Valentine’s Day is all about the many different kinds of love we can experience. I’m going to talk to you about self-love, perhaps the hardest love to achieve.
DON’T BE LIKE ME! I am going to tell you a story and I will tell you the whole story. I am telling mine because if it helps just one person it will have been worth it. My name is Pat Smiley and like many folks today, young and not so young, I struggle with some health problems. What I am hoping to do is to share my story with you so you can lessen some of your own troubles BEFORE you create more of them. So many of us have serious health challenges and much of it stems from the way we’ve been living in modern times. I have no medical training, I am not a doctor but I am a person who has had multiple doctors for many years. Anything you are concerned about, you must speak with your doctor FIRST. I am sharing my story so that you will talk to your doctors about your own health and take charge of it and reclaim your life.
I am a child of the 50’s – 1953 to be exact. I was born in Philadelphia and grew up in Philadelphia. I am a child of the city. At varying times, we lived in Rockledge. For 45 plus years, we’ve lived in Frankford. This past March, we moved to Chincoteague Island, VA, on the Eastern Shore and, for Bob and I, it’s been a good move.
When I was born, I was the first of five to survive. I would have had an older brother but my Mother had had a miscarriage. Well, you know how first babies are, if you’ve ever had one or are one. Whenever I cried, my Mother would kindly feed me – I went from 6 lbs. at birth to over 9 lbs. in a month or so. I had read that when you get your fat cells as an infant, you have them for life. So, of course, I reminded Mother of this. I also would tell her I got in the wrong lines for other physical issues as well. My Great Aunt Pearl would take me out on the weekends and we would stop to eat – she was thin as a rail, of course – never more than 110 lbs. Usually, it was just chicken noodle soup and a dessert. My Mother wasn’t too happy because she was cooking dinner for us so I had to really eat both dinners, too.
My first job in high school was working at Dairy Treat at Huntingdon Pike & Church Road in Rockledge, PA. I would take part of the money I earned and make hoagies to take home for my parents and me. I started to eat just by myself to make myself feel better. When I graduated HS, I weighed 160 pounds but that’s my goal weight now as I would eventually gain 120 more pounds. My Great Aunt, Theresa, would tell me I was heavy but neat. My father would talk about “for health’s sake” but he wasn’t the best example either. When I worked at the Federal Reserve Bank, I went out with my work friends and I remember I bought 2 handbags. My Mother said I was a spendthrift. But I could buy handbags; I couldn’t just buy clothes off the rack. My Mother was more tactful and always wanted me to have somebody tailor my clothes. I was truly a fashion disappointment to her but my other sisters made up for me!!
In high school, I lived at the furthest boundary you could, so I didn’t have school friends right around me. For some reason, I just didn’t fit in with the other kids around either – by age or by temperament. I was lonely. My prayer into my early 20’s was that I would find a good friend. I was blessed to find Bob Smiley but, I think women also need to have good, close women friends, too.
When Bob and I were courting, I’d say, “I can bring ham and cheese and we can make sandwiches”. I was married within 2 years but I wasn’t nor am I a cook. So it was convenience foods, eating out and bad habits, never any real exercise. I was going to school at night, in the summers, too. I was teaching at All Saints School in Bridesburg when I became pregnant with our son, Jim Smiley, who was born in 1978.
I took such good care of myself when I was pregnant – only gained 20 lbs. and never had caffeine. When he was 22 months old, I started a day-care center at Oxford Avenue and Foulkrod Streets – Neighborhood Child Care Services. The hours were 7 AM – 6 PM and we had things to do 7 days a week. I did this for 10 years and consider it wonderful work and even, perhaps, the best work I’ve ever done. My weight would affect Jim. He would worry what would happen to me – to him, if something happened to me. He once offered to pay for my weight loss surgery. This “weighed” on me, too, because Bob felt much of the same way. So add guilt to the weight that I was already carrying! But, like anything, it took a toll and by the 1990’s, my weight was 285 pounds and would stay there in that area for at least the next 30 years. I would teach at St. Joachim, take temporary jobs and work for 15 years for the School District of Philadelphia (SDOP) in their Early Childhood Program, Comprehensive Early Learning Centers, where I was a Center Director. I was also a supervisor for a brief time. More about that later.
