kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Just trying to see if things look as bad as I feel they are.
I know right now I need the inflamation in the brain to go away as when this hits I think death is the answer.
It is not to th epoint that it changes my brain chemistry and I hope it doesn't get there.
But, I can't seem to think things are not looking good right now.
I had a change in income which started in Feb. Due to health it took a while to get the apper work taken care of.
For two months I had enough money for food and gas. Things were looking up.
But, I had this nagging feeling that things were not as they seemed.
I am in a brain fog most of the time and have blurred vision off and on.
I saw a peice of paper from the sect 8 housing but couldn't figure it out.
I know I have times when I get something in the mail and just have to let it sit until I am doing well enough to figure things out.
Once I have that moment of clarity, sometimes all I need to do is sign my name.
I am not sure when I got this piece of paper from housing.
I usually rely on the mgr of the apartments to let me know when my rent hcanges and sign the new rent contract.
We have a new mgr. She said she just got notice last month of the rent change.
She did not do a new contract until I let her know that when the people show up today to do apartment inspections they usually audit her records to so she needs to get an update on my rent contract.
She updated it and back dated it to June.
I now owe almost $700 in back rent.
I have 3 more weeks of this month with an est of $50 for food and gas for those 3 more weeks.
So even without the $700 for back rent things were not looking good.
At this point I told her I would make payments.
I don't tink I qualify to go to the food bank anymore. But, that wasn't an answer....when I did go I usually came home with a can of tuna and some canned fruit.
The rest of the stuff they have is not lyme friendly. it is even not good for people without health problems....cereal, bread, top roman, spaghetti and spagetti sauce, etc.
I will still look int whether I can get thigns at the food bank when my health allows.
I am on a gluten free food intake and no sugar.
I have always been the kind of person who stresses over things like this.
Which is not good for my health.
I also am trying to get the student loan payments stopped. That will give me $200 which would have helped with food and gas.
My fear is not having a roof over my head.
I did notify both section 8 housing and the mgr of my new income. Things did not go as they usually do when it was time to sign the new contract with management and sect 8 housing.
The manager says she doesn't think that I should have to pay the $700 in back rent but to take it up with the county as they have their own way of doing things.
I thought it was the manager that needed to update my rent contract and was the reason I fail through the cracks.
But, pointing figures at this point is not going to help. The back rent will still need to be paid.
I am at fault too...when I got the paper from the county instead of waiting until I could figure it out, it would have been better to take it to the manager or perhaps I did give her a copy.
At this point I dont' know....and it is wasted energy focusing ont aht.
I have oak bookshelves I could sell if I had the health to list them and have people coming in the apartment to look at them.
I also have an old oak rocking chair.
I also have some airondack chairs but I have been trying to sell them for a fe years now without any luck.
I have just listend them twice and got one call.
I have them in the hallway of the apartment and had a for sale sign on them.
As I am typing this, I don't have the health to deal with selling thse things and the consignment shops in town closed down.
I have wanted to declutter the bookshelves since I moved to this apartment in 2009 but have yet to be able to do so.
I have only been able to dust them once myself.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Between lack of enough money for food and gas and the really low health for the past 12 years tins are not looking good.
Family is of no help. They make things worse.
Attacking me instead of teh problem.
I am in the pricess of applying for long term care. This will allow me more hours for the caregiver and possibly the transportation to get down the hill to see my primary doc who is lyme friendly but not lyme literate.
I also was ent an email months ago letting me know I could go on the Cowden Protocol for $100 a month but the doc needed to fill out paper work.
I have contacted her once amontbh on this but still dont' know where things stand.
Last I heard from her assitant they wer sorry it took so long to get teh paepr work for the studnet loans and the cowden protocl done.
They also were not clear on the paper work for the cowden protocol and were going to try and contact Nutramedix.
I have not contacted them this month.
I did send an email about Orthostatic Intolerance with the meds that might help.
I need to be bed ridden for the most part.
OK I need to stop now. Even though I am typing this with my eyse closed it does seem to be making the inflamtion in the brain worse.
I know that. Using my brain makes it worse.
I just needed to vetn and hopefully let go of things for now an d just focus on not making thins worse with the inflamation and breathing thru it.
