Fantastic Voyage
Good Evening Everyone,
I want to start this blog by saying that I have asked my good friend Pam to help me with the medical terminology, because she is a Nurse. Also, she has seen my medical records over the last two months, so she can back up any one of my claims, and can say with 100% certainty that I have not made up anything regarding my illness.
Tomorrow morning, I have two appointments back to back. The first is for an Ultrasound of my Thyroid, because my Endocrinologist found several lumps during my visit last week. The second is a CT of my Thorax, because they also found a lump above my Lung. Many thoughts have run through my mind, the top one being CANCER. But the other one that keeps playing in my mind is how did I got to this point, because when I went to the doctor two months ago for Bronchitis, this is definitely not where I thought I would end up.
So let me take you back….
For over a year now, I noticed I was getting bigger – not fat, but swollen. It was odd because I wasn’t over eating or anything like that, but all of a sudden, I had a belly and my face was rounder. I was also noticing that I would be exhausted all the time. My ex and I would go to functions, and I would constantly say I couldn’t wait to go home and sleep. He even was upset with me because when his family would come over, I would more than likely be sleeping. He would say it was because I didn’t want to be around them. My desire to fool around went down, and I was moody all the time. My concentration wasn’t there, and I would actually lose interest mid-conversation with people. My ex would like to think I didn’t notice it or that I was just alright with the way things were, but I did notice, it did bother me and I kept saying something wasn’t right. Little did we know…
Within one week in February, I went to Urgent Care twice because I thought I had the flu and it wouldn’t go away. Turned out to be Bronchitis. During the second visit, I asked them to do blood work. The results came back two days later, and I was told that my blood pressure was so high that I was at heart attack level, my cholesterol was skyrocketing, I was diabetic, I needed to stop smoking and excessive drinking and I was overweight. I have always been told I had high blood pressure and cholesterol, but being that I wasn’t overweight or ever smoked a day in my life, I decided to see a real doctor.
Enter Dr. Julie Bikhman, my PCP. I met with her within two days of the results, and I started to tell her everything that was going on. She ordered a complete batch of lab work, including tests on my Thyroid. Sure enough, my Thyroid levels were completely off, and I was diagnosed as having Hypothyroidism. She explained to me that the Thyroid (as tiny as it is) controls so many functions in the body, including metabolism, mood, brain function, blood pressure and cholesterol. Under extreme stress, the Thyroid can go completely out of whack. Hypothyroidism would make a person extremely tired, extremely moody, puffy, kill your libido, and some people would even say depressed or bipolar. Things I actually would have no control over, but would have an effect on me. Also, depending on how long this condition had gone untreated, it can open the door to things like Alzheimer’s or Dementia, and even Parkinson’s. Because my paternal grandfather had Alzheimer’s, she felt it was best I went for neurological testing.
Another thing she mentioned was I had a fatty liver and that my liver enzyme levels were pretty high. She recommended a Gastroenterologist named Dr. Robert Mendelsohn. She prescribed 100 MCG of Synthroid for my Thyroid, Crestor for my Cholesterol, Chlorthalidone for my Blood Pressure and a Potassium pill because the Chlorthalidone is a water pill that would make me pee all the time, causing me to lose Potassium. I also was told to change my diet, and stop eating red meat, fried foods, cake, cookies, soda, candy (A BIG ONE FOR ME) and anything else I actually enjoyed. My weight at the time was 189, and I was normally 145-150.
For the first two weeks after starting all these meds, I felt great. I had energy, I was able to concentrate and I started to drop weight. Within two weeks, I had lost 23 pounds. Not bad, I thought. People, including my exes family, were saying I seemed like my old self. Funny enough, all I wanted to do was fool around with my ex because my libido came back, but he was busy prepping for his return to the stage. A week later, following the opening of his show, he and I broke up. He felt I was very negative, and questioned our compatibility. When I would tell people who have known me a while, they couldn’t understand because they have never known me to be a negative person.
