A Whole New Special Kind Of Awful



Disclaimer: This is not a whinefest, not a ploy for a pity party. It’s my way of record keeping since I can’t remember shit anymore, I literally will ask my husband the same question about 30 seconds after I had already asked him for the second time. He’ll look at me like ‘seriously?’. I also hope that if anyone else goes through this that they can know that they are in fact, not crazy, and that yes someone else has gone through this.


The acceleration of this landslide of awfulness started after my partial hysterectomy in April. I was looking forward to the dragging exhaustion, forgetfulness, pain and overall misery to be surgically removed from my body and be able to get my life back. That didn’t happen. While it was necessary due to Adenomyosis, it in fact seemingly sparked an on slot of symptoms that I had been experiencing on and off for quite a while except now it was amplified three fold.


Dragging, debilitating, life ruining exhaustion. While I had operated on a baseline level of tired since being on the midnight shift for almost three consecutive years as well as having Ehlers Danlos Syndrome, I had been on the same daily routine and knew that if I got at least 6 hours of sleep I’d be good to go. Sometimes I’d have trouble falling asleep so I had a rx for Ambien as needed. Now even with the Ambien I lay awake, completely exhausted, begging for sleep, and will just lay there. If I do sleep I wake up more exhausted than I had been going to bed. Last night my husband woke me up to get ready for work and I told him I didn’t even sleep at all, he told me I’d been asleep since he had gotten home from running errands with the kids 5 hours before. I technically was sleeping but had felt like I’d been awake the whole time. My record for insomnia? 5 days. 5 whole days of wide awake not sleeping.


Extreme hip , neck & lower back pain. I’m not talking about tired bones or I did too much at the gym aching. I’m talking about it feels like my hips are being crushed and I have to drag myself up to bed with my upper body because I can not walk kind of pain.


Brain fog. I feel like my consciousness has just been floating around in a life vest for the past few months, I have extreme difficulty processing whats going on around me, I feel like life is wasting away because I am not experiencing anything, everything is just vanilla.


Memory. Memory has been stolen from me. I have two agenda’s to physically write things in, alarms set in my phone for everyday tasks, multiple notes left everywhere. I feel like pig pen from Charlie Brown , except instead of dirt I’m surrounded by chaos. Which isn’t particularly helpful for the depression and anxiety.


Worsening circulation issues. I had been diagnosed with Reynaud’s secondary to the Ehlers Danlos. Lately it’s been worsening and all conservative issues have failed. My joints also swell and turn red and go back to normal.


Vision. Floaties, fog, blurry, difficulty reading .


Migraines & noise sensitivity, ringing in the ears. When I get migraines I’ll usually end up with numbness or tingling in my face that extends down to my arm.


Lock Jaw. I’ve been told that I clench and grind my teeth by my dentist but now my jaw is in so much pain and I literally have times I can not eat or talk. That’s never happened before.

Hair thinning/loss . My eyebrows started randomly thinning and I have spots of thin hair on my scalp that were never there before.


Chest pain and shortness of breath with out exertion.


I’ve been to a dozen doctors previously since all of the above have occurred on and off since June of 2012 when I had a mystery rash (not bullseye, looks more like Rocky Mountain SF but told I had chicken pox for the 2nd time ….even though they weren’t blistering) and have been put on various medications and tested for various disorders. Nothing really seemed to help and eventually it dissipated. Until a few months ago after my surgery and my body dumped all of this at the same time in higher intensity. Since the mystery rash of June 2012 I have had random ailments that I had not correlated to that, eventually around the time I had a stroke like episode in December of 2012 (diagnosed as a really really bad migraine …. ya don’t say ….) I had mentioned my concern to my PCP about a possible Lyme exposure 6 months prior, and while he didn’t think it was the case he ordered whatever common lab test , which came back negative. Now I’m not trying to self diagnose, become a hypochondriac or be one of “those” people, but I want my life back damnit. My kids need their mom and my husband needs his wife . There’s so much information and mis information out there about Lyme that you can get overwhelmed. Sometimes I question my own sanity. But I know something is wrong, very very wrong. I’ve never asked for help or complained about anything in my life. I started to ask my husband for help and told him I was scared. I’ve never done that in the almost 11 years we’ve been together. It’s my understanding that major surgery or trauma can trigger a latent Lyme infection, and having a hysterectomy (which I got IV antibiotics) qualifies as one. I could be wrong, but right now it’s the only thing that makes sense. My appointment with the infectious disease (sounds heinous eh?) doctor is on the 30th. Hopefully he will be able to shed some light on this. After that I skip off to the neurologist.


~ Birdie


Ps it’s also worth mentioning that I live on Cape Cod , one of the epi centers for Lymes . On my street alone there are half a dozen cases of Lymes disease , my mother has gotten in three times in the 25 years we’ve been here. This is mitigating factor to my concern.


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