A Day in the Life - seahorse edition

I’ve gotten my eating and drinking routine down pretty good now. I have a really good grip on what helps me feel my best and what doesn’t. Today I’m going to share my typical meals for the day. As well as some little tips and tricks I’ve found helpful for me. 

5:30am 

Wake up and start sipping on ice cold water right away.  Ice water goes down best for me. Room temp water tends to make me nauseated

8am 

Eat breakfast. These days my breakfast is a chia seed pudding 

• 3/4-1cup RAW milk
• 2 tbsp chia seeds

Let sit overnight in the fridge

• sprinkle of cinnamon
• 3 tbsp hemp seeds
• 2 tbsp pecans
• Appx 3/4 cup fruit.  It varies depending on what I have on hand. Fresh or frozen berries, mango, apples, peaches, and bananas are a few of my favs

9am 

I start sipping on my protein/coffee concoction

• 1/2 cup coffee
• 1/2 premiere protein or Fairlife protein

I like the chocolate or salted caramel

• 1 scoop of Inner Beauty Collagen
• Sometimes I’ll enjoy homemade banana bread while drinking my coffee

After this morning routine, my day kind of flows depending on what’s going on.  I’ll give some examples of what time I eat and the foods I eat below. One of the things I learned over the last few years is the quality of my food matters. When I eat good, nutritious food, I feel my best.   And when I’m not eating, I’m focused on hydrating. Drinking water all day long. 

11am 

Snack time.  Sometimes I skip this one depending on when I’m going to eat lunch. 

1pm 

Lunch time.  Make sure I get a good about of protein with whatever I eat 

• Salad
• Sandwich

2pm 

Afternoon beverage time.  I drink Ningxia Red every single day, no matter where I am or what I’m doing. It’s packed full of amazing ingredients with tons of antioxidants, vitamins, minerals, and amino acids.  Depending on where I am, I’ll add in more nutritional supplements to my daily treat.  

4pm 

Snack time.  Sometimes I skip this one depending on timing of dinner

6pm 

Dinner time.  Since I work 3 days a week at the hospital, I’m not home for dinner on these days. So I try to bring leftovers. Sometimes it just looks like apples with peanut butter/nut butter.  When I’m home, I try to cook dinner every night off.  Good balanced dinners with good protein and veggies. 

8pm 

Bedtime snack. My go to is avocado toast.  Sprinkle some hemp seeds and hot sauce on top.  With a side of plantain chips usually.

I’ve found when I eat some sort of bread (I use homemade sourdough or GF) before bed, I have less incidence of bile reflux.  Weird, I know.  I remember talking to a ‘seahorse’ before getting my stomach removed and she told me that her trick for not having bile reflux at night is to eat a Hawaiian roll and drink a glass of milk before bed.  I don’t know why, but that has always stuck with me.  Maybe there is something to eating bread before bread to avoid the bile reflux.

Snacks:

• 2 hard boiled eggs with clementine
• 2 tillamook snack cheeses with clementine
• Almonds with gf pretzels
• Hummus and veggies/crackers
• Pistachios
• Apples with peanut butter/but butter. I love the RX nut butter packets to take on the go
• Beef sticks (Archie’s) with clementines

The protein intake is super important for me because if I don’t eat enough protein with a carb, I get reactive hypoglycemia or late dumping about 2 hours after I eat.  It’s not fun to have a super low blood sugar nor is it good for our bodies.  Having a roller coaster of blood sugars can cause a lot of damage in the long run.  

I think it’s important to remember that everybody is different and responds differently to different things, so what works for me may not work for you. 

I hope you found this helpful or informative. ♥️

Being Social with Food

 With 4th of July being tomorrow I thought this topic was fitting.  When we gather with friends and family, there is often food involved.  Early in my stomachless journey this would cause some anxiety for me.  When you are so used to socializing a certain way and that changes just because of your eating habits, there is a learning curve.  So while teaching my body how to digest food in a different way, there was another lesson to be had.

How to be social around food.  When you don't have a stomach its pretty important to chew your food ALOT.  Think, no stomach = no stomach acid to break down the food.  So my teeth and saliva are what do the majority of breaking down my food.  When you're focused on chewing your food, it can be difficult to be social, talk, and interact with people.  I've found just being open and vulnerable has been the best way.  Letting people know I'm not talking a lot for this reason.  Or if I'm talking with food in my mouth, this is why.  Simply giving a hand gesture to wait for my response.  

I used to wonder what people thought of all this.  But life's way too short to worry about that.  I'm doing what I need to do to take care of my body the best way I know how.  And it's doesn't really matter what people think of it.

Just like when I have a plate half empty because I know I'm not going to be able to eat a ton.  People who don't know me say things like "is that all you're going to eat?"  I used to find myself getting defensive to this.  But I know it comes from a genuine place of curiosity.  People see how thin I am and how much food I put on my plate.  It's all good.  Then they see me go back for more in a couple of hours and wonder to themselves "I'm still stuffed and she's eating again?"  Kind of goes back to the idea that we shouldn't judge others.  We often don't know what they are going through.  There's no sense in creating shame, when we can be building each other up.  

It does get a bit annoying needing to think about food ALL the time.  But I embrace it most of the time.  I know I feel best when I eat often and fuel my body with good food.  And I want to feel good.  So if that's what I gotta do, that's what I'll do.  When we take care of ourselves, our bodies take care of us.  This month, I'm really focusing on self care.  What does that actually mean?  How do we accomplish it?  You can find me on Instagram @the_eo_seahorse to follow along.  

