Life and Everyday

GIT ON THE STRUGGLE BUS…NOW!!!

I will be the first to admit that currently I am driving the struggle bus. There is plenty of room aboard if you wish to ride. There are rules.

1. I am in charge.
2. Sit down and shut up.
3. The radio will play at all times – I am in charge of the station!
4. I will sing loudly, and at times in a British accent if I am feeling cheeky.
5. My parking skills are questionable, at best, but you are not permitted to complain.
6. I reserve the right to complain about the driving skills of others, but you may not judge mine (it is my bus, if you don’t like it….get off!)
7. Cursing on my bus does not count (trust me, God and I have it worked out).

That being said, we are moving on. Some people classify themselves as glass half full or glass half empty kind of people, not me. I consider myself more of a, I am just really glad we had something to pour into the glass, kind of girl. I can hear some of you groaning, right now about being all negative. Well, shut up! This is my blog, and I am a realist. I call it like I see it. Life is hard folks, wear a helmet! I mean really, when was the last time poop came out smelling like roses?

There comes a point where you want to go shopping at 2am because if one more person asks you how you are doing with that pathetic look on their face and their head turned to the side, you just might vomit on their shoes! Yes, the kid is still ADHD. Yes, she is still dancing and playing minecraft as well. Yes, she throws a major fit now and then and tables get overturned and flood goes flying but she still is 12. No, I  still don’t have a job.  No, I don’t care to discuss that today thank you. I know I look tired, and I am well aware that is code for my dark circles I have dark circles and you are worried that I am going to go off the deep end. I am absolutely positive the little white lie was invented for me, “I’m fine, thank you.”

While I speak of driving the struggle bus, the one thing I don’t want is people feeling sorry for me. That is the last thing I want. I have people say to me over and over that they don’t know how I do it. How do I deal with my daughter’s illnesses and my own, keep up the house, get to the appointments, keep looking for work, find time to write letters and keep up with friends and family.   I started walking again, to release some of that stress that I have. If I am having a horrible day, I simply walk until I my hip and leg can’t take it anymore. And the pain it brings is a welcome one. My other answer; one moment at a time. In the morning I put my feet on the floor, I take a deep breath, I get up out of bed, and I put one foot in front of each other. Some days the only thing I can find to be thankful for is another day vertical, and that has to be enough. The thing is, I know it is. Face up, deep breath, tomorrow will be a better day!  It’s gotta be, right?

Then there is Jack.  Little Jack goes with me.  His little legs keep up with me when I walk.  He’s a trooper.

jack

 

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Life and Everyday

I always say……

Here it is….SEPTEMBER!!! I always say that I am going to write more. I am going to keep blogging more. I am going to post more and write my thoughts and blah blah blah…….
whelp…..as you can see from how long ago my last post was……I didn’t. I haven’t. And here I am again. But I’m not saying any of that this time. I am just saying…I am going to write whenever I can.
But…..September is Invisible Illness Awareness Month. At the end of the month will be Invisible Illness Awareness Week. So, I know that I will write a bit about what is happening in that arena.

pain cushion

Life and Everyday

UGH!! Pain….again…..

I admit….I did way more than I was supposed to yesterday.  I took some pain medicine before we started sorting and moving boxes down to the garage yesterday.  Mom came up and helped me carry boxes down.  Some boxes were relatively heavy, some were pretty light.  I think it was the up and down the steps that killed me.  Usually it isn’t that bad.  But with boxes, I can’t see where I am going.  I didn’t fall though.  woooohooo!!

pain cushion

This dx of Ehlers Danlos syndrome has me learning so many new things about what it is what it does what I need to do to keep myself from getting too hurt etc.  Add this to my autoimmune stuff, I feel like a walking mess.  I think I might spend some time writing down what dx’s I have been given and what is true and what is crap.  From mental health, etc. to all my general health yuck.  Then get all my allergies down, all my current meds down, try to get hospitalizations down.  That would be a huge problem because of the psych hospitalizations that I had when I was in my 20’s and early 30’s.  That time of my life really bit the dust.  ugh.

I am so sick of pain.  I wish and been praying to God would send a miracle for me.  To me and Katey….finding a place to live is pretty imminent right now.  my_joints_go_out_more_than_i_do_eds_awareness_button-r1eae097842c14de7b761d6361a49c299_x7sav_1024well, I need to go to bed before I fall asleep typing.  maybe my joints will stay in place more tomorrow.  night friends.

