So Tired

Thursday I took youngest to the pulmonologist. He was diagnosed in March with sleep apnea and this past Thursday, we went to the first appointment with the newest specialist.

Expecting judgement again, I steeled myself for this appointment. For years my youngest has been struggling with insomnia. He cycles through about 26 hour day. Sometimes he goes for a full 27 hours awake, sleeps for 5 and up again for 12. He’s ALWAYS done this, since he was a baby. Pediatricians have always said “it’s a phase” or “He’ll outgrow it” or “put him to bed and make him stay there” I’ve done everything they recommended, fought with him, lectured him, disciplined him, comforted him till I’M in tears to no avail. I’ve fired doctors who said it was my fault…. So I was expecting the worst.

Surprisingly, she was very knowledgable and compassionate, listening to the concerns and FINALLY agreed that something was wrong. She made different recommendations that no one had made before, including making the sleep ritual MASSIVELY different. She also said that it would help him if we got a light box to help his brain produce more Melatonin at the right time to help him sleep. She diagnosed him, tentatively with Non24 sleep disorder. Aparently, he will need the light box for his lifetime. The Melatonin we have to order specially from a website because they do quality control and has the best formulation for his issue.

She told us about how the sleep regulation will also help his type 1 diabetes get under better control and save him, down the road, from blindness, leg amputation and heart disease which are possibilities if we can’t get it under control. This is something even his diabetes specialist had never told us!

He has to go in for another sleep at the hospital to titrate him for a cpap but before then, he has to wear a monitor for 2 weeks to see exactly what his sleep is like, when he wakes and sleeps etc.

All this means for us is more doctors I have to take him to because his father refuses to go to ANY doctor appointments. In 12 years, he’s been to 2. When I told him about the things we needed to buy (of which only the Cpap is covered by insurance) He blew his stack. Yelling about how everything is too expensive, how we can’t afford this, how he can never get any money saved because people in the house are always coming up with something ELSE to waste money on… It wasn’t pretty and all it did was make my youngest cry because “it’s my fault I’m sick” How the hell do you counter THAT?

I waited til my husband went to bed and talked to my son about how it WASN’T his fault that he’s sick, that he doesn’t deserve to be yelled at like that and he called his father an asshole. I agreed with him. He asked me when I was going to divorce his father… I’m wondering that myself. Blaming a CHILD because they have health issues…. That’s pretty damned low. I think it’s time to start looking into getting out of this situation. Maybe then I’ll be able to figure out how to come up with the money to pay for needed medical care for my baby….


I sometimes wonder….

How one person can put up with the things I have to go through every day. It’s always something. It’s said that you never know what burdens or storms another person has even if they tell you. It sucks being so alone.

For three days I’ve been putting my “good face” on. You know, the one that says “I’m fine and the world couldn’t be better” while inside you’re screaming “HELP ME!!!!” It doesn’t do any good to scream… nobody’s listening anyway.

For three days, I’ve barely been able to move because of the pain. Three days I’ve gotten up, cooked and cleaned and tended the kids without help. Hubby has had a migraine for four days and hasn’t eaten in three days. He’s managed to take all MY migraine meds and now I have none except the ones I hid from him.

It’s the 15th of June and I honestly don’t think we will have enough food to make it through to the third. I’m down to eating once every two days just to make sure the kids have enough to eat. I’ll have to go to the food bank this week and do some volunteering to get extra food to make it. I can stand to go without a couple meals a day. I’m fat. The kids though… They need to eat. It’s a good thing I know how to cook from scratch. Even if they DON’T like having rice and gravy twice a week. I need to figure out what to do with the canned salmon we got from the food bank last week. The only thing I know is salmon cakes but we’re out of bread crumbs. I suppose I could make my own… We have a LOT of bread from the food bank. Seems that’s the majority of what they give.

This weekend is Fathers Day and the kids want to buy dad something. We don’t have any money so I told them we should MAKE him something. Youngest reminded me of the LAST time they made dad something…. It wasn’t pretty and the boys won’t do it again. They “don’t want the drama”.  It might be better if we just make him a cake. I DO have the mixes and the 24th IS his birthday… Perhaps an early birthday party is in order 🙂

Unrelenting agony

LAst night I went to sleep at 10. The pain in my shoulder woke me at 2. At 4 my legs went into spasms and woke me, screaming with agony. I hobbled to the bathroom and got into the shower with scalding hot water, it’s the only thing that helps.

