It's Been Many Moons

    The first time I recognized that I might have a genetic mutation was in a biology class taught by Dr. Mark Christensen at Georgetown College. At the time, new discoveries had just been made in obesity research highlighting the importance of Leptin in hunger satiety. It was with interest that I noted similarities in myself and those leptin deficient mice, and for the first time I wondered if I might have a genetic mutation. I put the thought aside because, as many people told me, I was just being lazy.

    I kept telling myself that I was lazy, that I hadn't tried hard enough, as I tried diet after diet; I eventually had gastric sleeve surgery. For years I couldn't understand why I wasn't losing weight after the gastric sleeve. I was doing what the doctors told me, even exercising (which I despise) and over a year later had only lost about 80 lbs.  Other people I knew personally were losing about 30 lbs per month on average. Some people never changed their lifestyle at all and still lost massive amounts of weight. It was extremely frustrating, and really contributed to my negative self talk and negative self image. 

I continued to search for answers, going from doctor to doctor. In 2019, I came across a Facebook add for a study at Vanderbilt Children's Hospital on childhood obesity. The study was requesting DNA samples from people who suffered from childhood obesity. I thought, "What the hell?" and sent in a sample. It was months before I received any word on the results.

    In the interim, I had landed upon a local OB/GYN who specializes in hormonal imbalances. We discovered that my T3 (Thyroid hormone) was at the bottom of the range, but not low enough to flag on most lab reports. I started medication and began to feel relief from the extreme exhaustion with which I had been suffering. I also asked to be tested for Cushing's Disease, due to having many similar symptoms; the test was negative. Then to my surprise, I received the results back from the Vanderbilt Children's Childhood Obesity study - I had a rare heterozygous genetic mutation of the peptide SRC-1 (also referred to as NCOA-1). This peptide is a steroid coactivator, which is needed to help activate other proteins and receptors in the body. Current numbers reflect that > 23,000 people in the US have a mutation on this gene, and the mutations have only been studied in mice.  Approximately 1 in 2000 people are estimated to have a mutation that affects the MC4R signaling pathway, which is a hunger signaling pathway. More about what happens with the loss of function of the MC4R pathway at Uncommon Obesity.

    However, what various studies did show was that SRC-1 is involved in the transport of hormones throughout the body via receptor binding, transcription, regulation of body responses to drugs, various aspects of brain development, estrogen cycle, and more. There are at least 60 known dependencies in molecular function, and other biological processes. 

More about the SRC-1/NCOA-1 peptide here.

    After discovering the mutated gene, I was invited to participate in a clinical trial of a new drug called "Setmelanotide" which now has FDA approval under the brand name "Imcivree." I've been in the trial for more than a year, but alas haven't seen significant weight loss. However other genetic types, such as those with Leptin deficiency, have! Despite my lack of weight loss, things I personally thought the medicine helped me with were: hunger associated migraines, blood sugar drops, daily hunger levels, and nausea. It is a bittersweet month, as I have decided to withdraw from the trial to try to start a family; pregnant and nursing women are not allowed in the study. I will forever be grateful to have participated in this clinical trial, and hope that my genetic material donations eventually lead scientists toward a solution that will be more effective for people like me. 

Despite the hurdles I've faced, and the continued frustration, I am glad to be armed with knowledge and resources. Thank you to all of the scientists researching these little known diseases and thank you to my educators! 

A special thanks goes to Dr. Mark Christensen; without your lesson on Leptin deficient mice, I would have never discovered or understood my genetic mutation. 

The Daily Struggle

Today's post is less about my progress, which is little to none, and more about the daily struggles. When I wrote last, I had gained weight back and that has not changed. I am still at 220 pounds, and I fluctuate between that and about 205 pounds. I admittedly have not followed a good diet and have not been exercising. I have felt very tired since last November 2014 and had some other personal issues going on. I still take 50,000 IU of Vitamin D each week. I also take several vitamins. I have been having blood tests over the last several months to see what may be going on with me. So far the only odd tests seem to be  low Aspartate Transaminase (AST), which is a liver enzyme as far as I have read. I do not know if this is significant at this time. But I will be going to my primary care doctor later this month and we will see if he wants to do more tests.

In other news, for some reason since last November 2014, I have been an emotional wreck. About 3 months ago I was crying all the time for no reason, sleeping almost all of the time I wasn't at work, and really extremely bitchy at work. I finally broke down and went to the doctor and was diagnosed with depression. I already knew I had anxiety as well from a psych evaluation I had done back in 2009. My doctor put me on Citalopram HBR 20 mg, and this has really helped me. My emotions are back to being stable and I am less tired than I was. However, I still experience pain in my legs and arms, and I still sleep quite a bit. I do not think this has been caused by my surgery. I know I have been through at least 2 other bouts of depression that I did not see a doctor for.

