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...

You've Earned It

Catharsis time. Brace yourselves for a huge purge...

If you have ever ventured into one of my writings, you are probably aware that personal responsibility and owning yours is paramount to being a good person and being able to grow. Can't improve what you deny. Social media and I had to take a break for a bit because of personal circumstances that made me even more sensitive and I was looking for a little privacy for our family. It's time to break the silence though and let some of it out. 

Over the summer, I was informed my father was terminally ill. We went to see him at his request. I figured that letting a dying man say what he needed to was the right thing to do. While the end result wasn't sunshine and happiness, it did turn out for the best. It's no secret that my family from my childhood runs on the wrong side of the law and have heavy abuse history (physical, alcohol, drugs...you name it) so opening myself up to that again was approached with trepidation. I knew what got him in the hospital but to hear him say he got there by "being a fucking drunk" was a bit surprising. He laid there in the hospital bed - swollen, missing his right leg, in immense pain, delusional- he blamed being there on a bat bite at one point, frail (the man was 6'4" and was a plasterer for 40 years so at his peak he had an intimidating stature) not lucid for the most part, angry, bitter and the most horrifying color of a maize/umber I have ever seen. He admittedly earned that position. Over 40 years of being a drug addict and an alcoholic earned him a miserable end to life. He's 65 and being kept alive by life support, mostly comatose. He was bitter about my success and happiness in life because I have earned something that eluded him due to his choices. 

Alcoholism took my former boss the same way. A millionaire that gave up his marriage, his children, his home, cost him his livelihood (he quit a 7 figure income) and his life. Also once a physically fit and active person - college football player, former helicopter paramedic, bodybuilder and avid bicyclist. But don't even get me started on cyclists and the rampant and encouraged behavior of drunkenness - that culture is positively riddled with alcoholism. He blamed others constantly for his misgivings and mistakes. He would lash out and get angry when he had been "caught" doing something he wasn't supposed to and would blame the person who discovered the wrong instead. You never knew what kind of communication it would be. Alcoholic behavior is only predictable to an extent. One moment he would seem together and the next he would be angry and incompetent. He suffered delusions as well - the days prior to him quitting were nothing short of terrifying. He was screaming in our office hallway at ghosts that he was going to shoot them. It was frightening not knowing what frame of mind he would be in. Early in life he earned himself an enviable life, only to squander it on the more attractive prospect of booze. He died last December at 58. After all, alcohol is sexy, right?

My children are now suffering from an addicted parent with a startling amount of similarities to the previous two men mentioned. Those details won't be set out here because my children don't deserve to have their specifics released publicly. A brief overview will have to suffice for this part. A former? Meth addict of at least a decade from the early age of 13, about the time he started drinking as well. He has been in rehab 5 times to no avail. At 42, he lost his first marriage and now his children from it. He is facing losing his home, his job and his freedom as well. 30 years of addiction has my children afraid for his fate, they've seen it deteriorate him already. Like other addicts, he "earned" his alcohol by a hard days work or having to deal with the stresses of life. 

Life is stressful. That can't be avoided. Alcohol should never be where you turn when there has been complications of life. If you have a hard day and feel like you have "earned" a drink - you are an alcoholic. If you are blaming others for your mistakes or problems - you are an alcoholic. If you find yourself lying or not able to recall events properly- you are an alcoholic. If you need alcohol to have a good time - you are an alcoholic. If you can't go weeks without a drink - you are an alcoholic. If your children know your drink of choice and see you drink frequently- you are an alcoholic.While it ends up a disease, it starts as a choice. Alcoholics will make excuses to drink and blame others for their drinking. "I had a tough day" is not a reason to drink, it's a reason to reexamine your choices. If you feel like this could be about you - seek some help because this is about my frustration with the alcoholic society we live in, not any particular person. Earn something better in life than a drink and an addiction. Earn the trust of those in your life, earn the ability to live clandestine. Earn the ability to be able to own success, rather than blame others and make excuses for your failures. You earn what you work for, for a better world for all of us, earn a good and sober life. 

With all of that divulged, don't be surprised if our household won't be around you if you are an alcoholic. We will choose not to expose our children to alcohol and any events where it is prevalent because they have been traumatized by it. We will make the right choices for put family and that choice is a life that doesn't have alcohol present. We are happy with who we are and don't need to escape from reality. We have made our choice, that choice is a commitment to our overall well being. We choose not to have alcohol in our home. We choose life, hope you do too. 