So for those of you who are feeling a bit anxious about socializing for the 4th of July for one reason or another.  You got this.  The more I've done it, the better it's gotten.  And I believe it will for you too.  Sometimes when we are the most uncomfortable are the times we are going to learn the most from.  Lean into that discomfort.  You might be surprise what you learn from yourself. 

Chronic Health Condition

This may sound crazy considering I chose to remove my stomach over 3 years ago.  But over the last several months I am accepting the idea/fact that I have a chronic health condition.  Let me explain bit.

Early March, I flew back to Maryland for my 3 year post-gastrectomy follow up appointment.  Leading up to this I was feeling great.  Good energy.  Maintaining weight.  Hair growing back.  So many good things. At these appointments they draw labs for so many different nutritional things.  One of them being iron levels.  For those of us without a stomach iron is not as easily absorbed.  Our intestines are routed differently.  When they remove the stomach they also do something called a Roux-en-y.  It's very common in bariatric surgeries as well.  Here's a graphic showing the difference in anatomy of somebody with a stomach vs somebody without.  Anyway, when they do the roux-en-y, the duodenum (the first part of your intestine) is routed a different way to stay connected to your common bile duct among other things.  To allow your liver, gallbladder, and pancreas to still do their job.

Image from https://www.nexussurgical.sg/upper-gastrointestinal-surgery/stomach-cancer/

Well, the duodenum is responsible for a lot of our iron absorption.  Now that my duodenum is re-routed, my food and supplements do no pass through it.  Making it a little challenging to absorb iron.  So the first 3 years without a stomach, I knew it was important to be diligent with taking my iron supplements.  But I didn't fully understand why.  At least I don't remember paying much attention to it early on.  So, they checked my iron levels in March and they were the lowest they have ever been.  They gave me an iron infusion.  It was a bit of a whirlwind as I planned my trip to be less than 24 hours because I didn't want to spend any more time there than I needed to.

Let me digress for a minute.  Early on this adventure, when I first learned about my genetic mutation, I was all about making a 'vacation' out of going to Maryland and the NIH.  Why not make the most of it?  Right?  Last year, I went by myself.  Which is totally fine.  I'd gone solo before and actually kind of the enjoyed the alone time.  But it was different last year.  COVID has really changed the atmosphere.  I didn't feel safe riding the Metro alone in the evening going from the airport to my hotel.  It's hard to explain on paper, but I didn't like it.  So this year, I opted into an overnight flight so I wouldn't need to navigate the city after dark.  

Okay, so adding on an iron infusion to my already jam packed day was craziness.  Rushed to the airport, with some time to spare thank goodness.  However, I did leave my AirPods at the hospital.  DOH! Thankfully the staff is amazing and sent it Fedex that day and they arrived on my doorstep the next day. Which is insane to me.  The bummer part was I didn't have them for the 5 hour flight home.  Thank goodness I had a good book to read.  Phew!

Okay, so after needing the iron infusion it really started sinking in that I am going to be living with chronically low iron the rest of my life.  That has not been an easy pill for me to swallow.  Accepting the fact that I have a chronic health condition has not been easy.  This whole time I've been trying to be 'normal'  Trying to prove to myself and others that living without a stomach is no big deal.  People do it.  Seahorses do it.  ;)

Maybe that had been my way of coping.  Coping with the fact that I had the possibility of getting the deadly cancer my dad had.  Maybe it was the only way I could cope while making the decision to take my health into my own hands by eliminating that possibility.  Telling myself, it's no big deal.  Lots of people have done it so why can't I?  In the moment, I felt I was doing my due diligence to ask all the questions, research all the things, interview many surgeons, watch other people who had gone though the same thing.  Trying to eliminate all possibilities of future complications and such.  I mean I had list of questions for the surgeons that was a mile long.  I had it printed out on several pieces of paper.  One for each surgeon I would interview.  To make sure I was asking them all the same questions and taking notes so I could compare the pros and cons to each one.  I was very active in the CDH1 facebook group leaning as much as I possibility to be the most prepared I could be going into this new chapter.  

Sometimes, you do all of those things to prepare yourself.  But none of those things actually prepare you in all the ways.  There's always something you can't foresee.  We are constantly growing, evolving and learning new things. It's kind of like becoming a parent.  You can read all the books, take all the classes, but when that baby comes is when you really start to learn.  

So I've learned through this whole process, just do the best you know how to do today.  Try not to stress about the future.  We can plan for the future, sure.  But it's not worth our fight or flight response to get all worked up about and stress about what might happen in the future.  My dad actually always told me I worried too much.  Growing up, he would ask me "what are you thinking about?  What are you worried about?"  I always thought he was crazy.  "He doesn't know me at all".  Haha.  Looking back, he knew me better than I realized and better than I knew myself.  So now, at almost 38 years old, I'm learning how to protect that fight or flight response.  I now know how stress can so negatively impact our bodies.  And I'm not about that.  Especially chronic stress.  Even at low levels.  Anyway.

I am so unbelievably grateful to have had the opportunity to make the decision to remove my stomach.  Now I can say, I will never get the deadly cancer that killed my dad far too young.  I just wish he had had the same opportunity.  I miss him greatly.  