I actually have a really good life, I have great friends, a good job, a great family. I lost my shit when my doctor told me he wanted me on the depression medicine. I told him I felt like a failure.  My doctor said sometimes the brain chemistry just gets out of wack. He asked if I would feel like a failure if I had heart problems or a thyroid problem. I told him no, and he said that I should not feel like a failure now because I had a problem in my brain. So that was very helpful to me in accepting the need to be on medicine. I have to admit that it was much needed. I feel like my regular self now, except for being tired all the time. I am trying some different things regarding that, and may end up having more tests. But I will update when I have more news to share.  I am planning to trying to eat healthier, but I hate to cook. So it is still a struggle to adjust to this life for me. Until next time! Stay strong! You are not alone in this!

One year later

I had my one year follow up about a week or two weeks ago. I didn't really update because I didn't make any new progress. In fact, I regressed and gained about 20 pounds over the three months since my last visit. That really was a let down to hear, even though I could tell I was gaining weight back.

I had already decided before the weight gain reveal that I was going to quit my second job. I was just too tired all the time, every time I planned to go exercise I would end up having to work. This week is the first week I have not worked a second job since November of 2014. Thankfully I am starting to feel better, but I am not quite back to that feeling of being well rested. 

This is also partially because of my ongoing saga with Vitamin D deficiency.  I have also had low protein numbers in recent labs. What surprised me the most however, was learning that my iron was low today. I can't remember a time when my iron was ever low, and it may be a contributing factor as to why I am still so tired. So I will be adding an iron supplement to my daily vitamin regimen again. I was taking iron before just as a precaution, but stopped taking it due to feeling it was unnecessary.

My diet is going horribly......because I haven't been following one. In fact, I have been eating out about every day because I feel too tired to cook. I've been using McDonald's sweet tea sugar highs (54 grams of sugar by the way) to get me through my shifts without falling asleep. This definitely has to change, and I think it will be easier once I truly start getting more sleep. I am also having to take a sleep aid in order to get more than 4 or five hours of sleep at a time. 

No matter how tired I am next week though, I HAVE to get back to the gym...even if it is something low impact like yoga. 

As ever, I still struggle with this weight loss and if you are struggling too we can't let ourselves be discouraged. I am constantly trying to remind myself that if I don't like something that is happening in my life, then I need to find a way to change it.

Somewhat related to that, I am hoping my schedule will change in June. This will put me as having off Saturday and Sunday. If all goes as expected I think this will help me tremendously. This will allow me to spend time with friends and family that I have barely gotten to see over the last year, and will really help my mood. I think I may have been depressed over the winter due to my low Vitamin D as well as feeling cut off from the people I am closest to. I am starting to get back my normal cheerful self. 

There is not much to talk about otherwise, but my next post should see me back on track. I am hoping to be able to report progress again! Until then, thanks for reading and sharing this journey with me!

9 Months Post Surgery Update

Today's blog is not too eventful. I had a check up today at the doctor's office and I have only lost 5 lbs since my 6 month follow up. If I am surprised, it is due to that I lost any weight at all. I actually expected that I had gained weight. But thankfully this was not the case, even though I have treated my body horribly by eating out nearly every day.

Here is my Tanita print out:

Today will mostly focus on the issues I have been having since my last update. Around mid November,  I got an upper respiratory infection which knocked me down for about 2 weeks. Up until then I had been going to the gym pretty regularly and trying to do the circuit workouts my friend gave me. After that illness I just could not shake the fatigue I had been feeling. I ran out of my vitamin D prescription of 10,000 units a week around that time as well. But even with the prescription I was still feeling tired a lot. I didn't even want to get out of bed most days. I spoke with my primary care physician today about increasing my strength for prescription of vitamin D.

It turns out that he had already increased my prescription strength to 50,000 units once a week at my last visit 3 months ago. I guess the pharmacy only saw the old prescription,  because my last prescription was filled at 10,000 units. So, in addition to me not having my medicine for about 1.5 months the prescription for the month or two before that was wrong. It's no small wonder that I could barely drag myself out of bed on some days.

