Thursday, June 2, 2016

Let's talk about POTS

Happy Thursday Everyone!

Yesterday I touched briefly on the fact that I was recently diagnosed with POTS and that I would go in to exactly what that is at a later date. While I had planned on talking about this maybe next week, I am having a scary flare up today, so decided that maybe it would be a good idea to talk about it today.

A little over a year ago, I started getting noticeably dizzy every time I stood up. I had ignored it at first, thinking that I stood up too quickly or needed to drink less caffeine. When it wasn't getting any better no mater how much more water I drank or sugar I ate or didn't eat or protein I got in each day, I went to my then Primary Care doctor. He took some pretty extensive blood tests and they all came back normal. He diagnosed it as an inner ear infection and gave me antibiotics. They didn't really help anything, and the dizziness just stayed. I learned to live with it.

About 6 months ago, I had a scary incident with the dizziness at work where I was running in to walls and there was a cognitive disconnect between my brain and my body. I had to actively tell my body what to do in the moment because it forgot the automatic motions. This lasted for a good 2 minutes (my normal bouts of dizziness lasted 30 seconds to a minute). I went in to an urgent care clinic and they ran more blood tests, did an EKG, and a head CT, all of which came back normal. They then referred me to a cardiologist. The cardiologist had me wear a heart monitor for 24 hours, took an ultrasound of my heart, and also took more blood. All of these tests again came back normal.

It was around this time that I started actively looking for a solution on my own. I looked up one of the symptoms that had been written on my visit summary from Urgent Care, which was "pre-syncope" and came up with POTS. POTS stands for Postural Orthostatic Tachycardia Syndrome. The word Orthostatic is what originally drew my attention. The only test that had been performed with any kind of abnormal results so far was the Orthostatic blood pressure/heart rate test. I went from lying on the table with a heart rate of 80 and a blood pressure of 120/80 to sitting up with a heart rate of 128 and a blood pressure of 198/100. These are indicators of POTS.

So, I started doing a little bit more research. POTS is currently classified as a Rare Disease, but really it's just under-diagnosed. For the most part, doctors don't know a lot about it since it was first recognized in 1999. POTS lies under the Dysautonomia umbrella, which is diseases of the Autonomic Nervous System.

While there are many different symptoms of POTS, and a lot of POTS patients have different symptoms, mine include dizziness upon standing (known as orthostatic intolerance), body temperature regulation issues (I am cold all the time and it takes a lot to get warm), numbness in my hands and feet if I stand for too long from blood pooling in my limbs, low blood pressure, and on bad days I have issues with my vision. Today is one of those days. Currently large black spots are popping in and out of my vision. Sometimes I can go completely blind for upwards of a minute. I also will suffer from Brain Fog where it can be hard to speak or connect my brain to the rest of my body.

There is currently no cure for POTS, and it is degenerative, meaning that the symptoms will continue to get worse. There are some medications that can help manage the symptoms, but for the most part people who are diagnosed learn to live with it in one way or another. I have good days and I have bad days, but it's always there. My new cardiologist has referred me to a specialist that he works with at Evergreen Hospital in Kirkland's Neurology department. He specializes in Autonomic Dysfunction, especially POTS. I am hopeful that we can get a management plan that works for me.

At first I was relieved to have the diagnosis, because it meant that a year of going through these symptoms and having no answers and normal test results wasn't in vain. There really was something wrong. Then I very quickly shifted to frustration at it having taken a year to get a diagnosis, and me having to tell the doctors what I thought it was before they would bring it up. I am at a point now where I am feeling a little bit hopeless. I haven't heard from the POTS specialist yet, so I don't have a management plan, and in the mean time I am just dealing with the symptoms. I am also trying not to let this run my life, but it's hard when it actually does run your life. My activity on any given day depends on how bad my symptoms are. Today has been hard to concentrate because I am in full brain fog and having vision issues.

