Recognized and Valued BECAUSE of One of my Worst Moments

 As I walked out the door I heard, "Wait!! I think I know you and I feel like it's significant!" She grabbed the door and I recognized her too but did not know why. We exchanged names but neither of us recognized the other. She tried again, "If it helps I teach nursing at the local college and have been a nurse for years."

"Ooooohhhhhh," I sighed, "If you worked about 15 ish years ago I practically lived at the hospital."

"Really? It must be that...but I feel like..."

And suddenly a memory came to me and I asked, "Wait. You wouldn't happen to be the nurse that held me?" And she finished my sentence, "In the hallway on the floor?" 

Before I knew what was happening she started crying and I was swept up into her arms, "You changed my nursing career! You impacted my life so fully! You left me a note and flowers stating how important that moment was to you. For years I thought of you and have used you as an example of how to follow your heart in nursing. I wasn't sure if I was crossing a line..but I felt so strongly that you needed me but I was unsure even after...and then the next day your flowers and note came to the anonymous nurse who held you...and I cried."

I was still being held by her through this whole dialogue as she was occasionally swiping her tears...to the point that I was tear filled from her expression. I have a terrible memory so it surprised me that I even thought to mention it. It has been so bad lately that I have simply given up on trying to salvage memories and instead I have prayed, "Please in the moment help me to remember what is important to other people or what is significant to share from things I should know." I'm so grateful this moment (however humiliating it was to me at the time) came to me.

"Thank you for following your heart," I sincerely stated, "I thought I was dying that night. I was so depleted from years upon years of being on IV and pain meds through horrible attacks in my abdomen and bad rashes and pain. I was constantly at the hospital and most nurses after awhile treated me poorly and attributed it to hysteria or anxiety but I could not make up the pain. The pain triggered the anxiety. Not the other way around. Years later I was diagnosed by a natural health practioneer with long term Lymes Disease (though not acknowledged by public health), Fibromyalgia from my former Doctor, multiple cycle diseases (PCOS, Andenomyosis, Endometriosis, Chronic low ferritin and Anemia) and finally Celiac. That night was my final straw because I was strung out on fentonyal (which I hated as it made me so loopy) and had been puking my guts out to the point of a little bit of blood coming out plus sitting on the toilet. I was so exhausted and desperate that I took my IV with me out into the hallway, slid down the wall and started bawling...and there you were, with your arms around me and I felt like it was an angel. Later I was appalled at my desperate drugged out behavior but you stuck with me. You gave me hope. You also changed my perspective slightly on nurses."

She gave me another hug and then her mother came around the corner, "MOM!! this is the girl! The girl that left me that note that changed my nursing career!" I recognized her mom too and she smiled, "Hi Kmarie (insert real name) I remember you. I worked as a receptionist at the hospital for years."

A part of myself shrunk inside. Of course the previous receptionist remembers me by name! I did not recall hers but she stated it and it was immediately familiar. I almost can't believe that was my life. Most of the time, if my health is brought up with new friends, it almost feels like I am lying. Because even though I struggle with energy and pain...I learned how to mostly manage my conditions to a degree. The pain attacks stopped exactly three years after my last taste of gluten. I still get them lightly if I accidently get glutened  but it is not near the same as that terrible 24-48 hours of a tight rubber band wrapped around my abdomen to the point that I could not even have a sip of water for a full day. It was absolutely hell on earth sometimes. To hear that I impacted someone in one of my worst moments was both validating and jarring.

I was at my worst on that hospital floor. I am a germaphobe by nature so the fact that I was even sitting on the Emergency room floor says something. I also am not naturally a person who likes to pubicly share my pain or be recognized while I am in a state of duress...so that fact that I was out of my room also shows my desperation. I was stinky. I was pale and shaky. I was out of it from the drugs coursing through my veins ( that did nothing to touch the pain by the way but only made time feel both longer and shorter which made everything more confusing.) I was completely vulnerable and weak...and when I arrived at the hospital one of the nurses gave me the "Oh it's you again" look and treated me with cold contempt. 

So for this nurse to say I changed her at that moment??? That truly testifies to me that sometimes when we are at our weakest, God is there to use us regardless. We are still a worthy vessel. We can still impact lives. We can still be given a different type of strength.

