Category Archives: illness

illness

Another day…

It was a relatively boring weekend here at the ol’ homestead. Not that I’m complaining. We haven’t done boring around here in a long time. I wasn’t really sick(not that I was really well, either). There were no obligations. No serious drama. The only serious thing was a trip to AAA to end my mother’s insurance and put her car on our policy. This is something we should have done a month ago…but grief doesn’t like to help you be productive…in fact, it usually shuts down that part of your brain.

I won’t say that it was easy canceling my mother’s insurance. It was still heavy. But it wasn’t awful either and though I was tired, I was glad it was finally over with. But I did have a bit of a meltdown when I was alone after….I had intended to write since the hubby and the cute were out doing stuff, but I didn’t get to it. Instead, I had a conversation with my mother. A heated one, as most of them have turned out to be. I mourned… she didn’t say much. It was the usual.

But besides that? Nothing. I played games. I didn’t write. I don’t feel bad about that. I just let it be. And now, as the cute plays his coveted iPad…I will try to get something done. But if not…ok. I really like this laid back method. For so long guilt and self shaming have been my constant companions. Sometimes, I am floored by their absence. You mean I can just play a video game and read without  feeling bad? I can just take a weekend off without feeling like the worst mom in the world? It’s freeing on a level that defies words.

And I would usually be panicking by now…NO WORK IS FLOWING!? Have I lost it? Will I ever write or paint again? What is going to happen?! But it’s fine…I know I will write again…most likely as soon as I finish this blog post. And I will paint again because, hell, it’s fun.

My life is fun again!

Fun has been sorely missed around these here parts. It’s been a hot commodity. And now it’s coming in spades. I’m smiling more….crying less. I’m laughing. And my patience is increasing. Three months out and I’m already feeling more like myself. I hope that gives others hope if they are in the same place as me. Cause fun felt like a bad word in the beginning. It felt wrong to smile. I felt guilty for the fleeting moments of forgetfulness. Hell, I felt guilty for breathing. And now? I feel good. Not great. Not miraculous. Just good. But it’s slowing building up to real good. And even so, I’m still expecting some bad days again as well…that’s the winding road grief likes to take. Two steps forward. Three steps back. Four steps forward. One step back. But it’s going to be ok. And ok is totally worth waiting for.

My therapist and I finally got around to talking about grief this past week. We’ve touched on it before but to be honest, there was so much back story to get through…well, it just didn’t come up much. I was too overwhelmed by the onslaught of feelings still lingering from 20 years ago. I was lost in sea of unexpected emotions. I needed to sort those out first before I could actually deal with my mom’s death. And to be honest, I hadn’t really even felt her absence yet. It still just felt like an extended break. But now it’s getting real. She’s gone and I’m trying to move on. I’m sure it will take a few months or even a couple years to get back to perfect….actually to get to a place I’ve never been before. But like all the great struggles in my life…it’s a road worth taking. I will be better for it. So I’m going to keep talking about it. Keep facing it. And hopefully, the other side of grief will be life without any self imposed limits…any guilt. Hopefully.

So this all may not be worth a blog post…it’s just bits and pieces of the same…but I figure that’s a good thing right now. Boring is nice. Calm is good. Average is a step in the right direction.

Now on to working more on my novel…

The end of the year and an end of an era.

She’s dead.

My mother.

It still doesn’t feel real even as I type this. It still feels like she’s a phone call away and I’m just “taking a break” from the crazy. But it’s not a break. It’s permanent. There are no more chances at resolution. No more arguments. No more toxic remarks to tear down my ego. No more criticisms. But no more hugs. No more beautiful blue eyes that sometimes, for a moment, said I love you. I am, at once, in shock, relieved, and devastated.

She was my mother. And, at one time, my world revolved around her. There was a time, when I was young, that I wouldn’t want to leave her side for fear of her dying. I knew that she was sick. That it was possible. And the thought was my greatest fear. To lose her love was to lose everything. I would be left alone with the rage that was and is my father. He would have nothing to stop him from beating me…from destroying me. I was dependent on her. In comparison, she was loving and soft. She didn’t yell. She didn’t hit. It wasn’t till much later that I would realize that you can destroy something much greater without raising your voice. You can wound someone without a touch. She was a Trojan horse filled with the kind of hurtful comments that become the little voice in the back of your mind. The awful critical demon that makes you double-check every choice and read between every line. The one that tells you that compliments aren’t real and that you aren’t worthy of the love given freely around you. She wasn’t nice. But she wasn’t obvious either.