It's also difficult to relax and not live in this place of high anxiety right now because when you have Dysautonomia of any kind, your nervous system has a hard time calming your body down. What I would normally do to relax is work out, but I am in too much pain from the hip joint I injured to do that at the moment. So I am starting to resort to eating. For the last week or so I have been eating a lot more than I normally would, and not because I am hungry. I have been actively trying to numb the anxiety with food. My only saving grace right now is the fact that I am physically restricted to a point.

I'm hanging on for the moment.
Jenelle

Wednesday, June 1, 2016

The Twelve Steps of Weight Loss Surgery

Happy Wednesday Everyone!

So I have really been struggling lately. My weightloss has been stalled for what seems like months, I have not been able to go to the gym because of the pain in my hip that I have been having (which has been extreme this past week), and I am emotionally coming to terms with my POTS diagnosis, which has been harder than I would have thought. I will go in to detail about exactly what POTS is in a later post, but for now just know that it is a nervous system disease.

Between all of the emotional turmoil I have been going through lately, I have been frustrated with the lack of weight loss and wondering what is going on. One of the members of my Surgeon's Facebook support group posted the "Twelve Steps of Weight Loss Surgery" the other day, and it really hit home with me.

According to the National Association for Weight Loss Surgery, these are the WLS Stages of Transformation:

1. Decision Point - You decide to have weight loss surgery (CHECK)
2. Shock and Awe - You feel "buyer's remorse" or are in awe of how little you can eat (CHECK)
3. Grief and Loss - You feel sad about the loss of some foods, rituals, or even friends (CHECK)
4. The Miracle - You feel invincible, like you'll never overeat again (CHECK)
5. Testing Limits - You go back to foods that used to trigger you to overeat, like sweets (OK Hold on...)
6. End of Invincible - The "honeymoon" ends and your eating can be more easily affect your weight loss or weight maintenance (And Here I am)
7. Give Up or Change - You realize if you don't make changes, you will gain weight or stop losing
8. Learning - You open up and learn to pinpoint what your real problems are (not what you assume they are)
9. Experimenting - You go through a trial and error process to discover what really will work for you
10. Self Trust - You develop a sense of self trust and self care that was previously nonexistent
11. Mastery - You regain some control and begin to experience some peace of mind with food, your body, and the scale
12. Freedom - You see that what you really want to do, and what you must do to stay healthy, are one and the same

Right now, I am currently between step 6 & step 7. I know that I have passed step 5. I had gone back to eating junk that made me overweight in the first place, and have been finding myself more and more hungry lately. Luckily, I haven't gained any weight, but I have not lost anything either. I really needed to see these steps to know just what was going on with me.

So here it goes. Starting Monday I am throwing out the bad and going back to basics. The only reason that I am waiting to start until Monday is that I have already done my grocery shopping for the week and need to use up the food that I have purchased. It will be good for not just myself, but for my family as well to go back to clean eating.

Who's with me?

Jenelle

Tuesday, May 17, 2016

Dealing With Emotions

Happy Tuesday Everyone!

I hope you all had a better weekend than I did. I did one of the hardest things I have ever had to do this weekend. I gave my fur baby of 7 years, Emma, to a Barn Cat program in Spokane. I got Emma for free off of Craigslist when she was 6 months old, and she had been all over the West Coast with me. I have seriously been considering giving her up for a little over a year, right after I had my emergency back surgery in California. I felt so bad that she was now confined to living in a room in someone's house, but felt even worse when we moved back home and she was now forced to live in a dark basement bedroom alone all day. Emma has always been a vicious cat when it came to anyone else but me (and even sometimes me). She would growl and hiss and bite and scratch. I knew that if I gave her up to just any shelter that they would put her down and if I gave her to a no-kill shelter she would live the rest of her life in a cage. That's why the Spokanimals Barn Cat program was such a great find. They take in cats that are otherwise unadoptable and give them to farms in Eastern Washington. Their job at these farms is to serve as pest control. They are given food and love (if they want love) in exchange for catching mice.



