My Story

Behind the Smile- My Story.

Many people have facades. Facades can be a means of preservation. A kind of armor that no one can penetrate. A shield that keeps others from knowing too much about you. With this armor on, you can pick and choose what or whom the outside world perceives of you. It can also be lethal.

I dedicated the past year to acting. Acting like this strange, bizarre new world of living with Lyme Disease was standard. Acting like, I’d expected this my whole life, acting like I wasn’t bothered in the slightest that overnight my life as I’d known it, stopped. But still I never went anywhere or did anything without a smile.

When I was eleven, I was diagnosed with Systemic Juvenile Rheumatoid Arthritis. For weeks I’d had, spiking fevers, crippling bilateral joint pain and swelling, and a mysterious rash that covered me head to toe. At that point I’d never been more afraid of anything in my life. My body was attacking itself and I was left with no control, as simply a spectator. I was put on multiple drugs to treat the disease; prednisone, humira, anakinra, voltaren, thalidomide, methotrexate. None of it worked.

I was an eleven year old girl stuck in bed, frozen in a state of sickness. I caught glimpses of normal life through my peers. I knew this wasn’t normal. I knew being this sick for this long was weird and I could only imagine what other people thought. Some said I was faking to get out of school, others were positive I couldn’t have arthritis because only older people were affected. But this had become my normal. It had become standard to take a hot epsom bath at 3 AM, and to keep a microwave in my room so I could heat up hot packs for my joints, or have four icepacks on my body at one time.

My life had become a war against this disease that I was determined to win. My only objective, my only goal was to get better, to stay ahead of the pain and not let it define me. Not let the pain become my life. When pain meds weren’t enough, I tried acupuncture, bath soaks, paraffin wax dips, hot packs, cold packs, homeopathic herbs, crystals, anything to have a life again. Why wasn’t I getting better? Because I didn’t have Systemic Juvenile Rheumatoid Arthritis, I was misdiagnosed. I had Lyme Disease. Which was only getting worse and aggravated by the RA treatment. This mystery disease wrongly labeled RA was in remission for almost nine years, until 2009.

In October of 2009 I came home feeling different, just off. I was always terrified that I’d push myself, that just by staying up late, or going to a party for two hours that I’d be done. What I thought was RA would come back, and I’d only have myself to blame for overexertion. This was a different feeling though, I felt like I had the flu. This overall crummy feeling lasted for 3 months until I finally couldn’t power through anymore, I was bedridden. I woke up on January, 1 2010 and knew that whatever this was, it wasn’t going away quietly, not without a fight. This is when my real battle with Lyme started, the day I was diagnosed.

The month of January was a blur, I was in bed 24/7 only getting up to go to various doctors. I was too tired to sit up. Too weak to venture downstairs. I remember after one week passed, I thought, “Its been seven days now, this couldn’t possibly last much longer. I’ll be better by Monday.” That week turned into months and I wasn’t improving.

Friends came to visit me once or twice, always saying things like,

“But you don’t look sick!” and,

“Well you seem great to me!”

This was the trap I’d created for myself. I never wanted anyone to feel uncomfortable around me. I never wanted anyone to sense how bad I felt, or to honestly know how miserable I was. Because to me it was both embarrassing, and impossible to quit the act. If people came over or called me on the phone, I had to rally, I couldn’t possibly tell them the truth, “Hi, I’m sorry I’d love to talk, but I feel like I’m about to puke and I feel a migraine coming on.”

My exterior was perfect. If you saw me, you wouldn’t think twice. You wouldn’t know I was in too much pain to choose the stairs over the elevator. Or that, for the past two hours I’d been fighting nausea, always staying close to a bathroom. I’d become an actress. And the act was a lie.

I had created an ironic mess.  I know now that you can not assume that everyone you encounter knows your story, your disease, or your extreme pain, solely based on the fact that you live and breath your illness.

I desperately wanted people to believe how horribly sick I was, but for the life of me, I wouldn’t show it. I wasn’t being honest. Only my family knew how miserable I was, and I even hid it from them. I was isolated from the world. Laying in bed, watching old friends finish school, go to parties, and take everything for granted. I had become so appreciative of my healthy days, that I couldn’t afford to take anything for granted, least of all my health.

I am invisibly sick. Lyme is nasty, but you can’t see it. And this is what is most frustrating. I wish I had something more dramatic to show for the hell I’ve been through. I wish I had solid, tangible proof that I’m as sick as I am, that I could hand it to anyone skeptical. I hope and pray that one day Lyme will not be so controversial. That Lyme patients won’t have to fight tooth and nail just to get adequate treatment.

