“The Cavalry ain’t comin”
Somehow, I got a bit codependent, needy, nuts. I thought I was over that shit, but it crept back in unannounced. The isolation of being sick, a single parent, slammed with too much stuff I did not want to do. I got so lonely I talked too openly with people I didn’t know well enough, never stopping to ask do I trust this person? Do I respect this person? I made people uncomfortable with my “classic overshare” as an awesome comedy duo once put it. I was a walking wound. I was so stressed out that it leaked out, I couldn’t contain it. I can’t hate myself for that. My capacity to deal with what was going on got overwhelmed. I couldn’t contain it.
I would’ve blabbed my shit to the mailman, all my troubles, poured em right out on the poor fellow if it would bring relief and sympathy for just a minute. It was too much for me to bear. I got lost. I tried to distract myself with other people’s troubles. I see it now, but I didn’t recognize it at the time, I didn’t allow myself enough quiet time for wisdom to bubble up. I ran around painting a friend’s kitchen, organizing her closets while dishes were piled high in my own sink. My own flat, a half disaster area.

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.

One year plus with an amazing man. Sweet, honest, gorgeous, hard-working, loving, sacrificing. Gorgeous. I have been so sick, and he has seen us through. My son is reading. READING. He is developmentally disabled, missing part of his brain, and he is READING. In part due to the man's unrelenting support. I was so terrified, so ashamed at the courageous path I have taken. I bucked the system, friends, family, mainstream medicine. It worked, it worked wonders, but it was one helluva riky bet. I honestly don't think I could have done it without his unrelenting support.

The gorgeous man in question was most terrified of having a child with special needs, and then he learned...to love. And my boy has thrived under his care.

This gorgeous man has been by my side, listened to me rant and rave, more times than I care to remember. He has been supportive, loving, a shoulder to cry on.

And I broke up with him. It was less something I wanted to do than something I felt compelled to do, had to do. He deserved better. He deserves a woman who is overjoyed to see him when he walks in the door, a woman who loves him unconditionally. I am, most unfortunately not that woman. I love him deeply, and somehow, this is not it, he is not the one.

With him, I feel compressed, fenced in, not myself. I feel like I hold my breath and try to reign myself in, to cut off the corners that don't fit. Cutting off those corners makes me feel claustrophobic, lonelier with him than without.

I wish that things were different, but they are not. I want my heart to follow my head, but that's not how it works.

I want my son to learn from my example, to marry for love, because he couldn't imagine a life without someone. Is that so wrong?

Oh god, how I wish that I could make it work. It would be sweet and simple, and loving...and I can't do it. It's just not there.

And this sweet, sweet man, is in so much pain from my decision. It didn't even feel like a decision, more like a we deserve better and I can't do this, like it was just something I had to do. I am so sorry for causing him so much pain. I just pray (and I ain't one to pray) that he finds a good woman who loves him and that he can become the father he is so meant to be. The mama just ain't going to be me.

I hope to god that I am not scarring my sweet son with my decision. Somehow it will all be okay.

I have work to do. And I need to do it alone right now. I need friends and work, and of course my boy. And at the end of the day, there's just not enough left to go around. I have been shorting myself, but I just can't do it anymore.

Hi all,

I need to go to an autism/lyme medical conference in April to learn about treatments to help my son recover. I am also incredibly broke from paying for our medical treatments while laid off for the last year. If anyone has a couch or floor to crash on near Indian wells CA for four days, I would much appreciate it. It will only be me as I can't afford airfare for my son as well. I am happy to clean your bathroom, rake your leaves, do your laundry, buy you groceries, whatever in exchange for a couch to crash on. I will be at the conference most of the 4 days. Thanks mamas.

