We Are Standing on the Edge…

I just basically want everyone to know that my family and I will be okay. Everyone has things that go wrong. Everyone gets sick. Everyone has trouble now and then with government red tape. People change jobs. All of it is possible to deal with and all of it is way better than losing a child, or a spouse. Or losing your home, or starving. Even though we are struggling financially (understatement) we have support which allows us to eat, and live, and even keep the girls enrolled in their activities.

X got a small role in our Youth Theatre group’s fall production, a Dr Seuss twist on Romeo and Juliet. It’s probably the smallest role in the cast, an unnamed Capulet (Capitulate, in this version) Servant, but she doesn’t care at all. She’s just happy to be involved. In this, I could learn a lot from her.

My appointment with my pain specialist also went well. 

Dealing with Medicare and Medicaid today was a total failure, but that isn’t surprising. Medicare said Medicaid would drop me if I un-enrolled from Medicare, and Medicaid said they couldn’t help me at all, that “you have to understand ma’am, the two programs are completely separate” and didn’t seem to understand at all what I was talking about. I will need to go in person to my local office. When anything providing my medical support starts to break down, I completely freak, so J said he would be the one to go into the office since he is much less likely to break down sobbing trying to explain the situation. Unfortunately my wonderful pain therapist doesn’t take Medicare and won’t see me until the situation is resolved, which was a disappointment to me to say the least. I have little hope that all this bullshit will be fixed by Monday, so I will have to cancel that appointment; Dr Mac suggested someone else which I don’t want to do and also broke my heart a little. But still. This is a temporary setback.

J is applying for jobs. I got my CGRP injection today and am very lucky to be involved in that study which is something I never take for granted and need to remember is a major positive in my life. There are other positives as well: my volunteer work at the historical center, participating in the Youth Theatre Advisory Board, and my Etsy shop, Wind In The Door, which is continuing to provide me with satisfaction and a little bit of extra money.

The edges of things don’t always lead to pits of despair. If you can find the easier-to-descend slope, or the previously-hidden stairway, you can lead your children out of the harsh wind to a valley of lush green and calm. 

And in the meantime, there is always hope.

And just right now an example of the magic J and I share, and why I believe we will always be O.K. : I sent him the above video just as he sent me the below. 

I feel my luck could change.

  

Everything Is Horrible – I mean, Fine!!!

My stomach hurts. J has resigned and is wrapping up his cases. And looking for a new job. The changes and our tension make the girls nervous and they are acting out, making it difficult for us to get anything done. We all have colds. I have a fever. And cold sores, which I get from stress. X has auditions tonight for the fall play.

Disability put me on Medicare and things are such a mess that I didn’t realize I had to actively decline it so now I’m on it and it costs money, and my pain therapist doesn’t take Medicare, so I have to call and straighten it out somehow, might be straightforward or it might be hell, but I hate stuff like this. Red tape beaurocratic stuff emphasizing my poverty.

And poor. We are poor. We are so fucking poor. Just applied for Food Stamps again and I know J will get a job and it will be a GOOD job this time, one that isn’t traumatic and pays him what he deserves, and we have help, but it is so scary right now. The cloud of unease has settled on my shoulders and in my chest. I walk around feeling like a zombie. 

School starts next week. A time of year that is always hard for me anyway. And expensive. And heartbreaking. And scary. And X goes to 5th grade camp like the first week. And her molar is loose and bleeding, which I guess is normal at 10, but a huge tooth gaping and filing my daughter’s mouth with blood periodically doesn’t feel normal.

Zo is pretty much an emotional basket case. And is starting first grade not knowing how to read.

And last weekend I had to go to the ER for my standard puking level 8-10 headache. I had to go twice. They didn’t give me multiple doses of pain meds this time and in fact the second time the nurse said “To give you more we’d have to intubate you.” I may have mentioned this in a previous entry; I was very depressed afterward. The first doctor kindly wrote a prescription for tablets which my parents tried to fill for me but because of my pain clinic prescription it wouldn’t go through, so they called my pain doctor, and she approved it because she’s awesome, but now this afternoon I have to go see her and she’ll know I went through my supply too fast and I am very nervous.

The CGRP injection didn’t seem to work as well this time, although I now  am having very few headache issues since the ER, just stomach stuff and anxiety. I get my monthly CGRP booster tomorrow. 

I feel like I’m standing on the edge of a cliff in the wind, and the girls are clinging to me, and all my effort is going to keeping them from falling or even being scared of the heights and danger. “It’s not that far! But don’t look down! This breeze is nothing but don’t let go! And don’t pick on each other! And don’t cry! I’M DOING THE BEST I CAN OH MY GOD!!!!! No- no- I didn’t mean to yell, it’s just this wind- I mean the breeze—”

And worrying does no good. I know that. I know I need to stay calm for them and for J and me too. But it’s so very, very hard.

  

FRIENDS

Yesterday’s post was written in the throes of depression and fear. What I should never have said is that I lack friends. Yes, I’m disappointed to have recently lost some of the closeness I’ve felt in some significant relationships, but honestly I have more friends, far and wide, in person and online, than I probably deserve.  I realized that in stating I feel friendless I maligned those very important people who support me in every way they can. To those people, THANK YOU.  I apologize for hyperbolizing based on fear. I love you all. 

 New friend Colby with my daughters at Hogwarts Camp

But You Won’t.

I’ve been absent. I don’t really know what to say about it. While my participation in the CGRP Study has been amazing, and I have longer pain-free periods, somehow I end up in the ER more often. Everything in my life is changing. J had to resign from his job over unfair labor practices and while I believe he has a good plan for finding something new, I’m terrified. I don’t want to rely on others anymore for the things we need. I want my daughters to feel safe and secure. My baby is about to start first grade, a milestone which was extremely hard for me when I went through it with her older sister. Soon, I turn 42. I seem to be losing friends, or at least losing the closeness I shared with those friends, faster than I can make new ones. Who am I kidding? There are no new friends on the horizon for me.

 I want to feel motivated. I am still volunteering at the museum, working on my Etsy shop (www.Etsy.com/shop/WindInTheDoor)  and a member of our Youth Theatre advisory board, all activities I find worthwhile and rewarding. I thought J and I were going to go back to school (together) but scrapped that idea when a week of playing various ghosts at Hogwarts Camp and then a theatre conference landed me in the ER, a migraine from which I still haven’t fully recovered. Attending classes and studying doesn’t seem to be in the best interest of mollyfing Medusa. So I am still collecting meager SSI and have no idea when I’ll be able to work again. The Etsy shop is doing okay, especially for having been open only 6 months, but I wish it would do better so I could feel I’m contributing something.  I am doing everything right with the shop, and am continuing to try to do it better, but right now everything feels hopeless. 

The kids are growing up. The kittens both died. The house looks like a bomb hit it. There’s no way I’m making it to the County Fair this year. I’m having a hard time getting X interested in practicing her monologue for the fall play which means she might not get a part and will be beyond devastated. Zo’s behavior is getting tougher to deal with as she can’t handle her own negative feelings without trying to hurt others emotionally and her extremely sensitive sister exacerbates that issue. J doesn’t have a job. I can’t have a job. I can’t even get out of bed right now.  

 
Welcome back, LadyMigraine. You suck.