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.

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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.

Another meltdown tonight

parkerpq1K had another meltdown tonight. Enough that it brought the manager down again. Her meltdowns are warranting disturbances to neighbors which are now being told to the manager……now I understand why the manager brought me the letter with big letters that say we need to be out by June 1. K is just causing too much noise to the neighbors. They think she is hurting me. The last one when the police came, she had hurt me.

Anyway, I have been thinking a lot about how I am dealing or not dealing with her behavior. I have asked her what she really needs from me. What can mom do to make this easier for you? She tells me, “I don’t know”. So I keep embracing K which does not mean that I am ignoring her misbehavior. I am trying to tailor how I respond to her behavior in a way that makes more sense to her. But this is also my hang up too. I run out of effective ways to respond. Her reactions are like fireworks and the explovsives are everywhere. But I am trying.

I went to my therapy today and as I was talking, my therapist said something to me that was like a dagger in my heart. He said to me,”you give up your dream of who K should have been and accept her for who she is”. super mom He told me that I will be able to match my response to K’s behavior and then become an effective parent.

Acceptance. I understand but I had never realized that I had always wanted to much more for her. For her to be different, like my friend’s daughters. Stab my heart. I cried and cried and cried. How do I even accept myself? Not just with this, but just finding out that I have been diagnosed with a genetic disorder that doesn’t have a cure. I go in for an echocardiogram tomorrow morning (the 7th). I am scared. I am a single mom. I don’t have anyone to be with me. I have been trying to to increase my support system. But I work on K’s first, make sure she has everything she needs first. Then first in my own stuff. I am working on controlling my emotions right now because K sees me cry, and she worries too much. She tells me that I’m not trying hard enough.  Trying what not hard enough?
I don’t know what to do now?  Control my emotions.  That is what I do.  Breathe.  Keep my mouth shut and listen.  Meditation.  Breathe.  Don’t talk.  Listen. Clench my teeth, but do not say a word, just listen.  But always tell K that I love her, no matter what, no matter where.  Always and forever.  From the moon and around the sun….in the stars and back again.  Patience.  Smile.  Breathe.  Listen.  Smile.  Love her.  Just love on her.more patience

Where you been??

just tired

So much stuff has happened since last time I have written in my blog.  New dx’s for autoimmune stuff, genetic stuff, just helath crap in general.  I just hurt from the inside of my bones out.  Katey is doing  ok.  She got out of the adolescent mental health unit last week.  Her ADHD and control issues and stuff are just that….out of control.  But I think the hospital stay helped her to gain some control back.  She’s only 11 and wants so much control, especially here at home.  I feel like such a failure.  All I want to do is cry.  And she knows that I am a wimp.  She knows that I don’t always follow through.  She knows that I am in pain.  She knows that she can sometimes take advantage of me.  I want someone to teach me how to be strong even when I am in intense pain.  I have yet to find that.

I made a list of all the things I need to do tomorrow.  Just like I always do.  I don’t have anything on my calendar tomorrow, so I should get most if not all of it done.

28 days…..that’s all I have left here at this apartment.  I am moving and I have no clue where I am going.  I don’t have a place to go, to live.  I haven’t found a house, apartments, anything.  I stay up at night scouring the net.  It’s always the same.  Nothing I can afford.  I don’t want to live in the scum parts of the city.  I don’t want to live in dangerous, gun infested, gang infested parts of the city either.  I am so alone it sucks ass.

Yes, feeling sorry for myself once again.  Big fat pity party once again.  Just trying to figure it out.  Going to figure it out.

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)

small things, Big Difference – One Word 2015

I do not like resolutions and or huge goals….why? Because I feel like I will fail before I even start. So, while listening to Pastor Craig Groeschel speak in this video “small things, Big Difference”, I have learned that I need to figure out “what do I want most over what I want now?” (good question, eh?) 1 Cor 9:24-27 (go read it), we are running to WIN!!! *the Eternal Prize*.  We need to run with purpose. So….What do YOU want most??? YOU! Yes YOU!!

  1. One Word: Small beginnings
  2. My One Discipline: thoughts, think on these things. A sentence, Bible verse(s), something to help you remember your ONE WORD
  3. Build others up: Use Godly words. The power of God’s disciple, being faithful in the small things. Seeing the small things that maybe no one else sees. Power verses to remind you of God’s work in you.

Seek small things
Seek discipline
Seek God for One Disciple
Use that forward momentum
Have an impact in this world!!!

2015:

My one word for this coming year is JOY.

The reason I chose this word is because in 2014, I hadn’t felt much joy.  I had a very hard time finding much joy.  It wasn’t that I was sad all the time, I just didn’t feel content.  My head was constantly going with all the things I thought I “had” to do.  In the meantime, I had numerous people ask me, “what brings you joy, Julie?” After thinking on this question for quite some time, I couldn’t even come up with a list on one hand. Then I did some praying and meditation, JOY was the first word that popped into my head. I will be working hard incorporating more joy into my life, in all areas: relationships (family, friends, professional contacts, etc), college, and my college work, volunteering, writing, looking for work, and my adventure in locating new housing.  I will attempt to find joy in just about anything and anyone I come into contact with.  I have my small notebook ready to go.

My power verses:    I want to memorize these.

Psalm 98:4 (NIRV) Shout to the Lord with joy, everyone on earth. Burst into joyful songs and make music.
Philippians 4:4 (NIRV) Always be joyful because you belong to the Lord. I will say it again. Be joyful.
Psalm 86:4 (NIRV) Bring joy to me. Lord, I worship you.
John 15:11 (NIRV) I have told you this so that my joy will be in you. I also want your joy to be complete.
Psalm 94:19 (NIRV) I was very worried. But your comfort brought joy to my heart.
2 Timothy 1:4 (NIRV) I remember your tears. I long to see you so that I can be filled with joy.

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