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

 

Who starts in the middle?

pofkokydc0

Obviously I do!  (sarcastic laugh)  If you know me, you know why I laugh.  *wink*

you-dont-start-at-the-top-if-you-want-to-find-the-story-you-start-in-the-middle-because-its-the-people-in-the-middle-who-do-the-actual-work-in-the-world

AMEN!!!!!

kidding kidding kidding.  If I had known what to write I would have started it a couple days ago.  But my blog has become a bit of this and that and who knows what.  Originally it started as my journey with weight loss when I had my bariatric surgery in 2011.  That was a true success.  I have lost 154 pounds total since starting my weight loss journey.  I will get on the ball and put my heaviest picture up here and then I will put up my current picture too.  I just don’t have my computer next to my printer at the moment.  Alas, you guys will have to wait.  I am still not where I want to be but I will get there THIS YEAR!!!

Anyway, this blog also has become a blog about pain, my pain, my daughter’s pain, religion, life, ex’s, new bf’s, ex’s, etc.  There really hasn’t been a direction for this blog at all.  Except in the name:  JOURNEY TO WHOLENESS

My goal, yes, is to become whole.  I have always felt fragmented and in pieces.  Never really part of a whole person.  There are bits of me here and there and nothing ever really seems to fit.  I have these diagnosis’ and my daughter fits in this whole of me somewhere and she struggles so much sometimes.  I really want to try to put it all together and I certainly know that it’s going to take me more than just a few blog posts to figure this all out.  DUH.   lol

So, if you bear with me along this journey, I think what my blog to wholeness will be is just my life.  Putting it all together, piece by piece.  Bit by bit.  I am sure there will be some rant and raving and some bs’ing about some doc who got it all wrong or maybe got it sorta right?!  There will be some religion or lack of religion just to say spirituality and wholeness or goddess or something bigger than myself holding me and K all together.

If you have some ideas of what you would like to see me write more about in regards to my diagnosis’s or K’s diagnosis’s or life or spirituality or pictures I can take when I go places, please please please let me know.  This blog is as much for you as is for me and K.  I want to share my world with you all.  Tell me what you want to hear about ok?  I will try to write on that too.

Peace love happiness joy sparklies twinklies and sunshine on you……..<3

oh….leaving you with a bit of Charles Barkley wisdom

quote-you-can-t-start-a-diet-in-the-middle-of-the-week-that-s-just-stupid-charles-barkley-209257

30 Things About My Invisible Illness You May Not Know

722629f4aa847cc715c213f8207bd724fight for my health

 

30 Things About My Invisible Illness (AKA: Ehlers Danlos) You May Not Know

1. The illness(s) I live with is: Ehlers Danlos – Classic and Hypermoblility types, Sjogren’s Syndrome, Fibromyalgia, and Lupus
2. I was diagnosed with it in the year: EDS in April 2015, SS in May 2015, Fibro 1994, and Lupus 2002
3. But I had symptoms since: varying symptoms since I can remember.  Usually blown off to being klutzy or clumsy or just awkward.
4. The biggest adjustment I’ve had to make is: having the people I care the most not understand what is going on.
5. Most people assume: I’m making excuses or that I am trying to get out of something when really I can’t do whatever it is that is being asked of me.
6. The hardest part about mornings are: Making sure my daughter is up on time and ready and fed and all that and I haven’t lost my mind in the process.
7. My favorite medical TV show is:  Chicago Fire
8. A gadget I couldn’t live without is:  Those handy squishy things to put over jar lids to help me open them.
9. The hardest part about nights are: SLEEP
10. Each day I take _11_ pills & vitamins. (No comments, please) RIGHT NOW IT’S 11 (TOMORROW I SEE THE DOC)
11. Regarding alternative treatments I:  I absolutely LOVE hot stone therapy.  I can’t afford it but once in a blue moon.  I think most alternative therapies do work for me.  You have to be rich to continue with them though.
12. If I had to choose between an invisible illness or visible I would choose: at this point, I don’t know which I would want…neither!
13. Regarding working and career: I miss working.  I have never really had a career since this hit me so early on in college.  I never got to experience a career.  That makes me terribly sad.
14. People would be surprised to know: There are still a lot of things I would love to do if given the chance.  If able to get pain under control and legs/hips = ability to stand or walk better
15. The hardest thing to accept about my new reality has been:  not knowing from one day to the next how my body will be responding to the weather, or the temperature or the light or sound, etc.
16. Something I never thought I could do with my illness that I did was: learn so much about it.
17. The commercials about my illness: I haven’t seen many here in Minnesota
18. Something I really miss doing since I was diagnosed is: running around, playing hard with my daughter, riding bike
19. It was really hard to have to give up: bike riding
20. A new hobby I have taken up since my diagnosis is: lots of walking
21. If I could have one day of feeling normal again I would: go camping and hiking, canoeing, boating, spend the day with my daughter out in the woods just having adventure after adventure
22. My illness has taught me: slowing down is ok
23. Want to know a secret? One thing people say that gets under my skin is:  at least you are still alive with your daughter.
24. But I love it when people: take time to laugh and joke and treat me like myself, like nothing is wrong.
25. My favorite motto, scripture, quote that gets me through tough times is: …I PRESS ON…..
26. When someone is diagnosed I’d like to tell them:  It takes a little while to adjust, but once you get your bearings, friends gather, new and old, and we stick together like glue and we gotta lotta living to do.
27. Something that has surprised me about living with an illness is:  there are so many supportive people that live far away that are just as supportive as the ones close by.  I love them just the same.
28. The nicest thing someone did for me when I wasn’t feeling well was:  She read to me.  She read me stories, all sorts of stories.
29. I’m involved with Invisible Illness Week because:  Invisible Illnesses need to be made aware of.  There are so many different kinds and so many different ones that don’t get the feedback that others do.  Take time to read about invisible illnesses.
30. The fact that you read this list makes me feel: blessed and honored.  Thank you.❤

Joy, revisited

 

joy

Really? Really?  Really. Is that what joy is supposed to look like? Cuz my joy hasn’t looked anything like that all year long.  Not even one iota close. Maybe wish it had, maybe it would have felt like the earth moved and the world changed a bit for me, yes, for once, for ME! But nah,  it didn’t.

But what did my joy feel like this year?  Was it quiet? Was it rumbling? Was it at least happy? Let me show you a few pics of what my joy felt like…..

FB_IMG_1446530636107

nothing like mom and daughter bonding! 

 

FB_IMG_1446530820941

Getting ready to celebrate K’s 12th birthday!

FB_IMG_1449207443597

Our new dog, Cooper! 

myFacebookPhoto_635830533606430500

Messy hair and out to eat! 

These are the celebrations of joy we had. None were really jump out of our skin into the air moments, and I know it’s not all of our joyful moments of the year. It’s just few that K and I have had along the way. I can tell you that there were definitely more joyful moments in the latter part of 2015 than the beginning because big changes happened in the middle of the summer for both of us for the BETTER!!!! Let me tell you, that made a world of difference in the joyfulness of our lives. More on that when I’m on my laptop to type. But for now, more to think on.  What does joy feel like to you? Like that first pic? Or something in between?

~Julie

Thinking back over 2015

My word for this year was JOY. hmmm.

When I was young and going to Bible school at DeerCreek Lutheran Church, I remember learning that joy represented:

J= Jesus

O= Others

Y= You

That was for us to remember the order in which we pray and give thanks.  Jesus first, then for others,  then yourself.  I still think that is a pretty cool formula!

I want to do more thinking and writing on this subject of joy and what it has meant to me throughout this past year. I will do more in the coming days. 💜

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

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.