Living With Dying

Living healthy is the slowest rate at which one can die. That phrase sucks. I DO live healthy and am currently considered chronically ill and recently found out that I am believed to be terminally ill. The sad truth is that sometimes illness is beyond our control. Genetics, accidents, side effects from operations or medications are the biggest contributing factors to my illness. That isn't me dismissing my shortcomings health wise - I binged and purged as a teen, alcohol use in my early twenties, anorexia in my late 20s/early 30s and a horrible soda addiction that was, at one point in time, a twelve pack of soda a day. Stark difference from where I am at currently. 8-10 bottles (16-20 oz) of water a day and occasionally a soda, somedays not even one. Food intake is limited to the Fodmap diet (I don't even like cheeseburgers anymore) I exercise reasonably and often, mostly in the yard doing work like: weeding, digging, mulching, sweeping - that is about 2 hours a day, so no lack of exercise. There is a part of me that hopes my commitment will do some good because I'm not foolish enough to think it saves me.

Being chronically ill is nothing new, it started 15 years ago. As illnesses and diagnosis after diagnosis adds up, my resolve had worn down some. Battles I choose to fight are the ones that are truly important. Believe if I am standing up for or expressing something right now, that it had warranted such a response and has merit. I not interested in tossing my spoons (check out the spoon theory about being chronically ill) in the air like I am making it rain in the club. Each one is precious and reserved for NEEDS. If I spend my spoons for you, I am placing your well-being in front of mine. Learning how to spend my energy and how to find more has been a tough adjustment. My husband calls the feverish and intent pace I practice as "insanity pace". Insanity pace is a product of pure fear, fear I am running out of time and leaving things unfinished for others to complete. So when you judge how ill I am against what I can still accomplish, it often doesn't add up, but that's because of the unseen variable of this equation - determination. What I lack in health, I have determination in spades for.

Being chronically ill has been a suffering of more than just the physical sense. The worst suffering isn't the pain or the psychological process of coming to terms with your mortality, but the emotional strain of personal relationships. People tire of complaints about being ill, question the validity of your illness, detach themselves because sick people are lame and boring, lack of social interaction, family and friends who never offer help despite knowing I am ill but feel free to not only ask but expect me to do for them, watching my husband suffer watching me be ill and nobody offering him an ear or a shoulder, missing out on my opportunities to be with my kids because my body shuts down and goes to sleep, having people not understand that sometimes I just don't feel well enough for social events, feelings of failing my children even though they get phenomenal care, the fear that this will pass on to my children and they will suffer the same fate. Our home used to be filled with friends on the regular and they have all disappeared. Some friends can't even muster a reply when you tell them how sick you are. The worst part of being chronically ill is the loneliness. Evenings in bed while my family laughs just a room away, seeing people post publicly they are close but never stop by, being excluded from plans, not having anyone to relate to, desperately trying to hide my tears and pain from my children because it is important to me that their empathetic souls are spared my suffering.

Sometimes these days, the worst part of dying is living in loneliness. I'm still alive and still a person an would like to be treated like one, knowing full well it's too much to ask.

Midlife Crisis

It is more than just a kickass song by Faith No More. Midlife crisis is very much a real and largely not talked about. We usually just pass it off as blame. "What's wrong with (fill-in the blank)?! They have everything but just can't seem to get it together". Most likely whatever is wrong with FitB if they are in their 30s is a midlife crisis. 

"I don't see myself going through a midlife crisis, I have a pretty solid head on my shoulders" Oh those are fateful words! We pretty much all go through it, but are either unaware of what it is or completely in denial. Being unaware is the most common. Nobody wants to talk about midlife crisis, it's embarrassing. Everyone has this pejorative in their head of some skeezy dude with a small weiner driving around in a convertible, but the reality is that it is far wider reaching than Leisure Suit Larry. It's Small Office Sally who begrudgingly gets up and goes to her mundane job all the while wondering why life seems like a routine and the interest is gone. It's Business Bob that takes his kids to soccer games and can't help feeling a little angry at the ability to play and be careless that his kids have. It's Stay at Home Suzie who loves her children and handling all that is the daily grind of keeping a house together, but feels like she has lost her identity in the process. 