I went to have my neurological tests done at Mt. Sinai Neurological Center that week, and they did a whole batch of silly tests like ask me who the president was, and to show them times on a clock. I also had a CT Scan done at Lenox Hill Radiation. Everything seemed fine with the silly tests, and they were going to forward the results of the CT Scan to Dr. Bikhman, so I didn’t really think more of it. At my follow-up appointment, she said to me that I was losing weight pretty quickly, and attributed it to the meds. By that point, I had lost almost 45 pounds in a month, which isn’t normal for anyone. I attributed it to the “divorce diet.”
Shortly after that visit, I was beginning to notice things getting weird again. All of a sudden, my energy dropped, and I couldn’t focus on anything. It took me three days to do the end of month billing, which normally would take me six hours. I also was cold all the time, and it was like 90 degrees out. I would sleep with the heaters on, and still be under my covers in sweats, shivering. Something wasn’t right, and I kept saying to my friends that there was more going on than just my Thyroid. Well, back to Dr. Bikhman I went.
During that visit, I learned that I had lost yet more weight, bringing me down to 111 pounds, and that the CT Scan of my brain showed scar tissue in my Prefrontal Cortex, signifying signs of a stroke. I had no clue that I had stroke at any point, and honestly I cannot pinpoint when it happened. All I can tell you is that it occurred within the last two years. If I look back, I kind of remember a conversation with my ex and his mom right before my brother’s engagement party in August 2013 that my left eye looked messed up. I just remember it being an odd conversation, and I also remember being out in Jersey that weekend, and being on the boardwalk with my ex. He happened to say to me I seemed off, and I attributed it to being nervous about being in my hometown after 20 years. Again, just my opinion. I also cannot say whether or not the stroke brought on my Thyroid issues.
It was explained to me that the Prefrontal Cortex is responsible for a person’s social abilities, moods and emotions, among other things. With damage to that area, things that would normally be shrugged off would become "code red" very easily. I also would be socially awkward and standoffish. Again, something that I can’t actually help or control, no matter how much I don’t enjoy it. I actually wouldn't even know it's happening. She recommended something called Biofeedback with Dr. Caroline Bouton. Dr. Bouton explained to me that the point of Biofeedback is to "rewire" the brain so that other parts can compensate for the damaged portion. She would also give me tools so that I wouldn't hit "code red" level.
Dr. Bikhman ordered blood work and a chest x-ray because I had a cough, and she was testing for Walking Pneumonia. She also wanted to test for things like Lyme’s Disease, Lupus and Mono, just to find out why I was so exhausted. When the test results came back, I found out that I tested positive for Epstein Barr, which is a pre-factor to Mono, and would cause me to be extra tired, especially when combined with Hypothyroidism. She also informed me that the x-ray found a lump above my right lung, and set-up a CT Scan.
Something still didn’t sit right with me, and so I decided to make an appointment with Dr. Lisa Markman, an Endocrinologist. The appointment was scheduled for the Tuesday after the AIDS Walk. Well on the day of the AIDS Walk, while talking to my ex, I started to feel like I was going to faint when he went to hug me, and started freaking out and needed to get away. The next thing I remember was being on the floor and being helped up by a stranger, as my friend Jen, poured water over my head. I’m sure to him, I looked insane or seeking drama, but what I found out afterwards was I suffered a major anxiety attack, which I never experienced personally before.
I met Dr. Markman, and she did a batch of blood work herself, and a Sonogram of my Thyroid. She informed me that what I have is an autoimmune disease called Hashimoto Thyroiditis, which causes Hypothyroidism. It had weakened my immune system so that it was more susceptible to things like Epstein Barr. Her test results showed that my Synthroid levels were way too high and that it was making my Thyroid go from hypo to hyper. With Hyperthyroidism, there is extreme weight loss, anxiety and panic attacks and fainting spells. She immediately lowered my dosage from 100 MCG to 25 MCG. She also found three lumps on my Thyroid, and ordered another Sonogram to confirm. Since starting on the lower Synthroid dosage, my energy level and appetite have returned, my head is not so foggy and I haven’t had an ounce of anxiety or panic or fear of fainting.
