Knock, knock

I'm about to tell you who's there, even if it has been a few years since opening up. This feels weird after so long, but there are some events that I'm going to need to keep track of and I hope you don't mind me indulging in a somewhat public way of where I am and what's happened and to become. So greetings and welcome to my update.

(Disclaimer: I like cursing. The fuck you say! I do say the fuck!)

The warnings of what alcohol does and how the children felt meant nothing. There was a messy first involvement with DHS and the children's father abusing them. They stopped wanting to go due to violence and alcoholism, often witnessing or being a victim of the abuse. Since we didn't alter custody and I refused to send them back, I did 6 days in county jail and got 18 counts of contempt of court(6 days and a few thousand dollars for what was ultimately the safety of my children was well worth it and I'm not ashamed of it. Any parent who loved and believed their children would do the same). Because I wouldn't send my children back to their abuser. After that I had no option but to send them bac, not doing so meant risking custody and that wasn't a gamble they could afford me to take. Reluctantly, I sent them back and the second weekend the kids complained once again of drinking and driving. He didn't like feeling his children were snitches and the third weekend in he assaulted my youngest daughter who shook and wept, begging me not to have to go to his house that evening. Our intuition and fears were justified. We took her directly to the local children's hospital and from there we ended up at a sentencing of her father pleading guilty to child abuse a week ago. Five year no contact order has been a relief and hopefully not one we will have to use. This is the most disgusting and deplorable case of "I told you so" but the doubt always goes to the victim and not the accused, right? Pardon the hardest ryeroll I can muster. Notice I give no details, nor will I- this wasn't premeditated or motivated and details aren't public business. What's said can be found on public sites. We are choosing to move ahead with our lives and stop living in fear and pain. We are hoping for peace and respect of boundaries, just to be left alone about it. Please respect that given our aim is for peace,  I will say there's been a great deal of suffering as a family and hope that outside of this onetime address about it will be the only. Aka- don't ask because I won't tell.

Moving on to what will be the focus from here on out...my personal journey as we navigate through rare disorders that are also taking the focus of my life. I started writing a book but clenching the pen became to painful so pardon any autospell errors 😬 For years I've been in and out of terminal status with a mystery set of diagnosis and issues. My print out of current issues at the doctor is 4 pages long now. Not the summary. Not my vitals. Just. The. Diagnosis. Upon getting a shot in my hip last December, the ARNP was closely studying me: examining my skin in my hands, asked me to try a couple of things that could bend like my fingers and if I could palm the floor (everyone can't do that?!) mentioned my Raynauds and asked about a few other things. She said my increasing joint pain and other spikes in medical issues were the result of my EDS advancing. Pardon me?! My what? A couple of years prior my rheumatologist diagnosed me with Hypermobility Joint Syndrome and all of my other issues were part of that disorder spectrum called Ehlers Danlos Syndrome and didn't I already know that. I left confused but also a bit relieved. I had a stroke and heart attack two years ago, a couple of trans ischemic attacks, a ruptured gallbladder, renal and liver failure, a bleeding disorder, have essential tremors, Raynauds, Fibromyalgia, degenerative joint disease, dystonia, have strange sensitivities that we now know is Mass Cell Disorder, a whole host of others and now this weird sounding thing. Ehlers Danlos is a rare genetic connective tissue disorder. Connect tissue pretty much makes up most of our body, like 80% so it can potentially fuck up your everything, and it has with me. I thought that the wait for the geneticist was going to be the worst part, and so far it is. Getting a diagnosis after suffering your whole life, being called a whiner or a hypochondriac, being told it's all in my head or I'm doing it for attention (Please tell me who the fuck the magical bastard is that can dangerously lower their platelets at will) Years of knowing it was all something tied together. A month before 38 I met myself for the first time.

When I say I have a good care team, I mean it. I feel spoiled after such a long time trying to find a doctor that was up for the challenge I medically am. My general practitioner is an Internal Medicine Specialist that teams with an ARNP. Many of the other medical professionals I know see him - doctors, dentist, specialists and even SEVERAL nurses. This guy is a damn superstar in my eyes, and his ARNP has to be one of the most compassionate people to walk this earth. She has downright cried and apologized that I have to go through so much. Seeing these two not only want to treat me but to treat me with validation is amazing. So when I take notice that they are increasingly worried, suffice it to say, there are some nerves. The amount of testing and lab work, doctor appointments and therapy appointments (once again something I'm not ashamed of dealing with your mortality and chronic illness is devastatingly difficult please don't try this at home) travel time and expense, research, recovery time for any number of illness related reasons is daunting. Recovery is unpredictable, sometimes it's an hour nap and a snack to be functional and other times it's crushing fatigue and hypertensive cluster migraines that leave me incapacitated for days, laying on the floor of the shower bawling and hoping my head doesn't explode. The latter has been a precursor to some of the most frightening experiences of my life. You don't know fear until THAT moment and I've had a few. It was looking promising treatment wise until the headaches wouldn't quit. I belong to a couple of support groups and have had several good suggestions. I saw myself mirrored in so many of them that it felt impossible but then there was one that fit so perfectly.

So just when we thought we were at a plateau of diagnosis for a bit, the obvious problem hit us right in the face. It was a routine follow up and I just wanted to run the thought by my doctor to see if I was reaching or if it was a valid concern. When he asked what was new and what we should look at this visit (yes, this doctor is for real) I asked what he thought about Cushings. Said I felt like I had some of the Classic symptoms even the and I swear it was in unison "the buffalo hump". He said he had never personally diagnosed someone but had patients come to him after they were already diagnosed. That said, I was the best candidate he had ever seen and although it was rare we were going to immediately start testing. Blood draws that morning and a 24 urine test to take home. We should see results by a week or so. Blood work was easy enough, a good phlebotomist is hard to find and even harder for someone with vascular EDS. The 24 hour urine test was annoying and at times scary. Every single drop of pee for 24 hours was to go in this jug, which was poured in by one of those weird toilet hat specimen collectors...gross, not what I wanted to keep in my fridge. The 24 hour test was an awful constant reminder of the whirlwind conversation in the doctors office. My normally reserved and conservative approach doctor prepping me for MRI and CT Scan, an endocrinologist and neurosurgery because it seemed like a tumor on my pituitary gland. The pituitary gland is right behind the nose. It was startling and I'm still shook by the look on his face and frantic preparation. Not his style.

My nature is to be an information hoarder. The countless hours of research on sleepless nights and empty days filled every crevasse for a time before it was emotionally too encumbering. Time to talk things through and start making plans. Neurosurgery?! Spinal fluid leak?! Weeks of recovery without much cognitive function, possibly having to relearn basic things. Fuck. Fuck. Fuck. I'm going to have to go through those surgery doors hoping I continue to eat vegetables and not become one. This is the epitome of overload. If it's surgery or radiation, whatever but I want and need to see my oldest graduate before I make any decisions.

The amount of panic I hold back on a daily basis nears a metric ton. I reserve myself these days. I'm private, rarely go out and if so it's to have some BBQ with the family or to get the kids some clothes, every now and then catch the local AA baseball team, hit up the local swimming pool in the heat. Our yard and landscaping take up most of my energy. I'm hoping I can get some major work done so that we don't have to do as much when we grow old (please, Divine Energy let me grow old with my husband and kids) I don't know what I get allowed but I'll fight for every second. There's more of a mark to be left on this world and I'm not done. For now we are just waiting...