Well, well, well....
After you haven't blogged in months, it's really, really, really hard to start back up because you have no idea where to start!!
Today is Monday, November 2nd, 2015. We still live in the RV full-time. Currently, we are in Maryland right outside of Washington, DC. The blog ended (with the exception of the homeschool curriculum posts) with us in Las Vegas. I've put off blogging about what happened in Vegas because it truly traumatized me. Ever heard of PTSD? Post-Traumatic Stress Disorder. It's a long story. A really long story. No words, though, will fully explain well enough what happened.
First you must know, I had Papilliary Thyroid Cancer in 2007. I had a Total Thyroidectomy (in 2 separate surgeries one week apart). This means my thyroid was completely removed. Your thyroid is responsible for so much in your body like your body's ability to regulate temperature, your metabolism, your energy level, your heart functions, etc. I take Synthroid every morning. After my cancer was gone, I got back to my normal life easily with little to no issues (except it did cause my miscarriage in 2008). I thought I was a 'lucky one'. I have met in-person other thyroid cancer survivors and have 'met' lots online. A lot of them struggle with lots of things. I didn't have any struggles. Now, though, I can say, "Stupid Cancer. I hate you."
In May 2015, while we were in Texas, I started feeling a lump in my throat...every day, all day. I felt it when I swallowed and breathed. It caused me great anxiety because it truly felt like my airway was being obstructed. I remember eating spinach one night and feeling the spinach just hanging in my throat. Every bite I swallowed, I had to drink at least 2 times to get food to go down. I got an emergency appointment to see an endocrinologist in San Antonio. Blood work and an ultrasound was done. Nothing was found. Blood work showed that my TSH (Thyroid- Stimulating Hormone) could have been a little lower than what it was...or so this was this endo's opinion. So he increased my Synthroid dosage from 88 mcg to 100 mcg.
We left Texas May 16, but I didn't start the new dosage of Synthyroid until about a week later. (When we left Texas, one of our RV tires exploded....still haven't done the blog post about that). So...it takes a good 4-6 weeks for your thyroid levels to level after changing a dosage. The first 3 weeks in Vegas were great. I had my typical fatigue and shortness of breath due to my anemia. And then the temperature reached 104 degrees. I experienced my first episode of heat intolerance. It wasn't severe....I had to get in the air condition, put cold wash cloths on my face and chest, and it took a good while for me to cool down. Nothing major.
Then, one day the boys and I got in the truck to go to a friend's house to go swimming. Within minutes of leaving, we were sitting at a red light, and my heart started racing. My head starting spinning, I was dizzy, I was seeing black, rapid breathing, and my hands were tingling and numb. I thought for sure I was going to pass out. The temperature in the truck read 113 degrees. It's the scariest feeling to know that you are either going to pass out or die, and you are driving with your children in the back seat. I immediately pulled over into the 7-11 parking lot. I wrote my husband's phone number down on a napkin for my older son. I told him to call 911, then daddy, if I pass out. Then, I called my husband, told him I felt like I was going to pass out, and I was trying to look for the streets signs so I could tell him so he could tell the 911 operator where I was in case I did pass out. Now here's the really crappy thing about being a 'one-car household'.....and especially when you are thousands of miles from 99.9% of people you know. My husband was stuck back at the RV. He couldn't come and help me. I decided the best thing to do was to get out of the truck and get inside the air conditioned 7-11 and buy cold water bottles. Granted we had water in the truck, but they were no longer cold. I was also thinking, 'I would rather pass out where people are around so they can get me the help I need and help my boys'. My body was extremely shaky. My legs almost didn't work. After awhile, I felt like I was cooling down enough to drive back to the RV....remember we are only about a mile away from the campground....I put the water bottles under my armpits, called my husband and made him talk to me the whole time I was driving back. We made it back safely. I filled the bathtub with 'cold' water and laid in the tub for at least an hour to cool down. I say 'cold' because it's so hot in Vegas, the water that came out of our faucets was never 'cold'...just cool. I survived my first severe heat intolerance episode, and it changed my life.