In all honesty, this is a tough story to tell. I was embarrassed to even show up with flowers and a card that was addressed "To the nurse on call Thursday night and the one who held me." I felt that the entire staff at the hospital was mocking me almost. I felt foolish but something in my spirit told me I needed to be acknowledge that beauty. I was taught by my Grandma, who lived in and out of the hospital with Colitis and a bowel pouch and then cancer, to treat those who help with extreme gratitude. She taught me to leave flowers for my Pharmacist, Notes for my Doctor, Christmas gifts for those who really helped me get through tough times... It was not until one of my friends was shocked that I did these things that I realized many people do not do this. And then I felt silly again.

I was between 20 and 30 when this event happened. I will be forty this year. I wish I could go back to my younger self and say, "You are legitimate in your pain. You WILL figure some of this out. You will suffer and continue to suffer with depression due to pain and energy on and off through the years. However, you will find supporters. You will find information. You will find some answers and some triggers. And believe it or not, you will not visit a hospital (besides blood tests and breaking your foot) for NINE years! You will avoid them like the plague instead of running to them! And you will find some angels on earth...

I wasn't going to the event where I met this nurse last week. I was not feeling well (again.) With chronic illness I pick my battles. My son specifically asked me to please try to be with my family...so I went. I was making a hasty exit to go lay down when this lady ran to me and held open the door as I was trying to escape. I didn't feel like talking. Yet, I have often found that in my weakest, Spirit shows up. Or that sometimes when I don't feel I have much to give, Spirit is still given. Or that sometimes someone needs me, even when I do not feel like showing up, and if I force myself to BE present, something magical happens.

Invisible Chronic illness is a tricky thing. I don't like to talk about it anymore yet it is still a huge (mostly secret) part of my life. I look like I am in the prime of health most days, besides being extremely pale for the native blood I have, but with a ferritin of two and a blood saturation of 0.13, that is to be expected. I went through a huge phase in my late twenties when I needed to blog about health constantly to work through the diagnosis process. I feel that is legitimate. Just like I feel this phase of rarely speaking about it is legitimate too. But I am grateful for a few lessons from my weakness.

1. If I have hidden things to deal with, it's easier for me to remember that everyone else has secret struggles. When I am dealing with someone I try to recall this fact.

2. In our weakness, Spirit shows up. A verse that has always been of great comfort to me has been, "Blessed are the poor in Spirit, for theirs is the kingdom of heaven...and blessed are those that mourn for they shall be comforted." There are silver linings in struggle too.

3. Sometimes weakness allows another persons strength to shine. Sometimes our weaker moments can also later be turned into a strength.

I am not glamorizing illness. As I stated, I go through depression dealing with it on a regular basis. I find it tough not to compare. It’s hard for me not to wish I was only tired from a busy life or a bad night and not blood tired ( which sleep does not much for). Yet, I also don’t want to be a complainer or known for “ being tired.” It’s a state that I just live with. Some days it beats me, other days I try to befriend my own Being. I’m this fallen world, it is what it is… but I’m still SEEN. 

My family and I love to watch The Chosen series ( free on YouTube or the App) about the life of Jesus and his disciples. Even if one doesn’t subscribe to the faith, I would still recommend it for its historical accuracy, storylines, and beautiful sets and costumes. Anyway, in season three there is a story of the bleeding woman who I’ve  related to since puberty with my extremely heavy cycles. This woman is ostracized from her family in a time where being alone as a woman is dangerous. She is culturally considered “ unclean” due to the laws. She is anemic and exhausted from bleeding for years. As a desperate attempt she touches the hem of Jesus garment as he’s walking through a crowd on his way to visit a dying sick little girl. Jesus has an excuse to be in a hurry. (The little girl dies but he revives her later.) Instead the lady is immediately healed and Jesus stops and asks “Who touched me?” He knew, but he was giving her a chance to be SEEN and for her to use her own voice. No one, especially a man, would deem her worthy to speak to. Then he calls her “daughter.” This is not creepy but significant because her own family would not claim her due to her disease. She was unclaimed and thus, unprotected. By stating this protective title, Jesus was stating in essence “You are seen. You are worthy. You are protected. You are healed.” 