This sucks.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I can not go back and read what I wrote so I hope it makes sens.
I have wanted to move form the apartments for awhile now.
But, I was hoping to be able to put some money away so I would have the funds to move.
That is out.
My hope was to move to San Diego as there is doc there that takes medicare.
or to start a fundraiser page and get down the hill to see the only LLMD in my state.
But, I would need the health to set up the web page...they have web pages that you can use to tell your story all ready set up.
I know of a few lyme patients who have set thigns up...I think it is called go fund you.
I also ahve some other web pages I have been told about but have yet to be ablet o even look into them.
I am very lmited on what I can do.
it has taken since Feb to get the change in income and rent taken care of.
I still need to figure out wha tto do about getting an insurance to go along with the meidcare and what to do about prescriptions costs.
Enough. Got to stop. Making things worse. Brain inflamtion is getting out of control.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I think the next step is to have the interview to get approved or denied for the Lont Term Care program.
Hoping they will communiate with me via email as it makes my health worse talking in person with people.
I told the manager I would let her know next month what I can make in payments.
I need to take things step by step as health allows.
Part of me just wants to get out of this apartment. But, I knwo that would just amke things worse now.
For some time, I have wanted to down size so when I do move I would have less to move.
I also have signed up for low income housing in San Diego and ahve been on the wtg list for at leat 6 years.
I sent them notice of income change but have yte to to here back from them. I thought I had sent notice in Feb but never heard from them so sent ntoice again recnetly.
I am wondering if I have been dropped from the wtg list.
usually then send back a ltr letting me knwo they ahve received the changes.
Having more caregiver help will help depending on teh caregiver.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I looked into a new place in town that is private.
24/7 caregiver person on site. She also cooks the meals and does the laundry and grocery shopping and cleaning.
I would rent a room but I dn't think that would work for me at this time.
I don't think my health could handle being around others. I also have times when I need to open the windows in the dead of winter due to being overheated or turn the heater on in the summer due to being so cold...
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am afraid and in pain and feeling sick which is a constant with just verying degrees.
I also have a $500 Walmart Creidt Card bill which I have yet to figure out if I really did that.
I show $200 in charges
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Kam,
Argh! The things going on with paperwork for you would be mind boggling for someone without lyme!
I know what you mean about the paperwork. I often open it, try to read it to get the gist and then set it aside.
I'm not very good at going through automated numbers either.
My mom is very good at helping me when she visits.
The new manager seems friendly. Is she able to post your furniture for you?
I am sorry you are going through this alone.
Do you have a friend that can help you out with the forms?
Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
It was so nice for those 2 months when I also had enough funds to purcahse Rosie's food and get her groomed and get a hiir cut for me and get the oil changed in the car.
Next I was going to save funds to get the back tires replaced on the power chair.
And put away money to move. Things were looking up.
Now, things aren't looking so god.
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
That's messed up that the manager backdated the application to June.
I'm sorry you are dealing with a bump in the road. I wish I was rich, so I could help you out.
I hope you can get the student loans deferred soon so that you can save $. If I were in your shoes, I would not send anymore student loan payments while you are waiting on the deferment or forbearance or disability discharge.
Your basic living requirements and medical needs come first. That's what Dave Ramsay's Financial Peace University teaches.
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
lax mom, Dave Ramsay would stay student loans get kicked to the curb for now. Kam I hope you don't have student loan deducted from your checking acct?
If you do, close that acct and open another acct. Walmart can get kicked to the curb for now too. It would be good to make sure those charges are yours.
Roof, electric and food & medicine is first always.
I wish you had a advocate that could help you with paper work.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
first of all it is not you. really. you have problems thinking i know...but so much "paperwork" stuff is so screwy now.
i screwed up and owe irs 3500. i didnt know about. i know i screwed up-my accountant filled out forms for me to tell them i would pay monthly til it was paid off before april 15.
they sent me 10 pages on HOW TO PAY THEM . it was crazy...i still cant figure it out...so it is NOT you.
i know you cant read all my stupid words...but i would say:
KAM START HERE-I SUMMARIZED:
-its not your fault-its the system
-just stop the student loans...
