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Hello wonderful human beings.
My question for you today is a simple one. Although I try to keep things upbeat, I have learned through a lot of trial and error that in order for me to heal to the best of my ability, I must first accept my present situation and go from there. So, my question for you today is, “What has been the most difficult thing for you to accept on your chronic journey?”
~ Thank you for stopping by to visit and your willingness to share part of your journey.
Maybe this poem explained how I felt 20 years ago……..
Who’s Left to Row the Boat
The storms are too many to count
Emotional lows had weathered me out
Her journey with MS was a struggle
How much lower could our lives sink
After fourteen years of our battles, I suffered a Stroke
An ambulance came, my brain was in a boat
Floating out to sea, overboard and panic-stricken
I wasn’t swimming, barely awake, and drifting
I had fallen, nothing was working, and not talking
She’s crying, I’m sobbing, my heart is dying
And who’s left to row the boat, I’m thinking
I was jabbed with a needle and silently sleeping
I awoke a day later, in hospital, feeling wasted
My face was limp, mouth parched, was that death I tasted
My mind was active, I thought, where is she
I knew I was bad; the room was all blurry to me
Strong anxieties had set in, I needed to know
Nurses came to me, I pleaded, I wanted to go
“Help me to see her, just give my bed a tow
Please let me go, before I’m covered in snow”
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oh my goodness Ivor! My heart just broke as I read your words………so much sadness, passion, brokeness, exhaustion, fear, love……….you covered it all. I just wished it wasn’t true. Thank you for sharing this…..I appreciate you and your insights and heart. The love you have shown your wife is inspiring. God bless you.
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I’ so please you understood all my complexed issues that I went through…. the moral to the story is…… I survived, and here I am, alive and doing the best I can…..
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I am not sure if I could understand all the hell you went through Ivor, but I could sure feel it in your words………..I am so happy you are here! 🙂
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Yes… It’s good for me to share my story…. hopefully my words may help overs who have been suffering…. xx
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I appreciate you sharing………
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Hi Wendi, firstly love that pic, so cheerful, it’s taken in Turkey in the Goreme Valley, been there 🙂
Even more than the pain was the loss of dependence … we spend a lifetime trying to be independent and then suddenly I had to ask for help with even with the smallest things!
Suddenly I felt 150 yo and so helpless …
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🙂 of course you have been there! I love it, you have been pretty much everywhere……..is there a country you have not visited that you still wish to go to?
you are so right Kate, we do spend a lot of time trying to become independent and then boom! we need help. Thank you so much for your willingness to share this, I really appreciate it.
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many countries I haven’t been to, but I only return to a few to catch up with friends … over the exploring!
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🙂 sounds wonderful….
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oh and to teach meditation, so that’s mainly Asia 🙂
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sounds so amazing.
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they pay my basic costs, fares, food, shared accom, but I work 12 hour days 6/7 … but yes it’s rewarding teaching 150-250 people at a time 🙂
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oh my goodness, that is a lot of hours working!
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yes and they get all the fees … but hey it’s personally rewarding!
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🙂 that is very important! 🙂
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My chronic illness, fibromyalgia, isn’t anywhere near as bad as others’ illnesses, but the fatigue has been the hardest to accept. The knowing that I cannot do what I want or need to do every day. The necessity of resting/sleeping almost every afternoon. The need to pace myself. I’m retired now, and I have the time to pace myself and to rest, but it was particularly difficult when I worked full time.
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Thank you so very much for sharing! Fatigue is such a difficult thing to deal with as we just can’t force our bodies to keep going as they literally can’t. I think that is beyond frustrating when we have things that must get done and we just can’t do it………I hope today was good to you and you are taking great care of yourself!
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That I’m stuck emotionally.
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this is a very frustrating place to be! sending you love and peace Ruth. Thank you so very much for your willingness to share.
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Fatigue has been to most difficult
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fatigue can be such a brutal side effect of chronic illness…….and something that is difficult to explain to someone who says, “just drink a cup of coffee, that will wake you up.” thank you so much for visiting and commenting, I appreciate it.
