What's Shakin'?

I ask my husband that because I am campaigning hardcore to drive the bus to hell.

Because my husband is shaking.
Because he has young onset Parksinsonism.

We have been through a ton of specialists, many thousands of dollars in testing and now we know why he can hardly walk and why his left arm has a constant tremor. He had a DaTscan done last week where they use a radiopharmaceutical tracer to see dopamine activity in your basal ganglia. He hardly has any activity, so there we go. A diagnosis just like that. Finally. And its awful.

He is 42 years old. And he has Parkinson's Disease.


And surprisingly, he has even lived what Republican senators cannot even argue is a good life.. He's a lifelong vegetarian. Never smoked. Literally took one sip of beer on his 21st birthday, though he may have had a few teaspoons of Lutheran communion wine over the years. Exercises. Works hard at his job and has been steadily employed since he was 15. Makes charitable donations and even became a foster parent.

Still got a fucking degenerative brain disease.

A day will come when the muscles in his face will no longer allow him to smile at me, and however hard anything has been in our life so far, that day will be the hardest.

The Year in Review

I feel like finishing 2015 should earn me some sort of prize. It was hard, damn hard. And I kept on rising to meet all of my responsibilities as hard as I could. Some other shit happened, but all I really take away from 2015 is that we got through it.

The sadness is still there. But there is also some hope. We have gotten the ball rolling on Special Needs Adoption through the foster system. I hope that this is the year we become parents.

And I want to do more yoga and shit, too.

I can't adult

Today has been a total shit show.

I had a thyroid check 5 weeks ago, after we increased my meds from January. It wasn't cooperating fast enough, so we bumped up the dose of thyroid hormone. I had a recheck yesterday, and it is worse than before. We have to increase my dose again. The theory is that getting my prolactin down, has allowed my estrogen to rise and therefor my thyroid is further out of whack. And fertility drugs can also screw it up.

Needless to say, the whole hormonal cascade of my cycle is 17 flavors of fucked up, shitty ovulation, short luteal phase, freaky barely happening period and on and on and on.

Also, I am tired all the time. I want a nap about two hours after I wake up. My bones ache. My hips hurt no matter how I sit, stand, or lay. My hands ache. My hair is falling out again. I hardly ever feel warm, even laying in bed on flannel sheets next to my space heater of a husband underneath two comforters. Wearing a sweater over my jammies.

I'm pretty sure I'm never going to get knocked up. I don't know how to pick up all the pieces of my heart. I don't know how to let myself hurt this much. I've worked so hard to learn how to have feelings again and now I don't know how to make it stop.

this week in adulting

I took another round of fertility drugs from Saturday to Wednesday. I have pretty much been bursting into tears at the drop of a hat since Tuesday, full on sobbing. Uncontrollably. Usually til my nose bleeds. And my ovaries occasionally hurt like little burning motherfuckers.

 I filed the taxes that I completed last week.

 I went to therapy with my PTSD/trauma therapist on Tuesday and after about 18 months of hard work we will begin to wrap things up this spring and move forward on a more “on call” basis.

 But I had to call my behavioral therapist for the first time since January 2014, for a check-up. I didn’t want to have to do that. I want to think I am handling all of this just fine. I can take it. But at knit night on Wednesday my hands started bleeding in several places. Because I wash them too much. Because I’m not handling all of this just fine.

Meanwhile, back at the ranch...

I have a second blog that I ignore slightly less than this one.
It's all TMI, all the time over there though.

I mainly started it to just kind of keep track of my thoughts as I continue on this journey and I am narcissistic enough to think someone else might want to behold my navel gazing.
Or read about bodily misadventures of a TMI nature.

I mentioned the TMI, right? Because it is there.

You have been warned.

Confessions of a Mama Wannabe

Yep. My hat is tossed in the ring. Which, now that I think about it, reeeeeeeally sounds like a euphemism.

This day

This day is like a minefield for me. And I feel selfish even saying that. My mother is still alive and I choose to keep my distance. No, it's more than choice. I have to keep my distance. I have to. Because I have worked far too hard at putting myself back together again to let her come in and pull out my still healing stitches. And she would.

She sent me a letter a while ago. A handwritten note. I handed it to my therapist who read it with arched brow. And then went to photocopy it for my file and instructed me to go home and put it away and just not think about it anymore. Which is hilarious since a large part of my work now is to stay present in the moment and to feel my feelings when they happen. Because I learned to not be present on her watch. I learned that when someone was hurting me that the best thing was to just not feel it. I learned that I wasn't safe and that there was nothing I could do about it. There was no parent who was going to protect me. So I got very good at not feeling it. I got good at acting normal. I would crack a joke to hide my pain. I didn't dare show a vulnerability to be turned against me later. I learned that she could really give me something to cry about if she wanted, and sometimes she wanted. 