Two days later, on June 21st, we packed up to go tent camping for one night at the Grand Canyon. This was something that I had planned and was so excited about it. I LOVE tent camping! It was the first day of summer and Father's Day. I was so excited to get there because it was going to be much cooler there than in Vegas. On the way there, right after we drove past the Hoover Dam, I had a severe panic attack. Full-fledge panic attack. See....the night before we left, I did a google search for hospitals near Grand Canyon....and nothing came up! There was one hospital, but it said it was permanently closed. The Grand Canyon has a medical clinic, but it was only open M-F, and we were getting there on Sunday. The Grand Canyon is a 4-hour drive from Vegas, and there is NOTHING between the two. Okay, maybe 2 tiny towns...if you can even call them towns. So I was panicking about there not being any medical care close to us if I would need it because I seriously thought I about died 2 days before from the heat....plus, our son has severe food allergies and asthma and we always know there is a hospital around if we need it....except this time. So, there I was sitting in the passenger seat, silently trying to keep it together. Trying my best to think good thoughts, breathe....when my husband out of the blue goes, "Wow, isn't it crazy that there is like nothing out here. Not even a single house." BAM! I go, "I don't think I can do this." If you ever have experienced a panic attack, you know what I mean when I say 'the walls came closing in and the feeling of doom took over.' My heart was beating SO fast and SO hard, I was convinced it was coming out of my chest. My arms and hands were tingling and going numb. I was blacking out. I was going to throw up. I was going to die. He amazingly found a little road off to the side and pulled over. He was convinced that I needed to 'just walk it off'....said like a true baseball player. He told me to get out and just walk a little bit. I couldn't. My legs didn't work. He had to get out, help me out of the truck, and he helped me walk a little. I finally told him my fears of not being around medical care, and it terrified me that I was going to need it. He gets on his phone to do a search for himself, and he told me we would go through two little towns and surely they had a hospital. I was still feeling really panicked and told him to turn around and find me a closer hospital. The boys, especially Sage, started wailing! They were so mad that we weren't going to the Grand Canyon! I was so upset too...I was so disappointed in myself. Why couldn't I be my normal, carefree self? Why was I full of anxiety?! Instead of the hospital, he took me to an Urgent Care in Henderson, NV. I was diagnosed with having a panic attack and was prescribed 2 weeks supply of an anti-anxiety medicine. By this time, 2 hours later, I felt like I wanted to try and go to the Grand Canyon again. As soon as we hit the Hoover Dam again, I felt the wave of anxiety hit me again. (I have learned that there's something about the vastness of places that give me anxiety as well as the mountains). I took an anxiety pill, and then I started having anxiety about having a reaction to the pill because I am so sensitive when it comes to medication. I had never taken an anti-anxiety pill before. Shortly after taking it, my arms felt like they had cold blood running through them. Ever have an IV and been given medication through it that makes you cold? This is what the anti-anxiety pill did to me. But then....there was calm. I finally felt a sense of calm that I hadn't felt in a good while. The pharmacist had told me it would make me feel 'zombie-like' but wouldn't knock me out. I felt pretty normal, though. I could have fallen asleep if the road wasn't so darn bumpy. We went on to the Grand Canyon and slept in a tent. Didn't take any more anti-anxiety pills, although I was fighting it. Drove back to our campground in Vegas the next day. **Truth being told for the first time right here...where did my intense fear from being far away from medical care come from? I'm thinking that the sudden death of my brother-in-law has something to do with it. He suffered a heart attack at home December 2013. It took 40 MINUTES for the ambulance to show up after calling 911. He didn't get the medical care he needed in time. He died. One of my biggest fears is me dying while my boys are still young.**
This is a good time to tell you that we are in Vegas in June. Our RV is parked on blacktop at the campground. NO shade. The sun just beat down all day long on us. We had to keep our blinds shut all day. We couldn't cook at all because it was so hot. Our air conditions ran non-stop with little relief. The days were 115 degrees on average which means it was about 95 degrees inside our RV. The nights only got down to about 95. When you stepped outside during the day...or even the night....it felt like you were stepping into a furnace and the heat was melting your skin off your body. It was too hot to go swimming during the day. We didn't even attempt the pool until 8:30 at night when the sun had gone down....and even then, the pool wasn't really a relief. Our days were spent doing nothing, but laying in a cool bath of water and putting cool wash cloths on us when we weren't in the bathtub. I learned that I couldn't go anywhere because the truck was always too hot for me to be in it. My hubby would go out and start the truck to cool it off 15-20 minutes before we would go somewhere, but if he wasn't going with me somewhere, then I just couldn't go because then he wouldn't be with me to cool the truck down when we were leaving a place.
On top of the heat intolerance, I was also experiencing all day anxiety. I remember experiencing this back during my treatment for thyroid cancer when my body was forced to have hyperthyroidism. On top of the all-day anxiety, depression set in too. I have never, ever been a depressed person. I got to the point I didn't want to do anything and knowing I couldn't go outside or open our blinds made it so much worse. I felt like a prisoner. Other things I was experiencing were chest pains, irregular heart beat, inability to focus or have a straight single thought, insomnia, extreme fatigue, weight loss, and my hair was coming out in clumps. (Got down to about 107 pounds....weight loss due to illness is not a victory). Once you have had one anxiety attack, you have anxiety about having the next anxiety attack. I was a high-strung, irritable, scared, depressed person.
FINALLY it all clicked. Wait!!! That doctor in Texas increased my Synthroid. All this started happening about 3-4 weeks after I started the new dosage. I looked it up. Sure enough, I had every single symptom of having hyperthyroidism. I was taking TOO MUCH Synthyroid. I immediately called the doctor in Texas to request him to lower my dose. He wanted me to get labs done before he did that.