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Wendi, during those several years spent in bed sick, (off and on) not knowing exactly what was wrong was hard enough. But the hardest part for me was the judgement, lack of understanding received and some not being there for me, as I had been there for them. When a person seems to stay sick, a lot of times it can lead others to believe they are just trying to receive attention. We all need to strive to be more sympathetic to our fellow man.
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Renee, you have brought up such an important point!!! Those who have not lived this have no idea just how much we want to feel better and live a “normal” life. Others can be so extremely judgemental and down right cruel with their behavior and comments. I am so sorry you were let down by those you had helped……..I know it is heartbreaking. Thank you so very much for visiting and leaving such important comments.
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I know it sounds like a cliche, but “being misunderstood”…..
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I completely understand those words Tamara. Thank you so very much for stopping by and commenting. I hope today is treating you well and you are blessed with a smile or three!
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HI Wendi, I hope you are well. As the mother, knowing your child will always suffer health complications is hard. We want the best for our children and poor health isn’t what I had planned on. Fortunately, Michael doesn’t get sick as often any more although we had a bad run from October to March. The lockdown is at least keeping sickness at bay. Happy Monday.
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I completely understand your words Roberta…..when your child lives with chronic illness, it steals part of your soul. Your kids are very lucky to have such a wonderful mother…….I know they feel loved and treasured and that is a beautiful thing!
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Thank you, Wendi. They do feel loved and cared for and I am glad of that.
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🙂 absolutely they do because you are an amazing mom!
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That I was no longer who I used to be, that I became a shadow, unrecognizable even to myself.
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i am so very sorry Bojana…….when I could no longer see the old me in myself, it was a very scary time. I still hate it!
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I’m much better now. Thanks.
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I am sooooo happy to read this! 🙂 🙂 🙂
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That I couldn’t keep going as I was…and to say no. Accept that ‘me’ was a priority. Not much good to anyone curled up in the corner.
The beginning of self love, the unconditional that we seek is when we finally look inside…and weep because of what we find behind the door, but now for the first time have a broom in our hands 😀 ❤️ 🙏🏽 🦋
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🙂 I LOVE this Mark………..to think about peeking behind the door with a broom is wonderful and something I am going to use as a visualization! thank you again for the awesome comments and your willingness to share part of your journey.
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I guess my hardest thing is to know when to stop. I just keep going until I can’t move and then I am down for a couple of days. I hate not being to walk as far as I used to go or backpacking in to camp. I feel like I am wasting the day because I have to take a nap or will fall asleep way to early. The one thing that gets me through every day of my life is my loving husband who gives me all the support that I need.
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this is such a precious comment……….I LOVE that you have such a wonderful and supportive husband……that makes the tough days so much easier to get through. It is frustrating not being able to do what we use to, and accepting a new normal sometimes just stinks! Thank you so much for sharing.
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I’m in a different position from most of your followers, because it’s my wife that is ill and I am the caregiver. At one point she was sleeping 18 hours per day, and I’m sure she would say the worst thing was her fatigue. For me, it was loneliness.
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Thank you so very much for taking time to stop by and comment. I know there are several people who stop by and visit who are the caretaker of their spouse. You guys have a very tough job and are angels here on Earth.
Fatigue is something that has been very hard to accept and describe to others who do not live it. The loneliness for me has been unbearable at times, and I am so very sorry that this has been the same for you. Please remember just how wonderful you are and I hope you are able to get out and take care of yourself!
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It’s been hard to come to terms with the fact that I’ll never get back who I used to be.
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this is a really tough one. I think this has been one of the hardest parts of chronic illness too. I really loved who I was before and worked so hard unsuccessfully to get back there. Thank you for your honesty and willingness to share. I hope today is treating you well.
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Here’s a true story for you Wendi and recent one too!
You know we love plants and are forever adding new ones. One morning I was planting the ‘Texas Sage’. I was nearly finished with everything (and I get quite involved when planting), when I literally woke in the hospital. I guess it was a heavy duty Grand Mall.
My dear neighbor had found me lying next to the ‘Texas Sage’.
He called 911. My wife was at work. He didn’t know my last name.
