When life gives you lyme, make…?

I’ve been in a real funk this month.  There’s a good reason funk starts with f u.

This post will probably put you in a funk too.  It is long.  And whiny.  And depressing.  You’ve been warned.  OK, I’ll add a touch of funny.

zazzle.com
zazzle.com

May is ironically awareness month for both Lyme and Lupus.  The two illnesses I have.  (If you know me, you know I don’t like to call it disease. Sounds too permanent).  During the month there are extra articles on the internet, extra emails in my inbox and lime green and purple ribbons which all force me to think about the blasted sicknesses way too much.  Sometimes I want to shout “I am already well aware.  I don’t need a special month to remind me!”  I know, I know.  The purpose is to educate others, which is a very good thing.  But it still makes me grumpy.

This year has put me in the funkiest funk because it was almost exactly 10 years ago that I started my journey to try to figure out what was wrong with me.  TEN YEARS.  A decade.

And I was sick long before that but 10 years ago was when I reached the point that I KNEW something was wrong and I KNEW I had to figure out what it was.

I’ve always been susceptible to infections.  I was a regular strep throat patient during my childhood, with an occasional ear or sinus infection thrown in for good measure.  Once I grew up, my strep did also.  The more responsibility (i.e. stress) I had, the worse my infections got.

First job after college…out sick 3 days my first week.

Just married…Jim at a couples resort alone while I got multiple antibiotic shots in the tushy from a scary Jamaican doctor.  At least I think they were antibiotic shots…(that story could be a blog post of its own.)

Over the top birthday party planned…strep plus a ruptured ear drum.

Baby Jake in the hospital overnight for a breathing treatment gone wrong (could be another blog post)…me in the hospital the next week with a tonsilar abscess.

These examples continued to get more and more frequent until the slightest little stress would require about a month of multiple antibiotics before I was better.  I literally was sick more than I was not (yes, I DO mean literally).  But once I finally kicked it, I felt great.  Only until I got sick again, but those weeks of health in between were dang good.

I finally had a tonsillectomy 12 years ago because I think the doctors got tired of saying to me, “worst case of strep I’ve seen” almost every single month.  But I shocked them all shortly after surgery by getting a tonsilar abscess, without tonsils.  Medical mystery is not a fun term to hear when you are ill.

The surgery did help though because I was getting strep less than half as much.  So I was on antibiotics much less often as well.  That will be important down the road.

While I was technically sick less, I started feeling less healthy between bouts.  Weird symptoms were cropping up but I’d brush them off as “nothing” and then before too long, I’d end up with strep and the weird symptoms would go away.  For a while.

Fast forward to the next year when I was pregnant with Eric.  The one time – well, 4 times I guess – in my life I have never had strep is during pregnancy(ies).  The hormones must jump start my immune system or something. After Jimmy and Jake’s delivery, the immune battery died and the strep monster returned.  After Eric was born it was different though.  I went months without strep.  Over a year without antibiotics during and after his birth.

The weird symptoms returned.  With a vengeance.  I won’t list them all, but I did come up with “pet names” for some symptoms.  SFTD.  No, not STD.  Stupid Fat Tongue Disorder caused me to forget words, say the wrong word, say the right words in the wrong order and/or slur whatever words made it out of my mouth.  It was aslway a toin coss to trip to guess what shlwould come ouf ot my…ummmm…what is the brplace with lips…ummm…eyes?…making sense no.   I outwardly joked because some of the things I said really were as ridiculous as that last sentence, but inside I was very worried about what was happening to me.  I reached a point before diagnosis that I avoided conversations if at all possible because it was just too humiliating when SFTD would unpredictably come and go.

Many memories of that time are fuzzy, but I clearly remember one day in May ten years ago.  Eric was 6 months old, Jake was in preschool and Jimmy was in 1st grade.  Getting Jimmy and Jake ready and dropped off at school was all it took for me to “hit the wall.”  That was my name for the immense and sudden fatigue.  I seemed to slam into the wall extra hard that day.  My only saving grace was the morning nap.  I plopped on the couch to recharge until preschool pickup time.