Do you have a chronic health condition your'e struggling with?  I'd love to chat/connect with you.  Sometimes it helps just to talk with someone who can relate a little.  You can leave a comment here, or find me on instagram @the_eo_seahorse.

Be well and take care.

Recovering

It’s been 3 weeks now since my last surgery.  It’s amazing what 3 weeks can do. 3 weeks of taking care of myself — eating, hydrating, walking, napping in the hammock, reading, gardening, much alone time, time in nature, enjoying our amazing weather, and the list goes on. It can be challenging to ‘rest’ since we are so used to the hustle and bustle that is life. But yet again I find myself learning to enjoy this quiet time and accept it. And not just accept it really.  Too embrace it.  Really lean into it.  Which is really kind of freeing and liberating.  Some days I focus a little more on the to do list while other days I just do what my heart so desires.  

When I wrote that first sentence ‘it’s been 3 weeks now since my last surgery’ I can’t help but focus on the word ‘last’.  This was the best word I could came up with to accurately and efficiently describe which surgery I was talking about. Which blows my mind. My entire life, I’ve been a pretty healthy person. Every time I would go to a new doctor it would take just a minute to tell them my very small medical history. I was so proud of never having surgery and not taking any medications.  Now when I go to a new doctor I feel I should take a sheet of paper with everything on it to make sure I don’t forget something.  I’ve now had 5 surgeries in the last 4 years.  And while I still don’t really take any medications, I need to take several supplements.  Crazy how life takes you on journeys you never would have thought you’d be on. 

Last week I had a breast biopsy.  To back track a bit, before I left for Maryland, I got a call telling me my recent mammogram showed some questionable spots so they wanted me to follow up with an ultrasound.  Once I got the ultrasound the radiologist came to talk with me.  The spots looked like cysts but because of my 42% lifetime risk of developing breast cancer, she wanted to biopsy it.  Of course I cried at first because I cry about everything.  But it didn’t take me long to agree with that advice. Better safe than sorry, right?  This is what surveillance is about. Better to catch things early rather than late.  The biopsy was super smooth.  The medical professionals were amazing. You can tell they truly care.  The radiologist called me the following day to let me know it was benign.  Literally as soon as I hung up with the radiologist, my gynecologist called me.  Yes, the one who convinced me to get genetic testing in the first place. She wanted to let me know the biopsy was benign.  Thank goodness!!  I really wasn’t concerned about it based on what they told me from the ultrasound, but it weighs on your mind a bit, ya know. 

The reason I even bring this up is because I do have the option to have a prophylactic double mastectomy.  I’ve never been opposed to it. I’ve always known my breast cancer risk is higher than the general public and that I could do reconstruction if that was the route I chose to go. But in the last year or so I’m realizing I don’t really want reconstruction, which is really difficult. I have no interest in having any foreign bodies in my body if I can help it.  And some of the options I’m not even sure are viable options for me since being so thin from the gastrectomy. So, I need to get in to see a high risk breast specialist. Just to talk everything out. Might as well have a relationship with them now just in case I need them.  So I’m thinking that’s the next step in this crazy CDH1 journey.  And right now, I just can’t even imagine having yet another surgery. Especially since breast cancer is so much better screened for than diffuse gastric cancer.  So for now, I’m choosing surveillance every 6 months and we’ll see where that takes me. 

Back to recovering. Sorry, I’m a bit all over the place. Had a virtual follow up wait my surgeon today.  That went well. He confirmed I need to take the full 8 weeks off to fully heal. My risk for incisional hernia is pretty high because they’ve now opened my belly up 3 times in the same incision.  So we discussed some exercises that are safe since I’m going a bit stir crazy here. Going to try a decent inclined short hike tomorrow and see how it goes.  It’s going to be great!

Hallelujah

Yes!  We finally get to go home!  What a week it has been. Saw the team this morning and the one lab they were keeping a close eye on is drastically better than just a couple days ago. They pulled the abdominal drain!  I’ve never had one before and wow what a weird feeling that was.  It was like my body was so relieved to have it pulled out. Like a little pressure at first. And then some more pressure. And then almost a popping feeling. The only thing I can think of to compare it to is to having a baby. All the pressure the baby is putting on all of your lady parts. And then the ring of fire right before babies head pops out. And then that feeling of release when the head makes it out. Hallelujah!  Haha. Obviously today was not near as intense, as special, or as painful as having a baby, but there you have it. Haha.  

So we’re just hanging out before we head to the airport. Taking it all in. Reflecting a bit.  

Thank you for all the kind words, words of encouragement, and all your thoughts, prayers, and positive vibes!  Our tribes are so important when we’re going through rough times and I’m so lucky to have such an amazing one.

Also, I know things could be so much worse and I am so grateful I am where I am.  And even that I’ve gone through what is a lot. It’s only going to make me stronger and live life to the fullest.  

“The best view comes after the hardest climb”

- Author unknown

Don’t know I’ve made my hardest climb in life, but I’ve definitely seen some amazing views.  ♥️ 

No Stomach No Problem? Really??

I really should have updated this on Monday. I’m so sorry I didn’t. 