All I can say is, I’ve been in bed for an entire year now. I’ve had echocardiograms, EKGS, 200+ blood tests, X-rays of bones I broke just by carrying a bag, surgeries, I’ve had MRI’s, spinal taps, a PICC line inserted into my vein and threaded to my heart (twice). This year is one I’ll never forget. I learned lessons that I’ll be forever grateful for. I’ve learned how fragile life is. I now appreciate everything I used to have. I’ve learned that despite what I used to think, I am strong. I’ve learned that those who stand by you when no one else will, are the only ones you should keep in your life. And I’ve learned to stop acting. Living with Lyme is like climbing a treacherous mountain. You take the right pills, you follow the right steps you might make an ounce of progress and take the next step in healing. But you’re scared because getting to the top means there’s the risk of falling again.

As the new year is rapidly approaching, my resolution is to quit the acting. I am sick. I won’t always be this way, but this period of my life is tough and I’m over being ashamed. If I can’t be honest about how I feel around people, then I shouldn’t be around them.

I was hiding behind the smile. I wasn’t as happy, and carefree. Behind the smile, I’m at war with a disease. I’m exhausted, I ache, I’m clinging to normalcy in the wake of chronic illness, I feel like sleeping for the next three days, and I no longer want to eat.

The smiling girl was lying, filled with fear and embarrassed. If you believed her, you were wrong.

28 Responses to My Story

  1. zealoustruth says:

    Oh how I can relate!!

  2. Lyme Chick says:

    Hi! I’m glad you can relate, but wish you didn’t have to understand so well! Best of luck in your recovery. Lots of love!

    XOXO

  3. Theresa says:

    Hey! its theresa….just checking out your blog. GREAT writing…have you thought about pursuing that! Im very impressed! x

  4. Patty says:

    I can definately relate to your struggles with Lyme. Funny enough, but my dream was to be an actress on Broaway before Lyme entered my life in my early teens. I began acting at nine, have been in over thirty productions, but oddly I would say that my best performance was “living every day with an invisible disease”. Every day was another time to act; from the moment that I got out of bed to the time when I restlessly went to sleep, waking up periodically through out the night from the pain, but pretending to have a full night sleep and be fresh the next morning. I lived purely on my adrenaline and just ignored the many crippling pains I had throughout the days. When I did finally complain I was often met by resistance or accustations: “Oh, you are such a drama queen” , “Just work through the pain”, or “It’s growing pains, deal with it”. So I did- deal with it I mean and I stopped telling people my problems. Eventually the symptoms became so bad that I went to the doctor yet again. I was having trouble hearing, falling suddenly, losing my memory, having vision troubles, and felt as if a rugburn covered my entire body. They tested me from MS, but when the brain scan was negative told me that it was “All in my head” and sent me to a therapist. I cannot count the number of counselors I have had to see over the years due to my “condition”, pills I have been given and taken with bad side-effects, and times that I have been told “Well if you wanted to be well then you would be”. At 19, I was diagnosed with, as I call it the scarlet letter of diagnosises, “Fibromyalgia”, and then all tests or other possibilities stopped. For the next nine years, I watched helplessly as I lost function of my body. My legs stiffened, I needed to use a walker to get around, developed blood clots, serious food allergies, tremors, as well as many other troubles. The diagnosis for all of my problems was simply “Fibromyalgia” and I was handed an anti-depressant to deal with it. Now, finally, after more than 12 years, I am being diagnosed with Lyme and many co-infections. I can finally let go of all the hatred and blame that I had for myself for “causing myself to be sick” and start to recover. I am not to blame. I am just sick and I really proud of my body and my spirit for enduring all that it has. I agree that Lyme has taught me how to truly appreciate life and really has shown me how incredibly strong I really am.
    I have lost many friendships and dreams because of Lyme and I refuse to let this happen to anyone else. I have also begun to spread awareness about Lyme whenever and wherever I can and I hope that one day it will not be so taboo and controversial and that there will be real awareness about the true dangers of this bacteria and how to prevent it from happening. I have wrote letters to tv stations and other media outlets requesting that they simply talk about Lyme disease, how to treat it, and it’s posssible effects if not treated, and have not heard back from any of them,; it has been a year. I don’t know why there is so much resistance to Lyme Disease and why it is such a huge battle to test and treat. It makes no sense. As Fibromyalgia, a diagnosis which was itself not recognized a few years ago, becomes the leading pain ailment in the US, I wonder just how many of those cases are really untreated Lyme. We seem to have an epidemic with chronic and auto-immune illness and yet Lyme is rarely considered if at all as the cause. I hope and pray for better days.