Eric had different plans.  He decided he didn’t like his morning nap anymore.  As soon as I plopped, the baby monitor lit up.  He was crying.  Then I was crying.  I was so tired and felt so sick, I could not move off the couch.  He cried harder.  I cried harder.  I physically couldn’t go get my baby out of his crib.  I finally did.  Somehow.  And I limped through the rest of the day.  Somehow.

That was the day I finally realized something was really wrong and I needed to figure out what.  What I didn’t know at the time was that I would have 3 1/2 more years of not only hitting walls of fatigue, but also walls of ignorance and insolence while trying to get doctors to listen to me.

When a 30something year old asks why she has heart palpitations, she is ridiculed.

When a Mom of a 6 month old asks why she is horribly fatigued and foggy, she is told she has PPD.

When a Mom of 3 tries to explain that her cognitive function is severely impaired, she is flippantly told it is Mom brain.

When a Mom of school age children complains of swollen lymph nodes, unexplained fevers, chills and body aches, she is told that it’s just kids bringing home germs from school.

When a woman has night sweats, she is told she may be going through early menopause.  Even though she is in her 30s.

When a patient is dizzy, she is told to take iron supplements even though she isn’t anemic.

When a patient complains of numbness and weakness, she is told it is all in her head.

When a patient reports a variety of symptoms that come and go, she is called a hypochondriac.

Not wanting to make waves, I took the borderline mockery from some of the doctors and continued to suffer in silence.  I still was knocked out by the occasional strep, after which I would temporarily feel well. At the end of the year I found out I was pregnant with Greg and, once again, the symptoms were mysteriously relieved.

However, as soon as Greg was born my body went into a tizzy.  In the hospital I felt very ill and alternated between sweats and chills.  I was so out of it.  To this day I am shocked no one noticed the state I was in.  But somehow they didn’t.  I guess I really AM good at hiding symptoms.

When I was discharged, my brain was short circuiting.  I would go through periods where I couldn’t remember anything.  I’m talking ANYTHING.  I forgot Greg’s name.  Several times.  Can you imagine the horror of saying to yourself, “What is my brand new baby’s name???? Wait, I remember it starts with a G.  G…Ga…Ge…Gi… Crap.”  Soon my brain went back to its normal level of forgetfulness where I at least knew family member names.

During the next year, my Mom had a stroke and then surgery for lung cancer.  I spent many, many days driving out to visit and care for her.  *I should add here that I misspoke when I said pregnancy is the only time I don’t get sick.  I also don’t get sick DURING a stressful crisis.  I guess like the hormones during pregnancy, adrenaline kicks in during crisis.  After stress=sick as a dog.  During stress=healthy as a horse.*  Somehow I hung in there until the day Mom went for her post-surgical checkup and got the green light that she could resume normal activities.

My body heard that my help was no longer required and it crashed.  And burned.  And smoldered.  It wasn’t my normal post-stress case of strep.  As bad as my strep could get, this was much, much worse.  I called my ENT and told him I felt like I had meningitis.  After he chuckled,  he informed me he was sure it wasn’t meningitis.  Crazy as it sounded, I was convinced I had meningitis and told him so.  All he heard was “crazy.”  I was so ill I don’t remember much of the next two weeks, but I do remember at one point thinking “this is it.  I’m going to die.” Finally, my buddy Strep made his appearance.  They put me on a super-duper antibiotic and my discredited meningitis also went away.

I needed to make more than waves.  I needed a full blown tsunami.  I started pushing doctors for answers.  And “medical mystery” wasn’t going to cut it.  After lots of puzzled looks, head scratching and referrals to doctor after doctor, an infectious disease doctor tested me for lyme.  It came back positive.  And I had probably had it for an extremely long time.

