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.

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Life and Everyday

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

Life and Everyday

Emotions, a death, and loneliness

3750-im-not-always-strong-but-i-keep-trying

So many crisis type things happen and I get so overwhelmed and then sleep to start it all over again the next day.  I am hoping they all calm down soon.  I can’t keep going at this pace.
Although, crisis today was my mom calling me at little after 6am to tell me that my uncle had passed this early morning.  My uncle Russ and aunt Alouise are my godparents.  Also my mom and Alouise are sisters and as close as close could be.  As kids our families did a lot together and spent time camping and baking and all sorts of other stuff together.
When mom called and said this to me, I was in the instant numb mode or disbelief.  I knew he was sick and he didn’t want any treatments for anything and no doctors.  He lost his will to live.  This made me incredibly sad.  I have been at that point in my life of feeling like losing my will to live, not by sickness but by depression and anxiety and fear.  But I have chosen to live.
Katey and I live.  We chose to be and do living.  We are about going places and learning new things.
Then bump in the road again.  Katey is struggling so much.  She was diagnosed with ADHD and generalized anxiety disorder 3 years ago.  Her behavior was getting out of control and her mouth too.  I had to make that hard decision about medication or what?  So, I talked to some friends and decided to see what medication could do for her.  The doctor I chose for her to see turned out to be an amazing man.  He tried her on an ADHD medicine and after a few weeks, it was just not right for her.  He talked with me and her teachers.  We tried another and that was BINGO.  Katey had done 360.  She was the loving and kind and calm kid that I knew years ago.  Meltdowns to very few.  Maybe one or two every couple months.  It was awesome.
Then this doctor left to take a position elsewhere.  Sadness.  The transition between 4th and 5th grade has been the worst for her and for me.  I have tried everything I can think of to help her in this.  The EBD teacher, school counselor, her mental health social worker, in home worker ….all of us…trying to come up with something to help her feel more successful.  But it didn’t work.  Her behavior escalated.
Finally, talking with her mental health social worker, I had made the huge decision to look into the YTP-Life Span School and therapy.  That is where she goes to school now.  It’s in Burnsville.  They pick her up and bring her home.  She has therapy part of the day and academics part of the day.  It’s only been a couple weeks but she is learning more about boundaries and what is appropriate.  She is learning about self control and expressing herself with out destructing.  I feel like I have failed her because I haven’t been able to teach her these things myself.
Being a single mom is so very hard at times.  It’s just been her and me since the get go.  I feel so lost.  I feel like I don’t know what to do.
I have met an awesome man a few months ago.  Luckily they get along great.  He backs me up and helps me when I need it.  She is listening more to him as well.  He is so calm and just living moment by moment.  He loves the Lord and makes that known to her and me.  He is a recovering alcoholic.  Maybe that is where he has found that serenity.  He helps me to stay focused on what matters most when I start to get so overwhelmed I don’t know what to do. I feel blessed to have this relationship in my life.
All this said…..I still feel lost.  I still feel alone.  I still feel like my faith has been rocked.  I want to be the best mom for Katey.  I want to be there for Robert too.  I need to figure out how to be here for me too.  But I am alone.
This is where it is right now.
I would still like to meet you and talk more.  Maybe you have some more ideas?
It’s Thanksgiving and Christmas and I don’t know how I am going to figure out how to make money stretch to the end of each month.  I worry that I am going to let both Katey and Robert down.  (Robert is currently in a sober house in St. Paul).  It’s just my income.  And time.  Again…I am lost.
beautifully broken
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.  ♥

Life and Everyday

Thoughts on women with ADHD

I recently found this list of questions regarding screening for ADHD for women.  You can find the original post at ADD Jouneys with Sari Solden.  It won’t let me post her link here but it’s a good page.

Screening checklist for those women who suspect
they may have Attention Deficit Disorder

The following is a list of characteristics that often describe the challenges faced by women with ADD or ADHD. Everyone has these kinds of feelings at some time and to some extent. Do you have them more severely? Have they been present for most of your life? Are they giving you an overwhelming sense of difficulty in achievement, self-esteem, relationships and mood?