After the MRCP I immediately met with my Dr. He could see what looked like to be a stone in the common bile duct. The only real option for somebody without a stomach is to have another surgery to get it out.  He reached out to some of his GI friends who do ERCPs everyday and they said ‘there is no way, that is extremely technical because of the anatomy’.  We talked for a while with him and felt a bit of a relief.  We know what’s going on. We know how to fix it. So I got on the OR schedule for Tuesday morning.  And Dr Davis said I could stay the night in the hotel as long as I was back at 7am. Which made me extremely happy. Matt and I walked back to the hotel - it’s about one and half miles. The weather was beautiful.  We got to see all sorts of flowers blooming and like I said I felt like a weight had lifted off my shoulders.  Got to the hotel, ate some dinner, took a nice shower, and went to bed. Sleep very well. Woke up before my alarm, which never happens by the way 🤣.  And was ready to go. Packed up all my stuff prepared for another night stay in the hospital. 

We got through preop farely quickly and off to the OR I went.  This procedure was anticipated to only take about 30 mins.

As I was slowly waking up in PACU I start comprehending what people are saying a little more.  I hear somebody tell me I have a foley catheter.  Then somebody mentions a drain.  As most of you know, waking up from anesthesia can be a bit of a blur. I don’t know how or when I learned the surgery took 3 1/2 hours.  Or that I will go home with the JP.  The stone was nowhere to be found....again.  So my surgeon decided to do something to prevent a stone from getting stuck in the bile duct again. So we wouldn’t be doing this again in the near future.  Thank goodness!  I’m so grateful he made some decisions while in there to be proactive and not just decide to close me up.  

But what I do remember is a feeling of overwhelming despair.  Not that surgery didn’t go as planned. Not that I would need to go home with a drain.  Not about anything from today. An overwhelming despair that this is my life. And feeling like my life will forever be a medical mystery and there’s nothing I can do about it.  I described it to Matt, my mom and my Dr that it felt like I was in a downward spiral of a tunnel that just kept getting faster and faster and there was no way out. And the rest of my life was going to be this way.  In and out of the hosptial.  Always needing surgeries.  Not feeling how I want to feel - healthy!  I feel like normally I’m a pretty optimistic person and always looking for the good and positive in things. But last night I didn’t give a SHIT.  I know I said many things that scared and worried many people.  I told my Dr that I not mad at him or how surgery went. And I’m not. Everything he did while in there was thorough and understandable.  The stone was nowhere to be found....again.  So my surgeon decided to do something to prevent a stone from getting stuck in the bile duct again. So we wouldn’t be doing this again in the near future.  It all makes sense to me.  I told him I am mad at the world.  I told him he should be glad he wasn’t present 2 hours earlier when I was really steamed up. Matt, in his very rational mind, kept reminding me I just to sleep.  Dr Davis asked me if I wanted some Ativan to take the edge off emotionally overnight. I told him I didn’t. I said I need to work through all these emotions now while I’m having them since I can now (being here and not having much to do - well, other than heal up and all that’s involved with that). Better to deal with it all here than when I get back home and I’m with my wonderful kiddos.  He asked ‘are you sure? with an eyebrow raise.  I know he was worried about me too. When he left the room I took Matts advice and I slept.  I have no idea how long, but I know he sat in my room with me the entire time.  I have to add, in my fit of rage and despair, he really stepped up.  In ways I’ve never seen him have to do before.  In the moment I told him he was bossy, but I know he was doing and saying all the right things to help me.  

So after a good rest, I woke up more rational and feeling like everything is going to be okay.  I cried. I mean I’ve cried a lot. And that is okay. I was determined to let myself feel all the feels no matter what they were.  I’m still crying a bit this evening.  The sadness is not going to disappear in an instant. But I have really improved today. I got a REALLY good nights rest thanks to an amazing nurse. You can still be a thorough night nurse with good patient care and allow your patients to rest.  I woke up this morning still feeling pretty down and unmotivated. They forced me out of bed at 7am.  Sat in a chair for a few hours before doing much else. Several people, but mostly my mom and husband really pushed me. They told me ‘you know what you need to do to get out of there’. At the moment I didn’t even care. I didn’t care to get out of here. I would find myself just staring into space at times.  There was also a provider (one who actually kind of knows me by now) who came in to check on my pain and realized I wasn’t okay. He sat down with me. He took the extra 3 minutes to have a chat and be real. And he had many good suggestions. Acupuncture.  Massage therapy.  Guided imagery.  He asked if I was interested and I said absolutely but that I know their schedules are hard to work around. He said ‘it doesn’t matter.  I’m going there right now to light a fire’. And he did. Within 30 mins more people showed up at my door. Including a kind of counselor person. She sat and talked for about an hour with me.  It has been so validating to feel heard. Not one person tried to brush off how I was feeling. Not one. Every single person I’ve encountered today has let me feel my feeling. Has let me cry.  And because of that has given me hope.  I was never worried about healing physically.  I was extremely worried and still am a little about healing mentally and emotionally.  

But it’s nearing the end of the day here and I feel accomplished. I’m so many ways.  I went from not caring about much this morning. I mean, I had a foley and didn’t care. Yuck. To now being ready to say goodbye to the PCA and hello to oral pain meds. So hopefully tomorrow I can be discharged and stay the night in the hotel again with Matt.  I gotten lots of walking in today. My appetite is coming back to I’ve eaten a good amount. I’m still working on hydrating, but we can’t do everything at once, right. Glad I have IV fluids still. Haha. 

