Sunday, December 31, 2017

A real diagnosis

After my younger sister mentioned CIRS- a disease caused by toxins from a moldy environment- one day, I ventured to learn all about it. I took an eight-week course, I read Dr. Shoemaker's literature on the subject on his website, watched his videos, and read other blogs dedicated to the topic. As I read on, I found that my symptoms matched those of the patients with CIRS and Lyme. Neurological issues such as dizziness, tingling, numbness, and palpitations were on the list. Moreso was the other symptoms that did not fit into any other category such as being unable to exercise - dysautonomia, blurred vision, weird skin sensations, fatigue, muscle spasms, unusual pain, ice pick pain, joint pain, morning stiffness, and much more symptoms I was having which are found at Having already been tested for Lyme, I knew what I had to do and decided to contact doctors who specialize in treating patients with CIRS.

I began my search and found that there were no doctors in Alabama that were trained to treat CIRS so I looked at a long list of doctors in the surrounding areas using a list provided at The list included several in the west region and was left with doctors in Florida, a center in Texas to treat patients with mold, and two holistic doctors in Atlanta. Needless to say, I chose to go with a doctor in Atlanta and made an appointment so that I could be treated as soon as possible hoping for my treatment to begin during my summer break. During my first visit labs were drawn and my husband and I spent an hour speaking with the doctor. He was thorough and explained everything well.

First, he asked me what big events occurred before I began to experience the symptoms I was having.  I explained that I had a car accident earlier that year and that a couple of months later, after hiking, I had a tick on my hip. I then told him how I had been tested for Lyme a year later, but that it had come back negative. Second, he asked me what my symptoms were and he said they all matched the symptoms of a CIRS patient. Third, he explained all the labs that he would draw and what he would be looking for in each and every one of the labs. He gave me numbers and all kinds of specifics and that made me hopeful.

A month later after visiting him, I went back to discuss the labs. My husband walked in and waited for him to enter. He walked in ten minutes after us. He discussed what every lab that he ordered showed and explained what each looked like for a CIRS patient so it turned out that I did not have CIRS. But instead tested positive for Lyme disease. Meaning that all my symptoms were not anxiety, nor in my head but that something inside me was causing all the dizziness, tingling, ice picking pain, headaches, joint pain, palpitations, shortness of breath, air hunger, muscle spasms, and the feeling of being on fire.

Although he said that it would have been better to have come to him when I first experienced my symptoms, as if I had known that it was Lyme, I began to be hopeful. I was ready to feel better. I was ready for relief.

Wednesday, June 7, 2017

On fire!

Usually,  when we refer to someone being on fire during a sport or some type of competition, we mean that they are on point, and are doing a great job. The only other time we use the phrase is when literally speaking of something or sometimes someone being set on fire. This post has nothing to do with either any one of those. Although no one can imagine what it feels to be set on fire, unless one has been set on fire, having gone through that sensation, I can say that I have an idea of what it feels like.   For the past several years I have gone back and forth through two types of  burning sensations. One of those sensations is a feeling of being burned by flames, while the other is an ice picking pain that burns and stings at the same time and comes without warning, and at different points in time. Both causing a sense of terror inside me that have me wondering whether I am slowly dying.

I will never forget the time that I felt as though a fire was burning me. I had woken up to get the kids ready for school with an unbearable headache. As I stood in front of the girls' bed, I woke them up and got them out of bed only to lie down in it myself. My head throbbed and burned. I felt as though my brain was on fire. I could not do much except lie there in pain. I told my husband my symptoms, and he gave me either Sudafed or something like it that put me to sleep. This lasted for several days, and I was in bed the whole time.  This feeling of my brain being on fire happened again a month after and it soon became a monthly occurrence. And then, one day, it had decided to spread over my body.

My right hip, I stared at it, as it felt as though someone was inside my body and took an iron and pressed it against my hip. Again I was bewildered but kept my composure. I tried to calm my worries by not letting it get to me. I realized that something was happening to my body without knowing what it was. I did not want to alarm my husband nor my family so I did not disclose this new symptom that my body was creating to what seemed to me a long list of symptoms. And told myself that if I went to a doctor that they would be unable to help and say that it was all part of my anxiety. Which eventually I did and was placed on some more anxiety medicines. I began to take amitriptyline along with Lexapro. Yet I was still experiencing all the neurological symptoms, and now these weird sensations in my skin that doctors said were caused by anxiety but were not being relieved by the prescriptions. This burning that permeated throughout my body internally was random and burned whenever and wherever.

Not long after that sensation, I began to experience yet another different type of being on fire. This one was a bit more complex, and for the longest time did not know how to explain it to my husband until I studied the symptoms of CIRS, but it was just as painful as the prior feeling. Just as the previous sensation, I experienced the ice picking pain burning and stinging me internally. I cannot remember the exact date, but I remember being in the kitchen washing dishes and suddenly feeling the sensation you get when you have been sitting out in freezing temperatures for hours, or when you have been holding ice too long. Internally, my pinky felt as though someone was holding ice to it and immediately the ice began to pick at my pinky causing it to burn and sting. The sensation lasted for about fifteen to twenty seconds.

 Bewildered, I stood there trying to figure out what could have caused it and understand what was happening with my body. Before this, I had been speaking to my sisters about my neurological issues. They were adamantly searching for answers with me. During this time I was taking medicine for anxiety, Lexapro. This was doing wonders for my breathing and my chest pain. But had done nothing for my tingling, and dizziness. And now I had another symptom to worry about. This ice picking pain that burned and stung my pinky, fingers, legs, arms, and eventually every part of my body imaginable began to occur frequently. I can't say how frequent but I can say it was enough during the day that it stopped me mid track during my everyday tasks until it subsided and I could go on.

