Disabled, Self-Care & Lyme 

21 Mar


Lyme & Self-Care 

I always thought when my parents were older I would be the one taking care of them and showing them appreciation for everything they’ve done for me in life. Little did I know I would become disabled and they would be taking care of me the rest of my life. Chronic, late-stage Lyme disease has made me disabled. I don’t like that word but it’s true, I can no longer take care of myself or do most of the things I used to be capable of. I don’t know what I would do without my parents. 

My parents are both at retirement age and my mom is showing signs that her lupus/CFS are coming back out of remission after 20+ years. My dad has health issues of his own. So I feel like I need to be there for them and help them with their needs. I didn’t know I would be on a fixed-income after working hard my whole life and educating myself for a solid future. I have no spouse so I make under poverty level income but I am thankful I did work for 16 years and have some sort of social security income. Medicare as we all know doesn’t cover much with Lyme and I have no idea if they have dental insurance? 

I fear daily that my parents may get worse or have health issues and we all will be laying here in bed with nobody to take care of us. I have a sister but she’s not reliable nor does she ever care to learn the illnesses I have. I have another “sister” by bond but she lives a few states over and she is barely hanging in there herself. Just have to keep hope alive that something gets better for us all. This post was mainly just me thinking out loud but also maybe someone can relate to what I am saying. Have a great weekend Spoonie family. 


11 Responses to “Disabled, Self-Care & Lyme ”

  1. Dive GirlDeb March 21, 2015 at 9:34 am #

    I live alone, am on SSDI too. So I get where you are. I turned to Bee Venom Therapy. It costs me $32/month and I’m now getting my life back as my symptoms fade.

    This is a group dedicated to discussions on Bee Venom Therapy or Apitherapy. Many use it to treat Lyme Disease & it’s Co-infections.

    Love & Venom, Don Downs!! Love his work.

    Bee Venom Therapy or BVT has been used for 6,000 years to treat many conditions. It’s well documented and there are many first hand accounts to be found.

    BVT has many, many benefits. For a Lyme patient it offers this: kills parasites, bacteria, & viruses. This is near 1,200 infectious agents.

    Here is one cool kicker, BVT pokes holes in BioFilms! Yep, way cool. These holes are gateways for antibiotics, herbs or your own immune system to access the bugs. Happy dance for that bonus.

    Additionally, pain relief & hormone balancing are certainly part of the benefits. The venom kills bugs while rebuilding damaged nerves as well.

    Wanna learn more or find a practitioner near you? http://www.apitherapy.org/

    Contact us at LymeDiseaseEugeneOR@gmail.com
    (541) 854-LDEO or (541) 854-5336

    Everyone is welcome.


    • 49er Bryan March 22, 2015 at 2:00 am #

      thank you. I will look into it but my lyme is so old and my body so damaged that I don’t think it will do much. The problem with me is I have so many other illnesses so even if lyme was quiet my other illnesses would be flaring so it’s never a win win.

  2. Greg Hawkins March 21, 2015 at 10:38 am #

    Thanks, for your thoughts, empathy, compassion and perspective/experiences living w/ this horrid disease. Be well, fellow “Lyme/Spoonie,” Greg Hawkins, SJ @gehawkins

    Sent from my iPad

  3. Brenda Hardison March 21, 2015 at 3:10 pm #

    Please, please look on the internet and check out the Dr. Cowden’s Support Program for Lyme’s Disease. My accountant gave my name to a client of hers (which is a nurse) who is suffering Lyme’s as well. She was NOT ignored help, as the Hospital so went to saw the bullet on the back of her leg, so she was treated at first with antibiotics if I recall correctly BUT was still suffering as any one struck with Lyme’s in Canada finds out, you are disregarded by all health care professionals when you mention that you have Lyme’s. I was told by a professional that I did not LOOK like I had Lyme’s Disease. I should have asked him WHAT it looks like, but I was so tired of being disregarded I was beside myself. Anyways, this lady is the one that told me about Dr. Cowdens Program, all natural drops, a course of it for 1 year as this man has studied every aspect of Lyme’s – lost someone due to this illness and has made it his passion to save others. This lady has started the program, she has had Lyme’s since 2012, myself 2013, and after two months of starting this program, she is starting to feel better. I will be starting this program by the end of this month and seeing my natural path to guide me. The company I worked 33.5 years for denied me short term disability, as well as LTD through Sun Life and I am waiting to hear from CPP. All I can do is pray, as we are living off very limited funds, so I know how you feel. I worked that hard and long to end up with nothing and no help. Do yourself a favor and look into this, it also clears up other illnesses.