(really...i know others in much better shape than you that did that and unless you hit the lottery or something nothing will happen. )
-sell furniture if its a problem to have it...but not if you can use it or like it
(its a stress selling...wierd ppl...fake money...and you never get anything close to what it is worth)
-prioritize getting good food. can you get a neighbor to pick up fresh stuff...the same each week so it is ez, order some online, at least the healthiest food is the cheapest
(you need good food ...finding it is hard tho. and the food banks keep ppl from starving but in the long run make them sicker imo.)
i agree with map basically: Roof, electric and food & medicine is first always.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I am on SS so student loans are automatically deducted. I have no say in it.
It would be nice to have the $200 go towards food and gas instead.
So hoping the paper work gets processed soon and the payments stop.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Thanks. I am no longer in crisis mode. I think having whatever goes in in the brain lighten up has helped.
Chemistry changes when the inflamtaion hits and I go in a rabbit hole.
I see have msg but will need to read them when I am doing better. Not ignoring anyone.
For now, I still need to just lie here and breath. I was able to get something to eat.
Kayak...and others. It is scary when the pistons are not firing.
I use to get paid for pushing appers and was good at it. Now, I have a great deal of trouble dealing with paper work or finding someone else who can help and not make things worse.
I just got an email tellin gme it was time to sign up for medicare again. I was automatically put in the program
So, this time I am not sure what to do and am hoping I can get it taken care of in time.
I do have an email of a person I can write to that might help.
She came and spoke to the neighbors here. I did not go as I can only take in about 2 or 3 sentences and then the mind goes.
Plus the MCS would kick in and I am not able to recline...I need to be flat on my back.....so I will email her when able.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have been too exhausted and the brain has been out to lunch without me to to do anything lately so waiting it out.
I was able to get the paper work in to possibly get more caregiver help.
Hoping this will help me so I dont' have to wait months to follow thru on things.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Wow SS takes your student loans out of monthly payment. OMG!
I'm so sorry the system (that sucks so bad) has you by the throat. I hope you can get them to give you a grace period or something.
Prayers you get them to help you. You deserve a break my dear! Another way an advocate would be so beneficial to you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Vgoing on with the balance even when I am lying down keeps me from reading what you all have written.
I'll be back when this has lifted. ision and or brain processing and something
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Pam....not able to read what I have wall ready written but I have applied to get the student loans canceleld due to health...
but things keep going into a balck hole.
yes having someone who is able to follow thru on things or represent me for the interview with the organization that migh tprovide more help would help.
I would still be going thru the same business that has the contract for caregivers thought.
They are having trouble finding good ehlp.
yesterday, I asked my caregiver to sort the laundry and she started taking the dirty laundry and putting it back on the shelf...
I didn't realize what she was doing until she asked me if I wanted some of my clothes hung up taht were in the laundry basket.
Looks like I need to teach her how to sort laundry now when my health is doing well enough to do so. Weird and frustrating.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Doesn't surprise me. Good helpful and common sense people are hard to find these days.
Lord, please send someone into Kam's life that can help her through her red tape paperwork. And Lord, maybe this person also will know how to sort laundry.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Amen
Posts: 1686 | From Maine | Registered: Jun 2004
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Just checking to see when brain was working well enough to get frustrated.
It has pretty much been out to lunch without me since.
Oct 17 to 21st...5 days....wondering when my brain will go back on line again.
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Sounds like this past full moon kicked you up too. Some moons are much easier on me. This one that was Oct 17th took 7 days of bad inflammation.
I hope it let's go of you soon kam!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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kam
Honored Contributor (10K+ posts)
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posted
Pam It seems it is not until after the fact that things become clear as to what was going on.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Brain finally kicked in a bit this am.
A cyber lyme friend in CA is going to make some calls for me re:
Long Term Care: this will allow me more caregiver hours if approved
Doctor's office: I needed to know if the doc would refill the sleeping meds before I go down the hill for an appt on Nov 7.
I rec'd a fax from her office saying due to a new govt program she will not be doing refills on certain meds until the patients have a blood and urine test.
I only have 6 sleeping pills so hoping she will do a refill before I get down there.