If you don't know much about vitamin D, it is necessary for metabolic function. My personal symptoms of Vitamin D deficiency have been loss of hair, fatigue, depression,  and general weakness. In fact about 3 or 4 years ago, rapid hair loss is how I finally found out I had a vitamin D deficiency.  I am coming to believe that this runs on my maternal grandmother's side of the family. Both my mother and I have a diagnosed Vitamin D deficiency and my uncle, who is biologically my mother's half brother, also has known issues with this. My uncle has this despite all the time he spends fishing outdoors. There are many other things that run in our family which have also been linked to Vitamin D deficiency in different articles I have read: Asthma, Irritable Bowel Syndrome, Poly Cystic Ovary Syndrome, and problems with weight.


Anyway, I had all kinds of labs drawn today and I hope to get the results soon. Most of the labs were routine, like for cholesterol and complete blood count and cmp; but he also added labs for iron, zinc, phosphorus, magnesium, and vitamins: B12, A, D, E, K. They took about 8 to 10 vials of blood. We will see what the lab results say as to whether I need to change any of my current vitamins, but as of today I am supposed to be taking the following:

Calcium, a multivitamin,  Biotin (5,000 mcg), B1(Thiamine)(100 mg), and Vitamin D 50,000 units.

My nurse practitioner at the surgeon office also wants me to start keeping a food journal, drink 64 oz of water a day, and go to some of the support meetings for people who have had the surgery. These are goals I will be working on as well as getting back in the gym. 

That's all for now. I will try to update everyone when my labs come back. I didn't take any pictures because I really look the same in appearance as my last blog. 

6 Months Post Surgery Update

I can't believe it has already been six months since my Gastric Sleeve surgery! So much has happened since I have last written, so this may be a long post.

Lets first discuss how I was able to cross several things off my bucket list! 

#46. Be a 911 dispatcher

I discussed in previous posts how this ended up working out. While this did not end up working out, I still learned a great deal by my experiences with the agency I worked for at the time and also the Kentucky State Police who graciously allowed me to observe with them for almost 6 months. Even if I wasn't good at that job and didn't receive great training, I still use the things I learned at that job and during my observation time with KSP in my current position as Deputy Jailer. 

 #17. Go to Hawaii!
I am so blessed with good family and friends who all helped in making this trip possible. My cousin especially, who paid for most of the trip, and my mother, aunt and uncle for giving me money for my birthday. We did so many amazing things on the trip! Swam with Dolphins at Sea Life park (#24 on the bucket list) and an additional bonus of swimming with wild Sea Turtles! It was so breathtaking, I can't tell you how many times I had a happy cry! So while most people were dreading age 30, I was living it up! I really think my 30's are going to be my best decade.

#47. Be a police Officer

This one is half accomplished. While I am technically a sworn officer as  Deputy Jailer, I do not receive the same training as street officers. Moreover, the scope of my duties mostly lies within the confines of the jail-unless I were to ever qualify for a transport, or be deputized by another agency. If I am completely honest, my dream job would be that of  Kentucky State Trooper. This is something that has helped drive me to do better. I still struggle daily, but I will discuss that momentarily.

#6 Begin a weight training program

I wouldn't say that I have exactly begun a weight training program, but I have begun an exercise program and I feel great! I have been going to the Bowling Green Athletic Club and mostly taking a class called "Barre Basics" taught by Karyn Rafferty. This class works your muscle groups based on ballet techniques and also some Yoga and Pilates. I get better at it every time I go. I have also been following the Facebook of Personal Trainer Tammy York, who gives amazing tips on diet and exercise, as well as positive encouragement every single day.  I also follow the You Tube channel Fight Tips. Fight Tips not only gives you self defense suggestions, but also tips on how to improve your health and push yourself physically. Last, but not least, I have received much needed workout instructions and fitness advice from a new friend Aschon Karbasi, who provided me with this nice Circuit Training starting workout.

It may be only 16 Minutes, but if you do it correctly and push yourself to involve your whole body it will burn up those calories! I sweated more in 16 minutes doing the Circuit Training than any of my other classes or workouts I have tried. I think it is easier for me to put more effort into the 16 minute workout because your brain says, 'Oh it's only 16 minutes." Two days after my first go at the Circuit Training and I was feeling pain in muscles I didn't even know I had.

 _______________________________________________________________________________ 

Lets take a break from my bucket list, and discuss some of my struggles. My confession today is that I have COMPLETELY blown my diet. I eat what I want without regard to the nutritional value, and it has been ongoing for the last month and a half at least. While I am still losing weight, this has to stop. I can recognize myself getting into the same patterns of behavior that I had before my surgery. I like too many sweets, too many carbs, too much junk food, too much sweet tea. Sweet sweet sweet. After being so sick of sweet stuff on my liquid diet, it seems to be all that I crave right now. I know these cravings are all coming from my food choices; too much fast food and too much sweet tea! Sweet tea is like my crack. My crack used to be Mt. Dew, but as I have promised myself never to drink carbonated drinks again, sweet tea was my natural go to drink. I have drunk very little plain water this month and my body feels the loss of it. 