Maybe it’s ok to be seen and recognized and remembered for one of my worst moments?

I get bleary eyed each time I read that story but seeing it on screen ... I wept. I may not be healed in a huge way, but if I’m honest, I have small ways of healing. I have moments to be grateful for. I’m protected. I have loved ones. I’m valued in some of my communities. I have much more than this woman. But what we have in common is that we are SEEN in what we perceive as our wretchedness… when we are heavily bleeding and hurting and so so so tired… and we are still loved. 

May it be so. 

Song Choice  Woman at the Well (which is a different biblical story about a woman being SEEN):

https://www.youtube.com/watch?v=JVfI1b2aK64

Let's Talk About Lyme- Because Usually I Refuse to

*This is a personal post discussing something I do not even really discuss with most close to me. Why am I diving in to the material now? Recently I had a flare up and decided late at night to read up once again, on my denial condition. EVERY SINGLE word applied to me and I knew once again that Lyme is what I have. Sometimes, one needs to vent or write to understand. This is how I FEEL and not necessarily what should be done.*

*I love the light on this photo. It was a mistake. Because I didn't realize the flash was on the mirror it did this neat floaty, gauzy effect giving the illusion that I'm holding light. Which was a little parable in itself. Most of my mistakes or diagnosis can be turned around into some sort of beauty. I have to always remind myself that just because it wasn't intentional does not mean it can not be made intentionally into something good. In this case, I am finding that hard to do...*

A BRIEF INTRODUCTION TO MY DIAGNOSIS AND WHAT CHONIC LYME IS

I have had about a decade of unexplainable pain, symptoms, fatigue and crazy symptoms that seem serious but go away a couple weeks later, along with other more continuous issues. A few years ago I saw several different specialists. Most were Naturopathic, but one of them was a former M.D. who now practiced Naturopathy along with Allopathy. I walked into his office with a print off of my entire last five years of blood work, medical history and issues. It was the first time I had paid any attention to what was called Lyme Disease.

He browsed through my files, looked up and said," I bet you feel like no one has ever figured you out? That all the doctors think that you make it up in your head but why you would make this up is beyond your thinking? Do you often go on antibiotics and end up sicker than when you started them with flu like symptoms and weeks of detox? (Yes) Do you often need time to recover from exercise, sleep depravity, heat, sugar, certain foods, alcohol and stress? More than the average person to the point where you think you are coming down with food poisoning or a very bad flu? (How did you know that?) Does your Anemia stay with you no matter how often you take iron supplements and change your diet? " (Yup) ...His questions got more personal and so accurate I started to sweat. I was worried because he was pegging me, which had never happened before. My gut started churning and I was worried he was going to say something like cancer or that I was officially dying.

Instead he smiled compassionately and said, "This is NOT all in your head. In fact, you follow a very typical and extreme case of undiagnosed, chronic Lyme disease. Unfortunately, the blood test in Canada is not accurate at all and the States blood tests cost half a grand to send away and a lot of times a negative can still mean a positive. What tells us more is your medical history, certain symptoms, other blood markers, and especially your reaction to antibiotics. Antibiotics cause a herx reaction or what is called bacterial die off in Lyme. Those with Lyme disease, no matter what type of antibiotic, will have this manifestation and often feel like they are dying or get very sick with antibiotics of any kind. Also, you have all the symptoms of the three co infections which I would peg by your descriptions as Bartonella, Cat Scratch, and Babesia. The Co infections in your case are causing even more issues than Lyme. Which is why I would say you are a more severe case. You are not crazy- you are run over by bacteria hidden in your organs and wreaking havoc on your body. Unfortunately, the cures for Lyme and Co Infections are only 70 percent effective and they make you sicker. It's about the same as Chemotherapy for a cancer patient. Some people can not handle the treatment thus they live with the Lyme. Eventually this can lead to death in some cases because of an unknowing Herx reaction that increases inflammation similar to Ebola, but without the bleeding, and organs shut down and a sort of sepsis. This is rare but it can happen without knowledge and managing of symptoms. Especially in a medical setting when you are given antibiotics without the support of IV supplementation and careful monitoring. Your choices are limited. You can either choose the antibiotic method. Unfortunately for you, I believe this has been in your system for ten plus years. It's not the same as being bitten by a tick and then being able to easily expend Lyme by a three month antibiotic treatment. Your biology is now completely altered by the bacteria that has lived in your body which is why you get some crazy pain and symptoms when triggered into die off. For you the only options of treatment would be Allopathic. Years of antibiotics that can cause other side affects and you will be in pain and barely functioning for most of those years and it's not a guarantee because even a couple hidden spirochetes in your body can cause a relapse. OR Naturopathic. Which is just as expensive running up about 500 dollars a month and without a knowledgeable practitioner and IV for supplementation you can cause great damage or even death. It will take probably an average between 6 months and 5 years of treatment. For you I would pick the longer amount. The results are the same as the Allopathic route...which means you may come out cured but with lingering issues, or you may have gone through all of that to be almost in the same boat. Most Canadians also have to travel to the States for a few years for this treatment. I know it's a lot of information. Do you have any questions?"