I also finally met that week with Dr. Mendelsohn, the Gastroenterologist, in regard to my liver. As he explained to me, a fatty liver is nothing to worry about most of the time. But because I have high enzyme levels, and a fatty liver, and Thyroid issues, it’s more than likely I am dealing with a form of Hepatitis. So guess what he did? If you said ordered more tests, you’d be right. I have an Ultrasound scheduled for my liver this Thursday.
All this came out from a simple case of Bronchitis…
So this week, I have many appointments, the biggest two being tomorrow morning to check the lumps. I read today on the American Cancer Society Site that there is a correlation between Thyroid Cancer, lumps in the Lungs and Liver issues. I really need to stop reading all this stuff.
Ever since all this happened, I have been in “bucket-list” mode. I can’t explain why, but something in me tells me this is Cancer. It’s the same thing that knew I had Thyroid issues, and that something more was going on a few weeks ago. Again, I can’t explain it, but I find myself doing things now that I have put off. Case in point, creating my website and blogging. I have even started journaling again, and doing things like yoga and getting back to the gym. I'm even working on making my stage debut because I happen to be a good singer.
I also have found that I am much more in touch with my feelings, and expressing them. I have started to ask for help and support, which is different for someone like me, who likes to feel independent.
I guess the reason I’m writing this is to lay it all out there for the people who doubt what I’m going through, or who want to be angry at me and hold things against me. This shit is scary to read, I get that. Imagine how it feels to be living it. But stuff happens – people die and people get sick. We can’t control those things. All we can do is hold on to the people we say we love. Things were fucked up, and yes, for me, things that should have been minuscule were magnified. I couldn’t control it, and honestly, I didn't know it was happening that way. I can apologize and move forward, working on those things that I am now aware of, but that’s all I can do. Will this ever go away? Nope, I will be on medication for my Thyroid my entire life. There will be terrible times and there will be amazing times. There are flare ups with this, and my meds will have to be leveled at times. But if you wanna throw a person away because of fear of the bad times, you also don’t allow yourself to have the good times either. As far as my brain damage goes, I’m taking control of the situation as best I can, and decided to do Biofeedback so that I can function as normal as possible. Will it work, who knows? But I'm willing to try, and I've asked for people to be there and supportive.
As far as everything else goes, Cancer, or anything else I have been diagnosed with, doesn’t make me unlovable, or a different person. I’m still me at the core. This same person who is considered negative, and moody, and antisocial, and brain damaged, and dealing with all this, is the same person that was still able to love and support and be there when he was needed, even while dealing with this. And he loved and supported like no other. He spent every night at a hospital when his boyfriend needed a shoulder, he showed up for openings of shows and for parties when completely exhausted, he always said hello and reached out when someone or their relatives were sick or going through something, he came up with a social media campaign for a theater that he supposedly hated, and he went to visit someone who was dealing with Cancer so she wouldn't be alone. He even went to the hospital while sick with Bronchitis when someone he supposedly despised was in a car accident. He stayed up at night when his ex had anxiety attacks, and he allowed himself to be put down and treated poorly. Nobody will ever understand what the last year was like for me unless you are going through something similar, or what it took to function everyday, and make myself look ok to the outside world. I knew something was going on, but I did manage for everyone else, at my own expense.
Yep, that’s the one to toss away and avoid.
Tomorrow, I begin a path that can lead me to Cancer. I’m terrified, but it’s life, and I have to deal with it. I can run away and hide and get angry, but that does nothing. So why not just face it head on? Isn’t that the way it is for just about everything in life?
For more information on:
Hypothyroidism: http://www. sarahwilson.com/2014/07/300-typical-thyroid-symptoms-yep-that-many/
Prefrontal Cortex Damage After Stroke: http://stroke.about.com/od/unwantedeffectsofstroke/f/FrontalStroke.htm
Biofeedback: https://www.neuroaid.com/en/blog/stroke-treatment/the-use-of-biofeedback-in-stroke-survivors/