And now she’s gone…on the tailwinds of a tempest that she created in the last months of her life. Cruel words were thrown freely, cuss words vomited up toward me in front of my four-year old son, paranoia and delusions were her last companions. It’s like she imploded… all the lies and toxic waste that had begun to eat her alive over the last decade seemed to engulf her. It made her crazy. No matter what I did…how much love I tried to show her, she was convinced that I was trying to keep her down. She saw deceit in my truths and agenda in my gifts. She was forced to a mirror and it was the last image she ever saw.

The last time I saw her alive was the Friday before she died. It was the day after Halloween and we were coming to see her and show her pictures of Trick or Treating. She was in a nursing home…trying to rehab her way home and she was getting much better. But she had news that she was sure I was going to destroy and she was ready to strike out if I didn’t say what she wanted to hear. “I’m going home on Tuesday!” She was so excited that her body vibrated. I was not as excited.

“What do you mean, you are going home? What’s the news?”

“They said I’m better…that I’m doing fantastic. Tuesday, they are getting together to discuss the details of my release. Maybe we can do dinner out that night!” My mom was almost manic.

I frowned and that was all it took.  A dark cloud formed over her head. “Did you tell them the truth this time?” It was only a couple of weeks out since the last time this happened…she had lied so hard it had been frightening. Telling the doctors, the nurses, and anyone else that would listen at the hospital that she had my aunt and I to take care of her 24/7 and that she was totally ready and able to care for herself. No mention that both my aunt and I weren’t speaking to each other, that I have a four-year old son to take care of and a pain condition that stops me from doing even the basics. No mention of the dog and cat she was responsible for that she couldn’t take care of. No mention of the stairs and tiny hall that would be impassable by wheelchair. It had been a nightmare as I struggled to alert the right people before she was discharged. I mentally prepared to do it again…and silently cursed the administration for not talking to me first before giving her this hope.

“I knew you would ruin this.” She scowled hard at me and I unconsciously hugged my son tighter as I prepared for her rage.

“Mom, I’m trying to help you….not ruin things. I want you to come home and stay home and I know that if you rush it, it won’t happen. I can’t take care of you and my son. I can’t clean two houses. And you can’t afford a 24 hour nurse. It’s not possible.  You aren’t even strong enough to go to the bathroom by yourself. You can’t stand for more than a couple of minutes and your house is not wheelchair accessible. It’s a bad time until you are stronger.”

“I would do it for you if it was the other way around.” She seethed with anger…

“No, you wouldn’t. You wouldn’t even come up to hug me when you were well and I was pretty sure that I had a tumor in my brain!” I kept my voice even and soft for my son’s sake. Almost sing-song. I was suddenly glad that he was engrossed in the iPad.

We glared at each other. “Go away!” She suddenly was crying.

I switched my words to soothing, comforting tones. I told her it wouldn’t be long. That she was getting stronger everyday. That she just needed to work the program a couple of more weeks and then we could split the work with a social worker that we could afford. She would be able to stay home and not make a quick return to the hospital…my biggest fear being that she would fall on my watch as I was unable to physically lift her or help her move. How would I bathe her? How would I help her on and off the toilet?  And if I’m honest, I will admit that I wasn’t happy at the thought of being around her frequent and sudden fits of rage. Especially since my son would have to be with me. She could be so cruel and jealous of him. I didn’t want him to see her like that on a daily basis. His well-being had to come first.

“I said, go the fuck away! You just want to keep me down. You have the control and you just are loving this, aren’t you?” Her mania was now mounting with rage.

“Watch your mouth, mother…little ears are listening and you are being mean. Of course I don’t want you here. This is my nightmare having to see you suffer and struggle all the while completely stuck trying to do everything in two households. I am spending everyday in the car for hours and the rest on the phone with case workers and hospital staff. This is not convenient or fun for any of us. I love you and want you home where you belong. I would even let you go if I could…if we could, without legal recourse. I believe a person should die where they want and so if you wanted to risk it, I would say sure. But the truth is, if I let you go home, knowing I can’t care for you and you do die, my family can be held responsible for neglect. It’s not something I can risk with my son. We have to do this the right way. I’m sorry. I love you.”

“Go away, I don’t want you here anymore.”

“Don’t say that…you don’t mean that. What if that’s the last words I ever hear from you? Please…”

“I said, go away!” And then she turned her chair and rolled away two feet with her back to us. I stifled a laugh at the absurdity. I was long past taking her shit personally. This was nothing compared to some of the nastiness she had said even a few days before.