    In my life thus far, I have encountered numerous people who just simply don’t understand my struggles on a daily basis, and even when I do try to explain my dilemnas or reveal my pain it is not enough. I am still often time met with resitance or denial and left struggling to find the answers and the cures on my own. Even my own father denies that I am sick and refuses to believe that Lyme is the problem: “We didn’t live in the woods”. Lyme Disease is a battle that I am accepting I must fight, but I am glad that there are more soldiers out there fighting it with me. Together we can turn the tides in the system and bring cruical awareness to the public. I wish you all the best in your contiued journey and I hope that one day we can meet each other Lyme free. Till that day, let’s continuegrowing and sharing 😀

    • Laura says:

      Love the way you described the diagnosis of Fibromyalgia as the scarlet letter! I too was ‘branded’ with the dreaded Fibromyalgia, and like you that was all any dr could see me as for 12 years as my body and mind continued to spiral downward. Finally found an LLMD who diagnosed Lyme and co-infections. Been on treatment since Jan 2011 and starting to see some small improvements. Thank you all for sharing your stories it has been a real help to read them and know that we are not alone in our battles!

    • melissa says:

      Awesome post…just another reminder that I’m not alone. Sometimes it feels like no one gets it but I always try to remember Im definitely not alone.

      Sometimes I feel like my friends and family are starting to think Ive gone crazy. I will try to educate them and they just dont seem to care to much or change the subject. I truly want people to be afraid of what this disease will do to a person if left untreated so that maybe I can scare people enough that they will get educated. With the symptoms I had, I would have never guessed Lyme Disease…for so many years, i researched on the web tryins to figure out what was wrong but it seemed I had the symptoms of MANY illnesses.

      When I was about 16, i was diagnosed with Chronic Fatigue Symdrome, Fibromyalgia at 20 and finally Lyme after the birth of my child at age 27. I barely remember what it even feels like to be completely healthy and have energy. I had 7 months of treatment and stopped after becoming skeptical(My gyno scared the crap out of me and told me I shoudl stop the treatment) Everyday is struggle…if I wake up, get to work, remember to pick up my child from daycare and not get fired, its a good day. We all think that no one gets it but (WE) all get it. We are never alone, we just have to keep remembering that 🙂

      Anyway, I love this blog and all of the Lymies who posted comments on it as well! Thanks 🙂

  5. Shanon says:

    I was brought to tears reading your story, because it is so similar to mine! I’m 29 years old and have been dealing with a chronic illness since I was 16 that has been mis-diagnosed several times. I was told I had Lupus, RA, fibromyalgia…the list goes on. Finally, about a month ago I was diagnosed with Lyme. I’m on antibiotics now, they are trying to decide whether to put a port in or not. Very confused as to what to do at this point, so much has happened to me medically in the last 10+ years that I’m exhausted in every way.
    I especially could relate to the “You look great!” comments. I am the same way! I figure, “Why should I make everyone else miserable just because I am?” I don’t think anyone but my family and closest friends really understand how sick I actually am. I try to stay positive, though! Talking to people like you, who truly understand how I feel, definitely makes things better! Thank you for sharing your story!!

  6. john McPherson says:

    Patty, I just read your reply here, it is almost 5 months later. Im so sorry for what you have gone through. Ive had lyme dis for 12 years, but just diagnosed this year. Doing the IV now, but I dont feel much different. My head is like mush, and Im in constant pain. Its a damned sucky illness.

    I wish the best for all of you.

    John

  7. Kim says:

    I was just diagnosed with Lymes. I have felt sick since April. I am only 17. The regular doctors couldn’t find out what was wrong with me, so they wrote it off as anxiety and told me it was all in my head. People cannot imagine the sheer terror and amount of pain that lymes can cause. I went for months knowing something was wrong that no one was taking seriously. I can relate to your pain and frustration. I’m going to wipe out this disease. It wont stand a chance!

  8. Jana says:

    I am being tested tomorrow for Lymes. I have been dealing with Thyroid problems and don’t seem to be getting better from new Thyroid meds. My doctor wants to test for Lymes. I have such pain in my body and want to figure all this out. Here is a good interview I recently heard with Tom Grier that explains alot about Lymes.
    http://zfirelight.blogspot.com/2011/09/09-14-11-lyme-disease-tom-grier.html

  9. Gary Glaser says:

    Lyme Chick, your writing and ability to articulate your feelings is quite a powerful gift. Sadly your story is classic. So many Lyme sufferers have lived a very similar nightmare. The year I spent bedridden without a diagnosis was worse than after. At every MRI, CT scan, blood test and other specialist tests I was sure they were gonna tell me I had inoperable cancer. Yet every test came back fine.