My Mother had uncontrollable high blood pressure, I developed it in my 30’s but it has been very well controlled with medicine. Doctors always asked me did I have thyroid problems? No, not according to tests. The thyroid can produce antibodies which make it look like your thyroid is working but really isn’t. It wasn’t until a TSH test was developed, in the 1980’s, I believe, that showed I did have a very slow, underactive thyroid. This was probably why I gained 15 pounds every year like clockwork but now, I already had the weight. Chronic underactive thyroid is Hashimoto’s Disease and I have that and will take generic Synthroid for the rest of my life. I mentioned I was a Social Services Supervisor for the School District for almost a year. I visited 15 centers quite regularly. I was always on the go!!
By Christmas 1993, I felt run down like a virus, etc. On Christmas Day, I was at St. Joachim Church for Mass and I saw the priest twice – I was seeing double! By the end of the day, I couldn’t chew my Christmas dinner. I couldn’t make my facial muscles work and had great fatigue. I couldn’t walk far and my breathing was difficult. It was Bob Smiley who determined I fit the description of someone with Myasthenia Gravis. My primary said I didn’t because I wasn’t typical – I still was fairly robust – like the Energizer Bunny always. But the blood test confirmed it, I would have an EMG test and a CAT scan that discovered I had growths on my thymus which is very common with MG. I would basically have “open heart” surgery where my chest was cracked open and the 5 thymomas removed. I would have to take generic Mestinon and later, when discovered, generic Cellcept, an immunosuppressive drug which I would also have to take for the rest of my life. That made my MG even more manageable. But, at least, I was able to return to normalcy and that means everything. The day I was discharged from Jefferson Hospital downtown, we went to see Mother Smiley who was in the hospital – she couldn’t believe it when I walked in and it was a real surprise!
When I was 57, in 2010, I was diagnosed with beginning endometrial cancer. It was never a clear cut case – my biopsy results had to go to Harvard and the doctors not wanting to take any chances, advised me to have a complete hysterectomy, which I did. No problems since, though I have a 42 inch scar, because of the way the surgery had to be done to support my abdomen which is where I carry my weight and the worst place to have extra weight. Also, weight was a contributing factor to endometrial cancer.
My sisters and I would tease my Mother that she gave us her bladder issues, too. I was diagnosed with interstitial cystitis – foods can irritate your bladder and you have to make lots of trips to the bathroom. Overactive bladder, too, I used to joke that I knew where every bathroom was from Philly to New Hope – now, I’ve got Delaware, Maryland and the Eastern Shore of VA covered, too. So, to help with that bladder pressure, I take oxybutynin. I’ve had eczema for years – when you have thyroid problems, your skin is very dry so I moisturize daily. When my blood tests showed my blood sugar levels were rising, my primary begged me, “Mrs. Smiley, please don’t get diabetes; it’s one thing in your 80’s but not in your 60’s”. He and I had a great deal of respect for each other but when I seemed not to be trying, he would just say, “Mrs. Smiley, you’re a train wreck. Call Dr. Kevorkian”. It made me laugh.
Well, I obviously didn’t listen, I got diabetes and never really took it that seriously. I would have hernia surgery in 2012; appendicitis on Christmas of 2014 and shingles for Thanksgiving in 2016 that did not fully clear until March 2017 and my left eye’s cornea was damaged. I was told not to get vaccines because of my compromised immune system and possible effects on MG. But that’s changed now and I just got a flu shot 2 weeks ago. I will get the shingles vaccine soon though I know there’s a waiting list. If you’ve had Shingles once, it’s more likely to come back.
In the last 2 years, I knew I wasn’t doing well. I didn’t feel great and I knew I was headed on a path of real trouble. I did what I could, I tried to diet but, like so many other times, I failed and failed miserably. I didn’t think there was anything I could do to change things. I had tried. I lived with my weight knowing that it was the one thing I had to, in fact, that I needed to conquer or else I would die. I did see someone to talk to about my issues regarding food and weight but I always gave in and gave up. I thought I was being good to myself. The truth is, I am addicted to sugar and carbs. My mood changes when I don’t have it – you can work through it but I had used it to feel happy, for energy to keep me going all my adult life. All it really did was run this body down. I just saw my primary last week and she said, “Food addiction is real”. You don’t need to convince me – I know I’m addicted to sugar and arbs.