So just to wrap this up. Anybody going through a rough time. It’s okay. Let yourself feel all the feels. And if that becomes to much don’t be afraid to reach out to somebody. Anybody.  I know the best medicine for me right now is walking, talking to my family, laughing, and being able to at least see the outdoors.  But sometimes we need actual drugs to help us. And that’s okay too. Everybody is on their own journey. And we are all doing the very best we can. Let’s give ourselves grace and kindness...everyday.  ♥️

Big Updates

Well, the last week has been a bit of a whirlwind.  Sunday, March 21, my pain came back within 30 minutes of eating my avocado toast as my bedtime snack.  My husband was able to massage my back and bit as I laid on my heating pad and it subsided for the most part. Thought I was in the clear. Monday morning I woke up feeling pretty normal. My mid to upper back was a bit sore but I didn’t really think anything of it. As I was driving to work I did my usual (since I have a decent commute) by drinking some water and then eating breakfast. Within 20 minutes the pain returned. I got to work, then immediately turned around to try to get back home as soon as I could. I almost made it, but had to stop along the way to wait for a ‘bad’ point of pain. So eventually I made it home and rested on the heating pad. Had pain on and off all day. Didn’t really eat much because I was afraid to. Just tried to stay hydrated.  

Same thing was happening on Tuesday so I called my surgical team to hear their thoughts. Oh, I should add that on Monday I realized the pain was more localized on my right upper abdomen instead of my left (which is where the pain usually is). And Monday night I realized I had some leftover pain medication I could try. So I did and it helped tremendously. I was able to sleep and woke up feeling rested.  Okay, so talked to the surgical team on Tuesday. They said since the pain meds were helping to wait and see how I was feeling on Wednesday.  So I did. It wasn’t getting better. I couldn’t take it anymore. 

So I went to the ED. Very good, quick experience.  Upon ultrasound of my right upper abdomen, they found 2 gallstones in my common bile duct. Ugh. In a person that has their stomach they would just do an ERCP. Which is basically a scope through your mouth, they find your gallbladder and common bile duct and fish those stones out of there. Since I don’t have a stomach my anatomy is way different and makes this procedure much more complicated.  So I immediately talked to my surgeon at the NIH.  Upon very little thought and discussion we decided it was probably best for me just to fly out early and get this figured out. I was supposed to fly out Sunday, March 28 for my 2 year check up anyway. So Matt (my husband) and I just hustled and got everything ready to fly out Thursday morning.  Got to the NIH around 7pm where they admitted me and did al the things they needed to do for me to be ready for an MRCP on Friday morning.

Immediately after the MRCP, the MRI tech informed me they needed me in preop right away.  Since my husband wasn’t allowed in the hosptial with me, I was trying to coordinate with him and how to get in for the procedure and find out where he was. I guess he had been looking fore when I was in the MRCP and getting a bit anxious...understandably. I think at one point he thought I had gone to the OR already. So anyway, him and I met up in preop. Phew. Surgeon explained everything they were going to do in the OR and off and went. 

Well, the procedure did not exactly go as planned. Those stones were being very stubborn so he had to reopen part of my old incision for the Lego a gastrectomy surgery.  He tried for 2 hours before deciding to do so. Seriously, he’s the best. What other surgeon would have done that?  In the end I think he was very disappointed in how everything went. He thought he got the stones out but didn’t actually visualize the stones leaving the bile duct. Did his best to confirm and closed me up. 

I’m in the hospital post op and they are keeping very close eyes on my liver function. Some levels started to go up immediately after surgery. Then started to go down on Saturday. So we all felt a bit better about that, but decided it would be best to stay one more night. Sunday, I got discharged from the hosptial and stated the night in the hotel with Matt. We hadn’t physically seen each other for almost 48 hours. Weird for us. Haha. It was nice to take a shower in the nice hotel shower, wash my hair, be in a comfortable bed.  All the things.  I woke up this morning (Monday) feeling ready to take on the challenge of getting back to my hydration and eating routines.  I needed to go back to the hosptial to get a DEXA scan (part of the yearly checkup) and get my liver labs checked one last time. So did those things, then just sat outside for over an hour enjoying the beautiful morning while I ate a little breakfast. Matt was doing work stuff (when he’s not there he still needs to run things from afar which is not easy for him - it can be very stressful at times). There we were just soaking in the morning.  Then I get a call from the surgical fellow that my bilirubin levels spiked up higher than they been at all. My heart dropped. Does this mean they didn’t get the stone that was really stuck in there?  Does this mean I need to have another surgery?  What does this mean?  She told me to come back and we’ll have a chat but that they were scheduling me for another MRCP to try to figure out what’s going on. 

So we all (me, hubby, surgeon, and surgical fellow) all had a chat about all the possibilities and all the different plans depending on what the MRCP shows. So here I am waiting for the MRCP. But this definitely means we won’t be going home today.  The kiddos don’t know yet and are going to be sooo disappointed and sad. I’m just going to have to explain to them this it’s for the best and we need to make sure mommy is all good to go before she goes home. That way I won’t have to get home and turn right back around to come out here.  I hope I have the right words to help ease their concerns, anxieties, frustrations, and sadness when I talk to them a little later today. 

So there’s an update with what’s going on. Writing this out actually helps me ton, both mentally and emotionally.  Just taking the time to reflect on my experiences and appreciating the little things that make a big difference.  Like that I didn’t get all the way back to the hotel and have to turn around right away to come back. Or that I have my amazing husband here with me who is now allowed to be inside with me today. Or that I have such amazing support system at home.  Or that I have no stress about what I’m going to do about the kiddos. Or the house. Or the dogs. Or work.  I can focus on what’s going on right now with me and take care of that.  And that I was able to enjoy the cherry blossoms for a short time while waiting for the metro after landing in DC.  And all the spring flowers that are popping up around Maryland this time of year. 