    My family chose to believe the Dr’s before I was properly diagnosed and disowned me thinking that I was faking so I wouldnt have to help care for my Mother. The Lyme community is the best family I ever could have hoped for .In most cases we are the only people that can properly support each other . Thanks for taking the time to create this blog. It is very informative and helpful.

    All blessings and my hope that one day soon you will be on the other side of this nightmare.

  10. I can 100% relate! But you will win this battle as i did!

  11. lymeyogi says:

    That pretty much sums it up. Thank you so much for making this journey feel less lonely.

  12. Tara says:

    Thanks for sharing. Unfortunately I can relate. I didn’t recv the right Lymes diagnose until about two years into it. I was told that I had MS. Thank GOD I went to MS specialist in NYC! They were baffled by my condition, but could not tell me that I had MS. Well after my third Lyme test – which went to Igenix in CA – unlike the first two, I received a positive test. I am recently on disability, something I swore wouldn’t happen to me. The brain fog and fatigue is relentless. I have been on a bunch of atibiotics, did a rocephin port, and now dealing w. a new doctor. I am comfortable w. the doctor and try to remain hopeful. I would love my old self back but that is not going to happen. That’s not to say I give up b/c I won’t. I am going to beat this, it’s just hard to feel that everyday! My doctor is really hopeful and so are my closest peeps so I have to borrow it from them some days. It’s important to read people like your’s story. Unless you have been there, you don’t get it. Keep fighting the good fight!

    • Patty says:

      Keep on keepin on girl. You’ll make it through. Did you see that Lyme movie? I forget the name because I’m Lyme-tarded. Anyways the chick with the bad MS symptomes made a pretty full recovery she looked completely normal at the end!! WOOT!! If she can do it we all can!! 🙂
      Patty

      • Anna says:

        I think the movie you are talking about is called Under Our Skin. I just watched it yesterday. It really hit home!

  13. Patty says:

    This made me cry at work because it is so true and so “right now” in my life. I feel like shit and I have to say it’s getting old at this point after 2 years. It’s been this long mainly because I am an idiot and I can’t remember to take my pills and make it to my appointments on time. My resolution is to start following every single (horrible!!!) rule my doctor gives me. It really sucks.

  14. Jeana says:

    OMG! Patty, I can feel your pain! I went threw a long stretch where I too forgot to take my medications, and missed my Doctor appointments!! I almost lost my Doctor because the clinic said “this patient has missed too many appointments, and we are no longer going to let her be seen in this clinic” Luckily my Doctor went to bat for me and got it all worked out so I could continue seeing her. Thank God for that because I thought I would just die with out my Doc! She has been like a best friend who has sported me 100% of the way. Forgetfulness is part of the disease and it is NOT in ANY WAY YOUR personal fault!! You are NOT an idiot! You are a VERY sick person. Lyme fog can wipe out your memory.. Make you forget things you would NEVER forget if you, where you, instead of a Lyme zombie. For instance, I forgot my daughters play 2 years ago and I was so devastated by the hurt I had caused her I thought I was going to die of a broken heart. I also forgot EVERYONE’S birthdays, I stopped calling everyone in my family because I simply didn’t think to pick up the phone.. I also forgot to eat, pay bills and go to my 2 day a week job!
    I just stayed in bed all day, sleeping… staring at the ceiling and feeling like my body was killing itself, this went on for two years or so, then one day I felt a slight improvement(very slight) but still it was better than nothing! after that I was having slight improvements every few months. With the occasional normal set backs that we all seem to have, where you take 1 step forward and 2 steps back. Although I am still in a lot of pain and am not 100% better, I have made HUGE improvements in the last year! I am almost fully back to my daily activity’s and have learned ways to help with the residual memory loss. I have spent the last 3 years battling this crap, and I know everyone will relate to this; I don’t even have the time or space to begin fully explaining the details of what the last 3 years have been like. One thing I have learned is that it makes things so much worse to blame yourself for things that are caused by having Lyme disease! You absolutely have to remember that you are sick and you are allowed to make mistakes and if others cant understand that then they are not the people you should have in your life anyway.
    ~feel better soon~

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  18. Pearl says:

    I was finally diagnosed with neurologic Lyme and Bartonella in December, 2011 after 16 momths of decline, 2 ER visits, and a 3-day hospitalization for severe abdominal pain. After 12 doctors failed to recognize Lyme, I paid out of pocket to be tested at IGeneX and to see an LLMD where I am now being treated. I hate feeling so sick and I really want my life back, so I’ve asked for aggressive treatment. After a six weeks of oral antibiotics, I am now on Bicillin LA shots. Apparently the shots are a workable alternative to an IV for some people. I’m hoping that the shots will do it for me, but I’ll switch to an IV if necessary. From all of my research, if one has had Lyme more than 4 months or so, it will require IV abx or IM shots to cure. DIE, bugs, DIE!!