    • Dana March 21, 2015 at 3:56 pm #

      Thank you for sharing this information on Bryan’s blog. Like Bryan I suffer from Lyme, I am going to look into Dr Cowden’s treatment plan.
      Thank you again

      • 49er Bryan March 22, 2015 at 1:51 am #

        You can find good prices on it by searching on google for sales. I bought most on Amazon or got them from my llmd. Wasn’t successful for me but it may be a help for you. Good luck

    • 49er Bryan March 22, 2015 at 1:50 am #

      Thank you for sharing. I have been on the Cowden protocol a few times with no success. My lyme is 32 years old so not much can help me at this point. I was misdiagnosed for too long and by the time I first took antibiotics for my lyme it was already 28 years old. I have heard some having success with the cowden protocol so I wish you luck with it. Stay strong

  4. Zilla of the Resistance March 27, 2015 at 3:04 pm #

    I know if you are on straight SSD (that is based on how much you paid into the system when you were still able to work) Medicare absolutely does not cover dental. HOWEVER, since you say you’re technically below poverty level I assume you qualify for SSDI (based on your financial situation as the gov’t sees it and not whether or not you paid into the system when you could still work), you probably qualify for MediCAID, which I do believe covers some dental (and eye care, too). You might also qualify for “extra help” paying for meds that Medicare part D won’t fully pay for. You probably need to go through your county or state’s local human/social services to see what’s available to you, but I’m sure any kind if additional help you can get would reduce your stress & help relieve your parents some, too.
    If you have trouble dealing with the local beurocrats for assistance, there are usually “community action” centers that can act as intermediaries on your behalf and if you’re housebound, you may be able to get someone to come over to help you do the paperwork or they might be able to help you over the phone.
    Thank you for keeping your blog going despite everything you are suffering through, you help more people than you’ll probably ever know. I am sick and in pain, but you inspire me to keep fighting to get as much of my life back as I can from those darned tick diseases and to try to get back to writing more myself.
    Thank you for keeping up the good fight. I wish every blessing possible to find its way to you, something to make you smile even on very dark days, and relief both for physical and financial issues.

    • 49er Bryan March 28, 2015 at 9:12 pm #

      Okay thank you. I had about 16 years of work in before I became disabled. I didn’t get any help from my employer as far as long term benefits. I have MediCal which is California’s version of Medicaid but it’s $800 per month so I don’t pay or it unless I have a giant hospital bill then I pay it so they will help pay a portion. Appreciate your help.

  5. Dani April 8, 2015 at 3:43 pm #

    I don’t know if this helps, but I have POTS, Fibro, CFS and suspected Lyme (bullseye in 2008) and there is a program called In Home Supportive Service that could either help you or your parents. The county pays for me to get 12 hours of help a week…and it has saved my life and kept me independent as I am single. Im in Socal, and I know Orange County has a program too…but I think you have to check with your individual county. They can help you with things like cooking, cleaning, errands, driving to dr apmts, and personal care if needed. Your hours are based on your assessment. This is free to the recipient (me) and it can be someone like a family member that designate or from a pre-approved directory. Here they pay the workers 9.85/hour. Just a thought! Thanks for your blog…ive been begging to get tested for Lyme for years, but dr.s all tell me im crazy, so Im going thru the testing process again. This disease is crazy!

    • 49er Bryan May 7, 2015 at 12:39 am #

      Thank you! I make like $25 above poverty level so I don’t qualify for the extra help, food stamps, or things like that. Even my Medi-Cal they want $800 a month before they will cover it. Hope your day’s are going better for you. I’m on Instagram if you ever want to chat.

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