THE WAY I DEALT WITH IT

Did you feel overwhelmed from just reading that?

Of course I had questions, but none came to my mouth at the time because I was trying not to completely fall apart. Thus I decided to travel to another city to see a woman who specialized in Lyme and other Autoimmune Diseases. This time I told her NONE of my symptoms. Instead she hooked me up to a machine and without me saying anything, she ruled out Lupus. She asked if I had been diagnosed with Fibromyalgia and Irritable Bowel. I said Yes. She said that is common in my case and mistaken secondary conditions of another cause. This time I was ready for it. She asked if I had heard of Lyme and the co infections. She mentioned the same co infections the other doctor has asked me about. It was depressing. She charged 600 dollars for each session and all of the supplements for one month exceeded that. Then I took blood work elsewhere and they said all my markers that a Lyme person has are met. We could not afford to do the healing.

I am not the type of person who is community minded and would HATE raising money for myself or my kids. I also have limited time with my kids in our  home. I had already spent a few years needing aid from a woman who helped out in our home and I NEVER wanted to be that dependent again. I love autonomy. Being a person who already has minimal control over what my body does- means that I am unwilling to give it all up on a lower stat chance of healing. I am also extremely sensitive and I would never purposefully choose more pain than what I already have.

I armed myself with research, books on Lyme from the very few professionals who were actually educated on the topic, and began my depressing decline into obscurity. The more I read, the more panicked I became. I almost wished I had some other disease that was more straightforward, that was studied more, and that could possibly be removed from a surgery or something more solid. I spent months in this mode, barely coping because of a stress flare, and feeling out of control.

During this time, a few years back, word spread amongst our circles that I had Lyme Disease. A few people in the Lyme community reached out. I received a phone call from the head office of Lyme Disease awareness in my province. We talked for an hour. She was compassionate, kind and very informative. But after I hung up, I knew that I could not stay in this mode. I was DONE. 

DISCLAIMER: THIS IS NOT MEDICAL ADVICE. This is how I dealt with my issues, probably unhealthily I might add, to enable myself to LIVE and stay out of a depression that basically pushed me towards death. I wouldn't recommend this approach unless you are a personality like mine. Even then it is important to read all literature, get second opinions, and talk to a therapist first before you allow yourself denial.

I decided that, other than when I am in a huge flare and need to be reminded that I have Lyme and a reason for my pain, I will pretend I DO NOT have Lyme. I will not talk about it. I will not read about it unless I need a symptom explained. I will not put it on my medical records because the doctors treat me like I am crazy and ask where I got diagnosed and are cruel, doubtful and skeptical at best. I did not want to be known as a Lymie. I did not want to be part of the sweet community of sufferers- I didn't want to be defined by a disease. I did not want people asking me how I was feeling everyday. I did not want to be a damn medical anomaly.