Anyway, thank you all for staying tuned.  

Happy New Year!

 Happy New Year!!  I hope everybody had great family time for the holidays even though family time might have looked a little different this time.  In the midst of the holiday craziness, I was pursuing additional tests and such to try to figure out the abdominal pain issue once and for all. For a while it was getting better. The osteopathic manipulation seemed to be helping. Until about a month ago it happened again.  At work.  Debilitating.  My hubby picked me up and drove me home.  The pain subside mid day. I slept for several hours. Tried to hydrate as much as possible upon waking up. Are a light dinner and it started again. Ugh.

So the next day I called the GI doctor I saw in the hospital back in May.  Got a virtual appointment that afternoon with the NP.  After describing my symptoms and pain location she ordered an ultrasound and blood work.  Blood work looks pretty good.  But they did see gallstones on the ultrasound.  So she wants to schedule me for an EGD and HIDA scan.  I don’t feel super comfortable having them do an EGD since they don’t really know my anatomy, so I reached out to my surgeon at the NIH.  He’d like me to go out to Maryland as soon as COVID calms down a bit again so they can do these tests and try to figure out the source of my severe intermittent pain.  So that’s the plan. Hopefully I’ll be out there in a couple months.  And hopefully I don’t experience the pain again until we can figure this out.  

On a side note, life has been a bit crazy with the holidays, a wedding in the family, and my sons 6th birthday coming up.  I keep telling myself things will settle down after his birthday. But will it really?  We have projects we want to get done outside while weather is nice.  It seems there is always something. Do you ever feel that way?  Don’t get me wrong, we enjoy the little things in life through the craziness, but it would be real nice to just be and not feel like we need to be doing something all the time.  Is it just me?  

NIH 1 year follow up

 Three months ago I sat down and wrote a blog post. But I never actually posted it.  In the moment I felt a bit crazy.  I got self conscious and started worrying about what people would think of me.  But today, I’m not concerned about it.  I am transparent and honest and I am proud that I’ve found ways to help my body when nobody can really figure out the answers.  So I’ve back posted 2 blogs.  And here goes a current one.

I am currently in an airplane on my way home from Maryland. My 1 year post op follow up was long over due.  It’s actually been 18 months. That’s so hard to believe.  It’s been a rollercoaster to say the least. I’m taking every precaution I can to stay safe during COVID. I have a mask with a filter that is better than N95s, I wipe down all surfaces I’m going to touch. And I have hand sanitizer easily accessible of course. Anyway, I felt the need to mention all of the above because to be completely honest with you I was a bit worried going into the travel. Luckily, the flight to Maryland was half empty and I only had 2 people even remotely close to me. But now I sit in a package of sardines for the flight home.  I haven’t heard anybody cough or sneeze. And of course we all have our masks on. 

Okay, back to the NIH visit. It was short and sweet with lab work, DEXA scan, and chat with Dr Davis and my dietician.  Lab work looks good. Iron levels are still slowly increasing. So they want me to keep up with my iron regimen. DEXA scan shows a slight decrease in density compared to my scan last year, but still well within normal range. I feel so good about that. I was a bit paranoid as I was an idiot right after my gastrectomy.  I knew I needed to take Calcium Citrate multiple times a day.  But I found the huge pills difficult to take and to remember 4 times a day was also difficult. So I found some chewable ones. Well, three months later when I go to reorder them I realize I ordered a different type of calcium!  Doh!!  I felt so stupid. Anyway, so bone density scan all good. 

I spoke with Dr Davis about my gallbladder vs other cause of the pain I’ve been having.  We both agree that we don’t think it’s a gallbladder thing. I explained some of the osteopathic manipulation I’ve been doing and he seems a bit intrigued. He said he has about a handful of patients that are having very similar experiences.  He asked that I keep him in the loop about it all because he would love to start reading up on it and be able to start recommending something similar to other patients if they have it available.

I won’t bore you with all the details but I did have the pain again about a week ago while my hubby and I were on an epic road trip for our 10 year anniversary.  Thankfully it only lasted less than an hour or so. As soon as it started I laid flat on my belly on a heating pad. And eventually was able to get comfortable enough to fall asleep. 🤷🏻‍♀️

Just rolling with the process.  And hopefully I don’t actually go crazy while doing so. Haha. 

 

Feel Hungover

 Osteopathic doctor warned me to drink lots of water and get lots of rest after that first manipulation appointment. Well, yesterday I worked and felt great the whole day. Today I woke up and feel like I have the worst hangover I’ve ever had.  The headache. The nausea.  Just feel like I’ve been run over by a semi truck. So in my mind right now I’m thinking between the osteopathic manipulation and the accupressure, something is changing in my body.  

Stay tuned...

Osteopath

 A couple weeks have gone by since my visit to the hospital.  I’ve traveled through quite the mix of emotions during that time.  The most prominent immediately after leaving the hospital was frustration.  Frustration that nobody knows what to make of my situation.  Frustration toward myself that I should communicate better.  Frustration that my family feels helpless.  And so many other things.  Even though I had these intense feelings of frustration I kept telling myself to think positive.  I know that medicine is a science and it is not black and white.  I know that my knew body can be a challenge at times.  I’ve always believed things happen for a reason - even shitty stuff happens for a reason.  We might not always know that reason in the moment and that can be frustrating.

