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When you go it alone…a pity party and garbage tossing therapy

  • By caseygrace

    I think the hardest part of this is not having any help, no family nearby, save my sister from far away who helps with research and emotional support from afar. I find myself weepy a lot as I toss my half filled garbage bags down the stairs because I cant make it down alone with the weight of them and the pressure on my back and knees. I did laugh when a worker across the street saw bags flying down the stairs like a Badger digging out his den. I’m sure he was thinking, whoa, nut job!

    I own my own business, the irony of which, is that its in Medical rehab, Hiding this from my patients is important because I risk that my patients and clients might react as some do, to finding out someone has cancer, with distance. I can’t risk that. One client’s face who heard my knee crack audibly as it gave out at her home was evidence of that already. Oddly I always hold space for folks who have tough stuff going on in my practice. I feel honored to be there for them.

    I’ve always been one of those folks that has held the belief that if I was ever diagnosed with a serious cancer, I would move to Oregon and use legal euthanasia. I’m not one to make a good nursing home candidate. I’d be miserable if I became totally disabled and had no one to look after me. Oddly, as I suspected many of us are or were the caregiver types. Everyone always comes to me for advice and counsel. I’m finding that the whole martyrdom MO was highly over rated.

    How odd that I find myself alone physically, not sure if I will lose my business and apartment, totally unable to see the future and unwilling to “go there”. My life was just getting to the right porridge consistency when all hell broke loose. I knew as I went to move into my new apartment and the folks that were going to help me crapped out, that lifting all that heavy stuff was not a good idea. I had no idea, just a few months later I would be sitting here writing this.

    Dreams are funny things. I’ve worked so hard to leave behind a dysfunctional family, an ungrateful adult child and be willing to create and invite something new and wonderful into my life. I had so many great plans to renovate my apartment and furniture. I just had lined a back wall with wall units filled with all my crafting supplies. I had hopes of going out to Colorado to a Wolf rehab for my 60th Birthdayin August but now I have no idea where I’ll be or if they will let me near the wolves. ( I was swan keeper and wildlife rescuer)

    This morning I told my computer repair guy/friend to hold off a day or two more before he came over because I spent two days this week in total exhaustion, sleeping 13 and 14 hours, totally unlike me. My place is not clean and I would not let anyone in there right now. I really need my computer and he makes light of my illness telling me it was great I moved to a 2nd story apartment for the exercise. NO, I did not neuter him, promise. I wanted to!

    People hear Psoriatic arthritis and all they hear is Psoriasis as they guardedly scan my visible body for lesions.

    I hope it’s okay to let it fly here, I’ve been trying to be so brave for months now and I just cant hold all this in. Thanks for having a place I hope I can come for support, friendship, camaraderie and information.

    Blessings to each of you!

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  • By CathyD Moderator

    Hey caseygrace,

    You are more than welcome to come here anytime you need to vent, or just have a chat. I am so glad you decided to share with us, I hope letting it all out helped in some way.

    I’m so sorry to read about everything you are going through at the moment. It sounds extremely difficult and it breaks my heart that you aren’t getting a lot of support. Especially as it sounds like you have given such a lot to others throughout the years. I would like you to know that we are here for you, and with you, through this. Please don’t hesitate to reach out, anytime!

    Big hugs!!
    – CathyD

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  • By kaye

    I understand the looks and I am to young to be walking like i am eighty. Its so frustrating and makes mefeel weak. I have always been so active and there are times it really limits my abilities. I am hoping for something that I find will help thats natural. All the things that are there for A person to take are scary at best. But given I cant walk without it I take it. I really worry what it will be like in a few moreyears! I will kerp looking, learning and trying to find things that work but dont harm my body in other ways. Good luck everyone your all in my thoughts!

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    • By caseygrace

      Hi Cathy d

      Thank you for your warm welcome and kind words. I know many of us struggle with overload as we navigate our best treatment options.

      Please excuse the delay in responding. My whole body is flaring, on week 7 of MTX 15mg injectable and facing possible knee replacement and back surgery because of my PSA.

      I’ve read quite a few threads on several sites and see that patience and education are key components to finding my best options.

      I’m looking for a new Rheumatologist as the one I have is akin to Amelia Bedillia….shakes my head.

      Have a wonderful day. I look forward to sharing our journies.

      Caseygrace

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  • By Rebecca Keymaster

    @caseygrace – When I read through your post I am amazed at how much you’ve managed to accomplished….and how much you’ve managed to do all on your own and without support…..while giving so much to others. And, like Catherine said, “Let it fly” here anytime.

    And God bless you for not neutering that guy. That’s some serious restraint 🙂

    I have to say – on another note – I’m dying to hear about this Wolf Sanctuary!!! Where did you do wildlife rescue work?

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  • By caseygrace

    Dear Rebecca,

    Thank you for your words of encouragement.

    The Wolf and Wildlife Sanctuary is located in Divide, Colorado.

    I’m not sure if this PDA of mine will be in check by my birthday in August but I really want to go. Time will yell.

    As they say, “Patience grasshopper!”

    Caseygrace

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  • By PattyJ

    I don’t toss my garbage. I live in a 2 story house with the laundry in the basement. I do toss my laundry and bought those pop up baskets with the handles on top that I can rest on a step as I climb them with the clean clothes. I gave up having shame on cleaning my house and even gave in to getting home help. I am on disability and it actually helps me financially. But they don’t do deep cleaning and I know I will never get anyone who will do it the way I would. But just getting someone to do the basics that are difficult is a big help. But I sit out in my yard on a folding chair to do yard work. I’m sure some of my neighbors were staring when I was using an axe to cut out suckers growing up from the roots of my crabapple tree in the front yard.

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  • By Eurotrekker

    Caseygrace, I, too, am alone. Well, I do have a cat who keeps me company. I live in a house that is only one story. I have trouble with the three steps leading into it. Taking garbage out is literally a pain. So is grocery shopping and caring the bags in. Now my washer and dryer have gone out, so I have to load clothes and go to a laundromat. I use a suitcase with wheels. My house is over 100 years and it literally falling down. Four inspectors have said it is unlivable. However, I supposedly make too much for any assistance, but not enough to live. They actually used those words. I’ve been told I’m one of the unfortunate should who falls through the cracks. Some of my pipes are broken, the gas line had ruptured, so no more had for coming or heat. The wiring is bad, so no running more than one appliance at a time. The floors are sinking. The window sills are rotted out and the siding is falling off. My only brother and nephew are over 1000 miles away.. I can’t afford to move into an apartment, buy or rent a house. I don’t know what I’ll do when my house completely collapses. Oh well, it’s all ok, because my roof doesn’t leak.

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  • By Casey Moderator

    Wow. As I read through this forum just now, I’m reminded of how amazing and important our community and its members are.

    Eurotrekker, PattyJ and Caseygrace–I’m so sorry to hear that you have all had to endure, and are currently enduring, so much. I hope in reading each others’ stories you can see that you are so not alone. Not only are your fellow community members experiencing similar frustrations and plights, but our moderators and other staff members are also here for you whenever you need a friend or support. Please continue to share these stories and experiences with us. Members like you, and posts like these are what make our community the thriving and supportive place it is. We’re so grateful to have you all here, and please know that we’re sending warm thoughts and gentle hugs your way. -Casey, Psoriatic-Arthritis.com Team

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