A LITTLE BIT OF COMPASSION

I am a feeler. I empathize to the point that it is damaging thus I have had to learn boundaries. My struggle with illness over the years has taught me many valuable lessons on what is important in life, what makes a person valuable, and how to BE. I have had to learn compassion for myself. Last year I had a spur of the moment discussion with a stranger who was hanging green ribbons over town for Lyme awareness week. I got out of my car and asked her how she was feeling. Turns out it was her son who had the disease. We talked about the weeks that are hidden in bed, the hours that are almost too painful to bear, and then the 'passing for normal days' that most people see and judge upon. At the end she gave me a big hug. (Those who know me will be surprised at the fact that I actually was a willing participant in a hug with a stranger. Weird. I guess I needed it.) She also gave me seven green ribbons of my own and encouraged me to tie them on my trees. She told me that the more awareness we have, the more doctors will start to see that Lyme IS prevalent in our area and that we DO need more education on it's manifestation, symptoms of chronic or dormant older Lyme and not fresh bites, and treatment options. I realized I was being selfish to not allow anyone else to know I had Lyme, so I hung the ribbons. It took a lot of guts to do that because the last thing I wanted was people asking me why I have green ribbons on my tree.

Disease is stretching. Not only physically but spiritually, emotionally and mentally. In order to have compassion for others, I needed to also extend it to myself. What this looked like for me is different for what it would be for others with the same condition. I decided that I would treat the side effects of Lyme at the very least with my Naturopath and Therapist. This means being on top of stress through therapy and having the little symptoms in my body explained to cause less fear. Naturopathy addresses any nutrient deficiencies or excess (once I had an excess of zinc which was causing a lot of issues) due to the bacteria running the system amok. My body composition is always changing because of the whims of when the bacteria come out to play, so keeping on top of the additional symptoms, help with my functioning levels. I also make sure I am constantly on top of these eleven things:
http://www.tiredoflyme.com/11-things-that-can-make-a-person-with-lyme-disease-feel-worse-besides-treatment.html

The above link is extremely accurate. My husband was astounded at how well it described me. Ten of the Eleven points deeply effect me and can be the difference between days in bed and a few good hours a day. I made the mistake of going for a deep tissue massage once and could not walk for a week other than from my bed to the bathroom. I was so sick. When the full moon comes out I am a mess and I hate showers. I thought these were coincidences...I used to love my showers and could not manage a good day without starting with a fresh shower. Now I avoid them as long as is hygienically possible because I feel so terrible after. There are so many little ways this disease has affected my daily life and frankly, I resent it.

I would also add a twelfth point to that list: Travel. Travel basically triggers sleep, temperature, schedule changes and many other factors that contribute to a Herx. It's sad but true. I can't really travel. Even a few hours away makes me feel very sick and usually takes a week to recover.

A note on exercise; It completely sucks to not be able to work out like I want to. I used to LOVE Yoga and an aerobic program I did. I felt fit and lovely. Years ago, when the symptoms started, exercise was the first correlation I noted between feeling like I was hit with a truck and poisoning the day after. There is a part of me that is vain. I like to be in shape. Not excessively but enough to be in control of movements and stay in the size I am most comfortable in. However, disease has changed my perceptions on that. Sometimes I still struggle with image but then I realize- other than disease I have everything in life I actually want...I am grateful and want to soak up the beauty instead of being a martyr about what I don't have. But that does not mean I don't feel it sometimes. For instance, the other day I was watching a person do yoga and I wanted to do it too...so I told myself to do just a few easy poses, a couple little push ups and five squats as a start. It seemed feasible. At the time I felt fantastic, the next day I thought I may have to visit the hospital. That part of it really really blows. When it is a choice out of enjoyment and then the enjoyment has consequences. I try to walk as much as I can (which isn't a lot) to ease some of my muscle loss. I don't want to be totally incapable of my own body or deteriorate, but sometimes we don't have a choice in how our body declines despite our best efforts. It's a balance. One that is always changing.

Here is part three of a list of symptoms. This is just ONE page of many and I can check off almost all of these at varied times:http://www.lyme-symptoms.com/2Lyme-Symptoms.html  I try to remember that most normal people would feel a little disillusioned, depressed and overwhelmed if they read that list and could relate to most of it. Does it mean I will wallow in my discomfort? No. I realize others have it WAY worse and would trade diseases with me in a heartbeat. But does that fact stop me from my normal process? No! Compassion also means allowing emotion.