Remember I told you the decrease in strep frequency would eventually come in to play.  Well, it finally has.  By periodically taking antibiotics for strep, I was unknowingly keeping the lyme bacteria under control.  Since the medicine wasn’t strong enough to eradicate it, it was always there.  Hiding.  Waiting.  Plotting my downfall.  OK, maybe that’s a little dramatic.  But the bacteria would get stronger and the symptoms would get more prominent each time I was off antibiotics for an extended period or endured a stressful situation.

Lyme has different stages, each one progressively worse and harder to treat.  Most likely I went up a stage (or got knocked down a notch heath-wise) after Eric was born and then moved to the late stage after Greg was born.  The stress of my Mom being ill gave the lyme enough ammo for an all out attack.  And the crazy theory of meningitis?  It WAS meningitis.  Lyme meningitis.  Chuckle THIS, doc.

I’d love to wave the test results in front of each and every doctor who dismissed me.  And see if any would apologize for treating me like an idiot.  Maybe if they had listened to me sooner, I wouldn’t have reached the worst stage of lyme.  The stage where I can and DID get meningitis.  The stage that is hard to get rid of.

The stage I’m still fighting 10 years later.

Ten years that feel like they have aged me at least 20.  A decade where I’ve decayed.

When life gives you lyme, what should you make?  Make…the doctors listen to you.  Really listen.

And then…Diet Coke with Lime

You put the lyme in the Coke you nut and drink them both together.

You put the lyme in the Coke you nut and then you feel better.

I’ve always suspected Diet Coke has a medicinal purpose.  If it can eat rust off metal it should be able to handle a little tick bacteria, right?

Hmmm, I guess I just inadvertently participated in Lyme Awareness month. I should probably include some information that is actually useful.  So here goes…

Ticks suck ass!  In more ways than one.  Really, they can get anywhere.  So check your tush for ticks. 

Ticks are the pits.  And they like sweaty pits, so check there too. 

Ticks make you have a 365 day period every year.  No, not really.  But they are the size of the period at the end of this sentence.

_______________________________

Possible future rants…

  1. Sometimes the elixir doth break her, not fix her.
  2. Mourning the old me.  Well, the young me.  Actually, the pre-sick me.
  3. How Lyme did and did not give me Lupus.

Topics for another post?  Perhaps.  First I will wait and see how many followers this one loses me.  😉

The funny will be right back after this commercial break.

24 thoughts on “When life gives you lyme, make…?”

    1. You’re an awesome follower! 🙂 I’ve been a bad blog follower this month. I need to get caught up on reading posts. I’m trying to get all the blogs I follow on Bloglovin. I think that will make it easier for me to keep up on everyone’s blogs…even when I’m in a funk. 😉

  1. Good grief, woman. You are a true hero — I would have given up long ago. Just want you to know I think you are one kick-ass woman!

  2. Thanks for your honesty. You are a courageous woman, and I think your message is so important: trust your instincts. Fight for yourself. Oh, and I love the f u in funk. Awesome.

  3. Angela you have handled this shitty “disease” with humor and grace and I really admire you for that. You deserve to feel good and one day you will. Keep it up!

  4. Ouch! I wouldn’t wish either of those diseases on my worst enemy. You are handling it much better than I would, that’s for sure! I guess, growing up in Alaska (a tick and flea free zone), I was really lucky not to have crossed paths with those little b@stards. I’m a paranoid freak with insects here in Arizona. The poor kid isn’t allowed to touch any kind of plant outside. Especially after hubby got a tick in Florida. Bleck!