    • Renee says:

      Hi Pearl, I see on here you were doing IM Bicillin in January. Please tell me this helped you? I just started them a week ago, will do 3x week, along with po Biaxin. This is after 6 months of oral antibiotics/antivirals. I’m praying this is what works for me. A pt. in my Dr’s office had great results with it and gave me hope, as we all need to keep us going. I hope you are doing well or better than you were originally! Please share any feedback/ results you have had. Take care!

  19. Pearl says:

    Thanks, Lymechick, for your blog and your efforts to encourage others. It aleays breaks my heart to hear stories like yours, of suffering from both Lyme (& coinfections) and the medical incompetence that still exists today regarding Lyme.

  20. Moringa Mom says:

    You ladies are remarkable! I was just reading an article the other day about those suffering from Lyme disease and other related illnesses. Though I cannot personally sympathize with you, I feel honored that you would share this burden with some of us so that we might lift you up in prayer! It has always been my desire to enter the medical field, but thus far in my life, God has placed other things in my path that appeared to lead me further and further away from that goal. It was only recently that I discovered just how close I really am! I will soon be taking classes in nutrition and, though it isn’t brain surgery or nuclear medicine, it will greatly compliment my new home business. I’m sure each of you has read about all the medicines and treatments available to you and are probably at your wit’s end with options, opinions, and suggestions. But I wonder if you might have patience for one more. I have done a great deal of research on an herb called Moringa Oleifera. Nicknamed “the miracle tree”, this herb has helped to improve the health of so many dealing with chronic disease and illness. It is 100% natural. I recently posted an article about Moringa’s effects on Lyme disease on my Facebook group page: Erin Neal- ZIJA Independent Consultant. My website is also included in this post. Please don’t take this as a sales pitch, but as one mom concerned for many other mothers and single women faced with, not only, physical, but also, mental and emotional burdens. Don’t hide, ladies. You are loved and admired.

  21. moringamom7 says:

    You ladies are absolutely remarkable! I just recently read an article about how Lyme disease effects so many and yet most of us are completely ignorant of it. As I read through the various posts, I am made aware of the numerous other illnesses and diseases that plague beautiful women. One of my friends shared a link to your blog, Lyme Chick, on her Facebook page today and now I am completely convinced that it was not by accident. Though I cannot sympathize directly with any of you, I am honored that you would share your stories so that some like myself might be made aware and share in your burden by lifting you up in prayer. I know that many of you have been exposed to and endured many grueling and uncomfortable treatments and are probably on a million different types of medication for directly and indirectly related side effects. You have probably been given more advise, suggestions, and opinions than could have ever wanted. But, I wonder if you might allow me to share something of my own? I just registered today with WordPress for my own blog, somewhat related to my home business. I am an independent consultant for a company called Zija International. They specialize in herbal products completely derived from the Moringa Oleifera tree. Perhaps in your own studies you have across this tree. Moringa has truly miraculous properties that makes it ideal for improving the health of those with compromised systems. I would encourage each of you to do your research and make Moringa part of your daily diet. I regularly post various articles, videos, and blog links on my Facebook group page: “Erin Neal- ZIJA Independent Consultant”. Feel free to add yourself, family, and friends for access to any of the information. You will find product information et cetera on the page as well, but most importantly I want people to be educated. My business is my ministry, and helping people improve their quality of health pays much larger dividends. Don’t hide, ladies. You are loved and admired.

  22. Anna says:

    There are no words right now for how much I appreciate everything you are doing. I have had Lyme for 15 years and I can not tell you how alone I feel. No one understands, not really. My mother has been by my side the whole time but she can’t relate to it. I watched Under Our Skin yesterday and it felt like someone was reading my story. I didn’t realize how much I have been surpressing my feelings. I want so badly to just give up. I am tired of fighting and of feeling alone. But as much as I want to just toss in the towel I know I can’t. I want to start a support group in Columbus, OH and try to raise awareness. I understand your battle all too well, thank you for being such a positive influence! I really needed a positive message at this time, I have hit one of the low, depressed points that I am sure we all know too well.

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