ask my surgeon about bowel prep (after I asked about it), and to call him if I start running a fever anytime before the surgery.

She also gave me a number to call the day before surgery to call and verify the time of the operation, and a number to call if we got delayed on the drive in.

Finally, she asked who was bringing me to the surgery (A is of course), said he’d have to stay at the hospital the whole time I was in surgery, and then told me where we could park and how to get to the women’s center where my surgery would be. She asked where my primary pharmacy was, and then she asked if I had any additional questions for her.

All and all I must say it was a fairly pleasant experience. She was very nice, in contrast to some of the medical professionals I’ve talked to. I usually have a lot of anxiety about talking on the phone, but I am glad I could talk to her on the phone- I was a lot more comfortable and put together than I would have been face-to-face in an office.

Now I just have to work up the nerves to call Dr. Y about the bowel prep…

IBS

Met with Dr. B again today. I called in to the set up the appointment on Wednesday when I was having obscene pain- and isn’t it just my luck that I set up an appointment and go back to mild-to-moderate for the next two days… Not like I’m going to complain about not having incredibly severe pain for a while, but it always does seem to go that way: I’m never as bad as I am on a usual day when I visit the doctor, so they never see the worst of it and I’m not sure they take me quite as seriously.

This time I brought my handy Catch My Pain chart. I didn’t have internet access at the office, so she didn’t get to see the stress or fatigue levels- but she got the gist enough that she took me a bit more seriously (and saw that I am mostly NOT unhappy depressed, but neutral in emotions, so didn’t press that one again).

I left with her thinking it’s IBS, and a script for some anticholergic pills to try for the next week. If they don’t work she’ll refer me to a gastroenterologist. The frustrating thing is, I am almost positive all of this pain is endometriosis related, but my GYN doesn’t want to handle the abdominal pain-because that isn’t her field- and my primary care physician is going to keep guessing these non-endo causes. I mean, I’m happy she is trying, but really I’d rather just do the surgery this summer and confirm it is endo, and take care of that appropriately. I’m sure all my endo-family out there knows that feeling all too well.