The hospital did not know who to contact (they found me outside with no ID)
My dear wife had to look everywhere for me, bless her dear heart.
Seem to be ok now. They added more medicine to help control the seizures.
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oh my goodness Eddie. I am so thankful that you are ok – I can’t imagine how TERRIFIED your wife must have been. thank goodness for your neighbor and the care you received at the hospital. thank you for your willingness to share part of your life. God bless you my friend.
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I think the hardest thing for me has been the disconnect between all the things I want to do and the things I’m able to do. I’ve always been very active in my communities, and now I just can’t do the things I used to do and serve in the ways I used to serve. Learning to accept it, though, has enabled me to adjust and find new ways to contribute.
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Hi Terri! 🙂 Thank you so much for stopping by. I LOVE how you, despite your disappointments, have found ways around your limitations. You are an inspiration my friend………..thank you for sharing.
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Awww….you’re far too kind Wendi! Sending hugs your way!
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Thank you Terri, I happily accept those hugs!!! 🙂
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I second Renee’s comment! Same has happened to me too. Xoxo🌻🙂
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Oh Vivian, I am so very sorry that you have experienced the same things as Renee. It just breaks my heart for you…..I hope today you are surrounded by those who deeply love and care for you.
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It has really helped to have you and this wonderful blogging community for love and support! 🤗🌼👌
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we are all SO HAPPY 🙂 you are here!
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Awwww!! That makes my heart burst with joy! 😍😄😃😀😊
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🙂 🙂 🙂
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I’ll blob about this tomorrow, because I need to stew in it for a moment
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Thank you so very much Cynthia!!! I hope today is treating you well.
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It was weird. I worked today, and that didn’t go as expected, but at least it wasn’t bad. I think it’s weird because my schedule is different this week, I’m working afternoon/evening instead of very early mornings
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when I was working I always prefered afternoon and evening shifts because my mornings are usually so tough……..but, having a different schedule each week would be hard to adjust to. Take care great care of yourself this week!
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What a thread! It is good to touch our sorrow, our loss – all part of our very real experience. For me, as a person who had so much energy (once upon a time) and so many goals and dreams, the hardest part is coming to terms with: this is it. This is how life is now.
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YES!!! It is so very hard to think, this is it! and you are absolutely right, sorrow is part of our journey, no matter where we are on that path. Thank you so very much for sharing and your kind words……….Bless you!
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So welcome, Wendi.
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🙂
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After I was diagnosed with transverse myelitis, my neurologist told me I would probably regain most of what I had lost in a year or two, and what I didn’t regain, I’d get used to. I thought, “No way!” Thank God, I did recover a great deal, and I did get used to the rest after a long while.
I remember struggling with the balance between acceptance and pushing through to improve. Sometimes you have to push through physical therapy and just not feeling like it to gain any improvement, so acceptance isn’t passivity. But I knew some TM patients with the attitude, “I will never accept this: I am going top keep pushing until I am back to normal.” Yet very few get completely back to normal. So at some point we have to accept that “normal” is different now.
Amy Carmichael had a poem that ended “In acceptance lieth peace.” I think we do have to come to a place of acceptance to have any mental and spiritual peace. Just this morning I caught myself thinking several different “I wish” statements.–I don’t even remember what about. But I had to bring myself up short and remind myself that wishing didn’t do any good. I needed just to accept what was and seek God’s grace to deal with it.
That also doesn’t mean we don’t pray for things to change. But it has to be in light of accepting “Not my will, but thine be done.”
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This is very beautiful Barbara! I think that there is a very fine line between pushing yourself to recover/regain what you were before and accepting your new normal. I know it has been an ongoing battle for me and I am sure many of us who live with CI. I am so very happy that you regained so much, this is wonderful to read and yes, lots of prayer to get through it all. Thank you so very much for taking time to share this Barbara. 🙂
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The most difficult thing for me to accept is that my condition is life-long, although the symptoms vary in severity from day to day. I thought since I’ve been doing so well that maybe I could discontinue my current medication (it is very, very expensive), but the doctor told me the moment I stopped the med, ALL the symptoms would return. Bummer.