 I have a strong tendency to worry.  When this pain happens, I worry about what is causing it.  I worry if I will need another surgery.  I worry about how much the medical bills are going to be.  I worry that it is going to happen again.  I worry about how these situations are going to affect my kids and the way they see the world or how they cope.  My mind just goes crazy with worry.  And I completely understand that worrying is not going to accomplish anything.  And I completely believe it causes more grief than is necessary.  I also believe the mind is a very powerful thing and such worrying can cause more physical ailments.  Because of this, I am constantly reminding myself not to worry.  I’m not a religious person but like I said I believe things happen for a reason and I believe in a higher power.  There is no need to worry.  

At this moment, we don’t know what is causing the pain, and that is okay.  Maybe we aren’t supposed to know right now.  What does it really matter if I need another surgery.  Is that really the worst thing that can happen?  I take care of kiddos everyday who have had countless amount of surgeries.  Poor kiddos.  And they have the best attitudes.  The cost of medical bills can be super frustrating, but what does worrying about it do.  Nothing.  And we are so fortunate to have good steady jobs.  And the ability to save and be prepared for these situations.  And what if it happens again?  Well, we will deal with it just like we have before.  And maybe that time will be the time somebody figures something out.  And for my kids.  They are resilient.  They are smart.  They will see my strength, courage, positivity, and grace though these situations.  It is so extremely freeing to let go of the things you cannot control.  No matter what happens, life will go on and we will get through it and will be stronger for it.

With all of that said I still find it important to be an advocate for myself and to research and talk with people in similar situations.  I’ve done some connecting with other people who have my genetic mutation and have had their stomach removed who also have had this weird abdominal pain.  Since doing so, I’ve remembered that my surgeon told me it is very common to have gallbladder issues after the removal of your stomach, but more so if you’re really over weight to begin with. If that’s the case you usually lose a larger amount of weight is a very short amount of time. Which can cause issues with your gallbladder. So he usually just takes the gallbladder out with the stomach in those patients.  At the time I was not a candidate for that. At least not on his recommendation.  And I agreed with him. I’d like to keep as many of my organs for a long as I possibly can.  But now I’m wondering if this is my issue. My most recent CT scan looks okay, but I’m wondering if I should pursue more imaging to rule my gallbladder out.  So while in the hospital a couple of weeks, I spoke to the hospitalist about possibly working up my gallbladder. He didn’t think it was a bad idea.  It would be good to rule out so we know for sure it’s not that. Cause that’s what we do in medicine. We make a list of all the things it could be so we can go through that list and cross the items off one by one. So he recommended I follow up with my PCP for pursuing the gallbladder as a cause to my pain.  Anyway, the hospitalist is actually a DO and practices osteopathic medicine as well.  I actually had an appointment with him today.   He spent over an hour with me.  He explained osteopathic medicine with info than I could ever absorb about our lymphatic system and the entire time doing osteopathic manipulative medicine with me today.  I’m still not entirely sure what exactly that means, but he had a lot of insight and spent a very long time with me working on fascia release in my abdomen, and lymphatic drainage.  I will definitely be going back.

My chiropractor also came to came for another acupressure session.  I know I’ve mentioned him before but can’t remember how in depth I went about acupressure and what he does.  Acupressure is very much like accupuncture, but there are no needles involved.  It is all based on the knowledge that we as humans are made up of energy. Just like everything else.  And sometimes things in our bodies or things that happen to our bodies cause a block in the flow of that energy.  The accupressure or accupuncture helps to relieve that blockage so the energy can flow more freely again. When we have blocked energy within our bodies it can cause symptoms like pain or nausea.  Way back shortly after having my stomach removed I was super nauseated. A lot of the time. I had more days of nausea than I had with no nausea.  Dr Berg came to see if there was anything he could do to help me. And I know this all sounds super hoaxie and totally hippie but I was so surprised at the sensations I was feeling as he was doing his work to release the blocked energy in and around my abdomen.  I remember after that first session feeling a world of difference for the better. I had a bit more energy.  I had a appetite and the nausea was markedly improved. I would go into more detail about the sensations I was feeling but I think you all would really think I’ve gone bat shit crazy. So let’s just leave it at that for now.  He did a lot of educating me on what he does and how the energy flows in our bodies and what helps with energy flow and what can cause blockages of that energy.  And in the several sessions we’ve had since that first day we’ve chatted more and more about it all including grounding our bodies to earth and earthing and all sorts of non western thinking.  Over time I’ve come to believe that this man is a true healer. He has a gift within his hands and I feel so fortunate to have crossed paths with him.  

But let’s back track for a minute to last week.  My chiropractor came, which was about a week after I was in the hospital.  I just felt he could help me. So he came and went and I felt a tad better in general. As the next week went by I just felt like there was a spot in my abdomen that just felt congested and stuck. Not really sure how else to describe it.  I made an appointment for today to see if we could relieve that feeling I’ve been having.  As he did his thing and felt around my belly he located several spots that caused discomfort on palpation.  Long story short he was able to help those spots.  To the point where the feeling of hollowness where my stomach used to be has changed.  The best way I can find to describe the feeling is full. It no longer feels there is a void there. 

So between the acupressure and the osteopathic manipulations, I think we might be onto something.