My boy was student of the month. Last year I was called in once a week to tell me that my parenting was sub-par, that my boy was not going ot make it in kindergarten if I didn't get him in line behaviorally. Exhausted, sick, almost to tired to care, I pursued the medical side of things and did my best with the day to day behvioral, emotional issues. And I put one foot in front of the other...and lo and behold. His teachers this year tell me nothing but good things. He tries so hard, he's so well-behaved, HE'S SO KIND. The outside world is now recognizing the boy I saw all along.

http://www.youtube.com/watch?v=wigqKfLWjvM

Check out the contest at http://mssinglemama.com/
This year I want to...
Stop settling. I want to only have the best. I want to let go of taking whatever scraps and hand me downs are passed my way, taking whatever job I can get because it's good money and a short commute, wearing clothes that don’t fit me and that I feel disheveled, ugly and fat in…a house, any house in a decent neighborhood to replace the scarlet letter of single-mama on my forehead with another stamp…the American dream..the stamp of homeowner.
I have worked very hard and come such a long way, but the endless compromises I have made are perhaps somewhat unnecessary? I think perhaps I do too many things because I think they are what I should be doing. As hard as it is to admit, I bought a house partly to combat the feelings of inadequacy I felt at being behind my friends in accomplishments. For a little while being able to say, “my house”, these two flats are mine, this driveway, these floors, these walls are mine. I am a landlady. I renovated the first floor flat (with the gracious help of family and friends.) It worked for awhile. It raised eyebrows for my young entrepeneurship instead of my young (perhaps miscalculated) single motherhood. They balanced eachother out in some weird way.
But in exchange I gave up a lot of time, sweat, blood and energy that if I had focused on what I truly want out of life…I might spend that energy differently. It’s not too late. It can always be sold, rented out, demolished by an act of god. The pride of homeownership is in me, but maybe there was nothing to be ashamed of in the first place, in my beautiful perfectly imperfect family. Maybe there was no need to balance it out in the first place. I know I can do this, be a homeowner & landlady. I have proven that, so now I have to choose, do I want to do this?
I have a lot of shame from being a single mother and I am trying to let that go and move on. I have felt that my son’s missing part of his brain is somehow my fault. It is not. That guilt is not helping anyone. I have spent five years hunting down the reason for his disability and I have finally found it, and it had nothing to do with my choices. I thought it would be some massive release, that the shame and gult of having a disabled child would just disappear overnight, once I could medically prove it was not my fault. The green tea, the couple of diet cokes, the beer or two before I knew, the 10 cigarettes I had while pregnant, after I should have known better didn’t cause his disability. The out of wedlock birth, my young age, my lack of a college degree did not cause his disability.
Neither did the 5 servings of vegetables I religiously ate, or the state of the art prenatal care I sought out and worked two jobs to pay for, or the fact that I chose life, or that I turned my life completely around at the news of my son’s impending arrival, none of those heroic things done through sheer strength, willpower , work and staying power, protected him from disability. Somehow my son and his disability and now mine, are meant to shape us into just who we are supposed to be. It is time to let go of this guilt and shame. If there even was a crime, I have paid tenfold. I am done.
I have so many good things that I have done, accomplished and am.
-I have supported my son by myself for 4.5 out of 5 years.
- I held my head as high as I could as I delivered newspapers to my former friends parents houses in the suburbs, because it allowed me enough money to be home with my beamish boy all day. (I never should have been ashamed in the first place for providing for my little family the best way I knew how.)
- I finished my bachelor’s degree paying my own way through for the last 2.5 years. Magna cum Laude. 3.68 GPA. Hard won. Skipped class to do work to pay the bills and skipped work to do schoolwork to pass the classes I worked so hard to pay for. Straight A’s till I realized that an “A” in class would never absolve my sins. (Perhaps I never really sinned to begin with? Just made choices a naive child would make and then did the best I could with what I had.)
