Emergency Room AKA Lyme Ignorance Room

Well, as this week progressed, so did SCARY symptoms. I am extremely resilient, I don't think I complain as much as I could or probably should, my symptom tolerance seems to be high, and I seem to be in tune with what's wrong with me. Yesterday was not like that. I still have a hard time explaining how I was feeling other than I felt like I was dying. I started to worry about my organs. My liver, gallbladder, spleen, kidneys, etc, etc. So, I went to the ER and told them as best as I could what I was feeling. Heart flipping around in my chest, breathing issues, shaking, sweating, and pressure. So, they got me back and hooked me up to everything. I literally told myself I am NOT going to say I have Lyme disease because I could pretty much foresee how that would go. Then, Dr. Condescending came in. I have read countless things about doctors telling us Lymies that we are ANXIOUS. That's what this doctor did. I looked at him dead in the eyes, with probably Lyme green hellfire burning in my pupils, and said through clenched teeth, "My symptoms are MAKING me anxious, but anxiety is NOT causing my symptoms". He asked me question after question after question and finally got it out of me that I have Lyme. He literally said with a smile, "Lyme disease. Who diagnosed you with that? Where'd you get that? South America?" I have never been so infuriated in my whole life. I tried so hard to be respectful but I am pretty sure I was not. I danced around the topic as best I could, and tried to just tell him I want my organs scanned to make sure they're okay. He rolled his eyes and said, "Well, if it makes you feel better". When he left the room, I started shaking out of rage. My husband was even mad, and he is generally an easy going guy. So, the doctor came back in, did an ultrasound on all my organs, and told me they were all perfect. He said he'd send me home with a halter monitor or whatever they're called, but I declined and started unhooking myself. Was I glad to know my heart and spleen weren't inflamed from Lyme? Yeah. However, I know that can happen with Lyme and people die from it! They have surgery for it. I wanted to make sure that was not happening. So, we went back home, and I got on the internet and researched Babesia flare. That is what is happening to me. It's been so long that I've had one that felt life threatening, and I guess I forgot what it felt like. Why am I flaring? We are having monster snow storms here, there is a full moon, it's that time of the month, I've been lax on detox, there has been lots of extra activity and stress in my life lately, and to be honest I thought I was winning this fight here for a minute. This is SO rough! I wake up shaking and sweating with a rapid heart beat before my body even has a chance to go through the last normal sleep cycle. I have AIR HUNGER like you wouldn't believe. If it weren't for watching my heart on the EKG, and seeing my oxygen levels, I would think I was suffocating to death. I have enough oxygen, but it feels like when I used to wrestle with my brothers in pillows when we were little and I would have to start screaming for them to let me up. But I'm just sitting here with burning lungs, completely calm, with enough oxygen, but with the feeling of actual suffocation. My heart beat feels like it's in my stomach, then my throat, then skips some beats, then beats to hard, then flips, then I don't even know. My Postural Orthostatic Tachycardia is back. I walk up the stairs and don't even know why I walked up the stairs, then walk into a room and don't even know how I got there. I was on hold on the phone earlier this week and forgot I was on hold like 5 seconds in. I'm also having weakness that I can't describe. Like my body is empty. Like my spirit is trying to escape. Like floating or something. There are not even words to describe Lyme symptoms. New words need to be invented.

I took my own blood pressure, and I've been monitoring my blood sugar and am in the middle of taking new saliva tests for adrenals and hormones. It's so hard to feel like this over the Christmas season, but I have experienced joy. I have CHOSEN to experience joy in the midst of absolute suffering. It IS possible, and my thoughts are with all my other Lymies having a hard time right now. I'm relapsing, or flaring, or herxing. I don't really know. My legs are burning with seering pain, and a lot of symptoms that left are back with a vengeance.