Stay tuned...

Abdominal Pain AGAIN 🤦🏽‍♀️

Hello.  The last couple of months have been filled with spending lots of time at home. School from home. Kids spending lots of time with Grandma while my husband and I work.  It actually has been a nice time to slow down a bit. As much as I miss people and social interaction.  Yet at the same time I have felt just as busy as ever. Trying to do school at home for our daughter has been an interesting change. It’s been forcing me to do school work with our pre-kinder kiddo. So that’s an upside.  It has definitely been a challenge adding teacher to my already diverse resume.  No longer just a nurse, mom, wife, housekeeper, and chef.  Now I can say I have experience as a teacher, PE coach, principal, and referee.  Haha. 

With all that said it’s even more interesting while experiencing all this COVID stuff as an inpatient in the hosptial.  Today is Friday. On Wednesday afternoon I started having abdominal pain. Left work early and drove myself to the emergency room. I was really hoping it would pass so I sat in my car for about an hour and half to try to wait it out.  Which was not working.  So after 3 hours of intense pain I went in.  I found it interesting they weren’t screening for or testing people for COVID upon entering. Nor were they offering people masks. 

Anyway, sat in the lobby a couple of hours before being taken back. That was fun. Being in intense pain and vomiting in front of everybody in the lobby was a new experience for me.  

Met the ED Dr who I had seen last year once for this same type of abdominal pain. So it was nice to see a familiar face of someone who I remembered liking in the past. Got worked up with labs, urine, IV, pain meds and a CT scan.  Thank goodness for pain medication!!  So they found a UTI but that doesn’t really explain this intense abdominal pain.  So they decided to admit me under observation since I didn’t feel comfortable leaving.  The pain medicine was working but once it wore off the pain would come right back. This is by far the longest this type of pain has ever lasted. Something has to be wrong. The CT didn’t show anything.  Which I wasn’t surprised about. I mean it’s good it didn’t show anything but it would also be nice to have a definitive reason for this pain.  So they admitted me.  I had a consult with a general surgeon. There’s nothing they see wrong that requires surgical intervention. And the gastroenterologist said the same thing...nothing they feel they need to do right now. Especially since the pain was gone by the time I saw them. The good news is that now I’ve been established with both of these specialists so I can call them if I need to.  

I just got discharged a couple of hours ago and it felt amazing to get home and take a hot shower.  Kids are at Grandma’a house swimming so I have a little quiet time to myself to gather and compose my thoughts and feelings.  It’s these moments when I have this extreme pain I completely regret having my stomach removed. I start thinking all the reasons I shouldn’t have done it. It doesn’t take me long to snap out of it as I know deep down I did the right thing by removing it.  But I think it’s worth mentioning for any of you who might struggle with similar circumstances.  

So now I’m home feeling ready to conquer the world. Haha. I feel really good right now. But I am forcing myself to rest and eat. I only ate a very small dinner in 24 hours. And then so far today I’ve only eaten 2 very small meals.  It’s amazing how fast weight can drop off me these days if I miss a few meals. So wish me luck I’m that department. 

Endorphins

I love the rain. The way the desert smells when it rains is one of the best smells.  And it’s not often it rains for multiple days in a row here I. Phoenix so I’m fully enjoying it. Windows were open all day letting in all the fresh air.  The only bummer part about all the rain we’ve had this week is that I haven’t been able to hike. Usually my little 5 year old and I go out for a short hike a couple times a week. He loves it just as much as I do. And I’m super impressed with the difficulty levels he’s been able to keep up with.  This week, however, has not been a hiking kind of week.  So yesterday I decided to try a group Tabata class at our community center for the first time since surgery. I was super nervous about it as I know how challenging these classes can be for anybody. Let alone myself who hasn’t done any hardcore exercise in over a year.  I felt very motivated because I’m feeling so good and really want to gain some muscle mass back.  I had a water bottle full of slightly diluted Gatorade to try to prevent any hypoglycemia. And I ate a nice protein and carb filled meal right before hand.  And I did great!  I felt so good the entire time. And after felt amazing. My muscles felt pretty weak for half the day following. Nothing surprising there.  It felt like a weight had been lifted off my shoulders to know my body can handle this kind of stuff again.  So I’m super stoked to started really exercising regularly again. So stoked I decided to go back for a cardio class today. A little different than the Tabata obviously.  The Tabata class focuses more on strength training and building muscle.  But the cardio class kicked my butt a bit more.  Which also felt amazing.  I really went to try to combat the lactic acid build up in my very rested muscles. Haha.  I think it helped a bit but my body is SORE.  In places I’ve forgotten have muscle. It hurts so good.  

When I got home from my workout, I received an email that my one year follow up appointment has been postponed. My daughter, mom and myself were going to Maryland next week for my appointment. We were making a mini vacay out of it. And hoping to see cherry blossoms. But because of COVID19 the NIH is trying to free up resources in case they need to respond to this crazy pandemic.  My daughter is so bummed.  Being a 7 year old doesn’t help her understand the complexity of this entire situation.  I understand everybody is trying to do their part to prevent the virus from spreading with all the cancelled events and things.  But I do not understand the hysteria and rushing to the store for toilet paper among other things.  Wash your hands people.  And don’t flood the emergency rooms with things that are not an emergency.  Anyway, I digress.  Hopefully we can get my appointment rescheduled for a couple months from now and she can still go with me. 

Till next time...