Hubby had to fly to NY for about 4 days for work. I don't know how I survived those 4 days without him. On the day that he was flying home, I decided to take the boys to see the movie 'Inside Out'. It was playing at 10:30 am in a casino. I knew it would be hot when we got out of the movie, but man....it was beyond hot! When we got in the truck to leave, the temperature read 118 degrees. Within 2 minutes of getting in the truck, I was crashing. The heat intolerance kicked in, and I was stuck in construction traffic. I made the decision to turn left to get out of the traffic which put me on the highway and prayed to God that the next exit down was near our campground. As I was driving, I was squirting water from our water bottles on top of my head, on my chest, on my back, on my legs. I was scared too death I was going to die, and once again I was driving with my boys in the back seat. There are no words to adequately describe these incidents. I can still feel the fear I felt back then today 4 months later. We made it back to the RV safely. My clothes were almost dried by the time we got home because it was so hot and there is NO humidity there. When hubby called later to tell me what time to pick him up at the airport, I told him I couldn't come get him. I knew I could not drive anymore. He had to get a cab.
On the day that I was suppose to get labs done, I had another scary heat intolerance episode. My hubby was driving because at this point I knew I should no longer drive. Within minutes of getting in the truck, I told him, "It's happening again!" The heat intolerance and anxiety kicked in, and I was losing it again. I told him to take me to the hospital instead of LabCorp because the hospital would run labs right now, and I would get the results today instead of waiting days. My heart was going crazy so I got seen pretty quickly. I had a EKG done as well as a chest X-ray. After being there about 20 minutes, my blood pressure was 153/ over something that I don't remember. 153 is super high for me....and this was after I had calmed down for 20 minutes. I got a shot in my arm 'to calm my heart' is what I was told. I had to take 2 baby aspirins. I left there, though, with my lab results in hand. I faxed those results over to the doctor in TX the next day which was a Wednesday.
Thursday night, we went to the pool. I was a zombie. Even walking over to the pool wore me out. The pool water was too hot for me. So I would get in, get wet, then sit on the side of the pool hoping a breeze would come along to cool me down some. Hubby and I talked about what we should do. We had plans to leave Vegas in 2 days and head to Los Angeles. That had been our plan for a year! To head to LA, then drive all the way up the Pacific coast hitting Seattle, WA. He and I both knew that I was not well, though. The heat was killing me. The anxiety was killing me. The depression was killing me. He told me that I was his only wife and our boys only mother, and he only wanted me to get better. And I desperately wanted to get better. So we made the decision that night in the pool that we were leaving the very next day to head back to Ohio so that I could see my old doctor....the one who got me through cancer 8 years previously. I needed to see someone who knew me and my history and who would know that this was not me!
So that's what we did. He worked in the morning, and we pulled out of Vegas around 1 pm on Friday. I was ecstatic to be leaving the heat behind. Once we started driving out of Vegas, though, we had to drive though mountains for 2 days. I ended up needing to take another anti-anxiety pill to get me through that first day of driving. I have learned that the mountains suffocate me. There. I said it. I really thought I was going to love them. They are so pretty in pictures, but they.suffocate.me. I need to see miles and miles in front of me.
By the second day of driving, I felt a ray of hope. I was feeling hopeful that I was going to get better. To be able to roll down the truck window and not have the air sucked out of my body was a huge boost of hope for me! The further east we drove, the better I felt. Physically and mentally.
It took us 5 days to make it to Ohio. The day we hit Ohio and we were 15 minutes from the campground, I get a call from the doctor's office in Texas. The doctor had reviewed my labs from the ER and he agreed that I had hyperthyroidism, my TSH was too low now, and my Synthroid dosage was too high. He agreed to lower the Synthroid dosage. Praise the Lord!
I called my previous endocrinologist in Ohio on Thursday to make an appointment and was pleasantly surprised that there was an opening for the following Monday morning in 3 days! So I got into see him very quickly (which is rare!) and had to give him the update of what the heck had been going on with me. He explained to me that my TSH did not have to be down to zero because the dangers in that do not outweigh the risk my cancer coming back. We keep my TSH low, but not non-existent. I told him that I would rather get thyroid cancer 10,000 times then to go through what I had been going through the past few weeks. Hyper-Hell! So I am back in his care. I am back on the right Synthroid dosage. I am TONS better than what I was! Sadly, I now experience anxiety about 80% of the time that I have to get in our truck because every horrible episode I had happened in our truck....but nothing like I experienced in Vegas. I have not taken any more of the anti-anxiety pills....just the 2 in Vegas. I also still have the heat intolerance, but thankfully we are in Maryland right now in November. We are supposed to be 'wintering' in Florida, and I'm worried that it will be too warm some days for me there.
Needless to say, ANY mention of Vegas, and I instantly have flashbacks. I physically feel sick when talking about it. I have absolutely no desire to ever go to Vegas again, nor do I have any desire to go 'out west' at this point because of what I experienced. I know we were in Vegas at the 'wrong time'. We will never, ever make that mistake again. I can assure you that!
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I didn't know if I would ever type this up. I'm usually a very open person, but for some reason, exposing these truths about my health wasn't something I did lightly. I didn't type this up for attention or sympathy. I did it for my own therapy. Tough girls sometimes get weak too. What's tougher, though, than standing back up and fighting for the life you want?