It was an emotionally draining weekend. I had my Dad drive us, because I knew that if I drove I would end up turning back to get her. I am still very conflicted about the decision. It kills me that Emma might be out in a barn somewhere wondering where I am and why I abandoned her. But at the same time I know that she is getting fresh air and exercise and is being taken care of. It is also a little bit nice to be able to put something in my room without worrying if Emma will ruin it, or put clothing on the floor without worrying if she will pee on it. I am no longer tethered to having to find a place of my own because she wouldn't have tolerated room mates. I can now put flowers in my room if I want without worrying about Emma eating them. I can get nice furniture without worrying about Emma scratching it to death.

All of the emotions that I experienced this weekend really brought back the reminder that I can no longer eat my feelings. Before the surgery, I would have binged all weekend just to numb the pain. I am no longer physically capable of doing that. So the question is, how do I deal with those raw emotions now? I am still learning the answer to that. I have found that being able to work out my frustrations and emotions in a work out really does help, but for the time being I am not medically cleared to work out.

I have never really had to deal with emotions before. I always had a tool (granted a very destructive tool) to deal with them. This is why one of the pre-op requirements for this surgery is a psychological screening. Doctors want to make sure that you can deal with the emotions in a healthy way. I have learned that holding in the emotions only makes them worse. Sometimes it really does help to just cry your eyes out. It is also very important to have a support system around you. Just like with any addiction, I have experienced withdrawals and cravings. It is important to have someone or a group of people that you can turn to to be your "sponsors" and help push you through the hardest of times.

For now I am working through things very slowly. I have good days and I have bad days. Getting rid of Emma was just one of the many things that I have been dealing with lately. Taking things one day at a time and realizing that the good days outweigh the bad is my strategy for right now. One good thing that I can focus on is the fact that I got the results from my 6 month post-op blood draws and have no deficiencies! Nutritional deficiency is one of the biggest concerns with this surgery, but I have taken a lot of care to make sure that I am doing everything I was taught to do and it paid off.

Have a great day!
Jenelle

Friday, May 13, 2016

Liquid Diet

Happy Friday Everyone!

I hope you all have had a wonderful week, and are looking forward to the weekend. Yesterday was my 6 month post op check up at my surgeon's office. They were very pleased with the progress I have made. I have lost a total of 27 pounds in 3 months. They didn't have my lab results when I went in, so not sure if I have any vitamin deficiencies or not. They are going to call me later today with those results.

Today is the last day of the liquids phase of the 10-day pouch reset diet, and it could not have come soon enough. I have been battling with the mental hunger all week, and have broken the diet a few times. This liquid phase was so much harder than the 2 weeks of liquid diet immediately following surgery.

Following surgery, your surgeon puts you on a very strict diet as your new stomach is basically relearning how to be a stomach. They liken it to a newborn baby's stomach. This is what a typical post op diet looks like:

Week 1- Clear Liquids:
-Broth, water, juice

Weeks 2-4 - Full Liquids:
-Protein shakes, smooth soups, melted jello

Weeks 5-7 - Soft Foods:
-Cottage cheese, canned tuna/chicken, pudding

Weeks 9-11 - Transitioning to Hard Foods:
-Slowly introduce hard foods to your stomach and see how the sleeve takes it.

I remember vividly taking 2 hours to "eat" a coffee mug of broth immediately following surgery. The stomach is so swollen after surgery, that the opening inside is no bigger than a ballpoint pen. As the swelling goes down, the opening inside increases, ending up at about the size of a banana.

Not surprisingly, the liquid diet phase has its limitations. There is only so much variety that you can get from liquids, and you quickly get bored of having the same thing. A lot of the liquid diet is trial and error. You find what works for you and what doesn't and move on. One of the things that I quickly learned was how drastically smaller my portion size was. As I prepared for surgery, I must have purchased every flavor of broth/soup base I could find, and a good few of those are still in my pantry.

Here are some of my Liquid Diet tips:

1. Only buy as you need. You may feel like you want to stock up on all of the soups you find (there are a surprising amount of broth options available once you find a store that has them), but you won't be able to eat them all. Only buy one to two soup cartons at a time. This allows you to not only save money on soup that you will never eat, but to keep your options open as well.