We stayed for a few minutes so that I could give the illusion of calm to my son and give her the chance to cool down and change her mind. But she didn’t and so we left. I had him give her a hug and I wrestled with whether I should too. But I really didn’t want to. I was hurt and tired. And so instead I looked at her face for a moment and memorized her eyes. Her beautiful blue eyes….even when they were angry. I kind of knew, for some reason, that this would be the last time I would ever see them. It felt important. But I brushed it off as my usual worrying. And then I took her advice and spent the weekend with my family. It was the first extended break in months. It felt good.

On Tuesday morning, the day that the meeting was going to be held (They had called me later to invite me), I received a call from a frantic nurse. My mother had taken a turn for the worse. I needed to come. I asked if she was dying since I wouldn’t want to bring my son to the hospital to see that. I would need to get someone to watch him. She told me to get someone. My heart freaked and sputtered and then I was dull…numb. This couldn’t be happening. She was almost going home. She had been getting better. She couldn’t be suddenly dying.

I didn’t make it. The doctor called just as my husband got there to go with me. She was already gone (Later, I found out that she had died hours earlier but her pace maker had confused an incompetent nurse into thinking that she had a pulse). My world shifted into black.

My mom. My beautiful mom is gone.

I miss her so much it takes my breath away. And yet I would not be honest if I didn’t admit that I feel relieved. It’s over. It’s been weeks without new wounds. Weeks since I’ve been yelled at. Belittled. And with each moment of relief comes fresh guilt…even though I know it’s normal to feel this way. It still feels wrong.

She was my mother. I loved her deeply…always will. I also hated her deeply but I’m determined to let that go as time passes. To make her death a time of change and new beginnings. To heal and forgive. To let go.

I love you, mommy. I hope you aren’t in pain anymore. I hope you know how much you meant to me. I hope someday to remember only the love we had.

And your beautiful blue eyes.

Enough

My family is crazy. It's no wonder I have problems.


Today I had an angry, confused mother who thought she was going home and was mad that

a. it wasn't true,

b. her coffee was cold (my drive is 40 minutes and she likes the coffee & pastry from a place near me), and

c. I talk too much( I'd spoken less than ten words at that point).

All of which seemed out of my control and she was damn rude about it.


Of course she's in pain.

Of course it sucks that she's in the hospital.

But it's no excuse for taking it out on the person who is trying to be there for you. And I told her so. I also told her that if she kept it up, I would leave. She shut up. And then we did our best to work around the elephant in the room that is our failedrelationship.


She wanted a hug. I could tell. But she's a cactus. And she doesn't know what she needs or wants.

Kind of like the daughter she raised.


I feel bad for her. And I feel bad for me. I know for a fact that she will die and there will be guilt. Hers will be over. Mine will live on. It's frustrating. It's life with a narcissist. Not the cute version. The one in the DSM.


I also dealt with my aunt, secondhand, as she loses her mind over someday losing her sister.

Blame the drugs.

Blame the daughter.

Blame the doctors….

Just don't blame yourself and don't just accept.

It's all so very depressing and maddening.


And here's me…just trying not to get hit by the aimless bullets. Living to assuage the guilt firmly seated on my shoulders.


When I was six, my mother turned to me while we drove down the street…

Honey, if I fell dead on the steering wheel, what would you do?”

And then as I started crying, she explained how to grab the wheel and shove her lifeless body over so that I could hit the peddles.

My mother…such the planner.


I can't tell you the first time my father told me that I was killing my mother if I didn't do the dishes…I think it was around the same time. Her heart has always been a problem. Except when it wasn't. Like when she wanted to do something.


Today, as always, I live in constant fear. Of death. Of life. Of doing things wrong.

Today I told my mother to stop being rude to me. It felt good to deal with her. To not allow my guilt to wait until I explode. Italked to her like The Cute. And it worked. She shut the fuck up. I wish I could go back and high five that six year old and tell her….look…don't worry…she's going to live till 71.

It's a ruse.

You were and are perfect.

You love them…that's enough.
You are enough.

Thank you for the coffee, pastry, and the time, cause she'll never say it.

I love you.

A new beginning

 

My mother broke her hip.

 

It's been that kind of month. My mother is 71 with an attitude. Just that…a tude. And we haven't really been the best of friends in the past 18 years…since she and my dad divorced. After he beat me up and left me on the side of the road on the way to college…

 

It was the culmination of 20 years of mental abuse. That had threatened on many occasions to get physical. It might have been better if it had…it would have been more black and white. As it was then, and now, it was grey. Always in my life. Shades of grey. Sometimes I embrace them. Sometimes I hate them. This is one of those times that is both.