Also, for the record, I just want to say I admire doctors who work graveyard shifts in the ER over the holidays. They are absolutely incredible human beings who do what I could NEVER do. They are some of the most important people on the planet. My rage was not necessarily or personally directed toward this specific doctor. It was toward the complete and utter LACK of Lyme disease education in the medical community. The complete disregard is just so sickening I can't stand it. The crappy tests and the lack of technology. It's not the doctor's fault. It's not. I'm actually not even sure whose fault it is, but placing blame would accomplish nothing anyway. It's just the strangest most helpless feeling in the world to feel as sick as you do, and have zero help in seemingly emergent situations. My sweet family doctor tried to help with blood tests a couple days ago, but of course, nothing came up. All my test came out "normal". I am a VERY sick person, but at least I'm a "healthy" sick person?

Sensory Overload

A year ago, I hoped I would be well enough to go to a movie theater and see the new Star Wars movie with my husband. As the release date got closer, I realized that I would not be better in time. However, I decided I was going to go anyway. So, I took an anti-nausea pill, drank a lot of magnesium, put on my sunglasses, put in my earplugs, got under my blanket, and sat in the very back row with my husband. I looked at everyone with popcorn and candy and hoped that nobody would find out I had my gluten free, vegan, non-gmo, paleo, corn, soy, and dairy free snack in my pocket. I looked at everyone with soda and then looked down at my bottled water. I sat by the stairs in case I couldn't handle it, and had to leave. I knew at any moment, I could experience sensory overload. I could start shaking. I could start hyperventilating.

When the movie started, my brain couldn't adjust to the words on the screen for a long time. However, the sunglasses and earplugs helped keep my nervous system calm. I was pleasantly surprised that I was about 60% safe from everything that was going on. How strange it is to basically induce temporary mild blindness and deafness in order to even have a shot at experiencing something so normal to most.

My stomach acted up really bad during the movie, and was pressing on my lungs a lot. I hoped the lady next to me could not hear my constant belching as a result of Lyme completely wreaking havoc on my digestive system. I worried about not being able to put my legs up. They just had to hang off the chair, affecting my blood pressure. I worried about the seat affecting my joints. When the movie was over, my knees were all locked up and I had to hobble down the stairs. My brain had to adjust from the theater screen back to real life, which was a little unsettling.

I used to be someone who loved big crowds, loved loud music, loved crazy movies, etc. I actually still am that person. It's just so weird to be in this altered body with this altered brain that doesn't allow me to be who I really am. Today I watched a football game but had to sit behind the couch most of the time so as not to be totally overloaded. I love football, and actually couldn't even process it last year. The fact that I'm able to this year (barely) does say something.

The fact that I was able to accomplish any of this is a big deal to me. Measly to other normal, healthy people, but big to me. I get glimpses of normalcy here and there. Here's hoping for more of those glimpses more often.

P.S. After almost dying from disease, I decided I don't like ANY movies where people die. Don't worry, I won't say who dies in the movie, I just take it a little more seriously than most people do I guess. Seeing death and suffering, fake or not, I guess flares up some PTS a little.

Never Too Sick To Try

I forced myself out of the house to go experience life this past weekend with my little family. I refuse to withhold making memories with them, no matter how I feel. I very slowly did a lot of activities these past few days and despite horrendous car sickness, seriously low blood pressure, confusion and memory loss, weakness, and horrendous stomach issues, I smiled for the camera. We must never decide that we are too sick to smile, and I will never let myself be too sick to "try" to not be sick. I definitely have windows of wellness. I do. Lyme gives you bad days and okay days. I take advantage of my okay days full force. People don't usually regret the things they've done. They regret the things they haven't done. I don't want to have any regrets as I go through this illness. I just plow forward, even knowing I'm going to pay for it flat on the couch for hours the next day, like I did today. Today has been awful. My stomach, I think, must be swollen or something. I have every symptom of H-Pylori, but my test was negative. So, it's just Lyme bacteria doing exactly what H-Pylori bacteria does. Except maybe worse. I'm getting disautonomia from an irritated vagus nerve I think, which makes me feel like my body is going to shut down, and I must have gastritis. I need to figure out how to calm my stomach down. If it's not calm, I can't get any of my supplements down. And if I can't get any vitamins, minerals, and herbs down, then I'M down. Many horrible symptoms have been returning these past few days. I need to get back on top of this ASAP.