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    Being alone with chronic pain.

    I'm pretty sure I'm not the only one who suffers from chronic pain and does this alone.
    Ten years seven surgeries and now the neurogenic muscle atrophy is coming for my ability to walk.
    I wear bi lateral full leg braces because of this condition and now I can barely put my braces on,I mean a brace will only help if you can still move your legs.
    In seven days I see a surgeon who will hopefully stop the irreversible muscle atrophy before it's too late he may think it is too risky to remove previous fusion hardware from my lumbar I'm so worried this might be the case.
    I tell this long boring tale because whoever is in chronic nerve pain I can so relate if you're doing it Solo.
    If you're relationships fail because they didn't want to hassle with the condition you have don't let it get you down you can't blame them for wanting a whole person.
    #ChronicPain #Depression #neurogenicmuscleatrophy #Disabled ALONE

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    Chronic illness level up!

    New diagnosis: POTS. Was on ivabradine for a few weeks and ever since I’ve come off it my heart rate hasn’t been happy. For some reason my blood pressure has suddenly become normal after being low for months. Not complaining, just very confused.

    Went for an MRI last week for my sinuses, said it would be about a week for results but still waiting. On the bright side, that probably means it’s not (too) bad news. I’m glad I pushed to see them earlier though, because I caught a cold from my housemate and it caused hell with them. Constant congestion, migraines, lack of appetite, nausea, coughing, and I took about the same amount of painkillers in a week that I had taken in the last few months/ maybe even a year (I am VERY opposed to them & chronic pain has left me with a high pain tolerance anyway).

    Waiting on GERD referral & have heard nothing. Doctor prescribed a PPI but didn’t put it on repeat and the progress made on it was lost when I had to fight for a week to get it re-prescribed after I had ran out.

    Chronic pain has been quite a struggle. I’m concerned about the increase in occurrence of pain so I booked a routine doctors appointment. Also having a flare up of my foot pain (tears when walking) so it’s just an extra thing I get to deal with.

    And on top of all that, trying to keep my mental state okay and making it look like I’m okay to everyone else. It’s all just really exhausting, but there’s this quote that I remember a lot (but will probably get it wrong slightly): “it takes ten times longer to put yourself together than to fall apart”

    Okay, I’ll finish this with some better news. I’m cleared 1 year post-op and hearing loss is confirmed not to be an issue anymore. It was borderline but I’ll take the W. I also had my two jabs, perks of being disabled I guess.

    #ChronicIllness #ChronicPain #Surgery #Postop #MentalHealth #Migraines #PosturalOrthostaticTachycardiaSyndrome
    #GastroesophagealRefluxDisease #HearingLoss #Depression #InvisibleIllness #Disability #Disabled #BackPain #chronicbackpain #Lowbloodpressure #BloodPressure


    The disability vote in Wisconsin #Disabled

    The gubernatorial race in Wisconsin could impact a lot of people with disabilities. Michels, if elected, would sign legislation that would make it more difficult if not downright impossible to vote. He refers to people with disabilities as lazy, is against the reasonable accommodation that allows people to work from home when appropriate, and would jeopardize our long term care programs. The last Republican governor we had nearly obliterated the IRIS program, a successful home healthcare program that actually saves the state money. Evers may not be perfect, but he is so much better on issues that affect voters like me.

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    Living the life

    Hand cycles are the best.
    #ChronicDepression #Disabled


    An Unlikely Solution To Get Disabled Actors Into Big Roles In Hollywood

    Once again I heard people complaining about directors casting non-disabled people as disabled people in the comments section of movie trailers. Another solution to the problem that I haven't talked about before is "nepotism babies". Even though some could argue that they are what causes the problem, they are paradoxically the solution.
    Let me explain.
    Each celebrity has a disabled family member, whether it be a child, cousin, aunt, or stepbrother. These celebrities have the resources for their disabled family members to get in front of casting directors and bypass some of the beginner steps so they can move on to speaking roles in Hollywood movies. When put to use, that could catapult a disabled person into the spotlight.
    One good example of a celebrity letting their disabled children follow into the spotlight is the Swedish performer Malena Ernman. Her most famous daughter is Greta Thunberg and her youngest daughter is Beata. Like Greta, Beata also has some invisible disabilities and is a professional performer.
    While I believe parents should have the final say about when a child is old enough to enter show business, I also believe that if someone is too young to have a public instagram account, they are too young to be in the spotlight.
    In all, I believe the parents of disabled people shouldn't have the attitude of, "My family member is too fragile to be on a set," and at the same time allow their able bodied children be on set. #Disabled #Employment #Paradox #ActorsWithDisabilities #Parents #Support