I love my mother. But she was a big enabler. A big part of the problem and not so very unlike my father…just less so. And so my feelings at the end of her life are mixed. I've tried to get us to go to therapy together. Nope.

I've tried to talk to her about how she treats and talks to me.

Nope.

So it just is what it is. Grey.

And so are my thoughts lately. I love my mother. I hate her being hurt. I've put my all into the past few weeks helping and stressing myself out. I hurt. My family is now sick with the flu. And I've had a giant chip on my shoulder about the whole thing. Maybe because of all she represents. Maybe because all the drama,one year to the date of the last hospitalization, has brought out the grey in eveything and everyone I love.

Friends. And husband. And life…all shaded in grey. I want to love my life and all it encompasses. But I don't right now. I should. But I don't. And I know I'm a big part of the problem. And I can't just run away from that. I've spent the last couple of weeks hating myself. For my choices. For my needs. For my feelings. For everything. But I can't do that. It just brings everything to a grinding halt. Hence the no blogging.

I know what I want. I think.

I want to love myself. I have to…for my sake, my life's sake, my child's sake.

I want purpose. I can definitely change that. Find that. If I stop the panicking.

I want beauty and romance. And that I can do for myself…want to do for my child.

I want adventure. And that is a matter of opinion. One I need to change for the sake of my child.

I want someone who cares deeply for me. Someone willing to upend their life for me. I want a village. I want to cherish and be cherished. But the truth is that I'm kinda broken. Was from the beginning (see forementioned abuse) and so I don't think I'm wired to choose that kind of life. Some parts of me don't like me very much and don't think I'm worthy of it despite hours of therapy. Some parts don't like to gamble cause the people who were supposed to be a given weren't. So I went with the easy and the aloof. And so that's what I get. And that's not to say that those people in my life aren't a thousand shades of wonderful in their own way….it's just not what I dreamed of. And truthfully, I think that's the epic search all abused children make. They want desperately for that unconditional love they never had; that they were supposed to have. That relationship so sacred between parents and children. And my chance came and went…against my will but it didn't break me and so that's something. I made it this far and I don't seem to be passing it on to my little one. And I am making sure it won't. But for me, I have to stop this endless searching. This needing. And let go. Grieve and let go.

And so I need an attitude adjustment.

Some things I've chosen are permanent and so I need to readjust my way of thinking. Others are changeable…and so I'm going to change them.

But the bottom line is…I need to stop wallowing. It's not just my life anymore. My child is watching and learning and it's not fair for my life to interfere with his. And maybe someday, he will be in this same place. I need to help him make his way back to happy. And so I need to make my way back to happy.

So I know the map.

So this is a new beginning. For the blog. And for my mind. I am worthy of being perfectly happy…and it's time to find a way to there. On my own (in my mind), at first and then when I'm full up then maybe I'll learn to lean again. But I hope to get myself to at least write every other day or maybe every day with my journey to my new happy. I deserve this.

Everyone does.

 

Cloudy with a chance of Gray?

headstormMy unlucky streak hasn’t let up. I haven’t been really in the mood to post as I’m tired of hearing myself in the gray. It’s not me.

In the beginning of this medical nightmare, I was just worried….but I was still able to live my life normally. I had pain but it was mild and came and went sporadically. I would spend my weekends in the clubs dancing. I was always road tripping. I loved to move and meet new people.

Now my life is small. I stay home the majority of the time. In some ways, I love my small life…my husband, my son… but in other ways, I feel like I’m a shell of myself. I don’t laugh very often. I cry on a dime. I enjoy things still…watching my son play, snuggling with my family, creating on a good day. But if I’m honest with myself, it’s like I’ve changed into a completely different person. One I don’t recognize. One I feel sorry for.

And then there’s this week. I had a brain MRI last Saturday…to check on some “fatty deposits”that were found last year. You see, they can’t really tell if they are plaques or tumors without rechecking them. So I was understandably nervous…and more so when the tech’s attitude changed post scan. I am very good at reading people. Very, very good.