It’s also part of the reason why Bob and I needed such a radical change starting with our moving to Chincoteague. I didn’t fully realize it at the time but I felt moving here would be a chance for me to get everything together and get healthy. It felt like it would be a one year retreat without all the distractions I was used to so I didn’t have to deal with my own problems. I joke with people that we’re from Philly and there’s a cheesesteak or pizza shop on every corner. When I got here my daily blood sugar was 393 and my latest A1C was 12-13. I really should have been dead. Back in Philly, it wasn’t always that high – I tried Metformin – it gave me heart palpitations so then we tried Glimepride and that, combined with the Lisinopril I take for HBP gave me severe stomach pains. I had to stop that. Finally, I had to inject myself with 10 mg insulin daily. Everything I just told you about also means I have “metabolic syndrome” which are risk factors that create “The Perfect Storm”. I have HBP, overweight and I carry it all around my middle and diabetes. High cholesterol is another factor but I don’t have that. Would you believe I have 3 sisters that do and have to take medicine for it, but I don’t? So….
The stress of seeing the future and knowing it wouldn’t be in Frankford and everything happening so quickly with our move, there wasn’t time for anything else. That’s another big part of the story. We, especially women, can take such good care of others but while we’re doing that, some of us are not so good of taking care of ourselves. Bob and I took care of my Great Aunt Pearl for 13 years, Bob’s Mother and then my Mother. The joy that that all was, I, especially, put all of them first – I did that, not them and Bob followed my lead, too. We did not take care of ourselves. He was eating whatever I was eating. If you go to a doctor as a couple, if the man has some weight to lose, the doctor will look at the woman – at least they’ve always looked at me. The specialists I saw, I would say to them, “I saw the very nice letter you sent to the primary. ‘Hello, Dr. So and So, It was a pleasure to see your morbidly obese patient, Patricia Smiley, in the office today’.” I really got a laugh from them with that one and they said that I was right; that is what they write.
Here in Chincoteague, you’re not bombarded with every food chain, franchise or a plethora of diversity. Many places close up and this is an island resort so it’s not cheap to eat out anyway. So, in many ways that has changed for us. In looking for a new primary provider, I was referred an excellent one who is part of the Eastern Shore Rural Health System. There are several medical centers and two of them also have dental centers up and down the Eastern Shore. At my first appointment, I said to her that I wanted to lose weight and I really did. Well, given everything I had told you, I was very motivated to change. So, Doctor connected me with an excellent Health Educator. My problems were such that I needed to lose weight – that was the best thing I could do and it’s turning out that that is the best and only thing I can do to live.
They suggested the Ketogenic Diet which is not for everyone which is why I can’t stress enough that you must talk to your own doctor. What I always knew was that carbohydrates are my downfall. I never met one I didn’t like or didn’t want to eat but carbs can really throw your whole system out of whack. That was mostly what I ate. About 10 years ago, I had lost 50 pounds twice but gained it back. I had lost 10 pounds and was down to 275 when we came here in March. In May, I started the Ketogenic Diet and lost 30 pounds. I also started walking, with Bob, at least 10,000 steps a day. I did intermittent fasting. My diabetes disappeared, all my blood tests were normal and I was feeling great, my middle was much flatter and not bloated. My family was making a fuss of how good I looked. The Ketogenic diet is replacing carbs with fat – so you could have bacon, steak, butter, eggs, cheese, etc. Fats will keep you fuller so you’re not as hungry. Well, people came to visit and I used that as an excuse to eat while they were here. I regained 20 of the pounds I lost. Well, I kept seeing the Health Educator and I lost those 20 pounds again. But then, same scenario, I thought I felt better having the carbs (that turn to sugar) and this time I regained 23 pounds. I’m back at 275 pounds.
Plus, I was having some stomach issues. I don’t know what would trigger it but I would get severe pain across my abdomen. These occurrences could go on for hours. There hasn’t been a diagnosis but if I get an attack like that again, I’m supposed to go to the nearest ER which is 25 miles away. This is because it can only be determined what’s causing this problem while you in the midst of having an attack. Thankfully, that hasn’t happened for months. It’s true, you do have to think about medical care when it’s not just around the corner anymore. There is an urgent care not too far away and I have been there several times as well for other issues. It was not easy when we first moved here. I had signs of bigger problems.