Life and Everyday

Rainy days and Thursdays

Man…..it’s been raining most of the day.  My joints ache so bad this evening.  I did take some pain meds, I hate doing that.  But Dr. Kristin would be proud of me since I don’t even take them as prescribed.  LOL

I have been doing a lot of thinking today.  About being a mom.  What it takes to be a mom.  What is the difference between a good mom and a bad mom.  It’s all relative, right?   I have been reading (on and off) writings from this woman, Rachel Macy Stafford.  Her website Hands Free Mama, is full of her life as a mom, the good and the bad….tears and celebrations.  Some have me in such tears that I can’t even read….I have to stop for a bit just to pull it together again.

Today I happened to be reading, Making your Loudest Voice Calmer & Your Truest Voice Stronger.  Before I had even thought about reading today, I had been thinking about last night’s meltdown.  I had yelled at K.  I don’t usually yell at her.  But I did, it even caught me off guard.  It dawned on me today that I had scared her.  That hurt my heart terribly and the tears rolled.  Back to the blog by Rachel.  When I read these words:

At my loudest, I was heard the least.

At my loudest, I felt the most pain.

At my loudest, I caused the most hurt.

At my loudest, my voice was most voiceless.

I felt like she had gone into my heart and mind and grabbed the words right out of me.  My voice has not been there for quite some time.  Before I asked Robert to leave, he told me I talk too much, I feel too much, I share too much.  So, began my time of sinking into myself and watcing and limiting what I say and to whom I spoke to. I began to get angry at him.  At myself for having feelings or emotions at all.  So when I yelled last night at K, I was stunned at myself.  K was scared of me.  She curled herself into the corner of her bed and just looked at me crying and shaking.

I don’t want to cry anymore.  I cry too much.  Lately I cry all the time.  K sees me cry.  She tells me to stop crying.  The other day, she said I don’t even try anymore.  I went to my bedroom and yup, I cried.  I lay in bed and cry until I finally fall asleep.   I called my psych doc today, talked to his nurse and told her I think I need to get off some of my meds.  All they do is make me tired.  All I want to do is sleep.  And as Robert says….I talk too much.  I went on and on.  My anxiety is so high right now.  Between K’s behavior and language and school stuff, the rummage sale next week (that I am not ready for), getting ready to move by June 1, and still not knowing where I am going to live…..I can’t breathe.  I feel like I am drowning.  I know I am trying my best but I just can’t breathe.  There is a huge pile of stuff in my living room where some stuff is marked and boxed and ready to go to my garage.  My bedroom is a disaster….I have yet to go through some stuff.  K’s room is like a tornado went through it.  Everywhere I look…..I can’t breathe…..I need out.  I want to get out and just drive away….get as far away as I can.

war in my mind

 

 

 

 

That is what it feels like these days.  War, battle, conflict, struggle…..fear.  I don’t know what is next.  I know tomorrow, somedays.  But anxiety, fear.

Life and Everyday

Long Days and Nights

Today is January 2, 2015 and it already feels like it should be later in the year.  I certainly doesn’t feel like only 2 days into a new one.  I wrote this letter to a couple very very good friends of mine at  LifeChurch in Oklahoma asking for prayer.  I am going to paste it here because I don’t want to retype it….too tired tonight.