So what am I going to do about it? 

I'm going to reset and start again. The one thing I am grateful for about all the diet tips and workout advice from the above mentioned people is that they offer encouragement. They don't berate you for falling, they encourage you to get back up. The words "Get up, start again, you can do this, try this instead" these are of great help to me. I also like the fact that all of the above mentioned people are not afraid to show others that they struggle. They teach us through their struggle and I really admire and try to emulate that. "No one is perfect" is a statement often made; while it is one thing to hear that, it is another to understand it. 

The struggle of weight loss will never go away for me or anyone else who is on this journey, but I think it helps to know we aren't alone. When I had this surgery, I never though it was going to be easy. All the time I spent researching the surgery, and all the time I spent reading about others' experiences, I knew I would struggle. Perhaps I am not struggling to lose weight thanks to the surgery, but I am struggling to have a healthy life and to reach my goals and dreams. That will never end, but losing the weight has really helped me to be on the path that I want my life to take!

Drumroll please!

Now it is time for my progress! I am so excited to say that where I started in a size 22, almost a size 24  womens, I am now a size 16 and steadily edging closer to size 14. Where my highest weight right before surgery was 270 lbs, my current weight is.......

199.5 Lbs

On the left is the day I came home from surgery at about 265 lbs. On the right is me on 10/27/14 at 199.5 lbs!

After learning how much weight I lost, I of course bawled and squalled. My doctor, Teresa Stidham, ARNP said that I had lost 22.5 lbs since I had seen her 3 months ago. SO HAPPY!!!!!

3 months Post Surgery Update

I am so happy with my progress this month! I went to my 3 month follow up visit and I am now at 220 lbs! Which means that I have lost a total of 45 lbs since having my surgery! I will be honest and say that I did not reach the goal my doctor set for me, but I am still so happy.

Yesterday when I realized how much weight I have actually lost, it finally dawned on me that this surgery has really worked for me. Also, no matter how much pain I was in after the surgery; no matter how much I stressed out over the entire pre-approval process- it was so worth it. Even if I only lost 45 lbs it is worth it to me.

I won't deny that I have been quite fatigued due to a number of reasons: low protein intake, history of Vitamin D deficiency,  possibly low on Vitamin B12, and also I have been working at my new job on floating shifts. All of these have contributed to my tiredness.

However,  I also feel REALLY great! My bones don't feel  like so much pressure is on them. I am starting to fit into clothes I haven't been able to wear in 2 or 3 years. I feel so blessed to have been able to have this surgery.  In the past my weight loss has felt like the punishment of the Greek legend, Sisyphus; who's punishment was to roll the rock up the hill and when it reached the top the rock would always roll back to the bottom and the cycle was repeated into infinity. I no longer feel like that, for the first time in my life I feel like I can reach my healthy weight!

Weight and food will no doubt always be a struggle for me, but I have learned that I can occasionally enjoy eating out or eating regular food. That's not to say that I go crazy, but my occasional cheating has helped me to reduce stress. By not constantly obsessing over my diet, I can still enjoy normal life. On a normal basis though, I do still try to maintain the instructions of my doctor which is less than 30 grams of carbs per day and at least 60 grams of protein per day.

Speaking of protein, that is something I still struggle with. Although I do eat some kind of  protein every meal, chicken, fish, or beef, I am still far short of my needs. I will have to start drinking protein drinks again. My hair is falling out by the handful. Luckily I have really thick hair so I am about the only person who notices. I thankfully don't have any bald spots. But my doctor ordered a very detailed vitamin panel on me and I had blood work done yesterday.

So to end this, I still have a ways to go on my weight loss journey, but my goal is within reach! I am so excited!  Below are this months pictures and my Tanita scan results for yesterday!

On the left is the day I came home from surgery, on the right is yesterday at my follow up visit!

2 Months Post Surgery Update

Today will be a short blog. This month has been a bit of a roller coaster. 2 weeks ago my cousin moved down with me and we have been getting him settled in. We have been having a great time because we both play video games and have similar interests. However this week turned south when one of my aunts died unexpectedly.  She will be missed greatly.

On a more positive note, the day of her death I found out that I have gone down to 236 lbs. Which means that from my starting weight of 270 lbs, I have lost 34 pounds! I am very happy about this. I have been eating things that are bad for me though, so I need to cut that out if I am going to lose more weight.

Here is a picture of my progress. On the left is the day I came home from surgery,  on the right is from today.  I don't think I look that different,  but everyone else says otherwise.