Monday, August 1, 2016

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.*

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 way sicker than how you start. 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. 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.

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.

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
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.

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..."




4 comments:

Anonymous said...

Interesting - thanks for being vulnerable - your processing has helped me a lot with my own processing. I don’t have all the symptoms, and it is not as severe as many, so I can’t be sure - but certainly I do notice the triggers do affect me and enough of the symptoms exist that I do wonder. And knowing what I can do to be proactive without the full-on treatment, is still doing something and still a treatment of sorts. I think you have managed really well - not that my opinion matters - as judgement and opinion of others at the end of the day, just can’t matter - even if it does get to us at times!

Kmarie A. said...

Dear Anonymous:
Your welcome. Not my favourite post to write but must have been on my mind as it only took less than twenty minutes to write...even tho its lengthy...LOL. I would highly suggest doing bloodtests though not necessarily from Lyme but to rule out other diseases that have the same symptoms...especially autoimmune...as most of the symptoms overlap. I would NOT recommend assuming anything with your health- it took a long journey of ruling things out before i even got to the specialists who talked about Lyme. So just a precaution. However, being proactive regardless is very good.
Yup- too true:)
Wishing you perspective, help and health.

Ashe said...

Lots of husbands like meaty wives. Just try to resist the urge to swat him when he pinches your backside. ;)

Judging from the warnings against temperature and deep tissue massage, I'd say these bacteria thrive on heat and motion. I guess kinda like all bacteria... Would taking a lukewarm bath instead of a shower be a good idea? Maybe even something like a sponge bath or sink bath so you don't have to risk a drastic temperature change. (Tub baths freeze my butt off, no matter how hot the water is.) And if you are sensitive to chlorine and other gunk in water, would a whole house filter on the water line coming in be a good idea, if it isn't something y'all have done already?

I don't consider it denial on your part to not go through with those chemo-equivalent treatments. "Is quantity of life more important than quality of life?" is a tough question, but I believe if a person answers that based on what's important to them, they made the right choice. If treatment will take away too much precious time from things that matter most to them, or would even lessen time available for such things despite any extra years it may provide, then just tackling the symptoms probably is the best route for a happy and fulfilling life.

Symptom overlap truly is a fascinating thing. And a great mystery to me why many people still can't sympathize with various symptoms! Really, who HASN'T had a headache or felt exhausted before? They'd have to be fairly pig-headed to not understand some of the more "common" symptoms of various conditions. Most people don't have neuropathy, in example, but many have stepped on unpleasant things like Legos, and that makes for a good lesson in understanding nerve-damage foot pain. :P

I do have one sub-condition I speak more freely of than the thing it's attached to. I'm comfortable with both, but I just don't have the patience to educate ignorant or judgmental people, so it's best if I keep it to myself and go with the "safe" explanation unless I'm feeling particularly rebellious, combative, and defiant. Although my presented problem still gets a good bit of denial and those infuriating "I don't believe that, you're just making excuses" remarks. Oh well. So long as the people who matter believe me, no?

Kmarie A. said...

Lol Oh Ashe- You never fail to surprise me with what you say. :) Love it. Sorry it took so long to get back to you. I was in a horrid place health wise for a week and didn't even pick up my computer.
Yes you are right about that. Yes luke warm baths are far better for me. And every morning I do sponge baths instead or light rinses and not full showers until i have to:) Lol the whole world gets to know my hygiene now:)

Thank you - you are right- it is a tough question! And I agree with you on the individuality we all must face in that choice:)

I love your examples! So true!:)

I agree- normally I don't have the patience for educating judgemental people either. In fact, I stay away from it in general unless of course those people are reading my blog...lol which I highly doubt as it would either be stretching or fodder for their own gossip:) but yes the safe explanations are usually my way too or I misguide by saying half truths and letting them come to their own biased conclusions...lol you hit the nail on the head tho- If I am feeling rebellious or defiant I may change hat patter a little:)

Thanks for your comment and support!