Dear Friends
Don’t know if you are here the rest of this holiday week or will be back the 6th when Austin gets back.  I sent this email to him as well.  I wrote this in regards to the difficulties I am having with my 11 year old Katey. She has ADHD and it’s going through a lot of non constructive behaviors.  She had a change in medication , I think about 3-4 weeks ago and I think that it is making her more angry and aggressive.  She is threatening me, like throwing stuffed animals and barbies, etc. but it’s just getting worse for her even after we decided to change schools. I wanted you to help me pray for guidance and making good decisions in what the next step should be. I need some added support from my trusted long time support folks at LC.  I really don’t know what to do next.  Her mental health social worker will be coing tomorrow to spend some time with us and we will be talking about options and things that may help or not.  
Well since that phone call, I have gotten other news. Today my mom called me very early this morning. Oh the rollercoaster of emotion today. Overwhelmed to say the least. Need strong, bold, healing prayers for my nephew, Jesse, who was airlifted Mercy Hospital in Mason City early this morning. He has a long road of healing ahead of him. 
He was asleep on his girlfriend’s couch and woke up to her punching him in the face.  I have no clue what that was about.  He got very angry and left. He was also very drunk. One of his buddies was going to drive him out to my mom’s, but he was ticked and left anyway. Mason, his friend, tried and tried to get in front of him in his truck to get him slow down. But Jesse would keep passing him. Jesse was eventually going about 80 mph my mom said. He was just past my brother’s place (his dad) and just before Chelsea’s place (step-sister), when he hit s very deep embankment and then hit a pole just before the bridge at the beginning of the Deer Creek bridge. He was not wearing his seatbelt…then ejected sideways out of the driver’s side window of his truck. Mason was still with him. He couldn’t find him at first because Jesse was ejected from the truck. He called 911. The Northwood first responders came and then called the Mercy Life Flight to get him to Mercy Hospital in Mason City Iowa as soon they could. 
He has a severe flap/cut on his head all the way to his skull…about 200 stitches and staples, where his head hit the glass going through the door window. He broke his nose and has stitches across that as well. Gashes on his cheek and forehead that required stitches too.  He smashed his optical bones in his left eye but his eye is ok and intact.  He broke a bunch of ribs resulting in getting his lung punctured and totally deflated. He has a tube in it right now as it is still not doing what it is supposed to be doing. He broke 4 of those little tree like structures that come out of the main vertebrae, I believe they cover or protect the nerves. They are cracked and broken and the doctors don’t believe that they can be fixed. Jesse also broke his pelvis. Contusions on the bones in his legs. Lots of road rash. 
He will be in intensive care for awhile until they can get his lung to function again and his blood pressure to stabilize. My mom will be staying there with my brother, Jerry (Jesse’s dad).
—There was a praise in all this today too.  My niece Amanda, my brother’s daughter, has been estranged from all our family (by her choice) for the past 4-5 years.)  She has gotten married and none of our family went to the wedding.  But today…Amanda came right down to the hospital at 5am…right to Jesse’s side.  She didn’t want to leave him.  When Jerry and my mom came in, she gave my brother (her dad) and my mom (grammy) the biggest hugs and there were many many tears of  JOY!!!  (My One Word for 2015)  When my mom called to give me one last update this evening, mom asked Amanda if she would talk to me for a few minutes.  So I talked with her.  I cried.  I told her how much I have missed her.  I asked her about her job.  I asked how her new marriage was going.  I also asked if we could  get together and talk some more. We have another Christmas party down in Iowa this coming Saturday.  We are going to cut that visit short so we can head to Mason City to see Jesse.  Then we will travel back through my hometown of Northwood to stop at the restaurant to visit Amanda for a few.  I can’t wait to hug that girl!! 
I won’t be going down any sooner unless things get worse. I have way to much on my plate with Katey at the moment. Lots of things and decisions that need to be made soon. Her mental health social worker will be here tomorrow and we will be talking about what the next step will be. I do know she will be going through more testing and functioning skills also. 
So much stuff. I’m a tad overwhelmed and feeling a lot of body pain from my autoimmune disorders. My immune cells are fighting with each other and have landed in my voice box.  So I sound really funny with a crackly voice.  I will need to find some doctor to take do some extensive testing to figure out what autoimmune stuff is going on.
Thank you for praying for my family and me  We love you and thank you for taking the time to be there for for us.
Blessings.
If those of you that follow my blog are of the praying type…please keep Jesse and the rest of my family in your prayers.  Jesse has a long healing road ahead of him.  I got a call from my mom and he is still in ICU, his lung is still collapsed and the tube is still in place.  He is bruising really bad.  He is in tons of pain.  When the nursing staff moves him just a little he cries out in extreme pain.  He needs all the prayers he can get.  My brother does too.  His heart is breaking.  Thank you, my friends.
No sleep last night. I’ve been awake since the day before yesterday. I hope to get some sleep soon.  I have taken my night medicine and should be getting to bed soon.
I hope your new year is off to a good start.
Blessings and peace,
Jerry (L) and Jesse (R)
Jerry (L) and Jesse (R)
Life and Everyday

30 Days of Thankful??? What is that?

I want it

It’s been one of those weekends.  I have been seeing on FB all these folks doing 30 days of Thankful.  But I am having a really hard time this year.  Not sure why….but I have some ideas.

She always want something, but do not understand the concept of waiting or trying to earn the money to get whatever she wants.  Sometimes it’s not even in a store but here at home.  I want some candy.  I want that cookie dough.  I want, I want, I want……

For the past few weeks, I have been bombarded with “I need”, “I want”, and “Can you do this for me…”. I have not heard “Let me help”, “Can I help?”, or “What can I do?”. I have been angry at the world and everyone around me because of this. It has not been a good week to be in my head, with the slightest thing setting me off to an entire day of not-in-a-good-mood-leave-me-alone-and-stop-talking-to-me attitude. Yes, my attitude has been that big.