Doctor thought it might be diverticulitis so no more peanuts or popcorn. But it would turn out that’s not what it was. I still stay away from peanuts and popcorn because I don’t want those troubles. I kept having some stomach issues and I had severe itching that can be an indicator of liver problems. So, I wanted to see a gastroenterologist to try to find out what was going on. I knew something wasn’t right!
Two and one half years ago, I had seen a gastroenterologist up home because my primary told me my liver enzymes were elevated. So, he prescribed an AST test and other tests. He would call me and tell me I had results pretty well off the charts and could be at risk for cirrhosis of the liver in the future. I did have a fatty liver – well, of course I did. l thought, well, I’m trying to do what I can so it will be okay.
My new gastroenterologist in VA Beach (and he is wonderful, knowledgeable, and caring) was very concerned about those tests and he ordered new blood tests, a CAT scan, then an endoscopy and then a liver biopsy and found that I have an enlarged spleen and I have varices (dilated or large blood vessels) in my stomach, not in my esophagus which is more usual. It’s been decided mine are at low risk of rupturing and bleeding so we had hoped to treat them with a beta blocker to lower the pressure to keep them from forming or getting worse. However, the enlarged spleen and these varices, together with the liver biopsy would prove that I have NASH (Non Alcoholic Steatohepatitis) cirrhosis. I don’t drink but this is the type of liver disease you get from other factors not alcohol. My liver is already scarred and inflamed. I have a Level 1 stage (of 3 stages) of NASH and it’s mild (I’m not experiencing symptoms of water retention, confusion) but the cirrhosis of the liver can lead to cancer or likely for me, liver failure requiring a liver transplant. While I listened to the Doctor tell me about this procedure and that one, I looked at him intently and then I burst out crying. I was sobbing. Because I realized that I had done this to me – nobody else but me. I said I was sorry for crying but he had to know how in living with my weight problem, I had tried and tried. I just kept failing.
Doctor referred me to liver specialists at the Virginia Commonwealth University (VCU) Hospital in Richmond, VA. What can I do? There isn’t a cure, they just looked at me and Bob and I said, “You’ll need a liver transplant”. But you can lose weight, possibly slow down this disease. So it’s up to me to lose the weight and control the other risk factors like blood pressure, diabetes, cholesterol, etc. My track record is not a good one. But the alternative is not one I’m ready for either. So, we’ll monitor with ultrasounds and endoscopies every 6 months. If liver cancer is found early, there is much doctors can do for it. VCU has a specialty team that addresses these issues of cancer and liver transplants.
Every doctor has stressed losing weight and exercising. Even 10 to 15 pounds makes a big difference as many of you will know. I was told to follow a low-carb, Mediterranean diet. The doctor said he wouldn’t eat beef if he were me so I won’t. I’m still going to combine it with Keto, because I like much of the diet, but not have the especially fatty items like bacon, beef, butter, etc. I have to limit salt as well. Of course, exercise is always important.
I tried the beta-blocker but within a day, my MG systems were worse. I gave it another day but then I had to stop. It’s known that beta-blockers can exacerbate MG systems. I was replacing a water pill so I wouldn’t have to go to the bathroom as much. I wanted this to work. But I had severe shortness of breath and difficulty walking. It took a week for the effects of the medicine to go away but the symptoms were as bad as the first time I had them 25 years ago. Shows you how much you may just be on the edge of real catastrophe.
It’s been a long story but one I hope that shows many conditions can develop but if you do not deal with them, they can steadily get worse until they are major health issues that put your life at risk. Well, now, I don’t have a choice. The more I read and the more I talked to the doctors, liver disease is becoming so common because of how we eat, lack of exercise, stress in our lives and sometimes our DNA. Inflammation is a word heard more often today and I have come to believe that these many of these issues are directly related to those things that cause inflammation. Doctors have told me the only thing I can do to prolong my life is to lose weight. NASH cirrhosis can progress quickly.
Why would I share all of this information? Because it will help me to do what I have to do but I hope it also stops you from making unhealthy choices. We all have our trials, our challenges and those things that can make us feel less than what we are. If something in life knocks me down, with God’s help, I always get up. By doing this, I am holding myself accountable. That’s a good beginning. I believe that we can help each other with information, support and caring, another reason I’ve shared with you. Thanks for reading! If any of this rings true with you, love yourself enough to take better care of yourself! You and your own life, your body and those who love you will be the better and thank you for it!