  • Do you feel bombarded in department stores, grocery stores, at the office or at parties?
  • Do you often shut down in the middle of the day feeling assaulted?
  • Is time, money, paper or “stuff” dominating your life and impacting your ability to achieve your goals?
  • Are you spending a majority of your time coping, looking for things, catching up or covering up?
  • Are you avoiding people because of all of this, hiding big chunks of yourself out of shame?
  • Have you stopped having people over to your house because of your shame at the mess?
  • Even though you are educated, have you never learned to balance your checkbook?
  • Is it impossible for you to shut out nearby sounds and distractions that don’t bother others?
  • Do small requests for “one more thing” put you over the top emotionally?
  • Do you often feel life racing out of control, that it’s impossible to meet demands?
  • Do you start out each day determined to get organized?
  • Do you feel like a couch potato or tornado, at either end of a deregulated activity spectrum?
  • Do you feel that you have many more ideas than others, but you can’t stop them or synthesize, organize or act on them in an orderly way?
  • Have you watched others of equal IQ and education pass you by?
  • Are you starting to feel despair of ever fulfilling you potential and meeting your goals?
  • Are you clueless as to how others lead a consistent, regular life?
  • Have you been thought of as selfish because you don’t write thank-you notes or send birthday cards? Are you called a slob or spacey? Are you “passing for normal”? Does it feel more and more as if you were an impostor?
  • Is all your time and energy taken up with coping, staying organized, holding it together, with no time for fun or relaxation?
  • Are you starting to feel despair of ever fulfilling you potential and meeting your goals?
  • Are you clueless as to how others lead a consistent, regular life?
  • Have you been thought of as selfish because you don’t write thank-you notes or send birthday cards? Are you called slob or spacey? Are you “passing for normal”? Does it feel more and more as if you were an impostor?
  • Is all your time and energy taken up with coping, staying organized, holding it together, with no time for fun or relaxation?

I have personally found that I relate to more of these than I thought.  I don’t know if it’s my bi-polar junk and anxiety disorder or what.  I guess it’s a good thing to talk about with my psychiatrist.

I just wanted to share.

 

Life and Everyday

Rhizotomy time

Yup…what  word huh?  So I got the results of my MRI back today.  I have a “tremendous amount” of arthritis in the last two vertebrae next to my tailbone.  Soooo….

This is what I will be having done…….. rhizotomy (/raɪˈzɒtɵmi/ ry-zot-ə-mee) is a term chiefly referring to a neurosurgical procedure that selectively destroys problematic nerve roots in the spinal cord, most often to relieve the symptoms of neuromuscular conditions

The terms rhizotomy and neurotomy are also increasingly becoming interchangeable in the treatment of chronic back pain from degenerative disc disease. This is a procedure called a facet rhizotomy[2] and is not a surgical procedure but is instead done on an outpatient basis using a simple probe to apply radiofrequency waves to the impinged pain-causing nerve root lying between the facet joint and the vertebral body. Such radio frequency nerve lesioning results in five to eight or more months of pain relief before the nerve regenerates and another round of the procedure needs to be performed.

 

Who wants to go with me?  I am a bit freaked out!!!

Life and Everyday

Day 5 – I am Thankful

day-5

 

I am so thankful tonight for great customer service at Verizon Wireless here in Hastings MN.  The guy I talked to tonight was absolutely wonderful and patient with me when I couldn’t figure out what I was trying to say.  I couldn’t get the words to come out right.  But he figured it out and was patient and helped me figure out how to fix my problem with my phone.  AND, helped me get my new home phone arranged to be hooked up for K.  I’m not prepared to give her her own cell phone yet.  So a home phone will have to do for now.  awwww mean mom  LOL

But huge thankful all the wonderful customer service people out there.  I know I have many friends who work in this field!!  I know you are just as wonderful!  ♥