    1. Thanks Terrye~ I’m not so sure how well I’m handling it lately (just ask my family!). I usually try to be thankful that my symptoms *have* improved, but sometimes it just pisses me off, ya’ know?? 😛

  5. Good heavens, why do doctors dismiss us so easily? That is a long time of unnecessary suffering. It happens all the time, though. I’m sitting in the limbo of “we think it’s early Lupus” according to the hematologist, while the rheumatologist, before even examining me, said I had fibromyalgia. Who knows. I finally got sick of them all and just stopped going. I’ll make an appointment when I have some time. Ha! When I have time…
    Don’t worry, I’ll still follow you. 🙂

    1. I remember you saying you’ve been having issues as well. Sorry you are getting the run around. I only go to doctors now when I absolutely have to. Unless I NEED an antibiotic, I have reached the point where I feel like I’m about the same whether I take all the medicine or not. So I’ve been choosing not! I’ve been bad about commenting lately but still love reading your posts!

  6. You’re such a strong fighter, Angela. And I love how your humor shines through the difficulties…Will keep you in my prayers! Keep writing! You’re so gifted.

    1. You are very kind Terry! Don’t feel so strong most days, but I do what I can! I think my writing will continue to come and go with my energy level/fogginess level, but I do enjoy writing when I am able! It makes my day to hear that others enjoy it as well. 🙂

  7. Wow – What an unbelievable story! I’m so sorry you have been through so much. I am a firm believer that we always know our bodies best. It’s just so hard to advocate for yourself when you are going through things as difficult as what you have been through. I can’t imagine.

    A couple of our family members found ticks on themselves last weekend after we were all together in Vermont, and they were unsure about getting antibiotics just in case… I’m going to share your story with them.

    I’m visiting from the Honest Voices group and will be sharing!

    1. Thanks for stopping by! I love Honest Voices! Thanks for the kind words, they are much appreciated. Sorry your family members found ticks on them. Definitely tell them to watch for any fevers or weird symptoms if they can’t find a doctor to give them precautionary antibiotics.

      Look forward to getting to know you better through the group!

  8. Ugh. I’m so sorry to hear that your symptoms were poo-poo’ed until they progressively got worse. My friend was just diagnosed with Lupus and she’s been sharing the ins and outs–it ain’t easy. Keep writing, lady–free therapy and support!

    1. Thanks Stephanie! Sorry about your friend. I hope she is able to keep her symptoms under control. Writing is definitely good therapy and I LOVE the support of the blogging community!

  9. So glad you shared your story. As you know we relate a lot to each other. Nothing more frustrating than a mom going in with these symptoms because she can’t handle it anymore and being told its just life with kids.
    On the topic of brain fog… Lilly (4) was in my lap in the wheel chair at my oldest daughters graduation. I panicked as I looked around… Husband (check) 2 sons (check) WHERE IS LILLY?? I start yelling her name as my my boys and husband stop abruptly and turn to look at me. I am still saying where is Lilly and my 10 year old says “in your lap”.
    I then focus in on the princess looking at me from my lap of all places.
    I wanted to cry. I wanted to cry because I found her (the panic and adrenaline is still real even though the threat isn’t), I wanted to cry because I felt stupid, and I wanted to cry because I felt like yet again I have shown just how lost to my illness I can be.
    So many people feel like they get it because they’ve forgotten what they walked into a room for, or maybe even had a similar thing happen, they can’t fathom how it feels to have it happen so often, it takes a toll.
    Adore ya!
    Carrie, the Just Mildly Medicated Gal

  10. Hi. You are an awesome writer and your story is compelling. I hope you find some answers and some healing. I know it sounds hokey, but maybe try some alternative therapies. Your body needs to vibrate at a higher resonance so you can fight off some of this stuff. I tried Reconnective healing and then I learned it. It is a great feeling and it can offer many benefits, especially the Reconnection. Really. You have nothing to lose. Keep writing! And thank you for following.

    1. Thanks for the kind words Mimi! Fortunately my doctor believes in a combination of both traditional and alternative medicine. Right now I’m focusing on the alternative options and have been avoiding antibiotics unless they are absolutely necessary. I would love to hear more about the Reconnective healing if you have a chance to give me more details about it sometime!

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