Life and Everyday

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. ❤

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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

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