Warning whiny rant ahead...

I am crawling out of my skin. I relapsed with my lyme disease after getting 90% of the way there. I racked up $12,000 in medical bills for myself and my son during the last round. I was out on disability/voluntary lay-off for 10 months last year while I treated aggressively, including 2 inch needles to inject penicillin in the Patooty for six months. I finally got 90% better and got a new job. The first 3 months were decent, but I wasn't as vigilant about meds, resting etc. and I started slipping back. After 5 months of working full-time, I paid off $4000 in credit card debt from the medical bills.

And then I crashed. Hard. I started forgetting who coworkers were, couldn't remember what I had just worked on, was just exhausted and burnt. I was trying really hard and not doing so well at work, probably because of the cognitive dysfunction from my neurological issues- can't concentrate, really crappy short term memory- like asking the same questions 2-3 times within an hour and not remembering that I'd already asked them and what the answers were. Thankfully they let me go on disability and work part-time from home, but I can barely keep up with that.

I am so fucking burnt out on this shit. I got a PICC line put in and am doing IV antibiotics at home, which is ridiculous to begin with. My house looks like a hospital, IV pole, syringes everywhere, pill bottles. I will be on IV for 6-12 months, which means I can't work full-time, for the next 6-12 months, I just can't keep up with the infusions, dressing changes, blood draws, doctor's appointments etc. The home infusion nurses that come once a week and see a lot of lyme patients tell me that chronic lymies get better, but they don't tend to stay better. My insurance has denied my IV antibiotics, saying that it's experimental past 28 days. The IV meds cost anywhere from $800-$7000 per month. I have lesions in my brain, I twitch like I have Parkinson's to the point of not being able to walk or talk at times. I don't give a crap if it's experimental or not. Without treatment I will deteriorate. I have met too many inadequately treated lyme folks with quasi-dementia, in wheelchairs, deaf, twitching and in constant pain. I don't have a choice. I have to treat it, covered or not. The Attorney General's office is helping me fight some, but the odds are not good that I'll win, so it's kind of a waste of time. The twitch comes and goes and is somewhat hard to predict. I used to get stranded driving before I figured out some supplements and foods that calm it down somewhat. It comes and goes, some days I don't twitch, other days it's 2-8 hours of twitching. My neurologist thinks I'm faking. My lyme doc knows it's all too real. It's incredibly frustrating. I got 90% better last year with only minor twitch every few days, cognitive stuff cleared up and I couldn't believe how much pain I had been in for years that I thought was normal. I felt awesome. And now with the relapse, I am just so tired of fighting. I'm tired of the 4-7 drugs I take daily to kill this stuff.

My son has lyme and mitochondrial disease as well. He's done incredibly well on treatment over the last year. He went from a psych eval that said he was severely delayed, to reading, he's in kindergarten. His behavior calmed down. Last year his teacher called once a week to tell me he was not well behaved. This year he was student of the month! To get there though, he is on a gluten free, casein free, soy free, corn free, low sugar, low carb diet along with antibiotics for months at a time. He's just come off of his antibiotics and we're switching to herbs to treat it. Herbs are easier on the body and give a more sustainable cure. But, I have to order them on the internet, mix them into a tea, and somehow get a 6 year old to drink this crap. The diet is amazing for his cognitive and behavioral issues, but now he's stopped growing and he's really skinny. I can't get enough food in the kid. He's always hungry, but not absorbing his food. I feed him breakfast, snack, lunch, snack, snack, dinner at 5:30, another dinner at 8pm and snacks in bed, becuase he cries out that he's hungry. Grass-fed beef or organic chicken at most meals. Nuts, fruits, veggies. He eats more than all the other kids at his babysitter's, but it doesn't absorb.

But this is crazy. CRAZY. I have to go to 2-3 grocery stores to shop for him. I can't afford the IV meds, so I'm borrowing money and my doc ordered them from a wholesaler, but they come unmixed. I have to figure out how to mix the powdered meds into saline and inject it into my IV line. The IV line goes up my bicep and into my superior vena cava, the vein right over your heart. If I get any bacteria in the line, it could travel to my heart, cause sepsis, and basically kill me right quick. I've had heart palpitations every 3-20 minutes for the last few weeks. They finally stopped 2 days ago, as I figured out that my Picc line was pushed in a little too far. I begged the nurses to pull it out just a tiny bit and they finally stopped. Lyme can cause your heart to misfire, neccessitating a temporary pacemaker. So was it the Picc line? Lyme messing with my heart? Side effects from the drugs? I was terrified, but there wasn't much to be done about it...so I just lived with it.

I'm trying to clean up my diet, get some excersise, take all my meds and get better. But I am tired, and it is frigging disheartening to think that after the next 11 months, I may be better, $8-10,000 deeper in debt, and then I may have to do this shit all over again. My son is regressing since stopping the antibiotics and his behavior is deteriorating. He can't focus, can't pay attention, can't remember simple directions, throws tantrums, he's 50 pounds and I'm not supposed to lift more than 30 so that the Picc line doesn't pull out or bleed, which could cause infection. It's just too much. each little thing isn't that bad, but the whole thing is just ridiculous. I can't physically keep up with everything. I'm grateful for the job, the borrowed money, the docs willing to treat me, the incredible boyfriend that is doing his damndest to keep me going, but I'm just losing hope of getting rid of this crap and getting back to life.
One of my best friends broke up with me via email. She insinuated that I’m making this shit up and not trying to get better. Honestly, it was hard for her to watch me suffer and she just couldn’t deal, so she somehow thought that I was making this up, blamed me for this crap and unceremoniously dumped me. I’m still reeling and it was two months ago. This shit is so unfathomably fucking unreal, that it’s just easier to believe I’m making it up. I’m heartbroken, sick, broke, exhausted and I don’t see the light at the end of the tunnel right now. I’m not fun to be around at this point because I’m just so beat up and exhausted. I try my best to lie when people ask how I am. I try to mention random positive stuff. My son learned to swim. My house is coming along, I redid the bathroom and blew the shutoff valve off the pipe into my face…flooding the bathroom and hallway. HILARIOUS, well it is now. At the time I looked like a very angry wet cat and now the bathroom looks fabulous.
Please send me some vibes. Tell me this sucks. Tell me you’ve been seriously down and out and come back out the other side. Lie to me! Tell me it will be okay, it will get better. Somehow we will make it. See it for me, because I can't see it right now and that scares the shit out of me.