fybromyalga

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    In a place far away where the water meets the sky... -Carrie Underwood #Gastroparesis #fybromyalga #ParkinsonsDisease #Depression #Anxiety

    “I won’t cry cause I know I’ll never be lonely, for you are the stars to me, you are the light I follow. Til I see you again” #CarrieUnderwood

    That picture right up there means so many different things to me. Sure it looks like it was a lot of fun and you would most definitely be right about that. But besides the fun we had that day it reminds me of the woman whom I love, miss, admire, as well as draw my strength from in times of weakness and despair, hopelessness and sorrow.
    That is my Aunt Debbie. She passed away in October 2017 from uterine cancer tragically. She had just turned 6 two weeks prior. I say tragically because we didn’t know that she would sit in her living room one night, watching tv and suddenly be gone. Getting a phone call at 12:27 am from my uncle crying that she’s gone and to please get there as fast as we can. I had never lost anymore that I was so incredibly close to so this was completely devastating to say the very least.
    Her name was the first that came out of my mouth. “deba”. Lol, sorry mom. Her nickname for me was “Sweetles”. Today I proudly display that nickname in a beautiful tattoo on my chest. She was my mother’s younger sister, best friend and other half.
    She bravely fought #BreastCancer at 37 and then went on to kick #CervicalCancer ass in 2006. She was on the train when the Ling Island railroad shooter rang out dozens of shots in a train car that was headed home to Long Island. She got right back on the train that next morning. Talk about #strength and #courage . She wasn’t about to let cancer or that shooter uproot her incredible fortitude and independence, not about to bow down and let them win.
    She was my best friend, my mentor, my shoulder to lean on, my voice of reason, sometimes putting me back into the real world when I was a teenager and as I grew up into a woman. She became the one I looked up at in awe and for inspiration and guidance.
    She worked for a company called #Amway working her way up the ranks in hopes of becoming a “Diamond” as they named it one day. Little did she know that she would go on to become a motivational speaker, mentor and idol to thousands in the process. Speaking all over the country and on collections of DVD’S and CD’s.
    She had a powerful yet gentle presence. Extremely uplifting and supportive, intelligent with some wit thrown in there and she always wore a smile that let you know she was such a special person.
    She went on to achieve that goal of becoming a #diamond a week before her death. I look at pictures and see just how appreciative, excited, and proud she was of attaining her goals. Doing so on stage in front of a sold out major arena in Virginia.
    Today as I struggle through my illness and my mothers illness I find strength and courage from her that I didn’t think I could ever possess. A fire deep down telling me to get back up and fight. Peace in knowing that I can handle this just like all of the things that my aunt once conquered and so I shall...

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    You gotta be strong, blah blah blah...

    Do you ever just want to smack someone that just keeps telling you this? Ok, maybe not smack but at least tell them where to go with that? I always appreciate the words and the thoughts behind it but sometimes I just need a break from being strong. Like, “exit stage left”. Seriously.

    Makes me think of an amazing song from #LinkinPark . The last one #ChesterBennington sang appropriately named Heavy. “I’m holding on, why is everything so heavy, I’m holding on to so much more than I can carry”

    Some days are just better than others... some days your just tired of strong.

    #Gastroparesis #fybromyalga #Anxiety #deppresion #ParkinsonsDisease #LinkinPark #heavy

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    Memories in our hearts

    Today is a challenging one but also one I choose to remember the good times in life and let it help me get through the day #Depression #Anxiety #Gastroparesis #fybromyalga #ChronicPain

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    I will not bow, I will not break #ParkinsonsDisease #Gastroparesis #fybromyalga #Anxiety

    There’s a thin line between bending and breaking and I have experienced that very recently. Let me explain this better to my Mighty Friends and Family.

    I have always been the patient in the bed and not the opposite way around. I never knew the feeling of helplessness that came along with that particular role and now that they are reversed I am in complete awe of how my mother has kept it together all these years without breaking let alone bending to a point where you don’t want to be.

    Having your best friend, your mother in a rehabilitation center where you can’t see them let alone be their voice and advocate is so extremely daunting and hard. It renders you helpless and on the verge of breaking.

    Somehow we find that voice within us to keep fighting and not back down to see our loved ones get the care they require, deserve and most importantly need to receive.

    This weekend I truly learned that “I will not bow, I will not break”

    #ParkinsonsDisease

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    My beautiful mother suffering from #ParkinsonsDisease .

    As I suffer through my own grueling days with #Gastroparesis and #fybromyalga I look at my mother and my heart is broken into pieces. So much of her has changed in just about three years and it also angers me. So I guess my thoughts or questions would be insight on how people manage there Parkinson’s and what to be more sensitive to

    Thank you all in advance!

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    Feeling defeated #Gastroparesis #fybromyalga #ChronicPain #Depression #Anxiety #ParkinsonsDisease

    I don’t really post much but just needed an outlet to vent. I’m having an especially bad day, pain wise with my Gastroparesis and fybromyalgia and trying to care for my mother with Parkinson’s today has taken every ounce of strength that I could muster. I just feel defeated and inadequate. I’m hard on myself and wish there was more that I was physically able to do and it starts to wear on me mentally. Any advice for coping with all these things and juggling keeping my head above water so to speak?

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    Learning how to except help..

    Today I was having a bad body day. I have been diagnosed with Endo believe I also have Adeno. Lately I have been feeling like I’m having fibromyalgia symptoms but not quite sure how to go about getting answers about that.

    Any who, today my body just felt.. Yucky? I guess that’s the way I describe it. My brain felt disconnected from my body, it was hard to make sentences and my body response felt delayed. Also my legs felt extremely weak to the point where I felt like I’d collapse from just standing. My fiancé had to help me walk several times and had to carry me to the bathroom once. We decided to get some food with his parents because neither one of us felt up to cooking.. My hair was so oily because taking a shower this week was daunting, I said it’d just wear a hat but my fiancé said “Why don’t you just bathe, you’ll be happy you did.”. I said “Fine..” He helped me get undressed and told me to sit in the shower. After he undressed he came over and said “Don’t do anything I’ll do it.” He started to wash my hair as I washed the rest of myself off. I began to cry because this was the first time he had to bathe me, I felt so embarrassed and my ego took a huge hit. He held me and said it was okay. I told him how embarrassing it was for me and he told me “It’s okay you need help. This doesn’t change the way I feel about you.” Which made me cry harder.

    My whole life i’ve felt so much pride in being so self reliant. Now I’m learning that it’s okay to let people help you, but god is it hard..
    How have you all learned how to except help from others? Was it hard?

    #fybromyalga #Endometriosis #Adenomyosis
    #ChronicPain

    Question

    Any recommendations to which medications are helping everyone sleep at night? #Insomnia #fybromyalga

    I’ve already tried Melatonin and Benadryl. My Dr has prescribed Doxepin which works pretty well but my weight gain is a big problem. I believe I can’t take a muscle relaxer because it would interact with my other meds.

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    How to be a mum when you can barely function, totally just surviving. How do you manage? #chronic

    #ChronicIllness #Mumguilt #fybromyalga #ChronicFatigue #Lypedema #EBV #StayPositive