Usually I am good at coming around to acceptance and positivity in the midst of dark times. It's just who I am. On occasion, I can get to this point with Lyme but it doesn't last long. Thus, my need to be in basic denial. What is the point of engaging with the subject matter if I can't do much about it? I only treat and manage what I can but do not actually treat the disease itself. Sometimes, if I hear a story of a Lymie or Lyme Awareness on the radio or in the news, I get angry or I start to cry full fledged gulping sobs out of nowhere. Obviously I have not dealt with it properly and need to remind myself of compassion and perspective.

MY TREATMENT (OR LACK THEREOF) PLAN and ANEMIA

Many people with Lyme have Anemia. The one Doctor described it as, "The bacteria attack different systems in different people. The bacteria or spirochetes hide in organs, the lining of the brain, the blood, muscles and tissue. There are many instances like yours in personal accounts of the blood being continually depleted of iron despite no known other cause and proper nutrition in Lyme patients. We have also found that it's a lose lose situation for supplementation because iron actually FEEDS the bacteria and causes them to grow and then the bacteria feed more on the blood. If you start reading the literature from the rare specialists in this area you will see this pattern occasionally. It is only mostly narrative in theory and it is important to rule out other causes, but if you have ruled out all other causes and your iron therapy doesn't help much this is probably the case. Do what works for you. Go on the iron if you are desperate or if it improves a little but if you get a ton of flares and flu symptoms, perhaps take a break so the bacteria lessen, and then try again. Basically you will become a cyclical creature. You will have to consistently be in tune with new things in your body, symptoms, triggers and flares and honour what best manages these things."

Anemia is difficult enough on it's own but it's a condition that seems more straightforward to me. It is one I am willing to speak of with people. Thus, when people ask how I am doing, I talk about the struggles of Anemia instead of Lyme. Though it could be secondary to my condition, it is also a hard health issue to live with all on it's own. See below taken from HERE.

"Q: How difficult is to live with anemia?

A: It’s very tough. One of the things we learned, however, is that the ability of the body to adapt is tremendous. Over time, even people with moderately severe anemia say, “You know, I really don’t feel that bad.” 

Although people are fatigued or can’t do as much as they could before, they slowly adapt their lifestyle. Instead of walking to the grocery store once a week, they may go once a month and buy everything they need because they’re too tired to keep going back. There’s a lot of adaptation that takes place, but anemia can be very debilitating. "

That is my life in a nutshell: Adaptation. It is true that adaptation is an incredible talent of the body and the mind. The last check my Ferritin was at a 5 which is better than my former 2. I go for more blood work this month. It is amazing that I can do what I do with those levels. A few years ago, when my Ferritin was that low I did not cope well. (See Anemia label for more on this topic.) However, now on the majority of my days I can push myself to take little walks, pretend to be normal, and do things I could not do before. Have I been cured? Nope. I just adapted over time to a new normal. I also spend a lot of time in my bed or in my house. For the first time in 3 years I gained fifteen pounds. I feel worse about my body but I have more energy. My husband prefers me this way with energy but I am yet again adjusting to a new body image. I had just gotten used to being smaller and then again a fluctuation happens. I did nothing new to bring on the weight. (See diet label for more information.) It just happened and if anything may be attributed to my insomnia. However, a perk in energy has been welcome.

My life is compromised of management. People who do not deal with disease have no idea what this looks like. Just because I have energy does not mean I am up for more activities. It means that for once, I may have what looks like a normal day. If I am going to give my energy it will be to the ones who have sacrificed for me first. Which is my family, bestie ect. They deserve that extra output at times I can give it. They also deserve for me to manage my stress levels. This includes implementing boundaries, staying away from toxic people, staying away from most extroverted events being an introvert myself, choosing places of meeting that involve comfort and stability, and pampering hard choices with sensory appeal. They also deserve for me to manage my other triggers like heat, cold, diet, sleep, chemicals, attitude, minerals and supplements, and perspective.

At some point every day I have to ask myself, "Who controls your life? What type of life journey do I want and how can I achieve it while honouring my limitations yet still implementing a few challenges?"