I knew they saw something…but I was reassured that it was because there was something to see even if it was benign.  But then I got the call…a call that they needed additional scans. I instantly felt like I was punched in the stomach but immediately rationalized that they screwed up and needed a couple redone. So I tried to schedule it for a Saturday and told them to add the neck scans I needed done also(my rheumatologist is ruling out a pinched nerve or disc problem). The man immediately said that he didn’t have an opening for this Saturday (today) and so how about Monday. I asked for the following Saturday…and was told that it had to be sooner…not later. The breath left me in an instant.

So now I’m terrified and scheduled for Monday. WTF.

And then to add to the merriment, I dropped an entire cup of scalding, freshly boiled water on the back of my hand while I was making coffee on Fri. For a moment, it seemed like I was destined for the ER again because, holy fuck nuggets, it hurt like a bitch. But it calmed down after about four hours of bad pain and what looked like blisters at first. Then on Fri night, I developed another cold. Yes, another one. Cold #2,000,000 of this year alone. *sigh*

And then to finish off the week proper…my iPad, the toy I love most in all the land, slipped out of the bean bag case it was in and smashed to the floor. *double sigh*

Trust me, I know that’s a first fucking world problem. I am so lucky to be able to have any toys…and really, the TV and the iPad are luxuries I shouldn’t have. We should have been so much more responsible and put that in savings. I shouldn’t have it to mourn. But when you spend so much time in bed. So much time in pain. Those technological wonders are a lifeline. They are the distraction that helps me cope with how small my world has become. They give me something to share with my son when I can barely move. They break down the walls of my house and give me the illusion of still belonging in this world I desperately love.

Cause I can’t go in the sun (it causes a flare).
I can’t go out in the heat(causes a flare and makes me nauseous and increases the pain).
I can’t make plans(cause if a flare hits, I bail…and since I’ve spent so much time alone…my friends are all booked up with healthier people who can enjoy their summers).
I can barely work(too much pain so I can only work in very short shifts).
And even when I force it…I go out and “have fun”…well, it’s always tainted by pain. Always.

I feel so very alone. And almost like I’m already dead and everyone has already moved on.

So when I think about how I could really be dead…how there might be a tumor on that scan. I actually can imagine just what will happen.

And I just can’t believe this is happening to me. It’s like a cascading joke. A nightmare that I can’t wake up from. Just as I’m starting to get my life together…get a pain management regimen, doctors who say they can help…a diagnosis. That after all this time searching for an answer…that it might be game over.

I can’t bear to imagine not seeing my son grow up…that he might not have his mommy. Or worse…someone in my place.  It just can’t be. Please don’t let it be.

Cause I can deal with the pain. With the colds, flu, accidents, and time in bed. I can deal with broken technology, giant copays, and financial ruin. I could happily live out of a box. Just please let me spend the rest of my life being there for my son. I just want to be there to kiss his booboos. I want to hold him and smell his hair….hear his laugh. Please bring on the pain…it pales in comparison to the joy I see in his eyes. Take my legs, my eyes, my hands….just leave me.  I can’t have cancer. Oh, please don’t let it be that.

Just the thought of him growing up without me, makes me so sick to my stomach and causes this sobbing panic that I can barely control. He’s my universe. The only consistantly good thing I have ever had. The most permanent and unconditional love I’ve ever known. And I have so much more to give this world. I want desperately to leave a legacy for him to be proud of. I don’t just want to be a faded memory of a sick woman in a bed. I was and am so much more than that…if only I get the time to work on it. I want to be the best person I can be…for him and for me.

I want to walk him to school for the first time…
I want to see him fall in love…
Find a passion…

Oh god I’m losing it…It’s just too much this past year… almost losing my mother. Having back to back health issues, moving away from Seattle… And there’s been so much more in the past few years…I’m primed for catastrophe.

Oh God, I’m so scared.

I hopefully make it through Monday…going to give myself a stroke with the worry. And I hope they get the report fast…cause another thing I’m supposed to avoid? STRESS! Lol…that’s a serious joke.

The Crisis Mindset

On Thurs, I had just finished getting ready to go out when it happened. Just as I was pulling The Cute out of the bath, I heard a pop and suddenly there was an excruciating pain in my tailbone. Six hours, a shot of dilaudid, and a few X-rays later, I was home and wondering WTF. 

It's been a very long weekend. My husband, though he means well, usually disappears when I'm sick or hurt. I don't really understand it but that's just what happens. He takes The Cute out to a million different places and I spent the day watching tv or playing games on my iPad. But it always needs up with me thinking too much. And that is a bad thing when we are in a place this. We have a thousand decisions needing to be made with no resolution in sight. Questions that have no answers. Where are we going? Where can we live? How can we afford a home? What will I be able to do with my condition? What are we going to do about preschool for The Cute? How can we help my mother (who is slowly deteriorating and will eventually be unable to live on her own) when we can't help ourselves? How is my doctor appointment on Tuesday going to go? Should I even hope that its going to be helpful or should I just expect the same old rejection. 