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I am so very, very sorry! I can’t imagine how stressful it is to pay for expensive monthly prescripitions. I can’t imagine how frustrating all of that is, but I am happy to read that you have been doing well!!!! 🙂 Thank you so much for sharing..
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Fortunately, at the moment my Remicade is covered by insurance through my husband’s employer. I’m worried that once he retires, we’ll lose that insurance and have to rely on Medicare. The 20% co-pay for Remicade is about $800 every 6 weeks, up to the maximum out-of-pocket annually. Right now, our annual out-of-pocket is $1500; on Medicare (assuming Remicade is covered at all), it will be $6700. I can’t afford $6700 a year.
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I am happy to read it is now being covered by insurance but oh my goodness, that is a lot of money!
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I think that acceptance is the first step towards dealing with any situation. Unless we acknowledge the problem, we cannot go about doing something about it.
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Thank you so very much Sadje for stopping by and commenting………I agree with you, there are just times I just don’t want to acknowledge the whole thing.
I hope today was good to you 🙂 🙂
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You’re welcome Wendi. Thanks.
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🙂
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I was first going to say knowing my limits. I get so frustrated not being able to do things I did easily a few years ago. Then, I realised it is not knowing. I can do the same things each day and get different results. That depresses me. I just shared on my blog a meme that is exactly right. T1D, when everyday of my life is a science experiment. Thankfully, the good part is meeting folks online who encourage and uplift.
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Thank you so very much Kris for stopping by and sharing part of your journey. Although we have different situations, I completely understand the not knowing……….I live this too. It does cause a lot of stress and there are days I don’t have a choice, there are things that must be done, period, and that does extra stress. I happy to read that the good part is meeting people online who encourage you…….you are absolutely right. So many amazing people I have found and it is a huge blessing! 🙂 I hope today treated you well.
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Today..not knowing. At least it will make what might be an interesting post! lol
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🙂
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Physical pain. I hate it.
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I am so very sorry! Being in chronic pain is terrible and it can make you feel like you are going to lose your ever-loving-mind. I have sent up a prayer for you regarding your pain……..Thank you for taking time to stop by and comment, I appreciate it. 🙂
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Thank you Wendi! I really appreciate your prayers.
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Asking for help. I hate not being able to do simple things
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Hi Kristie! Thank you so much for stopping by and commenting. It is so very difficult to ask for help to get through the day and when you are so use to being able to do those simple tasks independently, it feels like failure. BUT, you asking for help is a way a taking good care of yourself and your family. 🙂 Thank you for sharing…….
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I find your posts encouraging and inspiring. So I nominated you for the Ideal Inspiration Blogger Award, an unofficial award acknowledging your work. Many blessings, The Devotional Guy™
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thank you so very much for thinking of me, I deeply appreciate your kind words. bless you!
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I am not sure if I am answering your question correctly since I have still not “accepted” this. The hardest part for me is fighting with doctors and health insurance
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Thank you so much for stopping by and commenting Grace! To be honest, I LOVE that you have not accepted your situation. I went through years of not accepting it, accepting it and then getting pissed at myself for accepting it. 🙂 Yes, doctors and health insurance companies are usually a huge pain in the butt! It you find a caring and half-way competent medical professional, it is a HUGE win! Thank you for sharing Grace and I hope today is treating you well!
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Did I tell you I’m somewhat vertical now?!?!?!? crutches and a walking boot for baby steps, for at least part of the day…..super exciting
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this is TOTALLY awesome!!! YAY! I am sooo happy for you……baby steps and then big girl steps!!! 🙂 thank you so much for letting me know.
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Wonderful post Wendi and beautiful question to ask your readers…
I guess for me what I had to accept most, was that it was my own thirst for my own little piece of power and control as I rose in climbing my own career ladder that was my biggest hurdle..