Knowing that you or someone you are close to is going through a midlife crisis is important to making it through it. Signs of midlife crisis:

Depression - also another uncomfortable topic and one that will be addressed in another entry
Feeling like life is routine, boring, monotonous. That you NEED excitement in your life.
Feeling unhappy for no apparent reason. Just general disgust with the world around you, including your own part in it. 
Being emotional and overwhelmed. 
Looking for something that is "missing" but you just can't pin down what it is. 
Feeling distracted sometimes hung up on the whatifs.
Feeling like you have missed out on good times and resenting others for it.
Loss of interest and joy in normal activities 

I have come to reckon midlife crisis to a second teenage coming. It feels like being a teenager again! We are moody, uncertain, selfish, angsty, disillusioned and really unhappy, plus we could sleep for like 8 days straight if EVERYONE WOULD JUST LEAVE ME ALONE! 

Suddenly, we feel all of this pressure crashing down on us. It appears out of nowhere and you realize that you haven't been legitimately happy in weeks and start wondering what is wrong with you. There isn't anything wrong, it's just another growing phase. If any of the people who happen to read this drivel have children, you will know what I mean by growing phase (bitchy/bossy growing phase, whining growing phase, not eating growing phase, being a jerk to everyone phase, acting like a baby phase) The pressure is internal and external. 

Internally we are completely disillusioned with the world around us, what we thought it would be, how we thought we would be, how we thought we were going to impact the world. We have become the uncool adults that we swore we would never be. Gone is the apathy of the 20s and it is being increasingly replaced by jading life experience and glaring reality. We thought we would be more than this - more important, more successful, more stable. We don't meet our own expectations, but we can't meet our expectations because WE don't even know what that is. Nothing is enough. Most of us have this seemingly perfect exterior life, our public facade if you will. All the while we are being great actors because our internal dialogue screams at us that we are anything but perfection. We are confused, feel like we don't have the answers to solve the problems, we are frustrated. Worst of all, we can't seem to save ourselves from the downward spiral. We dislike ourselves.  

External pressure is secondary, but equally impacting. We feel like we have to keep up this facade of perfection, less risking the judgement from others. We don't want to embarrass our children or parents with our behavior or feelings while trying to sort this out. Worse yet - if you have a tween or teenager while going through this second teenage coming! Trying not to butt heads and communicate without completely ripping your parent/child relationship feels almost impossible. How does someone who is moody and irritable find a way to keep a healthy relationship with someone who is selfish and short-sighted? Just basic communication can seem like a trying task because we are so disillusioned with the world around us that we just want to hide. We don't like anyone, we don't want to be around anyone. There is also a problem this generation of midlifers have that our parents didn't - "modern pressures". Modern pressures are things like cellphones, internet and both parties in the home having 40+ hour work weeks. We simply aren't ever allowed a time to not be responsible and that is very wearing. Could you imagine a time when if you didn't want to be around someone that you could just go for a walk, not talk to anyone or to be accessible and not have them freaking out?! Most of my friends have been trained to not expect me to reply right away because that was an expectation that I just couldn't keep up with. We have to be selfish enough to take time away from answering others so that we can listen to ourselves. 

What it boils down to is that midlife crisis is an identity crisis. We are trying to figure out who we are in comparison to what we thought we would be. We don't exactly fit the measuring stick of everyone else for what is success. We are angry because we should be, this isn't what we thought it would be. That anger of a midlife crisis is what molds us into who and what we really will be. Anger isn't all bad, it's a great catalyst and that is what it should be used as. Use your anger of your midlife to find the passion that you will need to make the rest of your life feel more successful and satisfying. 

I have been out of my midlife for a couple of years now, but there is still that occasional tugging reminder that malaise is still lurking.  The good news is that on the other side of midlife, there is a bit of solace. You find whatever it is that makes you happy, you find a sort of peace with the way things are. Don't get me wrong, things still get to me, I still get pissed off and boy do I ever! The difference now is I know what anger I can do something about and change and what anger belongs to someone else. The biggest lesson to all of this is to just get out of your own head! It's a scary place in there! Other people have been through it and chances are that your friends are going through it too. Have a little bit of understanding and a whole lot of patience - you will be ok.