I am just filled with anxiety and it doesn't help that the accident on Thurs started a flare. I am absolutely exhausted, the pain levels are high, stomach issues abound, it feels like the tropics despite air conditioning, my tongue is full of sores, a dull headache accompanies the fierce eye pain and blurry vision, and I am nauseous. And on top of it all...I have a toddler who has been spoiled all weekend with attention and now doesn't know how to play on his own. I can barely hold my eyes open. 

It didn't help that last night my husband and I got in a disagreement. Because I was left to think so long alone, I suddenly felt lonely, upset, and needing answers about our future. I was angry at his distance. I am frustrated by our position in his family's guest house, and the procrastination we both have been promoting concerning our future. Truth be told, it was a bad idea to talk just then as I was emotionally charged and nothing was really going to fix it. But I just couldn't help myself. I wanted answers. I want to know where we are going. I feel like such a failure. And at times like that, I always seem to try to fix him or us...or someone else. I feel helpless to fix myself, to end the ever present self loathing, and so I want someone to join me. And it ended with him not even wanting to snuggle. Ouch.

When I feel like this, so very tired and so done, everything seems wrong. In fact, I can barely stand to hear myself. I hate the my words, my whining. I'm tired of me. Stop the merry go round, I want off. 

I used to be so hopeful. So fun. I am an artist and a gypsy(not really but I love roaming free). I used to drop everything at a moments notice and run to New York on whim at midnight for a slice of cheesecake. I used to dance the night away at fun, crazy clubs. Wear unusual and crazy clothes. Ponder the workings of the universe. I used to paint all night and sleep away the mornings. I used to meet new people without even trying and they would whisk me away on adventures. Now I'm just a mom. Just a patient. Just an unreliable friend. Just a boring ball and chain. I am a shadow of who I was. When I look in the mirror, I just see a face. No heart. No spirit. A face. No wonder my husband has no interest in me anymore. I'm fading. 

Well, what to do now? How do I fix this? Maybe I don't. Maybe this is what life is like after. After the wedding. After the kid. After the illness. Life after me.

A little down for the count.

Today was a down day, pain wise. In chronic pain circles it would be an Amethyst day. That is a scale concerning purples (which incidentally is the color of fibromyalgia) and is called the Purple Pain Code. The scales goes from ligher to darker like this…
(You can read more here.)

LILAC -Light
MULBERRY – Medium
AMETHYST – Awful
LMA – Leave me alone!
and I add LMTFA as an extra level– LEAVE ME THE FUCK ALONE!!! (Cause really? How do these people describe this pain without swearing?Geez!)
So today sucked ass in the pain dept and so,  not coincidentally, it was also a bed day for us. I am getting better at moving by the afternoon (so the whole day wasn’t shot) but by night, I was a lump. Luckily my husband was up to the challenge and took The Cute out to a park while I lumped around in bed with the iPad.
As an aside: Might I suggest that if you have a loved one who suffers from any one of the numerous pain conditions out there…and you are looking for a gift….pool your monies and get them a tablet (and if you can, an iPad). I mean it. It’s been my saving grace for these past few years of hell. Light enough to hold even on a bad day and full of fun that can be rocked from a couch or bed. Oh and get them hooked on Hidden Object Games as a way of distracting themselves from their situation (but that’s a post all to itself one day). I know they will thank you, and consequently, me…

A break in the clouds?

Finally a break in the clouds! The Cute and I both felt well enough to venture out into the world again! So a trip to our favorite coffee shop for ipad time seemed like a good low key start. So here I am blogging from somewhere out of house…it feels magical. And this depresses me just a little. Before baby, I was a wander bug, a gypsy. I had a house but I was never home. I hated staying in one place. Now a little coffee shop trip feels like an adventure. I have become that boring woman I never wanted to be.

I hate that I feel that way. Isn't there some moment where I'm supposed to feel content in my choices? Feel full from the glow of motherhood. The way society paints it…I should be in bliss right now. I should be spinning in circles with my child laughing in my arms…a smile of contentment permanently stamped on my face. But the reality is much more mundane. And frustrating. It's just so hard finding myself in this new world if motherhood and chronic illness. I always feel like I'm just hanging on instead of living. Holding my breath instead of breathing. Sigh.