In my aim to please others within the textile industry I was within from leaving school aged 15.. From sewing machinists, to sample machinist, to working with designers in concept garments and samples for retailers.. To supervision, to management within training.. All spanning 25 years…
The worry, the neglect of myself in not eating properly, living off nervous energy, was not doing me any favours… It took a mental breakdown, and when that didnt work as I went straight back into the thick of everything.. It took my body to break down …
It took a long while to realise I had brought it on my self.. And that is a hard pill to swallow.. And I am not saying all illness’s work like that…. by any means…
But it was Stress, it was me feeling unworthy, and un loved… ( even though family loved me.. ) The love I really wanted had always been my Mothers Love, which she never seemed capable of giving me..
So I guess I sort approval.. I sort Love of another sort in appraisal of my work..
When I finally let go of that career path, because my body shouted loud and clear I needed another path.. When I changed careers, To Care for others in Support within mental health.. Yes I threw myself in that job… I learnt and I studied.. But the job was no longer about ME… but about others..
I guess you could say I stopped serving Self.. and began serving others.. and in that process I followed the self healing, and self love, as well as learning to love those whose lives were less loved because they were adults with autism, or who had Downs Syndrome… or other mental illness’s..
I then began accepting Me for ME… in the Now… with No expectations …. 🙂
I didn’t expect to rant on so… But with acceptance comes oh so much more.. ❤ 🙂
Sending LOVE dearest Wendi…
And all we can do is LIVE our BEST each and every Day.. ❤
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Sue, thank you from the bottom on my heart for sharing this part of your journey. I know it will help not just me, but so many others who will read this. This journey that you have taken has helped so many people through your encouraging words of wisdom. Although I have a congenital brain deformity, I know that childhood issues and other childhood trauma has added to my issues and you have helped me see this through your words……..Bless you my friend……sending you love and light!
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Blessings sent right back Wendi… Huge hugs ❤
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I think I’m pretty good at accepting my circumstances. When it all crashed down I simply said, “Life may not be what I expected, so I’ll change my expectations”. That helped.
But I have found there is one thing I have a hard time with, how I always seem to crash back again after I have been doing so well. When a treatment or medication I try works, and then it stops working. That’s what I have a hard time with.
But I learn something each time I guess. And I know from those experiences that I can feel better. 💕
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I love your outlook Wendy! You have such a healthy way to look at things………it is such an amazing experience to feel better in moments……..it makes you crave and hope and beg (at least for me) to heal or at least have symptoms greatly reduced. I hope today is treating you well.
Just curious, do you live in a low or high humidity climate?
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Today was a good day. I had a treatment today and it went very well, Back to normal. That bad experience seems to have been a fluke. 🤞
No migraine today either! 😁
I live in a low humidity climate, until monsoon season then it’s wet. I live in Tucson, Arizona. Today I think it hit 103F with barely any humidity.
I moved from NC 2 years ago, high humidity. I thought moving here would be better, but there are so many other factors. So much dust, and the light!! New allergens. My migraine doctor said this is one of the worst places for migraines. We live in a bowl, surrounded by mountains, so the barometric pressure can fluctuate a lot too. And monsoon season is horrible.
I assumed that’s why you asked. 😄
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i am THRILLED to read that you had a good day and your treatment went well……..prayers answered! 🙂 and NO migraine…….woohoo! May every day be a good day for you!
Thank you for letting me know about the weather where you live. We live in Indiana and I have been wanting to visit the SW and see if the dry and less humid areas would help my migraines but if the barometric pressuse changes a lot that you be HORRIBLE for my chiari and it changes the fluid in my brain causing more horrible headaches……….So happy I asked. I hope today brings you smiles. 🙂 🙂
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I don’t know if all of the SW would be the same, as I mentioned we are in a “bowl”, but I bet it would be great for you during the winter. Winters are so mild and calm here, a lot of people come just for the winter because of that. I didn’t know, or most likely forgot, that you have chiari. I understand those headaches because of the idiopathic intracranial hypertension. It’s horrible. My heart goes out to you. Love and hugs. Wen
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thank you Wendy, yes, my headaches are pretty horrible. some days worse than others……..as I know you can completely relate.
thank you again for the info, I so need to get out there and see what it is like……….I am always hoping for a miracle. 🙂
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I hope for one for you too. 💕
And me too while I’m at it. 😉💕💕
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thank you! 🙂
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