-I bought a house in a neighborhood on the edge. On the verge of greatness I still hope. But on the edge nonetheless. I learned to hold my head up high even as tenants’ friends laughed, “you’re landlord is like…12.” Yup. And don’t you ever doubt that I have the strength of ten men. I learned to evict.
I picked better tenants the next time around, nah, great tenants. I learned to lay kitchen floor, wire bathroom light fixtures, regrade around the foundation to eliminate mold, paint, sand, make it someplace I could be proud living, proud to rent out. And even when the neighbors shot all my hopes to hell and drank forties on the porch and smoked a blunt at 4pm, and heckled me while I sweated in the sun. I planted bulbs and weeded and created beds in the front yard while watching my son, my gorgeous son make his way in the world with a sense of home. And a youthful naivety that allowed him to run his chubby legs and never notice the despair around him. This is our home. And when the neighbors fought loudly and cursed the very children they brought into this world, I held my ground. I planted new grass seed in my stubbornly shady yard, and sanded, and painted. I had the house renovated to energy efficient standards. I plant flowers in the porch planters. And I will buy a rocking chair and put it out front. Because this is my home for now…and when it’s a rental, it will not scream “Slumlords own this place.” Not while I own it.
- And I spent years researching my son’s disability. The possible causes, the possible treatments, the best doctors, clinics, hospitals in the world. And occasionally I bridge jumped naked with a stranger just to make sure I was still alive.
-And I found the cause and against all rational advice I followed a crazy far out medical plan and a gluten free, casein free, soy free, corn free (Well, what the hell is left you ask?) diet…and…it worked. My son has gone from very developmentally disabled and struggling in the world, to making amazing progress in less than 6 months, he is now reading at 5 years old. That’s not too shabby especially missing part of your brain.
-I took a massive leap this year to focus on our health. I took 10 months off from work this year, financial suicide, (I racked up more than a little debt in the process). But in the end, my reasons were solid. I found good medical treatment, slept a lot, took better care of myself and took stock of my life. I have healed emotionally in so many ways. Family drama is fading into the background. You make your choices and I’ll make mine.
- And I fought a diagnosis of multiple sclerosis. And I won. And I am 90% better physically.
-And I found a job and I fought my shame and embarrassment ofM.S./Pparkinson’s like loss of muscle control to the point of not being able to walk or talk. And I got up every day for the last two months and said I am here and ready to work. Here is my exemplary work, despite being terrified and petrified and ashamed and twitching like a mofo, “Just pretend I’m like Will Smith Gettin’ Jiggy wit it.” And my work has appreciated my work, on its’ merits alone.
And I am here. I am here and I am 90% better physically, and my boy is recovering amazingly.
And I still have work to do. I deserve to be happy. I can make choices to make my life easier and it is not a copout to move closer to my job so that I can get an hour to myself instead of commuting in rush hour traffic. And it is not a copout to get a babysitter on Tuesday nights so that I can write my pain down and exorcise it from my soul so that I can show up tomorrow and be a better stronger, happier mama. I am allowed to be happy. I must be happy to show my beamish boy how. I must learn to carve a strong and courageous path to teach my boy that he is not disabled. That he has amazing gifts for this world and that they are more than enough to counteract whatever deficits the world may think he has.
That there was never anything wrong with us in the first place. So there is no reason to settle, to accept less than what we want.
So this year I plan to go for it, leap first, the net will appear. Take the time and space I need to be happy. My son needs to see his mama happy to know how to be happy. If I want him to be happy, I have to show him how, and part of that is in not compromising. I need a little more faith, in god, the universe myself…or something. There must be a great plan for us.
This year I will:
-Rip the band-aid off, speak my my truth in a respectful way and know that there is no shame in that, and in fact great things come from speaking the truth.
-Make space, make time for my friends, my music, my art whatever form that may take, no matter how simple, pathetic, or silly it seems.
-Love my boy just the way he is and yet still hold in my heart a vision of boundless possibilities for us both.
-And I will somehow enjoy life along the way and stop feeling guilty when I somehow manage to be happy.
This I will do. This I pray.