It doesn't help that I have no support at all. Our families have nothing to offer and our friends have too much on their plates themselves. We never have a chance to date and I never have a child free moment during the day. I hope it changes a bit when he's in school. But then I will have to face my illness head on. I won't have the luxury of blaming my situation on The Cute. He's such a good excuse. But when he's out of the way… I will still have to fight the pain.

Backstory: Twelve years ago, my illness began…well, at least that's when the annoying parts showed up. It started with fatigue(sleep on the floor cause I cant make it to the bed kind)and a blurry eye…then the pain began to show. At first I thought it was some lingering issues from a couple injuries I had suffered but it got worse instead of better. Digestive problems, sleep issues, and weird anxiety followed soon after. Soon the list of symptoms grew to fit two pages. The doctors tested for everything and despite the occasional weird lab…nothing seemed to be wrong. They started suggesting it was psychological. I backed down in defeat and learned to just live with it. It was manageable.

Fast forward to pregnancy nearly five years ago…six months in, my hips were locking, my hands screamed with carpal tunnel, and sciatica claimed my every thought. My blood pressure jumped all over the place…first so low as to cause fainting problems and then so high that my right eyeball popped under the pressure. Yes, you heard that right…MY FUCKING EYE HEMORRHAGED! Holy batman, I was irritated. After the birth the list of symptoms grew and changed even more…weird heart issues, chronic colds/flus, worsening digestive issues, an extreme salt craving, extreme shoulder, neck, and lower back pain, gallbladder issues, muscle spasms, weird patches of numbness, cold hands and feet that are painful to the touch, and a raging heat intolerance that keeps our air conditioning at 70 permanently. And that's just the big ones! Needless to say, every morning is a lesson in motivational thinking.

After a horrible journey through the health care system, I was finally diagnosed with fibromyalgia just so that the doctors could stop thinking about it. But it never fit… Now after all that time, I think I have figured out what's wrong…dysautonomia with a side of mild undiagnosed autoimmune. Now I just have to get a doctor to take it seriously. I have PTSD from the bad experiences with Drs(and I don't use that term lightly….the travesty that was my first foray into this medical wilderness is long enough to fill several posts. I will tackle it another time). I have so much anxiety even thinking about starting this journey again.

Now at present…four and a half years later…I have a huge stack of bills from all the co pays and tests. A marriage that was rocked to the very foundation, and a beautiful four year old that has trouble understanding why mommy gets sick so often. It's changed every ounce of my life. I have literally had to relearn how to live my life in this new alternate dimension.

The worst part of all? The isolation. I look fine. Being an an ex-abused child, I have exceptional coping skills that leave me looking like I have it all together. But its a farce. I'm always one step from bed. And I'm always playing catch up. And even my husband can't seem to get it. He can't seem to understand the effort it takes to do the smallest things…like washing dishes or showering. He resents the cold apartment, the bills, the mention of pain. He, like most people, sees us on the same playing field. That a sleepless night for him is the same as a sleepless night for me. But it's not. A sleepless night for me can mean exceptional pain and the onset of a two week flare of severe flu like symptoms. He doesn't understand that I am constantly working with a deficit as the pain meds, that make life bearable, make life fuzzy and dull. And the normal every day stress that can make life a little difficult for him, make me feel like I'm dying. My heart rate soars to 140 and higher(I was diagnosed with intermittent tachycardia so for those of you about to suggest panic attack…it's not), my blood pressure drops to staggeringly low levels, and I suddenly have severe pain and dizziness. And that's just with the average argument. Real stress, like my mother's multiple hospitalizations or my recent gallbladder surgery, cause epic proportion melting that can last months. But I can't really blame people for their ignorance. I do look fine. And if I could walk away mentally from this nightmare, I would. As for my husband, I know he tries and he does love me… I just think that he can't handle the reality of my situation. If he fully allowed himself to understand, well, I think he would go nuts with worry. He hates to see me in pain.

As for me…I hate to see me in pain too. Sometimes I just hate me. And then I remember that this isn't my fault, that it's not fair but it is what it is. That it could be much much worse, and that I'm glad that it's me and not The Cute. But today I just feel frustrated and honestly scared for my future. That all the dreams I had are dead. That I will spend eternity in catch up mode. That this pain is forever …my heart starts racing…my hands shake…and then The Cute starts a “feet” fight with giggles and lots of “I like you, mommy” and I feel the panic subside. Who knows what the future holds…at least I have him now.