    More GREAT Ideas on How to Take Care of Your Child with Special Needs

    Recently came across this blog post with some awesome information you might like! There's really not enough information in one place out there like this. I think you might like this blog as it contains some more generally helpful information for raising a child with special needs - www.nilotoys.com/tips-for-parenting-a-child-with-special-needs #Disability #Disabled #SpecialNeeds


    Hey guys I'm new to this

    I'm here to better understand bipolar disorder & insomnia. I'm a permanently disabled single mother of 2. Been on & off my psych meds for almost a year. I'm just looking for tips on how to stay on track.

    #MightyMoms #Disabled #BipolarDisorder #Insomnia


    I can do this....I think....ummmm #ChronicDepression #ChronicPain #PTSD #Disabled #IfYouFeelHopeless #Anxiety

    New house I don't think I deserve. This coming from someone who grew up dumpster diving for food, living in the semi my dad drove who later fights the urge to hoard. My dad and me. As soon as we close on the house I want to spend the night by myself to adjust. I usually stay on my bed and don't leave the room due to triggers and anxiety . Going from this I want to go minimalist with my things. I don't know how my wheelchair is going to handle the carpet. I may just sit and spin but I'm hoping not. Nothing is going to be in the house,no power,water,or ac. No help if I need it. I'm excited and terrified but it's a new beginning to the next chapter of my survival. I say survival because that's simply more of what life is for me. I struggle every day with pain and that in turn pushes me towards a depression spiral. I haven't been by myself for over 2 decades. I've tried to be a good mother and a supportive wife. Now I have an empty nest and an irritated husband.(This is my journey though so he can just deal. ) I'm struggling with the hoarding so I thought I could get a feeling for the next step by basking in the nothing of an empty house. It'll give me time to find out what I can live without. If it's unused in the past 6 months it goes... unless it's brought me joy. Not much has except holding my granddaughter. Right now that's all hope because the in laws we're selling the house to got evicted and are living with us. The last time they lived with us both me and my husband tried to end our lives(at different times) so this may just be the beginning of the end one way or another. Stress and boundary issues and constantly being reminded of me being worthless (in such a way you can't say stop without proving them right) We haven't closed on the other house yet but the words "What kinda person do I want to be?And people change." Kept me from saying no they can't move in yet. So far so good after a month. As long as I hide as much as possible I can't get dragged into anything. Sometimes being a good person is risky but I won't change that about myself. I can take her losing it on me if it happens. What I can't take is staying here so as soon as we sign the contract I am running so it stays peaceful between everyone. I can't help it if my choices make anyone feel bad. I can only control how I feel, what I chose is going to be the best option for me.....and being by myself may be all I need. Is my husband going to like this, well no of course not, he's going to feel like I'm running from him no matter how much I tell him I'm not. He's just as much in low self-esteem as I am. But after the first night he can bring a sleeping bag if it helps him. If I don't do this I will never know if I can ever understand being a bit independent. I need that, just once because I have never been in my own place without kids or in laws living with me. One night. I can do that, right?


    Struggling. I need some encouragement. 🫂💜

    I went to physical therapy today for the first time. I've been in a bit of a denial how bad things got. It's finally setting in. I'm truly disabled. I have struggle to walk and use my hands. I think I need to change my lifestyle a bit and need to ask for help from family and friends. This is a scary and frustrating time for me. I have 4 young kids and I can barely manage through the day. Basic tasks take so much energy and time and I get exhausted so quick. My husband ends up having to do alot. I was away for 2 months at a treatment center less than a year ago. This is just too much. 😞 #FunctionalNeurologicalDisorder #Disabled


    Trouble walking again and so scared of what people will think or say to me! 😟

    I'm having trouble walking again and it scares me. Will I be believed? Will ppl think I'm faking it? And if it comes to that, will they say I'm not disabled enough to use walking aids? Especially with FND there's already a stigma that it's all in my head. My MIL is not supportive of me and thinks there's a quick fix if I just went to better therapy. That's not how this works! I'm in such a panic which is making my symptoms even worse. How will my kids take it? I'm so afraid! 😟 #FunctionalNeurologicalDisorder #Disabled #Anxiety