I had a nearly full on panic attack in session a few weeks ago and my therapist had no idea until I confessed the next week. We sat, 5 feet apart while I fell apart inside with my heart trying to race, the room spinning, my stomach churning, my mind racing. And I couldn't pipe up and say that I was not OK. To someone who is there to help me. Who isn't going to hurt me. And who is a clinician who deals with trauma and knows how to spot these things a mile away.

And that's why I have cut ties. I can see no version of my life at this time that includes being well and having a relationship with her. I can have one of those things. I picked me.

This year there is a new layer to the day. An emptiness that I haven't quite felt before. The kind that catches in my throat and makes it hurt to swallow a little bit. Because I am not a mother. And before I found out that was even remotely possible I was OK with it and I accepted it was part of the hand I was dealt. Sure getting wished a happy mother's day just because you look old enough to have kids has sucked pretty much every year for a decade. But by not being a mother I was also not going to risk becoming her, I was in control. It was my choice and now, it's not.

This year I am no longer childfree. For the first time in my life I am childless and so aware of it that sometimes it hurts. It hurts to breathe. My eyes sting with tears. My belly aches. I press on with the work I do in therapy, because forward has become the only acceptable direction for me to go. If the time comes, I cannot allow myself to be her. I don't want any child of mine to feel unsafe. To feel frightened of me. To feel so alone that it hurts. To be afraid to cry in front of me. To feel like I did.

Is this thing still even on?

I just walk away from my blog for 6 months at a stretch and then always come back with approximately the same not very witty title. I am nothing if not consistently inconsistent.

So, last I typed and you read I was working on cognitive behavioral therapy to get my OCD and panic attacks under control. In September, Team Annie gained a new player. Another therapist, this time a lady, to help me sort out some trauma and PTSD issues. Which is what I thought would happen all along from my initial phone conversation with  D about setting me up for CBT. Because I knew there was a well of pain I had constructed my entire life around avoiding. And right on schedule, once I began to have so much less fear about the minutiae of daily life, some of these bigger and more painful experiences started to slip up to the front of the queue. And they are ugly. And they are shameful. And there were flashbacks. And nightmares.  And awfulness. And instead of hiding, I said I needed more help. So for a few months, I was seeing two therapists weekly and The Man and I were seeing a third every few weeks.

At the end of January, I graduated from CBT so now I am just down to the trauma work and the marriage work. Both of which are going pretty well. The marriage work was to begin to make some new patterns now that I don't require as much care taking. Because being me was hard on my marriage. And as much as he wanted to protect me and keep me from being hurt, it wasn't healthy for him to have to take care of everything all the time, not healthy for either one of us. The trauma work is hard. There were times last summer when I was touching a bathroom door handle at Target, or watching the puke scene from Bridesmaids for the 500th time and I thought that was hard work. There were times when we began to move toward my discharge where just the thought of it would make me cry, because I was so scared. I wasn't sure how I was going to be able to live my life  without having to tick off banned behaviors. How I would conduct my errands when they weren't assignments? How would I stay accountable when I was the only one I had to be accountable to? Because I haven't done so hot when I am the one left in charge of me and I felt very sure that I wasn't going to be able to keep my shit together.

Those were hard things, but now they seem like a cake walk compared to the work I have to do. And there isn't much homework for this. Except that when something painful comes up, I can't pack it away in a box and put it away at the back of my brain. I have to live with it. I have to let it suck. I have to help my brain find context for the events so that it can be properly refiled so that I stop reacting to anything similar with full on panic. And I have to use grounding techniques sometimes to keep from flashing back or dissociating. At any given moment I can be somewhere and trying to appear calm and inside I am looking at the walls, the floor, listening to the music, whatever things I can see, hear, smell, or touch to help me stay grounded in 2014. And it works more often than it used to.