I just had that rhizotomy done on Friday afternoon.  I am having pain in my low back still.  I am trying the best I can gritting my teeth through the pain.  I feel like I keep doing and doing and there is nothing more I can do.  Sometimes I wonder if I can keep going all alone.  R was here this weekend, said he would help get the bikes in the garage and help put up the curtain rod in my bedroom.  But that didn’t happen either.

K doesn’t do much of anything but keep asking me for this and that.  Mostly junk that isn’t good for her.  I am trying to get the shitty food out of the apartment so that maybe this ADHD stuff might get better.  I am about at the end of my rope in dealing with her and the attitude.  I wonder if it is pre-teen/teen hormone crap or just the ADHD.  I know her medicine isn’t working well.  She is still picking at her skin around her nails. biting the skin off her lip.  Picking at scabs, etc.    I really don’t know what  to do anymore.  Consequences for her throwing a holy cow doesn’t work anymore.  Trying to talk to her about what is going on is useless.  I am failing.  Again, nobody wants to be in my head because they will want out quick.

She is starting a new school/program called YTP/Life Span.  They will come and bus her to and from the program.  They have therapy part of the day and then academics too.  They are supposed to be helping her learn coping techniques, social skills, etc.  I know she is 11 but she needs to learn how to relate to people in general.  I know she loves me.  I love her more than I can write here.  I totally hope this can help her, because I have no more in me.  I am tired.  I am spent.  I am in physical pain and can do no more.

I don’t even know how to take care of myself in all this mess anymore.  I just have to keep going and moving forward despite the shit in my brain, despite the pain, despite my own mental illness/pain.  Just keep going….

Life and Everyday

Still Awake

depression comes and goes

 

It’s 5:30 am and I am still awake.  I can not sleep….yet again.  This not sleeping thing is driving me nuts.  K will be up in little bit…..we are supposed to be going to church at 10:30.  I wonder if I can catch a few  winks before we actually have to be there.

I had taken my usual meds.  I usually wait awhile to see if they will kick in and make me tired.  But tonight…I guess not.  Shortly after midnight, I was feeling a lot of pain my back…so took a pain med.  That should have made me tired too.  But I here I am still awake.  This sleeping thing is for the birds.

So, about a week ago I had a bilateral epidural done in my low back.  It hurt some when they did the procedure but it actually wasn’t that bad.  I have been feeling better or able to do more since then.  I wake up or try to get up and I have a lot of stiffness in my low back and thighs.  So I do my stretches and then get out of bed.  Once I get moving around, it’s better.  I have twinges of pain if I move wrong or step wrong.  But at least now I can bend down and tie my shoes without so much pain that it brings tears.

I am so sick of pain.  I know I live with this chronic pain and other invisible illnesses.  If I listed them all, you would think I was crazy…..well more crazy then you already think I am.  LOL  The worst right now is the chronic pain and the lupus flare that is going on.  It’s like my body is raging against me.

I will write more later on these invisible illnesses stuff.

In other news……I am taking K to camp today.  She need to be there between 3pm and 5pm.  I think we will leave around 2.  It take a little over an hour or so to get there.  It’s called Lake Wapogassett Bible Camp in Amery, WI.  I am really excited for her to go.  I always loved camp.  I so want her to meet new friends and have a place where people will love on her unconditionally.  She really needs that before the hectic weeks to come before school starts again.  I think I will be the one with tears when I leave her there.  She will be gone until Friday.  I go pick her up after lunch.  I think my mom might come with for the drive up to get her.  Don’t know for sure yet.

gods got this

Yup.  God’s got this too.  There is so much I need to remember when I am freaking out with health issues or having so much anxiety I can hardly breathe.  I keep saying lately that I wish my faith was stronger.  I do.  I haven’t found my place yet.  I haven’t found a home church yet.  We are planning to go to Our Saviour’s Lutheran today.  It’s one of the bigger Lutheran churches here.  I read that during church some of the kids that went to Camp Wapo are going to talk about their experiences there.  The church sent kids to camp a week ago, I guess.  If we had been going to this church on a more regular basis, I think K would have been able to go with the kids from church.  My goal is to start going weekly.  To try to become involved more and get K in Sunday school and doing stuff with the youth.  She will be in middle school this year and they do more stuff than when she was in elementary school.

Anyway, I need to keep writing….maybe it will help empty my mind so that sleep might come more easily.

The sun is rising.  The sky is pretty this morning.

I hope you all rested well.  ♥