Once upon a time, there was a girl. On a dark and stormy night, the wind picked up and howled. It rattled the windows. A gust blew open the front door, flew up the stairs, and blew out her soul’s pilot light. In the dark she groped around for light, but there was none. One day she awoke to a flutter in the belly. A flopping fish churned her insides and squeezed her lungs. 9 months later the fish flipped the switch and relit the pilot light on his way out. He flopped onto shore and as the sun dried the water off of his glistening skin, he was transformed into a golden haired boy. Ordinary looking but for his shining eyes. He grinned up at the girl and she knew that he was no ordinary fish.

Hey all, quick update. I am 95% better and slowly weaning off of my antibiotics. My son has just started his treatment and is progressing nicely. I am extremely grateful to be getting my brain, body and life back. It's been 6 months of craziness, but in the end I learned a lot and continue to grow from the experience. Thanks for all your support along the way!

I am working on Ethan's lyme disease and food allergies. His doc and other docs theorize that the health issues and food allergies stress little bodies and brains out and make them act out behaviorally.

So far on a gluten, casein, soy, corn and preservative free diet, Ethan's behavior seems to be improving. He seems calmer, much more focused, more easy going, more flexible etc. His speech is much clearer and more coherent on the diet. He used to string 2-5 sentences together that had nothing to do with eachother. IE: Mom! I like my bike. Can we go to school tommorrow? where's my car? What's that? Mom! MOm! I want to see Santa.

On the diet they seem to be more like: Mom! At school we're reading The Big Bad Wolf. And the big bad wolf is mean and scary. I don't like the big bad wolf.

I work with a counselor on behavioral issues that crop up with kids with special needs. We've been working a lot on me creating more routine and structure, which was a HUGE problem while I was dealing with the worst part of lyme disease. I developed wicked ADD and couldn't even focus enought to make a pot of coffee because I got the steps mixed up/distracted. I would put water in the pot, but forget to pour it into the machine. Grind the coffee beans and put them in a filter but forget to put them into the coffee machine. I would come back ten minutes later like where is the coffee? Do another step and then still not understand ten minutes later why there was no coffee when I hadn't turned the machine on or put the water in. I went from being able to clean the house in less than an hour- Throw a load of laundry in, throw the dishes in the dishwasher, declutter and clean while I waited for the dishes and laundry. During the worst of lyme/ADD I couldn't even clean my house, I would spend hours frustrated and extrememly confused and finally give up. I forgot to turn the washer on, got distracted, forgot to put detergent in etc.

Now that I'm much better cognitively, everything is so much easier. I can focus, read for hours, do a list of complicated things with multiple steps and complete them in a reasonable amount of time. I'm much more consistent with behavior etc.

The conflict now is between the counselor and I. She wants me to create even more structure and routine and I think we're good with what we've got. I'm focusing a lot of energy on reading about lyme and autism/ADHD treatments and how to treat the underlying medical issues. She wants me to focus more on the routine and day to day discipline. I feel like trying to improve Ethan's behavior with rewards systems and behavioral plans is somewhat of a waste of time right now. It's like trying to push a wheelbarrow full of heavy rocks up a hill. I want to approach the issue by tossing as many rocks out of the wheelbarrow as possible and then work on pushing the wheelbarrow up the hill.

I think in the end we're both right, that Ethan needs consistent routines, discipline, consequences and structure, but also that a lot of his behavioral issues will resolve as his brain isn't so inflamed.

At the worst of my lyme ADD/confusion, I tried making lists, reading up on ADD friendly organization etc. and tried extremely hard, but I still could not make coffee or clean my house. I basically gave up and did the best I could but mostly focused on getting the proper medical treatment/nutritional support to bring my body and brain back online.

Now that the treatement piece is over the hump, everything else is easily falling into place. I clean the house, remember appointments, stick to a better schedule and routine etc.

Any thoughts?