And as I repair damage, I sometimes feel at loose ends. I got so good at being broken that I forgot how to be anything else. Not that I felt like a victim, in fact I never felt like a victim. Which is part of my problem, because there were times when a victim is exactly what I was, but I was so unused to being allowed to feel my feelings that I stuffed it down and convinced myself it was my fault. Because I deserved what I got, because I should have known he was a bad person before it got to that point.. I refused to admit that this sort of abuse was something that happened to me. I wasn't sitting around feeling that the world had done me wrong, I was just broken. And now I am patching up the damage a little bit at a time.And I have begun to try and get on with the business of having a life. I meet with friends. I stay responsible for social contact. I run errands. I do stuff. And every day it gets a little bit easier.

My life has turned around nearly 100% from where I was last year at this time. I have plans. I have some good things happening. I am participating in my marriage as more or less an equal partner. We look forward to what the future may hold for us. I am beginning to sometimes feel normal. That I don't have to be other. That I am not only a pile of broken and sad and yuck, no matter what was drilled into me from a very young age. I can be sad and I can feel hurt and I won't have to cut off the world or cut or scratch myself to control the pain. I am a person who is learning to have a life, to allow myself to have hope and dreams again. And I am so late to the party for so many things and just trying to make up for lost time.

This is photoblog!

You have to read that title in your best County Fair Demolition Derby Announcer voice. You do have one, don't you? Doesn't everyone?

I am too lazy to do a real blog post, but need to exercise these writing muscles just a wee little bit. NaNoWriMo will be here again before I know it and I have no idea if I am going to go for it again this year or not, but I need to get into a much better writing practice.

So let's dive right in, shall we? With a photo.

Looks a piece of bread with jam on it, right? It is. But this is why it's a big deal for me tonight: I drove alone to the grocery store wearing no makeup at all on my face to buy that bread. While I was in the store shopping I went from one entire side of it to the other, stopping to go up one middle aisle for oatmeal. I stopped by the alcove for the bathroom to put my palm flat on the wall for one second and then checked out and came home and put my home canned jam on this bread and am now sitting here eating it with wall germs on my left hand. Because I can't wash my hand yet. And when I do finally wash my hands? I have to make a tally mark on in my notebook of banned behaviors to keep track of how often i wash my hands. Because on Thursday? It was 18 times that I remembered to mark it. And that didn't even seem like a lot to me at all.

Why do I have to do these random weird things? Because before July 2, 2013 my driver's license had been expired for 5 years. Because I didn't go anywhere by myself because I was too frightened. And then I stopped going anywhere at all pretty much for around 2 years. And I don't ever want to get back to being that sick again. So I touch walls. I make random small talk with strangers. I eat pretzels from a bag that my husband put there for me because he isn't a good hand washer and I don't like to eat food he has touched unless I have inflicted my OCD on him. I don't get to ask him to wash up before he touches the pretzels, and he can't do it right after he showers. I mentioned before that these are my troubles, and this is how I am tackling them. One weird task at a time.

Also? I'm not allowed to knit in public for the time being. Coping mechanism, ritual, barrier...blah blah blah words. I get it. I don't like it, but I get it. When I sit in a waiting room all I want to do is knit, the calming motion of the needles, yanking yarn up every row or so with my right hand. Instead I sit there and let the awkwardness just roll over me. I look at the magazines and mentally alphabetize them. I imagine them being in a tidy pile on the table. Or at least not left wide open on the table, Jesus Tapdancing Christ, people, REALLY? Close the magazine for fuck's sake!

If it's really bad, I can knit. But I am suppose to dole out the knitting in public like Klonopin: sparingly on an as needed basis. And I am tenacious and don't like to give in, so I just knuckle down and don't whip out the knitting. Sometimes I take it in with me in case I need it, sometimes I leave it in the car. Or even leave it at home.

But there has been knitting. I actually feel a renewed interest in knitting at home, possibly fueled by excellent shows on Netflix. I finished my Shalom. I love it. If I get my shit together tonight I may also finish my September Swing cardi and then can see how fast I can knit up Juliet.

Oh and while I am here, my liver seems to have passed muster as of earlier this month. I still have to be careful, but my numbers were within normal range for the first time this year. It's promising.

Well, this is a thing that happened.

So since I was sick in January, I have acquired a fair number of medical professionals that I tend to think of as Team Annie. I have a new GP, a psychiatrist, a therapist and as of May, a new endocrinologist. It isn't a secret among those close to me, but I have struggled with anxiety and panic attacks for most of my life. In my thirties, it got worse. While in hospital for my evil gallbladder, I requested a psych eval while I was essentially stuck with no place to hide. Kind of a roundabout way to do things, I know, but I suppose desperate times call for desperate measures. All that matters is I finally asked for help. And I am getting help. And I'm no where near better, but the world is a tiny bit less scary than it was for me 6 months ago. I am sure I will talk about this more in the future, but it's some background on how these particular members of Team Annie were involved in this latest chapter of WTF Theatre.