2. Where to find the best soups: Trader Joes has some really great creamy soup options. Some of my favorites were their Creamy Tomato soup, their Sweet Corn & Red Pepper soup, and their Chicken Broth with just a sprinkle of garlic salt. Another brand of broths that are really good are Pacific. These were somewhat harder to find, but I ended up finding them at Central Market (a local Seattle Town & Country Market chain). Some of my favorite of those were the Mexican Tortilla soup base and the Chicken Pho soup base.

3. Get your protein in. Right after surgery, you are going to have a VERY hard time making sure that you get your minimum 60 grams of protein in, but it is essential for the healing process. This doesn't have to mean that you are only drinking sweet Protein shakes all day for 2 weeks. One of the things I did was to add unflavored protein powder to the broths that I was eating. This is a good way to keep your protein up without having to sacrifice taste. Another option is Unjury protein broth, which is a chicken flavored broth protein powder. I wasn't a huge fan of this because it couldn't get too hot or it would clump up.

I hope you find these tips helpful not only for post-op gastric sleeve liquid diet options, but for anyone wanting to go on a liquid diet for a few days. It is a great way to quickly shrink your stomach without starving yourself.

Have a great weekend!
Jenelle

Wednesday, May 11, 2016

6 Month Surgiversary!!!

Happy Wednesday Everyone!

I hope your week has been somewhat less stressful than mine. With everything that's been going on in my life lately (lots of doctors visits), I completely missed my 6 month Surgiversary!



It is incredibly hard to believe that 6 months ago I had what I consider life saving surgery. In those six months, I have lost 96 pounds, gone from a size 28 pant to a size 18/20, and gone from a size 4XL top to a size L/XL top. I have gone from a size 13 shoe to a size 11 (losing weight in my feet was a weird bonus). I participated in a 10K walk across the world's longest floating bridge and finished in just under 2 hours.



I have gone from the girl who did everything possible to get out of P.E. in High School (and I was very successful at it) to the girl who couldn't go more than 2 days without going to the gym. I am a completely different person than I was when they wheeled me through the doors to the operating room. I still have a long way to go, but I am more confident than I ever have been that this surgery was the best decision that I ever made.

Tomorrow I have my 6 month Post-op appointment with my surgeon where I find out if I am deficient in any vitamin groups. I have been pretty good about taking my vitamins every day and getting my protein and water in, but I have experienced quite a bit of hair loss, so my body has to be deficient in something. After tomorrow's appointment my next appointment will not be until my 1 year anniversary. I don't know if they will have me set goals, but I am setting these goals for myself:

1. By my 1 year Surgiversary (11/9/16), I want to be at or below 180 lbs.
2. By my 1 year Surgiversary, I want to be able to comfortably jog around Greenlake (3.3 miles) in 30 minutes or less.
3. By my 1 year Surgiversary, I want to have completed the Base2Space Climb (https://www.classy.org/seattle/events/base-2-space-2016/e77086) 
4. By my 1 year Surgiversary, I want to have made 3 new friends (making new friends has always been hard for me)

Update on the 10 Day Pouch Test:
The struggle is REAL folks! I cheated yesterday. I know that a lot of the hunger that I have been experiencing is emotional, because I want all the fried and unhealthy food on the planet, even if I am not hungry. It's also crazy how thirsty I have been, especially since I am guzzling liquids all day. My sleeve has also been very "talkative" and has been grumbling non stop. I am determined to stick with this though.

Have a great day!
Jenelle

Monday, May 9, 2016

10 Day Pouch Reset

Happy Monday Everyone!

I hope you all had an excellent weekend and a great Mother's Day. I went to the Friends of the Seattle Public Library book sale at the Seattle Center Exhibition Hall on Saturday and got 25 books for $25. I then went down to Pike Place Market and got a beautiful Mother's Day bouquet of flowers for my Mom. Pike Place has the best and least expensive flowers in the city. Sunday, my Sister and I took my Mom and Dad to brunch at Peso's on Queen Anne in Seattle. They have one of the best breakfasts in town. My Sister and I then helped my Mom clean out the basement and start getting things ready for our garage sale next month. We topped off the weekend with home made grilled burgers with oven baked fries and grilled corn on the cob. It was a lot of food for my little stomach, and I am feeling a little nauseous this morning.