I need prayers for somoen to drive my car down the hill for me. It has been a year since I went to see the primary doc.
I have put up a note on the board here in the apartments in the past to have someone drive me down but no one responded. Most are not in good enough shape to make a trip down the hill.
I contacted churches and only one church responded. The person that drove me last time will be out of town this time so can't drive me.
My friend is also going to follow up on the paper work for the cowden protocol to see if the doctor got that in...
Ther was something else but the brain is fding fast now.
Trying not to become dispared??
Most of the time I deal with this disease by being in denial of how low functioning I am and just being thankful for what I am able to do.
If I need to go down the hill before the office visit on the 7th, I don't have the gas money to get down there.
So, hoping she will do the refill.
Ah yes. My friend is also going to call the education department to see wehre things stand with the studnet loans.
Ok Brain is hurting now. Need to veg. Over did it.
Need prayers. Not sure what the answer is...I think approval for more caregiver hours and a good caregiver that can make these calls for me.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Have you been on Minocycline? This helped my brain fog immensely and helped kick my lyme to the curb. It crosses the blood brain barrier. I know what you say about food banks having the worst food for low income. You would think they would try to invest in more nutritious foods. Here in Oregon, at least they have partners like the gleaners so many get fresh veggies. Not sure what happens in winter, but hope more fresh food stuffs are made available.
Posts: 482 | From Oregon | Registered: Feb 2011
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have some mino ...I think it is mino..I need to check.
But, I have been afraid to try it as I can not handle doxy and mino is supposed to be in the same class.
As I am typing this, I could start off with small doses.
I'll have to check and see what it is I have.
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
A bit of a brain flare today. I am going to see when I first posted this thread as I was having a bit of brain flare then too.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Closing my eyes as I type.
I rec'd a ltr from ? re: the student loans. I was able to kind of scan it. It looks like they will be stopping payments until a decision has been made to cancel student loans or not.
I will know on the 3rd if they have stopped payments for Nove.
I will be loooking up at God and thanking him if so
I rec'd an email about a financial interview via the phone for the long term care. I sent an email back asking if they could ask me the questions via email so I could answer them when health allowed.
I need to come up with back payments for the rent. I do believe it was someone's fault and that I did notify both people of my new SS income.
But just being thankful for a roof over my head that is kind of quiet and safe and mostly friendly.
I would like to move though when able. But, it looks like a while before I will be able to lstart putting money away in order to move.
It most likely will take me a year to pay the back rent payments. I am hoping that is acceptable to management.
I would like to move into a one bedroom house with a fence in yard and my own washer and dryer.
I am tring to take it one day at a time today.
But, I need to work at it as fears keep poppoing in my mind and things that need to be done that have gone a long time without me being able to do.
I need to send a note with the elec bill. It i sdue today and I don't have the funds. But, that is OK.
I will pay it on the 3rd. I found out my neighbors bill is just about the same as my bill.
Which doesn't make sense as she runs her heating and air conditioning unit just about 24/7.
I know as it is under my front room window.
She also has complained to the elec company. I learned they told her to keep her thermostat on 77 around the clock.
That explains why her bill is so high.
I have not run the heating unit or air this month so hoping the bill goes down.
If it doesn't. It is either the new meters they put in or I am paying for someone else's bill.
I had this happen one time before.
I have an appointment with the primary care doc down the hill. Sh needs to draw bloodand urin now for those people who are on what is called controlled drugs.
Mine is the sleeping pills.
I have not seen her in a year.
STill trying to someone to drive me down the hill.
I will ask her if she got the paper work in for the Cowden Protocol when Isee her. That has gone months too.
I will need to come up with $100 a month for 6 months if all goes well. I hope so.
Kind of scared of trying it if I don't have the caregiver here for more hours.
I know with some things I take I am not doing well enough to get up and get something to eat or drink.
It hasn't helped to type this out this time. BRain is too fogged in and not feeling well enough. Maybe it will help later.
too many cobwebs
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I really need to get to a LLMD. I keep leaning towards seeing the LLMD in San Diego.
Guess I need to take things a step at a time.
First step would be to make an appoitment.
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