Hubby slept through the scream not even a foot from him. Thank God it wasn’t serious but my min pin was right there, trying to make things better. God only knows what I’d do without my little guy!

15 year old went to his best friends house while I was gone yesterday and hasn’t come home yet. I wonder if I will… I wouldn’t blame him if he didn’t come home. Sometimes I wish I could leave.

Husband and 30 yo daughter got into a fight last night. Screaming and yelling at eachother, a couple punches were thrown then things calmed down. Daughter came in to talk to me about hubby but there’s not much I can tell her except that she’s old enough to do whatever she wants. Her self esteem is piss poor at the moment, she suffers from schizophrenia, DID and bipolar disorder so I’m a bit more…. flexible with her than the younger two. She’s more like a 15 year old herself mentally and the doctors say she might never be able to be on her own. When she moved back home, it disrupted our entire life. It’s stressful now, every day because we never know what she’s going to be like each morning. Some days she sleeps till dinnertime and gets up long enough to eat then back to bed. I wish to God I could figure out how to help her!

Today, I’m exhausted from yesterday. My fibro is flared badly, legs hurting horrendously, arms hurt, back aching.. Shit even my HAIR hurts! Took the dogs for a walk this AM and did the dishes that weren’t done last night. Now, I’m taking a pill and going back to sleep (I hope)

Please God, let today be quiet and filled with peace.

OK, I’m done with today!

I’ve gone back to bed before anything gets worse.My day today:

Went to bed about 11 last night only to be awakened by the pain in my right shoulder at 2, 3, 5 AM.

Got up and got breakfast, my shoulder still killing me. Got dressed and ready to go. Not an easy feat with my shoulder screwed up like it is. Put on the sling and get it settled, fill my oxygen tank, one handed because the men of the house were too involved with their computers to pay attention to MY needs.

Then I had to walk a mile, up hill, to the bus stop and missed the first bus so had to wait 30 for the next bus. I said to myself that this was starting out bad….

Get off the bus and stop at the light to cross the street. #6 bus is at the stop, traffic is heavy so I can’t run against the light. The bus leaves, making me have to walk from 88th and Pecos to 84th and Zuni. It takes 45 minutes to walk there. It’s almost all up hill again.

Halfway there, it starts POURING rain. Velcro is scared to death so I have to carry him. Him in my left arm, my backpack on my left shoulder, oxygen tank around my waist, and the umbrella. Right arm is in a sling remember.

By the time I got to the Dr, I was in tears from the hip pain and my shoulder. Got checked in and the thunder and lightning started. Que panic attack.

See the Dr and get different (better?) pain meds and a MRI script.

Pouring rain when I leave. Walk to Walgreens and slip on the floor just inside the front door. Landed on my ass and bumped my head.

Took a cab home after getting meds. Got home at about 1 PM.

I’m not leaving my bed any more today except to pee…. I’m safe here!

What to do?

My middle son… what to do to help him? His step father picks on him, has for years, but I don’t know what to do to stop it. It breaks my heart to see him cry like he did a few days ago. He doesn’t understand why the only father figure he’s ever known hates him so much. He doesn’t know why he gripes at him all the time, why he doesn’t understand him, why nothing he does is ever good enough…. and neither do I.

My husband isn’t physically violent, normally. The past two years have gotten bad though. He’s had physical altercations with my 15 year old son, his stepson. He’s put him in headlocks, slapped him, even stabbed a garbage can then said “Better it than him” When I called the police, they told my son that dad “has the right to discipline” him.

My son told me that he wishes his step father would die. He’s also said he wanted to kill him. I remember having those same feelings toward my father when I was younger than he. It hurts my heart to know that my loving, sweet son harbors such feelings toward my husband.

I wrote a blog post on another blog about my concerns that there is abuse happening in my home. My husband saw it. Unknown to me, he’d started following my blog and ….. well…. it wasn’t pretty. I see, more every day, that there is abuse happening. Subtle yet incessant. He controls with guilt trips and coercion, subtle threats in a tone of voice and snide remarks.

But what can I do? I can’t just leave. I’m on 24 hour oxygen and the youngest son has to have medical care 24/7.I’ve told my husband a few times to leave and he has threatened to but never does. He DID walk out, Christmas morning 2013 but came back 2 hours later, drunk.

I’m afraid, trapped and feeling like a complete failure right now. What am I supposed to do?