Lately I have been feeling like my sleeve can take more food than it should be able to. Being about the size of a banana, a sleeved stomach is only supposed to be able to hold up to a cup of food at a time. I know that I eat more than that at a sitting, and I have been increasingly hungry lately. My weight loss has also slowed down quite a bit.

All of these reasons are prompting me to start a 10 day pouch reset today. The purpose of a pouch reset is to get that "Newly Sleeved" feeling back of not being hungry all the time and not being able to eat as much in a sitting. The pouch reset helps shrink the stomach back down to the size that it was post surgery by going on a version of the post-op diet recommended by your surgeon. Here is what my life will look like for the next 10 days:

Days 1-5 Liquids:
-Protein Shakes
-Broths/strained soups

Days 6-10 Soft Proteins/Foods:
-Tuna/canned chicken
-Bean less Chili
-Polenta
-Yogurt/Pudding

-Serving sizes are 4-6 oz or 1 cup
-Only spend 15 minutes eating and remember to chew thoroughly
-Drink at least 48 oz of water a day (no liquids 30 minutes after eating)
-Don't eat until over full, and don't go hungry. You can eat as much as you want within these parameters.

I'm hoping that this will give me the push my body needs to reach the 100 lb lost point by Thursday which is my 6 month post op appointment. I currently sit at 281.6 pounds (94 pounds lost).

Have a great day!
Jenelle

Thursday, May 5, 2016

I'm Back!

Hey everyone!

It's hard to believe that it has been over 6 months since my last post. My life has been crazy hectic, and I haven't been able to find the time to write anything, but lately I find myself wanting to return to this more and more. Finding where to even start is going to be difficult, so let's just start with a refresher.

On November 9, 2015 I underwent a Vertical Sleeve Gastrectomy, otherwise known as Gastric Sleeve surgery. Here is a picture of me that my Mom took right before they wheeled me back for surgery:




On the day of my surgery I weighed 354 pounds, which was down from my highest weight of 375.6 lbs. Now I am no stranger to surgery, having had 5 surgeries in my life before this one, but usually I am a nervous wreck the day of any surgery. This time, however, I was extremely calm. My Mom, who brought me in, was more nervous than I was.

I spent the night at Evergreen Hospital in Kirkland, WA and the first 12 or so hours after surgery were not fun at all. I experienced some intense nausea and came close to getting sick a few times. The first time they had me get up and walk one of my incisions (I ended up with a total of 6 laparoscopic incision sites) started bleeding pretty good, which was a little bit scary, and pretty painful. Walking at all that first night was painful.

The next morning I started feeling a little bit better, and was able to get up and walk around by myself. My ticket out of the hospital that morning was a swallow test with contrast. I had to swallow a radioactive syrup (that was one of the worst things I have ever tasted, tasting like a combination between lemon Pine-sol and Bleach) and they took images of my stomach to make sure that there were no leaks. This test almost made me throw up, but the images came back clean and I was discharged. I took a week off from work, and went back feeling great.

I am almost 6 months post op now, and as of this morning I weigh 281.4 pounds (down a total of 94.2 pounds from my highest weight).



The left hand is a picture taken at my birthday last year by a very good friend of mine. She doesn't like that I use this picture as my before, but It is really the only picture of myself that I let anyone take at my heaviest. I felt so insecure with how I looked. I never smiled in pictures, choosing to make weird faces instead because I wanted any excuse to draw attention away from my weight. The Right hand is a picture taken this morning (wearing my fabulous Cinco de Mayo hat). I still have over 100 lbs to lose, but I am taking my progress one day at a time.

I promise that I am back now, and will continue to write on a regular basis.

Jenelle