Thirteen years ago I was diagnosed with a genetic disorder called Congenital Adrenal Hyperplasia. There are different forms of it, if you have ever heard of it before it's probably been  the classic form where girls are born with ambiguous genitalia and the sex of the baby cannot always be determined by looking. It's more than that, though. The classic form can be fatal because it can cause salt-wasting. The non classic form, which I was told that I had, has symptoms like irregular menses, hair loss, weight gain and other delights. The symptoms are very much like Polycystic Ovarian Syndrome but PCOS is based in insulin resistance while NCCAH is based on a body that doesn't make enough of the hormone cortisol and in trying to stimulate the adrenal glands to make enough, too many other hormones are produced and things get out of whack.

So I was told I was essentially infertile on my own, and my husband and I would need genetic counseling if we did decide to have children with fertility assistance. CAH can be fatal in infants and children if there is salt-wasting or an adrenal crisis occurs. I was twenty six years old and had been married for three years. I grieved. I always wanted a baby, maybe two. My husband was less certain, I knew he was a fence sitter. But this seemed to close that door for me. But my husband, I think, was in some way relieved, he could now freely state that he was positive that he did not want children.  Ever.

For several reasons it was a rough patch for us at that time. There were growing pains for us. Some typical of young marriages, some maybe less so. And then we found this out and it seemed to help us find some common ground again and we worked out  some issues and moved on confident that not having children was the right course for us, the only course, really, since I was defective.

Fast forward to December 31st, 2012. As I am being triaged in the emergency room I have to make sure they know I have CAH, because I will probably need steroid support to keep me from having an adrenal crisis after vomiting more than I ever thought was possible for one human to vomit. It is noted in my charts, the next few days were a blur for me between dehydration and massive amounts of dilaudid for pain control. Things got more clear after a PICC line was started and I began to get hydrated for real 48 hours after I was admitted. CAH was not brought up again and I kept forgetting to ask. I assumed at some point, I was given steroids.

Seeing my new GP once I was sprung she noticed that I had not been given steroids, she asked some questions and we focused on the issues at hand. It kept kind of popping up in the back of my mind. So after a couple months, I asked my psychiatrist and therapist if it was possible that my adrenal issues could be affecting my anxiety levels. Their answers were a resounding YES. So I asked my GP if we could test that. We did, and holy wow did I open a can of worms. My results were not what we expected. So she referred me to a new endocrinologist.. Which made sense anyway, since I am now diabetic and have a thyroid that has decided to crap out on me as well. So I go. More blood was drawn. Saliva was collected. Again,the results were not adding up. He decided on one more test, an ACTH stimulation test, which would be conclusive once and for all.

It was conclusive, and the conclusion was that I do not have this genetic disorder. I never did. The labs all indicate that I have healthy and functional adrenal glands. My CT scans from pancreatitis were reviewed again to look at my adrenals glands, no lumps or bumps on them. Healthy. Which is good, do not get me wrong, one less thing that can kill me? Yeah, I am more than happy to take that.  Bring that shit ON.

But also, I was probably never infertile. I was never at risk for passing along a fatal disorder. I had choices that I never thought were going to be available to me. But I'm not 26 anymore. And my health has taken a serious hit this year. And my husband is more convinced than ever that he doesn't want to share his life with children. Just when I am realizing it's something I might have wanted after all. But if that door is still open at all, it's closing fast. And there is only one person I would want to have children with, and he is positive he doesn't want them.

How did that happen? There was a shitload of blood work to get that diagnosis, it's a fairly straightforward process. It's not really something that could be accidentally interpreted. And even if it was, I had follow up labs. I had followups after she began treating me with steroids. For a year. I was on corticosteroids for a year. For nothing. Steroids that can impair your insulin response. And that reproductive endocrinology clinic has since closed down and my records were lost in one of the floods in my house, and my new doctor could not get ahold of my original labs to see why I ever would have been misdiagnosed.

So that's where I am now. I have known this for nearly a week and the shock of it all still takes my breath away and makes me cry. What I am most angry about, I think, is that with proper treatment I might not have ended up diabetic at age 38. That we could have treated my insulin resistance and I could have implemented lifestyle changes 13 years ago that would still be benefiting me today. And I also feel like I have some more grief about choices I never had the chance to make. I am sad and I am angry. I am so angry.