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.
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.
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…
- Sometimes the elixir doth break her, not fix her.
- Mourning the old me. Well, the young me. Actually, the pre-sick me.
- 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.