From headaches that made me feel as if my head is on fire and sensations of every part of my body being burned to the ice picking pain that burns and stings my extremities, I go back and forth in this never-ending torture chamber that does not cease, and leaves me desiring nothing more than to be rid of it- no matter how. But strive to live no matter the pain. And the good days make it better.

Monday, January 2, 2017

I look good

Do not be fooled by the title, though it may seem that I am full of myself, I am not. Even though some may think me as such, I try not to be the kind of person that thinks she is, nor places herself above others. Those that honestly know me know that I am not one of those who degrades others to make herself look better or think better of herself. My title could probably be better, but it is the whole focus of this post, especially since I cannot do anything about my present situation but to blog about it and vent out my frustration.

Looking good and looking well maybe thought of as the same thing, but the funny thing about rhetoric is that words are not always used by their real meaning. Looking good refers to our outward appearance whereas looking well refers to ones' health.  Figuratively speaking looking good in my case refers to the same thing as looking well. In this post, "I look Good" refers not to my self-esteem or about how "great" I look but rather to the fact that after a few years now, my health or rather how I feel, and my appearance happen to be two different things, and although I may look okay, I am the opposite of being that.

If you have read my past blogs, then you know the deal. If you haven't then let me tell you, in a nutshell, the predicament I have found myself in for the past two and a half years. A while back ago, as soon as my first daughter started school, I decided to go back to school and receive my education. The last year of my four year degree, during my student teaching, I began to feel like an entirely different person.

Although I had been experiencing some mild dizziness ever so often sometime before, I never considered myself ill because the dizziness came sporadically such as being in certain heights or positions and only at certain periods of the month. When I began my student teaching, my dizziness had evolved to a new level, and it commenced to occur every other day from out of nowhere followed by a stab in the temple, fatigue, and a stiff neck. Soon it was not just at certain heights or certain positions, but it was more often. Like clockwork, every Sunday I would be unable to move my heavy limbs, get up out of bed and when finally able to get up felt tired, stiff, and dizzy.

After graduation, I began to experience some tingling throughout the body that kept me from getting up from bed or from anywhere that I was sitting. When I was not experiencing dizziness, or tingling everywhere, and anywhere, my brain was on fire. Soon I found myself afraid to move a muscle because of the tingling, dizziness, and fatigue. My limbs felt as though they were weights. I was pushing myself all the time to get around or do anything. I sometimes was stuck sitting down in one place for a while unable to move an inch of my body, not even my head.

Because I was one of the many people who did not have insurance, I began to consider alternative medicine, essential oils. Using the essential oils helped the headaches and the pain in the back of my neck. When those were not enough, I got on insurance through the health market, also known as Obamacare. I went to the nearest doctor and after the second visit told that she did not know what to tell me and advised that I work out without knowing that I had to stop working out because of the pain and fatigue. Discouraged by the doctor, whose name I shall not reveal, I decided to venture elsewhere, to a nurse practitioner who I had worked for before. Listening to my pleas rather her own, she sent me to a neurologist who prescribed me some anxiety medicine which helped with the headaches but not the tingling or numbing of the face that accompanied the tingling ever so often. All the while I am not looking the part.

All this stuff is going on inside of me and people begin to say that it is in my head and for a while start to believe it myself. I consider the possibility of this and because I look healthy decide to make the decision to stop worrying about the things my body was doing and stopped going to doctors and just try to live life without thinking about it. Instead of comparing my symptoms with other people too apt to tell of their illnesses or symptoms or getting on WebMD to check under what diagnosis my symptoms fall, I went about my daily tasks as any other healthy looking woman. At times I felt strong, and at other times I did not. I had never felt so out of wack. I was happy that I could pass off as someone that had nothing wrong, but at the same time, I dreaded it because I wanted -still do- to act like everyone else and do what everyone else was doing. I want to be the woman that I look like healthy, energetic, and active, not unlike the woman I was feeling. I had become afraid of being called a fraud or of trying to seek attention or being thought of as lazy because I am neither one of those things.

Unlike cancer or other forms of illnesses, mine is not one that you could tell it by my appearance unless you knew me. My father could tell the difference, but other than my sisters and parents, not even my husband felt like there was anything the matter with me. He believed what he saw and what he saw was a healthy woman who looked well enough to care for him and their family without noting the exhaustion in my eyes, the heavy limbs I could not lift, nor the dizziness and tingling feeling that passed through my body. I looked healthy, and to him and many others, I was fine. Soon I chose which events to attend or not to attend. I could not possibly do everything I wanted to do or go to all the places I wanted to be.

So I skip events, especially when I am not feeling well, events that for the most part require my vitality and my strength because I do not want to feel like I am falling over when I am not or feeling the discomfort of the tingling and the pain that comes along with it. The battle is still going on. This Thanksgiving was unbearable because when I woke up, I was stiff from my neck down to my legs. I am thankful that I can move unlike a year and a half ago when I could barely lift my legs up the stairs of my in-law's home. My head was on fire, I was tingling in every other place from time to time and my legs and face kept going numb whenever they wanted.

Although I was there, all I wanted to do was be in bed and not move, regardless of my condition. I headed off to my in-laws' for lunch and to my sister's for dinner. The holidays are busy for our family, and I always enjoy having an American lunch at my in-laws home and Mexican dinner with my parents and my sisters for Thanksgiving. When you are unable to move around without the feeling of falling or feeling the room spin it becomes hard to enjoy your family the way you want even when you look alright and healthy. In short, I may look healthy and as if there is nothing wrong, but my body tells me differently and the only way to make it better is to lie down in bed.