Wow… This post came out of nowhere. I was planning on writing about my illness someday…guess I just did.

 

Damn the Snot! (aka embracing the remote)

Woke up sicker today than the past week combined. Made for a tricky “Mommy” experience. I am not, by any stretch of the imagination, one of those perfect mommies that sets up a craft each day, makes perfectly organic meals, and takes a million adorable photographs in perfect lighting of all the wholesome fun we have each day. But neither am I the mom who bitches comedically about all the crap my kids do, all the chores I ignore, and how uptight we've all become whilst sipping on wine. Not that I don't enjoy reading their blogs. I do. I'm just not them. I'm somewhere deep in the middle camp. Or actually, if I'm honest with myself, I'm off some haphazard trail I've beaten out of the brush…I'm different. My middle name.

I digress… So anyway, our days are not full of schedules and predictability on a good day, but there is usually some kind of method to my madness. But not on sick days. I'm just out of commission(which happens more often due to having dysautonomia & an autoimmune condition). But The Cute has to eat. And he deserves love, attention, and cuddles. So I developed “Bed Days”. Whole days devoted to media, popsicles, cold drinks, hot tea, and books. My son loves those days(which is why the sick “no!” day flopped). We take turns picking out cartoons and documentaries to watch. We have “picnics” on the ground in front of the Tv. We take breaks to read books and play iPad games(mostly educational but fun). We cuddle the day away and talk about everything we see. It's just fun. And today was a great bed day.

I can feel judgemental eyes on me as I write that… But I really don't understand why. Just as I don't understand the guilt I feel. That I ignore. I chalk it up to social pressure because who doesn't want to eat popsicles and watch Tv when they're sick? Who doesn't want to play iPad games and cuddle in the covers? I don't get the fear over media and children. I love computers and Tv. And I parleyed them into my work. I'm an illustrator who uses Illustrator….along with Photoshop. As well as acrylic, watercolor, clay, colored pencil….you name it, I embrace it. I love my iPad and work on that too. So why should I deprive my son of all the fun? I also have a degree in psychology and nowhere in my many child development classes did I find anything to compel me to fear early media exposure. Except maybe content.

And that's why we don't have cable. I didn't want our family dealing with all the fucking commercials. I hate being sold to every goddamn minute. I also don't like being hooked on programs that force me to wait week after week as they unfold. I watch seasons in marathons over a few days if I like it. At times that are convenient. I don't want to be tempted to watch inappropriate crap in front of The Cute. I love Netflix for that. He has never watched glorified violence or sexual innuendo. He doesn't know the latest brands of cereal or toy. He only watches Tv in front of me(or my husband)so that I can talk with him about it, explain it, and ask his views. And with the iPad i have even more control. He knows I mostly read blogs and books on my iPad and he does too. We carefully choose the most amazing educational fare for him to play and limit his time a bit with pure platformers. And all I can say is that with our child, I see only benefits. He problem solves like a pro, can keep up with my husband in the Lego games, and can find his way around a computer like a 12 year old. He's only just turned four. We embrace it.

Of course, we embrace real life just as much…but then why do I feel like I have to say that? It's so interesting being a parent in a world made small by the internet. I feel so lucky to be able to look up a thousand solutions to any problem, a thousand activity suggestions at my fingertips in seconds. So lucky to be able to get a glimpse into other people's lives across the globe and learn from there parenting fiascos and successes. But there's the flip side…there's more pressure to be perfect. To be blog worthy.

And I don't know if I am, but that's not the parent I care about being. I just want my little boy to embrace life without the need to justify. I want him to love a kindle for the awesome innovation and convenience while still appreciating a book for the simple beauty of sliding his fingers on the smooth decadence of paper. I want him to love all genres of movies, books, and music without feeling the need to negate anything. I want him to look at life and take all the best bits and pieces regardless of new or old. I want him to question everything, appreciate and learn from the past, all the while enjoying, thoroughly, the present and future.

So my rambling point is that, although we never left the bed, we seized the day. As one should always do. Of course when we aren't sick around here, that means embracing the sunshine, learning gymnastics, and pretending to sail the seven seas. But on crappy days…sick days…I want him to learn that you can make the best of it too. Sure, you may have a leaky faucet for a nose, a sinus headache, and a sore throat….but that's just the perfect day for abject decadence. Hell, that's how all adversity should be faced,in my opinion…with fun, cuddles, and a fizzy, cold, chocolate soda…oh, and a massive amount of cartoons.