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

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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.

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

When will it stop hurting?

When will it stop? I’m not sure.  I don’t think that pain will ever go away.

This morning started out like most Mondays, up at 5:30 am now, since K gets picked up earlier to go to her new school.  Got her ready and out the door.  I sat down on the couch and YOWZA!!  Pain surged through my body.  From my low back to my neck.  Every bone, muscle, fiber of my being hurt like it had hot stickers poking me.  I settled into the couch for just a bit, took my morning fistfull of medicine and just tried to relax.  I needed to be at the middle school to gather K’s things from her locker and turn in books from the library and her teacher’s room.

As I finally get my arse out the door, those damn steps….oh those steps down to the door.  My low back yelled at me like mad.  Made it to and out the door.  Then I see the garage door….oh good Lord, why today?  Why does everything have to hurt today??!!!  OK so…..in the car, crank the heat.  It’s cold out…oh so cold out.  Stupid Minnesota first days of winter.

Made it to the middle school.  Talked with those I needed to, almost lost it….tears and more tears.  But I made it.  Back in the cold and out to my car.  Dang, so not ready for cold.  Give me another few weeks to get used to this.  I’ll be better.

Then I made the decision I was going to go grab a few groceries at Weird World…I mean Wal Mart.  Am a freakin crazy??  I guess so.  I had to fly through the store because a social worker was coming to my place at 11am.  Walked so fast that I thought my feet were going to fly out from under me.  When all done and out to my car…..tears….tears…and more tears.  OMG!!  PAIN!!  How was I going to get these groceries up those stairs?  How?  How?  I cried and cried.  All the way back to the apartment, I had tears.  I thought about leaving them in the trunk but I couldn’t.  So, I took as many bags as I could handle at least semi-less-painfully.  Then the stairs……I thought I was going to die!!!  I got them up the stairs and opened my door and then literally dropped them on the floor.  Then back down again…..same feeling as previous….same pain as previous only more thumping in my body this time.  Push through like I always do…..up the stairs….open door…drop groceries on the floor.

Tears….I can’t just sit.  I have get them put away.  This lady will be here in a half hour.  Damn.  Tears.  One by one I get everything put away.  Sat down once again.  I don’t want to do it…but I did.  I took a pain pill.  I hate doing that!!!  Eventually the pain lessens.  The doorbell rings and she is here.  Long long chat and oodles of papers to sign.

So after all that “stuff”, I laid down and slept.  I thought I had set my alarm…..around 3pm, K comes walking in.  She is home from school.  OMG…..I missed my appointments at the ED clinic.  Oh they are going to be pissed at me.  *shakes head*

I don’t know why I get so angry when I lay down and rest some.  For years, I have pushed though all this pain and just do what I had to do.  It didn’t matter how crappy I felt, I just had to keep doing and going and being.

K is finally in bed.  I am still so tired.  I haven’t talked to Robert today except a few texts.  But guess what I am doing?  oh yes….a few loads of laundry.  And you know what else?  yup…still in pain.  Bones ache.  I know it’s just the coldness of winter coming on.  I will get used to the cold.  I always do.  The first month or so is hell for me though.

What was I saying?  oh yeah, still have pain.  I suppose I will take another pain pill.  Just so I can get through until I take my night time meds.  I have one dim light on and the tv.  Watching Dancing With the Stars.  Watching these stars dance, so nimble and effortless and beautiful.  I was and will never be a dancer.  I can’t move like that.  K is a dancer.  I love to watch.  Again some sadness, realizing there are so many things I can not do.  Still, they float on air…..

Sometimes I feel like I just float back up to the decent-ness of life.  Am I thankful?  Yes.  I think so.  This year I am not doing the usually 30 days of thankful mainly because it’s been such a hard hard year for me.  (which is probably why I should be doing it)  I am thankful, but it’s so hard to be thankful with so much other stuff happening that is not good.  I have tried to be more thankful.  I have all these shoulds in my head.  So I guess I will stop here.  Tomorrow is a new day.

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.  ♥

getting unstuck

For months I have said that I need to make some serious changes.  I am done with surgeries, finally. I have healed up pretty well. I have gotten the doctor’s ok to start doing more exercise. I am also doing a lot of PT also. They are giving some good ideas to be exercise aware for pain and swelling and such. I am so glad to have the OK to get back in the swing of things. My hand is still in a brace for the next month, but I can take it off when I go to water aerobics.  This is my getting unstuck from being pretty sedentary for months.

beneath the pain

I have many other areas that I am going to work on getting unstuck.  I will write more posts about the following when I get my thoughts in order and what I am going to do or am doing to get unstuck in that area.

1. I am working with Aimee at the Emily Program (dealing with my eating disorder).

2.  Figure out my money (or lack of) situation.  Figure out how to make and use a budget….and follow through.

3.  Do more incorporating my faith and also meditation into my life.

4.  Getting my plan started in regards to starting Metro State this fall.  Get the reading/writing assessment completed.

I think I have a decent place to start here.  I have to quiet my mind now that my pain level has decreased from way about 10 (the worst) to a manageable 4-5.  Only taking a muscle relaxer when I need to.  Also got a gel that is supposed to help with my low back pain, lidocaine.    I think it’s more manageable right now.

 

 

 

no nothing

I went to the spine doctor….the next one that was supposed to do the rhizotomy.  But he said he didn’t think that I needed to have it done.  He thought I had an infection between my vertebrae.  So I went in for some bloodwork.  The office called me and no infection.  Now what?  I feel like I am still on that road of doctors throwing me from one to another.  I know where my pain is right now and they still don’t now what they are going to do.  He mentioned wanting to send me to a pain specialist.  I am so sick of going to different doctors.  This is just stupid.  I don’t know what is next.  All I do know is that I need to find some relief from my back pain.  I can’t go on not sleeping and hardly being able to move.  This sucks.

My finger is healing ok.  I get the stitches out next Wednesday.

I start physical therapy on Monday.  I hope they can help me.  I know it’s going to hurt for this too.  But I have to do something.  Doing nothing isn’t helping.  I think I am going to do some searching on the net for some ideas.  Maybe some other folks with similar things going on can offer some ideas.  Something I haven’t tried yet.

There is always hope, right?