posted
Several yrs daily abx including 1 yr Rocephan but still in bed most days. Hubby has it, too, so we're a mess.His aortic heart valve affected. Kids trying to figure put how to get me out and into clean environment near them.
Hubby won't move, continues to hoard. House is big, filthy storage barn. I live in 1 room and spend most time alone. Too tired to go out or do much of anything. Speech difficult. Trying to hang on to sanity! (Assuming I ever had any)
Memory worse and worse..swollen knees hurt, twitch. Can't eat much but lose no weight. Doc thinks I need to see GI doc.
I'm fed up!!!. I've been at this for 25+yrs!
Any words of wisdom? My doc in SF is well known and expert LLMD, begs me to be patient. I do show some slight improvement in CD57. He points out that I've been sick for a very long time. He promises to switch to new oral meds in late July.
Diet is mostly gluten free, is sugar free and I rarely finish a meal. I haven't been in the kitchen downstairs since Dec. Our 2011 Xmas tree is still up, covered in dust, as is my piano.
Son urges hubby to apply for assisted living help but he refuses, or at least drags his feet. He is exhausted, overwhelmed and very disorganized. Our son is helping a little, but he is very busy, too.
Are there Senior organizations to help people like us?
Any creative ideas?
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
This does sound very hard!!!! I am wondering if their is anyone around you that could help?
Do you belong to a church organization of any type?
Is there any senior citizen help if your area? you could apply online to elderhelpers.org....maybe there is a volunteer in your area?
If your hubby doesn't want to do assisted living right now maybe you could tell him you really need some help around the house? Or maybe your son could help you find somebody? or maybe assisted living could be temporary until you two are feeling better?
I also hate to think that your stuck in your room without access to your kitchen and spending most of your time alone:(
Praying for you. hugs:)
Posts: 137 | From ATX | Registered: Nov 2011
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Well your kids seem to get it but hubby doesn't.
Hoarding is a problem to say the least.
Sounds like the hoarding is the deal-breaker for you, understandably so.
If your kids are willing to take you in, go for it and leave all that other baggage behind.
Posts: 1885 | From here | Registered: Jul 2012
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
You deserve to be fed up! Seriously?!!!!
You need help. Can kids arrange care for you and hubby a few times a week? Help with meds, cooking, shopping, whatever.
You need more than one room in a filthy house. Let the kids help you move and deal with the house. You are too sick.
This disease is unreal. Look what it does to us.
You deserve a clean and comfortable living space. Lyme suffering is one thing. There is no need for additional life suffering if something can be done.
Is your husband being treated for depression? Hoarding is a sign of unbalanced brain chemistry. I understand he's sick and exhausted, but life is less overwhelming with neurotransmitters on board.
As for you, keep treating! If you stagnate, switch meds. I've been at this for over five years (20+ years in all - same club!) and I make the most progress on meds my body hasn't seen very often.
Currently herxing and improving on Alinia and Valtrex, both new to me. Plus Mino and Zith, in which I should just buy stock at this point.
It is good to hear from you. Please don't lose hope.
posted
I think I'll pm you, but first, some comments here -
For me, hoarding happened because I could never get around to going through everything and I really wanted to, so I kept everything.
Finally I realized so much of it got out of date so I tossed most of it, and don't do this anymore, realizing that maybe we don't always get to everything we want to get to.
And that's an aspect of the illness limiting our energy and function.
For my knees, turmeric helps. I get it in bulk and put it in capsules. The red light tool also helps take down the pain for swollen joints. My unit comes from the Light Energy company (no financial affiliation).
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thanks everybody. Good ideas. I did double my probiotics and that helped a lot. I can eat more easily. Am still exhausted. It may be time to switch meds.
I have thought of consulting another doc for more ideas and different approaches. Am just too exhausted to do it right now.
Will write more when feeling better.
Love and hugs to all! Farraday ♥♥♥♥
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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posted
I'm so sorry. My mother was living a life similar to you, she lived across the country from me, so when I did go see her, I cleaned and did errands for her (I wasn't sick then).
She passed away about 5 years ago. Her house was full of mold. I got the genes that make it so I can't detox mold from both parents. So I know she had one of them.
She was so very sick, and they could never figure out what was wrong with her. She was allergic to everything, on oxygen, chronic pain, confusion, just to name a few of her symptoms.
If your house hasn't had maintenance for any water intrusion you have mold there. This could be why you are still so sick. Have you guys had the HLA DR testing to see if you can detox mold?
If I didn't get the mold out of my house I would still be so sick. If I spend time in a moldy place now, I can get sick for a few days. Now I've had biotoxin illness there is a sicker quicker phenomenon that happens.
Take care over there.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Regarding the mold. I know that hoarders' houses are full of mold due to the debris.
You definitely need some outside help. Let your kids know you need their help in solving this!!
and yes, perhaps an anti-depressant for your husband
Blessings!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
"Are there Senior organizations to help people like us?"
too hard to read all replies but i do know in nh there is an agency that helps but you have to ask for it. they do label you as adult with some sort of problem...for my brother he knew he was sick and in pain but refused to go to doc cuz he knew he had no money. at first they told him to go to the clinic anyway but he refused. was afraid he would get billed.
so they took that to mean he was a danget to himself and in need of supervision.
he didnt own a house so it was different for him but he ended up with a small but clean apt , a small budget, free medical and a lot of help with food.
he is safe and reasonably happy now. lives a simple life. but better off.
the hoarding could be a symptom of lyme. only you know how to handle it. i dont know what happens when you are married. if you asked for help they might put pressure on him.
seems like if you could get out to smaller, simpler space it would be better. kitchen and bath on one floor. you could do your best.
its so complicated i know. if you see llmd...maybe they wont help. i dont know.
i know i am on my way to being where you are...i was always the caregivng mom...but i realized after 20 yrs or so with post lyme problems and new arthritis and head injury stuff i was better off alone.
maybe your son could at least inquire about "adults in need of supervision" and find out the requirements and stuff. he could do it anonymously...they are so busy they dont run out looking for clients
they wouldnt have helped him if he smoked or drank or had a record.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
It is nice to see your name on a post, I have wondered about how you are doing.
It seems like you would be healthier just by moving to a clean un cluttered place. But, I know more is involved-so I shall pray for you.
Please keep us updated. Do you still draw?
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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