A typical day revolves around my home. I try to balance achievement with being. My kids take a lot of the chores I can not handle but I do what I can. We explore, adventure and spark curiosity when my body is able and we relax, inspire and create when my body can not. At the worst of times they find their own activities to do while I lay in bed or try desperately to escape the pain with sleep. But that is only at the worst of times a few times a month.

If you have Lyme I would highly recommend most of these practices. MOST of these tips have contributed to a better well being and have helped me adapt and manage my symptoms: http://www.lyme-symptoms.com/LymeDiseaseInfo/Attitude.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Vitamins.Minerals.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Nutrition.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Hydration.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Enzymes.Probiotics.html

http://www.lyme-symptoms.com/LymeDiseaseInfo/Sleep.html

CONCLUSION

I am unafraid of judgment. Being an Aspie, INFJ and general anomaly in many ways- judgment is something I have been dealing with since toddler hood. I put no stock into opinions of others unless they are educated, compassionate or a nurturing presence in my life. I do not value titles, degrees or any other sort of attainment in a person. I do not believe achievements make a better person. Nor health for that matter. There are horrible people who have diseases and horrible people who are healthy. Many people with educational titles lack character. There is a difference between being informed and educated and being brainwashed or conforming. Although I admire those who approach education with an open mind and dedication. Basically, what I am saying is that judgment is subjective. Even mine. It's contextual and based on so many factors.

But judgment is also a reality that I prefer to shelter my family from simply because it helps with stress levels. And boy! Do people LOVE to judge unexplainable conditions. Un- health is still considered a weakness in our society. We have a lot of Ableist mindsets subconsciously and consciously that contribute to our hidden prejudices. This is partially why I do not often speak about Lyme. Most of MY people are supportive even if they are baffled by the subject matter. Heck, I am baffled and I have had years of personal experience, research and reading to back up my knowledge, so this is understandable. But I have so little extra energy to give. I don't feel like wasting it on people who already have a standard in their head of human experience that they can't jump over. "I no longer have the time for forced friendships and meaningless conversations."- quote. Thus, speaking about Lyme in my particular context, feels generally like a waste of time. Yet, it is a reality of mine. I should honour it from time to time.

Do you have any conditions you refuse to speak of in general? I am not asking a disclosure of secrets but instead am asking to consider the why. It's ok if you still need to keep them close to your heart. Non disclosures are legal for a reason and important. There are so many complicated contexts, belief systems and experience that affect life with disclosure...which is why this post may be eventually taken down. On the flip side, while I firmly believe there are no completely safe places (although there are some rare havens), risks are still important to growth. Education is important through personal narrative. Each story matters no matter how crazy it may seem. In that we contribute to adaptability in the human race, compassion growth, and the journey towards acceptance....even if it may simply be one more step of acceptance within our own selves. It still matters. "you'll find that life is still worthwhile..."*

Post EDIT: A week after writing this post I found the book "Rain on a Distant Roof-CLICK The Story of Lyme Disease In Canada." I could have written almost all of it. It gives educational facts, medical politics, the mystery of Lyme, the failing of Canada's medical tests and doctors, and the personal autobiographical stories. There are a few stories that I would change slightly but otherwise I was astounded someone wrote about pain the way I experience it.

Yes, I have been diagnosed through the years with multiple co conditions...some on my chart and some not. On this blog you will find most of them in the Chronic Illness label. I tend to talk about Anemia / Low Ferritin a lot as it is easier for me to discuss. I also deal with Thyroid nodules, Celiac Disease, Adenomyosis, PCOS, PMDD, Endometriosis and numerous other conditions.

Song Choice: *That's how it goes- Michael Buble (click)

Misty Blue- Dorothy Moore click. Damn you Lyme (changes in lyrics applied to lyme- mine- ha ha what is life without a little twisted humour?) - "Oh it's been such a long time. Looks like I got you off my mind but I can't. Just the thought of you and my whole world turns misty blue. Oh (lymie) just the mention of your name- turns the flicker into the flame...listen to my baby I think of the things (I) used to do and my whole world turns misty blue. Oh baby I should forget you. Heaven knows I've tried. Baby, when I say that I am glad we're through ( which isn't true) deep in my heart I know I've lied. I've lied. hmmmmm. Just the thought of you, my whole world turns misty blue. Oh I can't forget you..."